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Anyone felt frustrated with doctors and trying to find a diagnosis?
Caregivers: Dementia | Last Active: Jul 14 5:06pm | Replies (19)Comment receiving replies
I am new to this group as of a month or so ago, and rarely comment but read through when I have some free time. Which is rare. Becky, I too have had many different diagnoses for my husband. In 2019, we saw the first neurologist for some word finding problems and after a very short assessment the Doc declared that he had early onset Alzheimers, and we should "get his affairs in order." My husband continued work as a mechanical engineer. Later as his speech was becoming more problematic, we did in depth testing at UCLA and were told the same thing. After open heart surgery to correct an undiagnosed defect that had reduced the blood flow to his brain by a large amount, he improved. Then in 2022 we finally both got COVID (despite many vaccines, it was just our time...) and he had a stroke, brain surgery to remove a clot, and boom- back to severe aphasia. To this day his blood pressure and cholesterol and calcium scores are perfect. He made blood clots when he had COVID. His current diagnosis - GP and new Neuro agree- is Primary Progressive Aphasia and Frontal Temporal Dementia. Aphasia is just a type of FTD. But now he has the behavior component as well as the terrible speech and comprehension difficulties. He needs assistance showering and dressing, sometimes he puts his shoes on his feet and the sock on his hands. It comes and goes. He no longer can use the tv remote, microwave or, thankfully, a cork screw. He likes wine...he can have some, but not too much. Anyway I think he has some Parkinson's symptoms starting too. I finally got the Neuro to order a fresh MRI, and the GP is referring us for an updated Neuro psych assessment. I just don't think anyone ever really knows for sure, we can just monitor the changes and look for clues. I think the MRI might show some TIA's, or shrink because he has lost many abilities in the last 5-6 months. He is only 65. I am thinking ahead and researching good memory care facilities just in case, and we are relocating to Phoenix from Redondo Beach to be closer to our daughter and grand children. I need the support, and the joy of watching the littles. There are way more resources in PHX than in my area. There is practically a memory care on every corner! Becky, just do what you can do. No guilt. Enjoy that your husband seems happy and content with his games and naps. When he is up for it, share memories. When he is napping, do something for you. Get help,if you are able, and go to lunch with a friend or get a massage! Hire a cleaning service once or twice a month so you are not a full time care giver AND the maid. Sending hugs.
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We live in a "rural healthcare" setting and don't have many specialists near us so my husband has only had a mini mental state exam administered by a nurse in our family doctor's office. He was diagnosed about a year ago with mild cognitive impairment. For several months I tried to get him to think about seeing a neurologist, geriatrician or neuro-psychologist. He has repeatedly refused to go for further testing. The nearest specialists are 3 to 4 hours away or further. An appointment with one would mean at least a 3 day trip for us. Currently, he is being treated by our family doctor. He shows all the classic signs of Alzheimer's disease. He sleeps 12 to 14 hours a day and naps in between. He denies having memory issues and yet he knows he is forgetting a lot. He even points out articles for me to read about Alzheimer's! He eats cookies and other sweets and soft drinks all day long! The most common form of dementia is Alzheimer's Disease and I am finally comfortable with this diagnosis. I have given up trying to get him to travel for further testing. If he had a Lewy Body dementia or frontal-temporal, etc. I would probably push harder for a specialist appointment.
He is a happy man, he loves playing with our two small dogs, he reads constantly and keeps up with the news and at this point, does not have any behavioral issues. He can still dress and groom himself. He still mows the yard, although it has taken a week to finish the backyard. I am looking for someone to take over this chore for him. I see signs that his cognitive issues are worsening this last couple of weeks. We just had a visit with one of his children and he is struggling more now. The visit was fine, but this child is a take-charge type of person and he was dreading the visit. Now he is displaying signs of anxiety so the doctor has increased his anti-depressant. I agree with @jmg60. Now is the time to take care of yourself. You can only do so much. A dementia support group might also be helpful if there is one near you.
My guy (84 yrs old) is living in his past regularly so he talk about his memories, we look at pictures and enjoy some relaxing time together. My focus is on his quality of life. I can't change what is happening. I do make sure he has regular health appointments, I call the doctor when we are facing a new issue. He is at a stage in his life where major medical interventions such as surgery could be a major setback, leading to more disability or death. I am not sure how well he would even tolerate an MRI or CT scan now. We took care of our legal documents almost three years ago after he had a TIA and Pulmonary Embolisms in both lungs. I am so glad the legal issues have been taken care of. It has been a relief for me and has taken a load of worry off my shoulders.