My parents situation has continued to decline. My father was admitted to hospital three weeks ago due to super high potassium as his dialysis center wasn't able to give him treatment after the weekend because puss was coming out of his fistula because it got infected. 13 days later, he was released from the hospital. Three days after that, he had a pulsatile aneurysm in his dialysis arm. It burst and he lost between a liter to a liter and a half of blood all over the house. He was admitted back to hospital, surgery was done, and now he's at home again with a negative pressure vacuum attached to his arm that he has to carry around.
Meanwhile, my mother's dementia has progressed to where she doesn't know where the bathroom is, gets up, goes in other room, and urinates on the floor. She won't wear diapers, and we can only get her showered once a week for $200 because she won't shower for me or the family.
Things are much worse due to my father's ongoing anxiety and his need to go for rides. He pays caretakers for 25 hours a week to just drive him around and around the county with my mom. At the end of the month, this turns out to be somewhere between $5,000 and $6,000. That's almost as much as it would cost to have him in assisted living with round the clock care.
The problem is, it's in the will and the trust that he does not want to go into a facility and wants to die at home. I don't have an issue carrying out what he wants, but this driving all hours every day and then after the caretakers drop him off, still wanting to be driven around, is literally driving my brother up the wall. He lives with them and is basically their primary care provider.
Also, my father exhibits very strong desires to have somebody always constantly within his line of sight. Just being in the house with him is not enough. He literally wants us to all sit down in the living room with him and just be there during all his waking hours. If we get up to go into the kitchen, he's calling and yelling for us to come back. If we go to do the laundry, he's yelling for us to come back and sit down. If we go outside to have a word with one another, he's yelling for us to come back in the house and sit down with him. Also, when I am trying to go through a process that requires some thinking, like how to download some forms or something, he's constantly interrupting me so I can't think. And when I get upset with him, he gets all emotional and feels hurt and goes away like a dog with his tail between his legs acting sad.
We have a social worker coming Tuesday to discuss what to do next. 24-hour round-the-clock care at home is going to be super expensive and is not really all that necessary. The main problems are when my mother urinates on herself and needs to be changed immediately, as well as not being able to have eyes on her ourselves to do that. Plus, she doesn't cooperate and she hits, punches, kicks, and screams, "Help, help, call the police, call the police!" when it's shower/wipe down time. Physical therapy is going to start for my father to keep him at least able to transfer from wheelchair to bed to toilet because if he cannot do those two things, then that greatly changes what we need to do at home for him.
Between the two of them, my brother and I are literally pulling our hair out and don't know what to do. We need our boundaries respected and our rights to having time to ourselves. He wants every minute of our lives to be about sitting around him or driving him.
I need to return to my husband as it's been two weeks and go back to three days every week like I was before, but I feel guilty about ALL this. I feel guilty that I don't have patience and I'm angry all the time, guilty because ultimately this is going to cost a ton of money to do stuff that a lot of people would probably think my brother and I should be doing, and guilty about the appointment with the social worker. Rationally, I should not feel guilty about any of this, I don't think, but I do.
My mom is is an AL place and calls me every day (2-3) times a day and is angry that I "put" her there. Medically and due to multiple falls, medication errors (on her part), and multiple hospitalizations with brain trauma, she has to be there for 24/7 care. I visit almost every day to help her and to navigate the system.
I pray for all caregivers! Let's be supportive and not tell others how to feel.
Dr. Kim Deering
The problems of aging aren't caused by you.
They can't be fixed by you.
You aren't responsible and cannot be for the grief and losses of aging. You aren't a god and you aren't a Saint and you have no powers of interventions.
Therefore guilt is inappropriate.
People often mistake their own grief, helplessness, frustration for guilt. Using the wrong word makes the situation seem abnormal and assigns fault. Words have great power. Using the world one does great harm and is also self harming imho.
Next time he goes to the hospital, when they start talking about discharge, use the magic words: unsafe discharge and don’t take either one of them home.
And in your case, you already know that both your parents now require WAY too much care to be left at home. Your mother needs to be in a memory care unit, and your father in a skilled nursing facility as he is WAY beyond being able to be in assisted living.
And you have nothing to feel guilty about as you are trying to do the work of 4-5 people, and here you but one person.
Instead it should be your father who should be feeling guilty for putting his children through all of this when he knows deep down that he needs to placed in skilled nursing and his wife in memory care.
