Strokes and not the nice kind

Fairyland

Just posting bc there is no one else to talk to about it. Mom was doing ok in assisted living, though totally not getting why she was there- no inkling that I have spent 14 months of my life caring for her and no way can she function independently anymore, but I had to go back to my own family, job and home in another distant country. 

Anyway, she was found lying on the floor of her apartment, badly bruised and out of it, and eventually got airlifted and has had another stroke v similar to the last one. 

I have held off rushing over, there are family (her in-laws) kindly driving over an hour each way daily, but they are very old and it is too hard on them really.  

Nothing broken, and the hospital is doing huge number of investigations. Today they called and asked if they could reverse her DNR to do a procedure to investigate her congenital heart defect, in case they could do surgery. Um, no. She was 100% clear on that DNR, knew in great detail about the heart, and could have had that heart surgery at any point in the last few decades.

I voiced my concern that she had memory issues and she might deteriorate cognitively further, as she had before during sedation for her cancer therapy.

This is the first time I have really been called upon to make this sort of decision- the doc did recognise that she was not able to make decisions of this nature, which is a first!

SusanB-dil

oh, Fairyland - so sorry.  

She was adamant about the DNR, so I wouldn't go against her wishes, either.  But what a dilemma for you.  Are they asking you about something other than her heart issue?  

agree - you need to take care of yourself and your family.  Glad you have someone who can watch out for her - maybe they could go every few days if it is difficult on them.

Fairyland

Thanks Susan B!  Yes I think the cardiologists were excited to “find” the hole in her heart but my parents had it investigated decades ago locally and opted for non-surgical treatment all along. They were aware it might lead to TIA, which it did, and now strokes.  If she could talk I’m sure she would say no way, not now certainly at 83.

My reading on this site has really helped me know what to do, better I think than I would have - that aggressive treatment at this stage of life needs to be questioned with regard to where will this test lead? Will it just prolong life but not joy? And the side effects and risks loom much larger, especially further loss of precious cognitive function.

MN Chickadee

Not all health professionals understand this phase of life. They are so used to doing whatever they can, whatever it takes, whatever is available that they don't always have experience with withholding that care when a PWD's circumstances call for it. I even saw this when I was POA for a non-dementia family member during end of life care. Many doctors wouldn't not give me straight talk about likely outcomes or refused to be the one to tell me this was the end of the road. It's hard for all of us even doctors. 

She made this decision for herself long ago when her mind was intact and you are carrying out her wishes. Honestly that's not half bad, often we don't have that kind of clear direction from our LO for a specific health condition they were aware of before dementia. Hard as it is to make those decisions it sounds like you did the right thing. It's so difficult to be making decisions that we know could accelerate our mother's decline or death. BTDT. But it that doesn't make it the wrong decision, just hard on our hearts. Asking where this test or treatment will lead is so important. It so often leads to prolonging suffering in the long run. When my mother entered the later stages of Alz half of my mind wished she would just pass away quickly from something else, and the other half did not want to ever let go. I would still give anything for a few more moments with her. The journey is so full of ambivalence. 

Fairyland

Thanks Chick!

I have had a lot of affirmation from kind friends and other relatives, that I have done a good job getting things in place for her.  Ambivalence is the word! But my parents were always clear about not wanting to have heroic measures, long before there was anything wrong. I’m pretty sure money was a big factor in not having the heart fixed when it became possible in the 1970s, (pre-existing condition) but also both were very anti-doctor. Dad fell and actually fractured his hip and didn’t get care for it for months-too late to do anything by the time I persuaded him to go to doctor! Put it down to arthritis. Wouldn’t take any meds either. Except cigarettes.

She is being stepped down to rehab (she did not say No, no, no! She is agitating to get out of bed but they won’t let her yet. Today they will look to try to either keep her in University hospital or alternatively, apparently our town has just as good facilities, if there is a bed  which would be very helpful for my aunt and uncle not needing to drive. I told them if they can’t get hold of me, aunt can decide.

She has ongoing speech problems and mobility after 4 days, so this stroke is worse than the last.

Aunt also thinks she has worsened cognitive issues (but hard to tell since so does aunt).

Fairyland

Rant alert. Argh, going round in the inevitable circles since my relative and the social worker keep consulting me separately and telling me different things, with a 6 hours time difference.

The question was, which rehab? Neither is clearly better, so I was fine with the nearest one, connected to the current hospital, but Relative told the social worker she wanted to visit both, SO social worker called late on Friday and told me they could and would wait for relative to do that. So I said ok, we can wait for relative to visit both. Just before  I go to sleep at midnight, after a very long day at work, relative emails me to ask if *I* really want them to visit both. I emailed back, saying relative gets to decide this, since on the spot. So relative emails me at 3 am to again ask, do I want her to tell the social worker that? Of course I don ‘t see it until  social worker has clocked off for the weekend.

 It’s not true to say I don’t care, but it doesn’t matter to me- one is some miles nearer to relative -the other is more in touch with what has happened, but I have talked the docs and this is just a run of the mill, mild stroke, with small residual effects, same as before (which is why Mum is wanting to get up and go, and just needs some balance and speech rehab). So I think either place will handle the situation well, in my experience, and, I already said repeatedly to all parties- on this issue, let relative decide - I won’t be answering the phone or seeing an email for a few hours.

