Need some input

FredW

I have a situation that I need input on.

I’m in the hospital recovering from cancer surgery on my liver and my wife’s daughter came to take my role until I can get home.

I’ve been struggling with the decision to get out of here as soon as possible or wait until I’m fully recovered. All the advice I’ve got says stay here as long as I can. However, the situation with my wife is deteriorated the point where she’s seriously impacted by the inability of her daughter to care for her like I do.

Her daughter thought all she had to was walk in the house, fix a few meals and that was it. I tried to warn her that caregiving is a little bit more than that, but as we all know, you don’t know what it’s like until you walk in those shoes.

The last four days of monitoring the situation remotely with security cameras and getting updates with text messages. My wife is deteriorated significantly.

We knew she was gonna be impacted by my abscess, but her daughter’s inability to put priority on taking care of her instead of her own issues is added to the complications.

We had a situation where she had to be taken to emergency room yesterday. It worked out to be nothing serious, but it wasn’t a good experience for my wife.

Her daughter has not been sensitized to the need for a consistent routine and other mistakes that new caregivers do.
Her first evening with her alone caused the sundowning effect that we haven’t seen in months.

If I didn’t have security cameras, I probably wouldn’t know what’s going on but since I do know, I see that she’s not getting the quality of care that I would give her.

Her daughter who I told about the cameras is not comfortable with me watching what’s going on, but my position is based off of my reading of that great post by one of the members the Calvary is not coming and then I’m in charged. I told her basically that the cameras are going to stay on.

So tell me, am I overreacting just because I know more than I would have if the cameras weren’t there and continue to stay here until I get really healthy to go home or should I get out of here as soon as possible and manage the impact of my absence?

By the way, her daughter was my Plan B. I got a feeling that is going to change when I get home. As we all know this is a very lonely job and the Calvary is not coming.

Thanks for your input.

I hate this effing disease.

Carl46

I think you should stay where you are until you are healthy to go home. If you go home now, you are both apt to wind up in a nursing home

Carl46

Sorry to be so terse above. My computer was acting up.

You are ill and really, really need a break to recover. If you would worry less with the cameras off, I would turn them off. You need to take care of you so you can take care of her when you are fully able to go home. Her daughter is an adult, let her handle it for a while.

Best wishes for your speedy recovery.

harshedbuzz

I vote that you stay put and fully recover for a lot of reasons.

Your wife was always going to struggle without you acting as her Sherpa scaffolding her every moment.

If you return home at much less than 100%, she might be upset by you not being your usual self. Combined with the lack of empathy found in dementia, she likely won’t let you operate at less than 100%. This is especially true if she has decompensated during your absence.

It’s hard to say whether your DW’s daughter is up to caregiving as your Plan B. Unless you have witnessed abuse or obvious neglect, I’d be inclined to allow her to grow into the role of caregiver. This is something folks learn on the fly. I’m awesome now, lol, but I sucked when I initially started. Given the mother-daughter dynamic, it was hard for me to accept that mom needs the level of assistance she does.

HB

trottingalong

Stay where you are and get yourself back to where you need to be. By going home prematurely and attempting to “fix” your wife’s backward slide, it will drain you and make you far less healthy. You could very well be putting your own life at risk with this worry and possible premature drive to get back home. Then where would your wife be. Turn the cameras off, let her adult daughter figure it out and allow yourself time to heal. Without the daily consumption of watching what’s happening at home (which you cannot control) you may find you get better quicker.

jfkoc

Stay where you are. I would also get some outside help to come in when you do go home.

Your wife is not going to react well to any change and no one is going to get the quality of care you give.

Sometimes none of the choices is great…

Quilting brings calm

If you are still in the hospital several days after surgery …. Then you are not well enough to go home. Let alone be a caregiver. Hospitals shove you out the door as soon as possible these days.

Your wife was always going to deteriorate with you gone because you’ve been her person. Her daughter cannot be your long term plan B because she has a life a few hours away from you. Please do what we suggested and get a continuing care facility to take care of both of you. Chemo is no joke.

Iris L.

Hire home health assistance for when you do return home, if you are allowed to return home. You might have to go to a rehab hospital if your own recovery is slower than anticipated.

