How to take a terminal relative in to your home to die when there are multiple complications?

October 12, 2009 10:20 AM

Mother with terminal cancer, dad being an @#$ about her care, I want to take her in but it's complicated. How do I handle it?

My mother's cancer is spreading (metastatic breast cancer--now in liver, spleen, bones, spot in lungs). She's been on more aggressive chemo and it's not working. They want to put a port in her veins and she doesn't want it. Dad forcing her to have it. She just wants to stop all chemo and let things happen. However, my dad is getting sick of spending money (he can afford it + Medicare/insurance suppliment), driving her to 2ce a week chemo, seeing her "complain". He's in denial about her dying. On the other hand my mom is tired of everything, being controlled, not being allowed to recover because he forces her to live life like nothing is wrong (puking? What about my dinner? Go cook). Doc won't give time estimates with or without chemo (she probably doesn't know).

My dad, being the controlling asshole that he is told her that she is going to be kicked out and have to die somewhere like a home. I am appauled and want her to stay with me. However, this poses multiple problems:
1. I have a 10 month old
2. Small house; all 3 bedrooms (mine, spare, baby's) are right next to each other at the top of the stairs so no privacy for anyone
3. my husband and her don't really get along
4. me and my mom don't really get along because she can be highly difficult (you can't thank 40+ years of abuse). She can throw temper tantrums, butt in where she doens't belong, swear/yell if she doesn't like something ,etc. My son is being cared for by a college student nanny. I can only imagine her being vocal about his care while we're at work. I can't have her impact others and lose a nanny over this either.

I do not believe someone should be shoved in a home to die alone. However, I'm her only option. I have to also worry if dad (out of loss of control) will cut all of her medical care since he pays for it. I would need him to continue her care, hospice, nurse care under my roof because I can't afford it.

Is it logical for this to work out so she can have at least her last days in some peace/normalcy?
How can I continue to have a normal house? (my husband and I are going through marriage issues as it is; she knows some of it and I don't want her instigating things either).
Finally, when is the right time to take her in? She's not dying right of yet and is fine but the way things are going, it doesn't look like this will be another year of this. Do I take her in during her final weeks? Three months before? When she decides to stop treatment or when my dad because impossible (not that he isn't right now)?

I have no answers but just want to "fix" this in the best possible way to give this woman some dignity--despite our history of severe ups and downs. However, I have a husband and a baby. I don't want it to impact them either.

Thanks.

posted by stormpooper to human relations (34 comments total)

Can you get a trusted family friend or distant relative to act as a facilitator? Someone who can sit at the table with you, your mom and dad, and discuss the issues calmly? And ditto for you, your husband and your mom.

Your mother also needs a care advocate. Whether it's you, a friend of hers, or someone else, she needs someone who is NOT your father to be involved here.

You will have to set guidelines. Everyone will need to set them, actually.

There is no way this will not impact your husband and baby. Even if you do nothing, it will still impact your life. Your mother dying will likely have a profound impact on you. If nothing else, you should consider some counseling just to help YOU work through things.

I am sorry to hear of your mother's illness.
posted by micawber at 10:27 AM on October 12

I'm so sorry you're going through all of this. I can't think of a holistic solution, but here are some resources:

National Council on Elder Abuse
National Cancer Institute on hospice care

You sound like a good and caring daughter. Best of luck.
posted by motsque at 10:27 AM on October 12 [1 favorite]

This is going to sound terribly harsh, but your own family - the one you and your husband have created - and your OWN CHILD are your primary responsibility and must be your primary concern. If you and your husband are already having relationship issues (very normal with a first infant, btw, get to counseling if you haven't already), then this can only make things worse - especially if he and your mother don't get along. It will not make you a bad person to admit that you can't take on this responsibility as well. (Repeat that last sentence as necessary.)

Also, you may think she has less than a year, but people are surprisingly resilient. A stressful, painful situation like this, with no end in sight, may destroy the family you have created. If your dad is bent on being a dick about it, there's nothing you can do except visit her regularly in the hospice or wherever she ends up.

