"Run over by a reindeer" is not an option
December 25, 2014 1:17 PM   Subscribe

My very difficult, very sick elderly grandmother doesn't have a lot of in-family care options left. How do we unpick this mess? Bonus family drama inside.

My eighty-year-old grandmother has terminal cancer. At least, we think she does - she's both deaf and borderline delusional when it comes to bad things happening, so even if she's been told that this is the case she either didn't or wouldn't hear it, but her oncologist doesn't want to see her again and her tumour is visible through her clothes. She also had a minor stroke last year which has limited her mobility on one side.

My father was her sole carer until he died unexpectedly at the beginning of December. She made his life extremely difficult for the last decade, since my grandfather died. Her only other relatives are a sister who lives far away and has a very sick husband, my mother (her daughter-in-law, who can't stand her and has suffered her bad behaviour for thirty-odd years), my sister (20, college student at a university 200 miles away) and me (25, living and working 300 miles away).

She has a history of being extremely manipulative and changeable, and of lying. Examples from today include telling my other grandmother that she didn't have any food in the house (we brought her shopping two days ago, and she has a freezer full of food) and that no one's brought her any Christmas cake (we brought her some with groceries a week or so ago). She struggles with buttons, so my dad suggested getting her a device to help with this (this was a few months back), which she declined. She then said that no one had bothered to get her the button aid device. Several years ago we took a family vacation, and on the last day she got mad and pulled out a vicious character assassination of all of us - it was unprovoked and extremely nasty, and when she got home she told everyone that it was the best vacation she'd ever been on and we'd all had a lovely time.

She is also more than reluctant to ask for help. She wouldn't agree to have a stairlift fitted, until my dad found her crawling up the stairs on her hands and knees. He bought it without asking her, as she'd already refused, but she now uses it every day.

She also refuses any kind of elder social care - she claims that some ornaments went missing when my grandfather had carers when he was dying and thus doesn't want strangers in her home, and she also doesn't want to pay money for social care (she would likely have to contribute based on her income and savings - we're in the UK, but she's relatively well off). She was saying today at lunch that no one from social care had bothered to contact her, and when my other grandmother (who uses some elder care services) told her that you have to request those services, she made a face and changed the subject.

Things came to a head today when my mother, who isn't dealing well with losing my dad, came to pick her up for Christmas. She wasn't ready and annoyed my mother a lot, and the situation was my mother's last straw - she had been trying to look after her since my dad died, but now refuses to talk to her, see her or help her at all, as the cost to her own mental health of doing so is proving too great. She also refuses to tell her that she's cutting her off, and simply plans not to answer the phone and never to see her again (this is not untypical of my mother).

My sister now feels entirely responsible for my grandmother, and also feels that my mum has kind of shat all over her by making it her problem and refusing to do anything more. She's also terrified that if we do nothing she'll end up finding my grandmother's corpse in her home, and she's already resenting me for being around less than she is as I don't have university-length vacations and can't make the trip as often. She's having daily panic attacks following my dad's death and is finding this situation a massive extra stressor.

I'm kind of in the "if you alienate all of your relatives, this is going to happen and it's kind of your problem to deal with" camp. I'm happy to do what I can when I'm here, which I am until the beginning of January, but when I'm 300 miles away there isn't a lot I can do. I don't feel the deep sense of responsibility my sister does, especially when my grandmother has done nothing to make the task of looking after her any easier (she seems to go out of her way to make things more difficult). I don't want to leave her to the wolves, but I also don't intend to move back here to care for her. I can understand why my mother doesn't want to, but we're still left with the problem of who and how. I'm also taking enough lithium that I can't really feel anything, which might be why I'm currently relatively calm about the whole shitshow. I'm in problem-solving mode, but this one doesn't seem to have a solution.

This is all complicated by the fact that my dad's death was recent and sudden. My grandmother's oncologist seemed to indicate he didn't expect her to be around in November, but she's still here and my dad's not and we're all kind of stunned by that.

What can you do for an older person who has no one, refuses help, lies and manipulates and generally makes life difficult? She also has a habit of putting on a better face for doctors, etc. - walking further than she normally can on her own, even if it hurts her, to prove to the doctor that she's fine. Even if we forced a social care assessment on her, I'm concerned that she'd make a big show of how independent she was, and then expect my mum or my sister or me to continue caring for her when the assessor went away.

I would love to hear from anyone who has advice for this situation, especially UK-specific. I know she is a sick, sad, lonely old lady who just lost her only son. I am not unsympathetic to that, but I've also spent the last twenty five years watching her manipulate everyone around her, including me, and I'm running low on compassion. I would be very grateful if commenters could take it in good faith that she behaves as badly as described, and that we're genuinely at the end of our ability to care for her. Talking to her about any of this is made harder by her deafness and her refusal to listen when it comes to difficult topics, and, in truth, it's a conversation we're all afraid to have.
posted by terretu to Human Relations (11 answers total) 9 users marked this as a favorite
I think someone should talk to her doctor(s). In the UK, there should be resources for that (and probably also for a way out of this).
posted by Namlit at 1:27 PM on December 25, 2014 [2 favorites]

I don't know the answer to your questions and I'm not in the UK, but I was reminded of this question from last month, and especially this answer about explaining to people who are in a position to help her access services why she needs that support.

