What a wonderful, exciting, tremendous month this has been for ALS patients, families, doctors and researchers!! Never in my wildest dreams did I ever think pouring a bucket of ice would be so much fun to watch - over and over again!
For me there are three very tangible outcomes from these challenges:
Education and Awareness
Don't feel bad if you really didn't know what ALS was until recently. Before Patrick's diagnosis my knowledge about ALS was about zilch. Unless you said "Lou Gehrig's disease," I wouldn't even know it existed. I would guess if you did a study about two months ago, less than 25% of people would know something about it (this is Cheryl's very unscientific study). What a difference a day makes, today ALS is a household word. Yes, there are those doing the challenge that likely still have no idea what ALS is, with all things we can chose to be ignorant.
Frankly, this challenge has created an interest in a very unknown underfunded disease. Nancy Ferguson, at the Sacramento ALS Office, informed me that the phone has been off the hook at the office with people calling to ask what is ALS and how they can help. So, although some chose to be ignorant, some also chose to make a difference. To the second group I say - hooray for you!
Being Connected and Staying Connected
When you are given a diagnosis of ALS, there is a strong feeling of separation from the "outside world." As human beings, we spend a tremendous amount of time considering the future, i.e. when to retire, what should be my next job step, saving for the next big trip, looking forward to children and grandchildren milestones. ALS changes these plans, it doesn't eliminate them entirely, but it certainly makes you look at time on a more immediate basis. So our thinking is somewhat different than the "normal" person.
To add to this change of thinking, ALS is a diagnosis that until recently was largely unknown. So, while we are thinking about the future differently we are also trying to educate folks on what ALS is. At times I've explained many aspects of ALS to doctors, nurses, friends and strangers. Again, this gives the feeling of "separation" from the outside world.
The unmeasurable benefit of the bucket challenges is providing ALS patients and families with the feeling of being connected to the "outside" world. As I watch these videos and see the support from friends, family and neighbors I realize that ALS is now a household word. People are more interested and educated and now when I say my husband has ALS - often the response is, "did you know, they are doing ice bucket challenges for patients with ALS?" Which always makes me smile, "Did I know??"
Money
Where does the money go? I think this is a very legitimate question. There have been times when I was sent an email by a friend to support them in a walk, run, jump rope, head shaving... all kinds of endeavors to bring money and awareness to a disease. Sometimes I'm familiar with the organization and sometimes not. I have indeed pledged money to a friend, merely to support the friend, not really knowing if my money was being put to good use.
In this, I can assure you, if you donated to the Sacramento ALS Association, you can rest easy that your money is going to help ALS patients directly. The local ALS Association focuses primarily on "patient care." This includes, a loan closet, patient advocacy and outreach, support groups and various grants for caregivers and patients. Here are a few places your money goes...
Travel Costs: If you live outside Sacramento/San Francisco you have to travel to get to your doctors appointments. Many rural places in Northern California have no neurologist and the closest ALS clinics are San Francisco or Sacramento (four hours away from Susanville, my hometown). Grants are provided to families that cannot afford the travel to the clinics, which for an ALS patient often means the difference between getting the care you need or not.
These clinics are important in that they offer multiple disciplines at one appointment. At your appointment they rotate various specialists; nurse, neurologist, respiratory therapist, speech therapist, social worker, physical therapist, occupational therapist, etc. etc. all in one appointment. They are all ALS experts in their respective fields and can be proactive in managing your care. So, going to a general neurologist just isn't enough for an ALS patient.
Loan Closet: I've mentioned this before, but it's such a benefit for ALS patients. As the disease progresses, there are many mechanical devices that ALS patients need that are not covered by Medicare or Insurance. The costs of these can be incredible. Until Patrick got his power wheelchair, we borrowed a take-apart scooter from the closet that on the market runs about $3,000. We paid nothing...
Recently, in support group there was a caregiver that lived in Chico and needed a power wheel chair loaner until her husband's chair came in. The association offered, not only to lend her a chair, but to deliver it to her in Chico.
Grants: Insurance covers some power chair items and not others, weird, huh. One of the features it doesn't cover is the ability to move vertically. This allows for much easier transfers from chair to bed or chair to walker. However, it's not considered medically necessary - a term that irritates the crap out of me. The association provided a grant to cover the cost of this feature for us, the cost was around $2,500. I can tell you Patrick uses this feature every time he gets up from the chair - it's a tremendous asset.
Another grant available for low-income families is a grant to cover some respite costs to provide home health care providers. This allows the caregiver to have a well-deserved occasional break from their role as caregiver.
Staff: There are two patient coordinators, Nancy Wakefield and Nancy Ferguson, at the association. They are invaluable resources for caregivers, patients and family. They visit patients, assess their needs and assist patients throughout the ALS journey. Remember that connection, the association staff, works hard to make patients and their families stay connected to the outside world and have resources available. Nancy and Nancy also run the support groups that I've mentioned many times and are a great source of strength.
Patrick and I are fortunate that we have wonderful family, great friends and a community that often drop by dinners, sends cards and hangs out with us. However this is not the case for some ALS patients. Sometimes relationships are strained, the patient does not have a spouse/partner to care for them or they're just not connected to their local community. These can be very sad cases because ALS will isolate the individual even more. Often the association helps fill this void.
So rest easy, your money is going to good hands!! Here is a link to our Team Timmons ALS Walk Page, if you'd like to make a donation or join the team! The money goes to support the Sacramento ALS Association.
http://websac.alsa.org/goto/TeamTimmons
So in the spirit of ice bucket challenges... here are a few by our family!
Anthony Carrabello
Christian Carrabello
Cheryl Timmons
(if you look at the grandsons, they look like vultures just waiting to strike, I honestly thought I'd wind up in one of those ice bucket challenges gone wrong clips...)
Denise and Mike Tedeschi
And my personal favorite, Sean Timmons.
To everyone who did the ice bucket challenge, donated money or looked ALS up on the web to find out "what it is," a huge thanks. All the best to you and yours!
Sunday, August 24, 2014
Sunday, July 20, 2014
Support, Loss and Life
Patrick and I continue to make the journey each month to the ALS support group in downtown Sacramento. The group provides us with a variety of things; information, understanding and above all a group of fellow travelers on a horrible journey. At any given time, there are 30,000 people living with ALS in America - it's a small exclusive club. It's one of the many services provided by the ALS Association of Sacramento - to whom we are grateful.
When we first starting going to the group there was a woman who came to express her thanks for the support her father had received during his ALS journey. She said her father called it "the greatest club, he never wanted to join." At the time I didn't fully appreciate the comment, but I do now. These fellow travelers have become friends, and comrades. We are an interesting hodge podge of folks from various walks of life - different ages, lifestyles and beliefs. All thrown together because of a nasty disease. The Association provides a lead staff person to each group; patients and caregivers - on my side is Nancy Ferguson and on Patrick's is Nancy Wakefield - affectionately known as the "two Nancys." Both of these ladies have tremendous compassion and their thoughtful consideration during support group does not go unnoticed.
The sad news is that we lost two of our fellow travelers over the past month. These two couples were "regulars" we shared in their journeys for as long as Patrick and I have attended the group. Leanne was a tenacious fighter for ALS patient rights, she traveled to D.C. to promote the compassionate care act (an act that allows ALS patients greater access to medications) and she participated in a number of ALS studies, all the while combating the disease herself.
Tam was faced with bulbar onset of the disease, this means that her initial symptoms started in the bulbar region (head and torso), generally with bulbar onset the prognosis is not very good. With breathing, eating and speaking initially affected, life expectancy is short. Tam fought these odds and lived much longer than the average bulbar onset patient. She excelled at using technology to continue to live her life normally and encouraged other ALS patients to make choices to lengthen their lives.
I'm still recovering from a tremendous sense of loss of these two women. They were blessed in that both had supportive husbands that cared for them during this journey. At yesterday's support group, their spouses told stories of their lives and shared their feelings on love, life and loss. It was for me, a beautiful tribute to these ladies (who coincidentally died a day apart) I will always remember their strength, fighting spirits and support over the past year.
My hope is that you'll never attend an ALS support group, and the statistics are in your favor. But, if you find yourself in need, it's good to know the group is there. I think you'll find it is a tremendously non-judgmental group, passing information, sharing concerns and distributing empathy to their fellow ALS travelers.
To Tam and Ron, Leanne and Bob, thanks for being part of our journey. Your strength will live in our memories!
I am reminded to live each day to the fullest, enjoy the sunset, and find the joy in the moment. We all have times of anger, frustration and guilt - all I can say is, spend a moment there, but don't make them your existence - life is too short.
When we first starting going to the group there was a woman who came to express her thanks for the support her father had received during his ALS journey. She said her father called it "the greatest club, he never wanted to join." At the time I didn't fully appreciate the comment, but I do now. These fellow travelers have become friends, and comrades. We are an interesting hodge podge of folks from various walks of life - different ages, lifestyles and beliefs. All thrown together because of a nasty disease. The Association provides a lead staff person to each group; patients and caregivers - on my side is Nancy Ferguson and on Patrick's is Nancy Wakefield - affectionately known as the "two Nancys." Both of these ladies have tremendous compassion and their thoughtful consideration during support group does not go unnoticed.
