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6 out of 7 siblings have been caring for our father since he became a dialysis patient 5 years ago. He is now 93 years old. Doctors expected our dad to live about 2 to 3 years (if lucky) but he has outperformed their life expectations. All of his savings have been depleted to pay for a home caregiver for 5 years so we had to reduce his care to three times a week supplemented with two of us doing weekly one day weekly visits and weekend two day visits which we all share.


One of our siblings now pays out of pocket for the 3 day caregiving duties. We are not wealthy people. I’m retired and living on a fixed income so I am unable to pay for this caregiver. All of us live about 1 to 2 hours away and dad refuses to move in with any one of us. He is extremely difficult to care for and deal with. We are all tired of caring for him. I think we thought we could manage to care for him for 2 or 3 years but 5 years later there seems to be no end. We’re all exhausted and don’t know what else to do. I’m just fortunate I can share this burden with other siblings. I guess I’m just looking for advice on how to continue caring for someone who essentially was never much of a parent, although still deserves to be looked after regardless of his failure as a parent.


We tried assisted living for 3 months but that was a total failure. He was more at risk there than at home (He’s also diabetic with high blood pressure)


frustrated and burnt out

I think you realistically need to step back here - you've been very generous, but there a limits in terms of simple fairness.  Dad does not have a right to devour your lives because he wants to hold on to the status quo.  Seems a nursing home, on Medicaid, is the answer.  No one is obligated to keep a parent in his home.  When health changes, living arrangements must be flexible in fairness to everyone concerned.  After all, when it comes down to it we are all at risk, everyday.  Destroying your mental/physical health is not a good thing not are you ever required to do so.
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Hadenuff Sep 23, 2018
rovana - thank you. I think you are right. The idea of passing the care on to a home makes me feel like I might be able to breath again. I am so thankful for all the helpful recommendations given to me here on this forum.
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The first key issue is that you don't know who can, or how to make decisions regarding your father's care if he is no longer able to make good decisions for himself. Regardless of anything else, you need to contact an elder care attorney, because you are at risk if you all burn out and can no longer fill in as caregivers for the days without paid assistance.  If you know his attorneys, as we did for my father, you can ask them if he has any documents that provide POA and if so, to whom, and what kind.  If not, you may need to work with the attorney to get POA by declaring him incompetent to make good decisions.  Ask around and get recommendations from others, because, not surprisingly, not all are good at what they do, or even honorable.  But make it your first priority.

From what I can understand, another key issue is that your father can no longer afford the care he needs at home, (and even if he could, he doesn't recognize the need) and your sibling will likely need that money for his/her own care at some point in the future unless he/she wants to burden children or other family members with the same kind of expenses.  Or, what is even more likely is that he/she will run out of money as well.

Your father will need to sell his home to pay for his continued care either at one of your homes (which sounds as though it would be a hardship) or in a facility, which, with his diabetes and dialysis needs, is more than likely a skilled nursing facility, until that money runs out.

Just before that money runs out, the POA would then apply for Medicaid and continue at the same place or another like it until he passes.

In terms of making the decision to discontinue his dialysis for him - you can't, regardless of whether you have POA.  Until he is in the active stage of dying, and clinicians are the ones who can tell whether or not that is the case, dialysis and diabetes treatment, and whatever other treatments he needs to stay alive should be continued.  The only caveat here is that he can choose to discontinue treatment and the POA would need to respect that.

The fact that you are all burned out is a common theme, and I share your pain and exhaustion.  But I can assure you that regardless of your relationship with your father, once he has passed, you will not suffer from the burden of guilt, which would appear to inflict a harsh and grueling emotional pain from which many I know suffer.

And yes, facilities do not care for our loved ones as well as we can - it's well known that they are understaffed and make mistakes.  So, visit often and make unanticipated visits and let the staff know that you are all there (in effect, making it clear that they have auditors and overseers), and try to make good decisions on how many times/ week you visit and balance your own needs.  Killing  or debilitating yourself in a car accident because you fell asleep at the wheel, or having a stroke or heart attack serves no purpose here - not for you, for your family, for your pets, for your friends or especially for your father.

And God bless you.  I have first hand knowledge, and am humbled by you and others like you.  It's very, very, very hard.
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Hadenuff Sep 26, 2018
Princesssf
you are so right! A few of my siblings as well as I proposed that we sell the house to pay for his care in a facility. It’s one of the options we are considering but we’re running into some obstacles.

