Navigating the end

[wisingup]

Hi everyone - I haven't been by the forum in a few months.  I finally achieved VLC with my uBPDm only because she has now declined cognitively to the point where she cannot make a phone call, so I no longer receive regular weepy guilt-tripping phone calls that I need to visit her before she dies.  She's been dying for about 20 years now and I've been trying to be NC or VLC with her for the past 10 for my own mental health.  I manage all of her financial/legal/tax stuff from afar, while my brother manages medical stuff and visits her weekly.

Mom is in a AL facility & yesterday she got one of her friends there to help her call me.  Same old refrain - she's dying & she wants to see me and my daughters before she goes.  The difference this time is that I do think her time is coming.  It's impossible to know how much longer she has, but she is 87 and has been rapidly declining the past 2-3 years.

She can only walk very slowly now, with her walker, and cannot navigate any public areas like Wal-Mart so she is confined to the facility.  She can no longer make a phone call unassisted & has issues with holding a conversation.  She may soon be moved to the Memory Care part of her facility.

So I and my younger daughter will visit her this weekend and will do a Facetime with older daughter who lives across the country.  I'm dreading it but will manage. 

This is how it will go, based on how well she's able to converse that day:

1.  She will go on about how long it's been since she's seen us
2.  She will spend about 30 minutes complaining about ____ (fill in the blank)
3.  She will interrogate me about my life
4.  I'll do my best pleasant grey rock & not mention any of the real issues or events in my life.
5.  She will get angry at me because she knows I'm holding back, then she will make snarky remarks, pout and/or cry.
6.  I will calmly hold it together while we are there and when we leave I will be physically tense and emotionally exhausted.

Now that she's got a friend to help her call me, I'll get another call soon & the cycle will repeat.  I've gotten over feeling like I need to come running whenever she calls, but I do need to navigate this last stage of her life in a way that I can live with after she's gone.  One step at a time...advice welcome!

[Poison Ivy]

My one suggestion at this point is that you pace yourself. The end could be soon or it could be a long time from now. Decide how often and for how long you can bear to visit your mom if she lives for several more years. I think that whatever you decide will be good enough.
My mom is almost 97, has various health problems, including dementia, and seemingly has been at death's door several times this spring and summer. I see her regularly but I don't go more often during the "maybe this is it" periods. 

[NarcKiddo]

Is there room in there for you to concentrate on all the stuff you do for her even though you are VLC? Could you maybe prepare a report/crib sheet  on her financial status, investments, whatever, and then speak to her about this. Taking up some time with practical matters, which she might find mentally taxing, could curtail her ability to concentrate on the more tiresome stuff, maybe. And even if she does not want to hear it, it could be helpful to you just to remind yourself that you actually do put yourself out for her. Plus finance is important so you can use that as an excuse to bang on about it even if she does not really want to hear. Just a thought. Ignore if not helpful.

[Poison Ivy]

 

[wisingup]

My one suggestion at this point is that you pace yourself. The end could be soon or it could be a long time from now. Decide how often and for how long you can bear to visit your mom if she lives for several more years. I think that whatever you decide will be good enough.
My mom is almost 97, has various health problems, including dementia, and seemingly has been at death's door several times this spring and summer. I see her regularly but I don't go more often during the "maybe this is it" periods.

Thanks Poison Ivy - this is helpful.  I know that her death isn't imminent, like she's got probably a year or two left, but I'll do this visit & maybe another at the holidays, then something like quarterly.  I also think I'll get a therapist to help me through this phase.  My dad's death 20-some years ago hit me harder than I expected though we weren't close, but it was a sad ending to a sad life & that brings on a lot of guilt & introspection to those left behind.

NarcKiddo - I think your advice is solid.  I hadn't considered sort of taking control of the conversation - usually I just show up as summoned & grit my teeth through the ordeal.  I could come prepared with some topics & keep the conversation focused on her as much as possible.  We do need to discuss some medical & financial stuff so we can start with that.  Thank you!

[TimetoHeal]

Isn't it wild how just as we get to one plateau in dealing with our parent(s), another phase comes up that we have to learn to navigate?  I think you are so wise to think and plan ahead.  I also think working with a therapist is a great idea.  I am starting with a new one next week and I've just about decided I need to stay in for life regardless of how well I think I'm doing at the time.  LOL.

I hope your visit goes better than you think. Does having your children involved mediate her waifness at all?  With my mom, it does a little bit still at this point, which is why she doesn't like them to come with me.    I like NarcKiddo's idea of having some pre-planned topics to talk about. 

Interesting, my brother and I have the same "division of labor" like you and your brother, except I am the local person. 

