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I am their primary caregiver and my two siblings can’t cope. My ailing parents want to live in their own house in their final stages of their lives, even going as far as trying to make them wards of state to force into nursing home care.
It is so difficult when sibs disagree and work cross purposes with one another, BTDT.
What is their main concern - the quality of care your parents are getting or the cost of it? Or is it that they find it too hard work to share in the caregiving?
Can you tell us a little more about the situation?
More info would be very helpful. You are in the same situation that I was. I ended up quitting the caregiving, returned to work and restarted my career. This was primarily due to harassment by the twisted sisters. I was tired of it.
The care mom and hubby received from me was excellent, nobody disagreed with that. But twisted sissies decided that facility care would be cheaper, it definitely was not, so moved them both.
At home cost was about $7,000.00 month, very cheap by home care standards, facility it was not uncommon for the costs to exceed $18,000.00 a month for the two of them. One in assisted living, mom in memory care. That cost was primarily mom's as she became so confused and agitated that she was a danger to herself and others. She often needed a personal, self-pay caregiver not included in the facility cost.
When your two siblings made the application to have your parents made wards of state, what reasons did your siblings give for the application?
Clearly the court didn't agree! - but knowing what your siblings said about your parents would help us to understand where they're coming from, and then maybe we can think about how to get them to change their view and stop being pests.
It's hard to look at our aging parents and NOT feel like we need to "solve the problem"--although they are content and safe. (I hope that's the situation here)
Your sisters likely just would feel better if mom and dad were in a place that is prepared for all contingencies, not just you caring for them. BUT--if mom and dad can make this decision on their own then they should certainly be allowed to.
Also, ,most parents do want to live out their lives in their own home, on their own terms. Many times that's exactly what happens (we don't hear about them on these boards)...we only hear the dramas.
I agree, some more information would be good. Perhaps the sisters see things you don't see. My sibs and I don't agree on Mom's care, but in the end, she makes her own decisions, pretty much. And brother has her tightly clenched in his fist--and I don't care to wrangle with him.
You nailed it. And it isn't just our parents, it's ALL of us...well, most of us and more of us, from my perspective...who want to make our own decisions to live our lives where we want to be. A change in living arrangements is not necessarily a good thing, and if the parents have any funds, even from selling a home, it will all go toward their care. Plus there is that little medicaid clause about an adult child caregiving for two years where the house is safe...but that is an elder law attorney issues to be dealt with. If the load is getting heavy there may be many resources the city or county provides to assist...
I have a “gut feeling” response but I’m gonna save it for now I’m case I’m wrong - and as others have asked, a little more information would be helpful.
For me - specifically, if your parents remain in their home - what level of participation is expected from your siblings? What has been their contribution to date as far as sharing expenses and hands-on caregiving?
Lastly - being honest and realistic, how independent are your parents and what is the expected prognosis and/or expected rate of decline over the next several months?
I would think a frank discussion with your siblings would be the first thing to do, and, most importantly, it needs to be a judgement-free opportunity for all of you to air your concerns. As someone else said, maybe they are seeing things that you aren't that raises concern for them, either about your parents or you, and maybe they haven't felt like they can talk to you about it. I would also suggest, if they are able, to then have a discussion with your siblings and your parents. They need to know if their wishes are having major consequences on the rest of the family and may rethink their decision. At the very least, if you all can feel heard, even if nothing changes, I would hope that would help the your relationships and make it easier if, in the future, things need to be revisited.
When you say your two siblings can't cope, what is it they can't cope with? Often the problem is keeping ailing parents in their own house requires a great deal of work and sacrifice on the behalf of the children.
If you are primary caregiver, mom and dad can make own decisions, and you are not EXPECTING contributions from your siblings - I don't see any issues.
