Question about what others do re: elder care

[Ginevra]

This is about my MIL, who is now in a rehabilitation facility after her fall and injury of last Monday. My disclaimer: I love my MIL and am perfectly content to do it this way. It isn’t causing any hardship for me or my family. My main question centers around thinking it is very atypical. So, here’s the situation:

There are eleven people available to participate in this. One SIL made a Sign Up Genius while MIL was still in the hospital, to have one of us in the room 24/7. There are three “shifts” per 24 hour period: a morning, an afternoon/evening and an overnight. (Personally I thought four shifts made more sense, but whatever.)

While in the hospital, I did think this was best. She was highly confused, could not get out of bed on her own, wouldn’t have been able to communicate questions about her care or medications, etc. Now, though, in my personal opinion which I have NO intention of trying to persuade anyone about, we could begin cutting down the constant vigilance now. MIL is enormously improved and has been much more clear about her own care and what is going on. She understands the nurse call button, for example. She is walking with PT help. She has taken a shower and dressed in regular clothing for two days (with assistance).

The biggest potential problem is she will think, “need to go potty” and will not call a nurse. She will think she can just get up and walk to the bathroom. This seems to be the main reason the majority of people think we should keep the 24/7 schedule intact. In my personal opinion which there is no way I will share with anyone but dh, this level of vigilence is pretty much unheard-of. Logistically, most families don’t have six children and their spouses all available to participate. Many or most people don’t have jobs that can accommodate a schedule like this (all the working people are business owners or have flexible work, ie. Real estate agent.) I don’t know if this arrangement would be more common if it were possible for more families. It seems a little bit hyper vigilent to me. It seems a little glass bubblish to me. 

Do you think it is unusual? 

[Zebra]

I think it's EXTREMELY unusual for 11 people to be available, and I also think that it's an unreasonable expectation for MIL to EVER have 24/7 care from family.

Just because she "needs" it doesn't mean it can be provided.   You all are human beings with complicated lives, just like everyone.   As inadequate as these rehab places may be sometimes, they exist for times that people can't live on their own, and family members can't take care of them.

I would really focus on what I thought I needed to do for MIL, and ignore the rest.

[mmasc]

I agree with ‘the Texan’. 🙂 yes, unusual, but great that you all can. Your MIL is blessed. I do think more families would do this kind of diligence right after a hospital release, but agree that it obviously isn’t sustainable. Maybe it will scale back once she’s even farther along after her hospital stay? I can only speak from experience and say that my dad was in the hospital and was released to a rehab/skill unit to get stronger with PT to return home. (He had dementia but was fairly young). He had had family with him nonstop around the clock in the hospital. It was taxing on us because we didn’t have the family size you’re describing. Once he was released to rehab, I talked my mom into going home just for that first night to rest. Just one night to catch up then she could stay if she wanted. She reluctantly agreed. He got up to go to the bathroom without calling the nurse, the bed alarm didn’t get them there fast enough, and he fell and broke his hip. He went immediately back to the hospital for surgery, then died within the week. So, I’m probably a bit biased on whether you can really trust anyone to get there fast enough in your MIL’s situation. However, I *fully* understand the effect that constant care places on a family. 

(Hugs) as you wade these waters with your MIL.

[Storygirl]

Does she sleep through the night? If so, perhaps the night time shift could be dropped.

Is she in her own room at all times? Would she be willing to sit in the common area during daytime hours? If she would sit in the common area, the staff would be more like to see that she is trying to get up and be able to assist.

I do think your family schedule is unusual. I don't think it is necessarily the wrong choice, but I think it is unsustainable for an extended period of time.

My mom didn't have 24 hour supervision. When she lived with me, I had to sleep. Mom did get up and do things in the middle of the night, but she was physically agile and not a fall risk. It still bothered me, a lot. Once she moved into the nursing home, there at least were people on the nighttime staff who were awake, but they weren't watching what she was doing in her room at all times.

When Mom moved into the nursing home, they cautioned us not to visit her for a bit, in order to let her get used to her new "home," so we never considered being there with her all of the time. Frankly, the rest of my family wouldn't have agreed to that, anyway, and I lived three hours away. My family would have said that to let the staff do the job we are paying them for. Now, there is a point to that, but it's also important to ensure safety and good care for loved ones in a nursing facility, so there is a balance.

I would say that your family could work toward a better balance of being hands-on and trusting the nursing staff. I'm guessing that it will need to be someone else's idea to cut back, though. Do you know how long her rehab stay will be? Will she then go into skilled nursing?

Could your husband suggest that the family hire someone to take over the night shift, if your MIL is not sleeping through the night? That would cut back the family assistance by 1/3 and could be a place to start.

Finally, I think your MIL is very fortunate to have so many children who are willing to step up and help her extensively. Believe me, it is not common. She is blessed.

[Annie G]

When MIL battled dementia and cancer at the same time, sister in law refused to let us get any outside help so we did it all- there were five of us who did it up until the last two weeks when we had 3 hours a week of hospice help come in.  We were exhausted and needed to sleep so we put bed rails on MIL’s bed. She couldn’t get out of bed with those on.  For real, why has the rehab facility not put those in place? Surely there are a LOT of people who need to be reminded they can’t get up. Heck when dh had his bypass surgery he’d wake up and have to pee and totally forget he had chest tubes in him and he’d try to get up normally.  A life of walking up half asleep and needing to pee has taught us to do things automatically.

