hospice, meds, changes, etc.

pookabera

Hi y'all. Just checking in and updating on the progression of things. I'm positive my dad (83, general dementia diagnosis) is transitioning to a new stage. Sleeping more, shorter attention span, eating less. He doesn't chit-chat with me like he was before.

Things moved quickly with our switch to the new PCP & health group. First nurse visit/intake was last Friday, we told her we were interested in the hospice-route as things progressed. We had a hospice evaluation Tuesday and we're on hospice service now. First hospice nurse visit is this afternoon. Nervous. Never know how he's going to react or how it's going to dictate the rest of the day.

Does not feel great trying to get care for someone to relieve some of the stress and pressure on us when he consistently refuses care. So naturally now I'm pre-worrying about him getting discharged from hospice.

My mom is running on fumes. He sleeps better and more deeply during the day or he's awake and just laying there and when we check on him he says he's going to sleep and doesn't want anything.

The nurse from the hospice eval recommended seroquel for agitation, but I'm grappling with the level of agitation or what agitation means in terms of using it. I don't know, I know we're literally seeing a nurse today, but I like checking in with you all too.

Just having a hard time - assuming a lot of it is a resurgence of grief and being tired 90% of the time. Also still reeling from the emotional whiplash of feeling like he was on the brink of death a week ago when he didn't eat for almost 3 full days and then coming back to this new baseline.

It's one of those things where you go, go, go and do, do, do and this is what the situation is and what my daily life is like and then it hits me every now and then. I don't what to do or how to cope because I understand he has dementia and that this is it, there is no getting better. I want him to be comfortable and at peace. I also don't want this to drag on. The nurse from the eval said patients can live on sips and bites for a long time, which is terrifying me. But I also know that patients with dementia have a lower life expectancy after a fall. It's all just a lot.

JeriLynn66

Your Hospice Team are there to help manage symptoms to maximize comfort and quality of life… share your concerns; ask questions. Let us know how the visit goes.

jfkoc

FYI....I knew my husband would hear Hospice and fear he was about to die so I told him that Hospice had changed under Obamacare and now provided home health services. It worked.

pookabera

https://alzconnected.org/discussion/comment/188132#Comment_188132

Yes! We're being explicit with our hospice team to not use "hospice" in front of him. We've only had one person out so far.. but she did a great job of communicating with him to avoid a shutdown or refusal. She said she was here to make sure he's comfortable and safe.

Battlebuddy

Hospice won’t drop because he doesn’t want care. The only thing they evaluate staying on or off is decline. As long as there is decline he will stay on

they will answer all your questions and concerns.

Take the Serequel . It was a god send for my husband . You can always try it and see if it helps him or not.

forbarbara

I wasn’t sure about seraquel because my MIL got so drowsy on it. But hospice convinced me that reducing her anxiety is part of making her comfortable. And they were right - she is so much more contented these days.

one of the best things about hospice for me is that I can be honest about my hope that she doesn’t linger. (It helps that she was very clear about that back when she was clear.) So ask all your questions and get some support for you and your family. Hospice has social workers and chaplains too - lean on them if it’s helpful.

hang in there.

pookabera

https://alzconnected.org/discussion/comment/188159#Comment_188159

This is helpful, thank you! Now the tricky part is getting him to take it :)

pookabera

https://alzconnected.org/discussion/comment/188162#Comment_188162

This was similar to the conversation we had with the hospice nurse yesterday. I was feeling guilty about the seroquel because if it's effective it will relieve some of the difficulties my mom and I have with him, but ultimately it will help him be more relaxed and comfortable. The one thing we had that he still enjoyed and was interested in seems to be too much for him cognitively (the television and his movies) now.

Thank you. I may reach out to the social worker or seek a therapist soon just to help collect and organize my thoughts about everything.

forbarbara

Good luck. Let us know how it goes

JeriLynn66

This is helpful, thank you! Now the tricky part is getting him to take it :)

Hospice can advise you regarding which medications may be crushed, dissolved or sprinkled on food or in drinks.

SDianeL

so sorry about the roller coaster that is this disease. Your concerns are valid and most of us would be asking the same questions. Hospice is awesome. They have counselors that will help you. When my Mom went to hospice after a massive stroke, I wrote down all the questions I had and asked every one of the Hospice nurse. They patiently and compassionately answered every one. My Mom could no longer swallow and we had to make the decision and sign a paper to withhold food & water. Hardest decision I ever had to make but the right one based on my Mom's wishes. She passed peacefully a week later. Hospice called me once a week for a few weeks after to check and see how I and the family were doing.

pookabera

https://alzconnected.org/discussion/comment/188287#Comment_188287

Thank you, I appreciate the words of support. I'm glad my mom and I are on the same page about the more difficult decisions. I also feel like we chose to move forward with the hospice evaluation at the right time, it feels like things are on a downslide. Not that they weren't always.

ButterflyWings

https://alzconnected.org/discussion/comment/188210#Comment_188210

We have been crushing Seroquel and giving in a spoonful of applesauce, stirred into his juice, on top of a dollop of peanut butter, etc. The respite team at MC started that so I just continued it. The pill crusher I have is from CVS and works like a charm.

Before that, I use to hide his 25mg pill in a blueberry and give it in his morning cereal. Just adding a few berries at first to be sure he got the "loaded one". Also gave his larger Seroquel pill in whatever I could hide it in once the dosage increased. He was not always swallowing his meds which I didn't realize until a day would go off the rails and I'd find it in his pocket or under the bed, etc. Taught me very early on, to watch him swallow meds completely (without letting him know I was watching lol). Crushing is so much easier if possible.