Question about what others do re: elder care

[Arcadia]

13 hours ago, Quill said:

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. 

 

My FIL’s siblings paid whatever amount they could (wealthiest sibling paying the most) for a caregiver for FIL’s mother.  The caregiver just stays with her all the time including at the hospital, mainly to push her wheelchair and to help her when she needs to use the toilet. Besides FIL’s mother has dementia so it is safer to have someone with her as a caregiver.  The caregiver gets food, lodging and pay, kind of like a live in nanny. FIL’s siblings and their spouses would help whenever they can so the caregiver can have her meals, run some errands if she need to or take a nap. They can’t afford to pay for in home nursing help so a live in caregiver was more affordable especially for long term.

[Reefgazer]

I think it is unusual only because most families don't have the personnel to pull it off.  But based on what I saw when my dad was hospitalized before his death, I would keep the 24/7 shift going as long as she is in the hospital.  There is not adequate staff to properly care for a high-maintenance elderly person, they will medicate against family wishes to keep them sedate and quiet, and as a watcher you can get them what they need.  We hired someone to just babysit my dad when we couldn't be there.  Your family is lucky you have the bodies to pull it off.

[Guest]

2 hours ago, Reefgazer said:

I think it is unusual only because most families don't have the personnel to pull it off.  But based on what I saw when my dad was hospitalized before his death, I would keep the 24/7 shift going as long as she is in the hospital.  There is not adequate staff to properly care for a high-maintenance elderly person, they will medicate against family wishes to keep them sedate and quiet, and as a watcher you can get them what they need.  We hired someone to just babysit my dad when we couldn't be there.  Your family is lucky you have the bodies to pull it off.

She’s not in a hospital now, though. She is at an elder care facility in the rehabilitation wing. 

[Mbelle]

2 hours ago, Quill said:

She’s not in a hospital now, though. She is at an elder care facility in the rehabilitation wing. 

In our family we would be cutting way back on the visits at this point.  No one would be staying the night and there would gaps of time during the day when they were on their own.  

[fairfarmhand]

11 hours ago, Quill said:

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. 

WRT to the “gritty” personality people. My dh is one of those. Despite that, he had severe struggles in the year of his father’s decline and the 18 months after his death. It was like he could muster the grit to handle his dad and his grief but as to being a great dad and husband—there wasn’t enough energy left for that. This is what nobody in our family talked about. All the spouses were bickering with each other and their marriages were struggling. There were at least 2 kids that I know of who’ve dealt with severe anxiety in the aftermath.The gritty personalities suffered A lot. They just often were not aware of how stressed and unhappy they were at the time. (But their immediate family were totally aware) this kind of long term strain takes a mental health toll. Big time.

[Valley Girl]

12 hours ago, Quill said:

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.”

Even though it's not your call, I hope your DH listens to what you have to say because you bring up important points.

And even though the decision isn't your call, it IS your call to say what you are willing to do. If that degree of help doesn't sit well with those whose call it is, well, that needs to be THEIR problem. You need to focus on your health and your family's well-being through your own crisis. Too often, I think family members who don't want to make hard decisions try to guilt people into doing what they can't and really, in some cases, shouldn't.  Good luck. It's tough, I know.

[J-rap]

I think it's highly unusual, and I do think you shouldn't be expected to be part of that.  My own mother is in the exact same situation right now.  Our family is a lot smaller; my two siblings and their spouses all work full-time still, and I live three hours away.  She's in a really nice rehab facility though.  My father drives there in the morning and is with her all day.  My siblings generally pop in after work and have dinner with her every other day.  (They trade off days.)  But no one is there at night.  At age 91, my father couldn't pull that off.  My siblings have to sleep at night because they work the next morning!  My mother does wear Depends at night, and I imagine that will continue when she returns home.  She has railings up on both sides of her bed, and a bed alarm.  I'm surprised your mother's facility doesn't do that.