My InLaws expect to remain in their house. Fine - they can make their decisions. BUT - they won't pay for anything and as they get older, more and more of the maintenance/work falls in my BIL and SIL. BIL and SIL were helped financially by my inlaws several times in their younger years, so they don't feel they can say "NO" even though it is starting to really wear on them. My InLaws have a main house and vacation house (that they haven't been to in two years). My BIL and SIL are not only expected to do repairs and major cleaning on the main house, but to go the the vacation house twice a month to check on it - shovel snow - clean gutters, clean it etc.
All are angry and me and my DH - we live halfway across the country and have declined expectations that we will fly out several times a year to participate. InLaws can pay for help - too cheap. BIL and SIL haven't the strength to say no. Tensions that are just going to build but my DH and I are pretty strong.
I was going to make a post today about my experience with my elderly mother remaining in her home. She is 93 yrs old. My dad passed away almost 7 yrs ago. If I had to do this all over again, I would tell you to try and urge them to go into assisted living together. This way they age together and have the necessary help needed as health conditions decline. And they will! My mother outlived my dad, but remaining in her own home has led to isolation. She did all right for a few years, but now she is starting to have anxiety about small things and she is becoming very hard to deal with. If she had gone into asst living, she would have had many activities and many friends to share her time with. Being a 93 yr old in a working class neighborhood, leaves little friendship opportunities as all neighbors have families and kids that keep them busy. My mother is a fish out of water. All her old friends and neighbors are gone, as well as trusted relatives who once encompassed her life.
Of course she will never go willingly now and if assessed, she would probably be more eligible for a nursing home even though she still has some skills. It is getting more and more difficult for me to care for her and she is not manageable on some days. The anxiety is too much for her and she will not take medication. Her world is so small now. Having the proper asst living or nursing home to care for her now is 1000 x’s better than what she is living now.
Please try to visualize the near future, knowing your parent’s personalities and health conditions. It doesn’t get easier. Physically my mother is okay, but her mental health is getting worse due to the isolation and not having friends for companionship. Believe me when I tell you, they may outlive every one in their life now. All it takes is for one of your in-laws to have a health condition that would force them to drop out of caring for your parents to care for themselves. If I had the hindsight to do over, I would say go into a good facility (my mother had the money at the time), and let them enjoy the company of others their age. They think they will live forever at the level they are at - but it just isn’t so.
I just forwarded your comments to my husband and his siblings. We're trying to help their almost 88 year old parents. Their mom has brittle diabetes and some type dementia (don't know if she was diagnosed with Alzheimer's or another type dementia—parents don't share much about health). Their dad has some dementia (probably mostly age-related) and tends to "hold up" in his office on his computer—I think it's his way to escape. He also has narcolepsy and can fall asleep almost anywhere at anytime. Neither should be driving!
My parents are both deceased and both of them lived their last years in Assisted Living and then nursing care facility. My mom moved separately from my dad, due to a hip fracture and Parkinson's. Dad didn't want to move, so he stayed in his home (until he could no longer legally drive and started having his own set of health issues). Both of my parents were in the same nursing care facility until mom passed, and I think the time they spent with each other there was helpful to both of them. Definitely having other people around who are caring and nurturing along with being able to make some friendships was extremely beneficial for my dad (who had cancer). For us kids, it allowed us to lay our heads on the pillow at night and rest assured that they were being cared for at a time when we could not physically, emotionally, or spiritually care for them.
Your advice was very helpful and I appreciate your willingness to share it.
There really is not enough information here for others to know how to provide appropriate answers to your dilemma. Information such as: who is POA, do your parents have any special health needs, are they mobile, is there a possibility of in-home health care, are you getting paid for your services, do your parents have a written legal document regarding their care, are your siblings concerned about any type of abuse? Having been POA for both of my parents, and currently assisting a relative with the care of his parents, I have seen both "sides of the coin" so to speak. My parents had a Will and Trust, they had a POA/Trustee set in place, they had care plans in place, and the university where they had spent their lives had a wonderful plan to care for its retirees—this provided assisted living when my folks needed it and nursing care when they were ready for that.
