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Carers UK Forum • New to the group not to the game
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New to the group not to the game

Posted: Thu Jun 23, 2022 7:05 pm
by Jason_220612
Hi all, this is going to be a long one.

We’ve been doing the caring thing for nearly 5 years. It sounds crazy to say it because I never really thought how long we’d be doing this for.

My MIL had a bout of viral pneumonia beck in 2015. She was left with severe mobility issues and reduced short term memory. She had other ailments as well. She was 79 at the time. Her husband was just a year younger. He was a very old fashioned and a temperamental person and at the time, we were in Hertfordshire and they had a flat in Dorset. My wife would keep in touch on a weekly phone call and visit every 2 weeks. It was very draining for her after working a busy week and commuting via M25. Whenever she’d get there he’d be saying she was a nightmare and a man shouldn’t have to do these duties :shock: He was then saying he’d have to put her in a home and he’ll move off somewhere and live in a 1 bedroom flat. My wife would come home Sunday evening even more exhausted and upset.

Just before Christmas in 2016 I proposed the idea of both households selling their properties so we could try and find a suitable larger house where we could all live in. I couldn’t see any other option. My wife was in education and had worked her way up to a good job in the 20 something years she worked there. I didn’t want to sell our house and just settle for a smaller property just so she could do a different job and then go round to them every day. My job wasn’t office based so I could go anywhere. Thankfully they agreed to my idea but said they didn’t know what to do when it came to selling up. This is a couple that in the time I’ve known them at that point was 14 years had moved 7 times. This was a red flag moment for me with how he was going to be with me. “The help”.

We finalised the sales in Jan 2018 and moved them out of a rental flat they stayed in local to us in Feb 2018 allowing me time to make the house ready for them with alterations to assist with getting up and down the stairs. We made everything nice and neutral in their bedrooms and gave them the main living room. We took the master bedroom but we lived in the snug (next to the downstairs cloakroom :lol: )

Shortly after moving her dad was diagnosed with Parkinson’s and Lewy body dementia was very likely to come into the equation. He started treating me very differently to how he was with me when we’d visit. I’m one of those people that can’t feel comfortable unless I know I’ve done everything to ensure their comfort. The way he would treat me was so frustrating. He would be Mr confident, I’ll take care of it if we need anything. 2 minutes later can you show me how the heating works. Or could you change the channel on the tv. Over lockdown we saw a drastic change in her dad. I was already working part time since Aug 2017 and looking after them for appointments and lunch every Thursday and Friday. September 2018 after seeing such a change in her dad I left work and became their full time carer. He was taking his wife’s tablets even though they were all labelled and started struggling getting breakfast for both of them. Dressing was also an issue as was incontinence.

His condition worsened in the next few months, the dementia was taking over. He was having falls as he’d get up in the night and wander around. He was getting confused about where he was. Stopped recognising his wife on occasions, suggesting that was his wife’s mother. He would call his daughter by his wife’s name. I was doing everything wrong according to him, I was rude to him, I was banging the dishes when washing up just to annoy him. He wanted to move to a flat back where they used to live some 30 odd years ago and he’d be taking his wife. Who was quick to tell everyone she wasn’t going anywhere 8-) Things would settle down after my wife having a chat with him and forgotten by him a few hours later. I noticed I was starting to experience anxiety related symptoms in Dec 20. Stomach would go into lockdown, shivers, sweats, uti. One night I heard him fall heavy and as I was trying to get out of the bed I was explaining to my wife what I heard through hyperventilated breath. As soon as I got to his room, he was fast asleep and it was all in my head.

April 21 He had an aneurysm which we had no idea how. It came out of nowhere. My wife said she’d look after them while she worked at home and I could go off and do some photography. When I got home she said he was acting weird after going to the toilet. He wasn’t making any sense when he spoke. I went into him and he was speaking fine. We put it down to another possible dementia thing. That night he was restless and had us up by 5am where his speech had turned to gibberish. I called an ambulance and they took him away for tests. He was gone nearly a week when the hospital wanted to check him out even though he hadn’t improved but there was nothing they could do for him. I asked for a medical package as I was nowhere near qualified to look after him for fear of making things worse. We were called the next morning to say he was being transferred to another hospital as he had suffered a fall and he fractured his hip. The new hospital were unable to carry out surgery because he was sleeping too much and this was a worry for the anaesthesiologist. He passed away a week after arriving there.

Since he passed we’ve noticed a big decline in my MIL. She doesn’t speak very much, she’s lost all interest in reading. It feels like she’s just living for the sake of living. It’s a very unfortunate thing to see in an elderly person. They have many friends and they seem so switched on and still enjoying life. It’s made us think about how we’re going to try and live when it’s just the two of us again. I’m not yet 50, another 2 years to go and wife is about to turn 52. We bought a caravan last year in the hope it gave us something to plan for. We’ve been out in it 3 times so far for a total of 2 weeks and 1 night :D :D . The cost of respite care puts s limit on how many breaks we can have. We take what we can get.

