My mom (72) has several health issues, many related to her long time uncontrolled diabetes and related vision issues. She also has a recently discovered heart issue that will require surgery. But perhaps the most concerning, is she has been experiencing some significant cognitive decline. We suspect dementia of some type, but she has not been tested yet. She had a significant fall a year ago, breaking her thumb and almost completely blowing out her shoulder, requiring surgery. This was partly caused because she confused my home with our next door neighbor’s. A place she had been to almost daily for a year at that point.
My dad (71) is reasonably healthy, and recently retired to assist in her care and many medical appointments as she cannot safely drive anymore. A complicating factor is my brother (38) who has Down Syndrome, also lives with them full time. He does not require a ton of hands on care, but is definitely not able to be alone for too long, can’t cook for himself, needs help with hygiene, etc.
My parents have a beautiful property with many acres of land, and as a bonus, a separate but connected living space where they would most likely begin to live as it is all on one floor. This would leave the upstairs of the main living space available to my family, myself, husband, and two daughters (ages 3 and 1). We would intend to share the main kitchen and living area, though the area where my parents would be does have its own kitchen and living area, just much smaller.
I feel the need to be there to help more permanently. Between the upkeep of the property, my mom, and my brother, just seems likes like a lot for my dad to handle on his own. We currently live about 20 minutes away, but working full time with two toddlers, feels like it might as well be an hour or more. I’ve always been so close with my family, and I know they would do and have done anything for me. I feel like it is the least I can do to be there for them, as they were for their parents. I want to spend as much time as I can with my mom, for my kids to really know her, and I know she would love to be around them more. Though of course my mom is not the same as she once was, and it is hard to navigate that.
However, I know first hand the toll that caretaking can take on a family, especially from a child’s perspective. I am scared of the toll it could take on my marriage and my kids. I am also sad to give up our home. While it was never my intended forever home, it is the only home our kids have known. I also don’t think we could afford to buy in this area again should we decide that living with my parents will not work.
On the plus side, my parents’ property is beautiful, and could give my children several opportunities we could not afford to provide for them on our own. They would have much more space to be outside, help to take care of animals, a pool, etc. I just don’t know if the benefits outweigh the costs, or if I will be able to live with myself if I am not there to help my family.
Has anyone else experienced this type of living arrangement? Can it work? Once my kids start school, I would hate to move them, so I’m feeling pressure to decide sooner rather than later. Any advice would be appreciated! Thank you!
Stick around and read the forum, my friend. You will learn why it's a very bad idea to live in a multi generational home and expect to preserve relationships that were once close. It rarely works out. What sounds good in theory often winds up being so awful in reality that it's mind boggling.
Wishing you the best of luck with all of this.
If your parents' property is as large as you say, I'm hoping they have the resources to hire in caregivers. Your kids and spouse are your priority.
What you should do is to stay on the forum here for one month reading. Simply reading.
I think that will let you know that moving in would be a dreadful mistake and would be irresponsible in my humble opinion for your children. They are your first obligation.
As bad as you imagine things could get?
It will get ever so much worse.
Again, welcome to this Forum.
Please read. And read. And read. See the broken and angry lives, the near breakdowns, the tragic outcomes.
After one month of that, I trust you to make your own grownup decisions for your own lives.
On top of that, it isn't a good environment for kids when granny is ever declining mentally. They will not understand. Are you prepared for her wandering? Angry outbursts? Poopy diapers? Feeding her? A home with invalids is not easy. You are not a professional caregiver, and your kids don't deserve that.
Then there's the Downs syndrome brother. How much of his care are you willing to assume as your parents become more frail?
Pool, animals, nice property - they are nothing when it means giving up your privacy as a family. Where is your husband in this? I can't believe he'd be willing to put up with it, even if he says he will. You two have NO idea. NONE.
Help your birth family - notice I don't say your family, because that's now your own nuclear family with your kids - help mom and dad find help to live in with them. Or find a placement for them and a group home for brother. That's the best way to help them.
I wish you luck on this journey - but please, for your sake, don't complicate it unnecessarily.