My relative's parents were not prepared for old age. They had no monies set aside for extra care expenses, were determined to live in unsafe, unhealthy conditions, and have multiple medical issues. When they could no longer legally drive, everything became even more obvious and DSS took over. While none of this has been the best case scenario, they do have a fairly decent Assisted Living facility where they have been placed (after family pressured to get them moved from a very sub-par facility), they have food, medicines, activities (if they choose), warmth in a cold winter, and some visitors who would not have wanted to visit them in their home.
All of the "stories" of peoples' lives have more than one player and more than one side. If you can better explain the story behind your parents' wishes and yours and your siblings views, it would be greatly helpful.
Are you the POA? If so do not worry about your siblings attempts to make them ward of the state, unless neglect, abuse, and mismanagement of their finances can be proven. Sometime siblings will create problems, based on non-related issues. Home care is what they want, and if you can provide that safely, it is beneficial for your parents to 1. remain together 2. In their home. In many cases the bark is worse than bite, don't allow their education, or secular work, influence you to doubt that you are making the right choices, for your parents, at their wish.
I can tell you First hand as a pro at this sort of situation, God has a way of Intervening. My sister and I were always trying to get my parents off the God forsaken "Mountain" but they had always fought us both on it. One day, Mom got very ill and ended up in the hospital and died. Dad is now alone up there but with Winter so bad and my sister not being able to get up there every day, He is looking into either a Skilled Nursing Home or an Apartment. Unless the parents are out of their heads, being their Ward of the State would need a Court deal.
Oh, this is such a common quandary. The elderly parents who do not want to leave their home because it's their comfort zone. But something happens to the elder when they can no longer keep house, live alone and a myriad of other things. It becomes dangerous and scary for them. Many times the decision process about where mom and dad will live falls on one adult child---for whatever reason --- I could go on for "A Month of Sundays" describing the reasonings. If your siblings "can't cope," then so be it. It's sad, but you cannot change people's possible wrong thinking patterns.
I don't really have enough detail about your particular situation, but here is something to possibly consider. My wife has dementia and it's progressing fairly rapidly. We are both 70 years old and I'm retired and at home and still mentally and physically fit. We currently have many safety devices (hand rails, walkers, bathtub chair, lift chair to the second floor, etc.), but my wife, who is prone to falling, is having a tougher time even with the devices. Since we have a 1/2 bath on the first floor, I'm seriously considering sectioning off a chunk of our large livingroom and converting it to our bedroom. Then the stairs and the lift will no longer be a concern. If this works out, it's less stress for me and less danger to my wife, who has been having trouble operating the lift and sometimes tries to get off it midway up or down which could be catastrophic. In short, you can't change what's going on with your parents, but you may be able to adjust their home environment somewhat and they can still live there safely. Good luck!
It's hard to give more than a general answer since more information is needed. But, you say your parents are ailing - ailing with what? And what level of care does that ailing require for each of them? Most elderly have a strong desire to live out their life at home. Sometimes it's possible, sometimes it isn't due to the severity of illness/dementia, because it's not safe or because the cost of caregiving, both financially and emotionally, is too high. Of course you take their wants into consideration, but you also have to look at the entire situation objectively. Because it can be a very long road.
Are your siblings unable to cope or are they drawing a boundary? Family dynamics come to the fore in caregiving situations. The truth is that not every family member wants to or is able to care for their aging/ailing parents or family member. That may be painful for parents to hear and understand.
You said you are their primary caregiver. Are you their healthcare and financial POA as well? If so, your siblings can't take any action. But they can refuse to help physically and financially. Can you have a meeting with your siblings to better understand their position? If so, I recommend it. And then have a sit-down with your parents.
