Recovery from Stroke

Yokel

LE
The Rehab people were due to see Mum last Friday (the day of the storm) but sensibly did not due to roads being covered with fallen trees, and then there was a nice power cut all night and all day. This week was half term, which for some reason meant that they could not visit.

Why is everything so ***ing slow and hard?

The OT and Physio were meant to be coming this morning, but Mum suffered a migraine so nope. I think that the migraine was caused by stress and being threatened by the office that provides her carers that she must accept a new one who she feels physically unsafe with...or else. Mum has been wound up over the weekend with disturbed sleep and appetite.

Another tick in the box - I guess that is what happens when you separate the doers from the decision makers. They are not very sensitive to human factors, such as people not wanting to have falls or objecting to being told that "your knees are in the way" or "it does not matter if you fall as you have carpet".

I am not making this up - she was told these things.
 
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Yokel

LE
Talking about things going wrong - I have acquired the Communist virus. I am doing my best to minimise contact with Mum, and have been wearing a mask near her for days. Several lateral flow tests over the last few days were negative but two were positive this morning. I am worried about Mum as she was unable to be vaccinated. As COVID-19 is in the house, do I need to test and report every day?

The nurses cannot come in unless they are in full protective gear.

Just bloody typical - I hardly see anyone but I suspect that I caught it off my visiting brother. Physio/OT due next week I had better not still be ill.
 

Yokel

LE
Just to add to the fun - Mum is now on a course of antibiotics again, as her leg became sore and bled (and infected) after COVID-19 uncertainties caused the mid week nurse visit to be abandoned, and the minor would was not caught as quickly as it might. Just typical, when the rehab people where meant to be coming next week.

She might be well enough by next Wednesday, but normally antibiotics do pretty much knock her out for a few days.
 
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Yokel

LE
The infection in her leg has gone, and so has the Chinese lurgy, but the same old issues persist. I worry about not cleaning her teeth and mouth. Meanwhile, the rehab was delayed by the company that provides the carers getting a strop on when they sent a new carer who was not very good. By that I mean she was unable to do the job. The company went back to Social Services who insisted on sending her in again - with an Occupational Therapist to observe and see if things were done correctly.

This happened on Monday. The OT had to help for safety reasons. Preempting her report the office suggested things that would be opposed by everyone.
 
I worry about not cleaning her teeth and mouth.
When I was recently undergoing chemo, there was a risk that I might suffer mouth lesions, abscesses and infections due to the fact it might kill the cells lining my mouth and around my gums. I was prescribed standard Corsodyl mouthwash and told to use it after every meal and if possible not rinse afterwards. I was told it would be a reasonable substitute for not being able to cope with a toothbrush.
 

Yokel

LE
I will speak to the nurse about that - I am not not sure if she will be seeing one today. Is there a mouthwash that can be safely swallowed? Mum has no problem drinking via a straw so that could be an answer. @Fang_Farrier might know.

Spitting out would be an issue as she is not in a proper sitting position - yet.

A cleaner mouth would help her taste her morning crumpet and cappuccino. She says that since have COVID-19 her sense of taste has been impaired.
 
I did see another patient having his mouth cleaned by a nurse using what looked like a sponge on a stick. I was specifically told not to swallow my mouthwash but maybe there are others that are safe to do so.
 

Fang_Farrier

LE
Kit Reviewer
I did see another patient having his mouth cleaned by a nurse using what looked like a sponge on a stick. I was specifically told not to swallow my mouthwash but maybe there are others that are safe to do so.

Sponge sticks can be dangerous as the sponge can detach from the stick.
 

Fang_Farrier

LE
Kit Reviewer
I will speak to the nurse about that - I am not not sure if she will be seeing one today. Is there a mouthwash that can be safely swallowed? Mum has no problem drinking via a straw so that could be an answer. @Fang_Farrier might know.

Spitting out would be an issue as she is not in a proper sitting position - yet.

A cleaner mouth would help her taste her morning crumpet and cappuccino. She says that since have COVID-19 her sense of taste has been impaired.

Water, absolutely nothing wrong with water.
Cheap and readily available.
Safe to swallow.
 

Yokel

LE
She drinks water (and cappuccino, milkshakes, fruit drinks) but I am not sure how much it cleans teeth!

