I was fully prepared to be much more hands on helping my parents, but they have always had our youngest sister living with them, in their home, and they are a codependent mess. Sister has NO use for any help, would really prefer not to have visitors. She is a hermit type, made worse by covid times, and wants full control. So her three older sisters gave it to her, because our parents set her up to be their savior, to keep them home, no matter what, and they keep each other’s secrets.
The four sisters got along pretty good for a few years, but things have a way of falling apart, when siblings are treated unequally, unfairly and no communication is possible. It’s a mess, and I was able to let go of all of it, mostly, this past couple months. Because our sister never left home, and began her own adult life, is now 49, never supported herself, independently, so there is no level playing ground. Hell, she doesn’t even bother to give medical info in a hospital update. We get… “mom’s doing great”. Wow, no medical information at all. I stopped caring as much as I used to, cause there is no changing the three of them.
If one sibling is whining they are the “only one” that helps, they might want to get honest about why that is, and if HELP is being welcomed. In the case of my sister, she wants us to drink the kool aid that she is all mom and dad need. And our parents allow it, cause she lets them do as they please. Which is how they raised their youngest daughter, 14 years younger than me, the oldest, enabling her all the way.
So no, in our family we had two oldest daughters, sick to our stomachs with guilt, that we were not seeing and helping our folks enough, until we realized we’re guilting ourselves, and need to stop. We are not allowed to even clean off the dining room table. The third daughter, the horrid one, regales the youngest with all her thanks and kudos, for what a great job the caregiver is doing, thank you, thank you, and you can feel her relief, she is not doing any of it. No guilt there.
Being the oldest of four daughters has been tough my whole life, but never more so, than the past five years. The two oldest will never cause a problem, will not fight, and let our caregiver sister do as she pleases, cause our parents gave her the power.
When it falls apart, we will still help, as our age permits. But us two oldest are close to 62 and me, 64, so hands on care, nope. We will find folks to take care of our parents, what our youngest sister will work against, with all her being. Hope she outlasts our parents, cause her health is not being considered here, but she wants no respite. She’s not that healthy, she’s our mom’s twin. This is hell tbh. Memory loss disease, poor health, and stubborn elders are tough to handle, even as I love them immensely. The Serenity prayer helps me a great deal.
This is the whole thing...caregiving is not a one size fits all cookie cutter approach.
The expression all families are the same is also true, however, what is your reason for asking this?
If it's why aren't my siblings helping out then if they refuse you have to build a team outside of the family. Don't waste your time knocking on a door that doesn't open.
I have yet to figure out how and why people react the way they do. For example, I know firsthand of people who have led a privileged life where the father grew up the hard way, gave his son everything he never had and the kid doesn't reciprocate when dad needs his help.
On the other hand I know of parents who weren't the best and the kids never left the parents side, took care of them around the clock.
Everyone's money situation is different, or for that matter, can change. You need to study your parent's health insurance and find out what is available, especially when things progress and more services are needed.
A trip to a free one-hour Elder Attorney and phone call to hospital Social Worker is recommended.
The Durable Medical Equipment through health insurance needs to be studied for items that will save you out of pocket.
Go on the portal for all doctors, it's much faster.
Don't refuse any help from family but seldom is it Even Steven. People are out-of-State today, remarried, stepchildren, personalities that don't get along or simply those who do not want to pitch in. Accept that and make a plan.
You didn't really say directly why you are asking this question. We could be of more help to you if you wish to share more.
My sister lives near Dad, who is in a memory facility but still requires a lot of interaction (aside from regular visits) due to all LBS and delusions. She does the lion's share of caring for him. I live a day's drive away and have POA. I take care of all that entails, as well as helping with delusions over the phone with him on a daily basis . When my sister needs a break, I go down and take care of things there. It works for us, and no one resents what they need to do. Dad needs us now, and we are glad to have the chance to help him.
Is my sibling coming over 5 hours a month considered 'sharing'? I've lived w/my parents for 9 yrs, dad died in 2016. When our mom was hospitalized in 2021 and came home needing care my sister just assumed everything was my responsibility. She had 24hr caregivers for about 6 weeks. My mother is a 'different' person now but requires minimal care.
