My mother has been caring for my stepfather for over twenty years after his stroke in 1999. In addition to the stroke making him non-verbal and wheelchair bound, he has begun to lose his hearing and has behavioral issues that recently have become a little violent (he grabbed her by her shirt and would not let go a couple of times now). His mental state appears to be on the decline as well as he will forget things easily or not seem to be entirely aware of what is going on.
My mom herself is 79 and is in good health and could still enjoy an active & independent lifestyle if she weren't constantly tethered to the home and my stepfather's care. If she could, she would like to stay in her home as long as possible. However, getting my stepfather in and out of bed is becoming more difficult, and he has pains that wake him at night, which wakes her, so she is also exhausted.
So I have been trying to figure out our options and, once identified, figure out the price tag. Fortunately, I have three brothers and I believe they would all be willing to kick in some funds to help pay within reason. Taking them into any of our homes is not really feasible – my brothers all live out of state (my folks definitely want to stay in Arizona) and my home is a walk-up brownstone that is not a feasible living space for my stepfather. Plus I work and he needs someone there during the day.
Ideally, my mother would like to put my stepfather in a nice assisted living facility while she is able to stay in the house and come see him daily and maybe travel once in a while. That way younger, capable professionals can do the heavy lifting and she can get some much needed rest and live life. Not surprisingly, he is not really keen on that idea. I think he has it in his head that she would leave him there and forget him. He would have to be declared incompetent for my mom to force the issue, which the psychiatrists have been reluctant to do so far (though it has been a few years since he went to one, I believe).
Alternatively, they could hire a round-the-clock in-home care giver. I have no idea how much that would cost – a lot, I am sure – and that wouldn’t really solve the middle of the night needs if my folks still sleep in the same bed. And honestly, I don’t think my mom would love that idea anyway, but we haven’t yet had an in depth discussion about it (this post is part of my prep for that conversation).
Personally, I think the best solution would be for them both to go to an assisted living or independent living facility, if my mom would be willing. I have seen places that have both options available. However, my mom needs the independent living and my stepdad needs the assisted living. It is probably a conversation to have with the facility itself, but can anyone shed some light on how different these two options are and which would be best for my parents?
Thank you for any advice!
This would allow them to stay together if they choose and if not, it is a cheaper care alternative to big facilities.
Instead of presenting this as a choice to SD your mom should present it as a fact. We are moving and that is that. She can stay with him or go home, her choice.
Have his doctor prescribe something to calm him down. The aggression can be a problem in any facility, so it is best to get that dealt with before any move.
Maricopa county counsel on aging can help you find the resources available for aid and finding a facility that meets the need.
Best of luck getting this dealt with so your mom doesn't become a statistic. 40% of caregivers die before the person they are caring for, maybe he can comprehend that and hopefully he loves her enough to get professional help.
Does your stepfather not have any concerned family members on his own side? Is he alone in the world apart from his wife's connections?
There are Care communities that you start out in Independent living. working into AL and the LTC. One spouse can live in IL the other in AL or LTC.
Before you make any decisions you may want to protect Moms part of the marital assets. Medicaid allows that. Then SDads half (or whatever) is spent down leaving Mom as a Community Spouse and able to stay in her home and pay her bills. Just my opinion, but Sdad maybe better in a ice LTC facility with all his problems.
Find an elder lawyer near you who is well versed in the Medicaid laws for your State and consult with him.
Does your stepfather have a diagnosis? His aggressiveness, dementia (as listed in your profile) and immobility may mean he needs much more care than an AL. States vary according to what they allow in an AL, but, unless it's a Memory Care facility, I'd wonder if he would need a higher level of care than a regular AL. Having low mobility, dementia and blind..... Also, your mother continuing to care for him, under the circumstances......would concern me. Caregivers sometimes die before the person they are caring for dies. It's very stressful and exhausting. She may downplay this, but, it's far too much for one one person to do around the clock, especially someone in her age range.
Are you able to discuss things with your stepfather's doctor? I'd likely explore getting a professional assessment. This would determine what level of care he needs, such as nursing home or Memory care. A representative at a facility may be able to assist with this as well.
Covid makes this so much more difficult, but, it sounds like your father's care is very challenging about now. I hope you can find some help for them. I bet you'll get some more responses and ideas as well.
I have heard of couples having 2 small apartments in same complex-one assisted one memory care-that would involve big bucks unless you got a studio size for each-might be less than a full size apartment in memory care.....Now my parents have 24 hour home care is also big big bucks but mom can not physically care for dad-bathing, med management etc. Mom has some problems too but not as complicated as dad. Having people in their house all day every day is also making my mom a little-lot crazy as most of the time care givers are messing on the phone in between pill time, meal time, bath time......care provided by agency has been spotty at best-not consistent care, leaving dad unattended in the bath tub, on the toilet and he fell.
Nothing, i mean nothing is going to be perfect care all day every day-while knowing 24 hour care provided by one family member is nearly impossible. Some posters have done 24 hour care at a huge emotional and financial cost to their own lives, family, sanity.
I looked into adult day camp for my sister along with bringing her here to my house-transportation was provided to and from-might be something available in your area as a temporary measure until a more permanent solution can be found. At the last minute we got a call from a community that seems to be doing a good job at working with sis -she finally is in a good place and we all have some peace of mind
You need to consult a doctor about your father's night pains. Seems he needs a better medication plan that addresses his evening pain. I know your mom wants to be there for your father, but she may need to sleep in another room to get enough rest for herself. If she had a caregiver, home health aide, or sitter - they would be up to take care of your father's needs while your mother rests.
If your father is not expected to survive this cancer journey, please consider hospice care. It is usually covered by insurance.
"Are you able to discuss things with your stepfather's doctor? I'd likely explore getting a professional assessment. This would determine what level of care he needs, such as nursing home or Memory care."
I agree. If his care needs are past IL & AL already (or borderline) - best to find this out early. If so, an 'aging-in-place' type may work? Where he has MC/SNH room & Mom has an IL unit. They can spend the day together, meals together & if they like, sleepovers too but she can be relieved of the heavy work & socialise too.
I would love this set-up for my folks. Still together-ish but much less burden.
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