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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.
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.
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.
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?
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?
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.
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.
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 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.
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.
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
B.
APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
C.
APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
D.
If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
E.
This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
F.
You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
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.
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.
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?
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?
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.
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.
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.
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.
Good Luck
Cynthia
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