[wisingup]

Hi TTH - yes, my mom will be on somewhat better behavior if my daughter is there.  My kids haven't seen her in over 2 years, mostly because I want to shield them from her.  The last time younger D saw her was on AL move-in day - D showed up to help & I sent her away because of how out of control my mom was that day.  Both daughters know why they are being shielded from her.  The relationship was mostly performative anyway & they see the difference between her and their other warm, loving grandma that they can have real conversations with.

[wisingup]

Just a little update.  We did visit a couple weeks ago & it went fine.  My mom is really going downhill - walks at a snail's pace with her walker, cannot put together coherent sentences. She has some strange delusions, like she has a small bird figurine that she seems to think is alive.  But she seemed upbeat and we kept it short and pleasant.

However, she called me a couple days ago in a whole different frame of mind.  Suddenly she hates living in the ALF & wants...something.  Something she is unable to express with her limited capabilities.  I called my brother & he said she hates that she cannot speak with her friends & thinks that her friends are now judging her and thinking she is stupid and saying mean things about her.  Unfortunately, I cannot think of one thing I can do about that.  She CANNOT live with either my brother or I for our own mental health, plus she needs more physical care now than we could give. And the problem with her speech will follow her to any other ALF.  So I'm going to have to call her back and say that there's nothing we can do - her own health is the issue & at least she knows people there.  Or I could just not call & hope that she forgets, but that doesn't feel right. 

Actually, as I'm typing this I'm realizing that she is quite possibly having some paranoid delusions.  I've met several of the ladies she made friends with and they were all friendly & warm, and took very good care of her when she came back from rehab after breaking her hip.  I'm sure the relationship is different now, because my mom really can't be part of a conversation, but that's not their fault.  Maybe it is just kinder to let it lie and not upset her by saying "You have to stay there."

[NarcKiddo]

My husband's mother is having similar issues. In her case she actually has zero short term memory, so she thinks people have not called when they have. She wants to be taken on outings but her health mostly forbids it, and she wants people to visit endlessly when they live at the other end of the country or, indeed, abroad. He started by telling her the precise truth but he's realised it is easier all round just to say "yes, yes we'll see what we can do about that. Maybe next week.". She doesn't seem to realise that next week never arrives.

If you are dealing with cognitive issues it probably is kinder to let things lie if you can. If she brings up the subject again, maybe think up something that might satisfy a toddler. It sounds mean, I know, but if she has got to that stage there is little point in provoking a tantrum by saying an outright "no". That's probably what I would do, anyway.

[TimetoHeal]

My mother has been having paranoid delusions as well.  She thinks everyone from the carers at her ALF to the other residents to the Amazon delivery man are "out to get her", "judging her for being 'uppity'" , or "have it in for her".  My mother has not been diagnosed with any dementia or anything yet, so I wonder if it is not part of her uPD. 

I agree with NarcKiddo on how to handle it.  9 times out of 10 my mother forgets and moves on to something else or decides the person she was upset about was actually just wonderful after all. 

[wisingup]

Thanks so much NarcKiddo and TTH - I think you're right.  Now that a few days have gone by, I don't feel like shaking things up at all.  It's quite possible that she forgot about that conversation immediately.  My brother is with her once or twice a week, so he'll share if she keeps bringing it up.

NarcKiddo - my mom also wants to be taken on outings but really cannot leave the facility.  Even getting in and out of a car is dangerous for her now and she's not comfortable being away from her own bathroom for long due to her IBS.

[Liketheducks]

I'm so sorry.   I would let it lie.   My mom isn't there quite yet, but I've found some good out of just telling her, reassuringly, "it will be ok".   Not specifically outlining how or what I'm supposed to do to make that so, but leaving things vague.

When I first saw your list it reminded me of something wholy irreverent that I did to get me through a family holiday gathering with FOO.   I literally made myself a bingo card of all the things I could predict my family would do.   It helped me lessen the anxiety going into the holidays.   Hang in there.   

[wisingup]

Thanks all - I did decide to just let things lie.  Then she called a few days ago with the same vague complaint & this time made a reference to wanting to end things.  I feel like she ramped it up because nothing happened the first time.  Again, there's not a damn thing I can think of to do about it.  She kept bringing up the group "A place for mom" - as if finding her a new AL home would improve things.  It won't, and would be a miserable logistical nightmare for my brother and I that we already went through once.  I'm taking notes for when I reach this stage of life - I hope I am in enough control of my faculties to accept my limitations and not make my kids feel guilty and responsible for my happiness.

[NarcKiddo]

There is probably nothing you can actually do about it, so trying to think of things is likely just going to give you stress. And even if you did something it sounds like she is the type to find fault anyway. It's always good to learn what we can from the experiences of others - but you do not sound like the kind of person who would make your kids feel guilty even if you do lose any control of your faculties.