Hubby recently entered hospice care, which changes everything

I just found this forum, after posting a question about caregiver support in the general Q&A area. This place is wonderful! Been a long time since I've checked in here, and had forgotten how incredible it, and the people here, are.

So, hubby. Elderly, multiple health issues. I guess I started my caregiver role when he started agreeing for me to attend doctors appointments. Through the years, and time came for palliative care. More time passed, and last week, on the advice of the palliative care nurse, we switched to hospice.

Even before we went with palliative care, I entered into anticipatory grief. Last summer was brutal. Lots of bouts of crying jags, depression, and more.

So here we are, today. Week 2 of hospice care. I'm not a fan of the hospice team. For now, I'm giving them, and myself, some time. I might just be missing the palliative team. Or the hospice team might just really suck that much, and I'll end up either going back to palliative care, or finding a different hospice team.

Things I'm currently struggling with:

does hubby even really need hospice care at this point? If yes, it's extremely early days, and this will be a long term thing. Nothing "imminent". Too soon to tell.

Attitudes and opinions of family (mostly his) and friends. He's only just started telling his family he's now in hospice care. As his health has declined over the past two years, there's been lots of unhelpful chatter from those around. I get where they're coming from, and I know they're just trying to help, but man, are they really bad at it!

My current thinking is, to refuse to discuss it with his family / friends. Not in a nasty way, really, but the dynamics have been that they all come to me for info, details. Partly because he is at the confused / disoriented often stage. That's a dynamic I want to change, because, self care. Clearing some things off my plate, and dealing with them is something I can easily give up. So, yeah. My mantra is "ask him if you have questions". Problem with that is, he's giving out incorrect info.

Another thought I'm having is, when they come to visit, to absent myself. Again, self care. When others are with him, that's a good time for me to take a break, go do my own thing. Relax, recharge, handle things away while I'm not having to worry about him being left unattended. Hospice people agree with that....but family, not so much. They arrive, I leave, go take a nap, get on computer, come here, go for a walk, do some gardening, take a ride. They see that as rude.

They're good people, really. I don't want to blow up my relationships with them. But now that things are changing so much, I'm needing to devote more time to my own mental health issues and stability, and self care. That's the kind of stuff they've never understood, really, and that they aren't being very tolerant of now.

Are there better ways to handle this stuff? Are there things I'm not thinking of?

I’m so sorry you’re going through this.

I wish I could say something to help. One thing that occurs to me, for the filtering down of information could you have some central info point like a WhatsApp group to have crucial info posted? If this is something you would find stressful could you delegate the task of running such a group to someone who you trust? You’re absolutely right, it’s not on to keep asking you questions when you’re dealing with your husband’s welfare and your own well-being, and it’s not appropriate now that your husband is asked either.

My heart goes out to you.

Maybe the hospice people could deal with the visitors a bit? I guess they cant say a lot because of HIPAA as far as details about his situation, but they could say stuff like, "we encourage the primary family member to take advantage of visits to refresh themselves. So we appreciate you coming to visit, it really helps both of them." That makes them part of the team.

My suggestion would be to start an account at caringbridge.com and tell all the family you will post a daily update. This will help you and the family, but you will need to tell them tat this is where they can find out info.

I'm so sorry, dear one. I think hospice used to be for people who were probably going to pass away around six months or fewer months . I've had relatives in it before. I would think it would be a lot of support--and of course, people can live a long time on it.

@Deejay14, I've recently stumbled upon the Caringbridge site. I wasn't sure it would be helpful to me, but I'll check it out again now that I'm in a calmer state of mind. @Travelinglady....I've always heard great things about hospice care. That's why I'm kind of confused that I'm finding it so....less than. Time will tell me, I suppose, if it's just this particular organization, or my own mixed feelings, or the timing of it that I find "off".

At this point, I'm starting to suspect that I'm just feeling "whine-y". Had hoped some of the weight might be lifted off me, with hospice, and I'm not feeling that relief (yet), so, having trouble managing my disappointment. On the flip side of that, I know that it's entirely on me to manage my own mental health issues, and do the work I need to do to keep myself strong and regulated. I just get so tired of the daily struggle of that.

BUT. I have spent the last few days outside doing yard work, which is a really good thing for me. I've got an upcoming appointment with my primary doc, too. Might be time to consider going back on citalopram for a bit.

