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I'm the oldest (65 yo) of 3 siblings and have been spending about 9 months of the year for the past 3 years living with our 89-year old mom and helping her with daily care. I'm her health care proxy and have power of attorney.



Mom has dementia and can't do much for herself, though she is pretty healthy and until recently could walk just fine. We also have a terrific home health aide who comes 10-15 hours a week to help with bathing, exercises and companionship.



The other 3 months of the year, my brother who lives closest, stays with mom at night. But, it's taking a toll on him as his family life is more demanding and complicated than is my own.



Recently, my mom was hospitalized with an intestinal infection and is now in a rehab facility for past 2-3 weeks (her first such visit) trying to regain muscle strength. My sister and my brother want to put Mom in a nursing home/memory care as soon as she's discharged and my sister especially is being very aggressive about it. I personally would like to see Mom come back to live in her own home, the one she was born in and where she is most comfortable.



I'd be willing to retire from my job and live with her and my wife would support that decision. It's challenging to take care of Mom, but I actually enjoy it most of the time. My sister has flat-out refused to help with home care and my brother has reached his limit, which I completely understand.





This conflict, especially with my sister, is really stressing me out. I don't want to see Mom uprooted from her home and community and have to go to facility 3 hours away, where she'll know no-one and have far few visitors.



Maybe I don't see her decline the same as my siblings, since I live with Mom a lot. Maybe I am in denial.



This is my first post and I guess Im looking for advice and suggestions and experience. Thanks for reading.

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I found one more with agents closer to you https://www.aginglifecare.org/
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JDPele Mar 11, 2024
Thanks Mac
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JPD, I think that you have learned from the experience you have gained from this site. That’s great! It makes it worthwhile to keep posting constructively to people who are stupid and nasty – and are not quick learners like you. Your move from ‘aggressive’ to understanding the many realities of long term care options is very impressive. I won’t even mention the move from ‘love’ to ‘affordability’.

Do you think there is any way to get the message across more easily? It’s quite hard to keep going on this unless you think it helps, so some feedback would be good.
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JDPele Mar 11, 2024
Thanks for the feedback MM..yes I've learned a lot here in a a short time.

I guess I don't understand your last paragraph "Do you think there is any way to get the message across more easily? It’s quite hard to keep going on this unless you think it helps, so some feedback would be good."

Are you asking me how I plan to get the message of what I've leaned back to my sibs?
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The absolute best solution is to keep your Mom in her home or your home, but with a daily caregiver and eventually a 24/7 live-in caregiver (if you have the means, this is the best).

My personal experience with agencies and with nursing homes is that is not the best option in my experience (my wife almost died with substandard care and probate issues and restrictive visits, etc.). I have a wonderful 24/7 caregiver now that allows me to spend quality time with my wife and yet not have to deal with the tons of daily care issues and yet deal with shopping, medical care decisions, meal preparation, etc.
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waytomisery Mar 9, 2024
You are one of the lucky ones to have the means for this as well as find someone willing to be a live in and that the live in is working out well . It would be nice if this was common . I’m glad it’s working for you .
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JDP, the Nursing Home my mom was in accepted Medicaid. It had a separate section for folks with advanced dementia.

Both parts of this Medicaid-accepting facility had activities, well trained staff, lovely grounds, therapy dogs, music and joy.

I don't think you should dismiss the idea of a facility that accepts Medicaid if that's what your mom is eligible for.

Getting mom into a NH directly from rehab is easier than getting her in from home. To quote a SW from my mom's journey, "facility to facility transfers are ALWAYS easier. You skip the waiting list".
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JDPele Mar 9, 2024
Thanks BB..encouraging info for sure

I'm not not dismissing Medicaid. We are working to get Mom Medicaid eligible in next month or 2..

I'm just feeling pressured by Sis and her chosen MCU, where the marketing director is telling me "we've got 1 bed left but you have to act quickly." Not so sure about that...
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It’s probably going to be easier to make the transition if she doesn’t go home from rehab and goes straight to the memory care. Is she confused where she is now? My dad is doing a lot better in memory care than he did at home with my mom in their home for 25 years. He participants in all the activities. Within 2 days he was finally on a normal sleeping / waking schedule. There are people for him to eat every meal with. The facility doctor got him off a bunch of pills that were unnecessary given stage of life. There are trained professionals that know the craziness that is dementia. It warms my heart to see my dad in the Facebook posts the facility does doing activities. They have musicians in from time to time. He remembers every oldies lyric but he can’t remember anything from 15 seconds ago. My suggestion is that you need to think about what mom needs in terms of companionship and activities to stimulate her brain. Can you provide that at home? I struggled to come up with activities. My dad was lonely and slept a lot more during the day (boredom) at home. Don’t think about it in terms of if you would like it there. Your brain is not broken so of course it’s impossible to imagine somebody being happy there. But plenty of people are. And we get the peace of knowing he’s got care 24-7. The facility has issues … lower your expectations a bit … but every place a person with a broken brain is has issues, even their own home.
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JDPele Mar 9, 2024
Thank you, I get it...I too have struggled the past few years to stimulate Mom.
Yes, she is confused in the rehab facility.