I think contacting an elder care attorney is an excellent idea! Others on this forum have advised me to do this also. I am now building a “to do “ list to deal with this family issue. Number one on my list is to contact an elder care attorney

thank you again for your wonderful advice, I truly appreciate it.
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Apply for Medicaid long term care and place in a facility on Hospice. Or apply for Hospice and they will provide some assistance.
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Hadenuff Sep 22, 2018
Thank you. I never thought about these options before I’ll look into it
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This may be quite unacceptable, but is it a problem if your father is ‘at risk’? He has had a very long life, and on permanent dialysis his quality of life is not great. Neither is the quality of life for you and your siblings, with this going on and on with no end in sight. It is not uncommon for people on dialysis to make their own decisions that ‘enough is enough’, with death resulting in one to two weeks. Your father may not have that frame of mind, but perhaps you need to look at options without assuming that they must keep him alive at all costs.
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Hadenuff Sep 22, 2018
Really appreciate your response. I’m not sure we have options but I’m interested in what options you are referring to? is it using POA to stop dialysis? we can’t go that route because his overall health is somewhat good, in spite of dialysis, diabetes and high blood pressure. They have been very manageable. My dad is a phenomenon, according to his doctors. At 93 he is like the “ever ready rabbit” I’m sure I’m going to die before he does!

I have asked my father repeatedly if he wants to continue with dialysis and his response changes every time. Some days he says “yes if it’s necessary”, other times he says there’s nothing wrong with him so he doesn’t need to go. He doesn’t realize or understand why he has dialysis 3 times a week. I forgot to mention that He also suffers from mild dementia so it’s pointless to ask him anything.

I will try to look for options but right now I wish this entire ordeal comes to an end soon. I’d like to see dad happy in heaven with mom.

I guess I just want to vent about the living hell of caregiving.
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Hadenuff - Only do as much as you can manage mentally and physically. If that means he has to go into a facility, then that's what it should be. If your dad didn't have any children, or none could care for him, a facility would be where he ended up.

He is literally sucking the life our to his children so he could live. Stop that. Or you'll die before him.

We should lay down our lives for our children, but we should never ask the same in return, because that sacrifice is reserved for our children's children.
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polarbear Sep 23, 2018
2nd para should read: He is literally sucking the life out of his children ,,,
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Once he is in a skilled nursing facility, which is what he will need most likely, you and your siblings will still need to be his advocates; the more family members who see him weekly, the better. You just will all have a break from the 24/7 responsibility. I would suggest you designate one person who handles communication with facility and doctor. Usually that is the POA. Otherwise you will drive the staff and yourselves crazy with communication.
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Hadenuff Sep 26, 2018
Dogparkmomma,

thank you you for your comments. I know exactly what you mean! Skilled facilities need to be monitored at all times to ensure that they are caring for our loved ones appropriately because in the end they are not emotionally invested in our family member. It’s mostly just a job for the staff and a huge profit for their business owners. they aren’t as concerned for our loved ones safety. I’m somewhat cynical about these facilities because of the experience we had when my mother was in one for several months while she was dying.

This time, we plan to do our homework when we select a facility to care for our dad. I have so much research to do!

thank you again.
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Good morning, Hadenuff,
I am one of five siblings and we were totally clueless about the enormity that we were taking on in thinking we could take care of our parents in their home until they passed. We started overseeing basic caregiving when they were in their early 70’s, about 16 years ago, as they needed help with housekeeping and preparing meals. Of course, as we all know, the caregiving increased as their dementia increased and their mobility decreased. One sibling moved in with them when they needed 24/7 care and said she was going to be there for the “duration”. This period lasted for seven years with increasing professional care and all the siblings taking shifts to have two people there at all times. For the last two years we all gave money according to our financial ability to help pay for the professional caregivers. We, too, became exhausted and overwhelmed as we had our own health issues as well, and realized that the “duration” could go on for a very long time as we all broke down from compassion fatigue.

Three years ago, we made a decision to place both of them in a nursing home. The process of placing them took almost two years because we all had a hard time in giving up the dream. We put off doing paperwork, etc. They currently share a room in a nursing home. One of us is there daily advocating for them and just visiting.

Each day in this new normal is different. As time goes by, their care is increasing due to decreased mobility, but they are healthy otherwise. I mourn the fact that this is their life, and it may be so for many years more. I don’t have any friends who have, or had the same experiences as we did trying to care for aging parents. Most of them had parents who died after an illness and they grieved for them. Another’s mother lives with them, but needs little help even at an advanced age.

