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Has anyone had experience caring for a loved one at home who is paralyzed on one side and generally weak although mentally alert?
Two and half months after a paralyzing stroke, it's clear Mom isn't going to be able to get herself into and out of a wheelchair. Her independent personality (sounds like a cliche, but she really hates having people pay attention to her at all) does not fit with institutionalized LTC. She always said she had a good life and is ready for whatever, so I know she has no desire to live anything less than a life that included family and her beloved outdoors. It is tempting to let her pass silently but because she would be so missed, the family isn't ready to let her go. Problem is home care would involve the kind of lift that you need to put the patient on a sling to get in and out of the wheelchair, and this requires two persons. We live in a semi-remote area - a half hour from any small city where one normally can hire home care and they can ride busses to get here. The family consists of Mom and Dad in early 80s, 5 healthy kids, only two of which are able to spend any time at all at home, and one who lives at home but is partially disabled as well. Medicaid might cover home care during the day, but since two people are required to get Mom in and out of bed, is there any hope that this kind of home care is possible? I could move in myself, but it sounds like I couldn't do it by myself. I might need to work during the day if I lived there. Please share your experiences.

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I saw a piece of equipment once that helps people out of wheelchairs. Check with your local Lion's Club. I don't know if it takes two people to operate. Maybe your options would open up if you could find something to work with a single caregiver??
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Genealgal1: I'm thinking maybe it's so much work that she may not want to hang around for much longer, and she's so frail, the option might arise in the form of a new problem... problems seems to be exponential as they increase. For this reason, I am looking into hospice care AT HOME. Not sure, but there seem to be more support for that and the FEELING of it seems to be closer to what we want than LTC. We don't want 'long term care,' we want 'in the loving bosom of the family - even if it's only a few months.
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I have had several people tell me that Hospice was the best gift they gave their loved one and the entire family. Best wishes!
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Is your mother eligible for hospice? It is wonderful in many ways, but I don't know that it would solve your caregiving needs.
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Tonight she was quite vacant mentally and aware of it! Aware she wasn't able to carry on a conversation, and could just listen to music, and wanted someone to be with her. Of course you can't do that in a nursing home, and I hate to leave her alone all night etc. We wanted to give her several months to see if she got better but it's been two now, and she develops more problems. So rather than have her live half a life, as the family all agree she wouldn't want that, we are going to let nature take its course - gently - while we allow her to prepare - and us. Kind of a like a terminal cancer patient. I'm thinking hospice will allow massage and mental therapy, which standard long term care won't. Also I don't know yet what the 'terminal' requirement means. I know it means less than six months, but how strong the probability is one thing I will be researching. I will need someone to help me with the bed pan etc. and to help her get used to the idea of dying. She's often said she's ready, but the reality may be different. I can let you know what I find out.
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There is a piece of equipment called a Hoyer Lift. I'm pretty sure it can be operated with one person. Local organizations may have them available on loan (try the specific medical issue related groups (a stroke related support group, ALS/MDA , MS, etc).

The new definition of eligibility for hospice is 'failure to thrive'. The 6 month rule is not typically the deciding factor anymore. (at least for the hospices near me). People go on and off hospice now. If a hospice group feels the person has stabilized they may release them from hospice. In the future, if the patient needs it, they go back on. Ask a doctor to write a script for a hospice evaluation and let hospice tell you yes or no. If you have several providers of hospice services in your area, call each of them and ask what services they provide. Then ask the one with the best match of services offered to your needs to do the assessment.

If you can provide transportation and find a suitable caregiver, you might consider bringing someone out for a few days a week. For instance you could pick them on on Monday and bring them home on Wednesday. They would need a cot of bed but they might give you relief to take care of yourselves. Good luck.
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Thank you, very helpful. Hoyer lift is what they use where she is now and they say it takes two, but I will double check. Problem that I foresee is bedpan duty, seriously. I think she could even stay in bed most of the time, but seriously I see cleaning up for the toilet that she can't get to as the most practical issue and I would want professional help for at home. I will see if there are hospice near me. Best would be a home designed just for this, I've heard of these, but mostly I believe they are for ambulatory patients, not bed ridden ones. Peace and thanks.
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Very few Hospice patients are ambulatory.
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To my knowledge,most hospice care is provided 'in home'. Hospice beds (in my area) are used for situations where the patient needs an extraordinary amount of care.

Pull ups (adult diapers) may help on the bathroom scene. And an experienced nurse would be able to train you in rolling your Mom to get her on a bedpan. If you don't have a hospital bed, get one (through medicare) and it will make your body mechanics easier. Bed goes up and down so you aren't bending over and the bed can be positioned for the comfort of your mom.

There is a you tube demo on the hoyer lift. And I just googled hospice for your town and came up with some names of who serves your area. Of course, that list may not be quite right with the distances involved but it is a starting place. Keep us posted.
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Waited too long for hospice. Should have called them long before they were needed. The word itself brings up an image of AIDS or cancer patients riddled with sores and such. When we finally moved, they were ready to roll on a dime! But Mom died two days before we were going to have the house ready for her. I think we should have brought her home right away. At the first mention of the word hospice. Thanks for all your help and support. I'll still be on here.... Dad has many health problems and you'll be seeing many strange questions from me! Love to all you caregivers and carers in general!
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ruralwannabe, I am so sorry for your loss.

Hospice is a truly amazing and remarkable service. My husband was on hospice for about 5 weeks before he died. I endorse your observation that calling them in sooner is better than waiting until the last minute. You'll know that when Dad's time comes. Maybe through us others will be less hesitant to make that call early enough.
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So sorry to hear the news, 'rural'. Sending hugs and good wishes.
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I've been taking care of my mother by myself for almost 6 years she is paralyzed on her left side some times I cry and beg her to let me go to sleep after the 3rd day she finally went to sleep best 4 hour sleep I think I ever had and no there is no relef mother makes to much for medicaid and doesn't have the 15 dollars an hour required for to much of a break to even count the lifting is what is getting me and I'm almost 50 thank you Jesus for giving me a strong back my advice just don't think about it when they are throwing a fit or what ever just think about how much you will miss them if they were gone and enjoy them good with the bad what else can you do PS our hallway reminds me of the shining lol she calls me every 5 min and if you know someone in the killeen area that would cook for us my cooking sucks but we service I try to do fun things around the house that I like since I don't leave to often
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If she "makes too much for Medicaid" you go to an eldercare attorney and have a Miller Trust created to pool her excess income.
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