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

[AztecCamera87]

I really feel for you @AztecCamera87

My dad’s incontinence - and denial of it - drove me to distraction! He had pads, and then pull-ups but getting him to wear them was a nightmare. Well why would he when he wasn’t incontinent . He preferred to go commando!! The smell in the house was horrendous no matter what I tried to clean up the mess with.

This was one of the reasons why my dad needed to go into a carehome.

I am lucky enough my dad is more than happy nowadays to wear the pads and seems to be cool with the pull ups instead of conventional underwear.

We are always using the washing machine, but annoyingly I hardly get a chance to wash my own clothes (get time once a week right now to do a load). It's difficult keeping up with my own personal needs, as I just don't see it as a priority. I shower at my girlfriends flat twice or three times a week and just flannel wash at home.

Dad is sleeping more and more. I reckon he is now sleeping 10 to 13 hours a day. Is the increase in sleep normal for people who may have dementia? Or just old age? About a year ago dad slept 6-8 hours a day.

 

[AztecCamera87]

I feel ashamed that I’ve had a moan on the forums, especially since I don’t live with Mum; honestly I think you are amazing doing what you do
But
Enough
Cleaning up the poo was the final breaking point for me. Mum denying it happened if my OH hadn’t witnessed it I’d be branded a fantasist.

Call social services & be brutally honest.
Your Dads at risk, ask for respite care.
Write a list of issues/ events & send to all health care practitioners etc concerned, I email as then they can see who has been copied in.
I keep sending these emails especially as some health care practitioners don’t reply.

It’s wearing going around & around in the loop.

Incredible that they keep expecting you to take time off. Think you are going to have to make the work/ relationship/ home time frame very clear to nursing staff etc. Follow up all phone calls with an email clarifying what was being asked of you & your sister.
No one has the right to assume you will look after your Dad, & certainly not make you feel guilty when you can’t.

If your Dad needs help & care then the health professionals have the answer already.

Write to all concerned with your Dads care & state the detrimental effect this situation is having on you. Also go & see your own GP & get all this documented.

It might not change anything immediately but it helps build a case.

Good luck & keep posting

You have a life, & shouldn’t be made to feel guilty for living it.

P.s
It’s very easy giving out advice but I’m struggling to take my own advice at the moment. I am determined to not fold this time. The first time you say no when asked to do something is awful. But once you’ve said no - it becomes easier.
Ref your Dads prescription - ask for it to be delivered all pharmacies do a delivery service.

At his worst, dad lashes out verbally calling me and my sister liars, I have had to be much more confident with medical professionals, even if dad doesn't like it. As skirting around issues hasn't helped. I have been chasing various things with dads health, incontinence clinic appointments, physio appointments (they're supposed to be seeing him at home), we get his prescriptions sent to the house by the pharmacy now at least. My work has been helpful, but I think they have started to become a tad more annoyed. But there isn't much they can do about it.

 

[canary]

It sounds like you have got a lot on your plate @AztecCamera87

Yes, it is usual for people with dementia to sleep much more, because their brain is finding it harder to process everything and it takes a lot of effort, so they get very tired. My OH (in his 60s) sleeps about 14 hours a day now.
I so identify with the way you are so desperately sorting out everything for your dad that your own needs come bottom
Would he accept a befriender to give you some space?

 

[AztecCamera87]

It sounds like you have got a lot on your plate @AztecCamera87

Yes, it is usual for people with dementia to sleep much more, because their brain is finding it harder to process everything and it takes a lot of effort, so they get very tired. My OH (in his 60s) sleeps about 14 hours a day now.
I so identify with the way you are so desperately sorting out everything for your dad that your own needs come bottom
Would he accept a befriender to give you some space?

My dad would probably not want a befriender, he doesn't really like 'people, and even having the carers coming in is about all he can just about take.

My dads blood sugars were very low when the district nurses came this evening. They left a note in his book saying that his son wasn't around. I feel very annoyed as I went to see my sick girlfriend for about 5 hours and he has the carers. It's almost like they expect me at home 24/7

 

[DesperateofDevon]

My dad would probably not want a befriender, he doesn't really like 'people, and even having the carers coming in is about all he can just about take.

