They have POA set up and no heroic directives in place. I am grateful as their daughter for this as well as their financial pieces in place. Here’s what is missing… we never talked about what it really means to ‘stay in your own home’ . It sounds dandy and doable until you’re in the depths of declining physical, emotional and brain health and them desperately trying to hold on to control and independence. My mom’s decline is significant, my dad doing all for both but mom calling the shots. So hard to be a bystander. Neither my sister or I live nearby. I’m not sure if we could have made a further plan, but here we are. The private home helper we’ve waited for to become available is now available. My mother’s pushback and confusion is enough to make moving forward difficult. Do we take control? Do we put our foot down? Do we continue to let things happen as they may??
Who has been here and how did you manage? Thank you.
https://www.mycareprints.com/elderly-products-review/wireless-led-lights
OK I said. What are your options? Dye them? "no" Learn to love em? "no way!" Pluck? "spose so.."
So when you have plucked bald patches from the sides & top of your head, I suppose if you don't like that look you can re-evaluate 😂
(She now dyes her hair).
I see aging, downsizing, needing help, needing help from strangers as a similar process.
My dad needed a sitter while he was in rehab and he loved this lady so much she transitioned to his home when he was discharged.
Dad passed and now almost 2 yrs later mom still has the same part time evening sitter.
We also have a part time morning sitter two days a week. Sister and I take a day or two each week as we can. For now it is perfect.
Many chores are done online like banking, med refills and grocery delivery. Other supplies come via Amazon.
Mom has a visiting physician and we have just started palliative care as another layer of support.
ASL paperwork is done should we need to move her.
the inevitable happenws and they wer both in the hospital at the same rime.
the begged to move to assisted living at that point and have been fone. My Dad passed at the end of September but Mom is stable
Unfortunately this is the way they eventually get the wakeup call when they are stubborn
Unfortunately, if he doesn't initiate a change time/fate will intervene and an event will force a change at no one's convenience.
Is dad showing some cognitive changes himself?
I said...no, I will have to be an adult, be watchful and proactive in assessing my abilities to stay in my home independently when I'm your age. I don't have children or close relatives so that means I'm completely on my own and will have to make an adult decision. If I can't drive etc etc....I won't be living in my own home but will have to move into a more appropriate situation.
Sometimes the truth hurts mother.
If you let things happen as they may, then the decisions get made FOR you by hospitals and rehabs. Elders who are either mentally or physically incompetent are not permitted to live alone or w/o full time caregivers helping them out at home.
Whatever you decide to do, no judgement here. Wishing you the best of luck with trying to do the right thing and getting judged for it, no matter WHAT
When a person feels guilty about something they did, there's a reason.
For me, I believe moving an elder out of their home into a care facility should be last not first. An AL facility is different than an independent senior community. It's one thing to downsize into a smaller place that's easier to get around and maintain. No one is deprived of their liberty in an independent senior community. They are free to live as they wish and come and go as they please. That is not true in an AL facility. I've known and worked for many elders who were coping well enough in their original homes or in independent senior housing with some help coming in who were placed in care facilities against their will. Or seniors who had to go into the hospital for something or who were supposed to be temporarily receiving therapy in a rehab that never went home again and for no other reasons than they were an inconvenience to their family or there was an overly zealous nurse or social worker involved who wanted that company bonus.
Of course many elders do have to go into facility care because their needs cannot be met at home anymore.
I think it's wrong for someone to persuade a family into placing a senior into facility care before even trying the homecare option or live-in caregivers. Sure sometimes it doesn't work out and a care facility is the only other option. Try it anyway though. Everyone's "independent days" are numbered.
I hope I never have a friend like AnnReid. A friend that will persuade my family to deprive me of my home and liberty by dumping my a$$ in a care facility as the first and only care plan.
Your dad is going to have to speak up for himself. He will only be able to make that tough decision if he knows you and your sister back him and will support him in the decision. Take him to look at care options for her or at least look into home health care to take some of the burden off of him. Maybe they come in to bathe her or to watch her for the day so he can get away. If her care is still too much, definitely look at nearby facilities. He can visit her as often as he likes!
Does she pass urine when she is gotten up to the toilet most every time? If yes, ask her MD to work up for UTI, and consider urologist evaluation.
This behavior can be anxiety based - fear of having an accident or smelling bad. Can you sometimes distract her with TLC and diverting her attention to something pleasant?
Sometimes the need to void becomes the words used whenever there is discomfort somewhere in her body. (Like kids have a stomach ache when they are scared.) Is she acting like she is uncomfortable? Does she need to have a BM? Does she need to change position?
