How should I handle my elderly father with dementia who doesn't want to spend a dime on basic things he needs?
I recently went to visit my 88 year-old-father in NY who had a stroke back in Oct. I extended my trip while I was there and stayed a month to help him out. He lives in a studio apartment and has around-the-clock aides.
I have 2 sisters who live in the city/ nearby suburb. There are plenty of supermarkets and banks all around his place. I live in Cali.
My Dad has no furniture except a couple of swivel chairs, a fridge that does not keep food cold and was about to have a major leak; he lies on a mattress all day long that is completely sagging in the middle. He does not even have a dining table or stationary chairs. He sits crouched over a super low coffee table in one of the swivel chairs to eat his meals or sort papers. He is now a fall risk, so chairs with wheels that can take off are not a good idea. He does have a small desk but rarely sits there.
He leaves his heat off and his aides complained to me on a number of occasions that they are freezing. I told them to sneak on the heat when he is sleeping. He also is in the dark all day watching news.
He complains incessantly about excruciating back pain. He spends at least 90% of the day in bed, lying in the same sagging spot. No wonder why he has back problems.
He takes anti-anxiety/ anti-depression meds. I alerted his geriatric internist that he spends most of his time in bed. He calls me on average 2-3 times a night. He sleeps all day, and then gets a second wind at night; because I am on the West Coast, he calls me instead of my sisters.
He had stacks of personal papers all over the place; I set up files for him while I was there. One of his aides told me that she had never seen such conditions in her many years of home care. It was that that prompted me into buying a fridge, filing cabinet, decent chair the aides can sit on during their 12 hour shifts that is not broken and horribly uncomfortable, a dining table & 2 chairs where he can eat without crouching down to produce further pain in his back. I called an exterminator for roach problem. Just human basics.
He still needs a new bed, but I am maxed out on spending to make his place livable. Wish I could afford all he needs, because he would never buy these things for himself. I also had a lot of travel expenses myself for plane tix/ a shared Airbnb. I have been unemployed for the last year and a half. The only way he would accept the deliveries was that I told him it was a gift.
The thing is that my Dad has the money to afford these items. My sister tells me that he does not want to do laundry because it takes too much $$$. He would insist his fridge is not broken though we told him it would cause major flooding, which would cost a lot more.
But he didn't complain when things started to get delivered and he didn't have to pay for them. Why did I do it? Maybe a bit of guilt mixed in with my strong sense of taking care of things that need fixing. I could not see him living like a pauper crouched down over his dinner and seeing a fridge that was a catastrophe waiting to happen.
During all that time I was in NY, I shopped and spent several hundred dollars on groceries and supplies. Soon after I arrived back to Cali, his aide called me to complain that he had no food in his apt; apparently after she asked for some money to go down to the supermarket, he refused. She asked if I could order food online. This was a few days ago.
I did but, fury took over me. I am not my dad's bankroll though I don't think he specifically asked the aide to call me. The next day, I told him that I am happy to order groceries online but that I needed his credit card info. I said very firmly that I can't spend any more money. He flipped out saying he didn't want that, that he would give his aides money for shopping.
I have heard old people, especially Depression era, are miserly.
I'm sure that I could have handled this better. Would love your ideas on how to handle his miserliness in the future. I'm not waiting to be reimbursed.
15 Answers
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What's more, these were not decorative items or treats. They were basic things like groceries and replacements of broken furniture, essential to his everyday living, hardly optional; and indeed in the case of the refrigerator it was dangerously faulty and your sister knew that in advance.
Send the receipts in to whichever sister with a polite note saying that you'd appreciate reimbursement as soon as possible to avoid interest charges on the credit card. And don't apologise, and don't give the impression that you're not expecting the money back either. This should be a matter of course.
And, so, say your father does notice the payment. What about it? He wants to sue? Let him. See how far that gets. Besides, the fact that he goes through the statements with a fine-toothed comb does not mean he's making any sense of them. Or are we supposed to think he's exhibiting sound financial decision-making skills, here?
Depression era my foot. Your father wasn't even born 'til 1930, his formative years happened during and after the second world war when economic activity took off and kept going.
