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Introductions: Are you caring for someone with dementia?
Caregivers: Dementia | Last Active: Aug 16 2:33pm | Replies (762)Comment receiving replies
Hello. My husband has been referred for a PET scan and to a geriatric psychiatrist after a diagnosis of fronto-temporal dementia. He first had a neuro-psych evaluation last fall which indicated severe short-term memory problems and neurological "spillover" . So, then he was referred to a neurologist who after extensive testing gave us the diagnosis of FTD and has put in an order for a PET scan and referred us to the geriatric psychiatrist who is part of a "Mood and Memory Clinic". It will be at least a year before we get in with the geriatric psychiatrist---they are so backlogged. It's so frustrating! The PET scan, according to the neurologist, is a functional MRI---- it shows exactly how the brain is working. It shows electrical activity throughout the brain. We are waiting for our insurance to approve this test. It is very expensive and the neurologist warned us that some insurances balk at covering it. Everything is overwhelming to me right now. My husband almost seems to be in denial about everything. Either that, or he just can't understand. If I try to talk about the reality of our situation he gets angry at me. He has always been a very smart man. He has a doctorate degree and has taught psychology at a college. He also had a successful private practice counseling service for many years. He retired from that last year. Now his thoughts are very disorganized although he still has his "smarts" . It's hard to follow his train of thought. Some days he seems like his old usual self which makes things even harder because day to day life is unpredictable.
Replies to "Hello. My husband has been referred for a PET scan and to a geriatric psychiatrist after..."
Hi @snowbloom, my thoughts are with you. My husband was diagnosed with Alzheimer's in 2019, but I knew something was amiss at least two years before that. He had always been very articulate, but he stopped knowing the right words to use in conversation. Prior to diagnosis, he had an MRI that showed changes in his frontal lobe and neuropsychological testing. He was a driven, type A, sales type when younger, competitive and sometimes difficult. Now he is easygoing and gentle and has handed all responsibilities over to me. He broke his hip about two months ago, was out of our house for a month, first in the hospital, then rehab. The physical therapists are pleased with the progress he's making at home. It's challenging to explain to him why he has to do his leg exercises every day. I have some serious medical conditions myself, but I am the one he depends on so I have to stay strong and be there for him. I try to keep terror of what the future holds at bay.
Are you responsible for everything in your household at this point? I resisted that for a long time, but knew it had to be done.
I'm wondering what help the PET scan will be in your situation. Are there treatments that can result from the findings? My husband was on donepezil for a while, but we discontinued it, when there were no more benefits. Now he is on a low dose antidepressant, Citalopram, which relieves some of his anxiety. I think he would spend the whole day in bed if I let him. Wishing you the best, Teri
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Hi @snowbloom I know every patient and their disease is different, but I know my wife never wanted me to talk about her situation. It was OK when she would bring it up, but not me. I know for her she felt her disease was a burden for me, she hated me 'reminding' her of her mortality, etc. When it came to doing certain things (like rewriting our wills, POAs, etc.) I made sure I bought it up as something I wanted to do and not because of her situation. I can't remember how many times I'd begin a talk with "I read something in the newspaper today that made me think of...." and then made sure I suggested we, both, do what needed to be done.
You are right, the unpredictability is tough! I remember my wife's neuro doctor telling me "we really don't know all that much about the brain, and when it is 'broken' we know even less."
Strength, Courage, & Peace