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.
My parents have some money and planning in place....except what the plan was when they were unable to care for their home 1300 sqft..plus equal basement and 3 acres of lawn mowing and 100 ft of flower beds. Oh and no longer being able to drive from their rural town 50 miles round trip to doctors etc. Small details. They were aware that I was divorcing TWO years prior to the event and I would need to work to support myself.
I guess their plan was me although they never even bothered to mention it. Dad passed four years ago and mom, the sicker of the two, cannot drive and (of course) can't mow the lawn. We are managing but only because I have to set aside my plans completely to make it work.
If they've made it clear that they are staying...then they need to have a clear plan that they can articulate to do this. "We have money" is not adequate because you cannot hire everything done unless you have ALOT of money. You and your sister then need to draw up your boundaries and explain the limits of your abilities. If they are unable at that point to "maintain", you cannot rescue and they will have to do something else.
For instance, my hard boundary is moving someone who cannot adequate shower, dress, get out of bed, change diapers etc. I physically cannot do these things, period. I can clean, assist with meals, shop, drive, mow and even change the oil in the tractor....but I will not do that type of physical care. My mother and I are having the conversation right now....she is home recovering from a broken hip at 85, If she cannot get independent to a certain level...she will be doing something else. I cannot fill in every single gap.
Its presumptuous for parents to assume children are able to just step in to that level....and without asking or discussing.
If mom has dementia, she should not be driving the bus.
Can you talk to Dad separately and get agreement that something needs to change? Because chances are good that HE will burn out, fall ill or die before mom without help in the home or a change in living arrangements.
What would happen if you and dad found a wonderful AL and planned a move, not telling her about it beforehand?
What happens when help comes in FOR DAD?
Sadly, if she is stubbornly resistant to change, you do have to wait for "the event" which will take away their choices.
Explained that way to dad ("you have have your choice of places now, or the decision will be made for you, by strangers in a hospital"), would he be empowered to take action?
I would leave mom out of the conversation entirely. You can't reason with dementia.
In my experience, you can sometimes "put your foot down" IF your parent trusts that you have their best interests at heart. Thank God, my mom trusted us enough that when we told her it was time to move, she didn't put up (much) of a fuss. Not so with Aunts and Uncles. Non-demented parent died first in both cases. Very sad.
We saw minor bumps and bangs on her cherished car, and I convinced myself that it wasn’t serious, but quite soon after we began receiving calls asking for “little”helps (ran out of coffee, 17 cans of string beans, can’t find her dentist’s office in the small town where she’d lived and worked her whole life, then the falls and bumps to herself, and ultimately, the fear of being by herself in the big old family home). But “You both have your own families and responsibilities and I don’t want you being involved in anything more because of me…..” And of course, we already were.
So we tried what was referred to as “a week in assisted living”, and learned, almost immediately upon her entry there, that her confusion was at least in the moderate range of dementia. So her independent days were numbered, even before we picked up on any signs…..
I was a major mover for the assisted living trial, and I felt like a guilty assassin as the one who stole her freedom, her independence, her life. In a matter of months, I realized that I’d been her hero.
Until the pandemic, her life there was a place of comfort and peace. She then suffered two separate COVID infections, and absent from the only family she had surviving, AND the expected ravages of her age as well, she’s now in hospice care.
I’ve made peace with my sad role in this, and you will have to do the same.
SAFETY for both of your parents has to be considered first, then comfort and consistency (impossible during COVID). Hard hard choices, and as Barb has so concisely stated, unless you assume responsibility for the choices, some else ultimately will.
Ever heard the saying, "With friends like that who needs enemies?"
No chance anyone was willing to try an alternatives to an AL facility for your friend a retired bank president and professional woman? Like maybe a live-in caregiver so she could remain in her home. Live-in help also takes the person out. Understandable that when Covid struck people became isolated. People still went for drives. They still visited with friends and family in small mumbers. A person in a care facility got none of that during Covid.
It's good that you've made peace with yourself about feeling like a guilty assassin. You weren't wrong to feel that way though.