Frankly, we don't have the $ for these high end memory care units.

So we will try to figure it out and I appreciate the input.
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JDPele: Your mother no doubt requires managed care facility living as dementia does not improve.
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Here is the website for Advocates
https://nahac.com/directory-of-advocates#!directory/map
There used to be one in the Springfield area. But I cannot find one

Since you are in a remote area Also check https://www.solace.health/care/connect-healthcare-advocate?gad_source=1&gclid=CjwKCAiAi6uvBhADEiwAWiyRdqGLTMqAFRZ-BOKVeBPb1N_Kel4hUpjM2329VX8KxLcv7yCYyM8TdBoCp4UQAvD_BwE

Ggenerally the free ones tend to get paid by the SNF but your options may be fewer since they steer by where the funding is best for them.
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JDPele Mar 9, 2024
Thanks friend
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Key word is "enjoy", and I agree. Seemingly contrary to personal aspirations, taking care of your loved one is actually rewarding and providing an insider view into the cycle of life. I feel sorry for my siblings when they miss Mom's little smiles of achievement; joy at the start of a new day; chatting incoherently with 4 year olds ...
The only caveat for me is the need for more company that is lacking in the home, and the heartache that comes as life takes it's tolls. The UTIs, the aspirations, and a thousand other dangers lurking in this crazy rollercoaster. But I think you know all that... As far as sibling resistance goes, you got to be a bit of a politician there and that's hard. I think they want to know mom is safe and cared for, and don't want to feel guilty or beholden. A nursing home provides those things I guess.
So sticking to your guns, so to speak, might isolate and alienate you, which is difficult to deal with especially in a loving, close-knit family. That's my stumbling stone for the last five years, so if you figure out how to cross that rubicon, hit me up,
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Beatty Mar 8, 2024
"taking care of your loved one is actually rewarding and providing an insider view into the cycle of life".

Yes it can be for many. A true blessing if this is you.

For me however, I was assumed into a care role, weighed down with unreaslic expectations that would damange me (financially, emotionally & physically).

Getting over the hurdle of 'family only care' has been necessary & worthwhile. Involving a 'village' of helpers has increased the care PLUS left me physically & mentally healthier.

I have learnt much, I have no regrets. It is very worthy, this journey along the cycle of life. It's ok that we all have different experiences of it.
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Google medical advocate to find one.
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JDPele Mar 8, 2024
Got it..thanks
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IF your wife is happy living in your mother's home, and IF there are enough funds to pay for full time care when needed, do what you want. Those are two big IFs.

Don't worry about your siblings, they can take care of themselves and they don't get a vote. It is considerate of you to ask their opinions and acknowledge their concerns.

The real issues are long term: what if you can't take care of Mom due to illness or needed surgery? What if you and your wife want to take a vacation? What if your wife or other family members need your help and you are tied up with Mom's care?

Mom's needs will increase as YOU age. Is she continent? Are you OK taking care of that? Will she let you?

Can Mom go into adult day programs, to let you and your wife have a life? No one gets married to take care of inlaws when they retire. Put your marriage first, Mom second, and do the best you can with what you have.
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JDPele Mar 8, 2024
Thanks DB...these are great questions and also positive perspective. Appreciate it.
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JD, I think your sister is being a pragmatist here. I doubt she thinks that mom will get more LOVE from professional caregivers. What she will get, if you choose the facility wisely, is a group of younger, trained folks who get to go home at the end of 8 hour shifts, and who aren't burned out.

You also get more eyes on the situation. Medical personnel, like the folks at my mom's nursing home who picked up UTIs and pneumonia long before we saw the subtle changes.

