Hi, caregivers. Does any one have experience with a situation in which both elderly parents are still alive, and one has been diagnosed with Alzheimer's, but the other without dementia is not doing a great job at keeping her safe and healthy? My mother-in-law (91) was diagnosed with Alzheimer's this spring, after my husband and I spent the previous year urging my father-in-law (93) to get her assessed due to what we thought were clear signs of cognitive decline. She's had several falling incidents since then, the most recent of which left her with a collapsed lung and in the hospital for a week. She's now home, but my FIL has been resistant to getting more in-home help than he currently has (20 hours a week from a home health aid). He doesn't have dementia, but he seems unable to keep up, mentally, with the increasing demands her care requires. We hired a geriatric care manager almost a year ago, but FIL has been resistant to her, too.
I can't find much info on what to do when both elderly parents are still alive, and one has dementia, and the other is in charge of care but not doing a good job at it. Would love to hear from anyone who's experienced a similar situation...
I was in pretty much the same situation for the last couple of years. It became more pronounced this year.
I monitored the situation.
I worked with social services to get Mum and her husband (her carer) more help, to which he was incredibly resistant.
I lied - I told him that the hospital wouldn't release Mum unless she had 4 carer visits throughout the day (there was no specific number)
I put ideas out there about measures to take to care for Mum - sometimes it worked, but always sooo slow!
I ensured I was involved with all hospital, doctor and dietician appointments. That became easier as my stepdad became more tired and didn't want to sit in waiting rooms.
I persuaded my stepdad to send me texts, so that I could keep a care diary, but it was really so I could remind him to do essential things if he hadn't texted about Mum drinking her meal replacement shake, or using her inhaler, etc.
Ultimately, it was a balancing act. I felt that Mum would receive better care in a care home, and I could have pushed for that with social services. However, I also knew that Mum wanted to be with her husband.
I realised that neither had long to live, so why upset either of them by removing Mum?
Yes, a care home might have extended her life, but at what cost, and for what point?
I strongly believe in quality of life over quantity.
It was distressing for me, to see that Mum was not getting the level of care I felt she needed, and my stepdad got quite nasty with me whenever I said what I felt was needed. But, I put my mum and what I was sure she wanted first.
So, Mum died at home two months ago. Mum had carers and nurses visiting every day for the last weeks of her life. I was often there until late, to make sure that she was comfortable. Mum died surrounded by love.
If it were me, I'd rather have professional care in a facility that knows how to deal with my needs. My mum wanted her husband.
You have to weigh level of care with quality of life. It's not easy - whatever decisions you make, you will always wonder if they're the right ones. Personally, I don't think there is a definitive right or wrong - we can only do our best in any given moment.
I would have done that for both their sakes.
It worked to a certain extent.
You are not alone in this situation.
I know there are hard working care aides out there. It still is bothersome having strangers in your house, in your way, and disrupting your normal routine. It is intended to allow him to relax and let someone else do the work, but it is hard to sit back and relax when you have people in your house.
Your FIL needs to take the lead on this. If he feels overwhelmed and needs help caring for her, let him come to that decision. You can offer ideas if he is unsure what to do.
What would you have happen? If MIL is placed in a care home, she will still fall, but without her dear husband nearby. How long would she lay there, possibly hurt, before someone comes to check on her? My bet is that your FIL will try and do everything he can to keep his wife at home with him as long as possible.
And I suspect she would have it that way as well.
This helped me get my mother out of her house and in assisted living . Although she was living alone .
If they think Dad can’t care for her, hopefully they will assist in getting the woman placed . Your father in law may also be having some cognitive issues .
My FIL was also struggling to care for his wife with dementia . He turned out to have dementia also.
I kept researching and urging her to try different things during this whole period — assisted living, continuum of care places, aides, visiting nurses, adult daycare, trips out of the house when the aides were there, various suggestions for getting him to eat and drink, clean himself and change his clothes and maintain basic safety. She rejected 95% of them.
When I was tortured with anxiety about what to do, I would sometimes ask myself, five years from now, will I be more upset with myself that I insisted on or did whatever against her wishes, or that I didn’t? That sometimes helped. I did not want to go against her wishes. But at certain points I HAD to draw the line and insist or act. For instance, I did this with hospice. She never fought me when I did. Thank goodness.
I really feel for you and your spouse!!
I feel that we had very similar experiences when trying to ensure that a parent gets the care they need. It takes over your life, doesn't it? And it's exhausting.
I don't want my own daughter to have to deal with that. I want her to have peace of mind.
If she doesn't have a PoA then even her husband does not have legal authority to keep her in an unsafe situation. Your option is to contact APS and report their situation.
There is another strategy where you call 911 and report that she is not herself and may have an untreated UTI. When she hopefully gets to the ER you tell the staff she is an unsafe discharge and then request to talk to a social worker and discuss having her released directly into a facility. Then you have to work out the details of how this will get paid for.
If she is "bad enough" to qualify for LTC (as assessed by her doctor) then Medicaid will cover this if she qualifies financially (and then her SS covers the custodial portion of her care).
My cousins did an "intervention" when their Mom (my Aunt) cleary had ALZ (in her 80s) and her creepy/controlling husband (91) wasn't taking good care of her. They snuck her out of the house and wouldn't return her. They somehow got her into a good facility (and I'm assuming they started by paying for it privately, which I do not recommend you do). Her husband went nuts thinking she was going to "get all his money" and actually fell inside his bank, giving himself a brain trauma from which he never recovered. After he passed away she had access to their money and could afford the MC facility. Don't do an intervention unless you have a solid plan for your MIL's care and how to pay for it, and also are realistic about the reaction of your FIL, which will most likely be profound. Just putting it out there as a "last ditch" option.
Both of my parents were in their later 90's, and my Mom refused to have caregivers in the house. Being that I was a senior citizen myself, I told them I would help with just the logistical side of helping out, no hands-on care.
It was my Mom who needed the help, but Dad was from the old school that the inside of the house was Mom's job, and he never learned how to do cooking, laundry, or housework. Not by not trying, but Mom would shoo us out if we tried to help, it was HER domain. That came back to bite her, both of her serious falls were in the kitchen.
So I had to do what many of us here on the forum had to do, wait for an emergency. The panic phone call that one parent had fallen, a call to 911, hospitalization, rehab, then into skilled nursing facility (or Memory Care). Once Mom was in skilled nursing, Dad sold the house and moved to senior living facility. Whew!!
If your mother is lucky enough to die at home in the care of her own husband, what value is it to place her in care? How much longer would she live due to that care? And for your father, what value to him.
At this old age something will happen. Falls are often the beginning of the end. I think the time to consider placement may be for the survivor when one in this match does die. But my thinking as changed a lot now I am 82. I would do all I could to insure they can stay at home. I would recognize that the end may come, or the beginning of the end, at any moment and I would be accepting--even thankful--of that eventuality for them.
I am sorry. No good answers really. Do what you believe and think is best and what you can best live with for you will be the only lone survivor in this.
I know one lady who was a crossing guard into her 90s,(crossing guard for 48 yrs) still owned her home, did yard work, and drove. She lived to be over 100. It can be done.