Your husband, marriage and any children/grandchildren should be coming WAY before any help you're giving your parents. They are your priorities, NOT your parents.
So go home to your husband and stay there. Tell your father that you will no longer continue to do any care for he and your mom and that he will either have to hire 24/7 help for the 2 of them or he will have to look into appropriate facilities for them both.
You honestly don't owe your parents a darn thing, in case you didn't know that.
I wish you well in putting your big girl panties on and taking your life back and making yourself, your husband and marriage your top priorities.
If brother refuses to have a different plan than what is going on now, then it does all fall back on him by default.
And of course, funkygrandma is correct; it doesn't matter WHAT is written in the will about all of this. Doesn't want to go into in-facility care? Fine, then. Don't. But no one will take care of you, if they are smart, if you choose not to.
I am sorry, but guilt is entirely inappropriate. Guilt is for felons. Guilt REQUIRES causation and a refusal to cure something. You didn't cause this, and you cannot stop this, but your solution of trying to be all the solutions to it is simply not going to work.
As I said. This can't be done. It isn't sustainable. I hope that whoever is the POA in this situation will address it. If not, I would be back by my husband and family yesterday.
If your parents wish to live at home then they should hire a nurse manager to arrange their 24/7 care. While their funds sustain this (and it won't be long unless they're billionaires) then they can stay at home and be cared for. When that isn't possible they will have to go into care. And it will matter very little at that time what any will of trust says. This is exceptionally SELFISH on your father's part. Your mother is no longer capable of being purposely selfish, and that is then an excuse for her at this point, but it certainly wasn't at the time these things were written in their will/trust.
Be as kind about this as you are able, but wash your hands of it and return home.
Your mother won't wear incontinence pads - don't give her a choice. Throw away her pants and only provide incontinence pants.
Your dad wants you in his line of sight - walk away - is he going to chase after you?
It's in their wills that they want to die at home. I could write in my living will that I want to be taken care of by a doctor with the charm and looks of Keanu Reeves - it ain't gonna happen!
The only reason your parents are getting their own way is because they're being given their own way. And you feel guilty for that?
It's time you learned how to have boundaries and how to place your own needs as a priority. I'm glad you realise this.
It's likely that you are replicating behaviour from when you were young; I'm guessing that (even if yours were good parents) you and your brother were never encouraged to have your own boundaries or to see yourselves as separate to, or having equally important needs as, your parents. It's only a guess, so please don't feel angry or defensive about it. I don't want to add any negativity to your already teetering pile.
Look up about self-assertiveness and building boundaries online; you may find a lot of rubbish, but there will also be good information that can help you to create boundaries and to learn how to be self-assertive. I really think that could help you deal with the unearned guilt.
Assertive people aren't pushy or rude, they just know how to deal with situations where they need to protect themselves and their boundaries. Remember, you matter, too.
You have nothing to feel guilty about here. If they wind up in a SNF, you still have nothing to feel guilty about. With all these issues they have, it does take teams of caregivers working with them to accomplish the tasks. The money they've saved is precisely FOR such care, be it at home or in a facility, make no mistake. They are fortunate to have it and the wishes they've expressed in their trust documents are just that: wished. Oftentimes, needs outweigh wishes with elderly and infirm folks.
Good luck to you.
My dad is on three different medications for his anxiety at this point and to be honest, I don't think any of them ever helped, they just kept adding more and more to make up for the fact that the previous one didn't work. This approach can create its own problems.
Thank you for pointing out that his needs exceed what they would do in assisted living. And yes, she needs to be in memory care and they would be separated. I don't think either one of them would do well in that situation so it looks like we have to look into at home care.
The social worker I spoke to did say that she has a.. I think she said a skilled nurse that's available I'm pretty sure she said 24/7 at this point, but I can't remember for sure exactly what she said. I told her I needed to get something to write with and she said that we would discuss all this in person on Tuesday so I didn't stress myself on writing it down at that moment.
One thing that I have been anticipating for at least 15 years was the need for an at home worker to have their own room. I begged and pleaded and encouraged my father to have the master bedroom in the back fixed since nobody lives in there and my brother just uses the shower... it sustained water damage due to a leaking roof that has since been fixed but the interior was not repaired. As usual, my preemptive efforts to avoid future catastrophes went unrecognized. Instead my dad invested like $300,000 into fixing up some classic cars around here that he's not even able to take to car shows anymore due to his declining health.