Is the family expected to do this when MIL comes home? Because she might always need help getting up to use the bathroom, and it’s exhausting to continue to be on call like that for an extended period of time. It has taken us a full year to recover from caring for MIL and our relationship with SIL is still mending.  Elder care isn’t for sissies!

So sorry, Quill. Your family is doing an awesome thing for MIL, but I feel for you. It’s hard. 

 

[Chris in VA]

It seems doable, to me. It's one shift, every 3-4 days, right? So a little less than once a week, for 8 hours. And she's improving. 

I do think this is super unusual. And she's lucky to have you guys. And she should have rails. And it's not sustainable for years, but maybe til she's out of rehab (any idea when?). 

Good on you guys for being so caring and compassionate. 

[Guest]

4 minutes ago, Storygirl said:

Does she sleep through the night? If so, perhaps the night time shift could be dropped.

Is she in her own room at all times? Would she be willing to sit in the common area during daytime hours? If she would sit in the common area, the staff would be more like to see that she is trying to get up and be able to assist.

I do think your family schedule is unusual. I don't think it is necessarily the wrong choice, but I think it is unsustainable for an extended period of time.

My mom didn't have 24 hour supervision. When she lived with me, I had to sleep. Mom did get up and do things in the middle of the night, but she was physically agile and not a fall risk. It still bothered me, a lot. Once she moved into the nursing home, there at least were people on the nighttime staff who were awake, but they weren't watching what she was doing in her room at all times.

When Mom moved into the nursing home, they cautioned us not to visit her for a bit, in order to let her get used to her new "home," so we never considered being there with her all of the time. Frankly, the rest of my family wouldn't have agreed to that, anyway, and I lived three hours away. My family would have said that to let the staff do the job we are paying them for. Now, there is a point to that, but it's also important to ensure safety and good care for loved ones in a nursing facility, so there is a balance.

I would say that your family could work toward a better balance of being hands-on and trusting the nursing staff. I'm guessing that it will need to be someone else's idea to cut back, though. Do you know how long her rehab stay will be? Will she then go into skilled nursing?

Could your husband suggest that the family hire someone to take over the night shift, if your MIL is not sleeping through the night? That would cut back the family assistance by 1/3 and could be a place to start.

Finally, I think your MIL is very fortunate to have so many children who are willing to step up and help her extensively. Believe me, it is not common. She is blessed.

She does wake in the night to use the bathroom. She wears incontinence products but wants to use the bathroom whenever possible. She gets up 3-5 times a night for bathroom. 

They do have one hired assistent whom they already had two or three days a week before her fall. I don’t know if she does overnights, though; I assume that would be significantly more expensive if she does and the siblings probably think why pay for that so long as it is possible to do it ourselves. 

I think the goal is to get her rehabilitated and then return her to the home of the sibling who was on rotation having her stay with them. It is possible the paid care nurse will do more hours when/if that happens. In my personal opinion, which I do not share with anyone but dh, I think it would be better for this to become her “new home.” In my imaginary scenario, we would keep a daily schedule of all willing parties visiting her for a few hours at least and she would live there indefinitely. When she is staying at one of the kid’s homes, it is an enormous load of stress on that family and a large part of the reason is medical care that arises. At the facility, this is no issue because medical care is constantly available. 

But it is scary to think of her falling and breaking any other bones. 

 

[Guest]

7 minutes ago, Chris in VA said:

It seems doable, to me. It's one shift, every 3-4 days, right? So a little less than once a week, for 8 hours. And she's improving. 

I do think this is super unusual. And she's lucky to have you guys. And she should have rails. And it's not sustainable for years, but maybe til she's out of rehab (any idea when?). 

Good on you guys for being so caring and compassionate. 

It’s doable, but it doesn’t work out evenly to one shift every 3-4 days. One sibling is a turd, which I have mentioned before. And I confess to not being as regular as others because I am doing my cancer treatment stuff. 

No idea when she will be out of rehab. She should have rails, that is true, but she also purportedly will try to climb over the rails. (One SIL has them on the bed at her house. She has been “caught” trying to climb over them.) 

[Chris in VA]

Oh, I was just counting 3 a day, with 11 people. My math isn't that great! lol

[mmasc]

10 minutes ago, Quill said:

She does wake in the night to use the bathroom. She wears incontinence products but wants to use the bathroom whenever possible. She gets up 3-5 times a night for bathroom. 

They do have one hired assistent whom they already had two or three days a week before her fall. I don’t know if she does overnights, though; I assume that would be significantly more expensive if she does and the siblings probably think why pay for that so long as it is possible to do it ourselves. 

I think the goal is to get her rehabilitated and then return her to the home of the sibling who was on rotation having her stay with them. It is possible the paid care nurse will do more hours when/if that happens. In my personal opinion, which I do not share with anyone but dh, I think it would be better for this to become her “new home.” In my imaginary scenario, we would keep a daily schedule of all willing parties visiting her for a few hours at least and she would live there indefinitely. When she is staying at one of the kid’s homes, it is an enormous load of stress on that family and a large part of the reason is medical care that arises. At the facility, this is no issue because medical care is constantly available. 

But it is scary to think of her falling and breaking any other bones. 

 

I know you won’t be the one to bring up the subject (maybe DH?), but this really is the time to have the family conversation about whether this should be her ‘new home’.  It would be easier to make the transition with her already there for sure. 

