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Spouse's Recent Diagnosis of Fronto-Temporal Dementia
Caregivers: Dementia | Last Active: Apr 27, 2022 | Replies (9)Comment receiving replies
Hello @snowbloom I echo @becsbuddy welcome to Connect. I'm Scott and I was my wife's caregiver and my MIL was also diagnosed with frontotemporal dementia. It is a challenging diagnosis for sure!
I'm sorry to read of the myriad of other health challenges your husband is struggling with. As a fellow caregiver, I can certainly understand your feeling of being overwhelmed by this all. His aphasia must make this all especially difficult for you to have to guess what he needs.
When does your husband get his PET Scan and will his regular doctor interpret it for you or do you also have to wait the year for the geriatric psychologist? Has your husband's doctor been of any help with directing you to local support options such as a local Alzheimer's Association support group or given you specific suggestions for how to help you manage all your husband's needs? Does he use a CPAP for his apnea?
Strength, Courage, & Peace
Replies to "Hello @snowbloom I echo @becsbuddy welcome to Connect. I'm Scott and I was my wife's caregiver..."
Hello. Thank you so much for your response. We live in a very rural area and programs and services are limited and mostly require driving a distance. I am just starting and slowly learning how to advocate for my husband. Up to now he has resisted my involvement in his healthcare. I just started going to appointments with him. I also have started managing his medications for him (filling a weekly medication dispenser). This was necessary because he had started getting confused about when he had taken his meds and a couple times he took a double dose! I keep all his meds in a lock box now. As far as the PET scan/ psychiatrist: we got a letter from the Mood and Memory clinic saying they received our referral and unfortunately have a very long wait list. They are scheduling a year out. They said they would call us when an appointment was available. I asked to be put on a short-call or cancellation list which they were happy to do. Fingers crossed there. My husband does have a CPAP but he doesn't tolerate it. He recently had another sleep study because we thought he might be able to get an "Inspire" device which is like a pacemaker implant for breathing. But my husband's apnea is not just obstructive, but also central nervous system-related, so he is not a candidate for that. He may need supplemental oxygen at night. His O2 saturation becomes dangerously low about 30 times a night! Who knows how that is affecting brain function As far as his diabetes--- that has become a big challenge because he has become very impulsive about eating. It just feels like a lot to deal with. Everything takes time.
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Thank you for all your advice and information. Right now, I am drowning
with all the issues with his Dementia and now his heart failure. His
neurologist did send me lots of info for support groups and right now I am
overwhelmed with everything so I need to get my bearings and get myself
ready to go forward. For me to do this, I need to get organized and set up
files for each category: Dementia and Heart Failure. Then spend some quiet
time with meditation and prayers. I don’t have a lot of time so I need to
start right away. I don’t have much time to devote to any support groups
right now. Just seeing the emails supporting me is all I can do and hope
you understand.
You mentioned a PET scan and a geriatric psychologist? I haven’t heard
about either one. Are these the tests and counseling he needs to have?