Staying at hospital with parent 24/7

[Anonymous]

Anonymous wrote:

Anonymous wrote:When my mother was in the hospital afraid, demented, over medicated and unable to speak, me and my two siblings slit up shifts and stay on a cot in her room 24/7. We were not going to let her be in there alone. I think it was a week, and then we moved her to a nursing home.

P.S. I had a very young child and my husband took care of child while we did this.

I was just in the hospital for 2 days and pray I do not ever have to go to the ER or be admitted without a strong advocate. It could happen as I just separated from my husband and our son is 16.

That's great that you were able to do this, but it was for a week. For many, their elderly relatives could benefit from this level of intensive care for months and years. That's unsustainable if you want to also be raising your children and tending adequately to your own health.

[Anonymous]

We did 24/7 for 7-10 days when our father was in ICU. But in rehab-nope. But then again he was an MD and was very mentally there in rehab. He sometimes just needed to rest.

[Anonymous]

Anonymous wrote:We did 24/7 for 7-10 days when our father was in ICU. But in rehab-nope. But then again he was an MD and was very mentally there in rehab. He sometimes just needed to rest.

This is one thing we were told. Even when a little disoriented they need rest, and when you are there they feel they need to be "on." It's a trade off because you aren't there to advocate, but if you don't get rest and the person doesn't get rest it's not good.

[Anonymous]

We did this for mom although she was only in the hospital about four days. My adult kids also did it for me when I was in the hospital for five days. That's what we do in our family. Can't trust hospitals no matter how good they are.

[Anonymous]

Anonymous wrote:You can’t trust the care in any facility. Unfortunately you not only need someone there all day and part of the night, you also need that someone to know what meds the patient should be on and the timing of pain management, when the shift changes happen, etc. Especially in rehab, the squeaky wheel gets the grease and patients who have advocates get their doses on time, are helped with the bathroom, etc. It’s horrible but true. It’s most critical to be there and be on your game during transfers. They are often the most dangerous point because of the physical issues and also because a new person looks in the computer and can give the patient all the meds they were ever prescribed. Also, always always ask if you can pay for a private room. They often won’t mention it because people balk at the expense but it will be the best $ you ever spend.

In this situation we also liked to be there when the doctors visited to understand and ask questions. The level of care is just going to be better with someone there advocating and paying attention to meds, food, symptoms, etc. That being said it is difficult to support and you’ll need to figure out what works for your families

[Anonymous]

Op here. I just wanted to say thank you to everyone for your replies. According to my husband, SIL is aware that the 24/7 monitoring can't go on forever so she's making plans (not sure what they are).

We'll get through the holidays on the home front, but now I'm just worried about ongoing care--he may need to be moved to a nursing home which he will hate.

Interesting point about needing rest-just the other day, rehab told dh/SIL for the first time that visits from family and friends need to be kept short. They're allowing them to stay 24/7 for now though.

[Anonymous]

OP- if this continues into long term one other thing to consider is hiring full time / or as much as you can afford care. We had them stay at hospital and re-hab centers for my mom - meaning they reported for duty first while she was still home then when she was in hospital or first time rehab at those facilities. Once they’d been with us long enough and we felt secure with the level of care we skipped discharge from hospital to rehab and just had her go home. Rehab places are largely awful facilities. It was better for mom - and family - to continue care at home. Note - we (family) still spent lots of time with my mom at hospital but her aids were there as the constant. We’d send them to meals or just to break rooms when we visiting but them being there allowed us to still work and care/visit without long term stress or loss of income, etc.
System worked so well that by time my Dad needed - the aides were highly skilled home care and I credit them with minimizing hospital crises - and a much better quality of life.

[Anonymous]

Anonymous wrote:

Anonymous wrote:We did 24/7 for 7-10 days when our father was in ICU. But in rehab-nope. But then again he was an MD and was very mentally there in rehab. He sometimes just needed to rest.

This is one thing we were told. Even when a little disoriented they need rest, and when you are there they feel they need to be "on." It's a trade off because you aren't there to advocate, but if you don't get rest and the person doesn't get rest it's not good.

The “being” on part varies — possibly wildly. When I was with my Mom in hospitals, she actually felt more relaxed so that she could sleep and rest. I agree that it’s good to be sensitive to the impact that your presence might have. I often sat out of direct view, reading a book, so my presence was felt, but I avoided cues that pulled for social interaction— unless my Mom clearly wanted that. The presence of private duty caregivers seemed similar. The presence of other people who came to “visit” was often exhaustingly stressful for my Mom, though, because she felt like she had to be “on” and responsive with her “guests”.