I am so sorry you're going through this. :(
posted by chihiro at 10:29 AM on October 12 [3 favorites]

It sounds like your father is portraying an assisted living/nursing home/hospice facility as a lonely hellhole. To the contrary - those places are by and large staffed with caring, educated, experienced nurses and professionals who genuinely care about and provide excellent care for their residents. Caring for your mother in your home is not your only option, and may not even be the best one. I really recommend looking into facilities near where you live to see if you can find a good fit. You'll still be able to spend a lot of time with her, but the strain on your household and your own emotional well-being will be greatly lessened.
posted by something something at 10:32 AM on October 12 [14 favorites]

This is going to sound terribly harsh, but your own family - the one you and your husband have created - and your OWN CHILD are your primary responsibility and must be your primary concern.

I actually REALLY disagree with this. She's your mother, who, presumably, cared for you for eighteen years, every time you were ill. I totally understand your inclination to help her, even if she was abusive/difficult.

I'm sorry that you're in such an awful position. You don't mention if you work or even live close enough to your parents that you could help out around their home.
posted by roomthreeseventeen at 10:36 AM on October 12

It sounds like you need a social worker who is used to helping families sort through end-of-life issues. Every hospice has a social worker. Hospitals do too. Perhaps you can get a referral from her oncologist's office?

I'm not sure how your dad has the power to cut off her Medicare. That doesn't sound right. Again, a medical / hospice social worker could help you figure that out.

Ultimately, your mom needs to make the decision about where and how to live in the time she has left. If you can patiently support her, and let her know you are there in any way she needs, perhaps that will help her to have a frank discussion with your dad before deciding how things are going to go.

Best of luck to you and your family. You are on the right track . . .
posted by pocket_of_droplets at 10:39 AM on October 12

Check and see if there's an advocate at the hospital with whom you can speak. As pocket_of_droplets says, there's got to be a social worker there you can contact. Even if you're not religious, the chaplain can also be a source of comfort, advocacy, and resources.
posted by runningwithscissors at 10:43 AM on October 12

Thank you for these. A little more background on the situation.

1. my husband and I are in marriage counseling, so at least we're doing something about us.
2. my dad's history has been an abusive one all the way around--pushing, shoving, hitting, choking, control of money, verbal, mental. I stay my distance after many years of witnessing it (and now I have PTSD, anxiety, depression but worked out the anxiety/depression). I've always been protective of her since I was 7 years old standing between them to end it. Quite frankly, I'm tired of him abusing her and her turning to me to save her. I'm 38 so it's been a long road. But I also feel compelled to protect her.
3. My worry is the type of hospice care he will fund for her. He's always pinching pennies and complains about her $90 a month glaucoma meds, he won't be too happy to hear what the price of decent hospice care would be.
4. Me and my husband work full time. I work downtown, he has flex hours but uses those to come home earlier to take care of our son so we can control nanny costs (we pay by the hour). We both work very hard to create a stable/calm environment for our son. The last visit to my parents was so verbally volitile, my husand had to take my son out of their house for a walk so he didn't hear the yelling. She has no qualms about yelling at her oncologist, in a grocery store, etc. I don't need the erratic behavior in my house because she doesn't know how to control her emotions when frustrated (or me refusing to let her get out of control).

She literally has zero control over her life at home. He tells her what to do and she jumps otherwise suffer physical abuse. I"m on the opposite end of the spectrum where I tell her it's up to her what to do. THe problem is a life of control left her with zero capabilities to make decisions for herself. She second guesses EVERYTHING.

But talking with professionals might be the best thing and seeing what she wants to do. I do have a feeling it will be to live in my home until the end but honestly, this whole thing is stressful enough on me. But like the one user said, she took care of me.

Totally torn and stressed.

Thank you for the condolences. I wish things were better for her all the way around. She might be difficult but she's still a person.
posted by stormpooper at 10:49 AM on October 12

From what you say, she is involved with Hospice. Have you talked to her Hospice nurse or social worker? Hospice has residential facilities that might be better for everyone involved, and in most places the ability to pay isn't an issue.
posted by dilettante at 10:50 AM on October 12 [2 favorites]

Considering all that you've said about the situation, an assisted living/hospice situation might be a good choice for everyone involved. As something something said, they aren't necessarily lonely hellholes. Your other alternatives aren't so great: either she can stay in an abusive situation with your dad, or you can dial the stress on your own family life up to eleven (or more) by having her live with you.