If she could drink a diluted lot of mouthwash, and then spit/dribble it out without swallowing, then that should be better. Of course we had expected her to be sitting again by now,

Must speak to the nurse.....
 
Water, absolutely nothing wrong with water.
Cheap and readily available.
Safe to swallow.
And this is a good example of where fluoridation of water can be a benefit but I'd rather it was optional, e.g., via bottled water, rather than being forced on us, which it seems it soon will be.

Interesting natural sources of fluoride: Office of Dietary Supplements - Fluoride

I didn't know that tea was a source of fluoride, except in towns with fluoride in the water supply.
 

Fang_Farrier

LE
Kit Reviewer
She drinks water (and cappuccino, milkshakes, fruit drinks) but I am not sure how much it cleans teeth!

If she could drink a diluted lot of mouthwash, and then spit/dribble it out without swallowing, then that should be better. Of course we had expected her to be sitting again by now,

Must speak to the nurse.....

You want the SALT as it's a swallowing issue.

But I am talking about mouth washing with water.
 

Yokel

LE
I have been very frustrated by the lack of visits by the rehabilitation team - Physiotherapist, Occupational Therapist, and sometimes an assistant. This is partly due to lack of therapists, and partly due to demand. The disruption caused by things like Bank Holidays does not help. It is very frustrating, particularly with summer coming up. She should be more mobile, have been able to improve her strength, and hopefully stand with the return stand. Without wishing to sound selfish it would be better if she needed less physical lifting and shifting, and did not need two people for some basic things.

Now she is on antibiotics again for cellulitis - which will knock her back. I wonder if there is a connection between that and her leg bleeding when being dressed for the wounds she still has - although it is much better than a month or two again?

Why is progress always so painfully slow?

Additionally she is being messed around by the office of the company that provides the carers. Apart from changing her morning visit to an earlier time without warning, then chopping and changing things willy nilly....
 
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Yokel

LE
If is is not one thing it is another - or at least it feels like that. Last week Mum had a leg infection which antibiotics knocked this. The last day or so she was had diarrhoea etc. We have been unable to get any rehabilitation activity.

She needs a period of intense rehab, but try arranging that? I just feel guilty for not being able to do more, particularly during the last few weeks when I have had my own issues to contend with.
 

Yokel

LE
Why is it so difficult to get some rehab? After losing Comms with the Physio/PT we contacted them ourselves - they was a complication why we could not easily do so last week but I will spare you the details - call it logistics for want of a better term. Unfortunately the Occupational Therapist is away this week (half term?) so they cannot come out until next week.It is so frustrating. Mum just needs a decent period of rehab so she can make progress and consolidate it, and not have a period of weeks between appointments.

After leaving hospital, Mum spent most of her time sat in a chair and was able to stand with the aid of a ReTurn stand for washing, dressing, toileting, and transferring to the wheelchair to go outdoors. However we needed house modifications which took forever to arrange. She was having physiotherapy which included things like walking with some sort of aid - but the house modifications were the limiting point. She did enjoy going outdoors fit gardening, looking at the fish in the ponds, and barbecues.

A piece of nasty and unsuitable equipment caused cuts which led to infections, and that coupled with the stress from other things, contributed to a series of falls. As a consequence she has been in a bed ever since, far better in terms of posture, but at first she was very weak and there was no question of lifting her, then she had infections, the wound on her arse eventually became a hole like having a large chop cut out, etc.

That is all healed now, the wounds elsewhere have settled down, her blood pressure has stabilised, and she has been lifted into her wheelchair using an electric hoist. She also also eating pretty much normally now. As I am writing this Mum is complaining that she has run out of breakfast crumpets. She has also recently restarted eating bananas, which will help with Potassium and they are full of Protein.

However, as she has lost strength it would take quite a bit of work to get her to be able to use the ReTurn stand. If she could use that it would be a huge step forward, helping build up her strength and meaning that she dies not need two people to roll her for certain personal care things. This would be better for her, and a step towards being able to not only go into the garden but also an adapter car. I understand that a normal estate car can be adapted....