[Guest]

Quote

Is the family expected to do this when MIL comes home? Because she might always need help getting up to use the bathroom, and it’s exhausting to continue to be on call like that for an extended period of time. It has taken us a full year to recover from caring for MIL and our relationship with SIL is still mending.  Elder care isn’t for sissies!

It is expected. When she stayed at our house, she was in a bit better condition. She did get up in the middle of the night, but she was not using a walker and there was no expectation of helping her through the night. But in the past two or three stays with different siblings, someone has slept near her and wakes up to help her in the night. I agree that it is an exhausting level of care. Also, though, the injury that landed her in the hospital happened in the early morning, so it seems likely to me that she got up unnoticed to go potty and either had a bp drop and fainted or was disoriented and stumbled. 

We have sort of “escaped” our turn with this new level of expectation because I have cancer, so our turn has been postponed for now. 

[Storygirl]

If/when she returns to live with her child/ren, it sounds like she will need nighttime supervision. It's just untenable for family members to give up sleep for extended periods, while also being on duty full time during the days. So it sounds like a nighttime aide is going to be needed, regardless. It might be a good time to set that up.

Your husband, if he is willing to speak up, might point out that being up all night makes people less effective caregivers during the day. And less effective at their regular life duties, as well. It would relieve a great measure of stress to put a paid nighttime care routine in place. And less stress equals better care for MIL.

[Guest]

5 minutes ago, Chris in VA said:

Oh, I was just counting 3 a day, with 11 people. My math isn't that great! lol

No, I understood that. It’s just that it doesn’t work out in even “turns”. It is on Sign Up Genius so people fill in spaces as they are willing and able, which means some folks take more shifts, some take fewer. One turd takes one every two months *snark*. 

[Zebra]

FWIW I come from very dysfunctional family relationships on both sides, and I won't go into it, but that's where I am coming from.  

What I am not understanding is why you can't nicely say to SIL(who I am guessing is semi-reasonable?), "that's nice that you have this whole plan, I can't do that much".   No justification, just you are an adult human being who can't do this.  And to SIL, if you want to go forward with this, I can't help.   Or, I can help X much.

I don't feel like that is an unreasonable conversation to have.   And if she reacts badly, that seems like her problem and not yours.  

 

 

 

[Faith-manor]

This is highly unusual and frankly I worry about the long term effects on the family. I know that in my case, I tanked my health taking care of my mother and her husband and due to that will consider a trip to Oregon or Switzerland when things get tough for me to spare my own kids ruining their health and well being by over doing elder care. That's how strongly I feel about it. Eldercare has ripped many,many years off my life and nearly destroyed my marriage.

How do people remain employed? Does everyone have grown kids? I can tell you that if mom has another event, she will simply have to go to a nursing home and no, there won't be a rotation to make sure she is visited every day. I'd lose my job, my brother would lose his job, and well, my sister lives in France so she wouldn't be able to take part in it at all. There is only one grandchild who lives permanently close by, and she has three very young children and is now single parenting. She is a dedicated young lady, and she would very likely troop her kids to the home once per week, but shifts at a hospital or a nursing home would not be happening. My boys would be available on college breaks but that is it. The other grandkids live anywhere from 85 - 750 miles away. OP I think that what you have going is very unique, a fairly large family and all of them in close enough proximity with enough flexibility of scheduling to keep up this cycle. Most families do not have enough people or enough flexibility to even consider it. And frankly, one has to consider SHOULD it continue. At this point you are likely not the only one with a major health issue. If sibs are guilting each other and the in laws into doing this extreme level of care, it is entirely possible that others are hiding health information from others either for the sake of privacy or out of guilt/wanting to keep family peace. The stress this kind of thing takes is huge and not everyone can handle that so I would expect others are suffering but not saying anything.

[SereneHome]

When my grandmother was in a rehab / nursing home after she broke her hip, my mom was either there or hired people to be there.  But my grandmother didn't speak English much.  But even if she did, we always thought patients get better care if they  have advocates there and staff sees that.  But it still wasn't 24/7. It was mostly during the day.  But bathroom was not an issue as she wasn't getting up at that point and we just had to make sure that she was changed frequently, etc.

When my FIL was in a rehab after breaking his ankle, my MIL lived there with him.  Yep, for 2 months she didn't leave the room.  I have no idea why.  He was completely coherent.  But that's how they are, I guess.

So, that's all I know.  I think in US that type of care, 24/7, is extremely hard on families.  And while I am all about taking care of families and elders, I don't know if it's realistic for most people.  If it's doable, then of course, it's wonderful.  But how doable is it really?

[QueenCat]

My mom's in rehab right now. I don't live near enough to visit daily or even every other day. My sister visits her for an hour a day. From what I can tell, that is very normal. There are things to do that can keep the patients social. I can't imagine someone being there 24/7. I personally think that's crazy in a rehab setting. So different than the hospital. If I lived near my mom, I'd likely visit for about an hour "most days," longer on the weekend. 

[Zebra]

17 minutes ago, Faith-manor said:

This is highly unusual and frankly I worry about the long term effects on the family. I know that in my case, I tanked my health taking care of my mother and her husband and due to that will consider a trip to Oregon or Switzerland when things get tough for me to spare my own kids ruining their health and well being by over doing elder care. That's how strongly I feel about it. Eldercare has ripped many,many years off my life and nearly destroyed my marriage.