I’m still going through anxiety which I thought might improve after the passing of the FIL but no such luck. There’s clearly a subconscious thing going on with being a carer and having the responsibility of someone’s life in your hands.

Our life is very limited because we are on standby 24/7 listening out for toilet breaks which there are plenty, taking care of incontinence issues which there are plenty, we have to control her tv because she doesn’t know what she wants to watch, we barely get to sit with each other as a couple without a timer going off to change the channel for the next show.

We get guilted often. More so my wife than me. “When are you coming to sit with me?” just as she gets home from work. (Now a 100 mile round trip) new questions coming up regularly, “have I had my warfarin?” “Have I had my dinner?” With an empty plate just in front of her. When will Philippa be home? Is she working today? These are daily questions.

We used to play the card game uno but we ended up selecting her cards for her. We used to sit with her for word searches and crosswords but she’d say she couldn’t see the words even with a magnifying glass and regularly checked eyes telling us there are no changes, so we ended up completing them for her.

The worst part is feeling like we want this to end now for everyone’s sake. I’m worried about my health, I’m worried about my wife’s health and I’m worried about my MIL’s wellbeing. It feels like it’s taking it’s toll.

We’re also seeing a very destructive side to her recently. She has a tendency to scratch until she bleeds (on warfarin so that’s added stress) she recently tore her legs up where the lower leg skin is extremely fragile. She picks on a scab and never lets it recover.

She’s never been formally diagnosed as having dementia but it had been suggested about 3/4 years ago by her GP that there was evidence of cognitive decline. She won’t let us have her checked and can be quite bullish. She doesn’t like going out now even though I push her in a chair or walk her short distances in the hairdressers.

Anyway that’s me Jason and my wife Philippa putting our lives on hold like many of you, hoping one day we’ll be healthy enough to go out on weekend adventures and maybe some overseas adventures too. It’s what’s keeping us going. One day. Day 1.

Re: New to the group not to the game

Posted: Thu Jun 23, 2022 9:17 pm
by bowlingbun
Here's a wake up call. My husband and I were caring for our son with severe learning difficulties, and all four elderly disabled parents. All five entitled to highest DLA care, but one too stubborn to claim! MIL died first from dementia, then my dad from prostate cancer. FIL next after major bowel cancer surgery and hear failure at 87...then my husband at 58, from a massive heart attack in his sleep.
All our dreams gone forever.
He'd worked hard all his life, was planning to go to Australia and New Zealand when he was 60, it never happened.
Don't let this happen to you. You do not "have to" do anything.
If mum needs respite, then she can either pay herself or Social Services will pay. However, long term she is mentally frail and pretending she isn't is typical.
Nothing will change unless you make it change.
You've done too much already.

Re: New to the group not to the game

Posted: Thu Jun 23, 2022 9:33 pm
by Melly1
Hi Jason,

welcome to the forum.

Goodness what a stressful few years you have all had.

I'm very tired tonight, so here are just a few thoughts:

Does your MIL have care workers coming to care for her too?

You could write to her GP expressing your concerns and ask that she is called for a' health check'.

When she has respite is it in a care home? She should be the one funding this.

Melly1

Re: New to the group not to the game

Posted: Fri Jun 24, 2022 10:57 pm
by Breezey
I have no experience of dementia, but others will respond who have.

You need to get diagnosis and then get attendance allowance for her.
Then you can claim carers allowance and NI payment credits.

I have sent you a private message.

You can programme the tv if its a smart tv, you can do timer on the tv for it to change channels automatically. But then you aren't doing regular checks on her and is it giving her independence or abandoning her, it's a fine line. I care for my elderly mother and it's a godsend to programme the tv for the day in the living room and then the evening in her room so I can get on with things.

A doorbell is good too, so if she needs me when I am dong jobs she can ring the bell. I have a plug in bell with two plug in units. Not sure if your MIL will take to that, or over use it or forget.

Re: New to the group not to the game

Posted: Fri Jun 24, 2022 11:30 pm
by Breezey
Do a search for dementia fidget, dementia fidget toys/widgets/books/quilts
Give one or two a try to see if it will occupy her hands to stop her from scratching.
If she used to knit or crochet, get her a ball of wool and needles or a crochet hook and see if that occupies her hands.

Are they testing your MILs eyesight or doing an eye examination as well? There could be eye conditions that are affecting her sight.

Re: New to the group not to the game

Posted: Sat Jun 25, 2022 1:12 pm
by Jason_220612
Hi there. Thanks for your reply. I’m sorry you’ve had such a difficult time too. We’re trying to do what we can when we can, time and energy permitting. When it comes to respite care, we use her money but we’re trying to be careful not to use up all her savings as we’ll need some money to make the house our own. The stairlift was the biggest thing but as she’s getting on and her dementia and incontinence gets worse, we’ll probably have to redecorate the rooms she inhabits.

This newest bug I have is giving me more reason to be selfish and do more us things and not stay home and be on standby for the next issue.

