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Meet fellow Caregivers - Introduce yourself
Caregivers | Last Active: Nov 12, 2023 | Replies (707)Comment receiving replies
I am the caregiver for my husband, who was diagnosed with 'probably' vascular dementia four years ago, then with Alzheimer's, by a neurologist, then with vascular dementia by a memory clinic PA, then, 'maybe' Alzheimers by a different neurologist. I had to stop working two years ago, at the age of 59, because my husband could no longer be safely left at home alone. We have been together 24/7/365 since then. Looking back, I saw the signs at least two to four years before the original diagnosis, but thought it was due to a medication (statin) he was taking. He is not on any dementia-related drugs. With the average extended period of clarity being, on average, rather short-term, and the possible side effects being ravaging, I can't see them as being a good trade-off. Besides, it seems that, as he ages, if there are bad side effects to a drug, he will have one. If he has a stroke or begins to experience seizure activity due to a 'helpful' drug, it will only make matters worse. With no cure for this diagnosis, and very limited treatment options, temporary in nature, I have decided, at this point, to let nature take it's course while I do my best to protect him and help him through this. My greatest concern, at this time, is that he started having frequent, severe headaches several months ago, which have become a daily occurance, usually all day. The first neurologist said to cut out caffeine (he only has one cup of coffee a day, and otherwise drinks water), the headaches have only continued and become worse. The second physician tried verapamil, but his urine turned very dark - almost orange - so that was discontinued. The doctor then attacked it from the allergy/sinus perspective, with Claritin, but that didn't work, either. He was then referred, on my request, to a neurologist in that clinic system, who has had him on prednisone for a couple of weeks, with a return appointment to see the neurologist's PA this week. So far, that has not worked, either, and there are only two pills left. They will do a CT scan at his next appointment. They can't do an MRI, due to his pacemaker. His pacemaker hasn't paced in over a year. His heart has been working on its own. I would like the pacemaker removed so we can see what's going on in his head, but no one seems to think that is a good idea. And, by the way, I agree with those who have posted on this site, that many doctors show neither the experience, the respect, nor the empathy needed to deal with dementia patients or their caregivers.
Replies to "I am the caregiver for my husband, who was diagnosed with 'probably' vascular dementia four years..."
Good morning @macbeth. I hope your day is dawning with sun and perhaps even a moment of comfort.
Your note hit another chord with me. Doctors and their attitudes. WOW can they be a trying bunch. I often repeated one of my favorite quotes when dealing with them. I mean no disrespect but it was "You know the difference between God and a Doctor? God doesn't think he's a doctor." It helped me manage my emotions with them 🙂 I still believe many doctors are in over their heads with some patients, but simply will not acknowledge that nor worse, suggest alternative physicians to use.
Tuesday I began my personal journey with a new GP. I had refused to continue to see the GP my wife and I had been seeing for over 14 years during my wife's journey with her cancer and my journey with caregiving. It became evident to me this doctor actually had no interest in really understanding my wife and her needs and certainly didn't care to try and understand my situation as a full time, high demand caregiver. We stayed with her for far too long, but also we just did not have the energy to undertake the move to a new Doc until much later, during hospice. Even then she put up a fight! She constantly complained of the work load she had because of my wife's medication regimen. She acted as if her goal was to get my wife medication free and back into society rather than managing terminal, Stage IV brain cancer. It drove me nuts!
On the issue of allowing your husband into studies, I can add a small insight. I know it will not offer any help nor solace, but trials have to be tightly controlled or the outcomes can be suspect. Therefore, before they begin them the doctors must outline who will be in them, who will be control groups, disease stage, etc.. Then they must follow that established protocol to a 'T'. Funding, peer review, valid results, and much more factor in. Not fair I know.
Peace strength and thanks!
@indiana Scott
Man! You nailed it with "What's the difference between God and a doctor?". Right on the head! Thank you! I, too, understand staying with a dr. way too long because it is daunting to start all over again, and then, what if you end up with someone with the same attitude after all that anyway? Ugh!
I understand about the parameters for testing. My point was that they could do separate tests for different stages, instead of, seemingly, working only on early stages. But that's o.k. I'm just clarifying.
Thanks for your support on the doctor "thing". There really has often been an aire of arrogance, and even petulance, that seems to attempt to warn a person to "know your place", that both angers and disheartens me, and worries me that I really must keep "my place" in mind, just in case the doctor is snarky enough to neglect my husband just to show us, or me, who really has the power. It is very difficult to maintain patience and civility sometimes, but so necessary for the benefit of one's loved one. But, again, thank you. It's nice to know I'm not alone in this.
Strength and peace to you and all of the other caretakers, too.
Yep, @macbeth it is a fine line we caregivers often are forced to walk with some of those in the medical community.
A sad commentary, but a very necessary discussion I believe.
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Thank you for the kind words, @hopeful33250. I had a couple of guiding principles, which helped me out. First, I pledged to myself I would not do anything to begin "World War III" with family while my wife was alive and second when attitudes got especially bad, I would reread some passage from Siddhartha. Just a line or two to try and re-center in my own universe.