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I suspect my father may be struggling with dementia...

Rosettastone57

Registered User
Oct 27, 2016
1,164
An odd one. My dad went to the falls clinic the other day, it was slightly more helpful than I first expected. He seems to be having more problems with the left side of his body, they went through a cognitive few tests, he would struggle with lifting his left leg, raising his left hand to his nose... things like that, but would be far more able with his right side of his body. He hasn't had a stroke. They have also suggested that the physio home visits may not really be helpful for him, as dad struggles with following the directions for the exercises. They seemed to think that physicaly dads body was fine and that his issues stem more from his rapidly falling cognitive function (this is what I had suggested to the GP, who dismissed my suggestion at the time - the same one who didn't rally want to see my dad walking....).

They also said that from looking at his CT scans that his brain looked like what they would have expected from someone 20-25 years his senior. The memory clinic had told us that his brain looked fine though... maybe they were just looking for different things? The falls clinic also said there wasn't really anything they could do.

The physio team called to say they would be taking away his new 3 wheel mobility aid, as they felt it wasn't safe for him, so that sucks. But yeah, the physios also confirmed that they wont be coming back after next week.

So feel a little lost now, as I'm unsure what happens now....
My mother-in-law was like this. She had falls at home, but she was referred to the falls clinic who actually made a couple of home visits . But mother-in-law refused to engage with the physiotherapist and couldn't follow directions. Eventually, the visits were abandoned, due to her steep cognitive decline . I'm sorry to say, that eventually she needed someone with her constantly to prompt her to put one foot in front of another. This was one of the factors that led to full time care.
 

AztecCamera87

Registered User
Mar 12, 2019
130
My mother-in-law was like this. She had falls at home, but she was referred to the falls clinic who actually made a couple of home visits . But mother-in-law refused to engage with the physiotherapist and couldn't follow directions. Eventually, the visits were abandoned, due to her steep cognitive decline . I'm sorry to say, that eventually she needed someone with her constantly to prompt her to put one foot in front of another. This was one of the factors that led to full time care.
Two days ago, my dad was on his own for an hour between my sister going out and me coming home from work, in that hour he had managed to fall over backwards over a footstall and couldn't get up. No harm done at all, but if he had been about an inch taller he would have whacked his head on the old gas fire in the living room and could have ended up with a head injury.

Yesterday I was in tears at work for no reason whatsoever, lack of sleep, stressed, worrying about whats next and worrying about the mountain of things I need to arrange/sort out/etc. My line manager basically told me to go home (or rather, spend the afternoon doing something relaxing and then go home). In the London Borough we live in, there seems to be a real lack of support and help for carers and those with dementia. Most medical professionals seem happy enough to say everything is fine as soon as they know dad lives with son and daughter (I have explained before in my long rambles in this thread that the situation is rather more complex, as we both have partners and full time jobs etc). I have also found the memory clinic unhelpful once dad's diagnosis was confirmed and they have just referred me to speak with his GP.
 

AztecCamera87

Registered User
Mar 12, 2019
130
Dads walking is getting worse. It's now taking him about 10 minutes To get from the couch to the bed on the other side of the room. I never thought the decline would be so quick.... His diagnosis is for Alzheimer's. I always thought the decline was slower than this? In the space of just over a year he has gone from caring for mum to needing support with eating, walking and we'll... Everything... Sad really.
 

a8492

New member
Jul 24, 2019
3
Dads walking is getting worse. It's now taking him about 10 minutes To get from the couch to the bed on the other side of the room. I never thought the decline would be so quick.... His diagnosis is for Alzheimer's. I always thought the decline was slower than this? In the space of just over a year he has gone from caring for mum to needing support with eating, walking and we'll... Everything... Sad really.
Every case is different. My grandmother can still do most things by herself, and she was diagnosed with AD three years ago on 2 December. She just needs help with some of them (e.g. tying her shoelaces).

Unfortunately, your dad's AD has been quite rapid. You may find that this is just one of the stages they go through. One thing the carer's always say to me is that the patient is seemingly OK for a while, and then they get worse quickly, before stabilising, wash, rinse, repeat.

I hope you're doing OK and making time to look after yourself, which is absolutely essential.
 

AztecCamera87

Registered User
Mar 12, 2019
130
Tough day today. Really need some advice from the collective mind of the forum.