Update time. I'm still not appreciating hospice. I'm still thinking it's stemming from my disappointment, in what I'd hoped for, versus what it is. I keep having thoughts that what they are doing is making things harder for me, not easier. But....that's me....my mind. Which is a battle all on it's own. They have managed to get hubby to start using a quad cane, which helps. They've got a wheelchair here now, for when he gets to where he has to use one. They've got a toilet seat that is a bit higher than the toilet we had, and he has said it's helpful. They got the defibrillator turned off, which was a concern. So, yeah. There's been benefits received. I guess I need to spend more time realizing, and appreciating, the "wins", and continue to try to manage the emotions stirred up. Meanwhile, I'm carrying around a boat load of bitterness, and frustration, and aggravation, and sadness. If I dig deep enough I'll probably uncover some guilt mixed in there, also.

So I guess what I'm realizing is, what I need, is what they aren't equipped to provide. My mental health issues aren't things they are set up to deal with. Silly me, looking to the specialists in dying to seek assistance for the struggles of living.

I did create a caring bridge page, for the fam/friends. As they are being told he's in hospice, I've been directing them to it. Only 2 so far seem to have even gone to it. Still, I guess it's been helpful to me to have started it. I'm wanting IT to be "all about him", and so sometimes am struggling to keep my own feelings out of it. Just....report.....updates. Needs. Requests. Why? Because I don't really want to post my thoughts and feelings out there to the others. That's what I come here for. :-) A safer place, for me.

Today was a rough day. I've not been doing great at handling all my emotions, and mine triggered his. I don't think it was necessarily a bad thing. He's been spending a lot of time reminiscing, and today, once he got into a highly emotional state, he started processing long buried emotions from way back in his childhood. Expressing feelings he's never shared with others. Well, that is stuff I certainly can relate to. Hopefully I was even able to help him, some, once I was able to get out of my own head, and realize what was going on with him. He seemed calmer, more at peace, after.

Man, but this is a hard rough road. But I keep reminding myself, I'm choosing to go down this road with him. It's not my road, really - it's his. And I want to light the way for him, help to smooth it out as I can, for him. I've got this. Even when I stumble, even when I fall. Because I can, and will pick myself back up, and keep on going.

The hospice team should include a grief counselor or social worker for the family. I can understand if the person was not helpful -- that can happen sometimes. But at least there should be someone.

My wife was in hospice (at home) for several weeks, and then transitioned back to the land of the living. It was a lot of work for me. It still is, occasionally.

In an earlier post you mentioned leaving when your husband had visitors. I can definitely relate to this! It's so important to get away for self care.

You also mentioned the ordeal of keeping everyone up-to-date on your husband's condition. One thing I learned was to designate one or two reliable people to do this for you. One could be from his side of the family; the other, your side.

Yes, there is a social worker. I'll just say he wasn't helpful for me. Hubby enjoys his visits, so, good enough, I suppose. Although he hasn't been here in three weeks. I'll ask the nurse about it when she comes back next week. Having a single point of contact for the family for updates worked well in the past, when dealing with acute issues. Not so much now. That caring bridge website seems to be working out for me.

I've also set up a weekly schedule for us. Well for me, really. It's got lots of flexibility into it, but also designated ME days, too. I'm struggling a little with the guilt, in that I'm not giving him my entire focus for every day, every minute. I tried doing that. He was happier, but my bitterness and resentment went overboard, and I had to pull back. Struggling too with his push back, his anger, over stuff like I'll sit outside in nice weather, rather than inside with him. He chooses to not go outside, so I'm trying to let him live with his choices.

I've point blank told his entire family that what he needs is contact from them. Visits if they can, calls if they can't. There was an uptick for about two weeks....and now, silence again from them all. Yet when a friend of his called recently, he refused to speak with him.

I've pulled back from some of my wife's demands. At first I felt guilty. But then I'd see her get herself a snack or a drink refill when she was too impatient to wait for me to finish a chore.

It occurred to me that if she could be self-sufficient, she should. By helping her too much, I'm allowing her to atrophy.

