Hi, I'm the main carer for my Stepdad who 79 & has Vascular Dementia. He's been getting more confused recently & there's been a few occasions where he's emptied cupboards because 'he's moving'. Today he has completely emptied his wardrobe & other cupboards & brought everything downstairs, again because he thinks he's moving. Has anyone else experienced this or similar? He has also forgotten that my mum has died (18months ago) he thinks she's staying at my house & that he's just not seen her for a while. At first I told him the truth but now it just seems easier to change the subject.
Thinks he's moving...
- Thread starter Smiffy73
- Start date
Very common I’m sorry to say. Emptying cupboards and packing were around year two I think. We’re now on year six and have moved on through at least a dozen phases since then. I am more sanguine about it but I used to feel I was going mad! As husbands health has declined he has less energy to Indulge in such stuff.
@Smiffy73
Hi same thing here, Mum has vascular, she is moving as ‘the people’ want her out, she doesn’t believe it is her house just somewhere she is staying.
We have moved on a little she now goes to the bedroom without asking where do I sleep tonight.
When she say ‘the people’ want her out I tell her they have to come and talk to me first.
It’s so difficult isn’t it, I’ve no idea on the magic answer of how to successfully manage it, I just ignore or distract with some nonsense.
Take care. X
Hi same thing here, Mum has vascular, she is moving as ‘the people’ want her out, she doesn’t believe it is her house just somewhere she is staying.
We have moved on a little she now goes to the bedroom without asking where do I sleep tonight.
When she say ‘the people’ want her out I tell her they have to come and talk to me first.
It’s so difficult isn’t it, I’ve no idea on the magic answer of how to successfully manage it, I just ignore or distract with some nonsense.
Take care. X
Yes I've been changing the subject as much as possible. It works to a certain degree but he also looks at me as if I should know what he is talking about. I just never know what I'm going to walk in to each day at the minute.
How long has your mum had it? We're 3yrs in now.
Thanks for your reply. Part of me is worrying about this & part of me thinks that as long as he's safe, does it really matter? I think he's beginning to not recognise his surroundings as he's saying things like "We used to live around here." In your experience is it likely he'll realise its his home & move onto something else or is that gone forever now?
Well John doesn't do the packing anymore but he doesn't recognise this house although he chose it and talked me into buying it eight years ago. He has stopped wanting to go back to his childhood home though and seems to accept that wherever I am is good enough for him.
None of this is thought through rational thinking. He just goes along with life as best he can. His obsessions are fewer now we are six years into the diagnosis.
None of this is thought through rational thinking. He just goes along with life as best he can. His obsessions are fewer now we are six years into the diagnosis.
My dad doesn't recognise his home all the time now. Some days I'll get there and he'll be sitting in the hall with his hat and coat on waiting for me to take him somewhere, though he never knows where. I can usually distract him with food or a cuppa and put the telly on for him to make him feel "at home" again. It slowly comes back to him. I'm dreading the day it doesn't.
With mum we just had to go with the flow. She had a downstairs bedroom in our house with an adjoining bathroom through a small hall. Her particular trigger was if someone used the bathroom. She would go in and remove all her toiletries, towels, plants and believe that she was in a hotel and sharing a bathroom. So we didn't use her bathroom. Then it moved on to flannels. Pink flannels were OK, they were hers. Any other colour was someone else's and the removals started again. Then it was the person in the bathroom - which was her reflection. We didn't make any comments about it - apart from telling her that the person in the bathroom had left. Strangely, the mirror in her bedroom did not trigger this response.
We were fortunate in her being so laid back and 'lazy' she would never dream of doing her own packing so we could circumvent the moving house bit with a cup of tea, a jigsaw, a conversation about the latest scandal or pointing out that as it was raining we were postponing everything for a few days.
We were fortunate in her being so laid back and 'lazy' she would never dream of doing her own packing so we could circumvent the moving house bit with a cup of tea, a jigsaw, a conversation about the latest scandal or pointing out that as it was raining we were postponing everything for a few days.
Hi,
Bless you it’s so tough we try, I ask myself do I try too hard.
