My father is threatening to put my mom, who has cancer, in a nursing home

Miscellaneous and Personal Stuff I Must Share
1

My mom (62) was diagnosed with a malignant brain tumor at the beginning of this year. It is inoperable and she will eventually die from it or a related complication, even after having already completed radiation and chemotherapy. The median life expectancy is 12-18 months from diagnosis, but her doctors said her age the fact the tumor couldn’t be removed likely make her prognosis very poor.

I (26) live and work 500 miles away. My father (75) was able to take care of my mom on mostly on his own with frequent visits from me for the first 6 months, when her symptoms were manageable. However, she has greatly declined since July. Now she needs a walker, can’t sit up or use the toilet without assistance, she has very poor memory, and her neurologist says my mom’s scores on various cognitive tests show she basically has moderate dementia. I already used up all of my vacation and sick leave making 1-2 trips a month to visit since January. So I took FMLA at the beginning of August and temporarily moved back in with them to basically do everything. I’m on my 6th week of the 12 weeks I get with FMLA.

I told my father that I will have to go back to work before my leave runs out. He said if I leave, he’s putting my mom in a nursing home. I am unbelievably upset and stunned he said that. Because of her condition, I know she would be afraid and upset without familiar faces. If she is longer lucid, then I wouldn’t have an issue, but definitely not now. I understand his age makes it difficult to take care of her alone, but that’s why paid home aides exist, and they can afford it. I already set them up with a home care agency earlier in the year, but my father told them not to come back after two visits. He claims he can’t “handle it” having people in the house all day. I also suspect that he doesn’t want home aides because most of them are black and maybe he thinks they will steal? Hospice doesn’t really solve anything either because they only make a few trips a week to the patient, and the family is expected to provide care until the very end when they take over 24/7.

I suggested as an alternative that they temporarily relocate to my city and we all live together in an apartment, and he initially claimed to be ok with that. Then my half-brother (father’s son) forwarded me an email that my father had sent to him that was full of vitriol, accusing me of treating him “like dirt” and how I was selfish for trying to “take an old man out of his home”. I am so angry that he went behind my back to them because he doesn’t expect his other children to do anything despite my mom having raised them as well, while I have been taking on all of this huge responsibility (I’m even my mom’s POA and make most of her health care decisions) even though I am the youngest and least established child.

I think my father expects me to quit my job and take care of my mom until she passes away. I love my mom, but I think that what he expects is outrageous, and if my mom were healthy, she would never ask or expect that of me. Also, he has hinted more than once about selling their house and going back to Turkey, his birth country, after she passes, and I could be left in the U.S. to fend for myself with little money and no job, and my field has a terrible job market (I was unemployed for a year after graduation).

I’m not sure what to do or say…

2

Ugh, what a horrible situation.

First off, yes, it is unreasonable to expect you to quit your job and move across the country to care for your Mom.

However, it may well also be unreasonable for you to expect a 75-year-old man to care for your Mom. Home care for the elderly - even the relatively healthy elderly - is really, really tough. You probably know that, having done it for 6 weeks now. Take a step back - once you leave, can your Dad really take care of your Mom? A nursing home and/or hospice care may be the best option. Nobody wants to hear that, but sometimes life sucks.

I don’t really have any great advice for you, other than to reinforce that you should not feel an obligation to give your life up to go care for your Mom. Do what you can, but also be cognizant that your Dad probably feels scared and helpless as well, and might not be making the best/right decisions.

Many health systems have elder care consultants who might be able to let you know what your options are. Visit some nursing homes; they all aren’t terrible. Maybe you can find a hospice you like. Or keep talking with your Dad about home health care - we were able to keep my 95-year-old grandmother in her own apartment for many years with the help of home health care. Maybe he’ll warm up to the idea with a little more discussion.

3

Actually, now that I think about it, we were able to keep my 90-something mostly-healthy only-mild-dementia in her apartment for several years with the help of home health aides for 3-4 hours a day, at least an hour (or more) a day aide from my mother, and me on backup for when my Mother was unavailable. And it was tough. Really, really tough.

