93 year old dad still on dialysis 5 years later, how do we continue caring for him?

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

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.

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.

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!

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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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.

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.

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.

A POA would not grant anyone the right to force a person to stop dialysis when said person is able to speak for themselves. If let's say your father was in a coma and couldn't speak for himself stopping dialysis could be similar to "pulling the plug". However, a POA is set up when the person is still of sound mind and body. Even if it had been though it wouldn't be as simple as dictating the patient had lived "long enough " , let's just stop dialysis. If the patient is alive, conscious, talking, has some awareness, it's highly unlikely a judge would authorize stopping dialysis against patient's wishes.

That being said, it might be a good idea to look into getting him a capacity assessment. If he's found to be capable then encouraging him to make some legal decisions while he still can would be helpful for all concerned. IF he's found to not have the capacity to make decisions for himself there is a legal process by which you or one or more of your siblings could be appointed by the court to make decisions for him. Which ultimately means you decide where he lives, not him. Unpleasant? Necessary? Probably. I think in the US (I'm Canadian)what I'm describing is called a Conservatorship. It usually costs money to pay legal fees. However, you might be able to find a community based service for seniors and/or disabled people that would connect you to resources to get a lawyer willing to work for free (some firms do a certain amount of probono work) or at a discount.

I think the issue of capacity to make his own decisions is a good first step if he refuses to accept the reality of things.

I know that the stress of forcing things on your father is not what anyone in the situation wants. Not you or siblings and certainly not him. Unless he's completely off his rocker, somewhere deep down he has to know the predicament that he's in and that the status quo is not going to work anymore.

I wish I had a better answer for you. We do our "duty" but it's completely natural to feel at our wit's end. It's a lot like role reversal I have found and it's the hardest job I've ever had. In my parents it's like I have two teenagers. Rebellious ones at times. It is really good you have your siblings to share the caregiving with but it's still far from easy. If it's any solace, you are not alone in your struggles. I hope you find a solution that at least makes things a little easier, if not peachy.

If AL was not helpful, then, I would consider that he needs a higher level of care. Is he competent to decide where he will live? If not, I'd have an assessment to see just what he does need and then find out what he qualifies for.

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.

Apply for Medicaid long term care and place in a facility on Hospice. Or apply for Hospice and they will provide some assistance.