I'm confused (again)

secondcor521

My Dad has Alzheimer's/vascular dementia. He was diagnosed three or four years ago, has been in memory care for two years, and on hospice for 8 months.

He sleeps a lot. Probably 20 hours a day on average - he's awake from about 7:30 to 11:30 in the mornings. He gets out of bed about half of the mornings.

He has lost a lot of verbal ability. He's understandable (if confused) sometimes, but mostly it's not possible to understand what he's saying. I can identify words but they don't form coherent sentences or thoughts.

He doesn't participate in social activities much any more.

He eats about two full meals a day. His weight is steady.

He's had a cough / breathing issues the past week or two. They're giving him, in no particular order, for the breathing issues: chest x-ray (clear), prednisone, Robitussin DM, 4x / day nebulizer. These things seem to be helping.

A few times he's had really low blood pressure (like 80/45) in the morning which has responded to hydration (up to 110/70).

He's getting more agitated lately so they're giving him medicine for those episodes.

I worry about him and think he is not doing well based on the above but they tell me he's still doing OK. But they also generally will always hedge and say nobody knows. Which I know is true; it's just hard to deal with.

Mostly just venting I guess.

Maru

Sounds to me like you are pretty well informed on how he doing. Good for you for making sure that you know what's going on. He's on hospice and on comfort care…still, you see your dad slowly failing. That's tough on you. Prayers for you on this leg of the journey. Be what comfort you can be for him.

secondcor521

I'm over there almost daily because I'm worried about him. The attention is good; the worry isn't.

I'm puzzled by the hospice and nursing opinion that is notably more optimistic than I am. They're professionals and have more experience, so mentally I know I should probably shift my viewpoint more towards theirs. I'm not 100% sure why I don't other than that I was trained by my Mom to think that worry is somehow protective - if we worry enough the bad stuff won't happen.

H1235

https://alzconnected.org/discussion/comment/265914#Comment_265914

I wonder if they are just trying to be positive for you. He is in hospice.

ARIL

I am sorry for you and your dad. His situation sounds a lot like my own dad’s, although my dad is not yet on hospice (he didn’t qualify a few weeks ago). Every stage of this disease is hard, and this stage is introducing yet new difficulties. I worry too—mostly because I don’t ever know if we should be doing anything differently to help his quality of life. At this point I am never sure when to visit to try to catch him awake. My own work schedule is not too flexible.

Thinking of you.

SDianeL

I would trust hospice. Both statements can be true. He’s doing “OK” and “nobody knows.” If he’s eating 2x a day and his weight is steady maybe that’s what they mean by he’s OK. What they mean by “nobody knows” is that PWD in late stages can rally and do well and then have a steep decline. We know how you feel. So sorry you are going through this. Hugs. 💜

secondcor521

Thanks everyone.

My sister and BIL are in town this weekend and I think them getting a first hand impression of him will be helpful to me as another data point.

secondcor521

I think what was really bothering me about this before was that the hospice people seemed to not be as concerned about my Dad's decline as I was, which led me to think that I was just worrying too much. After all, they're the professionals with a lot more experience than me. My Mom was a worrier and I am too but I'd rather not be as much of one to the extent possible.

Well, today the hospice folks, after checking in on my Dad and based on his decline, offered me and my sisters a sit down care conference with the nurse, the social worker, and the chaplain to prepare us for what could be coming soon. Among the discussion was them explaining to us in general terms what approaching death looks like. They also discussed in rather specific terms what to do immediately after his passing, such as calling them, spending time with my Dad if we want to, and asking which funeral home we are planning to use.

So while I'm sad about going through this part, I'm actually gratified and relieved that I'm not excessively worrying and I was just a week or so ahead of them in terms of recognizing his health status.

Quilting brings calm

In terms of my mom, hospice demurred on telling us she was dying until they thought it would be in the next 10-days to two weeks. I don’t know if that was because they weren’t sure or just didn’t want to tell us sooner than that. They did tell us though just as they said they would.