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I have been a caregiver for my husband since May of 2022. He suffered several small strokes (with no lasting damage) and had carotid artery surgery a few days ago. Because he was on medication for 7 months that caused muscle weakness and because of his age (85), he is currently in a physical therapy hospital to regain his balance and strength. He was very strong and physically active before May. Fortunately, he does not suffer from any cognitive issues. I am experiencing burnout after these months of caregiving and am "enjoying" him being in a facility where I know he will get better and is taken care of 24/7.

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You do NOT need 'permission' from an internet forum of strangers to take a break from seeing your husband in rehab! Do what YOU want to do and visit him as often as you need to so you won't feel wracked with guilt. That's the bottom line. Nobody can tell what that means, either.........that you 'should' go daily, 3x a week, once a week, or whatever, b/c nobody knows what makes you feel guilty for NOT doing.

What I DO know is that YOU need some relaxation time of your own and you don't need permission from anyone to take it. If you break down, then what happens? Then your DH stays in that rehab SNF in their long term care section, permanently.

Wishing you the best of luck coming up with a plan that works for YOU!
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KikiBr Jan 2023
Thanks. I don't have any friends who have gone through is and I'm so happy I did go online to this forum because everyone has been so helpful and each has their story. It's been very comforting and I so appreciate the feedback. I went there to see my husband and we had that talk. And we agreed on what would make us both happy and it truly does. Thanks to all.
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What do you mean, “should”? For your own selfish peace of mind (always priority numero uno for me😂!) you “should” pop in for a quick hello just before that nagging feeling of guilt begins to creep in to disrupt your serene enjoyment of your respite from burdensome care. You “should” swing by for a cheerful, brief visit juuuuuuust before your husband begins to suspect that you are lovin’ his being someone else’s problem for a spell! If he gets surly, or gets his feelings hurt, then there will be a tiresome and awkward conversation about why you are staying away. But I certainly understand your relief! There’s not a thing wrong with my husband, healthwise, but since he retired and is HERE all the time, I hum “zip-a-dee-doooo-dah!” happily, when he runs errands or goes to the gym, and leaves me blissfully ALONE in the big, silent house for an hour or two. You do YOU, honey!
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KikiBr Jan 2023
You're great Emma and I appreciate your advice and your humor. You have officially given me permission to relax a little. He will be back sometime in the near future and I will be doing all that is needed. Fortunately, with this rehab they are doing he will be able to do a lot more for himself, and perhaps we can go out and have fun again as we did before May hit.
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My husband before he died was in and out of the hospital many times, I visited him once a day for an hour or so. If I had a lot going on in a day, I would call him and possibly skip that day.

He was too sick to care or was always being tested for one thing or another, otherwise watching TV.

I am not one to stay with someone all day and night in the hospital, doing nothing but sitting there or watching TV, see no reason to do so, may just be me.
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Fawnby Jan 2023
I agree. I've done the 8- and 12-hour stints in the hospital, and I won't be doing it anymore. I believe it helps the care staff more than the patient, who usually lies there dozing and watching TV. If they're really sick, they'll be in ICU. I used to live in a small town where the whole family would flock to the hospital and gather around the bed, snacking and laughing and keeping the patient company. That was the culture there. It wasn't pleasant for other patients sharing the room or down the hall. No rest for anyone!
(5)
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The next time my husband is in the hospital I am putting a sign over his bed saying "DEAF". He can only hear if you are on his right side. Other ear he is deaf in. His good ear is only 20% or 30%. He has to keep his hearing aid in his ear all night because they wake him up to check his blood pressure and talk to him. He is not so much scared just hates hospitals. He is usually there because he gets AFib every few years. Last time they were going to shock him, gave him a sedative and he went back to normal. I really think it was because he hated being there. He had trama as a child in a hospital. I can totally understand why u stayed.