How does your dad respond to people of authority outside your family? Will he listen to a medical professional, when he might not listen to you or your mom?

This sounds like an incredibly stressful situtation, and it is okay for you to get help via hospice. It sounds like you need it.
posted by cleverevans at 10:57 AM on October 12 [1 favorite]

The idea that this will not impact your husband and child is fanciful. Nursing someone through death is a a major event. You cannot continue to have a normal house because it's NOT a normal house when that is what's going on. You need to really get that.

However, if you can come to terms with that, then given that this situation should not be going on in the first place and sounds horrendous, here are some purely practical answers to your questions:

1/ When is the right time to take her in?

When she can no longer do the unreasonable things your father is demanding she do.

2/ Bedrooms

Your room, baby's room, her room in that order. Infants do not require privacy so use the baby's room as a buffer. If you end up providing what amounts to hospice care at home, be aware this circus may well migrate to your living room if you have bedrooms upstairs due to equipment, beds, etc.

3/ Husband vs mother

If you wait until #1 comes to pass, you may find your mother has a lot less wind in her sails. Also, since you and your husband appear to be the only level-headed people here, point out that this is a necessarily time-limited situation. He's just going to need to deal.

4/ Medical Coverage

See a lawyer. Find out what your mother's coverage is. See a lawyer. Find out what your father's ability to pull it is. See a lawyer.

5/ Marital Issues

You need to be aware that this will be enormously stressful on your household. That does not mean you should not do it but it DOES mean that you and your husband will need extra support. Weekly couples therapy sounds pretty called for here.

6/ Nanny

Your mother will need care and attention during the day and it must not come from the nanny. Get her as much care as you can to, if nothing else, distract her from the nanny if they're all cooped up at home together all day. Call the American Cancer Society, your local county services, your mother's church and anyone else you can think of who will provide regular visits and help in your home. See what the insurance will cover in terms of home help. Do everything you can to regularly get other people in. It's irrelevant if your mother likes them; it's relevant that they are there.

7/ Hospice

Having your mother at home soon, with all of the above in place, and then transferring her to planned hospice care may well be the best solution here. Look into local hospice services and find out more about them because I strongly suspect they are not what you think. They're generally a great option, not a last resort.

Be aware that this will probably cause enormous trauma in your relationship with your father, right down to "and you KILLED YOUR MOTHER" if she dies in your home and not theirs. Mean people are mean.
posted by DarlingBri at 10:59 AM on October 12 [5 favorites]

To answer two things.

1. she's not in hospice care now. Just clarifying. If you didn't know her situation, she looks fine (beyond thin and loss of hair) but functioning on good days, sickly/tired as expected on chemo days. Difficult to eat with the chemo.

2. How does your dad respond to people of authority outside your family? Will he listen to a medical professional, when he might not listen to you or your mom? ---he gets quiet, turns the subject into something else, shuts down, or denies everything. He doesn't listen to anyone. It's his way or the highway.

My dad is a mystery. Out of the blue anger all his life, bullheaded, etc. Probably chemical imbalance and/or brain tumor that affects his behavior. Or at least that's how I like to put it since I've never seen someone act the way he does. It's unexplainable.
posted by stormpooper at 11:09 AM on October 12

I have no answers but just want to "fix" this in the best possible way to give this woman some dignity--despite our history of severe ups and downs. However, I have a husband and a baby. I don't want it to impact them either.

This is impossible, for a couple of reasons:

#1: you cannot "fix" this, because the problems are for the most part out of your control (the cancer, medical expenses, your parent's relationship, your husband's relationshp with your mother, your mother's contribution to your relationship with her.)

#2: you cannot take on responsibility for things outside of your control, specifically those things listed above, and so you should not feel any guilt or remorse over these things. You will, of course; everyone in your situation does. Just know that you shouldn't be, and talk to a therapist to help you deal with these common but painful and difficult feelings before they interfere with other aspects of your life.

#3: what you can do is swallow your pride for a bit and be very nice to your mother, visiting her often and being an advocate for her care. Similarly, you can be very nice to your dad and give him some of the emotional support he's not getting (he probably got that from your mother before this happened, and so now he's being ignored and taking care of her and needs more support than ever before because he's looking at a life alone soon) so that he can get a bit of perspective and start being her partner again.

