Two things: early exit and missing home

[KatBee]

Two major things making life extra hard:

1. My mom never thinks she is going to live past the next two weeks. Months ago she won support from her entire health team for her plan to stop eating and drinking, and was going to in October, but since then has kept moving the date up by slight increments. I don't want to lose her, and I hate that her options have come down to this choice, but it's agony living constantly with the feeling that your loved one only has two weeks to live, constantly, all the time. I've tried to talk to her about it, but each time she maintains that the new deadline is the real one.
2. I'm going nuts not having my own space. I left my apartment (and husband) in BC to come to Ontario to care for my mom. I live at my dad's (they're divorced) since my mom lives in a bachelor apartment. I feel like I'm always being watched by one or the other of them. My husband was just here for a visit, and we splurged on hotel for two nights and it WAS SO GREAT. We still spent days with my mom but had own own place to go back to. I could even have a crying fit in private at the hotel -- recently I've done all my crying in public, since I don't want to have a meltdown at mom's or dad's.

Just throwing these thoughts into the universe -- feeling grateful for a listening community out there.

 

[lgelb]

Kat, that sounds very hard. Have you tried explaining to her in "I statements" that she is only pushing you away before the actual end date? Does your dad have any role in this?

If you left, what would happen care-wise? Does your mom have financial resources for third party care? I only ask because your last resort is putting that on the table.

Does your mom exhibit any other behavior or thinking to suggest major depression and/or FTD? Have you talked with her doc(s) about the constant rescheduling?

We are always here to listen and throw thoughts/questions back your way...

--Laurie

 

[Nuts]

Kat, do you think perhaps your mom is afraid of you leaving and keeps offering this deadline that he doesn't really mean in order to keep you with her? Or perhaps the two week goal is her way of not facing the fact that she is going to have to move to some place large enough for people to care for her. She may not even realize that this is what she's doing.

I understand the privacy issue. I spent only 7 weeks staying at my sisters or on a friend's couch while caring for my mom several years ago and how I craved my own space and a few moments of privacy.

Keep tossing...we'll listen and respond (responses you can always ignore ). Hugs.

 

[pdcraig]

Hi Kat,
Your mom is the writer, yes? I remember you talking about her decision before and thinking how tough that must be for everyone involved.

In my own experience, my PALS didn't see the point of living anymore the minute he was diagnosed. He doesn't want to die but he hates being sick. He was and is very depressed and wanted things over quickly. We're now in month 41 and although his attitude probably hasn't changed that much, he still laughs and smiles and I think he's come to see his life, although very different from what he imagined, is still worth while. Maybe your mother is experiencing a little of that too, those two weeks weren't so bad maybe just another two? Her resolve to stop eating and drinking and go out on her terms is always there but maybe just not yet. I can't imagine how hard that must be for you.

We all need our own space to get away to regroup. I'm glad you at least got a couple of days.

Keep throwing those thoughts out here, we're listening.

Paul

 

[scaredwifetx]

Kat, I also wonder if your mother is afraid you will leave her or maybe afraid of giving up at this point. I have heard so many times on this forum that PALS choices change as the progress. Right after diagnosis my husband was looking up ways to end his life on his own terms. Now, he is just taking one day at a time.

Can you talk with your mother and explain how you feel? Can you call the ALS Association to see if they can help with some respite care or any family members who can help out and let you have some time alone?

Maybe you can put her down for the night and before going to your fathers, spend some time at a local gym or pool to clear your thoughts. I put on headphones and listen to sad music for a while and cry until I have released the bad. I then play upbeat dance music and sit in my car dancing. Of course I stop at a local park in a quiet spot so as not to freak out anyone and end up in a straight jacket.

Keep venting here Kat. We all understand and hopefully someone will come with an idea to help.

 

[Dizmom]

Kat, My PAL has now three times refused his tube feeds and says he is done. usually a day later or so he is ready to be fed again. I get so frustrated when he does this. I have to bite my tongue when he says a day later to feed him I want to say NO, you made up your mind of course I can't, and the next time he does that I want to say is this your final decision, we are not going back. You can't keep putting me and our two sons on this roller coaster. But of course we can't. How do we handle this petulant behavior?

 

[Atsugi]

Kat, My PAL has now three times refused his tube feeds and says he is done. usually a day later or so he is ready to be fed again.... How do we handle this petulant behavior?

First, let me say I really do understand how difficult and demanding it is to be a CALS. We all have a spot in Heaven reserved for us, just for the patience we exhibit, if nothing else.

Second, others may disagree, but I feel the PALS should get what they want. I always thought my job was to make each day, each hour, as comfortable, pain-free, and stress-free for my PALS.

