My sister and I live in the same town. Both married, dual working parents, kids in high school and middle school. We are stretched incredibly thin as it is.
My parents live in a different town, and my dad's dementia has progressed to a point where day-to-day life has become challenging for my mom, as he's a very difficult personality (prideful and quick to anger) and is losing his ability to do things independently. His memory care team has been aggressively encouraging them to pursue a move up here.
In the time that my sister and I have lived here, my parents trips up here have been relatively sparse and short, particularly given that they have 2 sets of grandkids up here. Which is fine, they can live their lives how they want. I don't resent it at all. It does seem like terrible advice to be pushing someone with moderate dementia to move somewhere where they clearly have never been comfortable.
My sister and I have pretty much drawn a line that they would need to move into a retirement or continuing care here (or really anywhere) as a next move - because of all of the baked in support that you get in these communities. It would give her instant comradery with other people in the same scenario and room to breathe a bit. Financially it is very doable for my parents.
But my mom keeps insisting on moving to an apartment or house here, because they find the senior living options too depressing. They are in their late 70s but feel "too young" when they look at continuing care residents.
Given our other life constraints, there is no way that my sister and I can provide the level of support to offset what we think could be a much more difficult situation for my mom.
We keep going through this cycle where my mom sort of hits a bottom and then tries to dig out of it by half-heartedly pursuing the move here. And then it results in a mini fight with me and my sister. I feel like a jerk, but moving a dementia patient to a new town that he seems to dislike just seems like the terrible decision.
I know my opinion is clouded by what benefits me personally, so I just want to know - are we bad people? Should we be offering more support to my mom?
Thank you!
Best of luck to you.
Here's the thing: There are no great options.
Long-term-care facilities have 24/7 staff, but the CARE is NOT 24/7. My parents were in a high end continuing care community. I spent 5+ years (on average 8 hours/day every day) in the "care center" taking care of and advocating for my severely limited mother. Why? Because "care" = institutionalized neglect. This is not to dis the aides, many were fine. But there was insufficient staff to care for residents properly (e.g. if you think changing "briefs" should be done more often than every 5 or 8 hours; if you think residents who cannot care for themselves should be taken outside once in a while - like once a week? In this particular facility, residents who needed assistance to go outside and could not advocate for themselves, might get outside one a year (no, I am not kidding.)) Residents were bored. Residents in an assisted living facility (where I currently visit a friend each week) are bored. I could write a book.
As for the lack of 24/7 care -- one evening I heard a woman in the "care center's" assisted living unit yelling. Not a staff member was in sight; I don't believe any staff member was on the same floor of the unit. I checked on the resident (contrary to what the Administrator would want) and found the resident sprawled on the floor. Turns out she had broken her neck. She ended up in the hospital and then spent the rest of her days in the noisy skilled nursing side in a shared room.
The other thing about long-term-care facilities: You have no control over the care workers. When you are in a home outside a facility, you can manage, hire, fire, build relationships, and train the care providers. In a facility, "management" does that and good luck with that.
I hope you figure out the best solution. None will be perfect.
My father was getting discharged after prostate surgery and my teen daughter and I went to pick him up. The nurse came in to show him how to empty the catheter bag so I excused myself and daughter while she did that. She looked at me and asked me where I thought I was going. She needed to show me how to empty the bag. I bluntly replied "Oh no you don't" and walked out of the room. I was a government accountant, not someone who was used to dealing in bodily fluids during the course of their workday.
SW try to lighten their load by getting family involved. This SW is not looking out of the box that it is not up to the children to make sure everything is done for Mom and Dad the way they want. Its up to Mom and Dad to make their childrens lives easier so they can be there to help when they can. So u tell these SWs this is how it needs to be. You all have families and jobs so very little time to help Mom and Dad. An apartment and a house is not in the picture unless Mom hires people to care for Dad and do the work to upkeep a house. If they move near you its to an AL where MOM is there to help with Dad but can join in activities and know that he is looked after while she participates. There will be no independent living because you are not able to help. You DH and children take priority. Your parents have options and need to take them. They cannot rely on their children.