The sad news is that we lost two of our fellow travelers over the past month. These two couples were "regulars" we shared in their journeys for as long as Patrick and I have attended the group. Leanne was a tenacious fighter for ALS patient rights, she traveled to D.C. to promote the compassionate care act (an act that allows ALS patients greater access to medications) and she participated in a number of ALS studies, all the while combating the disease herself.
Tam was faced with bulbar onset of the disease, this means that her initial symptoms started in the bulbar region (head and torso), generally with bulbar onset the prognosis is not very good. With breathing, eating and speaking initially affected, life expectancy is short. Tam fought these odds and lived much longer than the average bulbar onset patient. She excelled at using technology to continue to live her life normally and encouraged other ALS patients to make choices to lengthen their lives.
I'm still recovering from a tremendous sense of loss of these two women. They were blessed in that both had supportive husbands that cared for them during this journey. At yesterday's support group, their spouses told stories of their lives and shared their feelings on love, life and loss. It was for me, a beautiful tribute to these ladies (who coincidentally died a day apart) I will always remember their strength, fighting spirits and support over the past year.
My hope is that you'll never attend an ALS support group, and the statistics are in your favor. But, if you find yourself in need, it's good to know the group is there. I think you'll find it is a tremendously non-judgmental group, passing information, sharing concerns and distributing empathy to their fellow ALS travelers.
To Tam and Ron, Leanne and Bob, thanks for being part of our journey. Your strength will live in our memories!
I am reminded to live each day to the fullest, enjoy the sunset, and find the joy in the moment. We all have times of anger, frustration and guilt - all I can say is, spend a moment there, but don't make them your existence - life is too short.
Thursday, July 3, 2014
Part II - How's Patrick Doing? #5
The last "How's Patrick Doing" was in January (where does the time go) and over these past six months there has been a decline. I notice changes most when it is necessary to adjust our routine. That's the most significant time for me. For friends and family there is often a period of time between seeing Patrick so the changes likely appear more dramatic.
I think there are other changes that can't really be seen, changes Patrick feels (and sometimes comments on) these are more in the way he feels internally or small changes. In some ways I'm very good at noticing small changes and with others I'm completely unaware - I guess it just depends on what we're looking at.
As I've always said, this blog is written from the perspective of a caregiver and not an ALS patient. I am a daily observer, but I don't walk in his shoes. I will say that Patrick reads all the blogs before publishing so he does edit (both grammatically and for content) He does add his own "two cents" on occasion so hopefully, my descriptions are fairly accurate. So, here is how Patrick is doing now...
Follow-up to the "Hospital Job"
We are about three weeks passed Patrick coming out of the hospital and I'm happy to report that he is recovering. He hasn't fully gotten his stamina back but he's moved from sleeping in until noon to getting up about 10:30am. This is a more consistent pattern from before the drug reaction.
We notified all his doctors of the sulfa reaction to make sure we don't have this experience again. Dr. Fujikawa, Patrick's primary doctor, says that often subsequent reactions are worse than the first. So, we are making sure that everyone is informed.
Wheelchairs, Vans and Beds
In May, Patrick's power wheel chair was delivered. These power chairs are quite a bit more involved and expensive than the scooters you see about. He spent a considerable amount of time with Brian, at Premier Medical Supply, selecting the seat cushion, "joystick" control and type of wheel maneuvering. Which was time well spent - to all you ALS patients out there I highly recommend that you take a "test drive" before committing to a certain type of chair. Initially, he was going with the "standard" fixtures but after the test drive and considering all the options - Patrick changed many of the features and is quite pleased with the final product. With ALS you spend many hours a day in a power chair so it's important that you are comfortable. There is no returning a $20,000 power wheelchair.
The new chair allows him to turn almost on a dime, the seat moves to allow for ease of transfer and it can go up to six miles per hour. Oh, and it's a lovely shade of blue - yeah, that was my recommendation. For now he still uses his walker in the house, but he is slower than the prior post and walking is becoming more difficult.
The chair has the ability to lay almost horizontal. Patrick puts it back to slide himself back in the chair. He said initially that it was a little disconcerting but he seems to be used to it now.
For Patrick to travel in the wheelchair, we bought a wheelchair accessible van. It's a Buick Terraza (never heard of these before), we purchased it used from Destination's Mobility in Sacramento. We are very pleased with the purchase and Steve from Destination's Mobility was easy to work with - even bringing the van from South Sacramento to Roseville twice to spare us the travel.
Caitlin and I are becoming experts at buckling the chair down in the van - Patrick calls us his "pit crew." There are automatic type devices but they are considerably more expensive, and we are managing fine.
On a side note - if you have a handicap placard, when you park use the "regular" handicap spots first and the "van accessible" spots second (they are clearly marked). A handicapped person with a wheelchair van is limited on where they can park and it can be challenging. One of my greatest pet peeves (and yes, I've used some choice words on occasion) are people that park in handicapped spots but either have no placard or are obviously not handicapped.... UGH.
In addition to the new wheelchair, we've invested in a new adjustable bed. The bed allows for Patrick to be moved into a sitting position for ease of transition. It's also pretty comfortable to sleep on so we both enjoy it.
Hands, Eating and Personal Hygiene
As I've said in the past blogs, Patrick's symptoms started in his hands so this is where his greatest challenges lie. At this point, he can't control some of his fingers and others are limited. This impacts many of his regular activities; we use our hands for so many things - itching, eating, bathing, drinking etc. In my opinion, this is where I've seen the greatest change over the past six months. We adjust as much as we can - learning from other ALS patients or simply trying out various ideas. He's been using modified silverware for months, but has lost much of the ability to feed himself and requires quite a bit of help. We use straws for everything - this truly is one of man's greatest inventions.
Showering is our latest joint endeavor - there is a funny post from another ALS patient - who says "when did my personal hygiene become a spectator sport." - sad, funny and true. This is not just because of his hand issues but also due to the physical energy that goes into showering along with the ability to stand in the shower (without falling). It was just getting to be too much. After each shower he was taking a half hour nap and had a few close calls with falling - not good, so we changed the process. Remember, constant change, constant loss - the story of ALS.
Bathrooms
We are working with Hal, an ADA Contractor, recommended to us by Susan and Cliff Catlett (fellow ALS Journeyers). Hal is going to remodel our bathroom; this includes enlarging our shower and removing the "lip" that you step over to get in. This will allow for greater room in the shower and the ability to get a chair that rolls in instead of Patrick stepping over the lip (which is scary to watch).
The bathroom will be retiled and to make things easier we are enlarging the commode door for easier access with Patrick's power chair. The process will take about a month; with the typical dust, noise and loss of bathroom use. The bathroom use is a difficult one, we will likely be renting a hotel room for a couple nights so that we have a shower for Patrick to use. The tub/shower type which is in our second bathroom is just not usable for Patrick at this point.
I'm not looking forward to the month of construction, but it will be worth it when all is said and done. The Catlett's were very pleased with their bathroom remodel so I'm anxious for it to be completed.
The other consideration during this remodel is changing out the flooring in our bedroom as well as bathroom. As the ALS progression continues, it will be necessary to use a "Hoyer Lift" to get Patrick to and from the bed and chair. Everything I've heard from other patients is that it is almost impossible to roll the lift on carpeted flooring. So we are looking at a durable vinyl or tile that would extend throughout the bathroom/bedroom. As one of our support group folks is always saying "you have to stay ahead of the game." We hope this is a long way off, but recognize that we should make the change during the construction period to avoid having to do it twice.
Voice Changes
Probably the latest symptom that Patrick has developed is the change in his voice. I'm not sure I can totally explain the changes that are occurring but I'll do it from my perspective and then try to describe it from his perspective.
Firstly, he sounds a bit different, his voice doesn't project as well and is more nasally. Sometimes it's more pronounced than others - during the late afternoon and when he's tired or stressed it is more significant. ALS patients are more symptomatic when stressed or tired - hence his voice is noticeably different during these periods. Secondly, his voice projection is not as strong. So, if he's trying to speak to Caitlin on the other couch (this is when I notice) she can't always hear him.
Thirdly, he seems a bit slower to speak - it's subtle so I'm not sure others would notice but we spend a lot of time together so I do. Patrick says he's telling his voice to speak, but there is a delay between the thought command and speech. This is a common ALS symptom according to Bob, the RN caseworker at the ALS Clinic. I can't really imagine it. We walk, talk, itch etc. without really thinking about it. With ALS these functions require more thought process and reaction time is often slower.
Our next clinic visit is in August and I suspect this will be our first visit with the speech therapist. There are a variety of mechanical devices to help with voice issues - I'm grateful we live in this technology age. It wasn't many years ago that when you lost your voice you would simply lose your ability to communicate but that's no longer the case. Today there are text-to-speech devices that allow a person to communicate using eye gaze technology.
Day by Day
These are very hard changes to watch and consider. We know the journey, and where it ultimately leads and watching his decline is difficult. We take each day as it comes and try to "stay ahead of the game" and still enjoy the moments that we have.