So I hate to say it, but I suggest finding a way to cope with this frustration and let your PALS have it whatever way he wants it at that moment. Try to smile and support them in the here-and-now.

--Mike

 

[Nikki J]

Diz I am not seeing the whole picture of course but to say no more tube feedings is to say I am ready/ want to die. That is a very hard place to be at and if he changes his mind the next day it could be whatever physical or psychological pain drove him to say that is a little better and he feels he wants to live a little longer. Or the fear of death has overcome the desire to end it. I can see it is a roller coaster for you but maybe you now know to wait to process this as you have seen the pattern. Does he have hospice? They may be able to help with his comfort Does he / do you have a clergyperson. The issue here is how and when he dies and I think that needs to be talked about between you but there may be things he and you need to say to a third party.

 

[Dizmom]

Thanks Nikki, good advice.
Mike, I do exactly as he asks but it seems like he only does it when something doesn't go his way. Thats ok I guess its his only way of blowing off steam, just very sad and hard for those around him. Thanks for understanding.

 

[Nikki J]

If he is really doing it when he is thwarted that changes the picture somewhat though I still think the issues I raised play into it. It sounds manipulative but also sounds like he is in a very fragile state. There is an element of you'll be sorry when I am gone and/ or need to assert control and/or need to be assured that you still want him around. Tough situation. A clergy person or counseling might help get to the root of it

 

[gooseberry]

My pals is back and forth on some issues right now, also. I think it is a way to retain a bit of control. Doesn't make it any easier or better for cars though.

 

[KatBee]

Thanks for your responses, everyone!

It's been a funny few days. I was feeling really frustrated the day I started this thread, and then the next day I found out I've been invited for an interview at McMaster medical school and the fact that mom and I could celebrate that together helped lighten the mood for sure. (One thing off my bucket list for our time together )

We're having yet another weekend that is supposedly the last weekend she will work on this book review (yes, Paul, you're right on ) but it actually is coming together finally... I think...

On top of all that we just heard that the Supreme Court of Canada has decided to allow individuals to apply to their provincial court for permission to seek physician assistance in dying. That's going to be a whole mess in itself, I'm sure, BUT it does offer the possibility for a much more peaceful death than having to stop eating and drinking (and smoking and coffee, which honestly are huge, too). Sooooooooo now all that's going on.

Just to answer a few questions, my mom is on disability and has no other funds or assets, so there's definitely no money besides what's publicly funded. She says she is not depressed and went through a complete psychiatric assessment (not fun) to qualify for health care support around stopping eating and drinking. She steadfastly maintains that the delays are purely because she isn't done this review... but of course I sometimes have doubts about the full truth of that. She has said a few times that she wishes she had just done it earlier, and I'm not sure what to make of that either. I kind of wish she'd talk to a counsellor, because although we do talk about all of this, maybe someone less directly affected could help her work out some things that she is feeling but hasn't fully registered. She won't see one by herself, but said I could ask about seeing one together -- she's worried about his damaging our relationship so she wants to work on that, but not on what she is going through personally... I'm still thinking about it. She also refuses to see anyone at all except me, my husband when he is here, the home care workers (some publicly funded hours), and one childhood friend of mine on occasion. Absolutely no family, and not even any friends. I deeefinitely need to start getting some exercise. Just need to make a plan of some type -- any type. SWT, I love that you dance it out in your car <3 <3 You go girl. That sounds like a great routine to me. Really what I'd like is to convince my husband to work on his grad degree from Ottawa, where we could get our own apartment (and pay a lot less than our current place in Vancouver), but unfortunately I think I'm unlikely to be able to convince him to move/work distance (though it's possible!).

Diz, that is so hard!! It's puts you in the position of either tearing your heart out on a regular basis, or being forced to discredit your pALS and disconnect from their actions... plus, if your pALS is like my mom, life gets a lot harder for those days with insufficient food. I'm sure I would be a terrible patient, myself, if I were sick, but my heart goes out to you, Diz. End-stage mourning takes time and energy and most of us don't expect to have to muster that multiple times for the same loved one. There's this line from Shakespeare I've been thinking of recently: "Unhappy that I am, I cannot heave my heart into my mouth." (The character is refusing to make a big speech about how much she loves her father.) It feels like that to me, sometimes. I could do it once, maybe -- but not once a week.

A big hug to each of you,

Kat

 

[Dizmom]

Congrats KAT on Medical school interview!! In order to keep going I always have some future event that I can think about when things get hard! Right now its a vacation in March! A whole week in MX. PALS brothers are coming to take care of him. My only worry is what I will look forward to after that.
Good Luck on the interview. I love the quote. Im going to put in in my blessing book where I write quotes that make me feel good. That is another thing i do to keep up my spirits.