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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.

Is sister burned out ? She manages or does the doctor appts, ordering meds , other medical supplies , incontinence products , routine shopping , cooking , cleaning , laundry , outside care of the house , mowing etc.etc. Possibly pays the bills as well ( if not you ).

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 .
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Beatty Jul 23, 2024
This. All of this.

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).
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When an elder with dementia is in need of Memory Care Assisted Living, you do not take her over there first to see what she thinks. Because 99.9% of the time, she's going to think it's a bad idea. Which is why it's recommended NOT to even discuss placement with an elder with dementia beforehand. You just drive her over there for lunch, and afterward, her suite is waiting which is all set up for her with her familiar things from home.

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.
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waytomisery Jul 24, 2024
Exactly ,

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 .
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If your Mom has the resources to be cared for by good quality people in her home 24/7, and you and your sister (or one of you) is willing to do the vetting and management of this (yes, there will be management of this probably daily) then you can start with this. If it doesn't work out then you will need to consider a facility and Mom doesn't get to have a vote on this since she is now wandering unsafely outside.

The caregiving arrangement cannot be onerous to the caregivers.
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I agree with those who say the old lady is no longer independent. I have experienced a similar situation. My mother is well off and refused to move, even to live with me. I heard her telling friends who would always praise her for her independence at 94... "I'm fine living on my own, and Caro (myself) is just a phone call away if there is an emergency ". She did not want to hear that these 'emergencies' had become thrice weekly and always required dropping everything I was doing at the time, and my life was severely impacted. It would be better for me if she was living with me where an hour and a half drive through traffic was not needed to solve each 'emergency'. She just denied that she had so many emergencies. A neurologist told me that she was very healthy but her logic and to some degree her short term memory was impaired. So I forced the issue. She complained for a month straight, but has adapted well and found new routines. It is often a fear of change which is the issue. Caring for her at home and cleaning up her house for rental (which the doctor called a 'tip') has been stressful enough to give me health issues. I am also getting old and tired. Doing everything she wanted would probably have killed me by now. Sadly a shortened life is the price many primary caregivers pay. Old people can be very focussed on their own comfort and maintaining the past situation of power. The primary caregivers need to think of their own health and often this goes against what mater familias desires. Killing your daughter because of your own vanity's attachment to independence is not something any sane person does. If mother had all her marbles (and there is a long slippery slope between dementia onset and death which can take years and has many shades) she would care a lot more about the comfort of the primary care giver...and see how dependent she is on this person.... but that is seldom the situation due to loss of the ability to emphathize and understand complex causality in mid dementia, and a fixation on maintaining the illusion of independence to outsiders, because of the admiration recieved, when it is just an illusion. As I said, if mother was sane, and wise, our humbling human inter dependence would be something she could deal with and even find beautiful, but it would require humility and gratitude, and these kinds of old ladies don't like having to feel it.
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MiaMoor Jul 28, 2024
I do hope your forcing the issue wasn't to have your mum move in with you?
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.
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Medical POA means nothing when trying to get someone placed. You need Financial Power of Attorney because that is the person in charge of the money. Medical only means you make sure her medical wishes are carried out. If a health problem occurs that is not listed in the proxy, then medical makes the decision based on what they feel Mom would want. If Mom still understands what a POA entails, then you may find a lawyer to write one up.

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.
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I’m wondering if your sister is feeling burned out, which can happen even with caregivers. Who is taking care of medical issues, ordering medications, supplies, going to appointments, etc.?
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Without having read any of the other responses. your mom is able to make decisions about her living situation if she is able to navigate it on her own.

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.
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1. If no one has POA it may be problematic. Someone may have to become her Guardian unless she is still cognizant enough that an attorney would feel legally comfortable having her sign documents giving POA to someone.
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.
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waytomisery Jul 24, 2024
@ Frederic

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 .
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Your Mom, whatever choice is made, is likely at the end of her life now. Both avenues before you in the matter of choosing what's best and safest for her pose risks. In the case of care in the home there is more a risk of wandering, loss and a devastating accident of some sort. In the case of a facility the heartbreak may bring on changes that make her anxious, unhappy, and more prone to illness and death. You have reached that end game where really there are no good answers. You will have to choose for her as she is no longer capable of rational thinking in the matter, and there is honestly no perfect choice here. Do what you think best and safest, and understand that at the end of life, not everything can be fixed. It is a time of very imperfect choices. I am so sorry and wish you the best.
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MiaMoor Jul 28, 2024
I completely agree. There's no good choice. Just trying to find a balance is all you can do.
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?)
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I think your sister is right. If one of your mom’s many in-home caregivers doesn’t show up, your sister has to step in or manage care. At a facility there is coverage and knowledgeable people to handle anything that comes up. Peace of mind. My mother developed dementia and was not safe in my home as she could not be left alone. She never balked at having to be placed in a memory care unit. She would say, “make it easy on yourself, one visit me as often as you can.” Luckily there was one five minutes from door to door from my house. I went every day for two years until she passed. I praised and pampered the staff no end with doughnuts and flowers and thanks and tried to always include other residents in my visiting time to help my mom acclimate. I planned and coordinated little parties and activities. It was not all doom and gloom! Now my MIL is 98, I’m a widow and her POA. She will not budge and I’m a nervous wreck waiting for her to fall or die or fall for another phone scammer- luckily we stopped a transfer of all her checking account funds in time. She does not care about me or anyone else. She wants to die in her house. She won’t accept help. She’s stubborn and ornery and never liked me. So if your sister is the one near your mom and she’s doing all the work. Listen to her. Your mom is dying- no easy way to go. No best answer but you can save your sister’s and your own sanity. That’s my advice. I have money- my MIL does too but my mom was broke. And even then with a little TLC she had a reasonably good experience and could let me know if anything was bad- which it never was. I was lucky, maybe. I plan to check myself into a facility with multiple levels of care when I sell my house in the next few years. First independent and then stepping down. I WILL NOT be a burden to my children. I love them and want what’s best for them. I wish you good luck!
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waytomisery Jul 30, 2024
Exactly .

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 .
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