Bottom line I don't think any of you are obliged to help her if she's making it so difficult and costly for you to do so, but it seems like bad things are going to happen quickly if she is left to her own devices. A google search leads to these guys: FirstStop Advice is an independent, impartial and free service provided by the national charity Elderly Accommodation Counsel (EAC) in partnership with our local and national partner organisations. The service is for older people, their families and carers. It aims to help you get the help or care you need to live as independently and comfortably as possible. Whether you want to remain living where you are now, or to move to somewhere that suits you better, we are here to discuss your options. Maybe call them and tell them what you've said here (including your grandmother faking good for authority figures) and ask for some advice? I suspect that there are more resources that nobody has suggested because it's seemed like your family were going to provide the care.
posted by Cheese Monster at 2:01 PM on December 25, 2014 [2 favorites]

Are you positive she's lying about these events, or is it possible her memory may be affected? Paranoia and agitation are consistent with some diseases that sometimes emerge with age. I agree that her doctor would be the person to start with.
posted by cotton dress sock at 2:16 PM on December 25, 2014 [5 favorites]

When things are forced on her, your grandmother seems to accept that.

Dial up whatever services you need to, whatever happens, happens.

Get therapy for yourself. Your family dynamic is extremely unhealthy and from your wall of text, I gather you don't have a really wide view of things. This will hurt you in life until you gain a deeper understanding. You will act out. You will misinterpret others. You will feel anger and indignation where you could be feeling peace.

I guess my advice is for you to get help for yourself.

Let the grandma thing go after making a few easy phone calls to elder services on her behalf.
posted by jbenben at 2:32 PM on December 25, 2014

For clarification: I'm already in therapy. Lots of therapy. No one in this situation is emotionally healthy, the house I grew up in wasn't emotionally healthy, it's caused me a lot of problems and I'm dealing with them using all the tools I can access.

The lying/memory thing - it feels perhaps most like she's selectively choosing what to hear/believe and then making up a fantasy version of events based on that to tell to others. Which, on the receiving end (e.g.when you've been trying your best to help her with shopping and she makes it sound like she's being left to starve) feels like lying. It could be something cognitive to do with age or the stroke or the cancer, but it's been going on since I was old enough to notice it, and that long predated her health problems (she was in her early sixties then).

Calling her doctor was something I wondered about, and I'll definitely do that as soon as they re-open.
posted by terretu at 2:45 PM on December 25, 2014

You do not have ANY responsibility for your granny. Nor does your sister, and if she decides she wants to insert herself into this morass that's on her, 100%.

What I would say to my sister is this: "Grandmother is at the point where she needs to be in assisted living. She is too old and sick to be cared for easily at home and it's not appropriate for her to expect her grandchildren to sacrifice their lives for her. I know you love her, but if you're resentful, and you're doing this out of guilt, then it's not a loving action. She doesn't appreciate it. Climb down off the cross, and let's do the right thing and get her into an appropriate living situation."

Accept the fact that your granny may need to 'committed' to hospice, or a place where she can be cared for properly, although if her oncologist won't see her anymore, and there's been no mention of palliative care, there is some seriously fucked up something going on medically, and family member should be involved to make end of life decisions if that's what needs to happen. I too suspect that she's not terminal, but a chat with a social worker and her doctors should bring some light to the situation.

Even if she's not terminal, and threatens to live a long time being ornery, mean and hateful, she needs to be in assisted living, especially if she has memory issues or otherwise needs someone to help her with daily tasks like toileting, bathing and eating.

At some point, as independent as granny wants to be, it's not for her to decide. I get it when family members dance around like marionettes when a beloved elderly relative refuses to "go to a home," even if it's the best solution for that person. I'm always baffled when the family has had a turbulent relationship with the person and they're still dancing around. At some point someone has to say, "Granny, none of us is equipped to help you the way you need help, the counsel/state says you need to have an expert level of care. Sell your house and check into the Ritz of assisted living places."

It sounds like everyone involved is miserable. I give you permission to say your piece and to extract yourself from the situation. If your granny refuses, and you have no backing from your sister, mother et. al, then wash your hands of the situation and keep saying to them, "I've told you what I think needs to be done, and until we move towards a solution that isn't stressing you out individually, please vent elsewhere."

The problem with dysfunctional families is that they rarely get healthy all together. You sound like the one who's going to cross the finish line first, so you may have to drag the rest across one at a time.
posted by Ruthless Bunny at 3:11 PM on December 25, 2014 [21 favorites]

Not in UK, but in Europe, and I've been through something very similar with my Gran, who died two years ago.

In retrospect, what worked every single time, but not right away, was talking directly about the problems with her. We all shied away from it, because she was always angry and often invented stupid "revenges" towards those who spoke with her about stuff she didn't want to hear (mostly my cousin and myself). But it worked. After a while, she changed her attitude, and let us help her in ways we could manage - including her moving, not to a nursing home, but to a place where it was realistic for us to help her with some assistance from the municipality.