I'm sorry to be so grumpy but I've got the impression that the three of them, among them, kind of saw you coming and it makes me cross. I can sympathise with your sisters' doing nothing because they don't know what to do but not with their painting a target on your back and running away.
You don't know my family but you are so perceptive. In hindsight, my sisters did heap a lot of heavy work on me by standing back and doing nothing while I was in NY scrambling to make my Dad's place livable. Plus my sisters both know that back in Cali, I have been struggling with my miserable 90-year-old French mother-in-law (with dementia) who has been living with us for over three years and that we've had a tough time financially. You have responded to a number of posts about my MIL too. Thank you for your insights, I always appreciate how you frame these situations.
It's hard to figure out what to do when you give up so much to help and do the right thing, and the person on the other end (my dad or MIL) are unappreciative or respond with extreme anger at your kindness. Or just think of you as a dumping ground for their complaints. I don't always know where the dementia begins or ends, but I don't believe that caregiving for a loved one with dementia means that you have to lose your soul. I sometimes feel like relocating to a different city, getting a new phone, and not leaving a forwarding address. I'm pretty miffed too. And thanks to you and other posters I will ask my sisters to be reimbursed.
Your father seems to be falling through a number of holes in his care. *Somebody* - and I don't mean you - is not doing her or his job.
Your father had a stroke less than two months ago. This put him in hospital, did it? - and then he was discharged back home. Via rehab or straight home? Who was involved in setting up his care package?
Leading on from that, who is now co-ordinating the aides?
And going back to before, leading up to the stroke, was your father resisting care? Did he have any known health problems then?
I am actually not blaming City sister. We all know that making somebody accept support is a ticklish business, you can't do it overnight; and there may be very good reasons why your sister is approaching your father gingerly. But here we are, rising two months in, and it's about time she - or somebody else, if she isn't keen - got a grip.
Calling you twice a night isn't sad and lonely, it's pathological. Your father is mentally ill, and that could well be because he is physically ill. Did his internist reply to your alert? Depression is common post-stroke, vascular dementia is strongly associated with it. I'm all for respecting people's choices, but that has to be combined with responsibility for their welfare.
It's a question of finding out who is taking control of this risky situation for your Dad (which, again, should not be you for the sake of sheer practicality) and supporting that person. Do your sisters talk to one another, to you, to your father? What might be a good way to get everyone on the same page?
Sorry to take a while to respond. My MIL who lives with us took a spill today and my husband is out-of-town.
My sisters are very angry at each other. So it's hard to get everyone on the same page. I have always been the one who plays mediator and passes messages along, because frankly they don't really want to communicate with each other. The City sister has been the one who has organized home care and all the required PT (in his home) after rehab as well as equipping his bathroom to prevent falls. She really has carried a lot of the burden in my dad's care.
My dad has had mental illness for a long time, has had psychiatric hospitalizations, and has had problems with depression and anxiety for decades. Plus he has hypochondria and constantly wants to go to the ER and calls us to say that he is dying. So this is nothing new. He has been on a myriad of meds and he just does not seem to respond to anything. He is treated at one of the best hospitals in New York for all his care, and his geriatric physician is excellent. Yet despite the treatments he is very agitated.
He calls the doctor/ her nurse nonstop to complain about his ailments (mostly pain and feeling cold), he is constantly breaking appointments too. One doctor recently threatened to drop him as a patient if he cancelled.
After the stroke (it was minor), he went to rehab and was released home. He had a 9-5 aide who came from a well-reputed home care agency prior to the stroke. Since being released from rehab, it's round-the-clock care per facility instructions. My dad thinks that he will be able to ditch the full-time home care. I doubt it. And he absolutely does not want to go into assisted living or a nursing home.
.
The one uniform instruction the aides have been given by the agency is not to allow him to go to the ER. He always wants to go. Obviously if he had severe breathing problems they would let him.
So on top of depression and anxiety, he has narcissistic personality disorder, is obsessive compulsive, and I had one psychologist tell me about 10 years ago that nothing provides pleasure for my Dad.