My hope and prayers are for a day without ALS! In October, the next Walk to Defeat ALS will be held in Sacramento, so we hope you'll join us in walking to find a cure! Here is a link to Team Timmons - come out, we'd love to see you!
I think there are other changes that can't really be seen, changes Patrick feels (and sometimes comments on) these are more in the way he feels internally or small changes. In some ways I'm very good at noticing small changes and with others I'm completely unaware - I guess it just depends on what we're looking at.
As I've always said, this blog is written from the perspective of a caregiver and not an ALS patient. I am a daily observer, but I don't walk in his shoes. I will say that Patrick reads all the blogs before publishing so he does edit (both grammatically and for content) He does add his own "two cents" on occasion so hopefully, my descriptions are fairly accurate. So, here is how Patrick is doing now...
Follow-up to the "Hospital Job"
We are about three weeks passed Patrick coming out of the hospital and I'm happy to report that he is recovering. He hasn't fully gotten his stamina back but he's moved from sleeping in until noon to getting up about 10:30am. This is a more consistent pattern from before the drug reaction.
We notified all his doctors of the sulfa reaction to make sure we don't have this experience again. Dr. Fujikawa, Patrick's primary doctor, says that often subsequent reactions are worse than the first. So, we are making sure that everyone is informed.
Wheelchairs, Vans and Beds
In May, Patrick's power wheel chair was delivered. These power chairs are quite a bit more involved and expensive than the scooters you see about. He spent a considerable amount of time with Brian, at Premier Medical Supply, selecting the seat cushion, "joystick" control and type of wheel maneuvering. Which was time well spent - to all you ALS patients out there I highly recommend that you take a "test drive" before committing to a certain type of chair. Initially, he was going with the "standard" fixtures but after the test drive and considering all the options - Patrick changed many of the features and is quite pleased with the final product. With ALS you spend many hours a day in a power chair so it's important that you are comfortable. There is no returning a $20,000 power wheelchair.
The new chair allows him to turn almost on a dime, the seat moves to allow for ease of transfer and it can go up to six miles per hour. Oh, and it's a lovely shade of blue - yeah, that was my recommendation. For now he still uses his walker in the house, but he is slower than the prior post and walking is becoming more difficult.
For Patrick to travel in the wheelchair, we bought a wheelchair accessible van. It's a Buick Terraza (never heard of these before), we purchased it used from Destination's Mobility in Sacramento. We are very pleased with the purchase and Steve from Destination's Mobility was easy to work with - even bringing the van from South Sacramento to Roseville twice to spare us the travel.
Caitlin and I are becoming experts at buckling the chair down in the van - Patrick calls us his "pit crew." There are automatic type devices but they are considerably more expensive, and we are managing fine.
In addition to the new wheelchair, we've invested in a new adjustable bed. The bed allows for Patrick to be moved into a sitting position for ease of transition. It's also pretty comfortable to sleep on so we both enjoy it.
Hands, Eating and Personal Hygiene
As I've said in the past blogs, Patrick's symptoms started in his hands so this is where his greatest challenges lie. At this point, he can't control some of his fingers and others are limited. This impacts many of his regular activities; we use our hands for so many things - itching, eating, bathing, drinking etc. In my opinion, this is where I've seen the greatest change over the past six months. We adjust as much as we can - learning from other ALS patients or simply trying out various ideas. He's been using modified silverware for months, but has lost much of the ability to feed himself and requires quite a bit of help. We use straws for everything - this truly is one of man's greatest inventions.
Showering is our latest joint endeavor - there is a funny post from another ALS patient - who says "when did my personal hygiene become a spectator sport." - sad, funny and true. This is not just because of his hand issues but also due to the physical energy that goes into showering along with the ability to stand in the shower (without falling). It was just getting to be too much. After each shower he was taking a half hour nap and had a few close calls with falling - not good, so we changed the process. Remember, constant change, constant loss - the story of ALS.
Bathrooms
We are working with Hal, an ADA Contractor, recommended to us by Susan and Cliff Catlett (fellow ALS Journeyers). Hal is going to remodel our bathroom; this includes enlarging our shower and removing the "lip" that you step over to get in. This will allow for greater room in the shower and the ability to get a chair that rolls in instead of Patrick stepping over the lip (which is scary to watch).
The bathroom will be retiled and to make things easier we are enlarging the commode door for easier access with Patrick's power chair. The process will take about a month; with the typical dust, noise and loss of bathroom use. The bathroom use is a difficult one, we will likely be renting a hotel room for a couple nights so that we have a shower for Patrick to use. The tub/shower type which is in our second bathroom is just not usable for Patrick at this point.
I'm not looking forward to the month of construction, but it will be worth it when all is said and done. The Catlett's were very pleased with their bathroom remodel so I'm anxious for it to be completed.
The other consideration during this remodel is changing out the flooring in our bedroom as well as bathroom. As the ALS progression continues, it will be necessary to use a "Hoyer Lift" to get Patrick to and from the bed and chair. Everything I've heard from other patients is that it is almost impossible to roll the lift on carpeted flooring. So we are looking at a durable vinyl or tile that would extend throughout the bathroom/bedroom. As one of our support group folks is always saying "you have to stay ahead of the game." We hope this is a long way off, but recognize that we should make the change during the construction period to avoid having to do it twice.
Voice Changes
Probably the latest symptom that Patrick has developed is the change in his voice. I'm not sure I can totally explain the changes that are occurring but I'll do it from my perspective and then try to describe it from his perspective.
Firstly, he sounds a bit different, his voice doesn't project as well and is more nasally. Sometimes it's more pronounced than others - during the late afternoon and when he's tired or stressed it is more significant. ALS patients are more symptomatic when stressed or tired - hence his voice is noticeably different during these periods. Secondly, his voice projection is not as strong. So, if he's trying to speak to Caitlin on the other couch (this is when I notice) she can't always hear him.
Thirdly, he seems a bit slower to speak - it's subtle so I'm not sure others would notice but we spend a lot of time together so I do. Patrick says he's telling his voice to speak, but there is a delay between the thought command and speech. This is a common ALS symptom according to Bob, the RN caseworker at the ALS Clinic. I can't really imagine it. We walk, talk, itch etc. without really thinking about it. With ALS these functions require more thought process and reaction time is often slower.
Our next clinic visit is in August and I suspect this will be our first visit with the speech therapist. There are a variety of mechanical devices to help with voice issues - I'm grateful we live in this technology age. It wasn't many years ago that when you lost your voice you would simply lose your ability to communicate but that's no longer the case. Today there are text-to-speech devices that allow a person to communicate using eye gaze technology.
Day by Day
These are very hard changes to watch and consider. We know the journey, and where it ultimately leads and watching his decline is difficult. We take each day as it comes and try to "stay ahead of the game" and still enjoy the moments that we have.
My hope and prayers are for a day without ALS! In October, the next Walk to Defeat ALS will be held in Sacramento, so we hope you'll join us in walking to find a cure! Here is a link to Team Timmons - come out, we'd love to see you!
Thursday, June 12, 2014
How's Patrick Doing, #4, Drug Reactions and Hospitals
It's been almost six months since I did an update on Patrick's progression. There is always a sense of sadness for me with these posts, because I look at the prior "How's Patrick Doing" and consider what has changed. It's my own FRS (Functional Rating Score) and unless I completely bury my head in the sand I must admit that there has been a decline.
Interestingly I'm going to start with a health issue that is not ALS related, but resulted in Patrick being in the hospital for the past week. This will be a two parter - the first part is about Patrick's current health events and the second, will chronicle his ALS progression since January.
Drug Reactions
Patrick developed a urinary tract infection about two weeks ago. The infection came on quick and the doctor prescribed Bactrim which is typical for these types of infections. The prescription worked well for the first couple of days, the symptoms associated with the infection declined and he felt better. But the third day into the medication he developed a very high fever, headache, chills - just to name a few ailments. Frankly, he was miserable. I contacted the doctor who felt it was likely the infection was just running its course, but to come into his office and have it checked out. We made an appointment for the following day and hoped he would start feeling better.
Unfortunately, the next day he felt worse. So the question comes up, do we go to the emergency room or go to the doctor's appointment? Well, I chose the latter (not sure if that was the "right" decision or not frankly) the physician's assistant didn't really know what to make of his symptoms and she said that doctors can no longer directly admit into the hospital, so we'd have to either ride it out or go to the emergency room. We opted for the emergency room, but stopped by the house to pick up some things (my experience is you spend a lot of time waiting, at the ER). However, when we got home, Patrick was barely mobile and we wound up calling 911 and the ambulance took him to the hospital - which probably got him in quicker, not really sure.
When the ambulance arrived at the house he had a fever of 104, he was completely exhausted and showing signs of dehydration. So they rushed him over to Mercy San Juan Hospital. They got him on fluids right away, but they could not determine why he was so ill. The doctor told us immediately that he would be admitted and they were considering the possibility that he was having an appendicitis.
