Caregiver Perspective: Stages of Caregiving
I have not always been a full time caregiver. As I look back over Lynn’s journey through the maze of MS progression, I have had different roles along the way.
On the Outside Looking In role
For several years before he was diagnosed with MS, I watched his symptoms develop from afar. He would mention an occasional problem with foot drop or weakness in his leg. I would recommend he see a doctor but he assured me it was “just the heat” or “sciatica from sitting on his wallet.” Knowing his father had MS, I would suggest he see a neurologist and he would always say his doctor had ruled that out as a possibility. It was evident that the suggestion of possible MS was not an acceptable one and that I should keep my opinions on that subject to myself.
The Interferer role
Gradually, the symptoms occurred more frequently and in more areas of his body. I watched and could no longer stay silent and insisted that I start attending his medical appointments so I could understand what was happening too. He didn’t want me to come but after a heated debate, he gave in. He shot daggers in my direction when the doctor asked him how he was doing and I piped up to contradict his, “just fine,” to say he was not fine but was having trouble etc., etc., etc. My interference lead to a referral to a neurologist, testing for MS and finally, the dreaded diagnosis.
The Researcher role
Still unwilling to talk about MS, Lynn needed information; however, he was afraid that if he learned what to expect, he would develop all the symptoms he heard about and would become an invalid like his Dad. Where I picked up all the handouts available in the doctor’s office and promptly started an internet search, he removed the materials from his sight and had me shut down the websites if he caught me reading them. He didn’t want to hear anything I read and absolutely did not want to discuss it…but, he needed information. I learned to just wait. He eventually asked a question here and there and soon I would happen upon him reading an article on the web. I implemented some of the things I read; asked questions about others at the doctor’s office and eventually helped him obtain the information he needed in the way he needed to receive it.
The Listener role
As he came to accept that he had been diagnosed with MS, he would occasionally need to talk. He mainly talked about his Dad and how his condition had progressed; about his fear of not being able to be there for his son; about his son being “next,” and about what our future would be. I would just listen. I would remind him much had changed in MS care over the years since his Dad was diagnosed and assured him that no matter what, I was there to go through it with him.
The Advocate role
I learned that Lynn didn’t like to ask questions for fear he might hear something he didn’t want to know so instead I became his advocate. If he was struggling with a new symptom, I would first see if he would bring it up but if not, then I did. I made sure that his doctor was well informed of his situation and that he got the treatment, resources, and information needed so he would be as healthy as possible. I also took on Social Security when he was denied disability. I researched the cause for the denial and appealed, appealed, appealed representing him each step of the way until he was granted disability (by that point he was dependent on a wheelchair and needed me to position all his limbs).
The 24/7 Caregiver role
Then came the “fall” where he was unable to get off the floor for three hours, followed by a misdiagnosed kidney infection, aspiration pneumonia, and almost full systems shutdown. After being in the ICU on three separate occasions and coming close to being full time on a respiratory, I became his full time caregiver. I now take care of all his needs—physical, emotional, financial—as well as taking care of our home, our vehicles, working full time and managing care for both of us. At any point, I wear different hats and perform different roles; whatever is needed to keep us both moving forward. I’ve learned many new skills; sharpened others but now have an arsenal of tools that I didn’t have at first to help me overcome the challenges we face.
I’m sure I’ll put on other hats and achieve even more roles as the years go by because the progression of his condition also becomes the progression of my role. We have adapted and changed together and will continue to do as we face whatever lies ahead of us.
How many specialists did you see before finding "The One"?