How do people remain employed? Does everyone have grown kids? I can tell you that if mom has another event, she will simply have to go to a nursing home and no, there won't be a rotation to make sure she is visited every day. I'd lose my job, my brother would lose his job, and well, my sister lives in France so she wouldn't be able to take part in it at all. There is only one grandchild who lives permanently close by, and she has three very young children and is now single parenting. She is a dedicated young lady, and she would very likely troop her kids to the home once per week, but shifts at a hospital or a nursing home would not be happening. My boys would be available on college breaks but that is it. The other grandkids live anywhere from 85 - 750 miles away. OP I think that what you have going is very unique, a fairly large family and all of them in close enough proximity with enough flexibility of scheduling to keep up this cycle. Most families do not have enough people or enough flexibility to even consider it. And frankly, one has to consider SHOULD it continue. At this point you are likely not the only one with a major health issue. If sibs are guilting each other and the in laws into doing this extreme level of care, it is entirely possible that others are hiding health information from others either for the sake of privacy or out of guilt/wanting to keep family peace. The stress this kind of thing takes is huge and not everyone can handle that so I would expect others are suffering but not saying anything.

This.

[sassenach]

It is unusual but what a blessing! I think it’s pretty amazing. And honestly, if you have the ability to pull it off, I do think it’s better. Patients thinking they don’t need a nurse and taking a secondary fall is not unusual at all. 

[SKL]

It probably is unusual, but I would probably agree with the wisdom of continuing this a little longer until she can take herself to the bathroom or reliably call for help, given that there are so many people able and willing to help.  The alternative is too sad.  😞  Having worked in a rehab center, honestly most of the residents pee their beds because they don't get to the bathroom in time.

[Guest]

1 hour ago, Zebra said:

FWIW I come from very dysfunctional family relationships on both sides, and I won't go into it, but that's where I am coming from.  

What I am not understanding is why you can't nicely say to SIL(who I am guessing is semi-reasonable?), "that's nice that you have this whole plan, I can't do that much".   No justification, just you are an adult human being who can't do this.  And to SIL, if you want to go forward with this, I can't help.   Or, I can help X much.

I don't feel like that is an unreasonable conversation to have.   And if she reacts badly, that seems like her problem and not yours.  

 

 

 

No, I don’t personally feel an expectation is placed upon me which I cannot meet. Nobody has confronted *me* with, “Gee, Danielle. Why aren’t you on the schedule more often?” The SIL who is managing the sign up genius is reasonable and is, in fact, a breast cancer survivor herself. If it happens that someone does hint or directly pressure me that I need to sign up more or overnight, I am fully prepared to say, “I cannot do more than I am doing right now. Sorry I cannot be of more help.”

The only thing that bothers me a bit is I don’t know what the long-term expectation will be. It seems a little hypervigilent to me. 

[Guest]

1 hour ago, Faith-manor said:

This is highly unusual and frankly I worry about the long term effects on the family. I know that in my case, I tanked my health taking care of my mother and her husband and due to that will consider a trip to Oregon or Switzerland when things get tough for me to spare my own kids ruining their health and well being by over doing elder care. That's how strongly I feel about it. Eldercare has ripped many,many years off my life and nearly destroyed my marriage.

How do people remain employed? Does everyone have grown kids? I can tell you that if mom has another event, she will simply have to go to a nursing home and no, there won't be a rotation to make sure she is visited every day. I'd lose my job, my brother would lose his job, and well, my sister lives in France so she wouldn't be able to take part in it at all. There is only one grandchild who lives permanently close by, and she has three very young children and is now single parenting. She is a dedicated young lady, and she would very likely troop her kids to the home once per week, but shifts at a hospital or a nursing home would not be happening. My boys would be available on college breaks but that is it. The other grandkids live anywhere from 85 - 750 miles away. OP I think that what you have going is very unique, a fairly large family and all of them in close enough proximity with enough flexibility of scheduling to keep up this cycle. Most families do not have enough people or enough flexibility to even consider it. And frankly, one has to consider SHOULD it continue. At this point you are likely not the only one with a major health issue. If sibs are guilting each other and the in laws into doing this extreme level of care, it is entirely possible that others are hiding health information from others either for the sake of privacy or out of guilt/wanting to keep family peace. The stress this kind of thing takes is huge and not everyone can handle that so I would expect others are suffering but not saying anything.

In our unique case, employment is not an obstacle. Two are retired or semi-retired. Not one person has a FT, 9-5 employment type of job. The family with the youngest children has an 8yo, which I grant you is pretty young, but is in school or activities. 

I think it is highly unlikely that someone else is sitting on a major health issue and not mentioning it. The family is too close for that. One SIL confessed that she is not that available because her horse is critically ill. I just think, the proximity we all have to one another and the level of involvement we all have would make it extremely unlikely that someone is doing major health issues for themselves but not saying so. They would want the others to know they are not in a position to be very helpful. 

There’s not a lot of pressure going on. I just think it is pretty weird to continue with a 24/7 schedule stretching indefinitely into the future. Right now, there is still that expectation up until Christmas. I don’t know yet what we might do for Xmas; perhaps she will be well enough to be checked out of the facility for several hours. 

[happi duck]

Ime, not unusual.  I see 50/50 of making sure there is someone there 100% of the time or making sure there is someone making a daily visit.