You’re getting good advice from others. Who has the power of attorney? Hopefully you do. If they can afford to stay in their home great. If they can’t then have them move in with a family member would be the first choice over a nursing facility. Also what ailing are you referring to? If they can’t care for them selves you have to bring in Care or you have to do it or you have to take them home with you. Social Services will force them into a nursing home if they cannot care for them selves or if they’re too unstable to walk in May hurt fall and hurt themselves. Also what kind of ailing are you referring to? If they can’t care for them selves you have to bring in Caregivers or you have to do it or you have to take them home with you. Social Services will force them into a nursing home if they cannot care for themselves, if they’re too unstable to walk and may hurt fall and hurt themselves and you have no one to come in Or they can’t live with someone else.
They did that with us. The Mrs. knew she needed someone to help stabilize her when she walked, yet she was a stubborn woman, and when the caregiver was else where in the house she got up to walk and fell and broke her hip. She said she just wanted to do it herself. While in the rehab, Social Services said either there’s 24 hour care now or she was going to have to go to a facility. They would not even let her come home without that guarantee there would be 24 hour care in the home in writing. Good luck.
My mom is a very sane rational person. At 81 she was alone and living in a rough section on town. She decided to sell her house and moved to an independent apartment in a retirement community. She still drove and had a good mind. She went to meals and sat at a table with 3 other persons for two meals a day and talked with many others everyday. At 87, she fell and could no longer drive but she had access to a bus that went to Kroger and Walmart every week and a van that would take her to dr. appt. She in now 94 and enjoys seeing friends every time she steps out her door. She still lives independently but if she needed to go to AL, it's right next door and she has many friends there as they move from IL to AL as needed. I guess what I'm trying to say is . . . we are conditioned to believe that elderly will be happiest in their on homes. And sometimes they are. But as neighborhoods change, driving skills fade, etc., sometimes an IL or AL is not just necessary but a very good step toward a safe and (after a period of adjustment) contented life.
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What is their main concern - the quality of care your parents are getting or the cost of it? Or is it that they find it too hard work to share in the caregiving?
Can you tell us a little more about the situation?
The care mom and hubby received from me was excellent, nobody disagreed with that. But twisted sissies decided that facility care would be cheaper, it definitely was not, so moved them both.
At home cost was about $7,000.00 month, very cheap by home care standards, facility it was not uncommon for the costs to exceed $18,000.00 a month for the two of them. One in assisted living, mom in memory care. That cost was primarily mom's as she became so confused and agitated that she was a danger to herself and others. She often needed a personal, self-pay caregiver not included in the facility cost.
Clearly the court didn't agree! - but knowing what your siblings said about your parents would help us to understand where they're coming from, and then maybe we can think about how to get them to change their view and stop being pests.
Your sisters likely just would feel better if mom and dad were in a place that is prepared for all contingencies, not just you caring for them. BUT--if mom and dad can make this decision on their own then they should certainly be allowed to.
Also, ,most parents do want to live out their lives in their own home, on their own terms. Many times that's exactly what happens (we don't hear about them on these boards)...we only hear the dramas.
I agree, some more information would be good. Perhaps the sisters see things you don't see. My sibs and I don't agree on Mom's care, but in the end, she makes her own decisions, pretty much. And brother has her tightly clenched in his fist--and I don't care to wrangle with him.
Are you a sole caregiver to two dementia patients?
For me - specifically, if your parents remain in their home - what level of participation is expected from your siblings? What has been their contribution to date as far as sharing expenses and hands-on caregiving?
Lastly - being honest and realistic, how independent are your parents and what is the expected prognosis and/or expected rate of decline over the next several months?
I would also suggest, if they are able, to then have a discussion with your siblings and your parents. They need to know if their wishes are having major consequences on the rest of the family and may rethink their decision.
At the very least, if you all can feel heard, even if nothing changes, I would hope that would help the your relationships and make it easier if, in the future, things need to be revisited.
If you are primary caregiver, mom and dad can make own decisions, and you are not EXPECTING contributions from your siblings - I don't see any issues.