Dementia is progressive. Mom will decline and at some point will need more care than you as elders can give. You will need to move her in the later stages of dementia, and possibly end up with the sort of disaster that MidKid's family faced.
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JDPele Mar 8, 2024
Thanks BB. I hear what you say and will try hard to do the best for our mom. Actually, this site has been so helpful and last night I had the best and most productive conversation with my sis. Yes, we all want the same thing,
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It is always interesting when the peanut gallery starts throwing bombs at the person who is doing all the work. I am in a similar situation accept in my case, the person with dementia is my husband and the peanut gallery is his adult daughters. Yesterday, I spoke to a friend of 40 years who is in a similar situation with her brother. The role of Caregiver is exhausting and thankless. What you need from family is support and empathy. When the people who are around you constantly berate you, it makes the Caregiver's life hell.

Many people are under the impression that a durable power of attorney and healthcare proxy give you the right to do anything you darn well please with the person's money and body. That is wrong, your role is to do for the person you are caring for what they desire and what they would do for themself if they could. You are merely their agent. So explain that to your siblings and ask them if in their conversations with their mother she requested that they move her in to a nursing home.

Another common misconception is that dementia patients, disabled people, and elderly people are mentally incompetent by definition and unable to make their own decisions regarding how they live their own life. In fact, although it is different in every state, most courts will not take away an individual's right to live independent unless they are a danger to themself and others. When dementia patients are placed in nursing homes, they deteriorate very very fast. In the majority of cases, they die within the first 30 days. I don't know about you, but I sure wouldn't want to be the one imposing the death sentence.

What I did is ask my husband's doctor if he thought my husband should be placed in a nursing home. Of course he said no. Then I invited my husband's children to enroll in the memory clinic education workshops and support groups so that they could have factual information upon which to base their opinion and become part of the care team. They never did and now they just talk about me behind my back. I don't care. They also have no contact with my husband. It took me a long time to understand why but then one of my husband's nurses said it is very common when there is money involved. In my case, I am a second wife. If my husband dies before me, his daughters will have to wait until I am dead to get their inheritance. His oldest daughter is a Queen Bee. She bullies everyone in the family until they cave and she gets her way. She hasn't spoken to me since my husband refused to relinquish power of attorney to her. Also, non Caregivers often feel guilty because they are not doing any of the work. if they can convince the family to put their dementia family member in a nursing home, then the entire family is on an equal footing.

If I were in your shoes, I would inform my sibs via group email that after discussing it with her doctor thinks she your Mom is perfectly capable of living independently and moving her to a strange environment is simply too traumatic and should only be considered as a last resort. And she isn't at that point yet. Next, I would explain to your mom that some family members feel she would be better off in a nursing home and ask her what her wishes are. I would include your Mom's response in the same email. Next, I would invite them to participate in some support groups, request that they have dinner with her once a week, and call her at least once a week. Finally, I would state as healthcare proxy, I am legally mandated to comply with Mom's wishes with advice and guidance from her physician so for the time being, she will continue to live independently. In my group email to my husband's family, I informed them that my husband's care is not a family decision; it is his decision and as long as he is safe and until his doctor tells me otherwise, I will abide by my his wishes. In my case, the troublemakers stopped talking to me and the people who care show it.
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waytomisery Mar 8, 2024
Being independent , is not the same as needing never ending help while she lives in her home .

And where did that stat come from that the majority die within 30 days ???

And how can someone demand they come to dinner every week ?

At some point a person with dementia can not decide where they can live safely because they forget that anything is wrong with them. So of course when asked they will say they don’t need a facility .

Keeping a spouse home as long as possible is different than an adult child leaving their job, community , friends and putting a parent ahead of their marriage .
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I am sorry that you and your siblings do not agree. I have the same issue and it has not been easy. However, as POA and all, I am the decision maker and I just eventually had to be very clear that this is not care by committee.

I think you should discuss with your sister at length and understand her position.

There are many things to consider. All the other posters have already talked about your potential for burnout and the toll it may take on your marriage, etc.

When it comes to your mom, there are also things to consider. As dementia worsens, she becomes more of a danger to herself and you need to be ready. For example, my mother began to get up at night and go through closets looking for something (I never did figure out what). One night, she pulled something down on top of herself and cut and bruised her face. All I could think was that she could have been knocked out and I was at the other end of the house where I could not hear her fall while I was sleeping, since she liked to sleep in, it would have been 5-6 or more hours before I found her. She would also try to go outside to talk to people she imagined out there. We had locks that she could not operate but if she ever did figure them out (and people with dementia do odd things) she could have gotten outside. A friend's mother got outside in her nightgown during Feb in Philadelphia...that could have gone very badly! My mother fell three times trying to go to the bathroom because she forgot to use her walker at night. All of these things become less of a concern when there is a 24-hour monitor at a facility.