All three girls feel like we are always walking on egg shells around him. That's probably why we don't confront him and certainly can't have a normal conversation with Dad, saying "Hey, this is what you really need." He gets angry, defensive, and overwhelmed if you say anything he does not want to hear - like telling him he needs a fridge. He just loses it, starts to yell and shuts down. He seems to listen most of all to my brother-in-law who is married to Suburb sister. We think it's because he's a guy plus an attorney.
I have no idea of how to get everyone on the same page. I think we all would like to see him in a better place, but my Dad still has a mind to do what he wants to do and his temper tantrums are hard to deal with as daughters. He has a phone nearby and no one can stop him from cancelling appointments, like one he had for an MRI of his back earlier this week. I told him to keep it, but later that evening he told me that he cancelled it. The aides don't force it either, he often cancels the same day saying he doesn't feel well and can't make the appointment.
So I don't have an easy solution, many folks on this forum are caregiving for loved ones with hellish temperaments. Whether gaps in care, I don't know, but some elderly parents like my Dad just don't make it fully possible for us to fill all their needs.
I think your father seems to have crossed a line from miserly to nuts. Are your sisters staying away from him on purpose? Are you in touch with them?
Thank you so much for your always spot on remarks. See my reply to TJ Lang below. I realized that I replied to your comments in that post. Have a wonderful day!!!!
I just realized that I also replied to CountryMouse here as well!!!
Despite my Dad being out of it on many levels, he still checks his bank statements carefully. He would not let anything pass.
I do not have access to his bank accounts; my two sisters each have joint ownership on his two checking accounts. One sister who lives nearby writes checks for him to pay for condo fees, utilities, credit card bills, etc. This same sister had alerted me to the refrigerator problem, but until I got to NY I didn't realize how bad it was. My two sisters are employed; for the past decade he has gifted the one sister (Sister #1) who lives in the city and is unmarried. But not me or the other sister (Sister #2) who lives comfortably in the suburbs. Sister #1 is the one who writes checks and does more in terms of managing home care and doctors.
Sister #1 told me to keep the receipts and I have tracked that I spent over $5000 for the trip and purchases, which will sit on credit cards collecting interest. I just don't have the means to pay the credit card bills until I am working again.
In a normal world, it would be the right thing to be reimbursed, but I am not expecting it, because my Dad will say he never wanted all the things I ordered. And granted I did order them on my own, and then told him after the fact. Because I know that he would out-and-out refuse these items. Yet he doesn't mind as these items have been delivered piece by piece because he is disassociating the expenditure of money.
Because I have always lived far, and for whatever reason, my Dad put my two sisters in joint ownership and as beneficiaries on most of his accounts. I learned this very recently. We sorted a lot of that out, but there is still substantial money where I am excluded as beneficiary. I don't think he purposely tried to exclude me, and I did not go to the bank when the accounts were initially set up so do not know what happened. My sisters do not get along and barely talk to each other. My Dad considers me the go to person to call even though I am far.
Though I felt compelled to help him with making his place livable, I think a reason why this is bittersweet is because I had just earned a PhD and suffered a significant brain injury during a trip back from Florida back in 2010 to help him move up to NY. I know he's not the one who dropped the suitcase on my head, but I have paid so much money out-of-pocket for my medical and have had lost income from difficulty teaching due to continuing chronic headaches, vertigo, and cognitive impairment from the injury.
That's a long answer but I wanted to provide more context of the finances here. Thanks so much for your reply, maybe one day he will be less aware of his money and expenses but he is extremely stingy for himself and others, and I doubt that will ever change.
I would talk to him if they call again. You can remind him that he agreed to take care of it.
Is it possible to have the doctor prescribe a hospital bed that has the rotating air chambers? Medicare will pay if the doctor says it is a necessity.
That was very nice of you to do all you did for your dad, hopefully your sister's will keep an eye on him. His executive function could be comprised, living the way he does leans towards that.
Tough job, well done!
Like yours he checks his bank statement - gives him a warm glow I think.
Hes totally obsessed with not "wasting" money. But same as you hes happy for me to spend money/be inconvenienced.
His classic from a few years ago which we fell out over was he expected me to travel 2 hours from work lose half a days pay (Im self employed IT so no work no pay for me) to take him to hospital appointments. I'd sorted out free patient transport (didnt like it) and sorted out taxis even offering to pay.
