Should my mom stay in a nursing home or go home with 24/7 care?

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My mom had a stroke and heart attack in February possibly caused by afib. Since then she has been in the hospital several times , in medical rehab, and an rehab facility with the hope of coming home, She has limited mobility and is incontinent sometimes. She came home for a few days with a 24/7 home care agency. She had an undiagnosed UTI, got up confused - fell and broke 4 ribs. The aide did not hear her - since then we purchased an alarm. After the hospital and more rehab, she went back home again with the same agency but they couldn't handle her. We could tell these girls were not experienced. Mom in now on the skilled nursing home side of the rehab facility she was in before. Mom has speech and swallowing issues - has to have thickened liquids and a mechanical diet - grinding up tough meats. She has C diff for the third time and is also on antibiotics for that. I was in charge of dispensing her medications and was in fear of her choking on pills that couldn't be crushed even though they were put in pudding. She needs her blood pressure and heart rate to be monitored twice a day to see if she should take her BP meds or not if numbers are too low. She also has congestive heart failure and takes Lasix for edema. Cognitiviely she is lucid most of the time but sometimes thinking back to the past. The other day another home care agency called to evaluate her - they are more reputable than the one we had before. They said they could handle her and that Visiting Nurses would come in for a while to monitor her condition/INR levels because she's on blood thinner too. They would give her PT,OT and speech therapy were the nursing home will only do speech now. Even though we want her to come home we are concerned whether its the best thing for her. They had to adjust her BP and heart meds the other day because her heart rate is too low. We would only be able to afford to bring her home for a few months and I am willing to take a leave from work so that I wouldn't be too tired to help with the meds,etc. I'd bring her to my house to make it easier on me but with the C diff hate to infect my husband, dog and house. Besides, my mom would rather be in her own home - has OCD and is particular about cleanliness. Do we leave her in the nursing home where she isn't happy or bring her home for a few months of happiness? I know it would be difficult for me and my sister, who agreed to help with the meal preparations, but I hate to leave her there forever like this.

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Sadly, yes. I was erring on the side of generosity, to try to be moderate :(
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CM
That ratio is much closer to one caregiver to 7 or 8 during the day and sometimes as high as 15 to 20 at night
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You've put your finger on it, Katie. Someone right next to her all the time - or, don't leave her unattended with cups of coffee within reach. Such as might well happen in a facility where the lady who pushes the drinks trolley round hasn't been told that the newly arrived patient has a swallowing impairment and isn't even supposed to read the notes.

Facilities are staffed round the clock by people who know how things ought to work. The trouble is that, because they tend to be understaffed by people who are underpaid and overworked, there is almost always a gap between how things ought to work and what actually happens. Sometimes minor mistakes just cause irritation or an eye-roll; but sometimes they're devastating.

I agree that no one can be awake all the time. That's why you need enough in-home support to provide your loved one with a ratio of three caregivers to one person, as opposed to the one to five or so that are common in nursing homes. And it's still exhausting.
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I disagree. Having mom where medical professionals would be right there if mom starts to choke is a huge benefit. Having round the clock supervision was a big issue with my Mom...all she had to do was forget and grab a cup of coffee...someone had to be right next to her all the time

I knew how to mix thickening agent for mom. I knew the routine. But, I could not be awake all the time to ensure her safety. Being in a facility was the only safe answer till she could swallow safely again
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Katie, that's one of the issues that Marg is all too aware of. And the difficulty with it is, that seeing as Marg already knows how to feed and give meds to a person with an impaired swallowing reflex, she's likely to be if anything more patient and more conscientious about it than an aide who has other people to see to.

That was another decider for me: the sight of squash, water and tea that looked like frogspawn because the health care assistants either didn't know how to use the different brands of thickener or were too much under pressure to do it properly.

There is a whole list of things that are part of NH routine but aren't actually that difficult to learn how to do. And once you've learned them, then there comes the question of whether anything is being done for your loved one that can't be done as well or better at home. E.g. using a hoist, preventing pressure sores, avoiding aspiration, giving the right meds at the right time in the right format to the right person (c.f. Golden's current fun and games with her mother, who's in an SNF).