As for the nursing home scenario, what you need to do is avoid projecting your own distaste of that option on your mom. Ask her what she thinks of all the different scenarios. Ask her what you can do to help, and if you can do those things or facilitate them in some way, do so -- and if you can't, be honest and straightforward and help her find other people who can. Then go to sleep tonight with your emotions in the right place: sure that you're doing everything you can reasonably be expected to do, and continuing the process of grieving that you've already started.

I wish you all the best, and hope she is able to have things the way she wants them as soon as, and as long as, possible.
posted by davejay at 11:11 AM on October 12 [2 favorites]

Oh, one more reason "fixing" this is impossible without impacting your husband and baby: this will impact you, emotionally, no matter what happens with the fact of her care. Even in the best possible scenario, this is going to have an impact, your husband will need to support you, and your child will notice your emotional state (even if they don't understand it.) Accept that and be open about it now, rather than trying to separate the two or pretending your husband and child can just ignore it (as they'd have to ignore YOU to do so.)
posted by davejay at 11:13 AM on October 12

You said she's not in hospice now: get her in it, then. The extent of the cancer you describe...she should be there. Get her oncologist to do the referral. She'll have a team working with her once she's in. They do home care as well as residential, so where she sleeps right now doesn't affect the ability to have Hospice involved.
posted by dilettante at 11:20 AM on October 12 [2 favorites]

When my grandmother was dying some years ago, I remember there being certain Medicare benefits she could only access once she was designated as being in hospice care--including significant things like in-home nursing care. I'm sorry to be vague, but it's probably in your best interests to find out all of her care options through Medicare (especially if your dad is controlling about money) before you take any serious action. I imagine the National Council on Elder Abuse (linked above) or a similar organization could help with this.
posted by Meg_Murry at 11:24 AM on October 12

One more vote for hospice. She doesn't have to be, as they say, actively dying in order to avail herself of its benefits.
posted by chesty_a_arthur at 11:25 AM on October 12

I think you're kidding yourself if you believe that you are going to be able to go through your mother's illness and possible death, as her primary caregiver, in your own home, without it affecting your marriage, your husband, your child, your job, and every other aspect of your life. On the other hand, trying to keep your life untouched by your mother's grave sickness and current problems with your husband is already messing with your head, and therefore, messing with your life.

Sooner or later, I think you are going to have to give up the fiction that you, your child and your husband can somehow remain untouched as one of life's biggest changes rolls through. Severe illness and the death of a parent, beloved or not, make their own schedules, demand your engagement without consideration of your convenience, and show you that your illusions of control, have, in fact, boundaries in reality not of your making.

When it became clear that my mother was dying (a series of small strokes, longer hospitalizations, and the exacerbation of years of other secondary symptoms of diabetes), I left my life in another city, and finally moved to be within 25 miles of my parents, as they'd been hoping I would for 5 or 6 years. It was tough, but it was the right thing to do, for our family, and it preserved my mother's independence and her relationships with other family, friends, doctors and caregivers, in so many ways. And as it turned out, my mother died 3 months after I moved, and then, quite unexpectedly, my father died, too, six weeks later. I was left to sort out their estates, and takeover care of my adult brother, a long term schizophrenic man who'd lived with my parents for more than 20 years.

I simply couldn't have dealt with all of that from far away. And it was mine to deal with, and I knew it, for more than 20 years leading up to it. I was better positioned than you, in not having a young child's demands on my time, or a spouse to consider, but neither did I have the support of a spouse, as you may find that you have. Our situations are not comparable, in many ways.

And yet, it sounds like you know this is yours to deal with, too. If your father can't be brought around to decency in what may be her final days, who else will help your mother? Hospice can be helpful, for those who understand it, and want to go that way, but it is not the right answer for every family; for reasons you cite with your father, it may not be for yours. Even at its best, it is no means of "outsourcing" or "professionalizing" the care of a parent in their final days, any more than having them in hospital at such a time does.

Perhaps you should speak with your spouse, put your child in his care, and go to your mother. That would probably offer the most isolation of your mother's illness to your spouse and your child, and give you the best opportunity to help your mother, and engage with your father. Maybe you'll take a small apartment in your mother's town, to have a place where she can come when she needs rest. Perhaps your father can see his way to helping you, as a means of helping your mother, when he can't directly help your mother without recognizing, to her and himself, that she is getting ready to die. Perhaps in showing a willingness to work with him in getting through these difficult days, some untapped resevoir of humanity in him will appear - such thing do happen, at the death of a long time wife or husband.

