DH dashing through stage 6 benchmarks

Jazzma

DH, early stage six AD, has been home from memory care for about 2-1/2 months after a year-long stay. It's generally been going well until the last two or three weeks. He's started sundowning again after a long break, very agitated, 'hyper-oral' per Tam Cummings, hallucinating other people in the house/yard, starting fecal incontinence, holding lengthy conversations with someone else at night, often in a sort of 'fugue' state. He's generally healthy and strong. Mentally it's like he's running hurdles through the stage 6 checklist. Today hospice sent over phenobarbital to help with his agitation, which slowed it down a bit. Nighttime drugs (Seroquel, Trazodone) seem to have finally put him down for the night.

Have any of you experienced this kind of sudden decline? His general health seems pretty good, which makes me wonder where we are. Like everyone, I guess — how much longer will he live?

Thanks for your insights.

Carl46

It happens. People who see my wife only occasionally, like our optician, noticed a decline in the last six months before I Placed her in MC. OTOH, something like a urinary tract infection can cause a sudden decline, which is reversible when the infection is cleared.

There is no way to tell how long he will live. One poster reported his wife has been in MC since 2017, but I think that is rare.

LindaLouise

My DH is 69, and been in MC for a year. He is still basically healthy, but has most of the issues you mentioned (beginning fecal incontinence, agitation, sundowning) - all reasons I had to place him last year. He has gone through a lot of the stage 6 benchmarks over the last 18 months, and it seems, fairly quickly. I had to place him when I became so sleep deprived I realized neither of us would survive if I didn't make some changes. No one seems to have any answers - and its scary to be spending vast amounts of money monthly, with no idea of how long. And it feels wrong to even consider this when its my DH of 47 years and I love him so very much. So we grieve, worry, live with real stress and fear (financial, health, future) and guilt, always the guilt, with no idea whether we need to survive in this crushing space for weeks or years. It feels like no one but you all here understand any of this - doctors, family, friends - no one seems to get this. So grateful to be able to come here and know I'm not alone.

Quilting brings calm

My mom was at stage 4 for several years, moved into or was moving into stage 5… then it was like she fell off a cliff. She was on oxygen for COPD. We called hospice in to help with showers, dressing etc. the minute she actually heard the words hospice, (we hid it from her for about a week until a staff member at the AL blurted it out), she went into a deep anxiety and depression. Even though we repeatedly told her she wasn’t dying, she wouldn’t believe us. she pretty much quit eating. We really don’t know if she would have quit eating without hearing the words hospice or not. She lasted 3 more weeks.

harshedbuzz

@Jazzma

I am sorry you and your DH have reached this spot. It's hard to know ahead of time what dementia will look like on any individual.

My dad and 2 of my mom's sisters had dementia at the same time and it struck me how "the same, but different" it was for each.

My dad had a lot of cognitive reserve and a challenging personality going into dementia. He was diagnosed fairly late with Alzheimer's and WKS. He progressed quite slowly initially; I saw symptoms as early as 2005 but he wasn't diagnosed until December 2016 in stage 5. He blasted through 5, 6 and 7 by April 2018. He was agitated and aggressive through stage 6. When he hit stage 7, his whole demeanor changed, and he became sweet and even loving. His body physically changed; he'd lost a great deal of weight and didn't really look like himself at all. But he was ambulatory and very verbal until he died from complications of aspiration pneumonia.

My mean aunt had VD and was diagnosed stage 5-ish in 2116 as well. She broke a hip a few weeks into her stay in an AL. This experience left her in late stage 7 bypassing stage 6 entirely. She was the first of the 3 to passing doing so in the fall of 2017.

My good-natured aunt clearly had symptoms of her VD as early as 2003 when her DH died suddenly. She wasn't diagnosed until 2008 when her sister obtained guardianship after finding her in a cold dark house in about stage 4. She actually improved a bit with the meals and social interaction of MC and the progressed slowly. Her doctor added the ALZ dx when she was about 85 around the time she entered stage 6. She was there for about 3 years before progressing to stage 7 which lasted 2 years. She also had a couple of periods during stage 7 where death looked imminent (not eating, drinking, unresponsive) before rebounding and returning to her stage 7 baseline. She finally passed in January 2018 after another period of over a week without food or water.

HB

Jazzma

https://alzconnected.org/discussion/comment/243793#Comment_243793

You have expressed this so eloquently. Thank you.

SDianeL

my DH was in memory care due to my cancer diagnosis. Once he went into a wheelchair and became incontinent he became aggressive and had to be medicated, then became bedridden. He would wake to eat and go back to sleep. He stopped talking except for yes or no answers when he was awake and eating. He began having trouble swallowing. They changed his diet to soft then to puréed. They couldn’t control his blood sugar or blood pressure. One day when I visited he had aspirated on pudding. He passed away 2 days later from aspiration pneumonia. How the disease progresses depends on the part of the brain that is affected by the disease. My DH had Posterior Cortical Atrophy. Which is near the brain stem. There is really no way to know. I would ask the hospice nurse. They should be able to answer any questions you may have. 💜

Arrowhead

My wife had a sudden decline in "22 for reasons unknown, then again last year as the result of a UTI. Other than that, is has been a slow decline for almost 9 years now.