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.
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.
She also needs continuity of services. The best chance for that is in the SNF. As things settle in and she stabilizes, you can reassess her ability to return home. Meanwhile, you and your sister can make this as best a place as possible. Frequent visits, bring her favorite dishes (not every day!) and have the food processed for her swallowing. Take her out in the gardens when the weather permits and be loving daughters.
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.
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.
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.
I can understand you want to bring Mom back to her house. To do that, her home would need to be set up as a mini nursing home. Hospital bed. Grab bars in the bathroom, toilet seat grab bars. If Mom is wheelchair bound, then all the doors in the house would need to be wide enough. Yes, she could get physical therapy at home but it isn't the same as being in rehab with the machines that they have available.
Does your employer offer FMLA [Family Medical Leave Act]? Have you worked there full-time for a year? FMLA helps save your job. Usually there isn't any pay unless your employer has AFLAC type insurance for the employees. FMLA is limited to 3 months, then you would need to return to work, or you could lose the job. Plus it would be tough to leave Mom to go back to work.
Let us know what you decide.
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
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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