Firstly, i had phone calls from the carer this afternoon while visiting my partner, due to dad beimg verbally aggressive and more aggitated than normal. Not good.

Secondly. My dad is leaning and slouching to the right when sitting down and when up on his feet. Is this normal behaviour? Could it be related to the donepzil medication?

Thirdly. My dad has been complaining about his pad digging into him, his skin around there is looking good, no obvious redness or signs of a rash. this is very new and he's been trying to take his penis out of his trousers. He starts complaining when hes about to pee mostly. Saying its hurting. Could it be the pee itself is hurting? Its impossible getting any answers from him with exactly whats causing the issue.

So yeah, anyone else had experience of this and suggestions?
 

nae sporran

Volunteer Host
Oct 29, 2014
6,534
Bristol
On point 3, have you had your dad tested for a UTI at the surgery, AztecCamera87? That may relate to point 1 as well. Sorry if that is not helpful.
 

Flavelle

Registered User
Jun 20, 2017
37
My D leans dramatically to the left as he walks when he’s a bit under the weather...generally it’s either because he has developed a urine infection or is on the way towards one. It’s amazing how a mild ailment exacerbates symptoms of dementia, a full blown UTI causes delusions and sometimes hallucinations (in both my parent’s cases. Dad’s head n back were leaning so far left he would’ve keeled onto the ground without being held up, this was on Monday.It led to him slowly capsizing sideways onto a sofa, squashing his glasses into a wonky shape. He seemed happy sideways, I mean he clearly though that’s how he was meant to be as he struggled against efforts to straighten him. M got in a panic though, I was happy he was inside TBH in whatever shape. we. made a pint of lemon water with tons of sugar so he wouldn’t object too much and whooshed this into him the other day to alleviate symptoms it’s such a pain to go back & forth to the docs and have repeated antibiotics purely because not enough liquids are drunk. So far there’s been a bit of improvement and I haven’t had to get a urine sample to take in..yet. More sugary soupy lemon water I think Hope that helps
 

AztecCamera87

Registered User
Mar 12, 2019
130
Hi everyone. Thanks for the responses. Confirmed there isn't any UTI. So perhaps the increased aggitation is due to the Donepezil and just general changes in the weather? It does worry me when dad gets verbally aggressive to carers. My sister has noted a pattern of sorts, it tends to happen when younger new carers are attending to him.

Yesterday I was cleaning dad up after a mess. He started getting emotional as he thought mum had left him due to his incontinence. It was difficult, normaly when he asked about mum, i would say she wasnt home or was at the shops. This time I was left unable to give a real answer and just told him, that would never be the case. He was fine 10 minutes later. I wish i could see in his head.
 

AztecCamera87

Registered User
Mar 12, 2019
130
My D leans dramatically to the left as he walks when he’s a bit under the weather...generally it’s either because he has developed a urine infection or is on the way towards one. It’s amazing how a mild ailment exacerbates symptoms of dementia, a full blown UTI causes delusions and sometimes hallucinations (in both my parent’s cases. Dad’s head n back were leaning so far left he would’ve keeled onto the ground without being held up, this was on Monday.It led to him slowly capsizing sideways onto a sofa, squashing his glasses into a wonky shape. He seemed happy sideways, I mean he clearly though that’s how he was meant to be as he struggled against efforts to straighten him. M got in a panic though, I was happy he was inside TBH in whatever shape. we. made a pint of lemon water with tons of sugar so he wouldn’t object too much and whooshed this into him the other day to alleviate symptoms it’s such a pain to go back & forth to the docs and have repeated antibiotics purely because not enough liquids are drunk. So far there’s been a bit of improvement and I haven’t had to get a urine sample to take in..yet. More sugary soupy lemon water I think Hope that helps
I wish i could give sugary lemon water. Dads diabetic, so no extra sugar outside of the allready regimented diet. I ensure he drinks a lot of water, especially when blood sugars are high. He lets out a lot of urine at night. So before i go to work i give him a large cup of water.
 

AztecCamera87

Registered User
Mar 12, 2019
130
Me again, its been a tough week. Dad has had 5 falls in 7 days. No injuries at least, i've left two phone messages with social services this week with regards to safeguarding problems.

