Help!

Denise1847 · September 22

I DH has been in the hospital 3 weeks due to COVID and pneumonia. He has recovered medically, but the COVID has advanced the Alz and they are keeping him to get his agitation under control. His agitation has greatly improved but now he just wants to go home. It is all I hear when I visit and he is constantly badgering the staff to call me to take him home. The plan is to move him into a sub-acute rehab and then into memory care when a room becomes available in October.

I don't know how to handle this. I feel very badly for him and also guilty. I just can't physically and mentally care for him in his state. Not only am I worried about the current hospital situation but how in the world is he going to adjust going to a rehab and then another change to memory care.

Are there any suggestions? My DH is a very stubborn person and used to getting his way.

M1 · September 23

so sorry Denise. He won’t remember anything you tell him, so unfortunately you just have to say the same things over and over- you’re too sick to go home, the doctors haven’t released you yet. I still use these all the time with my partner when she talks about wanting to leave. He probably has no sense of time.

You could also be a trigger for this. You may have to limit your visits, hard as that is. Ask the staff how he does when you’re not there.

Denise1847 · September 23

https://alzconnected.org/discussion/comment/223575#Comment_223575

Thank you M1. I truly appreciate you sharing your experience and knowledge. I feel so badly for him but know that I have reached my limit, and I am just trying to survive. I am going to take a break from visiting him tomorrow. As if this isn't bad enough, one of his cousins (who hasn't bothered to see him till the hospitalization) asks me why I can't bring him home as he knew who she was and asked about her brother. That threw me into a guilt trip and a need to explain why I cannot bring him home.

SDianeL · September 23

so sorry. I know this is hard. Don’t tell him where he’s going. It’s just another place the doctor wants him to go. Tell this again when they move him again. The doctor wants him to get extra care. If he says he wants to go home, say when the doctor says he can. Make sure the caregivers at memory care reinforce what you told him. Remember you are doing this for him. They will help him adjust. When you visit, do so at meal time and don’t say goodbye or tell him you’re leaving. Just slip out. He won’t remember. He doesn’t understand time. Although he may have been stubborn and want to get his way before, I don’t think he’s being stubborn or wanting to get his way now. People with dementia can’t reason. They usually react to their anxiety. His reasoner is broken. Please keep us posted. Hugs.

M1 · September 23

screw the cousin, don’t listen to these people. They don’t know what they’re talking about. Not worth the effort to even talk to them. They can leave messages that you don’t have to respond to.

midge333 · September 23

Agree with M1! Ignore the cousin (unless she is willing to provide 24 hour care for your DH)!

Denise1847 · September 23

https://alzconnected.org/discussion/comment/223580#Comment_223580

Thank you. I appreciate your feedback tremendously.

Denise1847 · September 23

https://alzconnected.org/discussion/comment/223629#Comment_223629

I was venting to my sister last night about the cousins. She knows our journey. She called the cousin this morning and reamed her out. I would prefer she didn't but needless to say the cousin won't be calling me anymore.

fmb · September 23

Don't back down and don't feel guilty. You are doing what is best for both you and your DH. You can't let this disease claim two victims.

jfkoc · September 23

A hospital is a horrible place for someone with dementia. Additional moves are likely to bring on negative changes.

I would look very hard at the possibility of bringing your husband home if you can bring in enough care for him.

What does his neurologist say?

harshedbuzz · September 23

@Denise1847

I am so sorry for all that's happened in the last weeks.

FWIW, I think the plan to do a subacute rehab with transfer to MC makes the most sense, especially if your DH has maintained the ability to bargain. In your shoes, I would tell him the rehab is doctor's orders without telling him he's moving to MC. You can validate his feelings about wanting to come home and even say you wish he could, but for now he needs to follow doctor's orders. You can frame the MC move as a step-down before coming home. Rinse and repeat.

FWIW, a lot of folks say any move causes a drop in a PWD's ability to function. This wasn't the case with my dad at all. He spent most of the early and middle stages (about 10 years by my reckoning) snowbirding and once diagnosed moved from FL to MD to PA (hospital/rehab/apt) in a 3 month period with no difference in his general abilities or memory.

HB

White Crane · September 23

I'm sorry you're having to go through this. Like M1 said, screw the cousin. You are the one living this journey, not her. You need to take care of yourself. I know the feeling of not being able to take care of your loved one any longer. It wears you down. It's sad and hard but you are doing your best for both of you. Take it a day at a time. Sending hugs.

Denise1847 · September 24

https://alzconnected.org/discussion/comment/223580#Comment_223580

Thank you

Denise1847 · September 24

I know you are right and I really feel if he comes home that I won't be able to thrive. I know it will be better for him in the long run. You know how hard it is. Thank you for listening. It means alot.

Denise1847 · September 24

https://alzconnected.org/discussion/comment/223686#Comment_223686

Thank you. I now have to find another memory care place because the closest one which is nice won't have an opening till 30 days. I have engaged a specialist in locating and advising me. I have 3 places to visit this week. The hospital wants him discharged so I am between a rock and a hard place.

M1 · September 25

Denise, I had to take a not first choice when my partner left the hospital and wasn’t able to move her for a year. Having been through that, I would tell you to have no hesitation to do the best you can for now and then move him if you need to. Yes it’s disruptive but it was by far the best solution for us. My partner remembers nothing of the move now so just do it if you have to and have no qualms about it.

Denise1847 · September 25

https://alzconnected.org/discussion/comment/223779#Comment_223779

Thank you. I always thought that once I didn't have the daily care challenges, things would be better. However, this new chapter is wrought with different obstacles and emotions. You and the other members of the forum truly help to navigate these times. I don't know what I would do without the forum. It validates my feelings and fears and gives solid experiental guidance.

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