Seems you and Sister are on the same page so stand by your guns. Its no longer what your parents want, but what they need. They really can do whatever they want if they want to pay someone but they cannot expect you and sister to fill in the blanks. You just do not have the time. If you owe anyone, its your husbands and your children.
Anyway, thank you - yes, I am belated realizing that the SW is not approaching this from a constructive or helpful angle. Very frustrating.
Does mom seem less coherent in the evenings?
Sundowning? Alcohol use?
Guilt, as someone else posted is such a useless emotion. Grief, sadness, regret that their getting old and are unwell.
But you didn't cause this to happen.
But yes to drawing your lines. It is REASONABLE to not support magical thinking, not enable unsustainable situations, not provide servitude.
They are the hard lines.
To take a softer approach, gently steer Mom to counseling.
This is a MAJOR life change for them both. It is OK she is scared, unsure, upset & angry. It may take a few sessions of talking it all through with a non-family person to gain insight. (A Councellor or Social Worker that works with life transitions or even specialises in elder issues if possible). For Mom to start working out what she actually wants (this is a big one). Is it to stay the same? Stay in her home? Not be old? For Dad to not have dementia? Feel angry & deal with the LOSS of all that. Then start making decisions about what she wants that is ACHIEVABLE. To look forward at what is POSSIBLE.
Support that process.
Turning up to keep her life stuck where she is just delays the process.
It is much better both for the supporting family and the LOs to have the supporting family close. The LOs will function better with visits from the family and the caregivers at the community will pay more attention. Win/win.
Yes it will take lots of adjustment and accommodation to begin with as they continue to age, the difficulty of helping them from afar will just increase. The difficulty of moving them into their own place and then possibly moving them to assisted living in their own town and then making the decision to move closer to you would be massive work. Please think very carefully about the best solution for all of you, not what they "want" but what they and you need for the best care for all of you.
You did not make them grow old.
You did not cause your father’s dementia.
You are not responsible for solving their problems brought on by their aging and dementia.
A familiar alarm bell in your post: My mother (98), who is in an advanced stage of dementia, refused to associate with “old” people at seniors’ centres, and now her care home, even though she was likely the oldest person there. This detachment from her own realty was one of the first signs of her cognitive decline. Your mother is refusing options that would make things easier for herself. Poor judgement. “Too depressing” likely refers to her own disappointment at facing her reality.
Senior living in your town or NO move.
I’d suggest that you and your sister, and perhaps both husbands, agree on a short statement of your own position, send it M. AND ALSO send it direct to the ‘memory care team’.
I have no more left for my family in terms of what is "owed". Been there. What I have found in truly accepting my plight in all of this, is that I cannot and will not control anyone's outcome by becoming a director and producer in the shit show I'm currently watching. I changed that channel long ago. I only step in when it concerns the need for compassion and dignity.
I've done, and continue to do, what I've been doing for decades. And as long as she's safe, fed, and relatively happy, I'm good. I do not feel as though my family or anyone else "owes" me, nor I them, because I have formed my own guidelines for living and breathing through all of it. There are parts of my family that get angry at me for doing what I NEED TO DO in my own time and in my own space with it, and for that, they can lose all of the sleep over it, if that's what they deem for themselves. For me, I sleep just fine. I cannot care for those who do not care about me. If you feel as though you give your mother enough support, then I say you really need to sit with that and have a conversation with her on the needs you have. Again , it seems as though you're a person who has been manipulated and motivated by guilt your who life...And I don't truly know if that's what has happened, but the bottom line is that you are no good to your mother if you're not ok FIRST.