Yesterday, the neighbour called an ambulance as they saw dad on the floor through the window. I got home from work, got him up checked blood sugars and was surprised when paramedics came knocking. The neighbour explained to me he called them over an hour previously. Anywho, they wanted to take him to hospital due to the ECG, but his ECG is always irregular due to a heart attack several years back. Managed to persuade them not to take them in and they gave me a copy of the ECG incase something like this happens again.

Today i was spending the afternoon with my girlfriend, last weekend was her birthday and i had to leave early due to a call from the carer (another fall). And again i get a call from the carer, dads fallen and they couldnt get him up at the time (sadly, hes started dead weighting, which has given me an iffy lower back from time to time). They've put a request in for occupational therapy to see him, i explained the problems ive been having with the council.

Ahh well, just another day.
 

AztecCamera87

Registered User
Mar 12, 2019
130
Carers seem to do nothing but complain to me and my sister about everything. It gets grating, we both work during the day and cannot be around all the time, they are telling us they need 2 carers to be coming in, but not offered any advice about how we go about this. Been chasing social services again, still not heard a thing. Occupational therapy called and will be looking into improving the bathroom so dad can have a proper wash. My lower back is in pain the last few nights, im pretty sure it's due to the deadweighting issue and me getting dad washed, changed and into bed every night.
 

Rosettastone57

Registered User
Oct 27, 2016
1,164
Carers seem to do nothing but complain to me and my sister about everything. It gets grating, we both work during the day and cannot be around all the time, they are telling us they need 2 carers to be coming in, but not offered any advice about how we go about this. Been chasing social services again, still not heard a thing. Occupational therapy called and will be looking into improving the bathroom so dad can have a proper wash. My lower back is in pain the last few nights, im pretty sure it's due to the deadweighting issue and me getting dad washed, changed and into bed every night.
This situation is untenable. If social services are funding, then I'm afraid it's about making a nuisance of yourself. Your dad needs a whole team looking after him. You can only do so much
 

AztecCamera87

Registered User
Mar 12, 2019
130
This situation is untenable. If social services are funding, then I'm afraid it's about making a nuisance of yourself. Your dad needs a whole team looking after him. You can only do so much
Social services are partially funding. Dad falls in that rather annoying area of not being poor or well off, which alao means im paying for far more than i should be... dad accidently put the wrong pincode a few times on his debit card a while back and the bank wont sort it out until they have confirmation of the lpa. Long story... but means im having to pay off 2 debts of his... money my siblings wont be contributing in future. Dad has been okay last couple days, but he's not well, a cold, so is a little subdue right now. But im still waiting on social services to contact me despite now a third message left with them... my mental health is struggling, but im always rushing around and not sleeping well enough.
 

Cat27

Volunteer Moderator
Feb 27, 2015
10,824
Merseyside
@AztecCamera87
Maybe you should let them take him to hospital next time he falls as that may trigger an increased care package. You can’t carry on like this.
I wish you a peaceful Christmas.
 

AztecCamera87

Registered User
Mar 12, 2019
130
Oh i'm tired, ive been off work for the last week and a half, im just more knackered than ever. Between looking after dad and looking after my partner, and christmas im just knackered... who knew work was so relaxing.

Had to call 111 this evening, dad was struggling with breathing and had chest pains. I couldnt move him off his chair without him being in pain. Anywho, they sent paramedics, who had to take him to a&e for an xray, although they didnt really want to.

I had to leave dad at a&e as 11 approached, so i could get the bus home and so i can actualy go get some sleep, i felt a bit sad to leave him as he was confused by it all but dad doesnt have a coat or shoes, so will need to take them in the morning, as he will probably be sent home.... probably still in pain.
 

AztecCamera87

Registered User
Mar 12, 2019
130
They're keeping dad in one of the wards. Hes telling the staff hes in no pain whatsoever and then screaming out in pain as they try to move him so he can be changed. I told dad its important to be honest, they can perscribe some painkillers.

The hospital have his meds and his 2 insulins. I was surprised they hadnt given him his injections, the nurse said oh he hasnt been perscribed that, i said he needs injections 3 times a day, well apparently he cant have them
... it's just really odd.... and if theyre not careful he will end up staying much longer than he needs.

His ward is noisy and really not a good place for a man with dementia.