An ALS Caregiver's Letter

August 7, 2009

Dear Family and Friends,

I know you get a daily e-mail from Dick, that is full of inspiration and positive updates (or even funny tales that are often half truths but great for a laugh)! He was blessed with a brilliant mind and he continues to use it in many different ways.

But, because he has always kept our personal life private, it is the case that you rarely know what is happening in our everyday life. I thought you may have wondered what it is like living with this dreadful disease and as such, I wanted to share some things with you.

On Jan. 15th Dick was diagnosed with ALS----he had known for sometime that something was going on with his health, but he nor the Dr’s could really figure it out. In some ways that day, he was relieved to know what he was fighting; in fact, he came home and said “Sweets, sit down, I have something to tell you”-----We cried over this devastating news---- and then we started making a game plan. We have enjoyed 30 years of marriage and while we have the same values, our interests and even our friends have been independent of our marriage. This was never a problem for us, as we didn’t depend on each other for our own happiness but rather allowed one another room to grow and enjoy the things that were of interest to our personalities. After the ALS news however, this arrangement was going to be different ---- we would have to face this challenge as a team. No longer would we be able to do our own “thing” as this disease would impact both of us. We plugged along during the first few months and hired a friend to help us several hours each day. Many friends and family offered suggestions and support, and I continued my work in a professional job that I dearly loved.
In the very beginning, our Drs. warned us of the future and ideas as to how we should handle situations. I have taken their advice to heart and have followed it to the letter as I have been Dick’s Caregiver----realizing that I am not skilled in the medical field to give him the formal clinical attention he needs. HENCE, we decided it was best that I quit my job at the end of June and put to use the information that I had personally been gathering the previous months and hire the professional assistance that he required.

Dick’s “man-cave” was downstairs and we decided we would bring all his favorite things upstairs and place them wherever he chose. He wanted the back 2 bedrooms, and although the openness of our living room area would have provided more room, it was NOT his choice and in this example (among many others) I stress that Dick’s mind remains strong despite his weak physical body. With the help of good friends and neighbors we have made many changes to our home that now support an individual who has no use of his limbs and no ability to physically care for himself.

As for me, I have one room I use personally to think, plan, work and relax. As Dick’s Caregiver, the most important thing to me is making sure he is well taken care of, providing him with as much happiness as possible, and allowing him space to enjoy some of the people and things that he has enjoyed during his life. . Recently, we hired CNA’s from 9 am to 11pm – 7 days a week. In addition to taking care of Dick at night and sleeping in a hospital bed next to him, during the long nights I am often repositioning his arms and legs and helping him move in ways an able body takes for granted but in Dick’s case he can not do for himself. Even during the day, I or the CNA’s listen to him from rooms other than his bedroom via a “baby monitor” to ensure that we
can hear his requests and simple needs such as breathing (he is on a BIPAP machine round-the-clock). I’m sure that in the near future, we will need formal 24 hour medical care. Needless to say, the “private” life we enjoyed for decades prior to the diagnosis is long gone what with the number of clinical personnel we now have in our home; physically there are times for Dick that this is taxing, but for me, it is challenging from more of an emotional and mental perspective and as such, I guard whatever privacy I am granted or can grab and it is often in the company of my dear friends and support system having a cup of coffee, or if Dick has friends visiting, I may retreat to my room – simply times for me to “recharge” and resume the Caregiver journey.

In conclusion, the past 8 months have been a whirlwind – some days fly by while others drag on indefinitely it feels. From Dr. appointments, healthcare visits, meals, laundry, errands, unforeseen happenings in a day, both Dick and I remain as positive and resourceful as ever. As his Caregiver, I believe we have as much normalcy in our lives as possible as I continue to care for both of us. Many times someone calls to ask me about Dick’s health, our business affairs, an opportunity for visiting, etc., and I insist that they talk to Dick directly as I reiterate that there is nothing wrong with his mind. He will tell you he is “fine”---and as was the case before ALS, he is never one to complain and since the diagnosis, we believe that despite his circumstances that we are blessed. Please continue to call and visit him. Again, treating him with dignity and respect honors him (as always) and me, too, and it is in this spirit that I close with this update and ask for your ongoing prayers.

Warmest thanks,
Carol