When my dh was in a rehab facility for three months, I was with him every day from 9am to 9pm.  But I needed a break and knew he was in good hands at night.  He had rails and a bed alarm too.  He wasn't thinking clearly and did try and get up at night from time to time, so he really needed that bed alarm!  They also made sure those with the biggest fall risk were closest to the nurse's station.  My dh was right across the hall from the nurse's station.

[fairfarmhand]

By the way, the gritty people in the situation with my father in law would have been the last to admit that they were not okay. In fact, I don't even think they realized it on a conscious level. My dh and I have talked about it since then. We have this person who routinely behaves badly, is super touchy and irritable. My dh said, "When my dad was sick, did I act that way?" And I said "Uhhh...Yeah. It was SO bad." He apologized but acknowledges that he wouldn't have handled well someone saying "You're not okay. You may think you are but you're not." 

For the rest of us who were struggling and were aware of the struggle, there was no way to win. Just telling someone they were not doing okay would have started a big ugly fight. But otherwise, they definitely had the attitude of "It sucks. So what? I can deal. You should too. Stop whining." 

I wish I'd had the guts at the time to tell my dh "I'm NOT okay. I'm NOT coping. I need x y and z or I will fall to pieces." I didn't and I did fall to pieces. I haven't slept well for 5 years since his dad was diagnosed. I broke something in my body. And now it takes very little for stress responses to pop up all over the place. I have informed my dh that I WILL NOT live that way ever again. I reached my breaking point and went past it, and I think I am more aware now of my limits. If his mom or my dad start getting sick, I have a very clear idea of what I can do and what I can't and I will never again push past what I am capable of. I don't know if my dh understands what his limits are. That's not my job but I do know what I need to do if this situation ever arises again.

[Guest]

Quote

the way, the gritty people in the situation with my father in law would have been the last to admit that they were not okay. In fact, I don't even think they realized it on a conscious level. My dh and I have talked about it since then. We have this person who routinely behaves badly, is super touchy and irritable. My dh said, "When my dad was sick, did I act that way?" And I said "Uhhh...Yeah. It was SO bad." He apologized but acknowledges that he wouldn't have handled well someone saying "You're not okay. You may think you are but you're not." 

My dh does this. While we were waiting for my biopsy results, he totally bit my head off because I confused the names of two different tenants when we were talking. Like, I said, “Well, I will write to fairfarmhand and...” and he said, “It’s NOT FAIRFARMHAND! It’s SCARLET!” 

I was very tempted to say, “well excuse me for bothering you with my little might-have-cancer issue.” 

[fairfarmhand]

6 minutes ago, Quill said:

My dh does this. While we were waiting for my biopsy results, he totally bit my head off because I confused the names of two different tenants when we were talking. Like, I said, “Well, I will write to fairfarmhand and...” and he said, “It’s NOT FAIRFARMHAND! It’s SCARLET!” 

I was very tempted to say, “well excuse me for bothering you with my little might-have-cancer issue.” 

ugh...I'm married to a lasher outer too. Like it's too hard to acknowledge that you might have...you know feelings about your loved one suffering and dying. So instead you just eat people's faces and look like a jerk. And when people ask you say "Oh it's hard. But we're doing okay." And your wife and kids are standing behind you all bug eyed and thinking "On what planet?"

[DesertBlossom]

I don't have a lot to add to what has already been said, but just wanted to say you guys are doing awesome. No one prepares you for taking care of elderly parents and it's hard. 

They are 7 kids in my family and we get along remarkably well, but we differ on when we think we ought to be stepping in with my dad's care.  Currently he lives alone, with a lot of support from all my siblings. Someone drops by almost every day at least once. He probably shouldn't be living alone anymore, but he wants to live alone in the house he spent 50 years in with my mom. Some people think we are already at the point we should be stepping in to override my dad's opinion on his living situation and others think it's not quite time for it. (So by default we are still waiting to force the issue.)  But he's one bad fall away from injuring himself to the point even his kids can't care for him. 

It's so hard. 

[QueenCat]

22 hours ago, Catwoman said:

 

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. 

 

We do tend to do this with hospital stays but not with rehab. 