I don’t know the particulars of your family, but if I were you, I’d really think long and hard about whether or not your father is at all equipped and able to give your Mom the care she needs. I’m not saying he’s not - everyone is different - but it’s damn hard. Damn, damn hard.

4

"…an email that my father had sent to him that was full of vitriol, accusing me of treating him “like dirt” and how I was selfish for trying to “take an old man out of his home”…

Of course it would be selfish to take an old man out of his home. Much better that he should take an old lady out of her home. To die. He’s all heart.

5

As someone who watched my father struggle to take care of my mother during her final bout with cancer, I think you’re expecting a lot out of a 75-year old man trying to care for someone who “needs a walker, can’t sit up or use the toilet without assistance, she has very poor memory, and her neurologist says my mom’s scores on various cognitive tests show she basically has moderate dementia.”

I also think you’re expecting too much if you want an old man and a woman in failing health to move 500 miles to share an apartment with you.

I’m really sorry for you, and it sucks to be in your position, but it also sucks to be in your father’s position (in my family’s case, it was my mother who ordered my father to fire several home care aides, tell visitors that she didn’t want company, etc., which made him look like the bad guy.)

I hope you and your family can work things out.

6

I’m sorry to hear about your mother. I know how devastating losing a loved one to cancer is to family members.

That said, I can’t say that your father putting your mom into a nursing home is a truly terrible idea. I was my mom’s primary caregiver when she was terminally ill and it’s incredibly difficult. I wouldn’t have missed being there for her for the world, but it was literally the hardest thing, mentally, emotionally, and physically I’ve ever done. I honestly don’t think many 75 year olds such as your father would have the stamina to take on such a role.

In my mom’s final month, she went into a nursing home. She had fallen and broke several vertebrate and needed a wheelchair but there was no way to get her in or out of her apartment with one. The first home she was in was pretty terrible. Her bed broke, so that it was tilted at about a 30 degree angle. The first day, they said they’d fix it later that day. The next day, they said they’d get to it right away. The third day, we had her moved to a new nursing home, which was much better. It wasn’t perfect, as nursing home staff are often overworked, but the people there were truly committed to caring for their patients. When my mom passed away, several of the staff were in tears.

If your mom does go to a nursing home, you need to recruit your siblings/step-siblings, other relatives, father, and your mom’s friends to visit her frequently. It’s important for people to know that they haven’t been forgotten and are still very much loved.

Have you talked to your other siblings/step-siblings about helping your father so that your mom can stay home, though? Maybe they’d be willing to help out if asked, or take your father out of the house for a couple hours each day while a home-care worker came in.

I personally would nix the idea of having your parents move in with you. Your parents surely have a network of friends and family where they live, and it’s important for both of them to maintain this network, as they’re both going to need emotional support. I contemplated moving my mom to my apartment (about two hours away from where she lived) but she wanted to stay close enough that her friends and other family members could visit her. Your mom may feel the same.

You must remember, though he may seem cold-hearted to you right now, your father is losing his wife. It is a hard thing to face every day, seeing someone grow weaker and weaker and being unable to do anything to alleviate the course of disease. I know you’re having to be the strong one here, and that this has to be heart-breaking for you, and again, I am so sorry that you’re having to go through this emotional nightmare.

7

That’s why he can hire licensed, professional home aides in their 20s and 30s up to 24 hours a day to help out if need be. My parents can afford it, I’ve seen their finances. What isn’t rational is to expect your one of your three children to become a full time caregiver for months or even years because you feel inconvenienced by strangers in your home, while you don’t ask your other children to do anything and you’re not willing to make any compromises yourself (I view him moving to my city as a compromise, not a one-sided demand).

8

I forgot to mention in the OP that my father’s other children live out of state, and my parents have no friends, other family, or even a church group where they live. My parents were very much loners, and I have been their entire support group for many years. On the other hand, where I live I have an extensive network of friends and co-workers willing to lend us a hand.

I’m not opposed categorically to nursing homes. If my mom were closer to the end of her life, I’d be okay with considering it. But right now she is still relatively lucid, and I’m sure she would feel very much abandoned. She could live another 6-12 months in this condition, and the thought of her in an alien environment like a nursing home for so long is frightening.