My InLaws expect to remain in their house. Fine - they can make their decisions. BUT - they won't pay for anything and as they get older, more and more of the maintenance/work falls in my BIL and SIL. BIL and SIL were helped financially by my inlaws several times in their younger years, so they don't feel they can say "NO" even though it is starting to really wear on them. My InLaws have a main house and vacation house (that they haven't been to in two years). My BIL and SIL are not only expected to do repairs and major cleaning on the main house, but to go the the vacation house twice a month to check on it - shovel snow - clean gutters, clean it etc.
All are angry and me and my DH - we live halfway across the country and have declined expectations that we will fly out several times a year to participate. InLaws can pay for help - too cheap. BIL and SIL haven't the strength to say no. Tensions that are just going to build but my DH and I are pretty strong.
Of course she will never go willingly now and if assessed, she would probably be more eligible for a nursing home even though she still has some skills. It is getting more and more difficult for me to care for her and she is not manageable on some days. The anxiety is too much for her and she will not take medication. Her world is so small now. Having the proper asst living or nursing home to care for her now is 1000 x’s better than what she is living now.
Please try to visualize the near future, knowing your parent’s personalities and health conditions. It doesn’t get easier. Physically my mother is okay, but her mental health is getting worse due to the isolation and not having friends for companionship. Believe me when I tell you, they may outlive every one in their life now. All it takes is for one of your in-laws to have a health condition that would force them to drop out of caring for your parents to care for themselves. If I had the hindsight to do over, I would say go into a good facility (my mother had the money at the time), and let them enjoy the company of others their age. They think they will live forever at the level they are at - but it just isn’t so.
My parents are both deceased and both of them lived their last years in Assisted Living and then nursing care facility. My mom moved separately from my dad, due to a hip fracture and Parkinson's. Dad didn't want to move, so he stayed in his home (until he could no longer legally drive and started having his own set of health issues). Both of my parents were in the same nursing care facility until mom passed, and I think the time they spent with each other there was helpful to both of them. Definitely having other people around who are caring and nurturing along with being able to make some friendships was extremely beneficial for my dad (who had cancer). For us kids, it allowed us to lay our heads on the pillow at night and rest assured that they were being cared for at a time when we could not physically, emotionally, or spiritually care for them.
Your advice was very helpful and I appreciate your willingness to share it.
My relative's parents were not prepared for old age. They had no monies set aside for extra care expenses, were determined to live in unsafe, unhealthy conditions, and have multiple medical issues. When they could no longer legally drive, everything became even more obvious and DSS took over. While none of this has been the best case scenario, they do have a fairly decent Assisted Living facility where they have been placed (after family pressured to get them moved from a very sub-par facility), they have food, medicines, activities (if they choose), warmth in a cold winter, and some visitors who would not have wanted to visit them in their home.
All of the "stories" of peoples' lives have more than one player and more than one side. If you can better explain the story behind your parents' wishes and yours and your siblings views, it would be greatly helpful.
Good Luck
Cynthia
Are your siblings unable to cope or are they drawing a boundary? Family dynamics come to the fore in caregiving situations. The truth is that not every family member wants to or is able to care for their aging/ailing parents or family member. That may be painful for parents to hear and understand.
You said you are their primary caregiver. Are you their healthcare and financial POA as well? If so, your siblings can't take any action. But they can refuse to help physically and financially. Can you have a meeting with your siblings to better understand their position? If so, I recommend it. And then have a sit-down with your parents.
They did that with us. The Mrs. knew she needed someone to help stabilize her when she walked, yet she was a stubborn woman, and when the caregiver was else where in the house she got up to walk and fell and broke her hip. She said she just wanted to do it herself. While in the rehab, Social Services said either there’s 24 hour care now or she was going to have to go to a facility. They would not even let her come home without that guarantee there would be 24 hour care in the home in writing. Good luck.
I guess what I'm trying to say is . . . we are conditioned to believe that elderly will be happiest in their on homes. And sometimes they are. But as neighborhoods change, driving skills fade, etc., sometimes an IL or AL is not just necessary but a very good step toward a safe and (after a period of adjustment) contented life.