This was only possible after the two of us (cousin and me) sat down together and agreed to not let her manipulate us or play us out against each other. We also agreed to take charge, regardless of other family-members' opinions or intentions. It seems to me this is the conversation you need to have with your sister. I spent much more time taking care of our Gran than my cousin did, but I was not angry with him, because we had clearly different life situations, and we had the talk. And he supported me in every way during the last and worst two years (including at some point where I was very strained, getting Gran to give me a largish sum in cash, so I didn't need to take on extra work to pay my rent).

One of the difficult things was to let us go with her to the doctor, so we could find out what her situation was. And to sit in when the people from the council visited, and all of these things. We could never have managed that drama if we hadn't worked together, and she would have had some terrible last years if we hadn't. She wasn't being rational at all when she was trying to control us and everything else. Both our fathers died before her (she was our maternal grandmother), and we could use our experiences with their deaths to convince her that knowledge and trust will provide a better life for all involved - it takes a village to care for someone, and to manage the time after they have died.

I'm not saying this was ever easy - we are still struggling with some issues she left us, these years later. But I am convinced that by working together, and respecting each others' approach, my cousin and I managed to get through this - and take care of our Gran in a dignified manner.
posted by mumimor at 4:05 PM on December 25, 2014 [5 favorites]

This is the kind of situation where talking to AgeUK (the charity formerly known as Age Concern) may help as a prelude to contacting council social services. (If your father was receiving carers' benefits, the DWP will be bureaucratically aware that your grandmother is now without a carer, but that's not always joined up with council provisions.) As long as she's not served by a council that's in a funding squeeze -- sadly more common these days -- you should get a decent response. Social workers who deal with the elderly usually have a good eye for someone putting on their best "I don't need any help" performance.

You can only do so much when your grandmother still has capacity. Sometimes there's a split where family get ignored and professionals are listened to, or vice versa, but if she's resistant to all of them, it's really hard.
posted by holgate at 4:24 PM on December 25, 2014 [6 favorites]

Call your grandmother's primary care provider - not her oncologist - and tell him that your family is concerned that she isn't safe to live independently and family members will be unable to provide in-home care. He may not be able to share medical details with you but this information will be good for him to know.
posted by pintapicasso at 4:42 PM on December 25, 2014 [2 favorites]

If it's possible, try to convince her that it would be a good idea to designate a healthcare proxy/power of attorney (or whatever the UK equivalent of this is). Not only would such documents make things MUCH easier for any family member stuck with dealing with her business at the end of life, they could also help you get the accurate information from her oncologist on what her diagnosis and prognosis are. I'm assuming that various family members aren't so fed up with her that they would not respond if she had a serious medical episode or wouldn't take any action regarding her estate if she died.

It's unlikely that your sister will find a corpse in her house - more likely that your grandma will have a fall and either break her hip or otherwise injure herself such that she will be unable to get herself back up. If she is willing to wear a Medic-Alert necklace or bracelet that might help ease your sister's mind. She could also go through the house and do a quick safety audit - removing any throw rugs/clutter in the way from the bed to the bathroom, putting in a few small assist railings and night lights on the way from the bed to the bathroom and so forth. After doing these things (or offering them and getting shot down) I'd say that the responsibility has been met and you/your family will just have to wait until she is either too confused to keep objecting to your assistance or until something happens (like a fall) that renders her unable to continue independent living, which is a pretty common occurrence for elderly folks who live alone and is their ticket into assisted living/a nursing home via rehab, generally. (Note this advice is based on an American perspective - things may be somewhat different in the UK).

it feels perhaps most like she's selectively choosing what to hear/believe and then making up a fantasy version of events based on that to tell to others.

This sounds reminiscent of confabulation, which can be a symptom of neurologic issues - although it isn't actually a conscious decision/choice on the person who's doing it's part, even though it can seem that they are deliberately being obtuse or deceptive. If it's always been that way and is exactly the same now, maybe she is just a pathological liar, but if this has gotten significantly worse in recent times, I would indeed mention it to her doctor.
posted by treehorn+bunny at 6:02 PM on December 25, 2014 [3 favorites]

If it's possible, try to convince her that it would be a good idea to designate a healthcare proxy/power of attorney (or whatever the UK equivalent of this is).

It's the Lasting Power of Attorney for health and welfare, which is distinct from the LPA for property and finances. At this point, it's tricky borderline territory: LPAs are far easier to get sorted out when someone's in relatively good health and wants an attorney in place for a more distant future; if someone's incapacitated and there are no attorneys, then it enters the domain of the Court of Protection. If a person has mental capacity but is making decisions that family and friends consider misguided, that's not enough to get the state involved; trying to persuade someone physically frail with cognitive issues to set up a LPA may be interpreted as coercive.

Again, I think AgeUK may be useful here, and it may be worth the family pooling resources for a chat with a solicitor about the spectrum of capacity and decision-making.
posted by holgate at 6:30 PM on December 25, 2014

« Older He doesn't like my Christmas.   |   Envious and fixating Newer »
This thread is closed to new comments.