Suggest your parents arrange a Social Worker to help them plan. A SW with both elder disability experience would be best. Go along. This can be how you help.
'Aging in place' is a nice idea. It can work for some time but also be very harder in non-urban areas, due to challenges obtaining visiting aides & home help services.
While I can certainly understand your wish to help, you need to be realistic about your own responsibilities as a parent & ensure your children come first.
There are many ways to help.
*** help FIND the pathway ***
(Not carry everyone & everything on your own shoulders)
"There are many ways to help.
*** help FIND the pathway ***
(Not carry everyone & everything on your own shoulders)"
The pool and all the things you are excited for will not override everything else, your children will carry their childhood into adulthood.
You do understand that your parents could live for another 20+ years...my mother is 99.
If they can no longer manage independently, they will have to make their choice as to what their next step is.
Your priority should be the well-being of your family.
Read around here, you have no idea what you and your family will be in for, don't do it.
https://www.agingcare.com/topics/30/burnout
Family members get themselves in trouble by romanticizing the multi-generational caregiving scenario, like on The Waltons. They never showed Gramma Walton's incontinence (and ingratitude), or Grampa Walton cussing and saying vulgar things in front of the yungun's because his filter was completely gone.
A regular contributor on this forum (I think it's JoAnn29) often advises to "help them find a way, don't be the way" to solve their care solutions.
I came back this a.m. to read responses to your post.
They are excellent.
But what I want to let you know is that, long as some of us are here and well as we know and love one another, we SELDOM all agree.
When we DO AGREE I read that as a serious warning.
Don't do this.
Her youngest sister was born with Down’s syndrome. Her sister was very active when she was young and fairly independent. She remained living with her parents.
My friend was very close to her sister and helped care her for. When her parents died she moved her sister into her home. It became overwhelming for her.
Her sister ended up developing dementia in her 50’s and required hospice care. She took advantage of hospice volunteers and helpers from ARC. She died at home which was my friend’s desire.
A neighbor of mine has a son who has Down’s syndrome. My neighbors found a group home for him to live. He is able to be fairly independent. He participates in certain chores in the home and is able to work in the kitchen at a nearby restaurant. He is a younger man in his 20’s.
I know that you are close with your family. I was always close to my parents too. Things change when we live together. It may start off okay for a while, but it’s really hard to share a home as an adult with your family.
My mom moved in with us. I loved her very much but trust me, a relationship changes when we are trying to care for them and raise our own family too.
I would not move in with your parents.
Wishing you and your family all the best.
From what you describe here, your parents have plenty of money. If they don't have actual cash assets they own enough property to be rich. They have a big place as you say with a 'separate but connected living space' sounds like that could easily become servants quarters. They could move in a married couple to become caregivers to them and your brother. Or a pair of caregivers who would live there for free and look after everyone and the property. Of course they would have to receive wages and time off in addition to living in a nice place for free. If mom and dad sell some of the many acres of property, paying for some domestic staff won't be a problem.
You and your young family should not move in with them. That will be a huge mistake.
Or even build a tiny house on it as a friend who had CADISIL and needed care did when she moved to AK. Her caregiver gets to live in it rent free.
However--all 3 of the people requiring care NOW are just going to get 'worse'. You'll find that the level of care they might need NOW will just double down each year, over time.
My mother and dad moved in with my YB 25 years ago. Dad lived there for 11 years before he passed, mom (with help) was able to care for him. Then she began to age out and there were 14 years that my YB was the primary CG for her.
Mom passed 18 months ago. My brother loved my mom very much, but he has said, many many times --"We should have had them in Assisted Living rather than move them here."
It was HIS choice to do this. They had a separate apartment, but were still very much a part of the day-to-day of YB's family.
Please don't do this. It's really only a temporary fix. Look way down the line--not just at what you'd be doing NOW, but what would be expected in 10 years. Or 30? Your brother could live a full life span.
If your folks have funds and such--get them the care they need when they need it. Don't let YOU be the only answer to every problem. That's what my YB did and he regrets those years he cannot get back.