[hornblower]

4 hours ago, Annie G said:

  We were exhausted and needed to sleep so we put bed rails on MIL’s bed. She couldn’t get out of bed with those on.  For real, why has the rehab facility not put those in place? Surely there are a LOT of people who need to be reminded they can’t get up. 

 

Current fall prevention guidelines here are the rails by the head are up but the foot rails must be down because people climb OVER them and fall even further. We do use bed alarms though. Anyone who is a fall risk must also wear anti slip socks at all times. 

[hornblower]

From the perspective of the patient, does she appreciate the company?  I think if she enjoys it and people can do it, then great. 

From a nursing student perspective, one thing I learned a lot about in school this semester was the importance of encouraging appropriate independence. There's support and then there's hovering so much and doing so much for the person that they stop doing things for themselves.  The natural trajectory for kids is to gain independence with our help but with elders, they can start losing independence as a result of our help. So that would be one thing I'd think about and to what extent is she likely to resume her previous level of independence and is the care she's receiving helping or hindering that. 

[Annie G]

2 minutes ago, hornblower said:

Current fall prevention guidelines here are the rails by the head are up but the foot rails must be down because people climb OVER them and fall even further. We do use bed alarms though. Anyone who is a fall risk must also wear anti slip socks at all times. 

Good to know! MIL was not in any way able to crawl out of the bottom but Quill’s MIL might be able to.   And that’s good info to know because my dad will probably need some nighttime care in the not too distant future.  

[Katy]

This is weird, and is the reason bed alarms and rails were invented. Why bother with rehab if she's going to get constant family care?

 

ETA: and at the rate rehab costs, if they aren't keeping constantly properly staffed someone needs to complain to whatever agency in that state handles it.  Seriously, there aren't many nurses aides who won't take an extra shift for triple time, and rehab facilities are more than able to pay that.

Edited December 19, 2018 by Katy

[TechWife]

I've been thinking about your post all morning. I don't envy you - I have many fresh, raw memories of this time with my parents.

Family support is a wonderful thing. If your MIL requires 24/7 supervision and the family is willing and able, it's a great thing to do. Honestly, my family did it with two people and one hired aid. The fact that there are so many people in rotation to care for your MIL is astonishing. Compared to what went on with my family, it seems like a dream scenario.

I do think that it might be time to sit down with the case manager/social worker at the facility though and talk about goals for independence, whether or not they are realistic, and how to facilitate them, if they are. If not, then figuring out 24/7 care would be the way forward. Whether this is provided in a home setting or a care facility is part of that discussion, as is the manner in which you can go about providing them in a home setting.

With dementia, and aging in general, at some point 24/7 care becomes a necessity. People with dementia get days & nights mixed up and often wander during the night. A good case manager/social worker can help the family think forward to the future. What your family has been doing has worked up until now, but it's time for a look at what things will be  like in the short and long term. What do you all envision as the point at which it will no longer be wise to move your MIL so frequently? When she wanders? When she's bedridden? What will happen then? Do you have safety measures in place to locate her if she wanders? Will she wear a GPS tracker of some kind reliably? Will you put alarms on the doors so you know when they will be opened? At some point, are different families going to drop out of the care rotation based upon what they think they can do? What is that point for each family and where will that leave MIL in the end? When the last person needs to drop out, what is the plan? Is it better to just go with that plan now?

Honestly, with your cancer in the picture, I think your family should drop out of the care rotation entirely. Your family's energy and attention needs to be focused on you and your treatment and long term recovery. Part of that will be you and your husband coming to terms personally with your limited participation in her care. It's hard to do that. Your husband may feel torn in two different directions right now - both his wife and his mother need him. He may feel badly no matter what he does, even though he can intellectually acknowledge that you are his priority.

The only tip I can give is to set your boundaries and have your husband communicate clearly to the other siblings what those boundaries are. Also articulate to them that the boundaries may move in the future and that as soon as you recognize the need to move them, he will let them know. Support them with phone calls and notes as you are able, as well as an occasional visit to MIL as you are able, but remember to not let them count on you for care. It sounds like they are all being supportive of you right now & I so hope they are able to keep that perspective as the road of caring for parents is long and full of twists and turns.

I'm sorry I don't have more concrete advice for you.

[kbutton]

6 hours ago, Storygirl said:

If/when she returns to live with her child/ren, it sounds like she will need nighttime supervision. It's just untenable for family members to give up sleep for extended periods, while also being on duty full time during the days. So it sounds like a nighttime aide is going to be needed, regardless. It might be a good time to set that up.

Your husband, if he is willing to speak up, might point out that being up all night makes people less effective caregivers during the day. And less effective at their regular life duties, as well. It would relieve a great measure of stress to put a paid nighttime care routine in place. And less stress equals better care for MIL.

I agree strongly with this--you can't sprint a marathon. I know it's more like a relay right now, but it's not going to be that way long-term. It's probably going to get more intense, not less. Alternatively, if they don't think your MIL will be continent for much longer, maybe this is the home stretch, and you can make plans contingent upon what happens when getting up for the potty is no longer a problem, assuming there isn't another reason to be supervising 24/7. I strongly suspect there will always be something that comes up, and it would be good to pace yourselves now.

