My mother is 63 has MS and diabetes. She is currently living in the nicest independent living facility in our city. She moved herself in to my grandparent’s “apartment” at the facility 3 years ago after my grandfather passed away. Before that she was living in a garden home and although she used a cane occasionally she drove and was completely independent. My mother is an only child and was unusually obsessed with her parents. They came before anything else. Even me and my brother. She claims the reason she moved into the independent living is “when her MS gets bad my brother and I won’t have to worry about her”…..her moving into that place has been nothing but a curse. I was very vocal about my feelings about her moving into the independent living. As the saying goes, “if you don’t use it you’ll lose it”. I knew that if she moved in there and had so many things done for her she would lose motivation to get up and move. I was right. She developed a stage 4 wound on her bottom that gave her sepsis and sent her to the hospital June 2021. Since then she has not gotten out of the bed. She is completely bedridden. She can not toilet and often refuses to even sit all the way upright to eat.
My mother has 24/7 sitters with her in her independent living apartment. She is spending $25k+ a month in sitters and her rent to the independent living facility. She inherited a lot of money, but at this rate this money will not last forever.
My husband and I are 36. We own a video production company and have four children ages 14, 12, 9, and 6. I absolutely cannot take on caring for my mother with four young children. Although my brother and mother definitely hint that they wish I did more than I do—which is visit her 1-2 times a week and run the occasional errands for her. My brother is single with no children and visits 3 times a week.
My mother more than qualifies for a nursing home. But she and my brother refuse to even discuss it. But we have to! She is going to run out of money in a few years and then where will she be? One of my brother’s fantastic ideas is to move my bed bound mom into a garden home alone and keep the 24/7 sitters. Do y’all hear this nonsense? That’s incredibly unsafe. It would be cheaper than the $4k a month rent at the independent living, but that’s not even what the bulk of the cost is. She is paying $20k a month for the sitters!
To me, the best option is to find a really nice nursing home now while she can still be choosy. She is already living in a makeshift nursing home in her apartment with the sitters, I truly don’t see what the difference is. My brother has offered to move in with her and assume her care, but that’s not fair to him and aside from that, I know that will get old real quick. My brother is obsessed with making sure my mom is “happy” even if it means making dumb decisions. He told my husband and I if we put her in a nursing home and “forget about her” he would never speak to us again. How do I convince him that not all nursing homes are horrible? And that our visits would stay the same no matter her location? He has it in his head that if she goes in there she will be dead in a year.
thanks for letting me vent.
Maybe if you show mom and brother how long her money will last based on her monthly expenses of 25,000 a month and how much it would cost for your brothers idea of moving her into a house with 24/7 aides and how long the money will last it will snap them into reality.
After all once the money is gone she will not be able to afford 24/7 help in this place and you are not going to do the in home care for her or give her money to finance laying on her ass all day while people wait on her.
What a shame she did this to herself but she will have to live with those consequences as will your brother for enabling her.
Let them both live in that hell they created for themselves and don't get sucked into trying to fix it or make it better.
I agree with sp19690 that one strategy is to "do the math" for her. The other strategy is for you to do a little research into a reputable local facility to visit and take your own videos of the grounds and inside, and provide the paperwork to present to them both. It will be less expensive than 24/7 privately hired care in the long run. Facilities offer more social opportunities and activities, which is better for her mental health as well.
Finally, you tell your brother there are other, better solutions for your Mom's care and that unlike with your own Mom, your spouse and children are the priority and you are not willing to participate in increasing levels of care orbiting around her when there are other solutions. You don't have to give them any other answer except "no". And then only participate to the level that is acceptable for you. Ignore their threats and whining. Direct any needy calls from your Mom to your brother.
She will probably threaten you with disinheritance at some point. Don't let your life be controlled by this. My Mom and Aunts did the same (for a different reason). When I called their bluff and told them I didn't care about their money, the manipulation stopped and they never threatened it again. FYI I did not get disinherited. In most cases it would require the effort of them getting to an attorney and paying to change the paperwork. It's usually a totally empty threat.
Keep your boundaries to protect your family. You're not wrong at all for doing so.
The mother is 63 years old and is of sound mind. She is still capable of making rational decisions.
If she does not wish for her care to be done in a nursing home and she's paying for it, then it is her decisions.
As for the co-depende relationship she has with her son, do you know these people personally? So, you don't know what their dynamic is.
Also, you make no mention of your mother having dementia or being mentally incompetent. If her mind is still sound, she has a right to decide her care plan and where she will live. She's also paying for it.
I'm sure you want only the best for your mother but really, back off. I totally understand why she doesn't want to go to a nursing home. Do you know what happens to a sound-minded person who gets put into long-term care in a nursing home? They don't stay sound-minded for long.