The usual answer on how long, hindsight is wonderful, I guess Mum has had this around 5 years, officially diagnosed nearly two years.
Just getting the same as you, who knows what you’re going to walk into. I go every night after work, late leaving work tonight, so getting myself wound up now, as I’ll be later than normal.
Strangely, spoke to Mum today and she had been doing some cleaning, quite genuinely she had done it too. I don’t know when she has last done that unprompted.
It’s so weird, almost like normal and she is mid change of medication, that awful dilemma should she come off the medication, is she better off it, does she start the new meds.
Who knows, worries you to the core doesn’t it.
Take care of you. x
I worry if I can't get to see him (which isn't very often) but he forgets that I've been anyway so I try to tell myself that I can't do it all. I have 3 school age children & work as well so sometimes it is hard to fit everything in.
He refuses help from anyone either saying he'll do it himself (& then doesn't) or that I do it. My friend told me that just because he's refusing other people doesn't make it my responsibility but thats hard to do as you can't just leave him can you...
Blimey, I find it so hard and don’t have 3 children to organise, I have just the work thing, you are amazing, hats off to you.
So agree we cannot do it all but boy do we try, for me it’s because I think no one can do it as well as me
that’s so to my detriment. Hmmm, from my reading on here, the actual responsibility for caring is not with us, it’s with the local authorities. I guess you could call ours the love caring and authorities have practical responsibility.
Mum has carers in twice a day and day centre 3 times a week.
I’ve read great advice on here saying get loved ones to accept help by saying its a friend of yours that is trying to get a job and is learning, would they help them learn how to do such and such. Or even its a free service being tested out, you paid your stamp, you deserve it. I tell Mum everything is free, she accepts it more.
I found it a slog getting the people you want on board. I had to commit some time to bringing it together, but worth it. Admiral nursing, really help or if you have a local carer centre, both will co ordinate a lot for you. Unfortunately it’s he who shouts loudest, gets the results. Mums mental health Doc is great and will make things happen too. It’s just finding the right person who will make it happen. I wrote one letter and sent to, GP, local Alzheimers society, Age Concern, Social Services, followed by assertive phone call.
The various organisations have been through the refusals over and over so knew what to say to Mum. I primed them before any appointments so they knew how Mum would react.
I didn’t and won’t give in, my Mum is going to be looked after by professional people, so I can administer the hugs and kisses.
Sorry if I’m rambling and repeating everything you’ve heard before.
Good luck, let me know how you go. X
Dollybird16, how did you get home carers? My mum is in hospital, has been there three weeks after a fall, but her mental health has deteriorated so much they say she now needs 24 hr care and cannot live alone any more. I travel with work and cannot be there even every day, although I was doing 3 hours a day prior to the fall, she was able to be left for a few days as long as I stocked up on food for her. But now she seems unable to even feed herself. I have been fighting for 'care at home' but she has no funds for this and I know she dreads being sent to a care home. It's very distressing for both of us. What are the right things to say /ask? Thanks x
hello @silvergirluk
welcome to TP
as your mum is in hospital ask the hospital social worker and/or discharge manager about arranging a care package to be put in place before your mum is discharged
it may be possible for her to have a reablement package for some weeks, which shouldn't require funding by her
if your mum's assets are below £23250 the Local Authority Adult Services will carry out a financial assessment and will part fund her care, so it shouldn't be a problem that she has no funds - if she owns her own home and has care at home, the house does not form part of the assessment - should she move into a care home, the value of the house is taken into account
a care package can be upto 4 home care visits a day to help with personal care, taking meds and meals, maybe some time at a day care centre, respite, and a visit to the house by an OT to suggest aids and adaptions to the proprty to support your mum
LAs have a policy to have a person live in their own home for as long as possible - so this is likely to be the option suggested - if it's not, do think carefully as it's not often that a move straight into a care home is recommended
if this option is suggested, your mum should be offered at least one placement, but it doesn't have to be the home family may have chosen themselves
welcome to TP
as your mum is in hospital ask the hospital social worker and/or discharge manager about arranging a care package to be put in place before your mum is discharged
it may be possible for her to have a reablement package for some weeks, which shouldn't require funding by her
if your mum's assets are below £23250 the Local Authority Adult Services will carry out a financial assessment and will part fund her care, so it shouldn't be a problem that she has no funds - if she owns her own home and has care at home, the house does not form part of the assessment - should she move into a care home, the value of the house is taken into account
a care package can be upto 4 home care visits a day to help with personal care, taking meds and meals, maybe some time at a day care centre, respite, and a visit to the house by an OT to suggest aids and adaptions to the proprty to support your mum
LAs have a policy to have a person live in their own home for as long as possible - so this is likely to be the option suggested - if it's not, do think carefully as it's not often that a move straight into a care home is recommended
if this option is suggested, your mum should be offered at least one placement, but it doesn't have to be the home family may have chosen themselves
Hi
Hi, hospital social worker, sorted it all.
