One day husband is up, the next day he's down. After lots of talking by me and the physical therapist, he says, "I guess the only ticket to me getting out of here is doing the physical therapy." YES! We chat about that and it seems his thinking is clear about that. He will say "I can do that." Even when I mention that it will likely take at least two weeks, he says "I can do that." I feel such relief that he finally understands.
Then the next day he calls to say he can't stand it another minute and he needs to get out of that place right now.
This dang COVID thing complicates everything. He hasn't been able to even leave his room since he got there because new patients are quarantined for a bit. He hurts. He's bored. He's lonely. My heart aches for him. And I can do NOTHING to help.
When I visited yesterday morning, he looked and sounded so good and we talked about life in general. He asked about family and friends and our dogs. He misses our dogs so much. One in particular who is always on his lap. He was clear and I even got him to laugh a time or two. We talked about physical therapy again and how important it was that he participate. It was good.
Then last night he called me late. He has been sleeping and when we woke, he was having a hard time figuring out where he was, where I was, just what was going on. He was really freaked out. Oddly enough we had one of the longest, most coherent conversations to date. I'll bet wetalked for over 30 minutes. It was so nice, and was a comfort for both of us. And THEN he tells me that he doesn't know how he managed to get from the bed to the wheelchair on his own, but he did it. WHAT??? My heart is in my throat as I beg him to PLEASE not do that on his own! "Isn't that why I'm doing physical therapy?" he says. Angry because I'm asking him to ask for help, then calming down as I suggest he look for the call button to get an aide to help him back into bed.
The ups and downs are exhausting. My own mood of being worried about him, being angry when he does something like trying to transfer on his own, feeling resentful when HE gets angry and says I'm "lecturing" when I try to explain why he shouldn't, being so, so sad about the entire situation. And the guilt about any of my feelings when I know that he must be feeling all of that and more. I feel so weary. And scared every day.
I try to keep busy...goodness knows there are many things to do around the house and yard. Yet I have little motivation to do anything but worry.
I'm sure y'all know the feelings. It really helps to know that others know how I feel. Thanks for listening.
I've really been on this roller coaster since Jan. 1996, when my husband of a year and a half had a massive stroke at the age of 48. Our lives changed dramatically in an instant. The ups and downs were continuous over the years, and now after developing vascular dementia, my husband is now under Hospice care,(has been for the last 21 months) and on his death bed. Over the last 21 months I was told my husband was dying 4 different times, which of course takes it toll on you, as you try to prepare mentally for what lies ahead. Then he pulls through and the roller coaster continues. Unless you have been there done that, it's hard to describe the mental and sometimes physical toll it takes on you.
So here we are today, and I know my husband won't be here with me much longer. He hasn't eaten in 11 days and only takes a few sips of drink. This roller coaster will be coming to a stop soon, but then I will be getting on another, as I will be trying to figure out what to do with the rest of my life.
So, just know that you are not alone. There are a lot of folks on here that know exactly what you're going through. Make sure that you're taking time for yourself, and don't beat yourself up for being human. Everything you're feeling is only natural under the circumstances, so cut yourself some slack, and just enjoy the time you have with your husband.
This is sometimes characterized as "sundowning". It might be worthwhile to consult with the director of nursing and the doctor at the facility about this.
Frankly, wouldn't try to get him to be cheerful about his situation.
I think saying "yes, honey, I know this is hard for you. I'm sorry that it's happening" might get him to to accept the reality of the situation better.
Maybe try that and see what the results are?
Hang in there! (((((Hugs))))))).
Thank you and be well and stay young at heart... hugs to you
In our case we had some honest talks with therapy staff about progress and potential for progress. Truth was, dad had no more “trying” left in him. He’d try one day and then refuse the next. It just wasn’t there anymore no matter what was tried. Consider talking to therapy staff about this, not saying it’s the same for your husband, but you may get some good info.
Lastly, cut yourself some slack and realize that “happy” is likely over for your husband. He’s dealing with a lot of issues and being happy may be too high a bar anymore. You’re doing your best already, that’s all any of us have to offer
I personally don't like medications - there are necessities, but if there are options, I prefer to not medicate. HOWEVER, when mom had her first UTI in MC, there was no real option! By the time we could get medical intervention, she was put on anti-anxiety, lowest dose, for the duration of the UTI treatment. She was given her dose mid-late afternoon and it was just enough to take the "edge" off, keep her calm, and she would retire at a normal time. She slept through the night.
Hopefully he can proceed with the PT needed and regain some strength so he can go home. Alternatively, is it possible to have him get in-home PT? I've read many posts which talk about rehab and how the patient works with therapist, but doesn't keep up between sessions. This is important! It helps speed up progression and rebuild strength. If you can arrange in-home PT, be sure to work with them and have any necessary equipment (special bed, walker/wheelchair, etc) to help you and work with him when he has sessions, so that you can successfully encourage more repetition of exercises throughout the day. Also consider asking about the anti-anxiety - even if he is home again, he could still have the after-effects from that surgery for a while.
Now back to dad. Have the recreation/activities person visit with him every couple days. See if they have puzzles or word jumbles,... or other activities to help the time pass by if he has to stay in his room. Have the facility social worker meet with him at least weekly. Have a psych evaluation done. The effects of the Corona virus in addition to being in a strange facility away from home have a lot of negative effects on how people think and feel. Your dad might benefit from some short time medication for either anxiety or depression - as the mental health professional deems appropriate. No, once you start them you don't have to stay on them for life. It could be tremendously helpful to him during his stay.
When speaking with dad on the phone be positive and upbeat. Praise him for any and all upbeat statements he makes and redirect him from negative, sad, or angry conversations.
Best of luck to you! Hopefully this will be a time-limited situation.