OP, as you can see, there are no perfect options. Most of us in these situations do our best with the resources that we have to work with at the time.

[Anonymous]

Anonymous wrote:Please be nice. I'm asking because I don't know the answer.

83 year old FIL (widower) was in the hospital for almost 2 weeks, and now is in an inpatient rehab. He had a fall, and some brain swelling. It's my understanding that he needs physical and cognitive rehab, and is expected to recover (he was mostly healthy and strong before the fall).

My husband's sister is a fantastic care coordinator. She is a RN, and has really taken over this overwhelming situation and we are very grateful. Since day 1, she's wanted someone in the hospital room with him 24 hours per day (minus brief runs to the cafeteria or hospital coffee shop). Fortunately both she and dh have been able to take lots of intermittent time off work. There are 2 other family members who can help some here and there. DH and I are the only ones with a child at home. And I also work full time and don't have much leave.

SIL wants to continue the schedule of having someone there 24/7.

My question is, is it typical to have a family member in the hospital room at all times? FIL has some confusion and short term memory problems. Physically he needs help getting up. SIL arranged for him to be in trusted top notch facilities. On top of this, we've had some general "life is hard" situations - flu, hosting Thanksgiving, out of town guests arriving, school closed all week, and a dying pet to boot. Frankly, it would be nice to have my husband available this week.

When your loved ones have been hospitalized for more than a few days, have you been there 24/7? Is this what you're supposed to do? Would it seem totally neglectful for us to say "hey, we'll come visit for a few hours but dh can't take an overnight/18+ hour shift this week, but we trust Dad will be in good hands with the rehab team."

We did this 24/7 coverage for weeks for our elderly mom. It was a tag team approach so that she was never alone in the rehab. It was great for her. It was awful for everyone else. Most of us were so stressed out from the driving, barely sleeping on a cot in her room, going to work, cooking, childcare, then siblings started to miss shifts and WWIII exploded. Everyone was angry, fighting and stressed. It did some long term damage to relationships and I would never do it again and don't recommend it.

[Anonymous]

For those that were able to do it, how many people were involved? I guess I could see it if the patient had 12 kids, and each kid is married, and at least some of them have adult children...so you have a rotation of 30-40 people. But I really don't see how it's possible with most families that only have a few kids, and those kids have young children, etc.

[Anonymous]

She has probably seen some **** as a nurse. Ask her about it. I wouldn't have a loved on alone unless there was no other options either.

[Anonymous]

Please don’t take this wrong, but it isn’t your decision. You’re not the adult child here. Your husband is.

When my mother was in the hospital I wanted to be with her a lot. It put a burden on my husband, but he understood how I felt.

Let your husband and his sibling(s) work it out.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Please be nice. I'm asking because I don't know the answer.

83 year old FIL (widower) was in the hospital for almost 2 weeks, and now is in an inpatient rehab. He had a fall, and some brain swelling. It's my understanding that he needs physical and cognitive rehab, and is expected to recover (he was mostly healthy and strong before the fall).

My husband's sister is a fantastic care coordinator. She is a RN, and has really taken over this overwhelming situation and we are very grateful. Since day 1, she's wanted someone in the hospital room with him 24 hours per day (minus brief runs to the cafeteria or hospital coffee shop). Fortunately both she and dh have been able to take lots of intermittent time off work. There are 2 other family members who can help some here and there. DH and I are the only ones with a child at home. And I also work full time and don't have much leave.

SIL wants to continue the schedule of having someone there 24/7.

My question is, is it typical to have a family member in the hospital room at all times? FIL has some confusion and short term memory problems. Physically he needs help getting up. SIL arranged for him to be in trusted top notch facilities. On top of this, we've had some general "life is hard" situations - flu, hosting Thanksgiving, out of town guests arriving, school closed all week, and a dying pet to boot. Frankly, it would be nice to have my husband available this week.

When your loved ones have been hospitalized for more than a few days, have you been there 24/7? Is this what you're supposed to do? Would it seem totally neglectful for us to say "hey, we'll come visit for a few hours but dh can't take an overnight/18+ hour shift this week, but we trust Dad will be in good hands with the rehab team."