At the beginning of all this drama, their family physician advised to move them into a living situation that could provide all levels of care all the way to the end of life. And by end of life, the situation should provide all the medications and medical care needed for the worst situations. Many care facilities who advertise "end of life care" are not accredited to administer certain types of drugs, especially psychoactive drugs. We wish we had followed the physician's advice from the beginning because each change in their care level, and especially the 2 moves across town, was extremely stressful.
I wish I could say we are wiser as we are currently trying to care for my own 91 year old dad who has progressing dementia (he lives alone in a house, with some help, 30 minutes away). But, we are fumbling our way along, living from crisis to crisis once again. I am constantly stressed. So if I could go back and advise myself 6 years ago when we moved my dad to be near by, I'd say "Find a nice living situation that can provide step wise increases in care all the way to the end...". And then, if I'd only listen to myself!
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.
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!!
Take your dad to visit some nice places (without your mom). His generation remembers some very nasty NHs so he needs to see the reality of places that have activities, events, transportation and distractions (for your mom) so he can picture himself regaining some of his former independence from her.
I think the argument that circumstances will eventually dictate where they go and when is a rational one, and it may help to have him read some of the posts on this forum by adult children who are struggling to provide realistic care for their resistant parents. The caregiving arrangement must work for both parties: the receivers AND the givers, otherwise it is not working. It cannot be onerous to you, ever, or you will burnout (or even become ill from the stress) and then where will that leave your parents? He needs help seeing that you're not giving him the bum's rush into a warehouse for old people but giving him power in choices of his own making and timing.
Don't be discouraged if he brushes off your first or even second attempt to broach this subject. He needs to bring his thinking around and it will be slow after a lifetime of entertaining a faulty vision of how he thought it would go.
Also, to stay in their home they will need scads of money -- when even 1 person needs 24/7 care (and some of it may be medical) it will exceed the cost of AL, MC or LTC. Plus, hiring aids privately makes them an employer in the eyes of the IRS (in many states so check theirs) AND will require a lot of your time managing schedules, even if you work through an agency.
I think you should also be honest about just how much time you wish to devote to keeping them in their home, as it can be substantial -- especially 2 people.
Lots to ponder. I think having him read some of the posts on this forum will be potent, as he can't deny the testimony of another, if he is a reasonable man (and he's getting worn out by your mom). I bet he never envisioned "losing" his wife to dementia for many years, either. I wish you much success in moving him towards a workable solution for everyone!
Let me tell you there has never been an elderly person who didn't make it clear that they're staying in their home as they age. So you're not alone. No elder goes willingly into a care facility and most won't even discuss with their family the possibility that they might have to go into one. That's when you just do what has to be done.
If your father still has his wits about him then deal with him, not your mother with dementia. Let him know that he cannot allow her to make decisions anymore because she's incompetent with dementia, and that if he doesn't take some kind of control in the home you and your sister will have her put into facility care. Your father needs to know what things like APS are. He has to understand that if there's refusal to accept outside homecare help the situation at home will get bad. Then social workers and nurses come and they both get put into a care facility whether they agree to it or not.
I've seen this happen many times in all the years I worked elderly homecare. Seniors who were coping well enough in their homes and had both homecare aides and family help who got "placed" by court order on the recommendation of some over-zealous social worker or visiting nurse who wants that company bonus, and gets it when they can place someone. I've seen how a home safety assessment gets done. If there's a step somewhere without a railing or a narrow doorway, the house is deemed unsafe for the elder and they get placed. Then their house and assets get liquidated. Then Medicaid gets the bill. Yes, it's a racket. The nursing home, memory care, AL, and even homecare is such a rich and powerful industry that they pretty much make their own laws. This is why seniors before they're elderly really need to understand that being "stubborn" about not accepting help, and families who obey incompetent seniors to prevent fights will result in exactly what I'm talking about.
Please show this post to your father. The person writing it has been in senior homecare for almost 25 years and have seen just this happen to many elderly individuals and couples alike. He can't let mom with dementia decide anything anymore.
Can't. The OP's Father is competent to make his own decisions.
"If your father still has his wits about him then deal with him, not your mother with dementia". Agree
"He has to understand that if there's refusal to accept outside homecare help the situation at home will get bad".
Also agree. But.. TELLING people seldom works. The man must GET this himself in order to change his own attitude. Hopefully he does.