My poor husband. Am I messing up?

LaneyG

DH is hospitalized for second time in less than a month. He was doing so well during day. Could carry a conversation with some difficulty, mostly continent, saw to his on ADL with some direction. We kept busy. He suddenly started having episodes of severe agitation in the evenings. I assume sundowning. He shoved me a few times saying he wanted nothing to do with me anymore. At one point he threatened to kill me. Then I’d leave the room and he’d scream at me to not leave. He calms down eventually. This went on a few days. Called his doc who insisted I bring him to ER with concerns for my safety. He sat in ER for 6 days waiting for a bed. He was then hospitalized for 2 weeks. I saw him decline significantly during this time. Doc thought a new med regimen was working. I feared the impact not being home was having. He was discharged. It was awful. Things were so much worse. I could no longer understand what he was telling me. He couldn’t form words or put together his thoughts. Continence issues began. He was agitated most of the time and physically aggressive. I felt conflicted thinking that maybe he needed to adjust. After 2 nights, I was just too fearful and brought him back to ER and we are again going on Day 6 waiting for a bed. They are trying to treat him there as he waits but I haven’t seen any improvements. He has been needing restraints occasionally. Here are my questions. 1. Was I being a wimp? Should I have never brought him in? The hospitalizations seem to do more harm than good. I feel like I caused this. How does one determine when the risk of further decline is worth a hospitalization. 2. I have been caring for him 24x7. I can’t do this any longer. How do I arrange for assistance when I don’t know what he will be like upon discharge. Most places I call won’t do a thing until they assess him after the hospitalization. With staffing shortages they say care probably wouldn’t begin until a few weeks after that. I don’t know if his behavior is progression, med related, or trauma from hospitalization. Maybe after he home a bit he will recover some functioning? Am I at a place where it is time to seriously consider memory care. I’m a mess despite the respite period. Sorry for the rant. Thanks for listening.

Jeanne C.

Oh Laney, I'm sorry you both are going through this. You didn't cause this - dementia did. You're not a wimp - this is a terrible disease that slowly takes our loved ones from us.

Is it possible to have him admitted to a geripsych hospital rather than the regular hospital? Right now you are both safe. However geripsych is better equipped to handle this and get the meds right.

I don't think you should bring him home. And, in my amateur opinion, you should be looking at memory care. I'm sure others who have placed their loved ones in a crisis will have better suggestions about how to move forward, but I would hope the social worker could help.

Denise1847

Oh Laney, I am so sorry this is happening. On the contrary, you are doing all of the right things to ensure both his safety and yours. You are not responsible for his decline. It is just this terrible disease that takes on different forms.

While we all have different tolerance levels for caregiving, I cannot imagine you continuing to do this. I was told that memory care facilities won't accept PWD that have aggression issues so focus on getting his aggression tamped down. You can then make a choice. You know that this disease is only going to progress to an even more difficult caregiving role. Sometimes the disease progresses more rapidly but I haven't heard of PWDs improving, unless the source is a UTI. It would be less traumatic for you and him if he was transferred to a MC after the hospital rather than from home to MC.

Know that your quality of life is just as important as his. One can take on misplaced guilt in our roles. We are all doing the best we can with the most difficult time of our lives. Give yourself grace and applaud your strength.

midge333

@LaneyG:

You did the right thing. He was getting physical with you and you sought appropriate care. He is declining and it is not your fault - it is the disease. I would strongly recommend that you place him in MC after his hospital stay. I would refuse to take him home, citing your safety.

mrahope

I can only add that I, too, felt unsafe with my DH at home. He yelled and threw small objects, then "eloped" one day. And by your account, my spouse was far more functional than yours when I placed him in MC. FWIW, he has behaved much more suitably at the MC than with me at home. It's not serving either of you well to continue at home

M1

I have been in exactly the same place. No, you didn't do this, and no, you can't bring him home. Wishful thinking. I'm so sorry, but he will need memory care after he is stabilized. When I took my partner in, our doctor just flat told me I couldn't continue to care for her at home. That's where you are.

But two and a half years on, I can tell you that life goes on. It will never be the same, but it will go on.

Please keep us posted.

ThisLife

I heartily agree with the suggestion of placement in a Geri psych unit to stabilize and adjust the medications. This is disease progression, not your fault. You are doing the best you can.

