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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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • somuchlove
    4 years ago

    Oh Donna, this made me cry. I am committed to a man that is my best friend as is still working full time with MS. He has nasty bouts of depression – and right now – it is the worst I’ve seen him. I research the hell out of things just as you said and have even contacted his insurance at times to help him – as i TOO am an HR professional like yourself, so I understand benefits much better and can talk the talk. I am advancing my career as much as possible for in the case he can no longer work and that we can live a fulfilling life together. Finding your writings here have been a godsend. I was just researching therapists that I can go to so I do not fall into a depression and can be his strongest support he would ever have. I want to give him the time of his life while he is still well. there are days you wouldn’t believe he has MS. Then there are days where oh yes, it rears its ugly head. Just thank you – I could go on. Obviously I do need to find support. 🙂 I look forward to reading more. Thank you for sharing. I admire all you do.

  • Donna Steigleder moderator author
    4 years ago

    Thank you so much for sharing that. I wish you and your best friend the very best, taking each day for what it is, and holding each other up when the times are tough. God bless you both.

  • Gordy
    4 years ago

    You truly are a star, and your tireless dedication is amazing. As someone who was diagnosed with Progressive MS last year, I can understand the ‘denial’ aspect of things, but acceptance is the first step in moving forward.
    I think it is amazing that you have both moved forward together,accepting and overcoming the many challenges in your path.
    Blessings to you!

  • Donna Steigleder moderator author
    4 years ago

    Thanks, Gordy.

  • north-star
    4 years ago

    Emotion plays such a big role in one’s approach to discovering the cause of symptoms. It must have been so hard on him, knowing how MS impacted his father and family. You and he became a team through your careful persistence; that could not have been easy. From here (I read all your posts) you deserve a gold medal, trophy, chocolate in abundance, a band of angels singing your praises, for helping him manage his disease while keeping your marriage together.

  • Donna Steigleder moderator author
    4 years ago

    Wow, you made my night! I think our faith is really what pulls us together and keeps us going when the times get tough.It has really given us hope and answers to our needs more times than I can say.

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