Patrick spent six days at Mercy San Juan while the symptoms ran their course; he went from fevers, to chills, to a head to toe rash, to sore throat and breathing difficulties. If you read "Dr. Google" you'll see the list of symptoms for extreme reactions to Sulfa drugs, Patrick got them all! As I write this he is still covered over most of his body with a horrible rash. He is a little slower than before but starting to bounce back. Gratefully his sense of humor and calm demeanor never left him.
He couldn't recall ever taking a sulfa based antibiotic, in the past he had been on penicillin derived drugs so this was his first (AND LAST) time.
ALS and Illness
A severe drug reaction is awful for anyone but for someone with ALS it causes a multitude of problems. There is a level of tiredness that all ALS patient's have, the body is always working, so they are constantly burning calories. Most ALS patients I know, take naps during the day due to their exhaustion level. We all know how awful we feel when we're sick and exhausted. Now add ALS to the equation and you understand how utterly zapped Patrick felt. This is still challenging, and as I write this, he sleeps.
His mobility issues were dramatically impacted, he went from walking with a walker to barely able to stand. Getting to and from the bathroom became tremendous battles. It's amazing how far the bathroom looks when you are having difficulty moving. The weakness in his hands and arms was very significant. He was barely able to lift his arms, which when your whole body itches, is a tremendous source of frustration. The movement in his legs has returned but his hands and arms are still recovering.
Of course, the scariest symptom was the effect on breathing. We all have to breath and with ALS the diaphragm is already compromised so adding an illness that is weakening your breathing can make things life threatening quickly. Fortunately, at this point Patrick has not developed the breathing problems associated with ALS so although it was scary it wasn't too severe. We both ponder what the outcome would have been had his breathing already been comprised (I think I'll just be grateful that wasn't the case and not dwell on it too much).
Hospitals, Nurses and Staff
Mercy San Juan Hospital is an interesting place. It's an old hospital that was renovated with a new section attached. The layout is kind of funky, with only one entrance in the new section where you have to work your way through a maze to find the right bank of elevators to the old section, which is where Patrick's room was. I knew Patrick had been there too long when I no longer made the wrong turns and found a quicker exit to the parking garage. The first night we were there I set off an alarm by opening an emergency door - yeah, I high tailed it out of the area and played dumb... don't worry, no one was hurt by me being lost and wandering around the building.
The staff at Mercy San Juan were extremely nice (minus one night nurse that Patrick called Nurse Ratchett). It's interesting that even in a hospital environment I found myself having to explain to staff about ALS. It is a rare disease and frankly ALS patients don't wind up in the hospital all that much - there is no treatment so it's only when they suffer a fall or have serious breathing issues that they head to the ER. It's a little disconcerting that I seemed to know more about the disease than the medical professionals. At one point a nurse kept trying to hand Patrick items and I had to tell her "he can't take that from you." - She was very understanding after, but in that moment it seemed a little strange to me.
I was worried when I wasn't there that the call button would move under the covers and he couldn't reach it. I wound up feeding it through his sleeve to keep it near his hand. I think Patrick was the one that relaxed me a bit, he said, "Really what is the worst that could happen when you're not here - heck I'm in a hospital!" Overall, truly the staff was amazing, thoughtful, funny and really smart when it came to moving him around. I learned quite a bit from just watching them.
Shared Hospital Rooms
Patrick had the misfortune of being placed in a shared hospital room initially. Those of you who haven't had the experience of a shared hospital room - basically, you're separated by a curtain so you hear and witness everything happening to your roommate, as well as he witnesses all of your activities (private and otherwise). The first night, his roommate kept the television on 24 hours and because he had limited hearing, it was on loud. The nurses were kind enough to get Patrick a pair of earplugs.
The second day Patrick got a new roommate, a gentleman (I use that term loosely) that after hearing his rantings, swearing and harassment of the staff, desperately wanted pain medications that he ran out of at home. He was angry, very angry at everything and everyone. Patrick and I listened to him for the better part of a day, he ranted when people were in the room and when they left the room. He required oxygen and had his wife sneak him outside to have a cigarette. That was one of the biggest disagreements with hospital staff, apparently "you can blow up the whole hospital doing that." The head nurse at one point came down and told him to stop harassing the staff.
The "gentleman's" story unveiled before us, he was in the final stages of COPD and was given about six months to live. The doctors, nurses and social workers all encouraged him to be put on hospice care. Apparently, hospice has more liberal rules regarding pain medication whereas doctors are limited to prescribe only so many narcotics to a person in a month (if you think about it, it makes sense.) The interesting piece is that after all of this, the "gentleman" and his wife left the hospital refusing hospice. The reason stated was that his wife didn't want people in their home and he didn't want to not be taken to the ER. How people make their decisions are odd to me, but the doctor said "I'd like to see you somewhere other than the hospital, but I think I'll be seeing you again here." I suspect he's right.
Anyway, this experience made me think - Firstly, you have six months to live, how do you want to live it? Does dying give you the right to treat everyone with hate and anger? Secondly, I looked at my husband who is 25 years younger than this "gentleman" and has a right to feel "ripped off" and there he was his usual calm self - chatting with the nurses, bragging about his daughter earning the Girl Scout Gold Award and looking forward to heading home. Truly we all have choices...
Part 2 to come... "How is Patrick Doing? (recent illness aside)
Interestingly I'm going to start with a health issue that is not ALS related, but resulted in Patrick being in the hospital for the past week. This will be a two parter - the first part is about Patrick's current health events and the second, will chronicle his ALS progression since January.
Drug Reactions
Patrick developed a urinary tract infection about two weeks ago. The infection came on quick and the doctor prescribed Bactrim which is typical for these types of infections. The prescription worked well for the first couple of days, the symptoms associated with the infection declined and he felt better. But the third day into the medication he developed a very high fever, headache, chills - just to name a few ailments. Frankly, he was miserable. I contacted the doctor who felt it was likely the infection was just running its course, but to come into his office and have it checked out. We made an appointment for the following day and hoped he would start feeling better.
Unfortunately, the next day he felt worse. So the question comes up, do we go to the emergency room or go to the doctor's appointment? Well, I chose the latter (not sure if that was the "right" decision or not frankly) the physician's assistant didn't really know what to make of his symptoms and she said that doctors can no longer directly admit into the hospital, so we'd have to either ride it out or go to the emergency room. We opted for the emergency room, but stopped by the house to pick up some things (my experience is you spend a lot of time waiting, at the ER). However, when we got home, Patrick was barely mobile and we wound up calling 911 and the ambulance took him to the hospital - which probably got him in quicker, not really sure.
When the ambulance arrived at the house he had a fever of 104, he was completely exhausted and showing signs of dehydration. So they rushed him over to Mercy San Juan Hospital. They got him on fluids right away, but they could not determine why he was so ill. The doctor told us immediately that he would be admitted and they were considering the possibility that he was having an appendicitis.
Patrick spent six days at Mercy San Juan while the symptoms ran their course; he went from fevers, to chills, to a head to toe rash, to sore throat and breathing difficulties. If you read "Dr. Google" you'll see the list of symptoms for extreme reactions to Sulfa drugs, Patrick got them all! As I write this he is still covered over most of his body with a horrible rash. He is a little slower than before but starting to bounce back. Gratefully his sense of humor and calm demeanor never left him.
He couldn't recall ever taking a sulfa based antibiotic, in the past he had been on penicillin derived drugs so this was his first (AND LAST) time.
ALS and Illness
A severe drug reaction is awful for anyone but for someone with ALS it causes a multitude of problems. There is a level of tiredness that all ALS patient's have, the body is always working, so they are constantly burning calories. Most ALS patients I know, take naps during the day due to their exhaustion level. We all know how awful we feel when we're sick and exhausted. Now add ALS to the equation and you understand how utterly zapped Patrick felt. This is still challenging, and as I write this, he sleeps.
His mobility issues were dramatically impacted, he went from walking with a walker to barely able to stand. Getting to and from the bathroom became tremendous battles. It's amazing how far the bathroom looks when you are having difficulty moving. The weakness in his hands and arms was very significant. He was barely able to lift his arms, which when your whole body itches, is a tremendous source of frustration. The movement in his legs has returned but his hands and arms are still recovering.
Of course, the scariest symptom was the effect on breathing. We all have to breath and with ALS the diaphragm is already compromised so adding an illness that is weakening your breathing can make things life threatening quickly. Fortunately, at this point Patrick has not developed the breathing problems associated with ALS so although it was scary it wasn't too severe. We both ponder what the outcome would have been had his breathing already been comprised (I think I'll just be grateful that wasn't the case and not dwell on it too much).
Hospitals, Nurses and Staff
Mercy San Juan Hospital is an interesting place. It's an old hospital that was renovated with a new section attached. The layout is kind of funky, with only one entrance in the new section where you have to work your way through a maze to find the right bank of elevators to the old section, which is where Patrick's room was. I knew Patrick had been there too long when I no longer made the wrong turns and found a quicker exit to the parking garage. The first night we were there I set off an alarm by opening an emergency door - yeah, I high tailed it out of the area and played dumb... don't worry, no one was hurt by me being lost and wandering around the building.