BUT he still thought I was being mean not giving up 4-5 hours of my time to give him a lift because he doesn't like taxis (because they rip you off). So £20 saved but almost 5-6 times that lost for me. Hey ho.
My dad is the same - always been super cheap - even back in the day would conveniently walk to the bathroom just around the time the check came when we had dinner with him. NYC taxi drivers are lucky if they get $1 tip on a $15 dollar ride. There is free or very inexpensive transport for the elderly, but for some reason he didn't want to be seen taking it outside his elevator doorman building. We tried.
I understand this may be difficult to figure out, hard for you to stand firm and wonderment if you should ask, and even harder to ask.
Copy the receipts. Mail them to sister. Don't overthink the process, or worry what will happen.
Just getting them copied, finding an envelope and pen, attaching a stamp, overthinking if you should e-mail or snail mail, or take a photo of the pictures and push Send----all of this can be daunting. Send it all a.s.a.p.
You can do this....taking care of this quickly and responsibly will have you feeling better about yourself...no matter the outcome.
If you are on the phone alot with Dad, start asking him things like, "Are the caregivers sharing your food? " " Do you have a budget for food?"
He may have had a perfectly good reason not to give the caregiver money that time.
My personal experience: People will wait for others to step up. Some people who are users and takers will see you as easy, and start to ask you for resources and money. Tell them that your visit was a one time only thing, and refer them to ask sister in charge.
If ever you need to visit Dad, have sister send monies in advance.
You really are somone with a strong sense of wanting to take care of things.
That costs you, I understand, and the need to NOT wait for everyone else to discuss it, approve it, pay for it, etc., I understand that too.
You took care of it, and at 88 your Dad likely did not thank you for it, because he cannot now.
Take care of yourself now. You deserve it!
How are you feeling now Selma? That resentment thing can make you very ill.
Try not to do that to yourself again. You are too too kind of a person, and I think it is called caring too much.
I am definitely way too nice, that's probably why I also have my 90 year old legally blind, very hearing impaired MIL with dementia living with us, who is a complete handful in herself. It's over three years that I have had to endure her yelling and paranoia about everyone stealing her stuff.
And I feel righteous now, to know that before I leap into helping someone else that I need to step back. I wanted to make my Dad's place livable in the short span of 2 weeks at the tail end of my trip. I think he appreciated it the best he can, but in the end I definitely feel used. That's not a good feeling.
It's more a feeling of loss than resentment that I have. I feel that I have lost 10 degrees of freedom to do what I want. I think if anything this trip showed me it is time to reclaim my life, and assert loudly that this is my time. I have tears welling up in my eyes as I write this.
I will not put myself out on a limb again like this again, and that I am very resolute about. I have an Excel spread sheet with all my expenses already set up that I am sending both my sisters this weekend, including travel to NY. Stay tuned and I'll let you know what happens.
Thanks a million for your insights - your comments really struck a chord.
I was like you. Its hard I know. I'm better than I was but I had to be because I'd probably be divorced by now because of him. So now I just let him get on with it.
I always used to think "Am I being mean here?" "should I help him more?ven when he was at his worse. One thing - small thing tipped me over and made me realise.
I'd accidentally left his wheelchair (which he rarely uses) in my car. He wanted me to visit him on the Wednesday evening after work - I just couldnt due to childcare. So he says "but I need my wheelchair back for Friday" which was news to me. He said "Im going out in the day Friday and my cousin is going to push me so can you find time to drop it back to me".
I explained I couldn't do thursday evening either due to same reason but if he REALLY needed it I'd see if I could pop up lunchtime on Thursday (Its about a 90 min round trip from my office so not great).
Thursday comes. I get called out at 4am to the office. Chaos in the office (I work in IT support). Phone him 11am explain the situation, ask him again, do you REALLY need the wheelchair tomorrow? YES.
So after 4 hours sleep, I rush up there and drop the wheelchair off. Very tired.
So Saturday I see him ask him how his trip out with his cousin went in the wheelchair. "Oh I changed my mind, didn't think it was fair to ask him to push me around in it".
At that point I realise he had no interest at all in my welfare or wellbeing and was just playing a game to get someone to run around when he wanted them to.