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!
Clearly, your dad needs help. You can find help / assistance.
That you would need to uproot your children from their school would be / is a serious consideration.
We do not know if this 'can work' as you ask.
It is something you need to weigh the pros and cons yourself.
Take out emotion of GUILT (be aware of how / why you decide as you do / are). Be realistic in your decision making.
If you make a decision based on emotions, it may steer you in non-workable decision. If it were me, as best I can put myself in your position, I would hire a medical social worker or someone highly experienced in care management for the specific needs - and have them keep you in the loop on a daily / regular basis. The situation will continue to change / decline. I know you know this. I'd recommend starting with the least obstructive change (find someone to manage / hire caregivers / work the land (as needed), do carpentry/hand-person work)... and then see how that goes.
I wouldn't jump to moving or if you lean that direction, consider all your options and the pros and cons.
Gena Galenski / Touch Matters
She was one of those unfortunate people that had a TIA after each shot and booster, and even a flu shot. Six total. Doctor said her sister had to stop taking her in for them, or a stroke will occur. She was told she could not go back to her house after the last one, a year and a half ago.
Mom is now late stage Alzheimer’s. She tripped two weeks ago, fell into her dresser, and broke her hip, resulting in a partial hip replacement. She is up and back to being the Energizer Bunny. I flew my daughter, who lives in the Yukon, down to help out with Grandma. She is flying home today, after two weeks. I believe fully that grandchildren seeing and helping with aging grandparents is so important. Developing empathy early, and seeing compassion in their parents is amazing to their development. They need to see the value in the relatives who’ve loved them more than themselves. To know that these things can happen to each and every one of us, and how important it is to know that when you are sick, and suffering, that they are also loved and not alone.
All days are hard at this point, but Alzheimer’s is a terminal illness, and deserves the care and love that anyone with cancer would receive.
Kudos to your dad for managing to this point. To you as well, for considering this endeavour. Your children will remember, will consider their parents, in their later years, and understand what they are going through.
If your dad is still doing for your mom, you would just need to work out what everybody's responsibilities are, and where your dad would most appreciate your help.
Kids are not frightened by old people and strange behaviour, they are far more accepting than adults. Explaining all questions they have fixes whatever may come up.
Your children being there will slow down your mom’s decline. Children are like magic to folks in these situations.
you will cry, and you will get angry, and you will learn to not blame yourself for the feelings you have. Your mom won’t either. You will have to remember her each day for the woman she was before. She still is, just somewhere harder to find. You will be there for her to live and then die with dignity.
Rent your house, if you can.
As for your brother….we have a 33 year old, very disabled daughter at home with us.
we manage.
The situation is temporary, and the end of it is her dying, so I’ll appreciate whatever time I have with her, and cry when it’s hard.
The slow goodbye is the worst, but so much worse for them.
If your husband is supportive, you will be fine.
It will be the hardest thing you’ve ever had to do, on a daily basis.
When all of you need help with grandma, accept help. We are at this point and just beginning to arrange for a bit of in-home care.
The property sounds wonderful, and you would definitely be able to retreat outside, with the kids, for endless fun, when things are tough in the house, or just on your mind.
Good luck, in whatever your choice is.
Beautiful that you are even considering it, even if you can’t in the end.
You have a 33 year old daughter, almost the same age as my daughter. The OP's children are toddlers, a little younger than my grandchildren. How on earth can she give hands on care to her mum while looking after 2 very young children?
Someone would suffer.
As for children growing up with empathy, it really does depend.
It's good for children to be around people of different ages and levels of capacity. They can grow up more understanding and caring. However, it's not good when they see that their needs aren't met because their mum has to see to their grandparents' needs first. Or when they see a grandparent with dementia being aggressive, or seeing them distressed every day. That's bad for a child's mental health.
Lastly, your mum is with you in your home, so you're not at risk of losing it for your mum's care. The OP is thinking of selling her home even though they wouldn't be able to afford buying in that area again. If her parents' home is needed to pay for her parents' and brother's care, she could lose everything. And so would her children.
No, you should not leave your home to move your family into your parents' home. Nor should you be a hands on carer.
It might sound fine on paper, and there's always a possibility that it could work out fine, but there's an even bigger possibility that things could go downhill fast.
71 is still young. Your life could be taken over by caregiving - firstly for your mum, then later for your dad. Perhaps, for another twenty odd years.
What about your children who need you? They should come first.
Stop helping your father to look after your mum and help him to arrange for carers to come in to your mum.
Similarly, help your dad to see that it's time to make alternative arrangements for your brother. He won't be able to look after him and your mum; plus, as someone else said, it's better for your brother to transition to a residential placement while his parents are still alive and can support him. You can't take on his care, either.