I don’t mind taking care of her. For the past 6 weeks I’ve changed her diaper, helped her walk, cooked for her, bathed her, etc. etc., and I can and am willing to continue doing so. I just can’t lose my job and damage my future to do this 24/7 for possibly many months and months. Back when my mom was first diagnosed and I was severely depressed, she told me not to let her illness destroy my life.

9

You shouldn’t quit your job, and no one (except possibly your father, who is dealing with too many issues to be rational right now, perhaps) would expect you to. Even if you did, the amount of care and the timeframe you will be able to provide what your mom needs is limited.
I’ve worked in home health care for a long time, providing care for people like your mom. I’ve seen people with absolute truckloads of money end up flat broke providing the 24/7 care their loved ones need. Maybe your family is rich beyond that, but it really is possible to lose it all, and your dad may be frightened of that possibility.
Beyond all that, though, is the truth of the situation: you mother is going to need increasingly difficult and complicated care as her illness advances. I doubt that your dad is capable of handling it now, and if he is unwilling to have aides come in to help (and that’s not at all unusual in my experience), then a nursing home may really be the best way to go. If he has plenty of money, he should be able to afford a good quality facility. Even if you disagree with his decision, you have a chance here to have input into that choice, and I’d go for it while you have the opportunity.
You are probably not going to be able to control his decision, but maybe you can at least direct it in the best-possible way.
Good luck. I’m so sorry that your mom is sick. My heart goes out to you and your family.

10

Somewhat of a similar situation, with my grandparents.

I will tell you that my grandparents fought tooth-and-nail against having a live-in caretaker, but also were dead set against going to assisted living. (In this case, my grandfather was the one who needed the extra care, and given his dynamic with my grandmother, outside of intervention from their children, there was no way that he was leaving his home.)

It wasn’t until he was in a car wreck that they realized that my grandmother (in her mid 80’s) wasn’t going to be able to handle it alone. So, after a LOT of debating, hemming and hawing, etc., they decided to have a live-in caretaker.

The first one (a black guy) didn’t work out so well. My grandparents were still opposed to the idea, but saw it as the best of bad choices. I can imagine they didn’t make things easier for the guy. They eventually let him go (and later they found bras in the room where he stayed, making my grandparents think that he either had women over when they weren’t aware, or that he was a cross-dresser… I wish I was kidding). I only mentioned his race b/c there may have been underlying prejudice in their attitude, much like your father.

The one they have now is great, and meshes really well with the family. I believe he is of Pakistani descent and later-middle aged. It may be that they’ve finally warmed up to the idea of having someone else live in their house, or it may just be a personality fit. They’ve both come to rely and trust the man, and it really did work out well.

Honestly, I would try and work the caregiver angle more. If it is a matter of him being biased against a certain ethnicity, typically agencies try to hire people from across the board, because a great deal of the job relies on the personalities of all people involved getting along.

11

If you have a broad-ranging power of attorney (of the durable variety being important) and your mother doesn’t nix it, I’d say you’re in a position to hire an agency/folks and their marching orders are to tell your father to buzz off if he makes trouble. They must be quite used to this type of behavior, and just because he tells them not to come back doesn’t mean they have to listen to him. Your mother would be their client, and unless she tells them to go (and is still legally competent to make decisions for herself), they stay. It’s her place too.

“He claims he can’t “handle it” having people in the house all day.”

That’s a damn weak excuse when the alternative is a nursing home for his wife and he isn’t the person to have to do the caring. You aren’t giving us info to indicate whether he’s always an intractable ass or whether you believe he’s having mental health issues. His reasons for in effect NOT wanting her to be in a comfortable, known environment are shyte, and his kids should be telling him they’re shyte.

You may want to prepare to ask a local attorney to seek conservatorship over your mother (as of when she’s no longer legally competent to make decisions, since a durable power of attorney isn’t a document that means you have control over her person; father could still stick her wherever he wants absent you being a conservator).

Regardless of what I do, as for $$$ issue, I’d certainly not ponder a scenario with an expectation that your father provide you with dough if you lost your job should you accede to his wishes.