Or this just may be the way agitation shows itself in her. A low dose of antidepressant (trazodone and mirtazapine are well tolerated by elders) or a low dose of quetiapine (an antipsychotic and the only one of that class that is supported by research for use in dementia) or a mood stabilizer (such as divalproex) can all help to adjust the brain to decrease the agitation that is driving her behavior.
These meds are not always helpful and antipsychotics have a very bad reputation. Treating agitation in patients with dementia is an art as well as a science..we dont know enough about what is happening in her brain as the disease progresses.
See if there is some way to reduce her distress....at home....partly to prepare for move to a care home setting.
It's a hard job, caring for your partner with this disease. Support groups and social workers can help...ask your MD for referrals.
Take good care .
Many people love the idea of aging in place, but never really assess if they have the resources to make this a reality. If it is only a matter of your mom's care, then you have a couple of options: privately paid aide, home health care aide through an agency, and volunteers of qualified family/friends/members of faith community. Usually the paid staff will need to be paid from your parents resources unless they have long term care insurance (few folks do since it is very expensive). If your father becomes overwhelmed, you can also consider day programs that are usually Monday through Friday during business hours to care for your mom and give your dad a break. Please also consider services that help take tasks off of your father - housecleaning, lawn service, grocery shopping/delivery services...
Nobody will make a plan, or talk about next level of care, etc. So it will be a mess...I don't have much hope that all 4 of us will stay connected to each other very. much after my mother goes....I'm learning to just let go what I can't control, and wait until 'something happens.'
My point is that. you do the best you can, with what you know at the time. You and yours sister have put a lot of thought into the situation...so just see how it goes. The nature of elder care is that the person you are caring for will decline and die, no matter how hard you work or how great the plan or how many resources are in place. Keep in touch with your sister and support each other, without judging(as much as you can.).
I was able (with a lot of help) to figure out the trap we each had walked right into.
DH and I made focused decisions to establish church membership in the city, etc. So our son wasn't stuck in the same trap.
Luckily my father died quickly about 10 years ago.
My mother (and the 2 'successful' siblings) are all fine with me and my sister and our spouses keeping Fay safe and fed at home.
Of course, the idea of more paid help other than a 'friend' 2 days/wk is not even up for discussion. Le sigh.
At least I specifically said years ago that I would not provide housing for aging parents.
"Yes. As long as possible" you reply. Every time. On repeat.
As.long.as.possible.
Once that has sunk in, start discussing what "as long as possible" actually looks like. (Discuss with Dad if Mom has sadly lost some reasoning skills). It's not possible to list every scenario, but the big ones are safety based;
1. Fear. Wandering, delusions.
2. Fire. Kitchen accidents, burnt pots.
3. Falls. Frequent, head strikes, can't get up.
4. Fraud. Getting ripped off.
All these need 24 round the clock care.
Other 2 big ones for caregivers are incontinence & shadowing.
They want to keep control of their journey. But Dad must actually drive now.
Support from the roadside.
Let Dad know he CAN decide to change course at any time. THAT is still keeping control.
As many many others in their heartbreaking tales below tell, staying in your house does not mean you are staying independent.
Of course, it is too late now, but the ideal time to consider what other courses life may take is when everyone is healthy and happy. These discussions need to be rather painfully detailed, specifying exactly what changes in health or cognition would require what specific changes in housing and potential aids, along with considerations of how care will be paid for and what level of care may or may not be provided by family members.
Like most people, my sisters and I sort of did that, but not really. We didn't get into the details, so as Mom deteriorated her definitions of "when it was time" kept changing. So did her notion of being "independent" and "taking care of herself and her home." Basically her last few years were a terrible example of why this painful discussion really needs to take place years before there is any disability. While it is true that the elderly can learn and adapt and manage much better than one may think, there is a time when it is simply not enough. It certainly seems as though your parents have reached that point.
However, as far as "putting your foot down" goes, can you? Do you have a POA or other legal authority? If not, your only possible role is that of an advisor. It sounds as though your father is of sound mind and body. You cannot tell him what he must do and trying to do so will just provoke confrontations. In the case of my sisters and me, we had no authority. Each of us committed to only what we were willing and able to do. Then we went a bit past the original commitment a bit. We tried to work together as a team, even though we had very different perspectives on the situation. Our primary goal was to avoid making the kind of confrontational demands that Mom would have taken as an ultimatum. In the event of anything remotely resembling an ultimatum she would have thrown us out and told us off. Our good intentions would have backfired. There was no way we could have had her declared incompetent and we knew it, so we did the best we could as advisors, offering her simple solutions to her problems. There is absolutely no doubt that her life would have been better in a residential care facility in her final 2 or 3 years, even with the enforced solitude that COVID would have brought. During the shut-downs of 2020 she was probably more solitary trapped in her own home alone than she would have been if she had been in a care facility. At least in a care facility she might have had a nurse or an aide who might have been able to assist her with Facetime or Zoom sessions once in a while. At home she was unwilling even to try.