If your parents don't have money, then they should sell and downsize, so that they are able to pay for the ongoing care that they will need. I'm sorry, but things are only going to get worse. It's better to accept that now, so you can deal with it.
If your parents do have the money and don't yet need to sell up, then your children will have some nice memories of visiting grandparents and spending time outdoors, or showing off their new swimming skills to Grandma and Grandpa.
My mum is 76 and old before her time, following a severe stroke, and she now has dementia. My grandchildren, a little older than your children, like visiting their great grandparents, but feel uncomfortable and sometimes scared when Mum's having a bad day. If they lived with her, they would witness far more bad days.
Finally, what if you sell your home and can't afford to buy another, and all the money tied up in your parents' home is required to pay for theirs and your brother's care? What will happen to your family then?
I know that some families have no choice, but it sounds like you do.
Don't feel guilty about not doing as much hands on care for your parents as they did for you; instead, think about how guilty you would feel if you didn't provide the same care for your children as you had from your parents. Be a parent to them.
Now I'm helping my mom (my parents were divorced over 50 years ago) who is in a different part of the state, 131 miles one way. I'm going in to the bi-weekly drives again for the weekends. Yet I don't want her living with me and my husband. Not only do I just not see that ever working for personality reasons, but all her doctors and friends are local to her, and my husband and I have a life of our own and jobs here. We don't want to give that up, nor should we have to. We have no kids, so need to focus on saving all the money we can while we still have jobs, so we can support ourselves in our retirement.
Consider yourself EXTREMELY fortunate that you live only 20 miles away from them. You can visit them every weekend, and even maybe a weekend night if you wish...living so close is a blessing compared to what I've had to do.
Get your dad's buy off, then buy and install wi-fi cameras in their house if it would help with assuring yourself everyone is moving about and well. Help them coordinate care and services, but do NOT move in with them. The stress will take a toll on your life, health and marriage, and the time you spend caring for them, means less time caring for your young kids who need you during their formative years.
Best wishes.
Talk with your spouse about whether or not he/she is willing to share in caregiving and the needs of your birth family. Talk about the wants/needs your father desires help with. Discuss how your family life will change with the addition of mom, dad, and your brother.
As for your home, you can decide to rent it out for a year. If living with your folks does not work, you can move back into your home.
Everyone in this form can recite what can, and will, most assuredly burn you out. Only you can decide if all the difficulties it could bring.... outweigh the joys of being together. Your kids could also be learning compassion and patience. In closer proximity, you can "orchestrate" but delegate the "day-to-day" care to agency folks. Good luck with whatever plan makes your life journey complete.
You have two little children. This situation may go on for another 20 years. Do you really want them to have to give up playtime, then some of their homework time, and give up any sports or extra-curricular activities in school, opportunities for jobs and job training, and even dates, in order to be an unpaid nurse's aid for your aging parents? Some people with dementia, especially if it includes uncontrolled blood sugar, can be absolutely NASTY!
Will your husband be content not only being a slave, watching his children be deprived of anything like a normal childhood, but also having a perpetually exhausted wife?
I was a child in such a situation, and it has adversely affected my life - starting with educational opportunities.
It isn’t my fault. Because I thought I was super-woman and could fly.
It takes forever to find a way out.
—-
I walk down the same street.
There is a deep hole in the sidewalk.
I pretend I don’t see it.
Because my husband is an attorney.
I fall in again.
I can’t believe I am in the same place.
But, it isn’t my fault.
It still takes me a long time to get out.
—-
I walk down the same street.
There is a deep hole in the sidewalk.
I see it is there. But I was still curious.
I still fall in. It’s a habit.
My eyes are open.
I know where I am.
I was warned about the hole.
It is my fault. I get out immediately.
—-
I walk down the same street.
There is a deep hole in the sidewalk.
I walk around it.
Then, I walk down a different street.
I love this message. Many on us have needed to hear these words at one point or another.
I feel like even if you did have a plan B , which you don't, the guilt of moving back out would be hard. And I'm sure the stress will most likely cause tension in your marriage.
Your smart to be considering and weighing all your options, instead of just jumping into this.
If it was me, knowing what I know now, after taking care of my mom for years, but not living with her. I would not do it.
Best of luck to you
Sometimes, these caregiving plans boil down to the caregiving logistics.
Who is going to sit there and supervise your toddlers every second they are by the pool?
Who will be there for them when you are called away for an incident occurring with your brother or either parent?
Is the pool fenced?
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.
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!)
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.
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.
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.
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.
Did they ever ask you if you would want to do this?
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.