But I think this is how I talked myself into it, and I don't mean to do the same to Marg - Marg, only you know whether the NH is good enough and whether you're sure you could do better and whether it really is going to make enough difference to your mother to be worth the cost to you. There will *be* one.
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67% of those stroke victims that lost the ability to swallow will regain that function in 6 months.

20% never do.

The remainder die from pneumonia caused by aspiration of food or drink.

I think you should keep mom in the nursing home at least until she regains the swallowing functions.
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She is in a nursing home because she needs to be there. You can't run a 24/7 nursing home yourself. Over 40% of those who try end up dying before the person they are caring for. Then who would you mother have?
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Even if you bring mom home, she will be a 24/7 care responsibility to you, no matter HOW many aides you have. That's just the truth. ANd aides will flake on you, no matter how great they are. Are you ready for that possibility? 24/7 nursing, 365 for who knows how long? (And the cost of in home aides FAR outweighs the cost of skilled nursing homes)

We all want what's best for our parents, and sadly, they often cannot see that being in a care facility IS what's best.

We're trying to move mother into some kind of ALF. She is completely resistant, but she's killing my brother each day with her demands and fussing. I had to step away from her care, she was making me so depressed and sick. Brother does not know how to facilitate this, and I am trying to help. She had a chance at 3 day a week aides (which she desperately needs) and said no, not while she's independent. (She is nowhere near independent!)

The last surgery, when we had the chance, we should have simply moved her things to an ALF and let her be angry. But we couldn't reach a majority of "yes" and she went home. Downhill rapidly and now is barely mobile. I believe brother is simply waiting for the inevitable "fall" that will mean a trip to the ER and then he can talk her into moving.

I think she has literally destroyed any chance my brother had at a normal family life--they never vacation, never "play" never go anywhere w/o towing mother and her wheelchair along.

I asked brother if he would do this again and was met with a resounding "NO!!!!!". We didn't agree with it 20 years ago (the whole family) and we don't agree now.

I sound mean, I know, and exhausted. Because I am.
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I am very sorry to say that I think bringing your mother home is most unlikely to make her happy. I am equally sorry that she isn't comfortable in the Nursing Home, but the point is moving her back probably will not make as much noticeable difference to her as you hope. You may, however, feel that the small difference is still worthwhile.

You know that old half-humorous saying "if you want a job done properly, you've got to do it yourself?" Well. This is a case in point.

I know it can be done because I did it. That doesn't mean I would recommend it. I ask myself whether I'd do it again and I just can't answer the question.

There were several weeks of humming and ha-ing about what to do, such as I'm sure you're familiar with. The deciding factors that brought my mother home were 1) continence care and transferring and 2) the rehab's plans to discharge her to an NH I'd never set eyes on. My mother's complex co-morbidities were more or less identical to your mother's, right down to her being sent home from rehab with diarrhoea.

I'm awfully sorry but I'm going to have to stop here. My mother died two years ago - it doesn't seem like it of course - and I'm finding it difficult to itemise the schedule.

You will need a great deal of high quality nursing and home care support, and you will be still be on duty 24/7. You won't get the few months of happiness: what you get is a few months of a white-knuckle ride and certainty that your mother is well cared-for. And some hands-on skills that you might never have guessed you were equal to, I suppose.

It's possible. Don't underestimate what it will demand of you; and set yourself failure criteria in advance - don't be afraid to admit defeat.

One final thought - you're not considering hospice care at home? I should. I think it would give you better, more appropriate medical and nursing support.
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For your sake, at this point keep her in the nursing home where she is getting the care and treatment she needs. Visit often and set up with some family pictures, bring her special foods and meals - share meals and treats with her. You will burn out too quickly with as much care as she is needing right now. Explain to her, right now, she is in the best place for her care - which you all are concerned about - and her goal is to get well so she can go home. Tell her it's one day, one step at a time. wheel her around, meet others, try to go for 'walks' and get sunshine. Place flowers and bird feeders outside her window if possible.
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