I think, in some future time, you will recognize that helping your mother at the end of her life was a powerful and shaping experience in your own life, and a responsibility you'll be happy to have discharged in as honorable a way as you can manage. I wish you strength and peace in the days to come, and I know you will need both.
posted by paulsc at 11:30 AM on October 12 [3 favorites]

I tend to agree with Chihiro and Davejay. You've got so much on your plate right now. I can't see that bringing your mom into your home is the best option.

If you try to care for her yourself, and if she yells and is as belligerent as you say, it will cause enormous stress for you and you may find YOURSELF becoming angry or semi-abusive toward her. It may call out in you some of the behaviors you observed your father engage in toward her. It may make you do those things in your home, near your baby, and you may get yourself into patterns you've tried, hopefully, to avoid till now.

I just really encourage you to try to keep the drama out of your home as much as possible. It's entirely possible that taking her from your dad into your home will not actually make her experience much better. She's used to his abuse. Is she used to seeing you in constant pain, used to seeing your marriage be torn apart from the stress? Do you want her last memories to be of causing her own daughter such trauma, and grandchild as well?

If you decide you must take action, I'd say try to get her into hospice care and try to get her more control over her medical decisions. But I'd really try to avoid having her come into your home. Instead, if she does get into a facility, just try to visit her often with her grandchild and be as supportive as possible, as well as making sure she has plenty to keep her mind engaged. Maybe make family videos that she can watch over and over if she so desires, that sort of thing.

In fact, even now, you might back off from even trying to get her out of your dad's house, and just try to give her joy as much as possible instead of trying to damp out the negative. That is, try to focus on giving her happiness when you are with her, and as much as possible add happiness while you're away as well - maybe giving her art that your daughter makes for her that she can look at while you're not there, etc.

Finally, question yourself and your motivations. How much of you right now is feeling a panicky sense of "must do SOMETHING" and resorting to the most obvious, consistent SOMETHING that you've done, i.e. battle your dad? I'm not saying that's definitely what's going on, but it could be. You're probably running on stress right now. Often stress makes us react in very pre-programmed ways, instead of reacting in the most ideal ways.

Applying that to the current situation: you're tired of trying to save your mom, you've been in the savior role since you were seven... yet you are seeing her as a victim who you must step in to rescue from your dad even now, thus continuing a cycle of who you see yourself as and how you relate to your parents, a cycle that stems from the abuse of your dad. A different way to think about yourself and your mom's roles here is that she has lived her life and chosen to be with him, and that while it may not be the best choice, it's her choice. You may consider that you have this desire to give her dignity by removing her from your dad, but that this removal may itself undermine her self-determination by taking her from the man she has decided to be with, and whom she has stuck by for years. It may be robbing her of a certain dignity that she has taken on herself, perhaps even a martyrdom that she's grown into over the years to give herself a sense of identity - so taking her out of the situation may break her down in a real way.
posted by lorrer at 11:43 AM on October 12 [5 favorites]

lorrer --- you make a lot of sense.

Thank you, everyone for helping. More and more perhaps hospice is the best way if I can do it with her rather than do it "to" her. We'll see. I have some time. I just don't like the fact that it's being proposed as "kicked out" with no options.
posted by stormpooper at 12:06 PM on October 12

Listen to darlingbri & paulsc. They know what they're talking about. The thing is, it's not as simple as moving your mother into your house and then she will lie down one day and not get up the next morning. We all only wish it was so easy but instead, death is a giant thing that takes over. It isn't fast or easy and it is nothing like it looks on TV or in the movies. I have been through it twice in the last nine years.

Death from cancer involves a ton of logistics. You will need a hospital bed for your mother. You will need in home nursing care, which means that there will be hospice volunteers and visiting nurses and so on showing up on irregular schedules all the time. There will be mountains of laundry, adult diapers, feeding tubes, morphine to be administered and 24/7 grieving, unhappiness and stress. Things like mealtimes and just watching a movie go out of the window and normal life seems to come to a standstill. My heart goes out to you; I cannot imagine caring for a baby in those circumstances and honestly, I think you should look very carefully at residential hospice care. I also think you need to sit down with your husband and your counselor and discuss this at length, because whether your mother is in your home or not, you're going to need more support than you have ever needed before in your entire life.

