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.
"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!
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.
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.
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.