4 hours ago, Quill said:

There’s not a lot of pressure going on. I just think it is pretty weird to continue with a 24/7 schedule stretching indefinitely into the future. Right now, there is still that expectation up until Christmas. I don’t know yet what we might do for Xmas; perhaps she will be well enough to be checked out of the facility for several hours. 

I think that setting parameters is really good even if the consensus is that you all want to keep it up. Talking about it, making a point to evaluate it on a every x number of days/weeks/"this changed" basis, and making it okay to talk about it proactively might be the healthiest thing that the family can do because the decisions are probably only going to get harder.

2 hours ago, Katy said:

This is weird, and is the reason bed alarms and rails were invented. Why bother with rehab if she's going to get constant family care?

I agree, lol!

I know bed alarms aren't perfect, but she needs one. If it goes off a bunch, then maybe the facility will offer additional suggestions, or maybe it will spur another discussion among family members about the long-term feasibility of the problem.

[Melissa in Australia]

other completely other

 here in Australia only very small children have someone with them at all times in hospital. adults including elderly do not have someone sitting by their bed day and night. nobody else in the room would be able to get any rest if this was allowed. 

[TechWife]

2 hours ago, Melissa in Australia said:

other completely other

 here in Australia only very small children have someone with them at all times in hospital. adults including elderly do not have someone sitting by their bed day and night. nobody else in the room would be able to get any rest if this was allowed. 

Here patients have the right to have an advocate with them at all times. Also, due to privacy regulations surrounding medical information, hospitals are moving to small private rooms. New hospitals have been built this way for many years and older hospitals are slowly being renovated. Long term care facilities still have semi private rooms because Medicare doesn’t reimburse for private rooms in those facilities. Newer rehab facilities are being built with private rooms, though. Even NICU units are moving to private rooms - our hospital has added 35 NICU rooms (most are private, some are sibling rooms for multiple births) and has 13 remaining bay beds. Even the babies that are in bay beds are allowed to have both parents with them at all times. 

Edited December 19, 2018 by TechWife

[Melissa in Australia]

the idea of anyone sitting in the hospital day and night with a relative that isn't a small child is such a foreign concept to me I cannot imagine it at all.

[Catwoman]

9 hours ago, Quill said:

This is about my MIL, who is now in a rehabilitation facility after her fall and injury of last Monday. My disclaimer: I love my MIL and am perfectly content to do it this way. It isn’t causing any hardship for me or my family. My main question centers around thinking it is very atypical. So, here’s the situation:

There are eleven people available to participate in this. One SIL made a Sign Up Genius while MIL was still in the hospital, to have one of us in the room 24/7. There are three “shifts” per 24 hour period: a morning, an afternoon/evening and an overnight. (Personally I thought four shifts made more sense, but whatever.)

While in the hospital, I did think this was best. She was highly confused, could not get out of bed on her own, wouldn’t have been able to communicate questions about her care or medications, etc. Now, though, in my personal opinion which I have NO intention of trying to persuade anyone about, we could begin cutting down the constant vigilance now. MIL is enormously improved and has been much more clear about her own care and what is going on. She understands the nurse call button, for example. She is walking with PT help. She has taken a shower and dressed in regular clothing for two days (with assistance).

The biggest potential problem is she will think, “need to go potty” and will not call a nurse. She will think she can just get up and walk to the bathroom. This seems to be the main reason the majority of people think we should keep the 24/7 schedule intact. In my personal opinion which there is no way I will share with anyone but dh, this level of vigilence is pretty much unheard-of. Logistically, most families don’t have six children and their spouses all available to participate. Many or most people don’t have jobs that can accommodate a schedule like this (all the working people are business owners or have flexible work, ie. Real estate agent.) I don’t know if this arrangement would be more common if it were possible for more families. It seems a little bit hyper vigilent to me. It seems a little glass bubblish to me. 

Do you think it is unusual? 

 

Being at the hospital 24/7 for many weeks wouldn’t be unusual for our family — and we have never had more than two people who were available to take shifts. It’s very difficult, but I have never resented doing it. (I won’t say I wasn’t exhausted, though!) 

I certainly wouldn’t recommend that you do anything more than short occasional visits, though, because right now you and your dh need to focus on your health. There are other people in the family who can care for your MIL. You need to take care of yourself! 

[Catwoman]

4 minutes ago, Melissa in Australia said:

the idea of anyone sitting in the hospital day and night with a relative that isn't a small child is such a foreign concept to me I cannot imagine it at all.

 

It has become a very common thing in the US. I think it’s very good for the patients, as long as the visitors aren’t disruptive to the nurses or the other patients. 

[Storygirl]

14 minutes ago, Melissa in Australia said:

the idea of anyone sitting in the hospital day and night with a relative that isn't a small child is such a foreign concept to me I cannot imagine it at all.

Once they reach a certain stage of decline, dementia patients are like a small child in their ability to act, care, and speak for themselves.

DH's mother was in the hospital last December. She does not have dementia but was having extreme cognitive impairment due to her health condition. FIL and one or the other of the children were with her 24/7, and DH says that kind of help was needed. She really was not safe to leave alone. But it was temporary (2 weeks).

Perhaps in Australia the patients in the hospital get more individualized attention than here in the US. With patients mostly in their own rooms, the nurses cannot see what is happening with every patient at all times.

[Mbelle]

We also do 24/7 while in the hospital, but not at nursing facility or aftercare.  At that point we reduce to daily.