A word or two about facilities. It depends when, where, and what kind of facility as to the care mom will get. A nursing home or rehab hospital is much much different than a memory care facility. My mom spent a few months in a NH and spent most of her time in bed even though they had activities because she thought she was in a hospital. even though they would try to get her to go to activities, she would rather stay in bed so they let her. They had plenty of bed-bound people that needed to be changed, etc so she did not get immediate attention when bedding needed to be changed etc. Also, she did not remember to tell them that she needed anything so she didn't get a lot of attention (squeaky wheel theory). Now, at Memory Care, they get her up each day and take her to breakfast, then to activities. She can take an afternoon nap but they will get her up and moving after that so she does not just lay in bed all day. Because she is not in bed all day, changing is less frequent because she can get to the bathroom easier.

My suggestion is that you tour facilities. If you don't need it right away, you probably will eventually and it is good to know what is out there. Talk with your sister more and understand why she feels so strongly. Is the facility she likes closer to her where she can visit mom? At the beginning, you can go visit your mom daily and make sure things are as you need them to be. Eventually, you can go less often.
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JDPele Mar 8, 2024
Thank you
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Without saying it directly your siblings are telling you that it has gotten to be too much for them. That is their right. As POA you can do what you want but you can't force them to bend to your will. If you decide to do this realize you are on your own.

Why is it so important to keep your mother in her own home and basically torpedo you life to manage that? How long do you think your wife will remain on board with this? What happens when your mother's care needs get to be more than you can handle even with a bit of outside help? At that point will you have a life to go back to? Why can't you bring her to a MC close to you and just visit all day long? At least you will be able to sleep at night. And if you were injured or sick you would know she still had others caring for her.
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JDPele Mar 8, 2024
I understand now what my sibs are saying and I am accepting it. Being on this site for just 2-3 days has opened my eyes to how my relationship with sibs needs to improve. I started the conversation asking how to deal with difficult sibs. Maybe I'm the difficult one! I get it.

I appreciate your questions. But, frankly we can't afford a memory care unit. Something my sibs don't seem to understand. But, in a few days we will meet with a respected estate/ Medicaid attorney and maybe then more options will emerge.
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Listen to what members are saying about taking on too much responsibility. Pay attention to what OT, PT and social workers are saying about mom's recovery prior to rehab discharge date. Do not expect siblings to assist you here. Two suggestions, maybe 3... Seek legal help to ensure the POA will be effective for you to take over. Some POAs were written years ago and may not have enough"teeth". The second suggestion is to see a medical advocate. They may charge $200 an hour but they will be well worth it. My MIL's family did this when her $$$ would run out withing 6 months. She was a MA resident. The advocate gave a list of Medicad facilities that were the best in his opinion. Family researched and chose top 3. The problem with places is that there is a wait list for Medicaid beds but paying residents get top priority. Within 2 months a bed was opened to get her in. Within 3 -4 months, family was filing for Medicaid. Guess what? Current paying residents go to the top of the Medicaid wait list bypassing all others as a current resident. You are at that phase now. After telling you this piece of information, if you take mom in to your home and the money runs out, and you get burned out, will you be willing to wait several months for a bed to open up? And this might not be a top rated facility.
Your mom has been in rehab for about the maximum insurance days so you are already behind on this. So along with taking care of mom if you so choose, you may have difficulty getting out of the house.
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JDPele Mar 8, 2024
Thanks...great advice. Where do I find information on medical advocates?
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The siblings may be jockeying to have ALL the fun of caring for her.
Make them that offer.
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My Mother who is 86 has lived with me and my family for 22 years, the last 3 with dementia. Had a brain MRI done Nov., 2023 and diagnosed with severe micro vascular dementia. Mom has gotten pretty bad both physically and mentally with stair steps downhill especially the last 5 mos. I am the oldest of 3 (66) and my brothers help in no way except one with verbal support. Know if her heart problems don’t take her first she will need to go to a facility at some point as I suffer from terrible chronic hives from the stress this has all put on me. Plus I know my very giving husband has given more than his fair share over the 22 years. Life is not always fair but her friends (who have gone through this with their Mothers) have told me there will come a time and I will know it. Praying I recognize that time.
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waytomisery Mar 8, 2024
fieldhouse ,
Chronic hives is your sign that it is time now .
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JD,

Initially I thought it would be possible for my mom to live with me so I could support her for a time. I had been noting changes in her memory and odd actions, and I brought her to visit my home.