From experience with my dad, mum will be given a few days at most of exercises then sent on her way.  I feel like this is really not an emergency and I have done enough - if relative had butted out, mom would be rehabbing already. Strokes are serious but not every one is catastrophic and this one is not catastrophic.

Now relative fretting about having to retrieve mums clothes and do mums laundry, going back and forth over an hour, while she is in rehab. If family wasn’t there, would they leave mum naked? No. I am not travelling 4000 miles and disrupting my whole family and friends and work colleagues lives again, to wash mums frayed underpants. Just buy her some new clothes with her money, she has plenty (for now) and needs some new clothes anyway! I have a good Visiting Angel I have emailed to ask (not phoned, since it was now the middle of the night there!), but again, it is now the weekend, so I can’t expect that to fall straight into place over the weekend, can I?

I am already going back in 7 weeks in any case, I can move that forward somewhat probably, but can’t drop everything this instant.  Mum has insurance and lots of professionals looking after her- what would happened if she had no family? Surely the facility and hospital can cope for a couple of weeks? They charge enough!

May flowers

That sounds exhausting. It sounds like they are trying to make sure they are following your wishes on her care but nevertheless, it’s tiring. My husband is POA for my FIL and whenever siblings provided a week or two of respite in the past we either got calls on every detail or being left out of decisions depending on the relative. Both are difficult, but the latter was worse (and created problems we had to undo). 

Overseeing care is draining. You have done a good job getting the right support system in place for her!

ButterflyWings

Gracious PQ, you are doing the right thing (again!) by staying put. It really is interesting how your DM would already have begun rehab without your relative’s intervention but hopefully it will not complicate her recovery from immediate stroke impacts. Mobility is so important. 

And you made me laugh a couple of times - as if they wouldn’t clothe your mom without you flying 4000 miles to handle the skivvies. And I saw what you did with that Amy W reference. When my elderly LO had a catastrophic stroke a few years back, and I was her designated person, her exact response to the rehab option was “No, no, no”. I told her she was channeling a late celebrity & had to sing a bit of the refrain for her (she was a music lover but at age 99, not up on Ms Winehouse). The young Dr got a real kick out of that and was relieved that there was agreement and no cognitive or acceptance issues of what had transpired with her condition in just 24 hours. 

You have gotten SO much accomplished in the last year and a half!!! And returnjng to your family, home, and life after getting her in good hands... stay the course. Well done! I hope you can get some sleep since they don’t realize your time zone. Maybe send them the time zone converter link so they can quickly calculate and understand they are reaching you with time sensitive questions at 3 AM(!) 

Fairyland

Well 3 days into mom rehab, seemed sort of ok.  Relative who is 81 and not well themselves, got called at work Friday during important meeting so of course took the call, in case mom was dead I guess, to be told my mom has severe damage to left side of brain as a result of the stroke nearly 2 weeks ago. That isn’t what the neurology dept told me, last week, but maybe it is more apparent now and in the rehab situation. She can talk but with difficulty and more alarmingly seems uncharacteristically goofy. Also the rehab seems incapable of calling me and have put the relative front and centre. They didn’t even try, I have no missed calls. 

Anyway, relative ordered to take time off work to attend a stroke education course next week - I will call Monday and find out if they are capable of zoom so I can attend. And if they can’t do international calls or any other forms of comms,  to tell me important news.

In any case I have a situation at home so I am not available, and she is being kept in the residential rehab for 3 weeks they said - sounds like she is cooperative and trying hard to get better, as was always normal for her, she was a very brave and determined person! so I will leave returning a bit longer until I can settle my long-neglected affairs: accident at work (not involving me but serious so extra avalanche of tasks for me), and neglected DH, college age kids, and sick old dog, and my own home is a shambles. 

Everybody needs me! I only have you guys here. For that I am thankful.

CatsWithHandsAreTrouble

Oh my Fairyland! That is certainly a lot going on for you and your family right now. Thank you so much for taking the time to update us. Hopefully you can catch a much needed break sometime soon! Hang in there!

Fairyland

Thanks CWHAT and I hope the same for you and all stressed-out caregivers.

I went to a “Death Cafe” at my Chapel last Sunday, mainly because I’m a trustee and wanted to see what it’s like, it’s a new monthly instead of annual activity requested and now run by one of the users. It was really lovely, despite people’s sad stories, it helps a lot to share and know you aren’t alone. And yes, there were also some in dementia limbo - mourning the loss(Es) of someone who is still alive.

Anyway, aunt went to the education session. I called, was told she is doing fine, but was neither phoned back nor sent an email to be able to attend the session remotely, so they just don’t seem to engage with very long distance carers at the rehab hospital- oh well!

She’s now meant to be turfed out of rehab 6 July, and aunt is going to look at memory care apartments at the AL to see about moving her from one apartment to a different one. I will have to ask the facility to handle the move with help from the visiting angel and no doubt aunt will keep her oar in, I’m glad she cares but sorry it’s yet more hassle for her. I have my own health appointment on July 10 (post cancer checkup) so everyone will just have to muddle through this stage without me for now.

I AM glad she is moving to MC though, AL wasn’t helping sufficiently for her to engage with most of their offer, and she couldn’t really handle going out shopping for her own toilet paper etc. I believe it has an enclosed garden which she would probably like, rather than a windswept outside of the building with nothing to look at even if she did go outside. Silver lining maybe?

I guess I will start a new thread soon about moving from AL to MC. Yay.