The staff at Mercy San Juan were extremely nice (minus one night nurse that Patrick called Nurse Ratchett). It's interesting that even in a hospital environment I found myself having to explain to staff about ALS. It is a rare disease and frankly ALS patients don't wind up in the hospital all that much - there is no treatment so it's only when they suffer a fall or have serious breathing issues that they head to the ER. It's a little disconcerting that I seemed to know more about the disease than the medical professionals. At one point a nurse kept trying to hand Patrick items and I had to tell her "he can't take that from you." - She was very understanding after, but in that moment it seemed a little strange to me.
I was worried when I wasn't there that the call button would move under the covers and he couldn't reach it. I wound up feeding it through his sleeve to keep it near his hand. I think Patrick was the one that relaxed me a bit, he said, "Really what is the worst that could happen when you're not here - heck I'm in a hospital!" Overall, truly the staff was amazing, thoughtful, funny and really smart when it came to moving him around. I learned quite a bit from just watching them.
Shared Hospital Rooms
Patrick had the misfortune of being placed in a shared hospital room initially. Those of you who haven't had the experience of a shared hospital room - basically, you're separated by a curtain so you hear and witness everything happening to your roommate, as well as he witnesses all of your activities (private and otherwise). The first night, his roommate kept the television on 24 hours and because he had limited hearing, it was on loud. The nurses were kind enough to get Patrick a pair of earplugs.
The second day Patrick got a new roommate, a gentleman (I use that term loosely) that after hearing his rantings, swearing and harassment of the staff, desperately wanted pain medications that he ran out of at home. He was angry, very angry at everything and everyone. Patrick and I listened to him for the better part of a day, he ranted when people were in the room and when they left the room. He required oxygen and had his wife sneak him outside to have a cigarette. That was one of the biggest disagreements with hospital staff, apparently "you can blow up the whole hospital doing that." The head nurse at one point came down and told him to stop harassing the staff.
The "gentleman's" story unveiled before us, he was in the final stages of COPD and was given about six months to live. The doctors, nurses and social workers all encouraged him to be put on hospice care. Apparently, hospice has more liberal rules regarding pain medication whereas doctors are limited to prescribe only so many narcotics to a person in a month (if you think about it, it makes sense.) The interesting piece is that after all of this, the "gentleman" and his wife left the hospital refusing hospice. The reason stated was that his wife didn't want people in their home and he didn't want to not be taken to the ER. How people make their decisions are odd to me, but the doctor said "I'd like to see you somewhere other than the hospital, but I think I'll be seeing you again here." I suspect he's right.
Anyway, this experience made me think - Firstly, you have six months to live, how do you want to live it? Does dying give you the right to treat everyone with hate and anger? Secondly, I looked at my husband who is 25 years younger than this "gentleman" and has a right to feel "ripped off" and there he was his usual calm self - chatting with the nurses, bragging about his daughter earning the Girl Scout Gold Award and looking forward to heading home. Truly we all have choices...
Part 2 to come... "How is Patrick Doing? (recent illness aside)
Friday, April 25, 2014
Notes on Life #5
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| Anthony's Favorite - Captain EO |
It's been a while since I chronicled our family's events so here goes...
Disneyland, the Mouse & Cars Land
We started the year with a trip to Disneyland with the kids and grandkids. Disneyland is most enjoyable when seen from the eyes of a child.The weather was perfect, crowds were small and the grandkids were super excited. Cars Land is absolutely my favorite Disney attraction, the amount of detail that went into creating this land is remarkable. Of course, after travelling Route 66, the funny nuansces that exist from the actual Route make me smile.
We stayed at the Grand Californian nearby allowing us to go in and out of the park as we liked. On the final night, Caitlin and Patrick sat out on the balcony watching the staff in California Adventure test the rollercoasters, bring in stock for the stores and reset the World of Color show from the holiday presentation to the regular production. They must have sat there for a couple hours. If ALS does anything it slows you down, but the appreciation of a given moment is great.
North Coast
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| Bug Eyes - At a Bug's Life Presentation |
North Coast
Patrick and I spent a wonderful four days on the coast near Gulala. We rented a beautiful house that had 180 degree views of the coast. There is nothing like the clear night sky, and the sound of the waves rolling in to give you peace and relaxation. Except for one dinner at a nearby BBQ restaurant, we spent the entire time simply watching the waves. If you'd like a recommendation for a vacation home on the beach - drop me a note, the owner is incredibly nice and the views are amazing. A big thank you to the Blue Shield group - this is where we opted to use the gift cards you gave us!
When Patrick and I were first married and generally broke, Gualala was a beautiful and inexpensive place to stay -- we often stayed at the Gualala Hotel which has been there for years and has a lot of charm (it's for sale now, if anyone's interested...) Anyway, Gualala is as beautiful as ever, although not quite as inexpensive.
Christian is a Spider
Christian had his first experience in theatre this past month. He played a spider in the Alice in Wonderland Jr. play at Roseville Theater Arts Academy. He was the star of the play, well at least from a grandma's perspective. A good friend, Liza Bennett, created his spider costume. The costume was amazing with spider legs that moved as his arms moved. As the day of the play drew closer he was very excited. I think just being part of the production was wonderful for him.
When Patrick and I were first married and generally broke, Gualala was a beautiful and inexpensive place to stay -- we often stayed at the Gualala Hotel which has been there for years and has a lot of charm (it's for sale now, if anyone's interested...) Anyway, Gualala is as beautiful as ever, although not quite as inexpensive.
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| Gualala Coast from the Rental Balcony |
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| Sunset |
Christian is a Spider
After the production he says to me, "grandma I'm retired." But a week later when I asked if he wanted to do the next production the answer was a resounding YES. So, he's come out of retirement to do, "Once Upon a Time." I understand he is part of the group singing "How much is that Doggy in the Window." So, in May we will be enjoying another evening of Christian the Star!
Roxie
The greatest low over the past few months is the diagnosis that Roxie, the family pooch, has cancer. Over the past couple months, she's just not seemed right and we took her into the vet a number of times. After she starting vomiting the vet did some extensive tests and found that she has cancer of the liver and spleen. There is not a lot they can do for dogs with cancer and frankly, Roxie really doesn't understand so we are making her comfortable with steriods, pain killers and antibiotics.
Roxie
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| Roxie |
Dogs are interesting creatures, even when they are obviously in pain, if you pat their head or show them even the smallest attention their tail will wag. They are content with such simple things. As I write this, Roxie lays at my feet, her belly is shaved from the ultra sound and she's thinner than before, but she seems, in this moment, content.
A funny Roxie note... I have to feed her about 8 pills a day... well she doesn't like pills so I've tried EVERYTHING to get her to take them. She's a clever girl, if you put it in food, somehow she'll find it and spit it out. Right now, I'm using hot dogs (she likes hot dogs) and it works pretty well but it may just be a matter of time before she figures out that I'm secretly drugging her and spits them out.
The Grandkids and New Additions
Breaking in the New Van
Things to Look Forward to...
San Francisco, April/May
The Grandkids and New Additions
In addition, to Christian the Bug, Sofia turned one-year old this past month. Her party was princess themed and she had a surprise visit from Belle herself. It seems like just yesterday she was born, she is a beautiful child, full of happiness and smiles and Patrick is her biggest fan.
The exciting news is that we are now expecting our fourth granddaughter in August. There are times I think I'm way too young for this grandparent thing, but I must admit they are funny and make life much richer.
Here are some pictures of the grandkids over the past few months...
Emotional versus Logical
This month we ordered Patrick's power wheel chair. These are quite different than the scooters you see around; they are custom made, expensive and have add ons (like buying a car). We worked with a company that is highly recommended by the ALS Association. They are quite knowledgeable about ALS and the challenges that accompany the disease. Of course, in addition to the power wheelchair we are buying a van to accommodate the chair and ramps for our house.
These are probably the hardest emotional journeys for me. I'm adaptable, but my immediate feeling is one of being overwhelmed. So, you have these big decisions to make and they are important logically, but completely emotionally charged. Although I've never really enjoyed buying a new car, it was always kind of fun to check out the new car, drive it around and decide what options you want. I'm afraid it just isn't as fun when you're buying a disability van. I wish it was, but it isn't.
On a positive note, we did find a van, ordered the power wheelchair and got the ramp situation taken care of in our house. So, all is well that ends well or so they say...
DNA & Genealogy
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| The Force is Strong with these ones... |
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| Great Grandma, Anthony & Christian coloring Easter eggs |
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| Sofia's 1st Birthday |
This month we ordered Patrick's power wheel chair. These are quite different than the scooters you see around; they are custom made, expensive and have add ons (like buying a car). We worked with a company that is highly recommended by the ALS Association. They are quite knowledgeable about ALS and the challenges that accompany the disease. Of course, in addition to the power wheelchair we are buying a van to accommodate the chair and ramps for our house.
