Blessing and A Curse

As time continues to move forward, so does the need for increased mechanical devices to help with Patrick's care. There is no magic pill for ALS, but there are many gadgets, mechanical devices and technologies that help with care and symptom management as the disease progresses. The mechanical additions generally make things easier, but come with an emotional cost. They are a kind of benchmark in the ALS journey. A reminder that you have now progressed to a certain point, it's a difficult psychological game. Additionally, for a caregiver, these devices come with new responsibilities, instructions and "a learning curve."

To be honest, the past few holiday seasons have been difficult with my father's death last year and Patrick's diagnosis a few days before Christmas the year prior. This year I hoped to have an "ALS free" Christmas, and I attempted to accomplish this by putting off the delivery of a Hoyer lift until after Christmas. Unfortunately, it just wasn't meant to be and Christmas Eve I received a call from the SuperHealth Company that a brand new Trilogy Ventilator was set to be delivered to us and whether we could fit them in that day. No, I told them, we'll take it next week and it was scheduled for New Year's Eve instead. It was at this point that I realized the ridiculousness of an ALS free holiday, frankly ALS is a part of our daily lives and no amount of wishing will change that fact.

On New Year's Eve, the respiratory therapist brought our latest piece of equipment, the Trilogy Ventilator.  The therapist was quite helpful and provided over two hours of instruction and set up for the ventilator. I'd be lying if I said I was thrilled with the new responsibilities around the ventilator. After the therapist left I had the feeling of "deer in headlights." With each new device comes new responsibilities; including operational, cleaning and coordination of supplies. This tagged on to a realization that we are now starting a new stage of ALS disease progression and I'm overwhelmed. This is my side of the equation, I can only imagine Patrick's side when these additions come through the door.



Trilogy Ventilator

Patrick needs the ventilator to help with his breathing overnight. The first night, Patrick opted for not using his new ventilator and we put it off for the evening. This is our typical MO, we stare at the equipment for a few days before actually starting to use it. It's the psychological piece, if you leave something in your house for a period of time in the same location, it starts to become part of the furniture or perhaps you develop a certain level of acceptance, either way the stress level goes down and it becomes part of your daily routine.

ALS requires many mechanical devices for daily living. We have a power chair, electronic lift, hoyer lift, ventilator and shower chair to name a few. I will say I am grateful to live in this time and not the time of Lou Gehrig. Although, my preference would be to "cure this awful disease," there have been tremendous advances in mechanical medical supplies since Lou's time. I often wonder how caregivers and patients managed. Wikipedia has an interesting section on wheelchairs with photos of antique chairs; these must have been so "wonderful" (sarcasm)! Here is the link: http://en.wikipedia.org/wiki/Wheelchair: 

The other challenge with mechanical devices is that not all are covered by Medicare or health insurance. This is one of the reasons you see such a huge price tag attached to the care of an ALS patient. If you remember from past blogs, we renovated our bathroom, purchased a power chair accessible van and added a lift to our home. None of these things were covered by insurance and we continue to use our savings and retirement funds for these items. I must say that I am grateful that we are able to afford these things because many people can not. I believe that there should be a consideration with Medicare and health insurance plans to cover these types of expenses. Frankly, as a terminal disease, for a health insurance company, ALS is pretty inexpensive in regards to claims. The cost of Patrick's claims are four clinic appointments a year, medications for symptom management and a ventilator machine.

Loaned Shower Chair

We were fortunate in December, to borrow a shower chair from the ALS Association loan closet. The loan closet has been a tremendous blessing for us and we've used it for a variety of items including a shower chair, walker and scooter. But with the loan closet, you are at the mercy of what is available at the time. With the shower chair though, we really lucked out because the cost of the shower chair we borrowed is about $3,000. One of the greatest challenges with caring for an ALS patient is showering and this chair has made it easier and safer.

We live in the electronic age with gadgets, mechanical devices and technology. Sometimes I'm not sure if it's a blessing or a curse, but it does make life easier for providing care. For an ALS patient living in this time period versus an earlier period, such as Lou Gehrig's (late 1930's), has it's advantages. I know in our ALS journey there are still mechanical additions to make and we will adjust as we have in the past; with a little grace and a little kicking and screaming!