SquarePegGuy - how do you manage to do that? Pulling back? I've been trying to do that for a while, but it's still not really working out for me. Today, perfect example. Instead of getting up and saying "what do you want for breakfast?" I left him to it. I hung out, chit chatted a bit, then went outside and worked in the yard pretty much all day. I come in around 8 pm, to find him sitting at the table looking like he could keel over any minute. At this point, I'm hot, and grungy, and exhausted, and figure out he has eaten NOTHING all day. Heck, I've not eaten all day either. I am so full of bitterness and resentment at the moment. What had been a good day went to hell in about 10 minutes. I'm now at war with myself. Half of me is saying just accept that he will not lift a finger to feed himself, and plan on being here every day, and fix him something to eat every morning, every night, despite his complaining about not wanting to eat. Raise hell with him until he does eat. The other half of me is saying no. Step back. Stop doing that. He CAN eat. So if he chooses to NOT fix something for himself, so be it. He's all ready 40 pounds underweight. How much longer really will it be before he dies from starvation? Why is it on my shoulders to try to prevent that when he's fighting me every step of the way anyway?

@Kathleen83, that sounds extremely frustrating!

I didn't start to pull back until after my wife was "graduated" from hospice, and only after she was so impatient with me she got her own drink or snack.

Your husband's not wanting to eat sounds a bit self-destructive. My wife's self-destructive tendencies take the form of reliving trauma out loud. She'll spiral down into a bitter monologue about her childhood or people who've wronged her and then talk back to them in front of me. For example, (speaking to her dead mother) "You hated me because you wanted a boy."

I used to just put up with it, until it caused stomach pain or neck spasms. So then I started to avoid her at supper time, or I'd get up to do a chore in another part of the house until she'd "settle down."

But now I remind her, "I'm not your mother. Don't keep tormenting yourself over this."

Speaking of eating, my wife also consistently and repeatedly eats poorly and then complains of stomach pain and bloating. This could be due to ruminating on the trauma while eating, but it's also because of poor food choices. She knows she shouldn't be eating tuna macaroni salad (or at least not eating such large portions), but she does it anyway. I've tried to stop that. I'll say, "You just had a muffin. Why don't you wait an hour before eating the tuna macaroni?" Then I let it go, and she does what she will do.

@Kathleen83, okay, so rather than making your husband a special meal, could you perhaps share some food with him that you prepared for yourself?

My wife has certain fussiness about food. But I've started to give her a few grapes or some slices of pear (both of which are delightful treats) with breakfast. (She won't eat apples -- "they're just for fall.") I pack them for lunch for myself, so I can spare a few. And if she leaves it, I'll eat it. (I hate to throw out good food.)

It's been a chaotic week. Thanks for the response, SquarePegGuy. It prods me to take a few minutes for myself. Sharing my own food doesn't work with him. Plenty of times I've eaten alone, with him sitting across from me, refusing to eat. I'm in agreement that his not eating is in the realm of self destructive. I think he's afraid of dying, but not really wanting to live, either. He doesn't have much faith in what happens after death....doesn't really believe in an afterlife, reincarnation, Heaven, anything like that - but he expresses concern about Hell, and his regrets of how he's treated others, including animals.

It sounds like you've got a whole mess of frustration on your end too. I'm glad you're finding ways to cope, especially since it started affecting you physically. Your posts are making me think that I should also let him be a little more accountable for his words, actions. I know I've been "babying" him quite a bit, and that's not doing either of us any good. Well, he enjoys it, but, I think it's just prolonging things, and making things worse for me.

It seems you're doing everything you can and more. I hope you keep taking time for yourself.
It sounds like he likes the attention.

Hi @Kathleen83, just wondering how things are going.

Also, I visited a hospice patient a few weeks ago -- the husband of someone in our Buddhist group. I didn't know what to expect, but it turned out that he was quite lucid and I was with him for over 90 minutes!

I've learned that hospice sometimes can be used as free nursing home care if the referral is coded properly. Hospice services usually are covered at 100%. This gentleman seemed in better shape than me in some ways. But he is a fall risk. His wife is still working and can't take care of him. It's such a shame that he's stuck there.

Hi SquarePegGuy, thanks for checking. Haven't been here for a minute because....I don't even know how to answer how I'm doing. Just when I thought I was finding my own balance, things went total FUBAR on me. Hubby's physically stable....mentally and emotionally all over the place. As am I, to be honest. Doesn't help that a lot of his talk and behavior now are flash points to a lot of my old issues, especially the PTSD stuff. Also didn't help that his medic alert pendant was taken away, because the company issuing it finally figured out (after I specifically informed them months ago) that he was under hospice care, so they had to disengage. Hospice provided a new pendant....which I told them wouldn't work (cellular network issues in this area) - and sure enough, it stopped working. Replacement not yet obtained.