As for your brother, he's a grown man and can decide for himself if he wants to give moving in with mom and give it a try with hired help. That's his decision not yours.
From what you say here about your brother and the actions your mother has taken to plan for her own care needs, no one has asked you to do anything. Back off before you become the cause of hard feelings and discord in your family.
"Ms itself is rarely fatal, but complications may arise from severe MS, such as chest or bladder infections, or swallowing difficulties. The average life expectancy for people with MS is around 5 to 10 years lower than average, and this gap appears to be getting smaller all the time."
I am surprised at the above because I thought the new treatments were prolonging life. A friend of my daughter gets a bi-yearly shot that costs thousands of dollars. She says she will always have that debt.
Just going to be realistic here. My cousin was diagnosed with MS when she was 50. (Signs were there before diagnosis) She passed at 70, 13 yrs ago from respiratory problems. If your Mom is bedridden, with diabetes and already a health scare, I doubt if she will need to worry about a NH. My cousin stayed as active as she could. She had a great husband which may have been the reason she lived till 70. Her bed sore is caused by being in bed all the time. Having diabetes means that sore will either take a long time to heal or not heal at all. Diabetes causes bad circulation in the legs, Your Mom doesn't move to help with that circulation. So what happens is gangrene starts in the toes so they amputate. But most times, a leg ends up having to be amputated. By not moving around, she may end up having respiratory problems. I bet she is overweight too.
If she still has that sore, an aide is not capable of caring for it. They need to be able to spot any problems, like dead tissue, and they are not medically trained. Mom should have a wound care Nurse checking on it. If not, I would have her Dr. order in home care.
You will not change Mom or your brother. You do not have time to care for her anyway. Your family comes first. I think there is some guilt here on ur part, let it go. Mom has the money and brother has the time and thinks moving in is a good choice. It may work for them. If it doesn't, he can move out and she goes back to f/t aides.
P.S. just reread your post and saw where aides were 20k not 25k. That changes the $348k to $288k and $194k to $134k. Which still
means she saves. Changes the hourly rate on aides to $27 an hr which is still high for a private aide but if agency may not be.
The wound is just about healed. She has been in wound care for over a year. You are right, the diabetes has made it such a slow healing process. That’s another reason she wouldn’t qualify for AL. They will absolutely not accept anyone with any kind of a wound. She has home health from the hospital come to check on her weekly and still has weekly visits to wound care.
The thought that my mom won’t live for much longer has crossed my mind a dozen times a day. I consider just letting her stay where she is, even if it burns her money, she won’t be around for much longer anyway.
My husband and I have chatted about this today after reading all of your comments and have decided we will meet with her and my brother and tell them what our boundaries are, and that mom’s care is up to her. After we have done that we are washing our hands of the situation. Our marriage and children come first. My mother poured herself into caring for her parents towards the end of their lives and expects the same from me and my brother. But my brother and I were both grown when my grandparents passed. And my parents are divorced. So those are definitely different circumstances than my husband and I have.
thank you so much again for your time and your response! You’ve helped me think through a lot!
One thing I would highly recommend for that proactive step, get a list of all the resources a broke, ailing mom would need, like meals on wheels for food delivery, DHHS for Medicaid application, paratransit application through the department of transportation, area on aging, etc.
Then when they call and everything has turned to mush you can say, oh, let me send you these resource contacts I have, they will be able to help you out.
Learning to let people make their own choices, good, bad or indifferent is only one-side of that coin. The other side is letting them deal with the consequences of those choices, without it falling to you in any way, shape or form to bail them out.
You already know how they think this will go if it doesn't work, don't go into agreement that you will be bailing either of them out, decide now to say, sorry, here's the resources that can help you with this situation.
Oh and don't let your brother dump on you. He is choosing to do this, that doesn't obligate you to prop him up in any way, not even to listen to his vents about how hard it is.
Choices have consequences and they are both adults that know what they are getting into.
Best of luck saying no, when the call comes! You can do it!
Unfortunately, you need to step back, become just a visitor with no skin in the game, and let the cards fall where they may. Both your mom and brother have been informed of the realities and they've chosen not to make smart decisions. So be it.
Patathome01
I think it is clear which style you & your brother have!
Not much help to you though..
Is Mom still in charge of lifestyle decisions for herself?
It seems Mom is choosing apartment now then whatever nursing home later. A shortish term view. You have the longer view of choosing a better fit/nicer NH now.
My LO has also chosen apartment now whatever NH in a crises later. I had tried for a long time to find out why. Was it because the current place met every need so well? Fear of change / an unknown place? Or actual cognitive deficits/decline preventing ability to plan. I suspect a combo of all.
What do you think is behind your Mom's decisions?