I told my own mother today, "I love you but I cannot run up here everytime you want me to, due to scheduling/work. And she seems to understand, but there have been times that she tries to throw some guilt my way. Other extended parts of my family b***h every chance they get because they feel I should do things their way. I'm the one with the tasks - I do what I need to do. I'm there 2 days a week with outside treats and surprises, and she gets her outings when possible. I cannot do anymore than what I have and I won't. I'm worn out and I have my own life outside of hers and my fam. I advise you to think about what's best for all involved - not what is "owed" to you/them/anyone else. That may help you.
My mother is safe, fed, and relatively happy. THAT is what is best for all.
You too need to get across to Mom that you don't have the time to help. A House! Who does she think is going to mow the lawn? Upkeep the house.
I think Mom would be better staying where she is and place Dad.
Do not help your parents with any research or touring of any apartments or houses . or help her move . If Mom wants to move she will have to figure it all out on her own . If she thinks she is independent , then she can do this on her own including movers to pack and move her things . If Mom pulls it off then she keeps living on her own for now .
A wise social worker told me “ don’t help them , let them fail “ , to show them they can not live independently .
If Mom asks for help researching , touring and moving into an assisted living facility with a step to memory care , that I would help with .
So I made it perfectly clear to them that I'd be doing no hands on caregiving, that they'd be moving into Independent Living at first, and then Assisted Living if necessary, etc. They were agreeable to that bc dad couldn't drive anymore. I found them a 980sf apartment in an Independent Living senior high rise 5 miles away, and they loved living there for 3.5 years. What's the difference what city they're in when living in Senior living?? Mom considered herself young and yada yada, but she was on the dementia highway already! Dad had a brain tumor we were unaware of, so moving them close by was the right decision.
Dad fell and broke his hip and I had to get them both into Assisted Living after 3.5 years. Again, close by so I could furnish the apt in AL and donate their surplus items from the IL apt. Then dad died and mom eventually wound up in Memory Care Assisted Living. I managed their lives for them w/o giving up my life in the process.
One way or another, dementia is a horrible progressive disease that mom may have no other choice but to place your father eventually. If they move close by to you, you and your sister can help mom GET him placed when the time comes. I'd encourage her to get an apartment for them in Independent Living first so some meals and activities are available IF she wants them. That will get her used to senior living and start the ball rolling, like I did with my folks. Make it clear you do not support her getting a home or a regular apartment bc as dad's needs increase, so will HER needs for less responsibilities in general to worry about. She can hire in home caregivers when needed also. Those resources are readily available in Senior Living places. Set them up to flourish, not fail.
I don't see how you and your sister can stay completely uninvolved in your parents lives, or if that's what your goal even is. But this is my advice to be able to help them on YOUR terms. If mom refuses, then good luck to her managing all this chaos on her own. I guarantee you there WILL come a time when she's frazzled and at the end of her rope not knowing how to handle dad's dementia or WHAT to do in general. She's better off making a rational decision now than a last ditch effort at the 11th hour.
Was your mom the type who always went with what your father said? That might be the first problem, she doesn't know how to tell him that things have to change.
Can either of you go their area and take your mother on tours of independent living places? Let her see they aren't the horrible places she has imagined. If they never had an interest in visiting your area, moving closer to you would be a mistake.
Let your mom make some hard choices, don't rush in on your white horse and promise to fix everything. That won't end well for you.
SPOT ON - their relationship dynamic is toxic. And he's still pretty capable of being reasonable in the moment (or using logic to defend an unreasonable point), for his stage of dementia. It's a hard problem to work around.
You do not owe them your life.
Having them close by will make YOUR life easier as they age and have more trips to the ER and EOL issues.
But maintain healthy boundaries and decide how much you are willing to do. Your parents have to hire the rest of the support.
I.e., they don't decide to buy a house and instruct YOU to do all the home maintenance.
"Mom, until you get to know the area here and you know where your doctors and hospital would be why not move into "Merry Meadow Community" and then you can take some time to find the right place."
I bet after a while she would realize that a move to "Merry Meadow" is a pretty sweet deal. But if she still insists on a senior housing say..