Thoughts of any type of homecare were gone the second night. It was the single most frightening event of my life, being attacked by my beloved mother. She attacked me while I slept and was delusional and hallucinating. She is fairly high functioning for the memory care, but for the safety of us both, it's where she needs to be.

That happening was a real eye opener for me. And it stopped me from giving up my life. I'm POA and monitor what happens with mom (she's less than 10 minutes from my home), but I also realize and see, she already is not the mom that I grew up with and knew and loved.

Don't think and make decisions based on memories. Look at the reality of the present.

Good luck in your decisions.
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fieldhouse Mar 8, 2024
“Thank you” for writing.
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Providing home care for your mother will eventually take a dramatic toll on you, your marriage and relationships with your children and friends. I agree with others who have suggested that you explore your willingness to essentially give up your life to take care of your mother when there are other options. One of the reasons that AL works so well is that caregivers get a break every day. They go home to their families, have days off and take vacations, all of which is necessary for good mental and physical health. Perhaps you could see a therapist to talk this out. Self discovery is essential to you while you’re considering the next steps. I wish you good health, happiness and good luck.
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JDPele Mar 8, 2024
I agree. Got my doctor's appointment in a few weeks and therapist is a good idea, Im thinking about--my wife says the same thing as you. Thanks
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Please note that whatever decision you make, there will be guilt. There will be people who are going to judge you. There are some who can do this and it does not affect their family dynamic, but usually that is when all are in agreement. In times past families didn't have these options. Everyone took care of their parents when the time came. Times are different and people are different. Just know that whenever any change is made you WILL see some decline. It is inevitable.
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Southernwaver Mar 8, 2024
Yes and in times past, that job was usual put upon the oldest daughter or the unmarried daughter and she didn’t have a choice.
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You have posted early on that your sister “thinks that hired hands in some facility can provide better care and love than mom's own children and mom's home aide”. That makes your own view very clear. You DON’T think it’s possible for that to be true.

Some things to think about:
1) ‘Mom’s own children’ don’t always provide great care. They aren’t available 24/7 because they have to sleep. As they get more and more tired of it, they sometimes skimp.
2) ‘Hired hands’ are attached to people with hearts and brains. They often care a great deal about the work they do – as is the case for many workers, certainly for me and probably even you. The people with the hands go home to a different life, which keeps them fresh and sane. That’s a good thing. Over-involvement and burn-out are NOT a good thing.
3) ‘Better care and love’, certainly love, is not related to living in the same house or wiping her bottom yourself. You can still love your mother without being next to her, breath for breath.

Try to let your preconceptions go while you work out the best things to do. Your question asks ‘how to deal with siblings’, because ‘my sister especially is being very aggressive about it’. Your take on what you think your sister ‘thinks’ is actually one of the most ‘aggressive’ statements I have read on the subject. Don’t let your preconceptions ruin relationships with other family members. Read Midkid's enormous thread if you would like to see just how bad this can get.
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JDPele Mar 7, 2024
Thank you . I regretted my comment about hired hands as soon as I sent it. It wasn't right and thank you for pointing it out.

Maybe my "preconceptions" are wrong, but I see my mom now in a "highly rated" rehab center and she lies in her bed, sometimes wet and uncared for unless me or my wife or our health-care aide (I guess a hired hand that we love) comes into advocate. People are just over worked in these facilities.

I will read Midkid.

Thank you
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Welcome to our world (posts here). Really, welcome. Glad you are here. It is an incredible / incredibly helpful site.

My sense:

1) you are the primary care provider - and you have the support of your spouse.
2) you have legal authority.
3) If I were you, I would commit to do what "I" (meaning you) want for your mom. If it gets to be too much, and it likely will, you can always make another decision.
I wonder if you know how much work it really can be - and will be. 10-15 hours of a caregiver won't be enough. You will be on or need caregivers around the clock 24/7.
4) Be clear that you are separating (in your head) the sentimentality of wanting her to be / live out her life in her home) with the reality of what her needs are / will continue to be, i.e., emergency trips to the hospital, incontinence (or already?), insuring she doesn't fall out of bed, or get out of bed... it goes on and on.

5) And, you want her to be as comfortable as possible. Make the decision on what is BEST for HER, not you or not as you would want the situation to be. She already has dementia / that could get worse. If she already needs / would benefit from memory care (24/7), then I believe that is your answer. Put your own wants aside and do what will serve her more / best.