You may be able to speak with your father, offer him moral support, listen to his worries and stress and then offer some suggestions. Let him know that you do understand that he probably loves his wife as much as ever and wants to care for her as well as possible. Ease into the idea that the best care for her may be only available in the appropriate memory care or skilled nursing facility. All you can do is the best that you can do. Don't get too stressed out about your limitations, that will only make matters worse, make it harder to talk to him. Let him know that you love him and care about him, that you want to help, but don't know what to do. Give him the opportunity to ask for your help in making decisions concerning your Mom's health. I am sorry, but that is probably the best you can do. Discuss your plan with your sister and see if you can agree on an approach. Remember that the two of you will still be sisters in 10 years.
I’m an advisor!!
The first two months have been very difficult a transition but now getting used to new place. Excellent place with 24/7 help, emergency call system, activities, wonderful meals etc...
My brother lives in town and I live 200 miles away.
We do not have any financial POA but they have allowed me to step in and it's been a surprise as they were adamant about staying in house until mom was severely injured. Dad now knows it is for her best interest to be there. But it took some serious talks about doing what was best for mom....
Even with dementia, he finally gets it. Seeing her physically struggle every day has cemented the need for them to stay in AL. Dad has begun to fall and lose balance so even more reason to keep them in a safe environment.
You will have to decide these things as it happens in your circumstances. But you sound living and concerned so your good heart and loving protectiveness will win out I'm sure.
God bless
Your story is hearbreaking to hear. I'm so sorry that you had to give up your freedom and your way of life for no other reason than becoming handicapped.
You should not be with people that have dementia. I can't even imagine what a nightmare that must be like. Are there any other residents at your AL who are still with it mentally and don't have dementia? I hope there are for your sake.
You recognize this is coming and burying your heads in the sand isn't going to help; it will come to crisis. At the least sit with your Sister and make a plan for her for when the crisis hits, when you meet with the call from hospital as I did with my brother, or when you visit and find chaos.
This is so difficult. You are on the cusp of what decisions you have coming. You say that they 'Want to stay in their home'. We ALL want that. That isn't the question. The question is, CAN THEY.
I think you need to be clear in your own heads what you and your sis can/are willing to do in disruption of your own life. Go over the "what if" screnarios together first. I wish you luck. You see the train coming. And you are right to be concerned.
thank you your response hit it all
How did you “force” her - ? Did you have Conservatorship?
This is so true. I had these discussion with mom, we are assuming our parents will have the memory of the discussion, and the ability to think clearly.
When I get older and have that discussion with my love ones, I will need to work out a metric (doctor's rpt, skill test, etc.) for determining my move to AL. I will also video of this discussion. This should help my loves in dealing with me.
Once she realized she was struggling to handle the 'dailies'--she and her daughter checked several places and luckily for her, she could afford a really nice all-inclusive place. She has pushed herself to make friends, attend activities and take advantage of the free bus rides to various activities outside the ALF.
WHAT an amazing example she's been!! She has not harangued her kids with demands nor made grand pronouncements about how she can live alone and nobody better try to stop her! She gracefully accepted aging and while I KNOW she would love to have stayed in her home to the end, she made the choice that is safer, better and more thoughtful for her LO's.
Her kids were helpful to her---but she was adamant that she be independent and so the move was made on her decision alone.
Because she HAS made this choice on her own, she is happy with it, people go to see her constantly and she is as happy as she has always been.
To me, this shows such a level of thoughtfulness towards her family and her neighbors--b/c we did worry about her!
People who swear that they will NEVER leave their homes often wind up in places they really don't want to be, due to falls, lack of good decision making, you name it. If they had chosen a better path years prior, they likely would have had a better QOL. I'm thinking of my MIL who is now 100% housebound. She will not leave her house for ANYTHING and hasn't since Thanskgiving. It's heartbreaking, but she is insistent. So we sit and wait for that middle of the night call that she's fallen...again.
I have already made some changes to make my sons' lives easier. For one, I adapted to carrying a cell phone (hard change to make) so that they know I can call or they can call me if needed. I have already hired a yardman and housekeeping help, whose responsibilities will probably increase as I age. Right now they provide a few hours per month. That will escalate if needed. The really big deal is finding the right persons for the job. We all thought that would be easier now than later. My sisters and I have also written letters to our future selves concerning what changes should indicate giving up our homes. I just hope we listen to ourselves.