My dads blood sugars were very low when the district nurses came this evening. They left a note in his book saying that his son wasn't around. I feel very annoyed as I went to see my sick girlfriend for about 5 hours and he has the carers. It's almost like they expect me at home 24/7

That’s a really unfair comment for them to write; but I think you need to not be around so much.
Hope your girlfriend feels better soon
X

 

[AztecCamera87]

This morning my dad had a very out of character turn, shouting and swearing at his carers. I apologised to them, but he refused they went near him, so I had to wash and get him changed (again, I was rushing on my way to work before this happened, so late again!). Hopefully this is not a new trend or development of (possible) dementia, as I made it clear to dad I would not be washing and dressing him every day...

 

[TNJJ]

That’s a really unfair comment for them to write; but I think you need to not be around so much.
Hope your girlfriend feels better soon
X

It is funny how the carers seem to think “YOU” have the duty of care”!When it is actually them.My dad employs carers but I also do a lot for dad.Arrange transport ,food,etc.If I didn’t do it they wouldn’t.But I only go in to see him and help him 4days a week.They have him fri,sat,sun completely.I don’t live with him as I couldn’t.He is not the easiest of men and can be really awkward shall we say..I understand completely where you are coming from!

 

[AztecCamera87]

Walking is becoming harder...
It has become more and more obvious over the past few weeks that dad is strugling more and more with walking around the house, he has gone from needing the walking stick for when he goes out, to needing the stick around the house to needing to use his frame in the house in the past few months. As I've probably said here, dad forgets to use his stick or frame, at worst he forgets he needs it, he also forgets where he puts it. Seeing him grabbing on to everything to get to the bathroom is pretty sad. He has been find it more and more difficult getting out of his chair and sitting down. He's had problems with his leg since he broke his hip after his bike hit a car several years back.

The doctor seems to suggest that he just needs physiotherapy, but to be honest, I'm not sure this is the case and I'm not sure that physio will give him much improvement. It's not like he just sits down all day, even if he isn't getting out the house much after his last fall. To me it seems more like it's a huge problem with co-ordination which is falling away. it's the same with his hands, after I check his blood sugars on his fingers, he will just hold his arm out until he's told to put it down, he gets confused as to how he's supposed to hold his arm up (if that makes sense?) It's almost like he's having to put so much extra thought into walking and doing things with his arms.

Could his be related to possible dementia? Or is it just a case that the physios need to be involved? Wouldn't mind hearing past experiences with similar things from people here.

 

[Cat27]

https://www.rnib.org.uk/sites/default/files/Dementia_and_sight_loss_leaflet.pdf

My Dad had vascular dementia & it affected how he perceived things & therefore he had lots of falls & stumbles.

 

[canary]

Loss of mobility is usual in the more advanced stages of dementia. My mum eventually had to use a frame to walk and I had to use a wheelchair when I took her out. Like you have noticed, mum simply couldnt remember the process of walking anymore and after a few steps she was exhausted by the effort.

If he hasnt had a fracture or something like a hip replacement, then, TBH, I dont think that physio will make much difference

 

[AztecCamera87]

Loss of mobility is usual in the more advanced stages of dementia. My mum eventually had to use a frame to walk and I had to use a wheelchair when I took her out. Like you have noticed, mum simply couldnt remember the process of walking anymore and after a few steps she was exhausted by the effort.

If he hasnt had a fracture or something like a hip replacement, then, TBH, I dont think that physio will make much difference

My dad had to have a hip replacement several years ago, due to the bike accident and had walked with a stick ever since then (only when going out of the house). He did also fracture his pelvis a few months back, but the hospital doctor said it wouldn't be of any issue as it was very minor. While that could be the issue, I am really not convinced. I am also now having to take dad to all appointments in a wheelchair.

 

[AztecCamera87]

Loss of mobility is usual in the more advanced stages of dementia. My mum eventually had to use a frame to walk and I had to use a wheelchair when I took her out. Like you have noticed, mum simply couldnt remember the process of walking anymore and after a few steps she was exhausted by the effort.