I would though talk to MD, hospital, social worker, and start researching memory care faclities and ask them - what they offer.

You will burn out. No question even if you enjoy most of the care you are providing now. The relationship with your wife will change - as she likely will too (stress, wanting more 'us' time and not able to have it or it will severely decrease with the more time/care your mom needs). I encourage you to not take your spousal relationship for granted - in that I mean, that both of you will continue to feel as you do - a united front / intention. You want to put your marriage FIRST. (Or at least I would). You and/or you mom have the luxury to afford the care of a memory care facility - some / many cannot. It is a balance although don't lose your marriage / that connection due to taking on more than you can handle or think you can handle.

Still, if you want to 'try it out' for a while longer, do - you can always change your mind and place her in a memory care unit/facility (or so I believe). I do not know / see why it is 'essential' to do this transition now (or why your siblings feel that way). Perhaps this is a good question to them ... and medical professionals.

Gena / Touch Matters
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JDPele Mar 7, 2024
Thank you so much for your kind and helpful reply Gena. The many excellent points you raise I will think long and hard about.

One factor that is troubling me is the "rush" to put our mother in a memory care unit. The fact is we are not financially able to place her in a memory care for a long time. Her current assets will pay for only 4-5 months in a MCU. Then what? Of our siblings I'm the most able to help financially. Sis says she will contribute, but it's not a wise move imo, and brother can't help financially. My sister seems to think that this high-end MCU that she's identified won't "kick mom out on the street" once her assets are spent

I have scheduled a meeting, in 2 weeks, with an outstanding attorney who specializes in estate planning and Medicaid applications. Hopefully, that will provide us all some perspective and guidance as we navigate this situation.

Again, thank you for the advice from the heart. Much appreciated.
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JDPele, because I saw you mentioned somewhere in a response that you were seeking to apply for Medicaid for MC (memory care) for your Mom, please know that in MA this is not something that Medicaid covers in your state. Most states' Medicaid only covers LTC, which is assessed as needed by a physician (it usually means the person is bedbound or has a profound illness requiring a lot of daily medical attention).

Source: https://www.memorycare.com/memory-care-in-massachusetts/

This means one has to qualify for Medicaid in 2 ways: medically and financially. In most states the "look back" period on the financial application is 5 years, so as your Mom's PoA it will matter a great deal how you manage her affairs. Each state has Medicaid Planners that will know the ins and outs of how to qualify. Sometimes a state offers a special financial trust where one can "off load" money in order to qualify sooner (and then upon death that trust money goes to the state as part of the recovery).
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waytomisery Mar 6, 2024
Not sure if Mom lives in MA since JD and Mom live 8 hours apart . Unless JD mentioned it somewhere and I missed it .
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First of all, feel confident that you will see mom through. Start there. She is no longer able to care for herself. You are in the position to make the best decisions you can for her which means making the best decisions for the family as well. And yes, I think your position has you perhaps a bit close to the situation and not as able to see the larger picture.

Things need to be what’s as good for everyone concerned as you can make them. Your decision has a ripple effect. I would focus more on you and your wife and your immediate family as they will be the most affected.

About the facility 3 hours away. Which sibling is that near? Is that still 8 hours for you or further? Are you still going to have to visit mom as a long distance caregiver, only now you would be in a hotel when you visit?
If the 3 hours is to put mom in some equal distance location it might end up feeling like she is in the middle of nowhere alone.

People sometimes have a notion that to take care of someone in a facility is easy. It is not. Your mother will need an advocate seeing that her needs are being met on a regular basis.

What were your plans for retirement outside of being mom’s caregiver? Were you planning to return to her community? Will your wife have to also retire early or can she work from wherever she is?

Do either you or your wife have illness to manage now? Are you both active, free of diabetes, heart disease etc. Often I think we as caregivers forget that we are going to age as well as our parents. Medical care is not equal across our country.

When my DH aunt had to go into a facility at 94, DH did not want to move her from her community. I didn’t either but we are going on three years now. We live two hours away. I visit her once a week and spend most of the visit doing maintenance. And it’s needed. I wish I could say I don’t worry about her but I do. I don’t feel guilt, more like dread and resignation and being on hold. She has few visits during the year. She has outlived her contemporaries and many of her nephews. She has no children and very few family members who visit at all. She’s lucky to get a few cards each year. And she was a well loved and respected and involved aunt. Her most faithful visitor is from her church. She’s been on hospice for several years but other than being bedfast is in pretty good shape. For reference she didn’t become bedfast until 93.