I used to, eight years when ai quit working to help, and because my bosses had made my work impossible. My sister has chosen to have no help for all those years, except me making and delivering my parents meals every other day, for three years.
NOW….age 63, no longer interested in hands on help. I’ll assess each possible ask, if there are any in the future.
Tjmila: I moved in with my mother from out of state to care for her. My sole sibling, a brother said "He wouldn't do the caregiving" when it was his turn.
I live almost 1600 miles away from my then 64 year year old brother and his 22 year old daughter--daddy's girl--lived near him. I suspected he had early onset dementia since it's in our family. The Alzheimer's Association told me to get POA and a diagnosis, which turned out to be glioblastoma. My niece and I were a team--we were both POA and coordinated things for his care. I was on the phone a lot and set him up for food stamps, Medicaid, Social Security retirement, Medicare, found doctors, and she was on the ground, taking him to the attorney's office, doctor, grocery shopping, and letting me know how he was doing. When it came time for paperwork to set up cremation and hospice, she signed the paperwork while I was on speakerphone. I got him into assisted living and went to clear out his apartment with my niece's help. I found an excellent nursing facility and an amazing hospice. They appreciated that we were so involved in his care. Ultimately I made six trips including one for his celebration of life. An additional concern to me was helping my niece deal with her dad's passing. She and I both agreed there was nothing we regretted in his care. It was a horrible situation but all things considered it couldn't have gone any smoother.
Hello. I'm the youngest of 4 girls and mom lives with me. She gave me the home years ago because she was tired of dealing with the cost and maintainance of it as a single mom. The house is a reverse mortgage and requires a LOT of work. Now she can't live alone so she lives with me and my 2 kids (16 and 20). I am an experienced CNA with a history in home healthcare so it makes sense for it to be me to care her. However, my other sisters rarely see her now so they help with the bills. It's frustrating and exhausting but..... It's an honor to be a part of her final chapter. She's only 80 and in good physical health, it's the mental decline that's a challenge. Hang in there. She appreciates you.
We “shared”. The other “caregiver” moved 1,000 miles away and wrote one check, once a month, and visited 2 or 3 times a year.
I visited 3 or 4 times a week, bought everything she needed whenever I could, celebrated holidays with her, dealt with her care staff, made the decisions about her care, became her designated SS payee, and paid all of her other bills.
We were “equal” POAs, and will receive equal amounts from her estate.
I did this because I loved her, and because in the last 2 weeks before she died, I told her I loved her and she summoned up the strength to respond “I love you too”. (The last words she ever uttered).
Fair? I think so. “Caregiver” will get money. I got much MUCH MORE.
Yes my brother and I share the caregiving and have a pretty good system. It made it possible for us to take everything on for quite a while and now that she needs more actual hands on we have a caregiver as well but still share the responsibilities. Why do you ask?
I was the sole caregiver for about a decade and, if you think shared caregiving doesn’t work: try being the lone workhorse. It does NOT work, because it can’t for very long. (Fortunately Mom had her own living space & some meals were provided.) But medicine, med. appts. groceries, trips anywhere, errands were on one set of shoulders. As an only daughter, I was the only one expected to do anything - for far too long. I had to retire early to cope with it. Brothers lived elsewhere, and never came in to offer help for this. One did help on other ways. steering me toward the moves described. This picture in these times is changing a little, if still much too slowly. My advice is, always: decide what you can handle, let Mom & family know “ here is what I can do.” The rest must be paid for by all ( or Mom if she’d can afford it) or done by them or outside caregivers.
My sisters have scheduled days when I work and support my decisions. I run things by them but one person in charge works best for me. They are my essential and reliable support staff. Truly they make my life and my mothers life better. The end result is that my mother is happy every day (maybe not all day).