So here it sits, The moldy master bedroom in need of repairs and this needs to be done before a caretaker can either move in here or run shifts with someone else.
I'm just overwhelmed and I'm tired of years and years of me trying to prevent worse catastrophes by trying to take care of stuff when I first noticed the potential for a bad outcome and being ignored and all of the pressure and problems fall on top of my head eventually when things fall through as I rightly predicted they would.
So I have been under the impression, and maybe wrongfully so, that just because it's mentioned in the will and the trust that he / they wish to remain at home until death, that I am bound to that until the ultimate end. I even spoke to the attorney one day and said what do I do about this situation because we can't handle their care at home anymore and he said well if you can't handle it, then you need to sell whatever property they have to pay for it. My dad does not want that to happen because that will take a major cut out of his regular source of income. Yes it will give him a lump sum, but he's aware that that lump sum will be burned through and there won't be any more cash flow from the rental property coming in once it's burned through.
So I really don't know what to do at this point. The attorney makes it look like I am locked in to see this to the end since it's in the will in the trust but even my own father doesn't want to sell the other house and I don't really know what to do to convince him to.
When you experience how you feel as guilty --- really dive into it?
What are my feelings now ... besides 'guilt' ? (tired, mad, frustrated, exhausted)
Guilt could be a combination of everything going on - which is 110% understandable.
The key is to be present with how you feel ... and ask yourself:
"What is underneath these feelings" --- surface feelings may be very different from what is really running you ... perhaps grief, sadness.
Yes, I would be very frustrated too if experiencing what your dad is doing.
Only if you / someone in the family has the legal authority to do anything can this cycle of his behavior change.
If I were you, I would contact his MD and be assessed for dementia. This is the only way (I believe) that you/family member can take some legal control over what he is doing. For instance, you could block or limit charges on his bank or credit card. He won't want ANYONE to change what he's doing.
While it is easy to give advance from a distance, if it were me, I would tell your brother to STOP being a 'yes man.' He has to set limits with what he'll do and not do.
Someone (?) needs to manage the caregivers. Tell them they are not allowed to drive more than 30 minutes a day ... or however you want to set it up. If you dad has / is assessed to have full mental capacity, he can do what he wants - financially and otherwise. This is the hard reality. And, yes ... you are 100% right - the $ he's spending on rides could be used for a monthly AL facility.
* Call his MD.
* Get him medical assessed to be of sound mind - able to manage his finances and do what is necessary for his best welfare (he isn't).
* Make copies of the financial / cr card / bank statements showing the $ going out. Sure ... he can pay people 24/7 to drive him all over and waste his $ this way. This is where medical intervention comes in. Hopefully, the social worker will help you proceed as needed.
GUILT - respect how you feel and look deeper. It is probably grief and anger all mixed up. If my dad, I'll be extremely frustrated / mad. Is he a narcissistic personality? Whatever the case ... meditate and exercise to get the / your energy out / re-balanced. My heart goes out to you and your brother.
Gena / Touch Matters
As for the guilt, never feel guilty that you are doing what you can and it isn't perfect. Doesn't matter what the caregiving situation, it will never be perfect. I know it is easier to say that than to do it. I still struggle with guilt, but I'm doing better as I think about what I'm feeling. You mention anger. I'm know expert, but I bet that a lot of what you think is guilt is actually a combination of a lot of other feelings: anger, loss, grief, lonely or alone, sad, unsure, and so much more. If you can take some time -- maybe even write it down -- delve into the feelings. Once you have a better handle on them, you might be able to figure out how to address them.
Just some examples, if feeling:
* alone or lonely, reach out to friends or family (or even here!)
* grief or sadness, give yourself permission to cry or scream or whatever you need to express that grief
* loss, look at the memories you had but also revisit the blessings in your life
* any negative feelings, if you can't figure it out on your own, consider talking to a therapist. I met with one just twice and it helped.
Sendings hugs and prayers for all you are going through.
Do you or other family have POA? Get your parents help before your relationships suffer more since their care may last for months, if not years, leading to burnout.
Your parents should be placed into a facility since their care is beyond your comfort level. If they will run out of their funds soon, verify with a Medicaid expert for financial assistance.