There are many situations where it takes a crisis to bring things to a head. A crisis in your brother’s approach is a lot less painful than many of the ‘broken bone’ type crises.
"Poor planning on your part does not necessitate an emergency on mine".
(This quote from Bob Carter, but also found in slightly different ways by different people).
Basically if you don't agree to the independent living arrangement (or some other floated idea), tell them plainly:
I don't agree with ABC so I won't help with ABC.
This is how I roll now!
2.Move mom in NH and make peace with him not ever speaking to you again ( I mean it’s unfortunate but, his choice).
What ever your decision, keep your sanity😊, don’t overload your plate…because you have to keep yourself mentally and emotionally balanced( and it seems to me your already there) So continue to keep yourself, your hubby& kids emotionally healthy and thriving!
Wishing you the best outcome💕
Run this past your mother's doc but I agree with you. Being immobile and weight gain and no exercise or reason to get up you can get sedentary and atrophy sets in.
Oftentimes, the assisted livings' don't pick up on bedsores. They just see the outside, Mom knows what day it is and has clean clothes on and is eating.
All of places nowadays are short staffed. You have to be very specific in the needs of the elderly. Let's face it, in the Assisted Livings' (in my opinion it is real estate), when the $$$ goes, you go. It's that simple.
With the elderly, a little thing can become a big thing. A UTI going left untreated. It's hard when you can't all agree on "what do we do with Mom?"
The entire country goes through this. Who is the decision maker and you can also change or undo something but usually everything pretty much comes down to $$$ money.
Maybe you could try it with your brother, bring in services, offer to pitch in.
Keep in mind folks, the one does not want to put Mom in a home should not be punished for this. In other words, don't help him and let's see how long this last.
Make it easy on one another. All carry this heart-wrenching burden that it can last years. The elderly are dependent upon us. If everyone pitches in, any way they can, time, $$$, grocery shopping. This thing called "caregiving" is not even Stephen. But when the dust settles we all want to feel we did the right thing.
I know it's hard because both husband and wife are both working today and years ago my mother and aunts were all home so the caregiving was shared. The men worked and the women were the caregivers.
It's different now but you always "undo" things too if you find this is not the solution for your mother's particular healthcare.
I think deep down you are a nice family but just have different opinions on what is best for Mom. You all love her!
Everyone that gives this kind of advice will be the 1st ones crying when the system goes broke and nobody gets any type of welfare.
Use your money for your care and stop encouraging people to become thieves to get welfare. Sickening!
Several years we all simply gave up trying to help him, b/c, bottom line, he WANTED to be in control of her life. IDK why.
All we other sibs could do was shake out heads and let what was, be.
Brother is only 59 and his health is shot. If he lives 10 more years without changing some major lifestyle choices, he won't be here. A lot of that was due to poor choices and the stress of having mom living with him & his family.
In a way, having mom's care on his plate excused him from having to do more than work PT, sleep 20 hrs a day and eat to the point he's probably 200 lbs overweight. He has a hair trigger temper and nobody wants to deal with that--so, like you, we said our bit and then left him alone.
It's painful when your best intentions and advice are thrown out the door like yesterday's newspaper. I probably felt the failure the most, but all of us felt like he blockaded mom and while he kept her 'safe' she was also housebound & bored. I think she might have died of boredom.
Long story short: you're NOT going to change brother's mind. Don't waste a minute more with him about this. Take care of YOUR family and know that you did your best.
”Not fair to him” — I don’t get that, honestly.
Best wishes.
It's her money. Not yours.
Then, perhaps, you can go visit nursing homes with your brother and then take mom to the best one(s)?
Once that is settled, perhaps a visit with the Elder Law Attorney will put everything in order and you can all coexist in peace.
When your mom and brother mention that they wish you do more than you do, you could reply, - "I wish I could too, but my children and family need me more". Maybe you already say this. Maybe you could leave out the word "more" although it is just.
You're doing the right and healthy thing. I'm sorry your mom didn't focus on her kids. I'm glad you're not like her.
You could compliment you mom by telling her that she and her situation have taught you precious lessons to prepare financially and health wise for your own senior years. For good or bad her decisions are valuable lessons to prepare and planfor when your time comes, and what you've learned is something you can teach your children.
Thank her. Tell her you appreciate learning as well, from this period of your lives, how making thoughtful sound decisions may ensure that end of life memories for your children may well still be bitter sweet, they hopefully will not be a strain and chaotic. You hope that good memories will be shared at your bedside, in addition to lot of hugs, caresses and warm loving smiles.
This is something we all should do.
2. Your mother obviously needs a great deal of care.
3. You are the sane one in the family.
4. Do a bit of research yourself. Find the best place, talk to them --are there even any vacancies, can they deal with her and ALL her health issues, etc. Do they have a policy of keeping patients after they have run out of money?