I guess on some level yes we are "sharegivers". The vast majority of the hands on day to day care falls to my SIL/BIL because they moved in with FIL a number of years ago (they fell on hard times of their own and needed help, at the time he was fairly independent and any time he needed anything we usually assisted because they lived further away.) When they moved in a lot changed. He stopped doing anything for himself and became dependent on them for nearly everything. As a result their temporary stay turned permanent (unless things line up to move him to a skilled nursing facility) As far as caregiving goes, as I mentioned they do most of the day to day by virtue of living with him. We are about an hour away. We assist with any appointments (because he is now a two person transfer), are the "interventionists" as far as warfare negotiations (long story), technical support, issue fixers, problem solvers, scam de-escalators, and back up care if they can't be there. We also all have agreed that we don't deal with him until we've all talked. We deal with things as a united front. Dh is the POA and executor of his will. SIL is back up POA but essentially since the POA is not in play anyway we all have HIPAA clearance for him. And we all talk regularly about his care and issues. The only way shared caregiving works in my opinion is if everyone is on the same page and communicate regularly. The only place we aren't on the exact same page is that DH and I feel that he is really at the point now where his needs are too much for them, they have their own medical needs now and it is wearing on them. And there is only so much we can help them. We would prefer to find a skilled nursing facility for him. And they absolutely agree 100%. But they have not to date made a plan to move out and as long as they live there he will absolutely never have a need to leave. The VA has outfitted his home for his mobility issues and he is content to let them wait on him hand and foot. And until they hit their wall with his care we cannot do anything to change the situation. So if you are considering sharing care, you absolutely have to recognize that the load will rarely be as balanced as you would like, there will probably be disputes and you need to agree up front on how you will resolve them and you have to decide how much you personally are willing to give. Because if you give all, and are the solution all the time, over time no one will look for any other solutions and you may find that you aren't sharing so much as carrying the full weight of it all.
I had no other siblings, so when my brother came into problems it was only me. I honestly cannot imagine there being another sibling, because no matter who is best at what, I would think it would lead to disagreements about when to place in in facility care, who does the hands on and who manages the money, how to manage the money, and etc. Are you thinking of doing this in future, or are you doing this now, Tjmila? And are you running into problems or is it working well for you? Would love to hear if you have input for us. And welcome to the Forum.
The four sisters got along pretty good for a few years, but things have a way of falling apart, when siblings are treated unequally, unfairly and no communication is possible. It’s a mess, and I was able to let go of all of it, mostly, this past couple months. Because our sister never left home, and began her own adult life, is now 49, never supported herself, independently, so there is no level playing ground. Hell, she doesn’t even bother to give medical info in a hospital update. We get… “mom’s doing great”. Wow, no medical information at all. I stopped caring as much as I used to, cause there is no changing the three of them.
If one sibling is whining they are the “only one” that helps, they might want to get honest about why that is, and if HELP is being welcomed. In the case of my sister, she wants us to drink the kool aid that she is all mom and dad need. And our parents allow it, cause she lets them do as they please. Which is how they raised their youngest daughter, 14 years younger than me, the oldest, enabling her all the way.
So no, in our family we had two oldest daughters, sick to our stomachs with guilt, that we were not seeing and helping our folks enough, until we realized we’re guilting ourselves, and need to stop. We are not allowed to even clean off the dining room table. The third daughter, the horrid one, regales the youngest with all her thanks and kudos, for what a great job the caregiver is doing, thank you, thank you, and you can feel her relief, she is not doing any of it. No guilt there.
Being the oldest of four daughters has been tough my whole life, but never more so, than the past five years. The two oldest will never cause a problem, will not fight, and let our caregiver sister do as she pleases, cause our parents gave her the power.
When it falls apart, we will still help, as our age permits. But us two oldest are close to 62 and me, 64, so hands on care, nope. We will find folks to take care of our parents, what our youngest sister will work against, with all her being. Hope she outlasts our parents, cause her health is not being considered here, but she wants no respite. She’s not that healthy, she’s our mom’s twin. This is hell tbh. Memory loss disease, poor health, and stubborn elders are tough to handle, even as I love them immensely. The Serenity prayer helps me a great deal.
This is the whole thing...caregiving is not a one size fits all cookie cutter approach.
The expression all families are the same is also true, however, what is your reason for asking this?
If it's why aren't my siblings helping out then if they refuse you have to build a team outside of the family. Don't waste your time knocking on a door that doesn't open.