I also don't think it's at all possible for your father to cut off your mother's medicare and, to the best of my knowledge, one thing medicare is pretty good at paying for is end of life care, particularly when cancer is the cause. If you call your local hospice or palliative care people, they can help you a lot. They're used to questions and they may also be able to help you find a social worker or counselor who will meet with your entire family together. I couldn't recommend that more strongly; it will really help all of you get a sense of what your options are, what is generally going on with your mother and what a timetable might look like. Even though your father is erratic and controlling and is shouting about kicking her out, cutting him out of all the decision making right now doesn't sound like a good idea. You need someone who's not directly involved to speak with him and your mother honestly and rationally and my guess is that hospice can help you find that someone.

Try to take the best care you can of yourself while this is all going on and even afterwards, which is in some ways worse. I'm so sorry you're going through this and I wish I had some comfort to offer but unfortunately, all I can tell you is that it does, eventually, get better as time passes.
posted by mygothlaundry at 12:13 PM on October 12

I understand how you want to make your Mom's passing as peaceful as possible. You are up against some big odds. The Dad being the biggest problem.
Even if her home isn't the greatest place..it has been her home for a long long time and many people would be satisfied with staying in their familiar surroundings, even if they do not seem ideal to you and others. Your Mom has doubtlessly put up with your Father for the majority of her life..so it has been her life and not surprisingly, it will be her end too. You can't repair your Dad and make him understand and your Mom is aware of that too.
I vote you leave her just where she is and possibly set up a room for her where she will have a television all to herself..puzzles, books..a really great bed with pretty bedclothes..whatever small comforts she likes. Call her a lot and visit a lot. She may have quite a lot of time left--but having a haven like a nice room is important for her. My neighbor had such an arrangement and her husband spent most of her last days in the garage making things on his lathe while she listened to classical music radio. My male neighbor didn't know how to handle death..and neither does your Dad. In the end Mrs. Neighbor finally went into the hospital and her very last days were there. Mr. Neighbor finally "got it" and pretty much did a good job in the end. We can hope that for your Dad too.
It is so admirable that you would consider putting your Mom up for the last...but it doesn't really sound like such a hot idea under the circumstances.
posted by naplesyellow at 12:34 PM on October 12

One thing a therapist told me when my mother was dying was that people die the way they lived - having a terminal illness doesn't change a person's character and the basic way they handle things. Your mother lived with your father the way he is, and she's dying with him the way he is. These were the choices (albeit most likely sadly circumscribed) that she made. If you think about it, is one of those things really so much worse and unacceptable than the other?

Davejay had good advice, I think. Prepare yourself to be able to offer help if/when she seems like she's able to accept it. It doesn't sound like she's actually asking for your help - and having stuck by her husband for decades it seems unlikely to me that she would ask, or even accept, your offer to extract her. Be there for her in the ways you are able, and take care of yourself and your own family. She may be dying, but she's still a competent adult who can (and, in the end, despite your best intentions and efforts), will, make her own choices.
posted by Salamandrous at 12:38 PM on October 12 [4 favorites]

Nthing Hospice.

My family recently was involved with Hospice. In our case, everything Hospice did was paid for by Medicare. Our local Hospice does not have a facility for people to actually go stay at, but they provided at-home care (not 24/7). Some Hospice do have places for people to go stay.

You mentioned your mother being on chemo. One of the requirements of our local hospice was we had to stop, I can't think of the exact word, care that would make my father better as far as extending his life. What Hospice does is help the sick person stay comfortable until they die. They also offer support for the families also. So I believe your mother would have to be off of chemo to take advantage of Hospice's services. They provided most prescriptions, diapers, oxygen bottles, and would have furnished a hospital bed if we had needed it.

Call your local Hospice organization (if there is one) today. From some of the stories the nurses told us, they are used to deal with stressful family situations.

You have my sincere best wishes.
posted by marxchivist at 12:43 PM on October 12

I highly recommend hospice care. I believe it's free or available at very low cost through Medicare. If she wants to stop fighting the cancer hospice will help her stay pain free and relaxed.

