Progression or something else

cdgbdr

My DH, 72yo, was diagnosed with moderate dementia this year but has been having memory and word finding problems for years. He started on oral Aricept and did not tolerate so started the exelon patch. About a month ago, he started talking about people being in the house. He was at home alone while I worked at that time. We took a vacation and during that time he was surprised to learn we were married. We have been for 31 years. Anyway, it was a pretty sudden progression. I had a urine done and need to repeat it since it was contaminated. I asked about stopping the patch since he'd been on it about 5-6 weeks, NP wasn't really in favor. I stopped it yesterday and will get a urine again next week. He saw a primary care nurse last week, had neuropsych testing last week as part of his overall geriatric assessment last week also. I am a masters prepared nurse so have some knowledge. I understand that travel and illness affect dementia but this started before that. Thoughts?

SDianeL

it sounds like he has progressed to having Stage 5-6 behaviors. My DH started having hallucinations in those stages. If you rule out medical issues like UTI, look up the document that lists the behaviors in each stage so you can see where he is. Doctors are reluctant to give stages since there can be overlapping behaviors. If you haven’t done so, I would read the book “The 36 Hour Day” which was recommended by a nurse and really helped me.

cdgbdr

Thank you for your reply. I'm working through these things and appreciate support.

Lkrielow99

cdgbdr, I just read your post and going through rapid decline also. My DH 75yo was diagnosed July 2023 and three weeks prior had flown our airplane. He had a lot of mistakes but the plane flys 200mph and has a complex glass panel. It was helpful that I also know how to fly the plane and made corrections. Now 14 months later he was admitted to psych unit to monitor and find meds that help with his agitation, pacing all night and frustration. He has been hallucinating for about four months and wandering. He has had some wild panic attacks. A week ago he had such a panic attack and walked out the door. When I found him he was at the highway near the interstate. I brought him straight to ER and was admitted to psych unit to evaluate. The geriatric psychiatrist says he needs to be moved to memory care. WTH, no one can pinpoint why such a huge decline. The nursing staff said yesterday I needed rest, that I’ve been doing this alone and it’s time. She said he doesn’t know I’ve been to visit and I need a break. He speaks but nothing that makes any sense. Sentences that don’t connect to any thought. This was faster than I even dreamed could happen. I guess no one knows how or why this disease progresses. I hope sharing my journey helps. Much love to you and please find your peace.

cdgbdr

Thank you. I'm so sorry for your situation. I still work full time and may not be realistic but don't want to retire. This seems to be sticking since he's still not aware of our 35 year relationship and 31 year marriage. I'm interviewing a caregiver today and have family and friends lined up throughout the week for a few hours a day. This is so unpredictable and sad. My best wishes for you. Do your best to care for yourself.

SDianeL

https://alzconnected.org/discussion/comment/222902#Comment_222902

something else I thought of. He should not be left alone for any amount of time. I would start looking into memory care facilities and get on waiting lists if they have them. This disease is terrifying and heartbreaking and can progress very rapidly or can progress slowly. No way to know. That was the advice I was given on and I didn’t take it. I wish I had. Please keep us posted.

cdgbdr

Thank you. I am going to hire the caregiver and have an appointment with adult day rep next week. I will keep assessing and working on this.