← Return to Spouse's Recent Diagnosis of Fronto-Temporal Dementia

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@snowbloom

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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Replies to "Hello. Thank you so much for your response. We live in a very rural area and..."

Hi @snowbloom It IS a lot to have to deal with! My wife used oxygen nights and we had the machine in our house for years. First, it was a tank system, then we kept that as an emergency backup, and went to a much quieter, more mobile, concentrator. It helped her immensely at night and while she didn't like the nasal prongs, she became used to having them just under her nostrils and that did the trick to keep her oxygen level higher.