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I don’t want to get up 😢

Felixcat1

Registered User
Feb 23, 2021
164
0
I am really worried about my PWD but he refuses to attend any groups, or a day centre, have careers etc and he is so lonely. He says that he just has these four walls and sees nobody to talk to. He can’t remember how to use the tv and he is having trouble remembering how to use other appliances around the house. He has lost his concept of time and has said that he doesn’t want to get up and has started taking himself to bed. I do my best to phone him and speak to him every day and we are on the phone most evenings for at least half an hour and I go round as often as I can but I don’t live near him and I work full time as a teacher, so I am not able to just take a day off to see him during term time. He often doesn’t remember when I have phoned him now and is starting to forget that I have visited. He also couldn’t remember my name a couple of days ago. I did manage to raise his spirits tonight but I feel so sad for him but my hands are tied.
He also scared himself today. He went out to the local shops and nearly fell several times on the ice. He had to ask a complete stranger if they would help him back to where he lives. The stranger kindly walked him all the way home but this in itself is a major concern.
I can’t even send my daughter round, who would love to see him but he has accused her of stealing from him, even though she would never dream of doing such a thing. I was going to let her go round as it would really help me and it upsets her to see me so stressed, but I am worried that it would distress him and he might try to phone the police (even though he has no idea what the number is) or worse become aggressive. She suggested we go round together but he then just thinks that we are working together to steal his things. Any suggestions would be gratefully appreciated.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
76,074
0
Kent
Hello @Felixcat1

What happens at mealtimes? Who does the food shop? Does your person with dementia have carers to help?

A lot of questions I`m sorry but if they are spending so much time alone, I think @MartinWL `s suggestion might be valid.
 

Violet Jane

Registered User
Aug 23, 2021
854
0
As well as being lonely I wonder how well your father is coping with looking after himself. Does he wash himself and his clothes? Can he get to the toilet and clean himself afterwards? Can he buy food and deal with money? Can he prepare a hot meal for himself? As a rule of thumb, someone who lives alone and doesn't have family who can pop in every day will need carers at quite an early stage and earlier than someone who has a resident carer or family nearby. I think that you are going to have to bring carers in despite your father's opposition and see whether that improves the situation. If your father won't accept them then I think that the only option is a home.

Another thing is that it doesn't sound as if your father is getting any benefit from being at home and so is there any point in keeping him at home when he is not coping and is unhappy?
 

canary

Registered User
Feb 25, 2014
18,483
0
South coast
He went out to the local shops and nearly fell several times on the ice. He had to ask a complete stranger if they would help him back to where he lives.
This is a huge red flag. Once they start going out and getting lost and/or getting strangers to bring them home it is a gamechanger.

I really do think that he is going to need a care home and that soon there will very likely be a crisis. I really would start looking at care homes now.
 

Sarasa

Volunteer Host
Apr 13, 2018
4,854
0
Nottinghamshire
Hi @Felixcat1, my mum was at a similar stage to your dad when I moved her to a care home. She could still hold a conversation, and could be extremely assertive about what she wanted and didn't want, including no help coming in. However she was getting more and more confused, and putting herself at risk with her behaviour. I hoped a move to a care home would mean she could not worry about things that confused her, and enjoy the company and the excellent activities they had. It didn't really work out like that as she was far from happy for a long time, but I don't think staying at home would have been an option either. Therefore I'm very glad I did it before a real crisis struck.
This site https://www.carehome.co.uk/ is a useful place to start. Having recently been looking at homes for both my mum (we moved and I wanted her nearer me) and my mother in law brought home how different homes can be. Ones that would have been great for one wouldn't do for the other. Find one that is the best match and try and persuade your dad to go in for some 'respite.' Maybe call it a holiday or a chance to recuperate. You may be on a waiting list for the most suitable one, so worth doing now before it is absolutely needed.
 

Rosettastone57

Registered User
Oct 27, 2016
1,727
0
Your PWD is never going to be happy wherever he lives. It's the nature of the illness. I agree with other posters, it's time for 24/7 supervision, or at least carer visits to help . Once the disorientation starts outside the home, it's very difficult to manage
 

Felixcat1

Registered User
Feb 23, 2021
164
0
Thank you all for your replies. You have all said exactly what I’m thinking in my heart of hearts as well as in my head.
Just wanted to say that dad didn’t get lost when he asked someone to help him get home. He was scared of slipping and falling on the frozen ground.
The fact that he put himself in danger by going out in freezing conditions is scary.
He is still able to prepare meals, wash and dress too but he is having hallucinations and delusions has no insight or reasoning.
To top it off the doctors have refused to do a home visit despite me saying he is very unsteady on his feet and surely they know he has dementia. They have just said that he is not housebound 😡
 

Sarasa

Volunteer Host
Apr 13, 2018
4,854
0
Nottinghamshire
I think your dad is at the stage where things are just about all right until suddenly there're not. This is what happened with mum. In the first few months of 2019 she seemed to lose the ability to understand time, found it difficult to feed herself and was having meltdowns over things she thought had gone wrong at the drop of a hat. She still knew where she lived and could manage personal care but she was so vulnerable and very open to being taken advantage of as she saw herself as a flirtatious twenty something not a ninety year old. When I was sorting stuff out after she went into care I realised that a lot of the shop keepers in her small suburb had been keeping an eye out for her and sorting out the muddles she was getting into.
When I went to look at the care home mum moved to in March that year I thought we were quite a way off her needing to move there. She moved in in the early May.
 