These are probably the hardest emotional journeys for me. I'm adaptable, but my immediate feeling is one of being overwhelmed. So, you have these big decisions to make and they are important logically, but completely emotionally charged. Although I've never really enjoyed buying a new car, it was always kind of fun to check out the new car, drive it around and decide what options you want. I'm afraid it just isn't as fun when you're buying a disability van. I wish it was, but it isn't.
On a positive note, we did find a van, ordered the power wheelchair and got the ramp situation taken care of in our house. So, all is well that ends well or so they say...
DNA & Genealogy
My DNA information came through and I'm happy to report I'm not an alien from outer space. Instead I'm mostly British. The surprise is that I'm also Irish - since I've done the genealogy extensively on my father's side, this was a surprise. So, I know that my mother's biological parents were likely Irish. I must admit it's renewed my curiousity on my mother's side so I'm digging around a little bit through the DNA matches on Ancestry.
Breaking in the New Van
Our new van will be taken on our next trip to Denver, Colorado to visit Patrick's family and see some of the places in Kansas and Colorado that the Timmons' Family migrated to in the 1800's. The family bible is actually at a Kansas Historical Society in Lecompton so we'll get a glance at it. Should be an interesting trip.
I hope you are enjoying this lovely spring weather and all is well with you and yours.
Things to Look Forward to...
San Francisco, April/May
Genealogy Timmons Trip, June
New Baby Girl - August
Saturday, March 15, 2014
Finding the Past & Considering the Future
These last couple months, Patrick and I have spent a considerable amount of time researching the past, managing the present and contemplating the future. For us, I think the things that bring the most comfort are areas in which we can take control. With ALS, you don't have a lot of control - instead you are simply adjusting to the constant change. So we are taking control wherever it presents itself and finding comfort in knowing that we are still "the masters of our own destiny."
Traveling Back to the Past
Patrick and I have spent quite a bit of time working on our family genealogies. We subscribe to Ancestry.com so we've started the monumental task of entering and researching our family trees. Patrick has always been interested in his family tree and began research and compiling information on his family years ago. I've never had near as much interest as Patrick and perhaps it's the death of my father but I seem to be all engaged in the family genealogy project of late. I think who we are is based quite a bit on where we come from and who came before us - so it's been interesting discovering where my ancestors came from and who they were.
Included in Patrick's information is a family bible, as well as countless photos & paperwork that he's collected over the years. At one point Patrick provided information to Alvy Ray Smith (one of the founder's of Pixar & apparently a distant cousin) on a book Alvy was working. Alvy researched one of Patrick's family lines, the Durands, all the way back to the 1600s. He published a book and sent Patrick a copy that we are finally getting entered into his family tree. He has some interesting folks in his tree, like Jacob Antrim Timmons who performed in a traveling show as Buffalo Bill.
For my family it's a bit more complicated, although I have a few documents given to me by various folks I really had little information. So, I set out asking folks for information. Kristina (whom I've always thought of as an Aunt, but who is really "the wife of my 1st cousin, once removed") provided me with a letter from my Great Great Grandfather Henry Sanford to my Great Grandmother Erma Sanford - circa 1924. In the letter, Henry Sanford says to Erma "the future of this history will depend on you." Additionally, my mom provided a bunch of information, photos and articles on the family. My mom has an incredible memory for these things.
Now I should point out that one of my challenges is my mom's family. My mom was adopted as a baby and has little information on the adoption. My sister and I have always been curious about my mom's biological family, but my mom to my knowledge never expressed any interest. She was very attached to her adoptive parents and brother. My dilemma is so, how does one pursue family genealogy in the case of adoption, my first thought was that the biological family was really "how I came to be." so I put most of my genealogy effort into my father's side of the family. But that's only 50% of my lineage so it did nag at me.
So, I've been thinking really "what is family" and a story by Dr. Seuss that I use to read to Caitlin came to mind, "Horton Hatches the Egg" if you haven't read it, it's worth a read. Basically, Horton winds up sitting on a bird's egg for seasons until it hatches and it comes out with some bird and elephant qualities. After spending time with my mom this past week, I realized, she doesn't need to know about her biological family because - that's not her family. Her family was Gilbert and Hattie Chandler who adopted her as a baby, raised her and loved her all those years. So, I can't say my curiosity is gone, but my family tree consists of my dad's family (the Johnson Family) and my mom's family (the Chandler Family).
DNA Testing
For Christmas this year, as a gift to Patrick, I had his DNA tested through Ancestry.com. The test is two fold - it provides information on your ethnicity - for instance Patrick is 52% Great Britain, 22% Western European, 18% Irish, 5% Scandinavian and 3% Other. Ancestry provides some migration information and a map of what these areas are considered. Secondly, Ancestry will provide links to other Ancestry folks that have had their DNA done and are considered a "match" with you - they even go so far as to say how close a relative the person is - 2nd cousin, 4-6th cousin , etc. Ancestry then tries to match people in your tree against their tree. It's all quite interesting. So you don't worry you can control your information on how little or how much you reveal to other DNA test takers.
I found it all so interesting, I decided to have my DNA tested also - the results are not back so I can't share with you my information. With my mom being adopted I figure the sky's the limit. On my dad side I expect Swedish and Great Britain - but hey "proof is in the pudding." Every day I log on to Ancestry just to see if by chance my DNA test is completed... it's taking forever (either that or I have no patience). Patrick says it's taking longer than his because they have never dealt with alien DNA before...
Over the past month, Patrick and I worked with an attorney to put together our will and trust documents. The strange thing about doing this is that it actually feels good to complete these items. I think its one of the most therapeutic things I've done of late. With ALS, there are very few things you can control - certainly not the disease, so there is a sense of strength in taking control over end of life decisions. It was a learning experience for me and I recommend that everyone let the important folks in their lives know what their wishes are - don't assume they know.
For me, I've always believed that funerals and burials are for the living and whatever my children needed at my passing was ok by me. Frankly, I kind of liked the idea of my ashes being scattered, some place pretty. It's funny how another person can change your mind though... while all of these decisions were going on, Patrick and I had some important discussions and he reminded me of a number of truths. First, although I don't seem to want a grave site, I always visit my family graves in Susanville when I go up there; I lay some flowers and chat a little to my grandparents, great grandmother and now my dad. I find it peaceful, and I do somehow feel their presence. Secondly, when you're doing family genealogy one of the things you look for are your ancestor's grave sites and headstones - they provide valuable information into your ancestor's history. Lastly, and most important to me was that Patrick wanted us to be buried together.
So... we are taking on the task of purchasing burial plots, selecting a headstone and deciding on funeral arrangements. As strange as this may seem, I've found a lot of comfort in this, I don't want my children to wonder whether they did right by me or add stress to an already difficult time. I've decided in addition to a headstone we will have a bench (there are some real nice ones) to sit by our grave. I figure our descendants can sit and chat with us long after we've passed.
I hope all is well with you and yours.
Traveling Back to the Past
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| Jacob Antrim Timmons - Great Grandfather |
Included in Patrick's information is a family bible, as well as countless photos & paperwork that he's collected over the years. At one point Patrick provided information to Alvy Ray Smith (one of the founder's of Pixar & apparently a distant cousin) on a book Alvy was working. Alvy researched one of Patrick's family lines, the Durands, all the way back to the 1600s. He published a book and sent Patrick a copy that we are finally getting entered into his family tree. He has some interesting folks in his tree, like Jacob Antrim Timmons who performed in a traveling show as Buffalo Bill.
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| Henry Sanford & Carl Ivan Johnson (Great Great Grandfather & Great Uncle) |
Now I should point out that one of my challenges is my mom's family. My mom was adopted as a baby and has little information on the adoption. My sister and I have always been curious about my mom's biological family, but my mom to my knowledge never expressed any interest. She was very attached to her adoptive parents and brother. My dilemma is so, how does one pursue family genealogy in the case of adoption, my first thought was that the biological family was really "how I came to be." so I put most of my genealogy effort into my father's side of the family. But that's only 50% of my lineage so it did nag at me.
So, I've been thinking really "what is family" and a story by Dr. Seuss that I use to read to Caitlin came to mind, "Horton Hatches the Egg" if you haven't read it, it's worth a read. Basically, Horton winds up sitting on a bird's egg for seasons until it hatches and it comes out with some bird and elephant qualities. After spending time with my mom this past week, I realized, she doesn't need to know about her biological family because - that's not her family. Her family was Gilbert and Hattie Chandler who adopted her as a baby, raised her and loved her all those years. So, I can't say my curiosity is gone, but my family tree consists of my dad's family (the Johnson Family) and my mom's family (the Chandler Family).
DNA Testing
For Christmas this year, as a gift to Patrick, I had his DNA tested through Ancestry.com. The test is two fold - it provides information on your ethnicity - for instance Patrick is 52% Great Britain, 22% Western European, 18% Irish, 5% Scandinavian and 3% Other. Ancestry provides some migration information and a map of what these areas are considered. Secondly, Ancestry will provide links to other Ancestry folks that have had their DNA done and are considered a "match" with you - they even go so far as to say how close a relative the person is - 2nd cousin, 4-6th cousin , etc. Ancestry then tries to match people in your tree against their tree. It's all quite interesting. So you don't worry you can control your information on how little or how much you reveal to other DNA test takers.
