My 98 year old mother has moderate slowly progressing dementia but she has no other medical problems. She lives in her own home help from with a 5 day week 40 hr week daytime home health aide and my 30 year old son living in mom's house and providing some supervision in the evening and nights. Recently she wandered off in the evening and my sister and I decided she needs more care. My mom has adequate money to pay for around the clock care and we can get more care through a nursing agency. My mother has been adamant that she wants to stay in her own home . My sister who lives 30 minutes from mom wants to put wants to place her in a facility that has memory care near my sisters home. I brought her to the facility to visit and my mother became angry stated ahe did not want to be in the facility and walked out of the interview.. Even though she has short term memory deficits and poor judgemental she knows she wants to live in her own home and she has not been legally declared incompetent. I feel we should follow my mother's wishes and hire additional care to allow her to live in her own home. My mom signed a designation of health care surrogate that designates my sister as primary health care surrogate and myself as alternate if my sister can not serve. My mom's assets are in a revocable trust that designates me my sister and my mother as equal Co trustees. No one has a general power of attorney . My mother and sister live in Florida and I live in West Virginia. My sister and I are at a deadlock as to whether to keep my mom at home or move her to a facility. Not sure how to proceed.
Your Mom’s wishes can be granted so long as it’s not too much of a burden on your sister who is responsible for handling your mother’s life .
Your mother is not independent . She relies heavily on others to keep her in her home. When this is no longer working for the family , Mom’s living situation changes.
Nobody needs to be burned out to grant an elders wishes. The caregivers life matters too . BTW most elders say they want to stay at home . Your mother is not aware of how much work this is on your sister . With dementia so far along that she wanders outside , Mom can not make this decision for your sister to continue managing Moms life at home . When the additional homecare help calls off sick are you going to come from WV to cover the shift ? Who has to respond to emergencies ? Your sister does .
Considering most of this is on your sister , if she is saying it’s too much managing this from 30 minutes away and she wants Mom in MC near her , I think your sister gets to make this decision . You aren’t in your sisters shoes and your Mom can’t recognize that this is a lot on her daughter . SISTER gets to SAY WHEN she’s has had enough of the current situation and place Mom . Your Mom is the one that needs help , she does not dictate your sisters life . Those that need help ( your mom ) are the ones who have to compromise . I think you should hear what your sister is saying and put yourself in her shoes .
I have read your reply through 3 times now. And I will read it again.
When MY health changes, MY life will be changed. I hope I retain the good sense to rise to that challenge. To adampt & CHANGE my life in accordance to my NEW needs. (Not expect others to change their lives so I can stay the same).
When dementia and wandering sets in, it's no longer about what the elder wants or is "adamant" about, but what she needs to stay safe. I cared for a couple who suffered from dementia years ago, who were insistent on staying in their own home w/o 24/7 care. Their daughter agreed. Jim left the house one night at 2 am, fell in the street and laid there for hours until he was found and 911 was called. He died the next day of a subdural hematoma.
I think your sister gets to call the shots here since she is your mother's primary caregiver. You living far away means you do no hands on caring and are clueless about what your sister is going through. Unless you want to move to FL to take over moms 24/7 care, let sister handle this with either placement in Memory Care Assisted Living or by hiring 24/7 caregivers.
Unfortunately , very often the far away siblings are clueless about what it’s like , and side with the parent . The far away sibling wants to keep the parent happy .
The only impact the far away sibling has is phone calls listening to the parents complaints , wishes and wants .
That pales in comparison to the local sibling with boots on the ground.
Yes, the primary caregiver calls the shots .
The caregiving arrangement cannot be onerous to the caregivers.
The long trips were bad enough, but having your mum in your home means that you are her carer 24/7. It's unsustainable.
If she isn't already, have yor mum placed in the nicest facility possible. And don't feel guilty as you wave goodbye.
You need to prioritise your own wellbeing.
At 98, I may just let her stay in her home. There may come a time she us really out of it. Then you can place her without her approval.
Once your mon needs help in navigating and executing her living situation, she needs to bow to the exigencies of the needs of others. The ball is no longer in her park.
Once we are no longer truly independent (i.e., we are being propped up by others) we need to take their needs into consideration.