5. 'Nursing Home" sounds horrible to your mother. It has such a negative connotation. So rephrase it to her so she can still have her dignity. Think on this: she already has been thinking about her future and is scared and angry.
6. Call a family meeting. Go visit on a day when your brother is there. Be persistent. You need to act as a family. Show her some pictures of the BEST place she could move into. Set a date to start packing (right after Thanksgiving?) and a date to move out. Be firm. Be loving.
7. It's not about who is responsible or who is visits the most. Both you and your brother are doing the best you can. You have many responsibilities to your own family and you also have a moral responsibility to your mother.
8. You are a good person.
They will not / have not listened to this young, 36, woman trying.
There is a time to stop - recenter.
The brother and mother have this responsiblity.
The family can hire an investment counselor / a person with long-term health care. They need a professional.
Leave this over-worked daughter alone folks ! Why are so many here making this HER responsibility to 'convince' them . . . when they won't listen to her anyway?
They do not listen to her and she's done all she can. Brother and mother may listen to professionals' advice - certainly in ways they will not listen to this daughter writing us.
Touch Matters
If treatment / care not as needed, call OMBUDSMAN. They work with licensing boards for nursing homes. I've been through this for over a year now.
Take good notes. Document (date and time / person on duty / nurse in charge); write emails to administrator and / or director of nursing. Hold them responsible; ask questions. Document everything.
Touch Matters
Family can hire an outside swallowing specialist to evaluate needs.
If the bed is not raised, this is an issue. Medical staff should know this.
This woman will have more issues that eating/choking concerns.
Touch Matters
On it you compare the cost of care in her current place and in two other more affordable care facilities. Include South Dakota for fun. Indicate also a timeline. Show how long her money will last in each place, and to keep it light say, - I would never suggest this but would you believe it I found out that in S.D. the same care is one quarter the cost? Isn't that wild?
Btw, I'm not suggesting S.D. either. It's just to get their attention although I've Googled "Cost of memory care" in different states. It's an eye opener. Quality is another story. I don't know about that.
In a matter of fact manner, (no emotions, no malice), say that in order to be helpful you added below the chart the name of agencies, (addresses and phone numbers too. Include Medicaid), that will come in handy when the time comes, and that preparation is key for an easy transition. You can add that you believe forewarning the current facility about 6 months before total bankruptcy would probably be best, (as you say this turn to the chart and point to the probable date of the forecasted financial collapse). Continue by telling your brother that it would be most helpful for him to start making calls to social services as well at that time.
Bring a cup of cocoa with you and take a sip after your presentation. You're being practical. If you brother tears up your chart. Make an audible breath in and out, shake your head in pity and calmly pick up the torn piece with the contact info, place it on a table and say - at least keep this.
They may or may not heed any chart.
I presume a person with these financial means may not consider the long picture, financially.
This woman has extended herself enough. They do not want to listen.
This is not this daughter's burden to do any charts. This is what an investment professional and/or attorney can do. Gena
Visiting twice a week with your own family is doing a lot.
Realize that you can do so much - you've stated what you feel is the best way to proceed. If your mother / brother do not listen, there is nothing more you can do. Learn to 'let go.' Focus on your own life / family.
When people have unlimited (or an abundance of) financial resources, they have a lifestyle that doesn't require sound financial thought processes over the long haul. Then add emotions and psychological behavior / life patterns / and family dynamics . . .
If I were young (as you are) with a family, I would focus on myself and them.
In other words, you do what you can and learn to stop - let go - chips fall where they may. If you do not do this, it will eat you up psychologically / exhaust you / take energy away from your own well being and the quality of time/focus/energy you provide to your husband and family. Do Not do this to yourself.
Acknowledge that you have done what you can. THEN...
Examine what your boundaries are?
Have you considered your personal boundaries?
Do you know what they are?
Make them.
Then wish your mother well as she / brother are making decisions she/he wants to make. You apparently do not have any input that actually matters to the point it can change your mom's situation. We all do what we can and then must realize there is nothing more to do ALTHOUGH you can send her (them/family) healing light, love / good energy / good thoughts. And as you 'send' this to them, be aware to give it to you and your family, too.
You are way way way too young to be in the middle of this. Create moments of memories with your husband and family. You cannot get this time back.
Touch Matters
After being in the 'convince' seat myself.. I likened it to sitting up the back of the bus. Was not allowed to drive. No-one heeded my directions.
I did not like where it was headed.. so eventually I stood up & stepped out.
That bus still travelling slowly along the same path. Despite the issues, the farce of independence remains in place - propped up by others.
What did change was me.
I refocused on my own life.