One time my parents/aunts/uncles hired overnight caregiver.

edited: we have lots of family nearby so this is not very difficult for anyone.

Edited December 19, 2018 by Mbelle

[TechWife]

45 minutes ago, Melissa in Australia said:

the idea of anyone sitting in the hospital day and night with a relative that isn't a small child is such a foreign concept to me I cannot imagine it at all.

I'm aware of so many things that have gone wrong & could go wrong, I can't imagine willingly leaving anyone alone in the hospital.

[Guest]

4 hours ago, Æthelthryth the Texan said:

I don't think there are many staffs, even in the best homes, where an aide can respond to an alarm fast in enough to keep a determined dementia patient in bed. And that's sad, but it's true. By the time that alarm sounds they can very well be over the rail. 

Yes, it is this. IMO, this is a very good facility; top notch. The staff with whom I have interacted are terrific. It is not a matter of their being understaffed or staffed with incompetent carers. (At the hospital, there was one nurse whom I considered incompetent.) It’s simply the fact that staff is not 1:1. 

Also, when we are there, we aren’t being nurses. We’re company and we’re overseers. We are the second pair of eyes and the second “brain” watching for what is going on and seeing if it’s good. 

[Melissa in Australia]

1 hour ago, Patty Joanna said:

 

Yes.  For a time, it was better for my MIL to be in a rehab place; she has moved back to her apartment now as of yesterday.  She was so DONE with being so confined, and it is her prerogative to choose where she stays (there is no dementia, so I'm not actually comparing situations but using this one to make my point--eventually).  She has been in and out of hospitals/rehab since early June, after DH found her unconscious on the floor through blood loss when he "for no reason just happened to stop by her apartment."  Had he been even a few hours later, she would have died.  

So here is the point:  There is no guarantee that she won't fall again.  There was no guarantee she would not fall at the rehab place, no matter how many alarms and so on were in place.  The difference is that at rehab, someone would notice.  In her apartment, no one will.  That puts a certain amount of watchfulness back into our lives, but we can't move in with her, and she can't live here (stairs), and we can't watch her 24/7/365.  We might get a web-cam and set that up, but that's $$$ and IDK if she wants that intrusiveness.  

She is a rational person, and she has a right to make her own decisions.  It might be that she falls and that she dies from it, but she KNOWS that and it is her choice to live in the privacy of her own place (hermitage) rather than to live more safely in a place she hates.  I get it, and so does the social worker who manages getting us through all the care issues. The plan is that when an assisted living place opens up, she will move there; it might be a matter of days, or weeks...she didn't want to sit in rehab one minute longer.

This is where a Living Will/EOL plan comes in.  IF MIL becomes demented, we will have her words to go on and to make decisions that will best reflect her new needs and her rational desires.  My dad did, although he did not suffer dementia, and it was a LOAD off my mind when we had to make EOLife decisions when he was too weak to do so.  

Mostly I'm musing.  The thing I really wanted to say is underlined, above.

you can get one of those alert necklaces that can sense when the person falls 

 

Edited December 19, 2018 by Melissa in Australia

[Guest]

To @TechWife and @Catwoman and anyone else who raised the point of my own health: I don’t feel the need to bow out at the moment because I’m not *doing* anything at the moment, cancer-treatment-wise. I went yesterday for my radiation planning, got tattooed and photographed, and so that did require energy and I was on medication and came home and conked out for a few hours. (Also, Monday I was tending to my mother, who was going for biopsy results, but luckily those were good-ish - good enough that she doesn’t need to do anything right now. So that was exhausting, too.)

But I do feel as though I want to contribute my help before my radiation sequence begins because after that, chances are good I won’t take any shift at all, asssuming they are still doing this shift schedule. Dh can definitely still be in the rotation. I think in terms of who had the more alarming situation, it is probably MIL at the moment. 

[Katy]

A person who is so confused that she cannot remember she isn't capable of getting up on her own and needs to call for assistance needs to stay in a nursing home IMO.

[ktgrok]

3 hours ago, Melissa in Australia said:

the idea of anyone sitting in the hospital day and night with a relative that isn't a small child is such a foreign concept to me I cannot imagine it at all.

Medical care must be much better there. Here, nurses are overworked and mistakes are not uncommon, sometimes with disastrous results. 

[PinkyandtheBrains.]

We made sure my mother was never left alone.  Nurses are overworked. Not everyone is nice. 

[prairiewindmomma]

Quill, the thing that strikes me is that right now it is taking nearly a dozen of you to staff for MIL and yet the plan is that at some future point, two will be expected to do the same job....for months at a time without a break.

Is there still some unrealistic hope that she is suddenly going to sleep through the night, maintain her balance, and be able to take care of her toileting needs appropriately? 

 

[katilac]

4 hours ago, kbutton said:

 I know bed alarms aren't perfect, but she needs one. 

 

Yes. Humans are also not perfect - just as she could fall before the bed alarm goes off, she could also fall before her carer wakes up. 

3 hours ago, Patty Joanna said:

We might get a web-cam and set that up, but that's $$$ and IDK if she wants that intrusiveness.  

 

FYI, they're actually pretty cheap. We have webcams for the cats and sugar gliders, we can watch them on our phones 😄

I spoke to this a bit in the other thread: I think that 24-hour care is very tough. Even with a good number of carers, it's hard to do in the long-term. I have direct experience in one case and indirect experience in several cases. One issue is that a determined focus on 24/7 almost inevitably creates some dependency and fears in the patient. They worry out of proportion if someone is late. If nothing else, I would intentionally create some short gaps in care so they are less likely to develop a strong fear of being alone. 

