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

Caitlin:)

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.  


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

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!

Izzie, Charlotte & Deb: some of My Old Goat Buddies

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!