2. If she has not been declared incompetent she can still make her own decisions.
3. It sounds like she is willing to have caregivers 24/7/365. It sounds like she has the funds to do so.
Personally I would arrange the caregivers 24/7 and let her remain in her home.
I think she would do better at home.
I think a move to Memory Care or even Assisted Living would cause a decline.
Assuming Mom stays home ….
Your burnt out sister is not obligated to help make this happen nor , manage mother’s care . She can step back from propping up the mother living at home , in all ways. She can refuse to do anything at all , Dr.appts , shopping, order meds , respond to emergencies etc .
Then either your mother , you or someone else, will have to set this up and manage her needs . Managing homecare from a distance can be very difficult, especially , doctor appts , emergencies.
Your mother’s “ decision “ to stay home requires help from other people . Mom is not independent . Others around her have the right to say they will not or can not help anymore , or it’s too difficult to manage at home . Often this is when the house of cards falls , and placement happens .
I’m not saying your sister would refuse to help entirely , but just an FYI she could . She could give up being primary healthcare surrogate .
I think fredericd has to realise that the balance may be the mum's wishes against the sister's wellbeing. If a compromise, such as an increased care package, can help then that's great. Otherwise, I would say that the sister's health and wellbeing need to be prioritised now.
That's the trick - working out what the priority really is. We get caught up with misplaced guilt and a needless striving for perfection that is unattainable, when we really just need to accept the inevitable and go with "good enough".
This is what I'm dealing with and why I have given up on aiming for the best and learned to settle for whatever little wins I can get.
The district nurse spelled out for my stepfather, earlier this week, what I worked out some time ago: my mum is unlikely to last the year. I'm thinking it could be weeks, rather than months. Her COPD, dementia and lack of eating have all conspired to age Mum decades more than her 75 years.
The dilemma, to my mind, is how best to keep Mum comfortable. In her own home is preferable, but not if it becomes too difficult, either for her carers or for her wellbeing.
Her husband has been insisting that she walks between the living room, bathroom and bedroom of their tiny flat because if she loses all mobility, she will become bed-bound. That seems reasonable, on the face of it, except Mum is now extremely frail.
It's too late for exercise - he should have allowed me to make mum go for walks, get fitter, and prioritise rehabilitation after her stroke, 13 years ago. He wouldn't even allow me to teach Mum how to make a cup of tea, again.
(He became verbally aggressive with me for using my schoolteacher voice with Mum, but it was the only way to push her to do anything, including eating. In the end, though, I had to admit defeat and back off. I knew the end result would be Mum's mental and physical decline, but I wasn't next of kin and had no say over Mum's care.)
I pointed out to him, just yesterday, that not only is Mum in extreme pain, she's weak, struggling to breathe, and at risk of having a fall. Even with a carer by her side - I walk backwards, with Mum holding onto me for support, but he's insisting (control) that the carers just take Mum's arm as he does.
As long as she can take a couple of steps, get up and sit down - with assistance - there's no reason not to use the wheelchair between rooms so Mum doesn't fight for breath as much, or feel so much pain.
Soon, Mum won't be able to do anything, no matter what. She's already struggling to stay awake when her children and grandchildren visit. Little things, like cleaning her face makes her cry out.
The palliative team are on standby; they've been in contact and are at the end of a phone 24/7. End of life meds have already been prescribed and are waiting in a locked cabinet.
This morning, when I saw how much pain she was in, I thought that Mum would be better off in a care home. But it's about weighing her wishes - to stay with her husband - which will directly affect her emotional and mental wellbeing, with what's best for her physical care. So, I just have to keep chipping away, until my stepdad gets on board with prioritising Mum's comfort over keeping her mobile or any of the other unnecessary things he's insisting on. It's just too late now for any of that.
(Btw, I'm also concerned about his wellbeing, and I'm aware that he's been unable to accept what's happening to Mum. I'm angry with him, but I also care about him. Families, eh?)
I believe OP’s sister has her reasons why this is not sustainable for her any longer even with more help brought in . We are not hearing her side of the situation . OP who is not there all the time really has no concept .
If OP was willing to move near Mom and manage this , ok . Any other scenario still leaves the sister to be the one to handle last minute lack of at home staffing issues , emergencies etc . Or even worse, the 30 year old son of OP who is living there having to do hands on care. The sister knows this , and that’s why she is not giving in on this deadlock. Good for her .