12

I’m really sorry you are having to go through all of this. It sounds very hard on all concerned, including you.

If your parents have no other support network and are loners, I think that your father’s statement about the nursing home is just a clear communication of what option he will select for your mom’s health care when you are no longer able to help out, not a “threat.”

He tried the “home aides” approach at least a bit, and decided for whatever reason that it is not a good solution for him. If he is a loner, having strangers constantly coming to the house is going to add more stress for him on top of an already stressful situation. This type of medical crisis is not going to transform him into a sociable, open person who welcomes chances to interact with new people, it is only going to accentuate his personality characteristics.

He certainly can’t take care of her himself. So I think the nursing home is actually a good solution.

If they are well off, they can afford a good nursing home. Now would be a good time to start helping them find one that you will feel good about having her live in. There might even be one which lets them both live there together in an apartment-type setting, with a certain amount of nursing support for your mom, at least until she requires more of a hospital-room type setting. You say she has moderate dementia but also said she is lucid. She may be able to have a say in where she spends her last few months if you do this now, instead of waiting until she deteriorates further.

Don’t jeopardize your job. Don’t feel guilty that you have to leave in order to remain employed or solvent or whatever.

If he goes back to Turkey after your mom passes, that is his choice. He’s not leaving you to fend for yourself…you are 26 and an adult and employed, he should feel free to move back to his homeland if that is what he wants.

13

You’re mad becasue your father won’t ask his otther children to help, but you forget to mention that they also live out of state, and you imply that the other children haven’t been a part of their lives for some time (“I have been their entire support group for many years.”)

You say that your mother “basically has moderate dementia” but that she’s “still relatively lucid,” and that you’re not opposed categorically to nursing homes, but they’re an “alien environment.”

I’m sorry to be blunt here, but I’m picking up a lot of emotions here that don’t involve your father’s current behavior at all.

The very best thing for your mother (and your father) may NOT be to continue to live at home being cared for by what will probably be a succession of poorly paid aides who quit as soon as they can find a better job, and a grumpy old man. It may indeed be that she’ll be more comfortable in a professionally run group environment. You need to get past your anger at the entire situation to sort all this out.

14

I agree with everyone who has said that a nursing home may be the best option for all of the reasons that have been stated. I suggest you start looking for a nursing home now, while you can actually go visit them. And you should aim to move your mom in the last couple of weeks that you are in town. That way, you can help her get settled and reassure yourself that she’ll be okay. You may be surprised at how well she takes it. Either way, seeing it for yourself will be easier than only hearing your dad’s reports from 500 miles away.

It sucks that all of this responsibility has been put on you. It isn’t fair, but this sort if dynamic exists in a lot of families. Try to stay focused on your mom’s needs in the context of the help that is actually available, not what should be available. End of life care has so many hard decisions. I’m sorry that you are having to deal with this.

15

I’ve been involved in end-of-life care a few times and honestly, I don’t think a 75 year old man is physically up to the task, it was damn hard for 30 to 40 year old caregivers, and in all instances we had more than one person to lend a hand and give the primary caregiver some relief.

Let’s see what the alternatives are:

  1. Home health aids. You’ve mentioned the issues your dad has had with them. As noted upthread, the cost adds up. You still need someone around in case an aide doesn’t make it to work on a give day or shift.

  2. Dad attempts it on his own. This will end in tears. Best case, dad exhausts himself physically and emotionally. His health may suffer, he may take a fall and hurt himself while attempting to assist/move/lift his wife. Worst case, you mind end up with a situation where, due to an elderly person simply not physically being up to the task, neglect or abuse occurs.

  3. Nursing home/long term care. Dad (or primary caregiver) will still have to be a frequent presence to make sure there are no problems BUT dad will not be physically and emotionally exhausted by caregiving. When he’s there he’ll be able to visit as her husband rather than just the diaper changer/lifter/shifter/feeder/cleaner/etc.

Actually, all three of those alternatives CAN work… under the right circumstances. The question is, what are YOUR circumstances?

16

Remember that nursing homes isn’t just strange faces all the time. As others have said, your dad and you and the other kids can visit her all the time. My grandma spent all day at the nursing home with grandpa, except when he was napping. She ate every meal with him (which she loved, because it was free if you assisted someone with their meals). We came to visit grandpa there a few times, and so did everyone else.