Caregiving is filled with conflicting emotions. I am happy that my parents are still alive, but grieved at their plight. They have good food, good care, plenty of visitors, lots of activities in which to participate, but it’s not home. It was the right decision for everyone, but it doesn’t mean that it is an easy one.

Hold a meeting with your siblings. Consult an elder care attorney. Talk to your father. Even with dementia, my parents were able to understand a little of the hardships we were going through. Talk to his doctors about his prognosis, and then take action! We let the status quo go on for way too long as our physical and mental health deteriorated because we didn’t want to face facts. And above all, pray! This is a difficult time for everyone involved, but there are options out there.
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Hadenuff Sep 26, 2018
Treeartist,
Thank you for your insightful comments and for sharing your own challenges with elder care. I can’t tell you how much they help! I plan to introduce the subject to my siblings very soon I just need to make sure I have all the necessary information I need to make a successful proposal to all of them. Part of the problem is convincing a couple of them (who hold “old school” opinions about elder care: my brothers feel it’s the daughters duty to care for our dad) as a consequence, it’s the women of the family who are making most of the sacrifice.

again, thank you for your recommendations.
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None of you should be paying for your dad's care out of your own pockets. You (generically) need to be saving for your own retirement. If there isn't enough money, then he will have to go somewhere and the house sold. As far as the AL or NH goes, that is just the way it is. He does not have the right to rob all of you of your lives in order to live like he wants to.
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Hadenuff Sep 27, 2018
Marykathleen - Thank you for your comments. I agree completely. I am hoping that we can come to a decision in the near future about out father’s care.
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Hadenof - I saw your answer to Tree artist - isn't that so easy that the 'boys' say that it is the 'girls' duty to help with the parents - WHAT A BLOODY COP OUT! - that way they don't need to do anything but smile at the funerals & accept the condolences

Wake them up to the news that if they want to cop out then they will need to pay for their cowardness for that's what it is & they won't like being pulled up to today's standards - isn't it easy to pass the buck when you know it won't mean you have to pony up anything - DO NOT AGREE TO ANYTHING THAT IS UNEQUAL TO EITHER SEX because your brothers have started to prep the sisters to bear the load

FYI ... many years ago when I said that our son would be taught how to clean a fridge on the weekend ... then my husband said 'that's not a boys job' to which I replied 'he eats out of that fridge so he learns to clean it' [FYI - y daughter-in-law loooovvvveeess me] - after over 39 year of marriage I may have changed the sheets on our bed by myself once because I don't sleep in it by myself & that takes less than 3 minutes with 2 of us together - is a prime example of 2 people doing a job together makes it 1/3 [or less] of the time

If you let them then your bros will take advantage of the girls while feathering their retirement nests while the girls take a cut in pay because of all their time off to help with mom & dad - boys can't breastfeed & give birth while girls can't stand to pee otherwise both sexes are the same [did you notice that men are already behind?] - if you let them away with it then don't complain but give them an awakening to the new really of today - good luck
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Hadenuff Sep 27, 2018
moecam - LOL, thank you! you hit the nail right on the head. Our brothers grew up never having to clean house, make beds or assist with any “feminine” chores because both our parents held “old school” notions about the role of men and women. I’m happy to say that a couple of months ago one of our brothers is helping out a lot more but only when he was told how much my sister was spending for our dad’s care. I think he finally felt guilty! Rather than helping out with dollars he takes care of dad once a week. That’s a little progress.

What i I find most interesting about the family dynamic is that they (brothers) find it easier to put their own needs ahead of dad’s. Their first consideration is always their own family’s welfare which I completely understand. However, It’s not fare they should have the luxury to walk away whenever they wish and leave us with all the responsibility. We’ve decided that our male siblings have no decision making power over what happens to our father. If they protest then they can take over his care.
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Gee--I am 81 and envy those who can easily end their lives by stopping dialysis or insulin ( I had an aunt who stopped dialysis when her dog died, and my son's mother in law apparently "forgot" her insulin when she was diagnosed with cancer). I carry one of the genes (ApoE4) for late onset Alzheimer's and I am worried that I won't want to or won't be able to end my life when I develop dementia. Right now I am healthy and am fully mobile, still traveling around the world. But I always buy trip insurance now!
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MaryKathleen Sep 26, 2018
Boy, I agree with you. Don't have the gene that I know of, but I don't want to be a burden to my family. I am 84. My problem is hubby is 86 with the beginning stages of Alzheimer's. I want to live long enough to take care of him so family doesn't have to. This doesn't mean take care at home necessarily, just take care of.
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