[katilac]

3 hours ago, DesertBlossom said:

 But he's one bad fall away from injuring himself to the point even his kids can't care for him. 

 

Have any safety features been added to his house? Like: grip mats for the bathtub or shower; grab bars for the bath, toilet, and hallways; motion sensor lights that go on when he gets out of bed - there are all kinds of things you can get! You can also do things like make sure the smoke detectors are working and that his bed is not too high. Some things aren't directly safety-related but can improve health and hygiene, like special silverware and long-handled shower brushes so they don't have to bend and twist around. Google terms like "independent living products" or "products for safe senior living" and you will find many products and much advice on preventing falls and such. 

I would be reluctant to try and override the decision of a fairly lucid senior. We all have differing levels of risk we are willing to accept. Some people would rather live at home for two years rather than live elsewhere for five years, and I think that's a valid decision. I would be more likely to intervene if dementia was involved, as they can't always make a considered decision and dementia tends to put other people at risk as well (fires caused by forgetting stuff on the stove, etc). 

[DesertBlossom]

24 minutes ago, katilac said:

 

Have any safety features been added to his house? Like: grip mats for the bathtub or shower; grab bars for the bath, toilet, and hallways; motion sensor lights that go on when he gets out of bed - there are all kinds of things you can get! You can also do things like make sure the smoke detectors are working and that his bed is not too high. Some things aren't directly safety-related but can improve health and hygiene, like special silverware and long-handled shower brushes so they don't have to bend and twist around. Google terms like "independent living products" or "products for safe senior living" and you will find many products and much advice on preventing falls and such. 

I would be reluctant to try and override the decision of a fairly lucid senior. We all have differing levels of risk we are willing to accept. Some people would rather live at home for two years rather than live elsewhere for five years, and I think that's a valid decision. I would be more likely to intervene if dementia was involved, as they can't always make a considered decision and dementia tends to put other people at risk as well (fires caused by forgetting stuff on the stove, etc). 

Yes, he's got those safety products in place. He also wears a Life Alert, which has been used more times than I can count at this point. He is mostly lucid, but we are seeing signs of dementia and paranoia. Like when he called the police because he was certain someone was in his attic. We are also concerned about a sketchy relative who should absolutely not be trusted that has dropped by for spontaneous visits and my dad has welcomed him in with open arms despite our protests. It's a complicated, tricky situation we are in.

[katilac]

2 hours ago, DesertBlossom said:

 We are also concerned about a sketchy relative who should absolutely not be trusted that has dropped by for spontaneous visits and my dad has welcomed him in with open arms despite our protests.  

 

Ugh. Some people are just awful. 

[mlktwins]

Not to derail Quill's post, but I am going to figure out how to set up a social group on here (after the holidays) for those of us dealing with the stress of elder care.  A place hopefully to talk freely.  I have only been dealing with my dad since September and my physical, mental, and emotional health has declined.  I have been 'gritty" so far, but I can't keep it up.  He doesn't do what he is capable of doing to make his life better and I have decided he isn't taking me down with him.  I love him, but I am not risking my health and not being here for my boys to finish growing up.  And...I really have no place to vent about it.  

To Quill, I am so sorry your family is dealing with this.  It is nice you have other people able to help with MIL.  

[sheryl]

Hey Quill,  We (brother, sister and I) have been through this with various family members over the last 10 years or so.   Kudos to your sil.  Quill, this is really smart of her and what we did (but we didn't have sign ups).  We would visit often.  We (dh, dd and I) made the 8-9 hour trip to Ohio (from NC) to visit my Dad as he was in/out of the hospital for about 1-2 years before her passed away.  My sister drove the 4 hours to visit often and when she did she stayed as her dd is grown.  My brother visited almost daily as he was local to my Dad.  We had the furthest drive so didn't visit as often.   Here's the thing - the hospital is the place to pick up germs.  It's ironic but true.  Perhaps now your mil doesn't "need"  WATCH hours during the sleep hours.  (I know she's monitored 24/7 and staff will check on her in the middle of the night).  Your (you and your family members) focus should be during the awake hours.  If she picks up something in the hospital they WILL change her med/s. Meds can conflict with other meds causing hallucinations (this happened to my Dad - and they were wild, unrealistic hallucinations).  I agree with you the 8 hour shift is unrealistic for most people.  It should be 4 hours or so during the awake hours.  Family members do need to be advocates for their loved ones.  Staff gets stretched and oversights are just made.  