We did this 24/7 coverage for weeks for our elderly mom. It was a tag team approach so that she was never alone in the rehab. It was great for her. It was awful for everyone else. Most of us were so stressed out from the driving, barely sleeping on a cot in her room, going to work, cooking, childcare, then siblings started to miss shifts and WWIII exploded. Everyone was angry, fighting and stressed. It did some long term damage to relationships and I would never do it again and don't recommend it.[/quote]


Thank you for bringing this up. This is so, so important. We had many years of decline with dad with many emergencies. It destroyed our family relationships. For the first few years people appreciated eachother more, we were glad to help yada yada. There was a lot of hidden dysfunction that could be stifled with everyone getting sleep and able to tend to their own families and work. Slowly, but surely things fell apart. The damage is not reparable. I am not going into details, but it's not just about that week or another week. People can linger in terrible shape through their 90s with many hospital stays. Find a sustainable solution before the next issue happens.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Please be nice. I'm asking because I don't know the answer.

83 year old FIL (widower) was in the hospital for almost 2 weeks, and now is in an inpatient rehab. He had a fall, and some brain swelling. It's my understanding that he needs physical and cognitive rehab, and is expected to recover (he was mostly healthy and strong before the fall).

My husband's sister is a fantastic care coordinator. She is a RN, and has really taken over this overwhelming situation and we are very grateful. Since day 1, she's wanted someone in the hospital room with him 24 hours per day (minus brief runs to the cafeteria or hospital coffee shop). Fortunately both she and dh have been able to take lots of intermittent time off work. There are 2 other family members who can help some here and there. DH and I are the only ones with a child at home. And I also work full time and don't have much leave.

SIL wants to continue the schedule of having someone there 24/7.

My question is, is it typical to have a family member in the hospital room at all times? FIL has some confusion and short term memory problems. Physically he needs help getting up. SIL arranged for him to be in trusted top notch facilities. On top of this, we've had some general "life is hard" situations - flu, hosting Thanksgiving, out of town guests arriving, school closed all week, and a dying pet to boot. Frankly, it would be nice to have my husband available this week.

When your loved ones have been hospitalized for more than a few days, have you been there 24/7? Is this what you're supposed to do? Would it seem totally neglectful for us to say "hey, we'll come visit for a few hours but dh can't take an overnight/18+ hour shift this week, but we trust Dad will be in good hands with the rehab team."

We did this 24/7 coverage for weeks for our elderly mom. It was a tag team approach so that she was never alone in the rehab. It was great for her. It was awful for everyone else. Most of us were so stressed out from the driving, barely sleeping on a cot in her room, going to work, cooking, childcare, then siblings started to miss shifts and WWIII exploded. Everyone was angry, fighting and stressed. It did some long term damage to relationships and I would never do it again and don't recommend it.[/quote]


Thank you for bringing this up. This is so, so important. We had many years of decline with dad with many emergencies. It destroyed our family relationships. For the first few years people appreciated eachother more, we were glad to help yada yada. There was a lot of hidden dysfunction that could be stifled with everyone getting sleep and able to tend to their own families and work. Slowly, but surely things fell apart. The damage is not reparable. I am not going into details, but it's not just about that week or another week. People can linger in terrible shape through their 90s with many hospital stays. Find a sustainable solution before the next issue happens.

+1. 25 years later the rifts in our family are still there, and the kids who were 10-16 during this time all have their own issues because parents were constantly caregiving for elderly people in the hospital instead of caregiving at home for their children. It isn’t fair that our hospitals and social welfare systems are so poor that sandwich generation parents have to choose their kids or their parents, but prioritizing elderly parents’ care has long-lasting effects. Yes, I have relatives who lived to 98 instead of 92. But I didn’t have a parent home on weekends (lower staffing! Someone must be there!) for years. Now my mother is aging and can’t believe that I won’t be leaving my 5 yo and rushing to the hospital with an overnight bag the second she’s admitted.

[Anonymous]

Anonymous wrote:For those that were able to do it, how many people were involved? I guess I could see it if the patient had 12 kids, and each kid is married, and at least some of them have adult children...so you have a rotation of 30-40 people. But I really don't see how it's possible with most families that only have a few kids, and those kids have young children, etc.

When my mom was in the hospital, it was my dad, my (adult) brother and me at age 21. When my dad was in the hospital it was just my mom and me at age 27. Medical emergencies ARE inconvenient and yes, I used up all my vacation time taking a shift in the hospital each day for the two weeks my mom was in the hospital. I didn't mind, and never brought it up. Yes, it was outrageously inconvenient, and yes everyone (including spouses and children at home) had to sacrifice. But this is what we do in our family.