I found it all so interesting, I decided to have my DNA tested also - the results are not back so I can't share with you my information. With my mom being adopted I figure the sky's the limit. On my dad side I expect Swedish and Great Britain - but hey "proof is in the pudding." Every day I log on to Ancestry just to see if by chance my DNA test is completed... it's taking forever (either that or I have no patience). Patrick says it's taking longer than his because they have never dealt with alien DNA before...
Burials, Wills and Funerals
When my dad died in December, he left no instructions for his burial or funeral arrangements, which made it difficult to know what the best plan was for dad. It's not a period of time where you are fully engaged in planning or are in your "right" mind -- instead you are in the stage of grieving. So, we made the decisions we thought were best, based on various factors. My hope is that we did right by my dad, he certainly deserved it. This feeling of not knowing was a nudge to me to start making plans of my own as I don't want to add to the stress of those left behind.
Over the past month, Patrick and I worked with an attorney to put together our will and trust documents. The strange thing about doing this is that it actually feels good to complete these items. I think its one of the most therapeutic things I've done of late. With ALS, there are very few things you can control - certainly not the disease, so there is a sense of strength in taking control over end of life decisions. It was a learning experience for me and I recommend that everyone let the important folks in their lives know what their wishes are - don't assume they know.
For me, I've always believed that funerals and burials are for the living and whatever my children needed at my passing was ok by me. Frankly, I kind of liked the idea of my ashes being scattered, some place pretty. It's funny how another person can change your mind though... while all of these decisions were going on, Patrick and I had some important discussions and he reminded me of a number of truths. First, although I don't seem to want a grave site, I always visit my family graves in Susanville when I go up there; I lay some flowers and chat a little to my grandparents, great grandmother and now my dad. I find it peaceful, and I do somehow feel their presence. Secondly, when you're doing family genealogy one of the things you look for are your ancestor's grave sites and headstones - they provide valuable information into your ancestor's history. Lastly, and most important to me was that Patrick wanted us to be buried together.
So... we are taking on the task of purchasing burial plots, selecting a headstone and deciding on funeral arrangements. As strange as this may seem, I've found a lot of comfort in this, I don't want my children to wonder whether they did right by me or add stress to an already difficult time. I've decided in addition to a headstone we will have a bench (there are some real nice ones) to sit by our grave. I figure our descendants can sit and chat with us long after we've passed.
I hope all is well with you and yours.
Monday, February 17, 2014
Notes from a Caregiver #1
Throughout the year, I've written about the life of a person with ALS. As I've often said, this is done second hand from the perspective of a daily observer and caregiver, not as a patient. But this blog is different, because I write from my personal experience as a caregiver. This blog itself has been a work in progress for a few months. I've written, rewritten and likely over thought the words. My concern was two-fold, I didn't want to sugar coat it and I didn't want to hurt Patrick's feelings. So this is my disclaimer, this is my perspective as a caregiver and its jaded by my personal situation, beliefs and experiences.
As I've described before, ALS is a thief and the journey is one of perpetual loss. As the disease progresses, the journey of a caregiver changes along with it. Initially, when Patrick received his diagnosis a year ago, Patrick required very little help from me - a button here, or a shoe tied there. Since then, I've taken on more responsibilities and roles.
There are two challenges for an ALS caregiver; first the loss of having a second person help with chores and tasks. As the disease progresses, tasks/chores that the ALS person did, they are no longer able to do, adding to your daily to do list. Secondly, there are new responsibilities added to directly care for the ALS person.
This has been a year of learning, settling into the role of caregiver, managing perpetual changes and creating balance and support. These are my thoughts as a caregiver...
I am not alone...
There are many people playing the role of caregivers, in America, statistics give the number at 65 million (according to caregivers.org). Most are family members taking on the role due to an illness, disability or age of a family member or close friend. It's a big responsibility and not an easy role. For me, it's not a role I would seek and there are moments that I get tired of the responsibility and constant tasks to be completed. In this respect, I'm probably not the ideal caregiver. But if you're wondering from that comment why take on the role - well that's an easy one, because I love my husband and have spent the past 30 years with him. Remember that vow, "in sickness and in health," I sure didn't think ALS was part of the equation, but you don't get to pick the challenges presented, we simply must chose how we respond to them.
There are things that continue to sustain me through this journey. First, I'm pretty comfortable with a live in the moment perspective. Second, I have a wonderful family, good friends, ALS Support groups, and acquaintances that provide support. Lastly, but certainly not least, Patrick's continual gift of humor and strength.
Life in the Moment
Living in the moment has always been more comfortable for me than being a planner or knowing where everything is going in life. This perspective, has not always been beneficial, but as an ALS caregiver it does tend to make life easier. I don't dwell on the past or plan out the next five years of my life - I never really have. In general I just tend to "go with the flow." Now, like I said, in the real world this isn't always the best trait. But as an ALS caregiver it means I don't look at the next five years and require a plan. From a psychological perspective - I think this is what keeps me sane.
Having said that, a piece of advice was given by a caregiver in support group. He said whatever you do stay ahead of the game, don't make decisions because you need something today, plan for things months in advance. So this is my greatest challenge, as things progress you have to put things in place - an example is the lift we installed; you don't want to decide to get a lift on the day that the ALS patient can't take the stairs. Fortunately, for me, I married a planner and even though it must be hard to look out, he tends to be the one to say "it's time to consider _________ (blank)."
Right now we are looking at purchasing a handicap van so Patrick is researching, asking fellow patients and looking at local providers to determine what is the best choice. The need for the van is months away, and it's painful for me - this is where the living in the moment doesn't work - it is hard for me to look and plan for the future.
Friends and Acquaintances
I always knew I was blessed with our two daughters, Caitlin and Corrinne. But now, I really know how blessed I am and that they are a constant source of strength for me. Caitlin is our 18 year old daughter, most people at her age are worried about college, friends, jobs etc. for Caitlin she has all these worries and the added stress that her dad has ALS. She often makes his lunch, puts on his shoes and helps him up. She hangs out with dad when I have lunch or dinner with friends - she makes my life easier and without her, the day to day activities would be quite a bit more difficult.
Corrinne also helps if I need to go out and she married a great guy, Justin, who over the past few months has fixed my fence, changed my tire, moved furniture and added a step to the Ford Explorer (there are many other things but these are the ones that come to mind). I really can't imagine what it would be like without family, so for this I'm grateful.
Additionally, I'm thankful to my sister Denise, who I talk with on the phone - a little more than I use to (ah, come on Neece you know its true). I guess I need to stop saying, you were a mistake - my mother would say a "blessing," but as kids, I told her she was a mistake. - Hey what are sisters for???
There is truth to the statement that "when bad things happen, you find out who your friends are. I don't know how someone could be a caregiver and not have friends and people that support them. There are people that I will always be grateful for knowing and make my life easier.
Here are some of my stories over the past year...
There are some really wonderful people that Patrick worked with at Blue Shield - far too many to list here. But since this is about the life a caregiver I'll share with you a story of one of his co-workers that I'm very grateful to know. You must bare in mind that before the ALS diagnosis I had met very few of Patrick's co-workers - the opportunity just didn't present itself. Well, last summer I got a call from Bren Lee (Vaughn's wife) - I knew from Patrick that Bren was going through chemotherapy for Breast Cancer and was stage 4 (I'm not very cancer knowledgeable, but I understand that stage 4 is not good). Anyway, Bren called me because she said "I know about Patrick's diagnosis and I've read your blog and I really want to do something for you." I didn't know what to say to Bren frankly, I was really awestruck that someone with their own life challenges wanted to "do something for us."
Well, this has led to a great friendship - I don't believe ALS is a blessing (believe it or not I've heard that) but I will say that there are people I've met in the journey that I'm happy to know. In December when Bren heard that my father had passed she called around to figure out when and where the funeral was so she could send flowers (they were quite a surprise, and in addition to myself, my mother was very touched).
As many of you know I'm a 46-year old Girl Scout - proud of it too - yes, sometimes I wear a uniform, I know how to start a fire and absolutely, I can fix you up with some cookies. There is a group of ladies (all old Girl Scout Leaders) that I've been friends with for many years. We've roasted s'mores, run weekend camps, put together events and managed cookie season together. When I sent them news of Patrick's diagnosis, I received some of the most heartwarming responses - how can I help?, Can I make you some dinners?, Call me if you need me... It really made me think what do I need? So, I told them what I'd really like is a monthly dinner. Now a year later it's been such a huge source of strength for me. Generally, it's wine, dinner and good conversation and it's an evening I look forward to every month. The ladies named the group "The Sisterhood of the Old Goats." - Well my old goat sisters - you're the best!
I walked Roxie, our friendly Lab, the other day down to Starbucks. When I arrived there were few outside seats and the "dog area" table was being used. Two ladies chatting at a table said - "we'll watch your dog while you get your beverage." - Since Roxie is SUPER friendly I figured by the time I was back they would be exhausted by the ol' girl, but upon my return they seemed to be enjoying her company. I looked around to find a table and they quickly invited me to sit with them. It was such an act of kindness and I really enjoyed the 30 minutes talking about dogs, the weather and nothing in particular. To these two ladies I say thanks - I don't know your names but I appreciated the moment.