[HS Mom in NC]

When my grandmother, who had dementia, was in a hospice facility after her stroke, my brother, step-brothers, and mother and some of our spouses took turns being with her so she was never alone for the first 2 weeks. It mostly mother, brother and me,which we were all perfectly fine with.  The last week and a half we went home during the nights and let staff only care for her. She couldn't walk, so bathroom issues weren't the same as you're dealing with. They weren't under staffed.

So in my world that's how we do it, but most families don't have enough adult descendants to handle that kind of load. Also, the adults all have different things going on in their lives, so not everyone is going to be able to take an equal share of Granny time.

[StephanieZ]

Not at all unheard of. It's my family strategy, and we are a very small family. 

Back story -- when my Dad was 60, in 2000, he had a serious stroke and was hospitalized out of state (he was on a business trip). I left my 13 month old nursing baby as well as my 3 year old (neither of whom I'd ever been apart from) for 5 days at a time to care for Dad, rotating with my brother. He and I were *it.* Each of us had to travel many hundreds of miles and stay in a hotel (at great cost, at a time when we were both young and pretty poor.) Around Day 11, my brother was in the cafeteria . . . when Dad tried to get up, fell, and hit his head. He died from complications about a week later. He died BECAUSE he was left alone. 

Needless to say, I don't leave loved ones alone in hospital/rehab/wherever. Ever. 

When Mom had surgery (4 days in hospital) a few years later, I left all three little kids home with Dad and babysitters for a week. I was with her 24/7 in hospital and for a couple days at home. Period. JUST ME. I didn't leave her alone until she was safely settled in at home. (There was a mix up with her room assignment . . . and they tried to tell me when she was coming out of SX that she couldn't have the private room she'd pre-arranged . . . so I couldn't stay with her overnight. I looked them straight in the face, and clearly told them, "The only way I will leave her is if you have me physically removed. As soon as I am forced to leave, I'll call a lawyer. Try me." Repeated a few times to various staff members . . . Needless to say, John Hopkins found her a damn private room. 

When my 18 year old son broke his leg and had surgery last Spring . . . I was with him 24/7 in hospital for 36 hours. Slept (sort of) in a chair. My presence avoided SEVERAL serious medical errors, including me stopping a nurse from re-administering an antibiotic he'd already had an allergic RXN to during the surgery itself. I realized I am too old for that for more than 24 hr at a time very easily, so next time there is a situation like that, dh will take off work (600-3000/day cost to us, depending on whether we can find a vet to cover for him or we have to close for the day(s)) so he can take turns with me. Period. 

If I couldn't have family there -- we were too old or decrepit to be of use, or dh himself was in hospital and the adult kids not available/willing to assist -- I'd hire competent nurse/caregiver to be there 24/7 to "spell" me. Period. 

Also, FWIW, losing continence is a COMMON problem with elderly folks who get hospitalized/etc. My grandma lost her continence when hospitalized for colon cancer surgery around age 75. She never got it back, and not having your continence is a HUGE issue with elder care. So, that issue is HUGE and totally worth EVERY effort and every dollar to do all you can to avoid. 

[ksr5377]

My mom and both of my sisters are nurses.  They strongly, strongly STRONGLY urge friends and family to never leave someone alone.  They are not able to say that to their patients, but that's what they say to everyone else they know.  It's not that they're not working hard and trying to give amazing care to every patient they have.  It's that every facility is understaffed and skimps on hiring for the bottom line.  My sisters have twice as many patients to care for as my mom did when she first became a nurse.  The care your MIL receives will be of a much higher quality if she has family there.