I would listen to my siblings to a degree but if you already know you are the one who will be caring for mom, wherever she spends her final days, then do what is best for you and your wife. The decisions you make can be generational and affect more than where mom will be cared for..

A word about Medicaid. Your attorney will explain that mom can exempt her home for while she is on Medicaid and that a lien will be filed on it. So you may be thinking you will have time to deal with the home. In some areas taxes can be delayed for elders and will be paid after the elder passes and the property is sold. Otherwise, someone will have to pay the taxes and all the upkeep on the home. Mom won’t have the funds. So if she goes on Medicaid, just know that delaying the sale of the home can become a big expense. Many recommend selling it right away, using the proceeds to pay for her care and file for Medicaid after she has spent down. Be sure to speak to your attorney about your options. It’s a big job to be POA. Wishing you luck with all these difficult decisions.
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JDPele Mar 6, 2024
Thanks so much 97...this is really helpful and so very positive. 10-15 years ago our mom transferred ownership of her property to her 3 children. We share the taxes, landscaping and maintenance costs--she has a life estate to stay in her home.

The facility that my sister is pushing is down the street from where she lives, but still 8 hours from where we live. My wife can work from anywhere, but she prefers to stay in Maryland, where our grown children all live, rather than Mass. We are in pretty good health in our own mid and early 60s, but I'm starting to worry a bit about my own health due to the stress with dealing with Sis.

Appreciate the support and I will take your advice to heart.
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JD, when you meet with the attorney, ask about farm exclusions for medicaid. I have read something here that said working farms are not the same as just a house. It could very well be that the farm doesn't have to be sold or go through MERP.

Best of luck with this hard situation. I will recommend that if mom is placed that you and your siblings have a meeting of the minds about how to advocate for mom to ensure she is getting the best care possible. Facilities are like every other business and right now, that means understaffed and possibly uncaring staff. You guys will have to be a presence and be willing to move her if the facility is not taking care of her. Don't get me wrong, not all facilities are bad and sometimes they are the best choice, you just have to be aware of the care.
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Geaton777 Mar 6, 2024
Yes, farms can be different. My son's partner comes from a family farm in PA and he was telling me how the succession is set up through a life lease. It may require a minimum amount of acreage. The Farm Bureau online has info on it.
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You and your siblings need to discuss your mother's needs in a meeting (or several) with the care manager/social worker at her current rehab facility. Ask the care manager to outline the tasks that your mom needs help with, the types of care that is available and that she qualifies for, and the expected date of her release from the rehab center. Bring copies of paperwork that give you the decision-making powers for your mom's medical and financial affairs. Let the social worker/case manager know what the current arrangement has been and what you and your spouse are willing to change to meet your mom's needs. Ask each sibling what he or she is willing to do to help mom. Help may be hands-on caregiving or it may be help that frees up some of your time (doing laundry, grocery shopping, running errands, yardwork...) or paying for service(s) that would help mom (or you). In the end, the person with the legal documents for health care decision-making and financial decision-making get to decide on what arrangements are made. Seems like that person is you - even if your sibling(s) do not endorse your decision.
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JDPele Mar 6, 2024
Thanks Tara..this is good advice and I'm trying hard to keep all involved and not be reactionary. Getting more in-home care is something I'm pursuing as an alternative to care facility. We had such a meeting with rehab case manager this past Monday and hope to have another in 2-3 weeks as mom regains strength lost while bed bound.
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I think you need to very kindly cut your sister loose. Let her know that you understand she is done with caregiving and she is no longer obligated to pitch in. She can stay a daughter and visit as much or as little as she prefers, and no overnights unless she wants.

You don’t want an angry and resentful caregiver for mom, so it’s in everyone’s best interest that your sister no longer caregivers.
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Southernwaver Mar 5, 2024
Or cut her loose as an occasional visitor, whatever the case may be. That may temper some of her pushiness.

Have you asked her why she has her POV? Have you listened to her reply?
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This is how it often goes. Aging in place (home) works.. until it doesn't.

It can stop working well when;
1. the care needs increase
2. the caregivers decrease their input (decide to pull back, burn out, fall ill themselves)
3. both - needs increase & care team shrinks

A review of the 'Care Plan' is then needed.

The care team can split into Home vs Facility.

Each adult is free to choose their level of input for themselves. It can differ. Insisting each offer exactly the same is not reasonable. Some will have dependant children, an ill spouse, live far, have a job with travel, or even no apptitude or wish to be a caregiver.

