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.
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.
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?
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.
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".
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...
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.
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.
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,
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.
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.
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.
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.
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 .
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.
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.
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.
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.
Make them that offer.
Chronic hives is your sign that it is time now .
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.
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.
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
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
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.
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).
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.
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.
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.
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.
Have you asked her why she has her POV? Have you listened to her reply?
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.
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
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.
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.