I’m pretty sure there could be no discharge from hospital without a care plan.
Care plan includes carer support and occupational therapy visit to the home to make sure it is all safe for Mums return. Mum had rails fitted on the stairs and outside, raised toilet seat, commode, chair cushion, personal alarm, key safe.
The hospital social worker (sw) was very approachable, she left her mobile number with Mum - hmmmmm, not the smartest move. SW was good after that I text her, saved us both time.
Mum could not leave hospital until social worker was happy everything was in place. You can be a bed blocker it takes time for them to sort, but hey ho.
All sounds straightforward, the first fall Mum had, the worst so far, she left hospital with nothing at all, that was after a month in hospital, but when you don’t know the system.
Ask the ward nursing staff if referral to social worker has been made, if not ask when, date required, if no response go straight to Patient liaison, don’t wait it can take some time, so sooner better. Of course timing is everything, carers don’t get organised until they know when your Mum is going home.
Given you are not close by perhaps contact patient liaison to ask if they can be liaison with the social so you can be there for the assessment. Our Sw did strict 9-5 mon to fri.
I understand the maximum number of care visits each day is four, they do personal care, meds, prep meals if required. I learnt from here when talking to social worker you must base it on the worst possible day and include ability based on health today.
Be aware anything you say you can do they will let you do. Remind yourself you are the love carer, not the practical carer.
If visiting time are difficult check out Johns campaign, if hospital is signed up, you visit anytime that suits you. Many wards don’t know, so be prepared to point them to the internet.
http://johnscampaign.org.uk/#/participants
Worked fab for me, I was there for Doc rounds and getting Mum off to sleep and moving around, making sure she ate.
Good luck, keep asking. Some fabulous people here, if I can’t answer, I’ll link someone in who may know. X
Hi, hospital social worker, sorted it all.
I’m pretty sure there could be no discharge from hospital without a care plan.
Care plan includes carer support and occupational therapy visit to the home to make sure it is all safe for Mums return. Mum had rails fitted on the stairs and outside, raised toilet seat, commode, chair cushion, personal alarm, key safe.
The hospital social worker (sw) was very approachable, she left her mobile number with Mum - hmmmmm, not the smartest move. SW was good after that I text her, saved us both time.
Mum could not leave hospital until social worker was happy everything was in place. You can be a bed blocker it takes time for them to sort, but hey ho.
All sounds straightforward, the first fall Mum had, the worst so far, she left hospital with nothing at all, that was after a month in hospital, but when you don’t know the system.
Ask the ward nursing staff if referral to social worker has been made, if not ask when, date required, if no response go straight to Patient liaison, don’t wait it can take some time, so sooner better. Of course timing is everything, carers don’t get organised until they know when your Mum is going home.
Given you are not close by perhaps contact patient liaison to ask if they can be liaison with the social so you can be there for the assessment. Our Sw did strict 9-5 mon to fri.
I understand the maximum number of care visits each day is four, they do personal care, meds, prep meals if required. I learnt from here when talking to social worker you must base it on the worst possible day and include ability based on health today.
Be aware anything you say you can do they will let you do. Remind yourself you are the love carer, not the practical carer.
