Strokes and more strokes

Fairyland

To recap, After getting my mom into AL in April, she was starting to settle, I went home to another country to try to get my life back in order, (and to have covid and various other crises of my own!) then she had a bad stroke in June. She had ALL the treatment and rehab and then AL took her back and did a lot to get her back to near normal, along with an extra Visiting Angel I have in the wings, and they spend every morning with her chatting mainly which has really helped with her speech (the other residents are all deaf and can’t understand moms mild English accent). Mom was able to shower and dress herself and walk unaided. This is costing a fortune and that’s another thing I need to work out. her investment income so far is covering it but I think it will start to eat up the principle at this rate.

I have come over for one month to try to clear out her house, though realised I won’t achieve that in a month with working remotely as well-also the wider family is demanding my attention! and yesterday she had another stroke- the VA saw it so no fall or lying on the floor bruised and unconscious like last time. This one is too soon after the last stroke and risky to have the aggressive TPA treatment and it’s a lot milder than the June one, but still in the local hospital. She seems okish but can’t speak again and quite confused. 

I have such a headache. 

M1

Fairyland I am so sorry--silver lining that it happened while you were already here.Uncertain future though for sure, have you got a plan b if she can't go back to AL?  I wonder if hiring a care manager here would help you?

Fairyland

Thanks M1, I have the manger of the local Visiting Angels as my Geriatric Care manager, she said I can call her that! She certainly goes above and beyond. 

She is the one who called me, her staff member reported it to her immediately, after getting help of course, and she called me before the facility. I tried to call nurse but no answer (not surprising as they were dealing with ambulance etc. so I went over and saw for myself as they wheels her out, the facial appearance is a giveaway or Here we go again 

Part of the problem is phones, moms US phone doesn’t work well when I am in Uk so I had just changed to the foreign number but the computer numbers don’t fit in the forms here !  And folks here don’t know how to dial an international number.  

​fesk

Fairyland, I am sorry to hear this and hope your mother is comfortable now. I will keep you both in my thoughts and prayers.

Fairyland

Well she does have nine lives and evidently hasn’t used them all yet. Has got better in the hospital, with just treatment as if for migraine and anticoagulant,  hydration, eating well.  I think she retained a lot of the recent rehab and speech therapy strategies- I can see how she stops and thinks I.e. about how to rephrase something, instead of getting frustrated, also she can still write clearly though it doesn’t always make sense.  She still forgets she shouldn’t walk unsupported but the hospital has that under control I think. 

I so appreciate the well wishes and prayers, and my heart breaks for those with so much worse problems than we have. The vascular dementia is a b*gger as we say in UK but we seem to so far have dodged the bullet of the unruly behaviour and steady progression ever downwards- my dad didn’t have any dementia at all when he was in his final year, and he was very unruly for long spells, now I realise it was hospital delirium in his case.

Also since I’m here I wanted to say that although she  “gets out the violin” every time she sees my aunt, who then relays to me urgently how miserable my mom is, now I am here I have found she is out of her room with another resident most of the time, a lively 101 year old who has a bigger room and a huge tv- they sit together at meals, or in front of tv and doze, or the lady makes mum accompany her on her frequent walks and stair climbs!.  I came to speak with the nurse last week and then had to leave for another appointment  -  I couldn’t find mum, as usual, then as I left I saw them walking hand in hand outside, wearing plastic leis from that day’s lunchtime luau! 

Reminds me of one of my kids who reported she had no friends at school, then I spied on her on the playground and she was in the centre of a group organising a game!

mommyandme (m&m)

Fairyland, that’s lovely! Thank you for sharing that dear picture of your mom and her friend.

ZackFootInMouth

Something I was setting up for a friend's grandfather was a den with a bunch of one touch devices - a television stuck on the baseball channel, a phone with only speed dial buttons, a one button microwave - a lot of this involved yanking apart the existing buttons and installing a miniature PC go-between with a simple button (there's a way to centralize one computer to handle the tasks, but we wound up with "a computer for each button")

It's like we were making a stage for the grandpa show. Though it wasn't foolproof; grandpa would still walk outside and get upset about something there, or the pets would wander in, or grandpa would manage to press a hidden button that would require re-hiding it and re-aligning the set-up.

Fairyland

Zack that sounds like you could have an online store that would really help a lot of people. I think vascular dementia especially because the losses are more stepwise and they can be on a plateau level for extended spells. Sadly not true with my mom, 3 strokes in 7 months.

I’ve been halfheartedly trying to find an even simpler device so mum can video call with one touch, and organising to return the Grandpad which was good while it lasted but she can’t scroll etc and just gets frustrated, and often forgets she even has it, but after seeing her yesterday in the rehab hospital  I thought really it probably won’t work no matter how simple.  She doesn’t know where she is, why, nor can say more than one word, occasionally. 