My neighbor has a son who has Down Syndrome. Neighbor is a doctor. Their son lives in a group home and visits from time to time. He usually can't wait to get back to his "real" home where his friends are.
Something to think about.
I would have liked to have been a decent SIL to my husband's sister and done some nice things with her but I was too busy maintaining boundaries because I did not want it assumed that she would be living with my husband and me after my mother and father in law were gone.
As for your brother, parents had 38 years to look for alternative arrangements which many do as they know one day they won’t be able to take care of mentally challenged child.
Whose idea was it to move, did Dad ask you?
Because you are female and should help? For 20 years possibly?
What if it does not work, as it usually does not, read endless stories on this forum which often begin with how it was great for a few months, maybe a year and then becomes a nightmare.
What if it does not work and you won’t be able to get into housing market?
Bringing up young children, working and taking care of aging parents with potentially increasing needs does not work.
Parents have enough assets to make alternative arrangements.
Did they ever ask you if you would want to do this?
They also have higher rates of leukemia. My cousin who has Down’s syndrome spent time in St. Jude’s children hospital with leukemia. Thank God, Ali went into remission and is doing well.
Please know that your caregiving duties will not end when your mom dies. They will not end when dad dies...you may have another 20, 30 years ahead of you caring for your brother unless other arrangements are made. And I doubt at this point he would do well in a Group Home.
Is your husband up for that as well?
And another thought...
What are YOU giving up work wise?
What is your husband giving up work wise?
Will you be able to continue to work where you are? Will your husband be able to continue to work where he is? Or will you both be looking for another job? How will this impact you both in 20 or 30 years?
Are you going to get paid for caregiving? YOU SHOULD BE.
At what point are you not going to be able to care for mom, dad, brother? What is the plan then?
You say.....will I be able to live with myself if I am not there to help my family....well your husband and children are also your family. You need to make a decision that is in their best interest.
I did want to clarify a couple of points. No one has asked us to do this, and my parents are willing and able to hire help or do whatever is necessary in the coming years to aid in their care. I know I am absolutely not equipped to deal with advanced dementia, and would not subject my kids to that on a daily basis. I suppose I thought I could provide some logistical help, and basic care for my brother if my parents are away at appointments or my mom recovering from surgery, etc as needed, in this transitional time. Then as needs increase, care arrangements would adjust accordingly.
I also have an aunt with Down Syndrome, another family member is her guardian, and my husband works in an estate planning/trust law practice. I’m definitely familiar with guardianships/groups homes, etc. My aunt lived with my grandparents until they had both passed and then transitioned to a group home. We all agree that was not ideal, and want my brother to be settled before then if at all possible. My aunt is beginning some cognitive decline and other mental health issues in her 50s, and she was much more independent than my brother is able to be. The group home has been good overall, but does not handle any medical care. Her guardian has had to handle everything, which has been very difficult. Steps are already being taken to move forward on another living situation for my brother eventually.
I have known, and my husband understands and supports, that because I don’t have any other siblings, I will shoulder more responsibility as my parents age, and for my brother long term. I do not look forward to being in that position of course, but I know it has to be me in some capacity.
You are wise to seek feedback from a caregiver forum. You will hear various opinions and receive support.
It isn’t always easy to make plans for the future.
It sounds as if you know how to set boundaries, so that you won’t end up in a situation that you’re in over your head.
I wish you and your family well.
If a person's mind is made up there's no stopping them and usually have to learn the hard way. I just hope their hard way doesn't get too hard.
Using this forum as a sounding board to validate what you have in your head is a great way to figure some things from a different angle that you may not have thought of. (and we are less expensive and easier to get to than a therapist!)
Ive been caretaking since I was 10 years old and just keep adding as my mother was diagnosed Parkinson’s
PBS did a documentary on stress, every year you care for a disabled family member you age 4 years. They included living in a dangerous area, their example was Richmond CA near where we lived also.
I can tell you our family has disintegrated trying to accomplish this even with round the clock full time caregivers at this point.
Folks experience burn out after 2 years, your toddlers need you first.
I had a hard upbringing being a caregiver at 10 and my parents couldn’t parent me bc they too were caregiving.