"Mom, winter is a bad time to look we should wait until spring"
then
"Interest rates are pretty high right now and there are not a lot of units available so we should wait"
I also think if you put pen to paper and write out all the expenses she/they would have in an apartment..Rent, Gas, Electric, Garbage, Cable, Food, (if they are purchasing Property taxes get added in) Insurance, HOA fees if any,
All these would be covered with the fee of a Continuing Care Community. And transportation to shopping, doctor visits, are often included.
If they do not want to leave the area they are currently in it may be that the doctors they are seeing are not so subtly trying to say is that they are not safe living alone. If this is the case then the options are..
In home help.
A Continuing Care community where they will be safe.
If mom and dad accept in home help that might be sufficient for a while.
You ask the moral obligation. There is none.
A parent is obligated to any child he brings into the world until the age of majority.
That child owes obligation to any child HE or SHE brings into the world. Obligation is paid forward, not backward. Every other animal flies the nest and is never seen again. Humanity is the one that asks this question eternally.
You don't mention what you mother wants.
She is the caregiver. Talk with her about how long she intends to/can do this.
She is young.
To my mind your mother should continue to live where she has spent her life and clearly wants to live, and you should visit as you have done. She and your father's assets stand for their care. She can hire help as required. Unless you are telling me there is also no assets in which case you have a REAL problem on your hands, one worse than looking at this superficially.
I would let my mother know she cannot move in with either of you either now with Dad or when Dad is gone. That when she moves and needs care she must move TO care.
This is all matter of what your mother wants for her own life (she doesn't get to dictate anything that involves YOUR LIVES.)
And what you and your sister want for YOUR lives.
There comes a time. It did for me with my brother. He was diagnosed with probable early Lewy's dementia. Had to decided if he wanted to stay longer in his tight little community dependent on the help of friends and hired people, or move closer to where I love and into care, or move where he was into care. He chose the latter. These are not easy decisions and NONE ARE PERFECT.
The thing to remember is that you and Sis need not throw your own lives on the funeral pyre of your parents. It isn't your obligation. Some people CHOOSE to do this. And if they choose it then that is their own choice for their own lives, and they must do the best they can with their choices.
No one can decide this but YOU, your SISTER and your MOM. Dad is out of the equation due both to his history of being uncooperative and his current medical condition. His opinion is irrelevant in your ongoing talks with your mother.
You and Sister need first to sit with one another and decide your limitations.
Then the TWO OF YOU as a UNITED FRONT sit with your Mother and explain first your limitations, and second her choices for a plan going forward.
Who knows. Perhaps she will tell you that their plan is feet first out the door. If it is then you will have to live without the comfort of any certainty and play it as it lays.
Not everything in aging parents will ever be perfect. Most things won't even be good. It's a matter of doing it the best you can and surviving it.
Were anything to happen to my partner (we are 81 and 83) I would move closer to my daughter, who lives several states away, BUT I would move into care. NOT WITH HER. Not EVER with her. And the fact your mother would consider doing this to you I find already a huge reg flag fluttering all over you.
Such places today offer a range of things to do, friends to enjoy, transportation, employees to help, etc. The people who live there seem happier and livelier than those who stay in their own homes because they want to "age in place." Which is one of the worst ideas ever, IMO.
FYI, I am a home caregiver times four for family members. I have no personal interest in getting people to go to senior living places. Observing my mother and how much she enjoyed assisted living for 5 years, I came to understand the perks. Now I have friends in such places. All of them have loved it. When the time comes, I'll be there too.
Your parents can afford a nice lifestyle where they're most comfortable. They are lucky to be able to do so. Encourage them by providing the info they need to get there.
Why does your posting in Discussions have anonymous instead of your name? Alva just reported her post on your thread so they can look at it.
Your children’s needs come first.
BE VERY CLEAR AND BLUNT. I felt terrible that I made my mother cry when I told her my sisters and I did not want to prop up her so called independent living anymore, but I know I made my point.