My grandma went into a hospice facility. It was in an old mansion and she had a private room. The nurses were extremely caring to my grandma and her extended family. They made sure she was completely comfortable. Family was allowed to visit at any time of the day. They had a dining room and kitchen set up for families to make meals. I believe Medicare paid for the entire thing.

Your mom sounds mentally competent, so I am not sure if your dad can keep her from getting care. I recommend asking the hospital social worker about various hospices and taking a tour of some and seeing if you and your mom feel comfortable with the idea.
posted by parakeetdog at 12:47 PM on October 12

First of all, I'm so sorry about your situation. I can't even begin to think of how stressed you must feel, especially given your father's insane reaction to this.

I would nth hospice; it's an incredible concept and your mom will receive excellent care there. Part of the principle of hospice is palliative rather than curative care, and they have dealt with all kinds of families, even ones with worse interpersonal situations than yours. I'm sure they can give you advice that will make your mom's last months comfortable and as stress-free as possible.
posted by mynameisluka at 12:56 PM on October 12

Thanks again. I think I didn't realize what the toll of this will be on everyone. Not that I was as naive as "go to sleep and that's it" but I didn't realize feeding tubes, etc. Shit. This really, really sucks.

What I want to give her is the most comfortable, peaceful, stress free, surround her with people who give a crap and can deal with her during her fighting times, and just for her have a moment of dignity. She has never gotten it at home.

As for as her asking me to solve things--she has, many times throughout her life--from her to choose who to live with when she wanted to divorce my dad when I was small (what a choice!) to finding a doctor to now finding a place to go. She has always looked to me to answer everything in her life. She asked me to ask the doctor when/if she's going to die and break the news to her--not the doctor. If I don't then she gets pissed off and throws a fit with the guilt traps of "well I guess I"ll die if that's what you want." I've now totally shut down when she talks; I say nothing yet feel horribly helpless.

And I hate to sound absorbed but she has asked me way too often to save/help her when I couldn't (like asking me to help her when my dad was beating her. Jeeze louise I was 6 years old. How the hell could I help).

Lots of PTSD...but I digress.

And I think more and more a lot of you are right, this is wayyyy too much for me to handle. All I can do is make this the best transition possible.
posted by stormpooper at 1:16 PM on October 12

I don't know your dad, but if he's what he sounds like, he isn't going to put your mother in a home no matter what he claims. Being abusive isn't any fun if there's nobody to abuse, and he wouldn't be forcing her to hang on longer if he wasn't scared to death to lose her. I'd feel comfortable calling his bluff on this one, knowing you could always change your mind if he actually went through with it.

My Grandfather was much like this, he kept dragging his last wife to the hospital a good decade after everyone else knew her cancer-shredded brain was long gone. He would tell everyone that she just "refused to die" and wasn't he such a great person for taking care of her, but the truth was that she'd been declared unfit to make her own decisions long before then, and his choice to keep getting her more surgeries and treatments was the only thing extending her bedridden life. When she finally did die, he didn't even bother to tell the family, so that everyone who "hadn't supported him" would miss the funeral. But once she was gone... he rapidly became ill himself, and now he's the one in a home because he treated everyone so poorly.

Given your previous question I'm going to vote that this is a terrible, terrible idea because it could only compound existing problems. You already know your parents hate your husband and have been pushing/meddling... that would increase by about a million times if your mom were actually in the house. In any case, if she hates your husband enough to actually say so, she probably prefers it where she is anyway (the devil you know, etc.).

Your heart's in the right place... but it just doesn't seem like you are in a position to reasonably help right now, and how much worse would your mother feel if you break yourself in the process or trying? If you were in a slightly better place, I'd probably say it would be an ideal chance for your husband to show whether he's worthy of the title or not... but right now there's just too much stacked against this for it work out well for anyone. Maybe there are little things you can do to help... maybe even just talking to your mom more would help her out. But this... seems like too much.

On preview: geez, I thought I was the only one who had that mother. Guess not.
posted by Pufferish at 1:22 PM on October 12 [1 favorite]

Just chiming in to agree with most:

Esp based on your previous question, you do not seem like you are in a good position to take your mom into your home. Achieving your goals (peaceful, respectful, loving environment) is just not going to be possible given that you are both working full time, have a baby and a nanny, and aren't getting along fabulously.

