I see it has been two weeks since I blogged. This shocked me as I seem to have missed a week somewhere. I chalk it up to just how busy I have been. I actually went to the doctor for a six-month checkup last week and we did not talk about my health for more than one minute. The rest of the 30 minutes I was there was spent talking about my husband and his Alzheimer's Disease. I even forgot to mention the bladder infection that had come back.
Doesn't this just sum up the life of a caregiver? Not much time for ourselves. Don't get me wrong, I do not resent this. I am just tired of being tired. Yes, I do know about respite care and I do have help five days a week and she stays over three of the nights. I am still exhausted. Then again, I was exhausted from my FTD long before we knew about my husband's Alzheimer's.
Before I get bogged down in my life, I want to try to answer a question I have been getting a lot lately. "Does FTD affect your immune system?" I found some information about this on the web, but nothing really definitive. I read several articles and results of medical studies. Unfortunately, most of it beyond my comprehension. One fact that I did find repeatedly is that the tau protein build-up creates tangles in the neural cells which triggers the immune system to kill those cells.
I must be clear here, I have no scientific or medical education. I have been involved in the medical field throughout most of my life, but on the business side of things, not medical. With that in mind, while the articles and studies were way over my head, everything I read mentions the immune system either in the origin of the disease or the destruction of the affected brain cells.
When I hear questions about the immune system being affected by FTD or if a weakened immune system contributes to it, I suspect the answer is yes to both. I know myself, that my immune system has been weaker since the onset of FTD. I have experienced Hodgkins lymphoma, increased sensitivity to irritants and I never get a simple cold. The colds always turn into more serious issues such as bronchitis and pneumonia. If I am exposed to contagions, I am affected and become ill.
I apologize that I could not find the answer to the questions. I am sure the information is out there and that there are people who understand it enough to answer it. If any happen to read this, please let me know.
Now, back to the happenings in my life. My husband's Alzheimer's disease is still worsening quite rapidly. Even the doctor is amazed by how fast. His legs are nothing but skin and bones, literally, and he has much difficulty walking. He even struggles to move himself on the bed.
I finally took our doctor's suggestion and allowed her to contact Hospice. The nurse came to evaluate him and was certain he would qualify. She promised so many different forms of help, all at no cost. Unfortunately, when she examined him, he perked up and made a joke and remembered her name five minutes after she had told him. Duh, she had a large name tag on and the joke was not funny. Anyway, they declined him for services because they were not positive he would die within six months. Of course, he has not shown any signs of that kind of recollection since she left.
So then I thought of Palliative Care. It seems that this less populated area of the state is not educated in it. It seems it is lumped in with Hospice Care. If you know me, you know I don't give up. The doctor has now referred me to Home Nursing to see if they can offer any help at all. Wish me luck on that because before they will come out, he must see his doctor. So on Thursday, we will attempt that.
One thing that may be of interest to you... A major health organization from a large city, about 100 miles away, has been buying up hospitals and healthcare businesses. They own our local hospital, they bought our doctor's practice, they own Home Nursing and Hospice. They even own a medical supply company that includes "durable medical equipment."
When we see the doctor, I will ask about private hospice organizations and request she order a hospital bed and some additional equipment. I will be getting these items regardless, but if the insurance will pay, I would only need to pay 20%. Since I already pay $600 of in-home help, I would really appreciate it if they will, but won't hold my breath. All of this has been my Plan B. I hope I don't have to come up with Plan C because I am running out of ideas.
I now have a better understanding why families place their loved ones in facilities. What if I didn't have time to do six loads of laundry a day? What if I had children or other family members to care for? Something must be done. That something must include assistance for those above the poverty level as well as those below. I write my legislators, but never see any improvement.
I will not place my husband in an institution. He was in a nursing home for a couple months last year and it was a horrid experience for him and for me. Placing him outside the home is the very, very last resort in my mind. I pray I never have to choose that option, but I have to understand that it may eventually come to that. Caring for his dementia while coping with my FTD is unbelievably difficult at times. I pray I never have to make that choice and I pray for all of those who have had to make it.
Dementia is not easy. I used to thing FTD was worse than Alzheimer's. I don't believe that any longer. They each (and all other forms of dementias as well) have their own difficulties and perils. None of them are easy.
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