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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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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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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 think the 8 to 12 hours was a little too much. I am 73 and in my whole life I have never spent that much time in a hospital/rehab with anyone except my MIL and that was forced. We had to travel to the State she was in. She was in Rehab. Her boys thought someone should be there all the time. So we went at 8am in the morning and left at 5pm. TG tablets had been invented by then. We'd get there and she'd be in PT. So we sat. Then we left for lunch and came back. I would never have done this for one of my parents. If MIL had been here, my DH would have gone alone. They do not make it comfortable for visitors staying all day.

I am with you. Its time to take care of you. He is OK. Just tell him the truth, you need some rest after spending so much time in the hospital with him. You need to rejuvenate. 😁

Before I would visit, I would find out his schedule. Mornings are hectic in Rehab because they need to get the person up, dressed and to breakfast. PT is usually done in the morning. Then med passes and lunch. Then he will have OT in the afternoon probably. I probably would not even go visit in the morning. Maybe after lunch and I would leave at dinner especially if you live somewhere where is dark by then.

I am a talker but I am uncomfortable sitting around visiting someone for more than an hour or so. My DH though is almost deaf and he is the only one I sit around for. Even though I have asked that "deafness" be put in his records, it doesn't go from shift to shift. So I need to be there for the doctors.
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KikiBr Jan 2023
I spent so much time with him in the hospital because I could tell he was scared. He had multiple issues. He has been ill for so long and never seems to get a break from yet another problem. The 12 hour day was the surgery that was delayed by 4 hours.

I did call the hospital and they are able to give me the daily schedule. You're right they work them hard until 1:30. He'll probably be tired. When I went there yesterday for a couple of hours it was hard for him to stay awake. It's kind of cute because neither one of us wants to hurt the other's feelings. He wants me to stay but not be an imposition on my life and I want to be there a little but need permission from all of you to do that. My husband is also deaf which makes it also a little hard to continue to make conversation because those hearing aids don't always work very well.

It would be good if I could go there for meals but because of Covid they don't let anyone from outside to go any of the meals. So the only place I can really visit is in his room.
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When my LO was in rehab for a stroke, they worked the patients hard. The patients' schedule was usually 9 a.m. to 3 p.m. doing speech, walking, fine hand movement and other therapy. They didn't encourage family members to sit around there all day. When it was time to learn to help the LO do a task or therapy, they invited me to be present. Some days I was there for quite a while but not always directly with him as I learned how to roll a ball to him (bleah, kindergarten repeat) or brace him as I helped him out of his wheelchair to transfer him to bath or toilet (worse). The staff also provided one-on-one counseling to me on how to lift a 45-lb. wheelchair in and out of the car and how to use a gait belt without dropping him, etc. Also I endured much blathering about how to give up my previous life to be a caregiver and not resent it. Ha! As if! I was continuously assessed as to my ability and willingness to do the job that would ensue when he went home. Unfortunately, I passed.

Patients had a rest/nap period for an hour after the day's therapy. Dinner was afterward, and if I wasn't already there, I arrived every day in time to wheel LO to the dining room and help feed him. I also helped other patients who couldn't cut their food, etc. The aides were stretched very thin at mealtimes.

I noticed that out of maybe 40 patients in that wing, I and one other woman who was also helping her husband were the only ones doing that every day. Some patients didn't see a family member the whole time they were in residence. I was told this by the aides, with whom I became friendly.

Take what you will from this. It's up to each of us how much we are able to give and how much we want the job once they get out. I didn't know at the time that I could refuse. But now YOU do.
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KikiBr Jan 2023
Thank you so much. I remember when my mother was in an Alzheimer's unit for 1 year I would go there every day after work or on the weekend. I would feel guilty as well at how much time I didn't spend there. Then one day two months in the nurse told me that I was the only who came every day and the majority of the people never had anyone there at all. How sad.
I so appreciate your honesty.
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KikiBr, are you significantly younger than your husband? Somehow I get that impression. I have three good college friends who married men 10, 12, and 15 years their senior, when they (my friends) were in their late 20s-early 30s, and their beaux were still strappin’ hunks making excellent money, running marathons, buying sailboats, etc. When reality eventually hit (we are all in our early 60s now), one of them is facing what you are facing, one was widowed suddenly, and the third (her husband just turned 88, and has Parkinson’s and some kind of dementia) is absolutely miserable, as his children from his first marriage are (understandably!) delighted that he has a vibrant “young” nurse, not much older than they are, to deal with good ol’ Dad. I certainly hope you are in a better situation. We just never know what’s coming at us, do we? God, if He exists (and as a Catholic I’m obliged to believe He does) has a mighty warped sense of humor. Nobody is safe, no matter how much prudence and common sense they exercise.

Go take a nap!
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KikiBr Jan 2023
You are very intuitive. He is 14 years older than me. But we got together when I was 50 and yes he has always been very physically fit. And yes I know his "kids" are understandably happy that I'm there to take care of him which is fine with me. But at this age (70's) I could also have been the one who could become ill.
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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!
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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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My father (God rest his soul) was 12 years older than my mom. When she was 72, &had stage III Ovarian cancer (surgery/chemo/infusion therapy) dad didn't leave her side. He was a stubborn Hungarian and wanted to take care of mom himself.
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JoAnn29 Jan 2023
Awwww
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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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I've been in a similar situation with my dad, also since May of last year. The problem is that as an RN I know how overworked the staff are and how often your family member is being left on their own, not out of any lack of desire to help but because the staff are simply too busy to provide one-on-one care to everyone at all times. If you want to make sure your family member is being provided with a certain level of care then you have to be present to be their advocate.
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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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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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What works for you...
What works for him...
My Husband had dementia and I went everyday for his PT and OT. I had ways to get him to do things that the Therapists did not. Once I got him to grasp what was being asked I sat there and shut up. After PT I would have him walk around the facility. (He was there because of a hip fracture/post surgery.)

