My Journey (so far) as a Caregiver
I am going to digress from the 2-year story (so far) of my husband’s stroke rehabilitation to jump to some very useful things that we have discovered just recently. Perhaps these ideas, or some variation of them, could be helpful to you.
My husband has suffered terribly with his stroke. In addition to the loss of normal physical mobility and some cognitive ability, he gradually developed thalamic pain, also called central pain syndrome or neuropathic pain. This is savage pain that affects only some people after a stroke, those with involvement of the hypothalamus area of the brain. It can appear months or years after a stroke. I sympathized to some degree but because he had lost some of his ability to inhibit his thoughts, he complained a great deal about his many disabilities including the pain. This barrage of woes coming at me at what seemed like a steady stream (not true, but that’s how it felt) was exhausting, discouraging and terribly sad. I think my brain defenses finally had to ignore some of it in an unconscious effort to remain sane and mentally healthy.
I had spent almost two years already trying to fix many, many facets of his daily life from a zillion trips to stores to find the right socks, shirts, pants, humidifiers, eye drops, etc. There were so many appointments with therapists and specialists for his vision and sinus problems. We tried recipes galore and gradually bought every kitchen gadget known to man to help puree his food so he could swallow it. We even solved the biggest issue of all, the big C --- CONSTIPATION. Anyone with lots of medications understands the problem. (After trying all sorts of over-the-counter medications we actually solved that problem with a fairly natural daily combination of prune juice, split pea soup, flax seed in his cream of wheat, flax seed muffins that we liquefied and only two small stool softeners daily. He gets tired of the same routine but he prefers that to being constipated. You can probably relate to how jubilant we felt when we finally achieved regularity.) We had solved so many problems but my helplessness to do anything about his pain was wearing me out psychologically.
Two months ago, when I was asked to write an article for the Rocky Mountain Stroke Association web site in honor of Caregivers’ Month, I began writing in earnest and soon discovered that I had lots more to write than could go in one article. It had to become a series or perhaps a book. Frank thought that was a great idea. I told him I would write down his words for the book so we could help others understand what he was going through. What an impact that had on both of us – an unforeseen blessing. As I wrote, he felt that his thoughts were being validated and I felt like his complaints were going somewhere other than onto my shoulders. It was like magic. His depressing monologues no longer wore me out. We both felt empowered. I eventually bought a laptop computer so I could type anywhere in the house as he talked and because I can type much faster than I can write on paper. This certainly does not need to be done as an avenue to writing a book. It could be part of journaling. Writing down the survivor’s thoughts could be part of communicating with relatives or friends or doctors. In our case, the validation of his feelings didn’t really make the pain go away, but it helped him feel understood and that was huge. I sometimes e-mailed his thoughts to his doctors as direct quotes.
Another unexpected benefit of this dictation process was a greater willingness or even eagerness on my part to research his situation. I had been so discouraged and overwhelmed by his complaints before that I seemed to have no choice but to listen and ignore. After all, I was out of ideas to help and I didn’t want to sink into the mire of his depression. By the way, we had tried many medications for depression with no success. Our newfound technique of writing his complaints helped me to feel more distanced from them and I could see them more objectively.
Thus the research began. I scoured the internet for information on thalamic pain and ordered books to read. I found one particular article that he felt described him exactly. It illustrated the consuming nature of the pain. It gave good reason for his not wanting to be touched. It explained his grouchiness. I made 50 copies of the article and began giving them to all of our friends and family and to his doctors and nurses. Most of them had not ever heard of this kind of pain. Each time someone came to our house to visit, Frank would ask, “Did you give them a copy of the article?” It mattered to him that people understood. His lament had often been, “You just don’t understand. No one understands.” I guess we all want to be understood and this new chance for my husband really helped him. I also found that it helped me because so many people had been eager to give me advice about how to handle him and I usually felt that they didn’t understand. They felt I should just make him go to more activities. Just insist that he treat me better. Sure. Such comments only made me feel inadequate and ineffective in my caregiver role. Once they read the article about his pain, they treated both of us differently.
Check out Central Pain Syndrome Alliance www.centralpain.org/index.html
So, think about whether either of these ideas could be tweaked for your situation. Could you write or type your survivor’s feelings or complaints to help take the pressure off yourself? Or could your survivor write those feelings? Could you find a way to better inform your friends and family about what your survivor is experiencing?
Additional web resources for caregivers:
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