If he hasnt had a fracture or something like a hip replacement, then, TBH, I dont think that physio will make much difference

Oh, just to also add, I'm getting more convinced he (probably) is now more than likely in moderate to later stages.... the changes are becoming more and more rapid. (I recall seeing someone post a link to the stages of dementia on this forum, and thinking... oh wow, dad's decline has been rapid). Although, it does seem me and my sister are the only ones really seeing it...

 

[AztecCamera87]

Today I get home from work to poo on the living room floor. Dad insists he has no idea how it got there. He's wearing different trousers from the morning, but the carer may have changed him earlier in the day. I'm finding this very difficult. Dad said it must have been someone else. He then tells me I'm making things up, despite me being on my hands and knees cleaning up the carpet. My chest felt tight, apparently I want the house. I don't... I really don't... I would rather be out of here and far away. I spouted off, "if I didn't want you here, why would I be washing your clothes, doing your blood sugars, and cleaning this carpet". He knows, and I know, he said it out of anger, "I don't know, I don't know, be quiet", dad holds his head. I hold back a tear. Ten minutes later dad is playing with rizla papers, "turn the dryer off", stupidly I put the washing on the line first thing this morning... "I can't dad, I'm drying your bed covers"... "Well, nobody asked you to do it". I bite my tongue...

 

[AztecCamera87]

Today I get home from work to poo on the living room floor. Dad insists he has no idea how it got there. He's wearing different trousers from the morning, but the carer may have changed him earlier in the day. I'm finding this very difficult. Dad said it must have been someone else. He then tells me I'm making things up, despite me being on my hands and knees cleaning up the carpet. My chest felt tight, apparently I want the house. I don't... I really don't... I would rather be out of here and far away. I spouted off, "if I didn't want you here, why would I be washing your clothes, doing your blood sugars, and cleaning this carpet". He knows, and I know, he said it out of anger, "I don't know, I don't know, be quiet", dad holds his head. I hold back a tear. Ten minutes later dad is playing with rizla papers, "turn the dryer off", stupidly I put the washing on the line first thing this morning... "I can't dad, I'm drying your bed covers"... "Well, nobody asked you to do it". I bite my tongue...

Just a quick follow up to last nights shenanigans. As I was leaving for work this morning, a district nurse arrived and we chatted. They told me what happened, apparently the nurse arrived yesterday lunch time to give dad his insulin injection. Dad had messed himself and decided to take the poo out of his pad and leave it in his cereal bowl from the morning and it had also got on the floor. They were requested to take a urine sample and check for any infections this morning. They did a stick test and it was all fine, but the sample will be tested properly as well. I told her I doubt it will come back with any infections.

 

[DesperateofDevon]

Ah “pooh gate” this has happened a few times now. Once at my home, my poor carpet will never be the same again- no matter how many times I hire the carpet cleaner! Last time at Mums when paramedics were called out, the neighbours thought it was the cat! Paramedics not fooled by it fortunately.
The incontinence & confusion seems to be a bigger issue as Mum progresses.
Still no appointments or confirmed diagnosis!
Mums GP useless!!
But social worker more switched on.
Without support from GP we are in limbo!
Shouldn’t be a battle to get a diagnosis.
You need to keep pressure on GP & SS & DN to get care package in 4 times a day
Good luck & keep posting

 

[Rosettastone57]

Walking is becoming harder...
It has become more and more obvious over the past few weeks that dad is strugling more and more with walking around the house, he has gone from needing the walking stick for when he goes out, to needing the stick around the house to needing to use his frame in the house in the past few months. As I've probably said here, dad forgets to use his stick or frame, at worst he forgets he needs it, he also forgets where he puts it. Seeing him grabbing on to everything to get to the bathroom is pretty sad. He has been find it more and more difficult getting out of his chair and sitting down. He's had problems with his leg since he broke his hip after his bike hit a car several years back.

The doctor seems to suggest that he just needs physiotherapy, but to be honest, I'm not sure this is the case and I'm not sure that physio will give him much improvement. It's not like he just sits down all day, even if he isn't getting out the house much after his last fall. To me it seems more like it's a huge problem with co-ordination which is falling away. it's the same with his hands, after I check his blood sugars on his fingers, he will just hold his arm out until he's told to put it down, he gets confused as to how he's supposed to hold his arm up (if that makes sense?) It's almost like he's having to put so much extra thought into walking and doing things with his arms.