There are so many good people that impact my life - friends that drop cookies and ninjas (thanks Eve), folks that often check in to see how I'm doing, and emails and texts from friends that make me feel connected. It makes such an impact on my psyche - I'm not always the best responder via text or email but always know that I appreciate it!
Counseling and Support Groups
The ALS Association provides a monthly support group for caregivers and ALS patients. I see them as fellow travelers - their situations are not exactly the same as ours but they understand the ALS diagnosis. It's such a unique journey and talking with others that know what it's like who share similar experiences has been beneficial on many levels. Recently, the Association also started a new group for ALS caregivers and patients to deal with loss and grief. I wasn't sure about attending this group initially and I went questioning whether I would continue. As it turned out it was a very moving experience, and it provided me with emotional support with individuals who are living with someone or are ALS patients.
In addition to the support received from the ALS support groups, over the past year I started seeing a counselor and for the first time got a massage. I understand that counseling and support groups are not for everyone, but for me it has helped me with emotional and practical issues in dealing with Patrick's ALS diagnosis. It's incredibly painful to watch someone you love progress with the ALS disease and difficult to manage the emotional ups and downs of a constantly changing life.
Patrick
Patrick continues to amaze me in how he manages the day. He doesn't whine, complain or get angry - and frankly he probably has every right. He has his moments of frustration but they are few. He continues to provide me with a tremendous source of strength. I've always been a little "high strung" and over the years he's tolerated many of my crazy ideas, moody behavior and occasional rants (no I'm not always easy to live with). I am grateful that he still has a great sense of humor, and still seems to enjoy my company.
Finding Grace in the Day
As I've said before the ALS journey is entirely personal, this is true for the patient and the caregiver. How I manage the day is still evolving but I'm grateful for the people in my life that make it easier and richer. In addition to all these things that make life easier, I find writing these blogs therapeutic. Being able to keep a journal has been a great way to chronicle our life at this time and keep in touch with family and friends who want to know how we are doing.
It's been a year of change learning and settling into the role of caregiver. I'm grateful to all the wonderful people that share in our journey and hope you all find grace in the day!
As I've described before, ALS is a thief and the journey is one of perpetual loss. As the disease progresses, the journey of a caregiver changes along with it. Initially, when Patrick received his diagnosis a year ago, Patrick required very little help from me - a button here, or a shoe tied there. Since then, I've taken on more responsibilities and roles.
There are two challenges for an ALS caregiver; first the loss of having a second person help with chores and tasks. As the disease progresses, tasks/chores that the ALS person did, they are no longer able to do, adding to your daily to do list. Secondly, there are new responsibilities added to directly care for the ALS person.
This has been a year of learning, settling into the role of caregiver, managing perpetual changes and creating balance and support. These are my thoughts as a caregiver...
I am not alone...
There are many people playing the role of caregivers, in America, statistics give the number at 65 million (according to caregivers.org). Most are family members taking on the role due to an illness, disability or age of a family member or close friend. It's a big responsibility and not an easy role. For me, it's not a role I would seek and there are moments that I get tired of the responsibility and constant tasks to be completed. In this respect, I'm probably not the ideal caregiver. But if you're wondering from that comment why take on the role - well that's an easy one, because I love my husband and have spent the past 30 years with him. Remember that vow, "in sickness and in health," I sure didn't think ALS was part of the equation, but you don't get to pick the challenges presented, we simply must chose how we respond to them.
There are things that continue to sustain me through this journey. First, I'm pretty comfortable with a live in the moment perspective. Second, I have a wonderful family, good friends, ALS Support groups, and acquaintances that provide support. Lastly, but certainly not least, Patrick's continual gift of humor and strength.
Life in the Moment
Living in the moment has always been more comfortable for me than being a planner or knowing where everything is going in life. This perspective, has not always been beneficial, but as an ALS caregiver it does tend to make life easier. I don't dwell on the past or plan out the next five years of my life - I never really have. In general I just tend to "go with the flow." Now, like I said, in the real world this isn't always the best trait. But as an ALS caregiver it means I don't look at the next five years and require a plan. From a psychological perspective - I think this is what keeps me sane.
Having said that, a piece of advice was given by a caregiver in support group. He said whatever you do stay ahead of the game, don't make decisions because you need something today, plan for things months in advance. So this is my greatest challenge, as things progress you have to put things in place - an example is the lift we installed; you don't want to decide to get a lift on the day that the ALS patient can't take the stairs. Fortunately, for me, I married a planner and even though it must be hard to look out, he tends to be the one to say "it's time to consider _________ (blank)."
Right now we are looking at purchasing a handicap van so Patrick is researching, asking fellow patients and looking at local providers to determine what is the best choice. The need for the van is months away, and it's painful for me - this is where the living in the moment doesn't work - it is hard for me to look and plan for the future.
Friends and Acquaintances
 |
| Caitlin:) |
Corrinne also helps if I need to go out and she married a great guy, Justin, who over the past few months has fixed my fence, changed my tire, moved furniture and added a step to the Ford Explorer (there are many other things but these are the ones that come to mind). I really can't imagine what it would be like without family, so for this I'm grateful.
 |
| Corrinne and Justin |
Additionally, I'm thankful to my sister Denise, who I talk with on the phone - a little more than I use to (ah, come on Neece you know its true). I guess I need to stop saying, you were a mistake - my mother would say a "blessing," but as kids, I told her she was a mistake. - Hey what are sisters for???
There is truth to the statement that "when bad things happen, you find out who your friends are. I don't know how someone could be a caregiver and not have friends and people that support them. There are people that I will always be grateful for knowing and make my life easier.
Here are some of my stories over the past year...
There are some really wonderful people that Patrick worked with at Blue Shield - far too many to list here. But since this is about the life a caregiver I'll share with you a story of one of his co-workers that I'm very grateful to know. You must bare in mind that before the ALS diagnosis I had met very few of Patrick's co-workers - the opportunity just didn't present itself. Well, last summer I got a call from Bren Lee (Vaughn's wife) - I knew from Patrick that Bren was going through chemotherapy for Breast Cancer and was stage 4 (I'm not very cancer knowledgeable, but I understand that stage 4 is not good). Anyway, Bren called me because she said "I know about Patrick's diagnosis and I've read your blog and I really want to do something for you." I didn't know what to say to Bren frankly, I was really awestruck that someone with their own life challenges wanted to "do something for us."
Well, this has led to a great friendship - I don't believe ALS is a blessing (believe it or not I've heard that) but I will say that there are people I've met in the journey that I'm happy to know. In December when Bren heard that my father had passed she called around to figure out when and where the funeral was so she could send flowers (they were quite a surprise, and in addition to myself, my mother was very touched).
 |
| Vaughn, Bren, Me & Patrick |
 |
| Izzie, Charlotte & Deb: some of My Old Goat Buddies |
There are so many good people that impact my life - friends that drop cookies and ninjas (thanks Eve), folks that often check in to see how I'm doing, and emails and texts from friends that make me feel connected. It makes such an impact on my psyche - I'm not always the best responder via text or email but always know that I appreciate it!
Counseling and Support Groups
The ALS Association provides a monthly support group for caregivers and ALS patients. I see them as fellow travelers - their situations are not exactly the same as ours but they understand the ALS diagnosis. It's such a unique journey and talking with others that know what it's like who share similar experiences has been beneficial on many levels. Recently, the Association also started a new group for ALS caregivers and patients to deal with loss and grief. I wasn't sure about attending this group initially and I went questioning whether I would continue. As it turned out it was a very moving experience, and it provided me with emotional support with individuals who are living with someone or are ALS patients.
In addition to the support received from the ALS support groups, over the past year I started seeing a counselor and for the first time got a massage. I understand that counseling and support groups are not for everyone, but for me it has helped me with emotional and practical issues in dealing with Patrick's ALS diagnosis. It's incredibly painful to watch someone you love progress with the ALS disease and difficult to manage the emotional ups and downs of a constantly changing life.
PatrickPatrick continues to amaze me in how he manages the day. He doesn't whine, complain or get angry - and frankly he probably has every right. He has his moments of frustration but they are few. He continues to provide me with a tremendous source of strength. I've always been a little "high strung" and over the years he's tolerated many of my crazy ideas, moody behavior and occasional rants (no I'm not always easy to live with). I am grateful that he still has a great sense of humor, and still seems to enjoy my company.
Finding Grace in the Day
As I've said before the ALS journey is entirely personal, this is true for the patient and the caregiver. How I manage the day is still evolving but I'm grateful for the people in my life that make it easier and richer. In addition to all these things that make life easier, I find writing these blogs therapeutic. Being able to keep a journal has been a great way to chronicle our life at this time and keep in touch with family and friends who want to know how we are doing.
It's been a year of change learning and settling into the role of caregiver. I'm grateful to all the wonderful people that share in our journey and hope you all find grace in the day!
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