My father is not abusive, is in good health, is a relatively nice guy... and even so, on day 7 of a 9-day visit, I'm soooooooooo fed up with him. And my marriage is pretty stress-free. I can't imagine dealing with a sick parent who plays mind games with you while not feeling totally in sync with my partner--for MONTHS--possibly YEARS...

Please don't do this to yourself (or your husband, your kid, or your mother). Even if hospice is not ideal, it seems like the best option for you and your family.
posted by tk at 1:38 PM on October 12

Just wanted to share of little of my experience as my dad also died of terminal cancer. We had at-home hospice, which was my dad's choice. They came in every day. They helped my mom with every day chores as well as helping my dad out. If my mom wanted to get out of the house, they would stay with my dad until she came back.

I will say, though, the death doesn't always have to be so dramatic. My dad was not in diapers, not on oxygen, no feeding tube. He only took oral pain medication in the last few days. Honestly, he was very lucid until the night before his death. He woke up the next morning and when it was obvious he was going, my mom called me and my sisters to come over. We called my brother on the phone, who lives across the country. My brother told him he was coming, my dad said "you are?", and about 5 minutes later had passed. Obviously death is different for everyone, but I wanted to let you know it's not always worst-case scenario.

What everyone has shared is really good, and you definitely need to be aware of the harsh reality, but it's not always bad. My father had a very dignified death.

Good luck to you. I'm so sorry you have to go through this.
posted by fresh-rn at 1:40 PM on October 12 [1 favorite]

You must feel terrified, frustrated, helpless. Your mother is difficult to live with but no one deserves such abuse and neglect, and it's worse because she's so ill.

Do you need to make a decision based on your father's threats, or can you take time to think about things and come to an agreement with your partner?
posted by kathrineg at 3:23 PM on October 12

It really does sound like, given the circumstances and family history, residential hospice as soon as possible is the best bet.


Thanks again. I think I didn't realize what the toll of this will be on everyone.

It helps to think of it as an endurance sport. You need to nourish, rest, and pace yourself for the marathon.
posted by DarlingBri at 4:26 PM on October 12

You seem to be viewing the nursing home option as one that will inevitably result in her being alone during the rest of her life and dying alone.

My grandmother spent several years in a nursing home, and most of the time a family member was able to visit her every day. It's not inevitable that a person in a full time care facility die alone, although I personally feel that regular visits are very important even if death is some time off.

At the very least, you may as well look into what nursing homes have a good reputation in your area, which ones have hospice care available, where they are relative to work and home. Get her on the waiting lists just in case this turns out to be an option that you need later.

If you do decide to care for her in your home, you will not have what you currently think of as "a normal house". Shutting her off in a room to hide her away from your husband and child might be more lonely than life in a nursing facility that has group meals in a dinning hall and activities she can participate in.
posted by yohko at 5:17 PM on October 12

Wow, what a horrible situation. Like others above, I urge you to contact a hospice care in the area. While there, explain the financial issue (the father threatening to cut off Medicare/supplemental payments) and ask if they can refer you to a lawyer. Surely this is not legal, or rather surely there is something a lawyer can do to correct this problem. From this question and your previous one, it seems that using money to gain power is a problem, and I think a lot of that can be corrected with a quick visit to a lawyer.

You also said that she asked you to talk with her doctor. It's not a fair position that you're in, but I think that request has some merit (for different reasons than her reasons, though). It seems to me that your mother has been bullied around for so long that she is literally not able to make her own decisions in really tough matters such as these. She must be mentally traumatized. A talk with her doctor will provide you with some factual information about her prognosis, will give you a chance to learn more about end-of-life care and the physical realities of dying, and will allow you to share with the doctor that she's facing some extraordinary mental/emotional/physical abuse. This will help the doctor help her better, and maybe he will have some additional ideas.

You must know this, but things like telling her to cook dinner after chemo -- when even the smell of warm food will make her nauseous -- and threatening to cut off her medical care funds is... I don't have the right word for it. It's wrong-abusive-scary-bad. You're a good person for letting her lean on you, even if the load is heavy.
posted by Houstonian at 2:02 PM on October 13