The Care Plan must work for EVERYONE in the plan. Otherwise resentment will grow.

So what's reasonable?

Your siblings step out.
If you wish to try Home for longer, you will need to replace them with paid care staff. Is this possible?

It will need;
1. funds (Mom's)
2. a team of reliable staff
(Sometimes being in a rural or regional area prevents finding staff)
3. a person to manage the care staff (this may be you at your choice).

What about a compromise?

Say another TRIAL of Home Care & re-assess in 3 months, 6 months? As Plan A.

Start researching appropriate facilities as Plan B.

My final words are to examine your own motivation. Ask yourself if you are feeling GRIEF? It would be totoally normal if you were.
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JDPele Mar 5, 2024
thanks Beatty..so very helpful and logical
just trying to figure this out..my brother and I are able to be rational, not so much my sister...but your words that the care plan needs to work for everyone is key..we will try..thank you
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"I'd be willing to retire from my job and live with her and my wife would support that decision. It's challenging to take care of Mom, but I actually enjoy it most of the time."

Oh dear.

Your wife comes first. That was established the day you got married. Would you want your kids to put their spouse aside to live with you? As benign as 'taking care of mother' sounds, you'll be leaving your wife. For however long Mom lives. Your job, marriage, your whole world, will be tossed aside for Mom. This will not end well for anyone. In some ways it sounds like you'd be happy to just stay with Mom forever. Why?

I'm sure, like many on this forum, you have good intentions. But yes, you are in denial. Mom needed assisted living a long time ago. She may feel she is living independently, but she isn't. She is living in her home only because her kids keep propping her up. That is an illusion.

As things worsen, the Mom you know will not be there anymore. You say you want to keep her in her house and not move her where she has no visitors. But before long, friends won't want to stop in and chat anymore. She will not recognize them or not be able to carry a conversation. She may not even recognize you. Consider that assisted living has lots of people and activities that could be helpful as she declines.

You say it's challenging to care for her but you like it. Why do you like it? I don't think you have bad intentions at all. Just misguided ones.

Does it make you feel like a great son to swoop in and take care of her? That you gave up your job and wife for her, for likely years on end, because it shows how you're so devoted to Mom? I've seen this with some caregivers. That the more you sacrifice your life, the more devotion you have. Problem is, this is not love. It's martyrdom.

I don't mean to say this is an ego trip for you, not at all. I mean that you've possibly confused this level of caring for Mom as a way to soothe your feelings about her eventual decline and death.

But there is no getting around it. She IS going to decline and die. And you're going to lose YEARS with your wife. This was supposed to be your time to enjoy the empty nest phase while you're both still able to travel or whatever you wanted to do. What if your health fails (and caregiving can kill people, it's a fact) or your wife's does? You say your wife is okay with it, but it's common for spouses to say "sure, it's fine" because what are they going to do? Clamp themselves around your leg and beg you not to go? If your wife is fine with you being gone for months or years, it leads to wondering if she is happier without you there at all.

If you're hell bent on living with Mom... will you be comfortable bathing and toileting her? How will you handle it when she becomes incontinent? How will you handle it if she starts sundowning, gets agitated, or keeps you up all night because she can't settle or tries to wander off? The stubbornness and denial with “keep mom home no matter what!” can ruin an elder’s life way more than even the worst nursing home could.

Please stop and consider the future for all involved.
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JDPele Mar 5, 2024
Thanks Loopy. I came here looking for input and your comments are really helpful for me to reflect on my own motivations and what's best for the extended family.
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You are POA so it is your decision.
However you spending 9 MONTHS each year with your mom must be taking a toll on your marriage.
Unless you are able to retire with full benefits I think you are crazy for "quitting" / "retiring" from a job before you should. What will you be losing by retiring? Full pension? Insurance?

If siblings think mom should be in a Memory Care facility or even Skilled Nursing if that is needed don't count on the help that they have given in the past.
This would all be on you, you would not get the 3 month break that you have in the past.

Caring for mom will get a lot more difficult.
She will continue to decline.
You will need more help, you will need breaks. You can not do this 24/7/365.
You should increase the hours that you have help.

But bottom line...this is your call as you are POA.
The only way that that will change is if your brother or sister decide that they would want to become mom's Guardian. If they try to do that they would have to show that you are not caring for mom, that you are not making decisions that are in her best interest.
BUT getting Guardianship is not easy, it is expensive and it is time consuming.
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JDPele Mar 5, 2024
Thanks Grandma.. I hear you and appreciate what you say here.
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