She had no idea that she has for example,  a microwave in her apartment or a calendar, even though they are right there as big as life. She says she has no way to cook anything, or to buy anything, while looking straight at the instructions in large print or the minibus schedule to go to the store and the wallet in the purse she never lets go of. Total apathy,  lack of perception and that was prior to the last 2 strokes. Maybe it’s just as well or she would cause a fire or go out and get lost.

She typically does as she is told and now she can’t speak hardly, I guess can’t express an opinion enough to refuse. So they will keep doing the rehab as if she is going to retain all the tips and tricks, but I thought it was pretty pointless even after the first stroke especially the speech therapy side.

Now I’m convinced she had one or some damaging TIAs during the pandemic isolation, that set us on this nasty trajectory of VD, since she has no consciousness whatsoever that she has ever had a stroke, never mind several!

quartlow2

ZackFootInMouth wrote:

one touch devices - a television stuck on the baseball channel, a phone with only speed dial buttons, a one button microwave

This is seriously a much-needed technology! I can't tell you how many times we wished we could find these kinds of things for our parents! Well, we finally found a good speed-dial only phone with photos or names on the buttons.

Technology gets harder and harder to use as we age and it's not just a cognition issue. Our fingers also get stiffer.

ZackFootInMouth

Fairyland wrote:

I’ve been halfheartedly trying to find an even simpler device so mum can video call with one touch, and organising to return the Grandpad which was good while it lasted but she can’t scroll etc and just gets frustrated

You could ask around to Frankenstein/MacGyver an add-on to the Grandpad. In my scenario, we got a "wireless Bluetooth button" that was Velcro'd to the coffee table by the TV remote (it's got an internal battery like a smoke detector)

https://www.amazon.com/Aqara-WXKG11LM-Switch-Wireless-Remote/dp/B07D19YXND/

It was easy to install, tricky to set up, and hit or miss on the effectiveness, but being a physical button and not a touchscreen was a bonus. It gets linked to the Apple Home App and it can activate a program (like smart plugs to control lights) .... Again in my scenario we had to Jerry rig a chain of programs that in the sum of their parts, acts like a speed dial for video chat. (An alternative was to have a preprogrammed timer for the video chat, it would auto dial to you at a certain time of the day every day.)

Fairyland

Feeling burnt out even after a long weekend away with daughter which was wonderful- I tried to forget about mom lying alone in the drab hospital room. Aunt visited Sunday for me and reported horrified as I expected, mom just lying there looking at the wall, no one around, no one even handed her reading material or turned on tv and how would she get better? And so far she can’t say more than one syllable (usually No!).

I went in myself today but mom was elsewhere having PT and the very slow lady at the desk struggled with her computer to try to find out what their plan is since I and the AL have had zero communication from them for the week mom had been there- she said she knew it was discussed at discharge meeting -  she ignored an alarm going off and then a patient fell so I said forget it I will come back later!  Sorry I distracted her now.

I already asked my visiting angels to take over with mom when I go home next week whether she is in hospital or in facility. 

I wish there was a way to have a simply “call x” button where mom could find it but that seems to be too hard to organise, for me anyway. She can’t talk anymore in any case and if the progress this week in acute rehab is a guide, will never speak again. If anything she is worse than when she went in, definitely in despair/apathy has taken over in terms of memory and speech. I hope her mobility will improve so the AL facility will take her back to her apartment with extra help. At least she can sit with her friends at meals and the staff their are friendly and kind (and have a bit of time for the residents social needs as well as physical). 

mommyandme (m&m)

Just 10 days ago you said your mom was hanging out with another patient and doing ok.  I thought that sounded lovely.  Now… not so much.  I’m so sorry she’s not doing well.  

This just stinks! 

Fairyland

Well admittedly that fun with a friend for her was just before this latest stroke. I initially thought this one was less severe than #2. But she didn’t get the clot buster this time because the neuro thought she might end up worse or dead. But not being able to speak is so horrible- just wish the stroke #3 had killed her, to be brutally frank. Her quality of life for the things SHE enjoys, being outdoors, movies out, meals out with friends,  classical concerts- is so low now. Eat sleep stare into space, in an institution just like she feared. Struggle for 5 min to say one word, backwards. She’s in prison. And I know it will only get worse.

Anyway I have been talking to the AL and the extra care I have had to hire there since stroke #2 in June, so someone speaks with her for a few hours a day, and they are mobilising to get her back there. It is burning through her funds, $8k a month now. I know it costs more in other regions but it’s a lot for someone who spent nothing on enjoying herself- I wish she had!  

I leave in a couple days and then will come back after I deal with some work issues this month that can’t be done remotely. 

hashmlbn

Hey there, sorry to hear about your mom and her strokes. I know what you're going through. Stay strong! That's a lot to deal with, and I'm sure it's giving you a headache. Have you spoken with her doctors about preventive measures, like anticoagulants? ELIQUIS (apixaban) is a popular option that's been shown to help lower the risk of stroke in people with AFib. And with the ELIQUIS coupon 2023, it can be even more affordable. Just a thought, but hopefully it can help ease some of the stress you're dealing with. Sending positive vibes your way!