Could his be related to possible dementia? Or is it just a case that the physios need to be involved? Wouldn't mind hearing past experiences with similar things from people here.

My mother-in-law was very much like this. She refused to use a frame, refused to use a walking stick she would move around very slowly by grabbing onto furniture or trying to cling onto the walls. Alternatively she would walk around holding her walking stick but then dragging it behind her so it never actually served it's proper function. Eventually it got to the point where she could no longer remember that she had anything to help her in the first place . . that I'm afraid was one of the criteria where she ended up in a care home she was a high falls risk. She would never have entertained any sort of physiotherapy . It would have been a complete waste of time she simply would not have complied with instructions or even remembered to do any exercises.

You mentioned the notes that the carers or district nurses had put in about" the son not being there". I often used to find that the carers for my mother-in-law had put in all sorts of notes about family not doing enough, family this that and the other, family being rude etcetera. All this of course was fuelled up from my mother-in-law who as far as she was concerned there was nothing wrong with her, although the reality was she could do little for herself. My mother-in-law was very good at promoting herself as a victim, that no one did anything for her no one cared about her ,her family never visited. She had had a personality disorder for most of her adult life and it was all part and parcel of it. I just ignored it . Once the double incontinence set in last summer I'm afraid family made a decision that she needed to go into a care home . She actually went in hospital first with dehydration during the heatwave last year and from there went straight into 24/7 care .

 

[DesperateofDevon]

Mum high high risk for falls, but deemed capable by herGP so we can only cajole Mum into having carers as an alternative to CH.
If I’m honest this could be made easier by Mum & her GP.
Made to feel as if whatever i do isn’t enough; so now have backed right off so the situation is made clearer

 

[Rosettastone57]

Mum high high risk for falls, but deemed capable by herGP so we can only cajole Mum into having carers as an alternative to CH.
If I’m honest this could be made easier by Mum & her GP.
Made to feel as if whatever i do isn’t enough; so now have backed right off so the situation is made clearer

My mother-in-law had always refused point blank to go into care. We identified that she should have been in care earlier than she actually went, but my husband refused to dupe her in any way. We waited for a crisis which came last summer when she became ill. She was rehydrated and sent home ,but then she couldn't remember where her bathroom was in her own home, she had several falls,resulting in another admission. She was self funding and no social services involvement. We made the decision then she was no longer safe.


We found a home who assessed her in hospital and we told her she was staying there to get better and recuperate. The care home assessors did a good job, as mother-in-law told the doctors she wanted to go there to do cooking. The reality was she hadn't done cooking for years. Her capacity was questionable as she didn't know where she was and didn't know why she was in hospital. She was discharged straight to the home, by hospital transport. She never went back home.

 

[DesperateofDevon]

It’s a shame isn’t it?
No dignity.....

 

[AztecCamera87]

My mother-in-law had always refused point blank to go into care. We identified that she should have been in care earlier than she actually went, but my husband refused to dupe her in any way. We waited for a crisis which came last summer when she became ill. She was rehydrated and sent home ,but then she couldn't remember where her bathroom was in her own home, she had several falls,resulting in another admission. She was self funding and no social services involvement. We made the decision then she was no longer safe.


We found a home who assessed her in hospital and we told her she was staying there to get better and recuperate. The care home assessors did a good job, as mother-in-law told the doctors she wanted to go there to do cooking. The reality was she hadn't done cooking for years. Her capacity was questionable as she didn't know where she was and didn't know why she was in hospital. She was discharged straight to the home, by hospital transport. She never went back home.

At my dad's last proper hospital visit, I had a meeting with several staff members, one put me on the spot and asked do you think your dad should move to a care home (wording may not be correct). My answer was, "I can't possibly answer on the spot, without consultation with dad and my siblings". Didn't like the question, despite being aware that he probably will need to at some point. Despite all the problems we are having, I want my dad to stay out of care for as long as he possible, sadly as each day passes, it gets harder to justify him staying at home.