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Acquaintances of mine have a Down Syndrome adult child. She was a beautiful precious little girl, and from the beginning in their small town, she was brought up to think she'd be independent some day. School, shelters, workshops, etc. They had two younger children as well. Now "Marcy" (not her real name) lives in a group home in a larger town 35 miles from them. Marcy, about age 40, has a job and friends her age. They go to the mall, to parks, to performances. Parents post her pictures on their Facebook page. It is so much better than if they'd kept her bound to home and parents.

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.
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Hothouseflower May 10, 2024
It is responsible thing to do and is an act of love bestowed to the entire family when parents of developmentally disabled children make placement plans that do not include the exploitation of their daughters in law as has happened in my life experience. I wish my in laws did not just assume that I and my BIL's wife were the solutions to their problem. I did not want to look at my SIL as a problem but my in laws chose not to make any provisions for her future and by doing that destroyed the relationships between my husband and his brother. The family is destroyed. And this situation very nearly destroyed our marriage. We came close to divorcing.

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.
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It sounds, on 'paper' to be a good plan.

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.
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Reply to Midkid58
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Here's an idea. Why don't your parents sell a few of the many acres of beautiful land they own and raise some funds that can help them, your brother, and to give their grandkids a good life?

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.
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AlvaDeer May 6, 2024
I LOVE this.
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.
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A very good friend of mine is the oldest daughter in her very large Italian family.

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.
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No, no no no. Absolutely not.
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Reply to LoopyLoo
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Parenthelp,
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.
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Do not move in with them. Also you need to start preparing your brother for a time when your parents are not around anymore to care for him. Talk to your local social services and ARC group about available living situations and support. You may have to get him on a waiting list for a group home. It will be better if he goes through this transition while your parents are still around for support.
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Geaton777 May 6, 2024
The OP can set up her brother in a group home with a court-appointed guardian. We had one for my SFIL and we had a very good experience with this.
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On this forum there's a Care Topic devoted to the subject of Burnout. Please read the articles and then scroll down to the bottom to read questions (and responses) posted by people just like yourself.

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.
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Fawnby May 6, 2024
Gramps Walton used to take his pants off and scream obscenities to the kids! And Grandma couldn’t remember their names! Everyone else said “goodnight, John Boy,” but Grandma said “good night, Urso.” The family never found out who Urso was but Mary Elizabeth thinks it must have been her Cherokee lover when Grandma, then known as Mary Martha, was but 15 years old.
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NO!!!!!!!!!!!!!!!!
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AlvaDeer May 6, 2024
My first inclination was to say "no. just no". But we all know I can NEVER write three words only, even when they, in fact, are the best response.
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There is no plus side, your children will be exposed to things they really shouldn't be exposed to on a regular basis. Watching an old dementia laden person get worse is a very negative, depressing situation.

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.
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If your Mother is moving from independant to dependant, your Father needs to make the decision about how to proceed. Stay & get help in or downsize. Your Father also needs a good long term care plan for your brother.

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)
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AlvaDeer May 6, 2024
I love what you say here:

"There are many ways to help.
*** help FIND the pathway ***
(Not carry everyone & everything on your own shoulders)"
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The benefits do not outweigh the costs. I see no benefit whatever in increasing your work load in a home that is not your own and where your parents will definitely decline and become even more your responsibility. You think that's good, that you should assume it. One thing you've left out of this is your time for your kids, who deserve you more than your parents do. Your parents have lived most of their lives. Your kids are just beginning. There is more to raising kids than you can imagine at this point, trust me.

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.
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No, you should not move in.
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.
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Another vote for no, do not move in with them. Please read the hundreds of other posts on this forum from loving and well-meaning adult children who could never imagine how stressful and limiting hands-on caregiving eventually is. At some point if your Dad started to decline it would be even more challenging.

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.
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No, Dad can care for Mom. Her uncontrolled diabetes may be why she is having cognitive problems. Maybe its time to find a place for brother. Your parents are aging. There are group homes and programs for your brother. I have disabled nephew. I have been able to find him people so I can back off at age 74. I just no longer want to deal with his problems. He has a coordinator that now does that. Big burden off my shoulders.
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Do not move in with your parents. Your father is caring for mom and his son, and if more help is needed, he can HIRE outside help. Stay the daughter here instead of the resentful caregiver who laments the day she moved in and wrecked her life, her marriage, her autonomy, and most importantly, her children's lives. Your mother, with dementia, will only get more difficult to manage as the disease progresses. Living apart, YOU get to decide if and when the young grandchildren see grandma. Living together, they get to see ALL of grandma's moods and histrionics, whether you want them to or not. My gown children were horrified at my mother's behavior with advanced dementia. Fortunately, she lived in Memory Care Assisted Living so they could pick and choose when to see her and suffer afterwards.

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.
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