If your husband is doing well, progressing well and understands that you can not come visit daily then pop in every other day or every 2 days.
Use this time to recharge your batteries.
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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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Given his age, I would urge a daily visit. If you are of a similar age, you could visit several times a week and get a family member or friend to come with you so it is a visit and not you continuing to meet all his needs.
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Only you can answer this question about how often; however I would tell you to trust and honor what you feel is best for you and him; if you explain to him that you are going to come 1 x week or however often YOU decide is best for your health, then be at peace with that. Do not let him, your family or others make you feel guilty about whatever decision you make . If your health is not good, start looking into other options for his long term care while he is in the rehab facility and this will include a conversation with the physician and facility staff about expectations for his care after released, so you can honestly look at what other options for care are available,.
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Well, he is your spouse. If it were my husband they wouldn't be able to keep me away from his side!!! They are caring for him so you can be there to relax and enjoy being with the love of your life for whatever life he has left. Take books to read aloud, cards to play, family photo albums to reminisce, board games, etc. You said he is cognizant. That would be very hurtful to know that your spouse, the person in all the world who loves you most, doesn't want to be with you especially when you're sick. I assume you took vows to honor in SICKNESS AND IN HEALTH? I'm feeling more sorry for your spouse than for you right now.
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BlueEyedGirl94 Jan 2023
Wow Deb, with all due respect, I think that's a little harsh. It sounds like this is the first respite time that Kiki has had in a while. I didn't get the sense that she was suggesting that she completely abandon him while he is there. I think she was just asking what is typical. My husband was in the hospital several years ago and while I tried to be there as much as possible, I couldn't be there 24/7 because I had a job (which I did from the hospital) and teenaged children (who had to go to school) and other responsibilities as well. Sometimes we can't be with our spouses 24/7 even when they are in a hospital or rehab environment.

I'm not sure why you are feeling sorry for her husband. Caregiving is hard. Everyone needs a break sometimes. People don't have to be martyrs and its not wrong of her to feel the way she feels. It doesn't mean that she loves him any less because she needs to take some time to refresh while he is being taken care of by other people. Respite care exists for a reason. There is some alarming % of caregivers that actually DIE before the ones they are caregiving for due to burnout and stress. If she was sick would we begrudge her time to take care of herself? Why is taking care of her mental health any different?

And not to put too fine of a point on it - but I have never once experienced being with someone in the hospital or rehab when I got to sit there and relax and enjoy being there. Overnights in the hospital we were woken up multiple times (while I slept on a hard couch). During the day I was fluffing his pillow or getting him water or asking the nurses for something for him to drink or trying to take care of him. And when visiting my FIL in rehab it has been a constant battle to explain to him all of the things that he wanted us to do for him that we needed him to do for himself, or spend all of the visit explaining why he's not ready to be discharged yet. It's not always a walk in the park to visit someone you love and sit back and relax.

I think her best option is just to go with what works for her. She shouldn't be judged for using this time to heal herself while he heals himself.
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I had a brain aneurysm and I was in the ICU for one week and then I went to rehab for three weeks. I did not remember anything while I was in ICU, and I was very thankful that my daughters came everyday to visit and made decisions for me regarding my treatments, i.e. whether to place a feeding tube, etc. When I was discharged from ICU to rehab, they visited in the evenings every day or every other day as they had day jobs that kept them very busy during the day. Sometimes they came around lunchtime and we went to the cafeteria and had lunch together. Their visits were very welcoming to me.

It can be very stressful when you’re a caregiver, so you can make the decision on how often you want to visit your husband. A suggestion if you can’t visit him everyday is to visit him every other day.

Hope you find a solution on visiting your husband that works for you and will not be overwhelming to you.
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KikiBr: Perhaps there is no 'correct' answer to your question. Visit your DH (Dear Husband) as often as you find within your realm of capabilities (OR as little). Take some measure of comfort in knowing that your DH is being well taken care of in the rehabilitation facility.
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This is a very personal decision.

I feel it is important to take care of yourself. I don’t think your husband would want you to be physically exhausted or emotionally drained if you are feeling overwhelmed.

I hope that you are comforted knowing that your husband is being looked after by a professional staff.

Go see him when you can. Rest when it is needed. You can always call the staff for updates on his condition.

Wishing you and your husband all the best.
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I feel for you.

You don't say how far away you are from the physical therapy hospital. If it is 20 minutes by car and the parking lot is full of cars, that is just added stress.

In an ideal world, I would suggest that you are there either every other day or every day. However, I would time your visit to when the doctor does his rounds or when your husband gets PT and keep the visit short. The visit can be just a little before, during and after the PT and since it is short, it will still leave you some time to be by yourself for R & R.

The reason why you want to be there for PT is because you can watch what they are doing and ask questions about why and how it is being done. The reason why you want to know these things is because chances are, you will have to do it with him once he gets out rehab. In addition, it could benefit you in the future as you may need to strengthen those exact same muscles in your own body.

Depending upon the kind of relationship that you have with him, you could also be his cheerleader, and his sounding board during and after these sessions.

So I would go every day or every other day, and try to time it when you can observe his PT sessions or when the doctor comes for his rounds (much tougher to time correctly). I know that your husband would really appreciate some "different" company, however, by keeping the visit short, you could use this time to re-energize yourself, too.
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I would visit my husband every day, sleep there if they let me😀. We have been married for over 50 yrs, hardly ever been apart, would not be able to sleep knowing he is not home and sick.
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