Do not allow the hospital to send him home; it is not safe for you or him. Please talk to the social worker about the need to find a MC placement.

My DHs disease progression was slow with last 5 years having distinct drop offs. He went from mid stage 6 and died in 7 weeks though. I was not prepared for that. He ended up in the psych unit with the VA after being in MC for 5 months. He couldn't return to his placement. Since we live in an area with many MCs, the social worker made calls and found 3 facilities that would accept him. I was able to visit them and select one.

This will be tough, but you will make it.

jsps139_

I’m not there yet, but if he pushed you once, let alone more than once, and threatened to kill you, you can’t live with the fear of what may happen. You are not a wimp at all, and you need to make decisions based on the safety of both of you. What if he hurt you and the police had to come to your home? How awful that would be for both of you? Take a deep breath and know you did the very best you could for him while he was home, and you will continue to do the best for him while he is in a facility as his advocate. Thanks for sharing your experience. It is helpful to all of us to think about these things.

Buggytoo

You sound like you have been a true champion for your DH and it is time for others to take the torch. I am so sorry your DH has had to stay in the ER for such prolonged periods of time. This is such a broken system and it is messed up. Not you! I will pray that peaceful solutions find the way to you and your DH.

Dunno

see if Hospice can help.

clarinetist

You’re doing what needs to be done, Laney. This is just one data point, but since June, my DH has had 3 Geri-psych hospitalizations for agitation/aggression. The first two hospitalizations lasted two weeks each and in my opinion, both times he was released back to memory care too soon.

For this third hospitalization, he spent 2 weeks on a medical floor waiting for a Geri-psych bed, and is on his fourth week in the Geri-psych unit.

He is ever so slowly improving. The doctors are trying different antipsychotics, and he must be carefully weaned off one medication and then carefully started on another med. This takes time and careful attention. Unfortunately, for him, there’s been no easy medical solution so far. But your mileage may vary. It’s worth trying, though, for both your sake and his. His aggression is scary for you and probably for him. It’s stressful to feel out of control. Best of luck to you.

terei

Don’t second guess yourself. You should not have to live in fear of what he is going to do next. Try to push for a geri psych admittance + try to relax.

housefinch

Just keep saying you don’t feel safe around him and are afraid. And definitely insist on a Geri psych unit, not just a medical ward admission with someone talking to a psychiatrist for advice by phone. Be the squeaky wheel even if it feels hard. Just pick your script and keep repeating it. Sending you big hugs 🥰

H1235

You are doing the right thing! If you are considering MC you should keep in mind there can be a waiting list. Even if you’re not ready yet, now is your chance to check out a few places while he is in the hospital and you’re not tied down as full time caregiver. If you are uncomfortable bringing him home and there is no MC available I would recommend you refuse to take him. Sorry you have to go through this.

LaneyG

Thanks all. They put him in an icu room until they find a Geri psych bed. Get this…they found some beds, one in my first choice hospital, but they are all declining him because of his Type 1 diabetes that these units don’t feel equipped to deal with. I guess with the bed shortage they can be picky. So the psychiatrist in the hospital where he is at, is still trying to help him trying some new med combinations. Thing is the psych unit in this hospital doesn’t take on/work with dementia. Dont know if this a mistake. I guess at least something is being done to try to help him as we wait. I don’t know what to think. They still don’t have a good handle on the agitation and combativeness which is focused on his wanting to go home. They’ve been having to put hand restraints on him which breaks my heart. Sometime he talks clearly, sometimes not. Sometimes he seem very sedated. He is on waiting lists for MC facilities. Not sure they would accept him as he is right now anyway. May try home care. Hospital is warning me he may need a LTC facility which is way more expensive than even MC. I dunno what is going to happen. One day at a time I guess.

midge333

Type I diabetes complicates everything. My DW has had type I diabetes for 60 years and now has vascular dementia. Her endocrinologist has not had good experiences with his type I diabetes patients in long term care facilities. Some memory care facilities refuse patients with type I diabetes. I have found two local memory care facilities that will take my DW but I remain skeptical that they can provide reasonable care.

LaneyG

Midge, you are so right….Burns me up. It’s just not right. A form of discrimination as far as I’m concerned. MA won’t treat diabetes in MC. I have him on waiting lists in NH. I worry how that will go. They put him in a med surge floor til they find a bed so they can more easily manage his BG. They ar doing an awful job of it as well.