Hope all is well in your world. My sister has taken to texting me a quote a day, which I really enjoy, so I leave you with this thought:

"Our greatest foes - and whom we must chiefly combat - are within" - Miguel de Cervantes

Grandchildren and ALS

I was blessed as a child to live within a couple miles of my grandparents home in Susanville CA. With my buddy, Suzie Miller, who lived next door, we would walk uptown always making a stop at my grandparents house for cookies and milk. The world was a little different back then and we had more freedom than children do these days.

Patrick and I have four wonderful grandchildren (Anthony, 10, Christian 6 11/12, Sofia 1 9/12 and Elizabeth 6/12) that live within the same distance as I did to mine growing up. Although, I doubt they'll ever be able to walk over for milk and cookies we still see them on a regular basis.

They are funny to be around and make us laugh with the way they see the world. So how do you explain ALS to a young child? With the initial diagnosis, our daughter Corrinne, spent a considerable amount of time trying to decide how to, how much and when to tell them. At that point she only had Christian and Anthony and they were 8 and 5.

When you are first hit with an ALS diagnosis, it's difficult to manage, so initially time is necessary to gather yourself and think through your own feelings. At this point you're still trying to figure out what ALS is and what the diagnosis means. Generally, with ALS you do have time to ponder - there is no surgery or treatment to start, the progression doesn't happen over night and grandpa won't look any different a couple days later. So, Corrinne took her time before telling the boys, she and I had a number of conversations and she told them a couple months after his diagnosis.

When my grandmother died, Corrinne was about 8 years old. This was quite difficult for me and a tremendous loss. At the time I didn't understand it but Corrinne would ask questions about my grandmother's death for a number of years after her passing. It was not my favorite conversation as it seemed to tear open a wound that I found painful. Fortunately, I read an article about children and grief and it described how children can only understand grief to the extent that their brain is developed, so it's common for them to ask questions as they get older based on their level of comprehension. This was certainly true with Corrinne and it helped me to see it from her perspective and help her through the process of grieving.

I think the boys understanding of ALS with its losses and changes is similar to Corrinne's in the journey of understanding. They comprehend as they go and manage information to the extent that they can based on their own development. The initial news was quite painful for Anthony, he cried and asked quite a few questions on ALS and what would happen to grandpa. Christian had less of an understanding due to his age, but still understood that the news was not good.

Let's be honest, ALS is a weird disease, even from my perspective I don't fully understand some of the symptoms and challenges that Patrick faces. I am just an observer. I know the boys don't totally understand things either. When the lift was installed, Christian asked why can't grandpa take the stairs. I don't remember the explanation we gave him, but I suspect it wasn't sufficient because in an effort to be helpful he decided to show grandpa how to go up the stairs. "See grandpa, just put one foot on each step." Justin whispered to Patrick - you can slap him anytime you want. Which gave us all a good chuckle.

Patrick used special silverware to feed himself for quite a while and we had two sets. At every Sunday dinner, the boys would fight over who got to use the second set - they were cool and different. It's the perspective of a child. At Christmas dinner this year Anthony and Christian both wanted to use the special sets for dinner. At dinner Anthony realized that grandpa wasn't using them anymore, and asked why isn't grandpa using them. We explained that grandpa can't use his hands for eating anymore - a well of tears filled in his eyes. The realization of the loss and ALS progression hit him in that moment and it was quite sad to see his face acknowledge the understanding. 

We took the boys out for clothes shopping recently- it was one of our Christmas gifts to them. Since they go to a school that has uniforms - buying clothes is pretty straight forward but we always make the event fun going to the mall, letting them select a shirt of their choice to wear at home and going to dinner. They both selected a funny sweatshirt... and we went to one of their favorite dinner places, Black Bear Diner.

On this outing, I started teaching them how to latch grandpa's chair down in the van and Patrick has them push the buttons on his chair when he needs assistance. They like to be helpful and Anthony and Christian both expressed pride in helping grandpa.

I think the outing got Christian thinking because at dinner he said, "I remember when mom told me grandpa had ALS, I went to my room and cried all day. I'm sorry you have ALS grandpa." It really came out of the blue, but in hindsight I think it was his observation of Patrick and being helpful that led him to thinking about it. I wish my grandkids didn't know what ALS was, but they do. I am pleased, however that they are learning compassion, kindness and empathy for others. These are the unexpected gifts of a horrible disease. 

Since the outing was such fun with the boys, I'll leave you with these photos... (a reminder to myself that the world is different from 4ft tall)

Patrick and Anthony

Anthony Bouncing.

Christian Riding his Trusty Steed.

Yes, the one on the left is Anthony.

Best wishes for a happy 2015!