I hope you have a good balance to your life.

bowlingbun wrote:
Thu Jun 23, 2022 9:17 pm
Here's a wake up call. My husband and I were caring for our son with severe learning difficulties, and all four elderly disabled parents. All five entitled to highest DLA care, but one too stubborn to claim! MIL died first from dementia, then my dad from prostate cancer. FIL next after major bowel cancer surgery and hear failure at 87...then my husband at 58, from a massive heart attack in his sleep.
All our dreams gone forever.
He'd worked hard all his life, was planning to go to Australia and New Zealand when he was 60, it never happened.
Don't let this happen to you. You do not "have to" do anything.
If mum needs respite, then she can either pay herself or Social Services will pay. However, long term she is mentally frail and pretending she isn't is typical.
Nothing will change unless you make it change.
You've done too much already.

Re: New to the group not to the game

Posted: Sat Jun 25, 2022 1:17 pm
by Jason_220612
Hi Melly

Thanks for your reply.

She doesn’t have any other support apart from me and my wife when she gets home from work and the weekends. Occasionally when her leg ulcers get bad or she makes them bad beyond what I can manage, we have a district nurse. They usually treat to a good level then it’s handed back over to me to maintain.

It is a local care home she stays at for the stay and thankfully the payment comes from her account :D

Melly1 wrote:
Thu Jun 23, 2022 9:33 pm
Hi Jason,

welcome to the forum.

Goodness what a stressful few years you have all had.

I'm very tired tonight, so here are just a few thoughts:

Does your MIL have care workers coming to care for her too?

You could write to her GP expressing your concerns and ask that she is called for a' health check'.

When she has respite is it in a care home? She should be the one funding this.

Melly1

Re: New to the group not to the game

Posted: Sat Jun 25, 2022 1:39 pm
by Jason_220612
Hi Breezy

Thanks for your reply and advice. Thankfully we have most of the necessary financial support benefits where we qualify.

She’s on Sky as we have the multi room which can’t be programmed but I love what you’re doing with your mums tv programming.

She has a bell in all the places she goes to, lounge, WC and bedroom. Unsurprisingly, she’s never bothered using them.

Ever since her pneumonia, we’ve noticed she settled into having everything done for her really well. My wife used to try and get her to interact with a few things and up to last Christmas it had been watered down to filling in Christmas cards but with my wife suggesting what to say because her mum couldn’t think of what to say. With some recent correspondence, we’ve now seen a huge decline in her ability to write. Problems with text size and keeping it straight.

We persevere :D
Breezey wrote:
Fri Jun 24, 2022 10:57 pm
I have no experience of dementia, but others will respond who have.

You need to get diagnosis and then get attendance allowance for her.
Then you can claim carers allowance and NI payment credits.

I have sent you a private message.

You can programme the tv if its a smart tv, you can do timer on the tv for it to change channels automatically. But then you aren't doing regular checks on her and is it giving her independence or abandoning her, it's a fine line. I care for my elderly mother and it's a godsend to programme the tv for the day in the living room and then the evening in her room so I can get on with things.

A doorbell is good too, so if she needs me when I am dong jobs she can ring the bell. I have a plug in bell with two plug in units. Not sure if your MIL will take to that, or over use it or forget.

Re: New to the group not to the game

Posted: Sat Jun 25, 2022 1:47 pm
by Jason_220612
Hi Breezy, sorry, I should’ve replied to this post in my last reply.

Sadly once she puts an item down, she forgets she even had it and goes back to scratching. She’d almost have to never put the item down to stop her from doing the destructive scratching thing.

Her eyesight according to her last eye test and diabetic eye test, she was fine.

It’s a strange thing with testing, her husband was the same, passed perfectly and then when the pressure was off, they were back to having issues. I do wonder if they really focus when being tested and relax afterwards which is why they revert back.


Breezey wrote:
Fri Jun 24, 2022 11:30 pm
Do a search for dementia fidget, dementia fidget toys/widgets/books/quilts
Give one or two a try to see if it will occupy her hands to stop her from scratching.
If she used to knit or crochet, get her a ball of wool and needles or a crochet hook and see if that occupies her hands.

Are they testing your MILs eyesight or doing an eye examination as well? There could be eye conditions that are affecting her sight.

Re: New to the group not to the game

Posted: Sat Jun 25, 2022 11:19 pm
by Breezey
Jason_220612 wrote:
Sat Jun 25, 2022 1:47 pm
Hi Breezy, sorry, I should’ve replied to this post in my last reply.

Sadly once she puts an item down, she forgets she even had it and goes back to scratching. She’d almost have to never put the item down to stop her from doing the destructive scratching thing.

Her eyesight according to her last eye test and diabetic eye test, she was fine.

It’s a strange thing with testing, her husband was the same, passed perfectly and then when the pressure was off, they were back to having issues. I do wonder if they really focus when being tested and relax afterwards which is why they revert back.

[/quote]

There could be many reasons, age and giving up/can't be bothered, psychological, brain issues, anyone's guess.

The diabetic eye test will be thorough, checking the eye for anything else, my mother had those, then she was diagnosed with dry macular degeneration and goes to the eye clinic now.
They said some days eyesight will be better than others due to diabetes, it's just one of those things.
Some eye tests are better than others.