It is also impossible to foresee how long it will go on for. Someone who seems near the end can go on to live for a decade. Someone who improves enough to not need that level of care may be very reluctant to give it up - I have seen that more than once; again, they get so used to someone being there and develop that fear of being alone. 

OP, you do have a lot of people in the mix, but they should not be counting on you or your husband when making long-term plans. The family with an 8-yr-old (and maybe older sibs?) may find it tough long-term as well. 

I lost track of the post, but I agree with the person who suggested looking at all angles and involving a social worker when making plans. 

[katilac]

20 minutes ago, Patty Joanna said:

It would be cheap to set it up at our own house.  THERE, we would have to a) get internet and pay for it by the month out of her $50 a month medicaid allowance, b) set up whatever computing device is needed and c) get the webcam stuff.  

 

Oh, yeah, I was definitely assuming internet already existing on both ends! That would be the biggest expense.

[Ravin]

Mom: siblings who live near her (mostly my sisters J and K) help. They make sure she has company when she has been hospitalized, and that the kids (youngest two sibs are 11 and 9) are taken care of. 

Dad: He's stepmom's problem. No one else wants to put up with him long enough to actually assist in caring for him should he need it. We love him, but we've all learned something about boundaries.

[Guest]

1 hour ago, Katy said:

A person who is so confused that she cannot remember she isn't capable of getting up on her own and needs to call for assistance needs to stay in a nursing home IMO.

Well, I agree, but it’s not my call to make. 

I will say, though, that I think it’s more like another poster said upthread: you’re used to a lifetime of feeling the need to go pee and you automatically begin to move to do what you have done all your life: get up and walk to the bathroom. 

There are actually other issues that seem more (to me) like good reasons to her to remain there. (There are different sections from retirement living all the way to nursing care, so a person could move from one section to another while remaining there.) 1. Her bp is still not consistent and we have not puzzled out exactly how to make it stabilize. One day, she is much better; the next, she’s bottoming out again. 2. The facility is, of course, perfectly arranged to suit people with mobility obstacles and medical needs. Our houses are not and can never be quite as ideal as the facility. (My house is actually among the worst because there is no full bathroom on the main floor and one cannot even enter or exit the house without going up steps.) 3. A medical incident that can be managed fine at a facility requires at least a doctor trip, if not ER trip, when it happens in our homes. And 4. is not crucial, but I think there is something to it: at the facility, she could meet people and have new conversations and do different things. When she’s at our homes, everything revolves around our families and, though we include her in things, she’s not really experiencing anything novel. I conceed that I may be thinking of something that doesn’t really happen there; maybe too many of the residents are in their own little world for those kind of connections to really happen; I don’t know. But I do like, in theory at least, the idea that she could talk to “new” people and experience different novel things. 

Sorry I wrote a book; I know there’s no need to convince anyone. I think I wanted to think that through “out loud.”

[Guest]

57 minutes ago, prairiewindmomma said:

Quill, the thing that strikes me is that right now it is taking nearly a dozen of you to staff for MIL and yet the plan is that at some future point, two will be expected to do the same job....for months at a time without a break.

Is there still some unrealistic hope that she is suddenly going to sleep through the night, maintain her balance, and be able to take care of her toileting needs appropriately? 

 

Well, this is pretty much how I see it. I was not, ever, in my mind thinking she would be all fixed up and return to the home where she was staying. The day she fell and broke bones, I posted on here about researching care facilities “just in case” (in reality, my opinion was never consulted nor necessary) because I see it just as you said here: how can she ever get back to a point where she can safely and appropriately stay at one of our homes? 

I don’t know what is in the minds of those expecting this to be temporary until she is rehabilitated and then she will be discharged. I do not think anyone believes she can come to sleep all night. She will never do that from this point forward. Surely nobody can be thinking that. But there may be some who believe she can get her bo and balance issues resolved and then she will be reliably able to come back to homes. 

The way personality dynamics play out, there are two siblings who have dealt with very involved care (like sleeping on a folding bed near her and waking as soon as she stirs) but they both have very assertive and “gritty” personalities. I think they think something like, “yeah, it’s hard. So what?” I think the sibling who had her when she fell is less “gritty” and is more likely to think, “this does not work.” 

I think it will just have to play out how it plays out and I will go along with what I am able to until the situation changes in whatever way it will. I doubt this is the last time I will be talking about this here, lol. 

[Guest]

46 minutes ago, Æthelthryth the Texan said:

Its not just your genetics. We could not get my grandmother to wear one. And none of my friends have successfully gotten their parents or relative to wear one either. The few who have said sure, had enough memory loss they never remembered. The same for carrying a cordless phone or cell phone or any other alarming device. At this point I think it’s a sales gimmick. The cameras and fall laser alarm things seem like better investments, although I know no one who’s used one. 

Yeah, those darn Life Alerts...we did have one of those when MIL was still at her own house. Be was very unreliable about wearing it. She would go in the back of the property picking berries and would not wear the alert or bring her phone. She was totally unreliable about having her phone. 

They do seem gimmicky now, though. It was so hard to get that darn unit back to the company and have them STOP charging us. It was very annoying.