If visiting time are difficult check out Johns campaign, if hospital is signed up, you visit anytime that suits you. Many wards don’t know, so be prepared to point them to the internet.
http://johnscampaign.org.uk/#/participants
Worked fab for me, I was there for Doc rounds and getting Mum off to sleep and moving around, making sure she ate.
Good luck, keep asking. Some fabulous people here, if I can’t answer, I’ll link someone in who may know. X
Ditto all the above. Hospital social worked sorted carers upto four times a day for my mum. First six week's free even if you are self-funding. Not sure if that's the case in every area.
One thing to watch for. My mum said she lived with me, which she did, so we didn't need any external help. She said she would be fine. They believed her I had to really put my foot down with the staff on the ward. Then I found out about carers etc. They said my mum had the mental capacity to make the decision. Granted she wasn't as bad then as she is now. But even so it was obvious she couldn't look after herself.
One thing to watch for. My mum said she lived with me, which she did, so we didn't need any external help. She said she would be fine. They believed her
I had to really put my foot down with the staff on the ward. Then I found out about carers etc. They said my mum had the mental capacity to make the decision. Granted she wasn't as bad then as she is now. But even so it was obvious she couldn't look after herself.
@silvergirluk
Hi, firstly apologies I just thought, I referred to your Mum, when we’re talking about your dear Dad.
Then while thinking about you, it crossed my mind has your Dad got attendance allowance, Age concern, carer centre, CAB will help fill the form.
Did you have any chance to reach out to anyone today? I know when your working it’s hard to find the time and then the kids. You’ll get it done, in time. X
Hi, firstly apologies I just thought, I referred to your Mum, when we’re talking about your dear Dad.
Then while thinking about you, it crossed my mind has your Dad got attendance allowance, Age concern, carer centre, CAB will help fill the form.
Did you have any chance to reach out to anyone today? I know when your working it’s hard to find the time and then the kids. You’ll get it done, in time. X
Thank you so much for your reply - sounds like you have lots sorted which is good. He has a Dementia Navigator who is lovely & to be fair everyone I've dealt with have been great. It's the not knowing what he needs really that I find difficult.Blimey, I find it so hard and don’t have 3 children to organise, I have just the work thing, you are amazing, hats off to you.
So agree we cannot do it all but boy do we try, for me it’s because I think no one can do it as well as me
Hmmm, from my reading on here, the actual responsibility for caring is not with us, it’s with the local authorities. I guess you could call ours the love caring and authorities have practical responsibility.
Mum has carers in twice a day and day centre 3 times a week.
I’ve read great advice on here saying get loved ones to accept help by saying its a friend of yours that is trying to get a job and is learning, would they help them learn how to do such and such. Or even its a free service being tested out, you paid your stamp, you deserve it. I tell Mum everything is free, she accepts it more.
I found it a slog getting the people you want on board. I had to commit some time to bringing it together, but worth it. Admiral nursing, really help or if you have a local carer centre, both will co ordinate a lot for you. Unfortunately it’s he who shouts loudest, gets the results. Mums mental health Doc is great and will make things happen too. It’s just finding the right person who will make it happen. I wrote one letter and sent to, GP, local Alzheimers society, Age Concern, Social Services, followed by assertive phone call.
The various organisations have been through the refusals over and over so knew what to say to Mum. I primed them before any appointments so they knew how Mum would react.
I didn’t and won’t give in, my Mum is going to be looked after by professional people, so I can administer the hugs and kisses.
Sorry if I’m rambling and repeating everything you’ve heard before.
Good luck, let me know how you go. X
He won't go out so any groups etc are out of the question. He does have carers go in twice a day but they're there to put his creams on as he has psoriasis. He also has Meals on Wheels delivered which aren't great but at least its a hot meal & someone else checking on him each day. He's still able to shower & dress himself (although the showers are becoming less frequent as is changing his clothes) so he doesn't need much personal care yet.
I do enjoy (not sure that's the right word really) reading the posts on here as it does give you an insight into other people's situations.