And it was just so nice knowing that grandma didn’t have to do any of the nursing, and there was someone there to watch over both of them while she was there.

I mean, we all have our preferences and it still might not be the best thing for your mom but still, don’t think that nursing home means a sad end, locked away from everything/everyone you know and love.

17

I recommend having a further discussion with her oncologist re: hospice care. You may find that there are more options than you are considering.

18

You aren’t going to be there to care for Mom, and Dad has the money-you have no right to decide how others take care of her. It’s as simple as that.
This is the eternal bitterness about not having money, so that you can do what you want. Your dad has it, so, he will do what he wants.
I don’t see how you can get Dad to do what you want for him to do. In fact, he has the other children, who have done nothing, it seems, to jump in on his side (as all do-nothing relatives will do, to the disadvantage of the helper).
You seem to be keeping an eye on Dad’s money, in case things go south. If that is the case, you cannot provoke him. You have gone as far as you can without quitting your job, in re your mother.
So, either quit your job and take care of Mom and your inheritance, or go back to work, and put a sock in it.

19

Why is that better than moving her? Why does your father have to watch and hear her decline constantly while letting a constant stream of strangers into his house?

When people hear that my grandmother now lives in an old folks’ home, either it’s someone who also has a parent or grandparent in one, or they ask “oh, why didn’t you get her a home carer?” Some of the ones who ask later turn out to have parents or grandparents in a home, yet they still assume that we did not get Grandma a home carer.

We did.

For two years.

But now it wasn’t enough. She had reached the point where she needed someone 24/7. That’s five someones, and five someones who would have changed frequently (not all five, but between vacations and personnel changes, there would always have been someone who was “the new one”). Add food service and that’s more someones tampering with her kitchen, her clothing, being subject to her suspicious nature and her constant accusations, being accused of theft any time someone couldn’t find something. In her home, the nearest hospital room was an ambulance away. In the home, it’s on the 8th and 9th floors. When she hurt her leg and needed to use a wheelchair for a while, not only were chairs available but she was in a place that’s adapted to their use, with wide hallways and with all toilets and showers accessible. In her home, the toilet is in a place barely large enough for the open door and the toilet itself; the shower is raised.

A nursing home/hospice is not a people warehouse; for many, it is simply the best option. Don’t fight your father, ask how can you help him and then do it.

20

Echoing the suggestion to re-look into hospice care at home. The description you gave doesn’t sound like the home hospice I’m familiar with. I’m a home health care (not home hospice) nurse, and one of the best persuasive points when I feel like a person needs to be moved into home hospice care is how much more assistance they get than under home health care.

Under Medicare guidelines, a home health benefitis available for “part-time or “intermittent” skilled nursing care.” and it’s designed to happen in 60 day increments. If I want to keep seeing a patient for another 60 days, there are hoops to jump through. It can be done, but the visits remain “part-time or intermittent,” generally one or two days a week. I can sometimes go out daily for a week or two, but Medicare really wants to know why and when I’m going to stop doing that. People who need full time or “custodial” care are specifically excluded from receiving those under the home health benefit. It specifically excludes homemaker services, as well.

Medicare home hospice benefit, on the other hand, offers much more generous benefits, including homemakers and more hours of a CNA to assist with activities of daily living (eating, washing, toileting, dressing) as well as more hours of a skilled nurse as needed.

The benefits for private insurance vary, but are generally similar to Medicare.

I’ve even had people go from home health to home hospice and, with all the extra help, get stronger and regain function and get better enough to come out of home hospice and back into home health. That can happen, there’s nothing to keep you in home hospice if you decide you don’t need that much help anymore. Transfers back and forth happen all the time. Just takes some paperwork - and you don’t have to do any of it, the nurses will take care of everything.

Lots of people confuse home health and home hospice. I wonder if the person who explained them to you was one of them.

I’m not saying you should go the home hospice route, mind you. From what you say, it may very well be that a nursing home will be the better choice for your family. But I want to be sure you are making your choice from correct information.