Not being needed so often would help me. Without wishing to sound selfish, trying to find part time employment that fits around bring needed every few hours has been a nightmare. Also it would help improve Mum's mood.

Also without wishing to sound selfish I would like to have some sort of social activity. I was doing something which counted as both work and social activity but that came to a grinding halt as a result of people losing records and doing nothing about malicious rumours. I do get a bit fed up about the lack of friends and not having someone to talk to. The last few years have been stressful. People love to believe a rumour, and they love to kick a man when he is down.

I get a bit frustrated when my brother moans and groans about not being able to get out on the moors at the weekend, or only being able to get away for two days during a Bank Holiday weekend, or only going to the pub. It has always been like that, even when we were children.
 

Yokel

LE
Typical - just bleeding typical.

The Occupational Therapist and Physiotherapist visited today with a view to hoisting Mum out of her bed and into her chair - by which I mean the reclining chair or wheelchair. Mum though that the wheelchair would be a better option. We got her ready, got the kit into place, and experts turned up, by as soon as the hoist was turned on it demanded a service - therefore it could not be used. LOLER strikes again.

Typical! FFS!

However they did talk about future moves, such as possibly replacing a mobile hoist with a gantry or ceiling mounted one. This would possibly only need on person to use it and would allows Mum to move to a sitting posture and wheelchair/commode/etc easily. Mum would prefer to be help to stand with the ReTurn stand but she is currently too weak. Building her strength up would require her standing up, but standing up requires core, upper body, and leg strength.

I did ask the OT what sort of exercises would help strengthen Mum's right side - and was told that any sort of movement would help.
 

Yokel

LE
More fun today. Whilst eating her morning crumpets Mum managed to dislodged a Crown - a Jacket Cap on one of her front teeth - no idea what that means. The attempt to find a dentist who can visit was frustrating, to say the least.

Contacted her old dental practice - no longer a patient due to the time she had treatment. Dental helpline suggested. Tried dental helpline - waited over 45 minutes and decided to call 111 instead. Called 111, answered questions, referred to dental helpline. Talked to dental helpline and give numbers for local practices that should be able to help.

Practice#1 - no - they do not do that. Practice#2 - normally they would be able to help, but the dentist who did the home visits has retired and his replacement does not start until September. Practice#3 - they do indeed specialise in that, but we are in the wrong part of the county. Practice #4 - have you tried Practice#2? Practice#5 - might be able to help, and you might be in range - someone will phone you back today or tomorrow.

Meanwhile the local NHS has a limited domiciliary dental service - but only on referral.
 
yokel - have you applied for carers aloowance for teh full time care you are giving you mum and have you applied for attendace allowance fro her to assist with equiopment and service costs?

If not, please do so promptly. Attendance allowance is a 34 page form full of repeats designed to wheedle out what the applicant has habituated to as their normal and what is a reasonable everyone else's normal.

Support for carers is also to be had and necessary - it costs councils far less to support a carer with respite than it does to take over complex late lifestage care when the carer goes down. Even knowing yiu have a reliable sitter fro a couple of hours a week so you can go to the gym / pub / cinema / whatever to meet frineds once a week makes a huge difference to coping

Don't know where you are based, but Taking a break - Carers UK


Paramedics / A&E / ward staff / social workers drummed this into me
 
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Poppy

LE
yokel - have you applied for carers aloowance for teh full time care you are giving you mum and have you applied for attendace allowance fro her to assist with equiopment and service costs?

If not, please do so promptly. Attendance allowance is a 34 page form full of repeats designed to wheedle out what the applicant has habituated to as their normal and what is a reasonable everyone else's normal.

Support for carers is also to be had and necessary - it costs councils far less to support a carer with respite than it does to take over complex late lifestage care when the carer goes down. Even knowing yiu have a reliable sitter fro a couple of hours a week so you can go to the gym / pub / cinema / whatever to meet frineds once a week makes a huge difference to coping

Don't know where you are based, but Taking a break - Carers UK


Paramedics / A&E / ward staff / social workers drummed this into me

yes your council may have a carers support group - claim whatever financial help you can
 
if nothing else you can spend it in small assistances for mum. I am currently using fortisip apple calorie / vitamin drink, quite palatable, effective as I am still whacked post covid last year - buy from ebay
 
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