Moggymad

Registered User
May 12, 2017
980
0
We have recently (this week) started a carer visit on pretext it was an initiative organised by GP to prevent hospital admission due to increasing covid cases. The agency were on board with this & in fact sounded very plausible when she explained why she was there to assess. Very early days yet so fingers still crossed.
Our PWD is some years into the illness & until today has been staying in bed. No wash or food unless someone there to get for him. His family having to fit in meal & keeping company visits around their jobs. He doesn't do anything any more & I'm sure he feels lonely. The care visit is in addition to their visits. Hoping they can persuade better personal hygiene. He also had hallucinations which he had some medication for which helped but still gets them now & again. I'm wondering if its due to loneliness as well as dementia. He is against all outside help & will not go to day care etc. Hence our GP story re carer. It was made all the more plausible by having a GP appointment a couple days before so care agency referred to that to link in.
Wishing you the best of luck with your dad. I don't know if any of above might help. We just try very hard to stop them giving up, it's so sad.
 

Violet Jane

Registered User
Aug 23, 2021
854
0
Quite honestly, I think that your Dad needs some medical and OT / physio input.

Can anything be prescribed for the hallucinations and delusions, which must be very distressing for your Dad. I have been extremely disappointed by GPs’ attitude to home visits. However, some elderly care nurses and advanced nurse practitioners will do hone visits. You need to tell the surgery that your Dad needs to be seen in his home environment.

If your Dad is unsteady on his feet then perhaps he should be seen by an OT and physio to see what aids and adaptations might help and to review the house for trip hazards. Does your father wear a pendant alarm / would he be able to use a pendant alarm if he fell at home. There are technology solutions eg bed and chair sensors, movement sensors and CCTV, which might give you some reassurance.

Most people with dementia do not want to have carers in / go to a day centre / go into respite. They lack insight into their limitations and only want help from their family, but not every family is willing and able to provide what the PWD needs; many families start off providing some help and care but as the disease progresses they find that they can longer cope without outside input (paid carers, day centres, respite).

I get the impression that there has not been any input from Social Services and perhaps it’s time to get advice from them. You might be able to access an OT or physio directly but it’s more likely that there will need to be a referral from a doctor or a social worker.
 

Felixcat1

Registered User
Feb 23, 2021
164
0
Quite honestly, I think that your Dad needs some medical and OT / physio input.

Can anything be prescribed for the hallucinations and delusions, which must be very distressing for your Dad. I have been extremely disappointed by GPs’ attitude to home visits. However, some elderly care nurses and advanced nurse practitioners will do hone visits. You need to tell the surgery that your Dad needs to be seen in his home environment.

If your Dad is unsteady on his feet then perhaps he should be seen by an OT and physio to see what aids and adaptations might help and to review the house for trip hazards. Does your father wear a pendant alarm / would he be able to use a pendant alarm if he fell at home. There are technology solutions eg bed and chair sensors, movement sensors and CCTV, which might give you some reassurance.

Most people with dementia do not want to have carers in / go to a day centre / go into respite. They lack insight into their limitations and only want help from their family, but not every family is willing and able to provide what the PWD needs; many families start off providing some help and care but as the disease progresses they find that they can longer cope without outside input (paid carers, day centres, respite).

I get the impression that there has not been any input from Social Services and perhaps it’s time to get advice from them. You might be able to access an OT or physio directly but it’s more likely that there will need to be a referral from a doctor or a social worker.
Quite the contrary. He has been assessed by social services. A care package was arranged but he refused to let the carers in. On the day the community support team came to fit the attendance alarm package, which he had initially agreed to, he sent the lovely lady packing saying he didn’t think he needed it and he is on the waiting list to have his home needs assessed by the OT. When they contacted me after his referral, I was told the waiting list is 6-9 months!
I am unable to go back to social services because as long as he is able to refuse, they have to respect his wishes as he is not consenting.
The GP has been useless recently too. I’m just a bit lost because I don’t want a crisis to occur but social services said that unfortunately for some PWD it takes a crisis before anything can be put in place.
Because he had vascular dementia his capacity fluctuates and if he knows someone is coming to see him he can switch on the most convincing hostess mode that leaves him drained afterwards.
 

thistlejak

Registered User
Jun 6, 2020
242
0
@Felixcat1 - how I empathise with you. MIL has vascular dementia and had fluctuating capacity and we had to wait for the crisis. It is soul destroying trying to help someone in this situation. You want what is best for them and everyone's hands are tied. Her social worker saw her in 'full flight' the day FIL went willingly into a care home and organised for her to be seen 3 hours later with a view to sectioning - the social worker was amazed at the change in her in front of someone new. The crisis eventually happened 6 months later and she has been in a home for almost 2 years now - very settled and accepting of personal care, medication and food.
Hang in there - you will because you are a caring person and only want what's best for your Dad.
 

Felixcat1

Registered User
Feb 23, 2021
164
0
@Felixcat1 - how I empathise with you. MIL has vascular dementia and had fluctuating capacity and we had to wait for the crisis. It is soul destroying trying to help someone in this situation. You want what is best for them and everyone's hands are tied. Her social worker saw her in 'full flight' the day FIL went willingly into a care home and organised for her to be seen 3 hours later with a view to sectioning - the social worker was amazed at the change in her in front of someone new. The crisis eventually happened 6 months later and she has been in a home for almost 2 years now - very settled and accepting of personal care, medication and food.
Hang in there - you will because you are a caring person and only want what's best for your Dad.
Thank you for your kind words x