Iris

ronda b

Turn off the cameras. They are causing a increase in anxiety in you wich will slow the healing process. That in return will slow you going home. Let your daughter handle it. No one like was said in earlier post is going to do it like you.

Timmyd

In an ideal world, we don't just have a plan B (backup) we get to test the plan B to see how well it works. None of us get to live in an ideal world. Like you, my wife's daughter is plan B and I have real concerns of how things would unfold if I were to need plan B.

It is obvious from your post how committed you are to your wife. Like others have said, take care of yourself as that is more in your control. The other stuff is mostly beyond your control. Give yourself credit for having done so well thus far on this journey. She is very lucky to have you.

RetiredTeacher

I also vote to stay in the hospital and work on your recovery. It would be a negative impact on your wife with a y change of caregiver or circumstance. As long as she is safe, supervised, fed, changed and has someone with her, you need to focus on you getting well. If the cameras cause you to worry, turn them off. You need to take care of yourself FIRST right now.

BPS

I think you said you were going to be doing chemo after you get out of the hospital. If that is the case I think you should see if there is an assisted living facility available for you both to move to together or a full time care assistant at home for at least a couple of months to see how you react to the chemo. My dad had chemo and it didn't make him sick but it did make him tired and week. You have to be healthy to be able to take care of your wife.

Chammer

What @Quilting brings calm said... your healthcare team will only keep you in the hospital as long as you need that level of care. You don't want to stay any longer than you need to though because hospitals aren't healthy places to be! And even if the calvary isn't coming you can take charge by getting additional help in your home as you make plans for you and your wife's future. DD can assist the assistant and with guidance and direction from you, they can be the temporary scaffolding you and your wife need. (I know... easier said than done) and if you can, take at least a 24 hours camera break.

Bridge4

I agree with the other comments here that your first priority must be to take care of YOU. You obviously care very much for your wife and she is fortunate to have you. The best thing for her, though she may not know it, is also to make sure that you care for you. This is also a great opportunity to test and develop your Plan B. Your wife will not remember the short-term discomfort due to her daughter’s learning curve, but her daughter will remember, will improve her skills, and will appreciate you more than ever through this experience. Turn off the cameras or cut back use to just dinner time, bath time or some other brief window once a day so you can focus on rest and recovery from your own body’s trauma.

Karen711

Hi Fred,
I’m sorry you’re in this position and i wish you well in your recovery! I think you’ve gotten excellent advice from everyone so far. As hard as it may be to chose your own self care over your dear wife’s, it actually is the most loving and I think responsible thing you can do! Maybe think of this as spring training as though you were in the military. You DO need time to heal and then rebuild your strength in order to go back and fight the next battle. If you go back to soon you may fail and then where will you both be? And I highly agree that when you do go back you seriously should have full time help there at first, as you build up further, giving yourself time to build back into caregiving shape.
The hospital has a social worker that should be able to help you put someone in place, and you can request to speak to them sooner rather than later Also, they may be able to help you send help over to help you DWs daughter now as well, which might give you some piece of mind. Who knows, maybe having an extra person there, a caregiver who is well versed in dementia, could help to bring some calm stability into the house. You’ll know best on that one. Anyway, I’m with the rest of the community on this- please take care of yourself so you can be strong for the long haul. I wish you well, and please keep us posted!

Hugs to you!

Karen

Biggles

I agree with the above you need to look after yourself so that you can look after your DO. Please don’t be too hard or expect too much from her daughter children don’t have the experience of life to understand the needs of a alts/dementia person. Our story goes that when my DH was diagnosed our daughter was beside herself asking how was she going to cope driving 800kl round trip each weekend to look after us (very dramatic but also very caring) so we sold up and moved. Very unsettling especially for my DH. It’s been 2 1/2 years now, I have a phone call each day which is lovely but no assistance from our daughter or son-in-law who live 10mins away, they are too busy with jobs, children etc. They mean well but have no idea about the 24/7 work it takes. Our move seems to have taken the pressure of parent sitting off our daughter, created a lot of extra stress for us but on the good side we are now finding a new and interesting life. One door closes and with a bit of persistence another door just might open in some form or another.