Now you know you have your mornings and maybe early afternoon. So sleep in and enjoy your peace.
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NEVER assume care is excellent. Families need to be very involved. My moms in a rehab right now for double pneumonia and weakness..I have to visit early am for about 3 -4hrs daily. After lunch she sleeps the rest of the day..I get my time off then. These days facilities use quite a bit of “agency” nursing staff. They have very few actual staff employees... This means nursing staff changes daily. Care plans are not available to new staff until about day 5. As a retired Geriatric Clinical Nutrition staff member of a 600 bed facility with 27 yrs experience ….I find general care fair at best…mom was allowed to go 7 days without a bm. Bowel obstructions are a huge reason for elderly hospitalization and can cause death…. I asked 4x for intervention. The PT/OT therapies are great. These staff members are dedicated, hardworking and caring. Mom has Lewy Body dementia. She has slept in her clothes all but 1 night this past week. Street clothes are requested by OT department. I see mom, even at her lovely assisted living facility, a good 15-20 hrs a week. All our AL, Assisted living, LTC and rehab are on site in our community. Burned? Yup….4 years of this feels like a long time but as her daughter I will not allow sub standard care. I get mental health counseling 2x a month to keep me relaxed. She is 89 and I am 72. Good Luck.
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When I was in a Rehab facility myself for one month, I had two visits from a family member and two visits from friends. That was all, and I survived just fine. Does your husband expect your constant attention and visits or would he glad for you to be able to have this break in your care taking duties. If he can appreciate your need for some down time, a couple of visits a week might be a good fit.
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Don’t feel obligated to visit. Since you’re feeling burned out, take care of yourself while he’s being cared for. Perhaps, calling him would be helpful for both of you. He won’t feel abandoned and you can take this time to destress. Caregiving is hard and emotionally draining. Not visiting doesn’t mean you’re a bad person. The adage take care of yourself first before you can take care of others is true.
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I wasn't sure if you were chewing me out for asking this question. Then I realize that you are supporting me, right? I think my feelings of hopelessness are making me too sensitive. He loves me to be around and that's nice but after spending 6 days sitting in a hospital for 8 to 12 hours before and after his surgery this past week, I welcome being home with my little dog (who is also very needy right now).
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Geaton777 Jan 2023
Yes, Emma1817 was being supportive! If he has no cognitive problems, you can just do phone call check-ins with him. If you hear anything concerning then I'd go there to do in-person reconnaissance. Otherwise, don't feel guilty about enjoying your You time!
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Were it me, and I were burned out, but still had a loving relationship with my hubby I guess I would be real honest as to the level of my burnout, would say "Hey, you are going to now be busy getting stronger, and I need rest and time to just veg and regather myself. I am thinking I will visit about three days a week. You might ask him also, if this place is nearby to you (this is KEY) what he thinks. Would he rather have you there for an hour 5 times a week for for two or three hours three times a week. My memories of my bro being in was that he was often busy, and if I was there long I was sitting bored while he was off to PT or OT. So I guess ultimately you are just down to playing it by ear, seeing how this works. You might also consider asking for a "week or five days " off.
Much here depends upon the relationship you two have nurtured throughout a long time. I sure wish you good luck.
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KikiBr Jan 2023
You're right. I am usually a pretty outspoken person but I feel this is such a delicate area. I don't want to hurt his feelings but I do need to be honest and explain that is something I need to do for myself. In October his two sons came for a visit (all his kids live quite a distance away) and I actually got 36 hours to go to a local motel and just eat, read and drink. It was wonderful but it wasn't long enough. Thanks again.
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I don't know if it is because it is a Father/Adult child relationship vs a husband/wife relationship or if it is because of the nature of our relationship with my FIL in general (way too much detail to go into, many here may know the story, but long story short - my FIL is an extreme narcissist and has been for a long time and my SIL/BIL are his live in caregivers, he is mentally competent, but physically nearly immobile and weighs about 300lbs(and has for the 30+years I have known him), caregiving for him has become a nightmare on nearly every level)

My FIL is being discharged from inpatient rehab next week. He has been there since right after Thanksgiving. He was in the hospital for a little over a week prior to that and was transferred from the hospital because he would not get out of the bed. Not could not, would not. He was an unsafe discharge home (and many thanks to this forum for that particular phrase) At first, we thought for sure that he would not come back home. We were looking for Skilled Nursing Facilities. He was alert and talking and engaged, but unwilling to get out of the bed. (there was nothing physically wrong with him, he took a small roll out of his chair but was not injured and had multiple tests in the hospital to ensure that) He had a UTI that was treated in the hospital but at this point he was completely clear headed.

BIL/SIL visited at most twice a week for long enough to say hello and switch out his clothes, maybe a few minutes longer. DH and I live about an hour away, and we visited once a week usually. We all spoke periodically on the phone but it amounted to someone speaking to him at least once every day.

This time was a much needed respite for the entire family, as DH and I are back up/additional "sharegivers" and emotional/mental support and the "cavalry" so to speak whenever any interventions need to happen with FIL. It has not been without fireworks even with him being in rehab. Had we gone every day - I know he would not have made the progress he has made. We literally saw him regress when we visited.

When we visited - he would ask SIL to brush his teeth or DH to push the call button that was literally at his finger tips. He would ask me to hand him his phone that was laying on his stomach. He would ask BIL to hold his water cup for him. He would ask us to raise the head of his bed when the controller was laying next to him. He would literally not do a single thing for himself. He wanted us to feed him. He wanted us to brush his hair. The list goes on and on. We would not do it for him because we knew he could do it himself. But we asked him who did it for him when we were not there. He said he had to do it himself because "They don't come fast enough when I call and they say I need to do things for myself."

I don't know - maybe that sounds selfish of us to someone outside of the family. But had we stayed and been there every day or every other day and done those things for him - he would not be coming home next week. He would 100% be going into a Skilled Nursing Home from rehab instead and there is a good chance he wouldn't have made any progress at all because as he once told a doctor "Why would I do it when they can do it for me?" And that statement right there is the exact reason he has lost so much of his mobility and independence to begin with.
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