I have yet to figure out how and why people react the way they do. For example, I know firsthand of people who have led a privileged life where the father grew up the hard way, gave his son everything he never had and the kid doesn't reciprocate when dad needs his help.
On the other hand I know of parents who weren't the best and the kids never left the parents side, took care of them around the clock.
Everyone's money situation is different, or for that matter, can change. You need to study your parent's health insurance and find out what is available, especially when things progress and more services are needed.
A trip to a free one-hour Elder Attorney and phone call to hospital Social Worker is recommended.
The Durable Medical Equipment through health insurance needs to be studied for items that will save you out of pocket.
Go on the portal for all doctors, it's much faster.
Don't refuse any help from family but seldom is it Even Steven. People are out-of-State today, remarried, stepchildren, personalities that don't get along or simply those who do not want to pitch in. Accept that and make a plan.
You didn't really say directly why you are asking this question. We could be of more help to you if you wish to share more.
'sharing'?
I've lived w/my parents for 9 yrs, dad died in 2016. When our mom was hospitalized in 2021 and came home needing care my sister just assumed everything was my responsibility. She had 24hr caregivers for about 6 weeks. My mother is a 'different' person now but requires minimal care.
NOW….age 63, no longer interested in hands on help. I’ll assess each possible ask, if there are any in the future.
He hauls them around and I take care of the business end, works for us.
I visited 3 or 4 times a week, bought everything she needed whenever I could, celebrated holidays with her, dealt with her care staff, made the decisions about her care, became her designated SS payee, and paid all of her other bills.
We were “equal” POAs, and will receive equal amounts from her estate.
I did this because I loved her, and because in the last 2 weeks before she died, I told her I loved her and she summoned up the strength to respond “I love you too”. (The last words she ever uttered).
Fair? I think so. “Caregiver” will get money. I got much MUCH MORE.
This picture in these times is changing a little, if still much too slowly. My advice is, always: decide what you can handle, let Mom & family know “ here is what I can do.” The rest must be paid for by all ( or Mom if she’d can afford it) or done by them or outside caregivers.
When they moved in a lot changed. He stopped doing anything for himself and became dependent on them for nearly everything. As a result their temporary stay turned permanent (unless things line up to move him to a skilled nursing facility)
As far as caregiving goes, as I mentioned they do most of the day to day by virtue of living with him. We are about an hour away. We assist with any appointments (because he is now a two person transfer), are the "interventionists" as far as warfare negotiations (long story), technical support, issue fixers, problem solvers, scam de-escalators, and back up care if they can't be there.
We also all have agreed that we don't deal with him until we've all talked. We deal with things as a united front. Dh is the POA and executor of his will. SIL is back up POA but essentially since the POA is not in play anyway we all have HIPAA clearance for him. And we all talk regularly about his care and issues.
The only way shared caregiving works in my opinion is if everyone is on the same page and communicate regularly. The only place we aren't on the exact same page is that DH and I feel that he is really at the point now where his needs are too much for them, they have their own medical needs now and it is wearing on them. And there is only so much we can help them. We would prefer to find a skilled nursing facility for him. And they absolutely agree 100%. But they have not to date made a plan to move out and as long as they live there he will absolutely never have a need to leave. The VA has outfitted his home for his mobility issues and he is content to let them wait on him hand and foot. And until they hit their wall with his care we cannot do anything to change the situation.
So if you are considering sharing care, you absolutely have to recognize that the load will rarely be as balanced as you would like, there will probably be disputes and you need to agree up front on how you will resolve them and you have to decide how much you personally are willing to give. Because if you give all, and are the solution all the time, over time no one will look for any other solutions and you may find that you aren't sharing so much as carrying the full weight of it all.
Are you thinking of doing this in future, or are you doing this now, Tjmila? And are you running into problems or is it working well for you? Would love to hear if you have input for us. And welcome to the Forum.
What do you want to know about it?
Each person in a family has their own thoughts on being a caregiver and their own lives to lead.
Of course, in an ideal world the caregiver duties would be shared but it isn’t always possible.
Can you share a bit more about your situation?