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.


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