Hi. I'm new here. My son's wife's MS care has been provided at home for years but her conditioning is worsening significantly. Three teenage children are not involved with her care. No relatives nearby. Husband , employed, is stretched to where his health is declining. Neither son nor his wife can spend time seeking help so I'm trying to reach out to find where to turn for care for her, respite and financial help for him, intervention to get kids to pitch in.
How are others in their position coping and seeking/finding help?
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Cusz17
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Your encouragement is so appreciated. Their time is devoured just to move forward, which gets harder every week. So I'm the unimpressive, uninformed ombudsman, trolling out here for direction. Like searching through the weeds. Thanks again.
Prayers being offered for you, Cusz17. What a good mother-in-law you are! Also sending a cattle prod for the 3 uninvolved teenagers. Shame on them. 😅 🙏
We were never able to get any help. Make too much money to qualify for any free programs. And too much money for the medical expense deduction to kick in. The only financial help we have ever received is a special rate from our power company. I know my aged FIL had people who showered him once a week through Medicare. At some point I may look into that. But, be careful about going on SSI disability because you get locked in at the age 62 social security rates. This might be okay, depending on your DIL's situation and expected life span, but just be aware. When I worked, I was able to afford some care so that I could go into work 3 days a week and I was allowed to work at home 2 days per week. However, that was really not enough. Working 8-10 hours a day plus commute plus managing the household and doing caregiving in my off hours was too much. We are not rich enough to afford the $140K a year it would take to have a full-time in-home caregiver. I finally had to retire because my health was suffering (both mental and physical) from trying to do it all. The problem now is that respite care is very difficult to find and very expensive ($30 to $45 per hour in our area; the lower end is if you can find someone who doesn't go through an agency). My husband is too disabled to go to a senior day center and wouldn't want to anyway. I find that most caregivers want a full-time job and do not want to come for just one or two weeks while you go on vacation or for just 4 hours once a week, for example. The agencies (where the MS society will direct you) are no help - they never have anyone available because no one can afford to live where we live on part-time caregiver wages. I am considering looking at the physical therapy majors at our local university for help, but haven't tried it yet. I just retired last year and that has been such a relief that I don't really feel the need yet for more help. Maybe it's easier in small towns, but Donna Steigleder lives in a less populated area in Virginia and she also has difficulty finding help (read her blog). I spoke with a neighbor recently whose husband had MS for many years before dying in 2019 and she regrets that her daughter basically had no life in her 20's because she lived at home and spent so much time helping with her dad's caregiving. My husband does not want to burden our children in that way and I tend to agree. That being said, the teens should certainly learn to be self-sufficient and not depend on Dad (if one drives, that can be a big help).
BTW, we have spent tons of money on assistive devices. My favorites are floor to ceiling poles that provided assistance in self-transfers for many years and an adjustable bed that allows for sitting up in bed at night to pee in a urinal. We also put a lift in our minivan for a Pride scooter (much more useful than a wheelchair in a small house) and recently added a Braun Evo chair to the front passenger side. Our latest purchase is a ceiling track system from SureHands (yet to be installed). We found the Hoyer lift to be unusable in our small bathroom.
Thanks much for your long reply. Going down your list of assistives, I realize that we have tried all that - and they worked, at an earlier time, That showed me how much worse it's become and how serious the need for better attention than can be delivered at home, no matter how much love there is. Yet we run into the same obstacles as green244.
i don't have the answer for,i am sorry,but take a deep breathe,1 day at a time,1 hour at a time,and sometimes 1 minute at a time.maybe someone from a local church would donate their assistance,there are the assistance fund, pan foundation and others that may help you with financial difficulties
There are so many of us stuck in the middle financially - not rich enough to afford care, but too rich to get any free services. You pretty much have to go bankrupt to get financial help. I have one friend whose 6'4" over 200 pound husband was just too much for her to handle. They ended up getting divorced so that she could protect half the money and then moved him into a nursing home. The idea is that when his half of the money runs out, he will be on Medicaid. Not a great solution because Medicaid funded nursing homes are not very nice, but sometimes you do have to think of your own needs. It also depends on the state you live in. I read a recent article about a guy in Maryland who made it work because Maryland had some great free services. Here is the link: nytimes.com/2022/01/14/busi...
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