Like the patient you visited, hubby is lucid and other than the obvious wasting away issue, is in relatively ok shape, but high risk of falls. When he does, he can't even roll himself over, let alone get back up. So without a medic alert pendant, I'm pretty much tied to the home now.

On top of this, an uncle who was previously hale and hearty suddenly declined, and is now entering hospice himself, with very little time left. My family being what it is, is imploding and the fighting has all ready commenced. So, being hundreds of miles away, and hubby, I can't go say my goodbyes to him, but with the battles going on amongst them all there, that isn't totally a bad thing. Just more, stuff, to choke down.

As for hospice facilities, yes. Hubby is in-home hospice, uncle is going to hospice facility. Hubby has option of going into hospice facility for a 5 day period, once or twice a month, for "respite break" for me. He adamantly refuses such things, and I don't want that either, no matter how much I might need it. I am absolutely livid with the hospice group he is with, do not trust them, - but am not changing them, because he likes them. And in the end, I feel it's his decision. As for me getting a break, he insists I can take off any time I want, for as long as I want, and he'll be fine (ha) or will get someone else to come stay with him. Since I don't trust them, turning his care over to them would not give me any emotional respite what so ever, so I don't see the point.

The only person in our lives who feasibly could come stay with him 24/7, for short periods, anyway, is his sister. She in fact DID come stay with him once for a week while I was gone, before he was in hospice. I'm not willing to go through that again. While she was here, was when he went into a sudden decline. No, I don't think she had anything to do with it, it was just circumstantial timing. The problem I have though, is that both of them concealed his decline from me, every time I checked in with them. Flat out lied to me about it. "Didn't want to bother you with it when you were busy and gone". Uhm, not acceptable. Especially since that decline was severe enough that it was what kicked him from palliative care to hospice care. So, I don't trust her anymore, either. Yeah, I know I have trust issues. But when people I DO manage to trust fail me, kinda hard to over come.

Sorry this is rambling all over the place, but I'm running on about 4 hours of sleep. And that was only obtained thanks to OTC sleeping pills. So, yeah. That's how I'm doing.

@kathleen

Hi Kathleen, I am 16PennyNail, or Robert works as well. Hospice is another tragedy I fell into myself, literally now. I was the youngest member of my mum's and dad's family but by a significant margin. I had a wife and a young son that a drunk driver killed when I was still working on my MD. This becomes significant because, in my grief, I returned here. As I was trying to finish school, there were several things that happened to place three members of my mum's family in Hospice care. When this happened, all eyes in the family turned to me. The two people I had to help care for were my mum's husband and stepdad. The other was Mum's oldest half-sister who lives here now; it was her second husband.

They were both physically big men, and I was a muscular ex-ranger. They thought I was not married, I could handle them, and I was attending medical school. They were in a home hospice, and one thing about my family is we beieve/d I added the past tense as I am one of the few remaining. Stepfather was first and had Stage 4 bone cancer that had spread all over him. I was his primary caregiver for right at four months. It is awful to see a person go that way.

The second instance was my uncle Harold, who had Melanoma. It got all over him as well. That lasted over five months; again, I was his primary caregiver; there were nurses who came but for an hour each visit. He was really hard to deal with as he would become combative, as much as he was able, when you tried to give him his meds or tried to get him to eat.

These were awful experiences. I am not sorry I did them. I was able to help and did. That is a hard thing. There may not be much to compete with it. My third experience with Hospice is that I am now in home Hospice care. I have nurses here 24/7. There are three male RNs who rotate on twelve-hour shifts. I call them the Manchurian Candidates, except the main character, could have had a better personality. I may know more than most of what you are dealing with. I am a trained MD, so I know a few things. I am so sorry you have to deal with this. No one should have to. I know you have heard it, but these are critical if you are the one they count on.

- When someone is that ill, it makes everyone around them ill. The stress and just everything else will make you ill.
- You have to take care of yourself. If you break, their support system breaks.

Those are the two biggest things I wish you did not have to do. I wish he were not ill. If you would like to talk, you can message me, and I would be glad to. I have C-PTSD, and my trauma team tells me this is just another layer on that cake. Please take care of yourself and be well. I did not mean to write so much. I swear sometimes, and my autobiography would read like a tragedy. This part of life is just that, a part of life. Wish it did not have to be.