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Experience v advice.

GillPJ

Registered User
Jun 2, 2020
80
It's quite hard to accept some forms of advice when you know your "patient". This post is purely so others can compare.
Mum is on a roller coaster of sleep and awake/alert.
Being diabetic, she has to eat, and needs a protein rich diet doe her bedsores.
Consensus in the medical profession appears to be - keep blood sugar levels high, but higher blood sugar levels mean less inclined to eat. Of course when she's in one of her sleep phases, she doesn't eat anyway.
She's been in hospital for 2 weeks with a UTI, and when she came out, they'd changed her insulin regime completely. This in itself is annoying because she's been stable on one long-acting dose in the morning for years, now we have a smaller long acting dose in the evening and short-acting when necessary.
The problem is, it's such a small dose that her blood sugar is constantly high. In consultation with the nurse, I've upped her dose by 2 units, and it does seem to be at a better level now. Before it would get up to 1.90, never below 1.30, adding another 2 units it's now between 1.20- 1.40.
That's the diabetes.
Mum hasn't been diagnosed, but I believe she has the symptoms of Lewy body dementia. Twitchy legs, unable to find words and slurred speech, sleeping a lot, totally immobile and incontinent/constipated now. Some days perfectly lucid, others a complete zombie, or even both in the same day.
Take this morning, she woke up (or was woken up) a zombie, hardly ate a few mouthfuls, this evening she's smiling and ate a good sized portion of food.
I take each day as it comes. When she's in her sleep phase, it's very easy to think she's not going to make it, but just let her sleep and she seems to rebound eventually.
My biggest worry is messing up the insulin - too much or too little - so tonight I didn't give her any until I was sure she'd eaten enough (if she hadn't, I would have decreased the dose).
To my mind, it's all very well specifying a certain dose of insulin, but you can't take that on it's own, it has to be flexible.
The roller coaster part is the bit I'm finding most weird. One day she can sleep for 24 hours and not verbally respond to anything, the next she can ask for a dvd by name and watch 3 episodes in a row.
It's certainly a weird learning curve.
 

GillPJ

Registered User
Jun 2, 2020
80
I forgot to add, one of the things on leaving hospital was a prescription for morphine (equivalent) patches. They were so not needed. Why increase the incidence of sleeping? In hospital, they scrubbed her clean, insinuated that I didn't do enough to keep her clean, but it seems to me that that's all they're interested in, not her pstchological wellbeing ar all.. They've written her off otherwise. Before she was released from hospital, the hospital doctor said, she's not happy here. Well of course she's not, but I do get the feeling they'd written her off as go and die at home.
 

jennifer1967

Registered User
Mar 15, 2020
1,283
Southampton
depends what strength morphine patches. i have to have morphine patches and believe me they dont make me sleep as still in pain. what a daft question the doctor asked, theres not many people that like being in hospital with or without dementia.mental health and psychology services, in my experience are sadly lacking and no follow up afterwards either. what has happened in this world hey
 

GillPJ

Registered User
Jun 2, 2020
80
Well, I think we've reached the point of no return. the doctor came today - no infections, blood pressure normal, she's lucid when she's awake, she just has this overwhelming tiredness, and that stops her from eating. Two sips of water, one is dribbled out. On the bright side, sleep is the way to go. At least I tried my best.
 

jennifer1967

Registered User
Mar 15, 2020
1,283
Southampton
Well, I think we've reached the point of no return. the doctor came today - no infections, blood pressure normal, she's lucid when she's awake, she just has this overwhelming tiredness, and that stops her from eating. Two sips of water, one is dribbled out. On the bright side, sleep is the way to go. At least I tried my best.
im sorry to hear that and couldnt have tried harder.
 

GillPJ

Registered User
Jun 2, 2020
80
I'll just add that I have been so lucky. She hasn't had the aggression issues that other people mention. She's immobile so no wandering. The fact that she can still smile when I say hello makes my day. The two of us have been blessed on this journey.
 

GillPJ

Registered User
Jun 2, 2020
80
Well this is where my experience runs out. Today she's asleep and dribbling, I can't get her to drink or take her medication. I have to keep turning her as she is so full of mucous and dribble. I know that's and end of life stage, but what to do? Of course it's a Sunday so I can't ring the doctor. I've found an unused syringe, so I could possibly get some water into her, though that's probable futile as she'll dribble it out again.
Our normally helpful GP has been no help at all in this respect. This is no fun at all for either of us. I'm sure she just wants to be left alone without me mauling her about all the time. :(
 

canary

Registered User
Feb 25, 2014
13,958
South coast
I know that's and end of life stage,
Im sorry, when I first read your first post on this thread I thought it sounded like end of life, but didnt know how to phrase it.
Contact the GP on Monday and say that you think she is at end of life. The GP can prescribe a "just in case" box which will contain all the medication that might be needed - including one to dry up the secretions. The GP can also refer you to the District Nurses who will come in, check on her, administer medication and can advise what to do.
Im so sorry that you have been just left like this.
(((((((((((((((((((((((((((((hugs))))))))))))))))))))))
 

GillPJ

Registered User
Jun 2, 2020
80
Thanks canary, she's really gone downhill since I wrote the first post. She had a dribbly coughing bout the day before the doctor came, but he didn't suggest anything. I'm afraid the nurse (comes every other day for bed sore dressings) isn't much better, both he and the doctor seem to have a 'see what happens' attitude.
I just managed to get her to take a sip of water and one of her tablets, so that's a start.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
72,142
Kent
Hello @GillPJ

Please ask the doctor to make sure you have everything necessary for palliative care. Your mum could experience discomfort or pain and a package needs to be on hand to help her through this.
 

GillPJ

Registered User
Jun 2, 2020
80
Well, she had half a dozen teaspoonfuls of food tonight, and a couple of mouthfuls to drink, the problem seemd to be not that she doesn't want it, just that she can't remember to swallow. I don't like leaving her sitting up in bed all night, but that does seem to be the optimal position.
 

GillPJ

Registered User
Jun 2, 2020
80
Still, it was a nice time for a one-sided "you're the best mum in the world" which made her smile. I'm struggling to find things that make her smile these days.
 

GillPJ

Registered User
Jun 2, 2020
80
"How's my lovely" made her smile this evening.
I called the doctor this morning, they're going to put her on a rehydrating intramuscular drip tomorrow (she's not dehydrated yet, but will be soon). I managed to get her tablets into her this morning by crushing them in a couple of teaspoons of fruit puree, and she's had a few more mouthfuls of that plus some water during the day and evening. We've put her fentanyl patches back on as well, since it hurts when I move her.
It does feel like prolonging the inevitable, but what else can you do? The doctor asked if I wanted her to go to hospital, but there's nobody there to say "how's my lovely?" so, no.
Just a tip that may work for someone else, she'll take the fruit puree but often doesn't swallow it, but I find following it with a sip of water helps.
 

GillPJ

Registered User
Jun 2, 2020
80
Well, I feel sure we're getting close to the end now. She had moments of lucidity yesterday (I did wonder if it was terminal lucidity) and ate and drank a bit. Today she's been sleeping with no response for about 24 hours, no, she did say yes once when I offered a drink, but she didn't swallow the sip. Not dehydrated because of the drip though.
I feel really horrible having to roll her over to change her incontinence pants, but it has to be done. Her blood sugar's on a downward path so we're stopping insulin.
I've been very stoical up until now, but today I tickled the back of her neck and a tear rolled down from one of her eyes - probably just coincidence but brought tears to my eyes thinking of her helplessness and vulnerability, and lack of communication.
Today I've had to start planning ahead, because French paperwork is a nightmare.