My husband is losing sense of 'home'

[mickeyplum]

My husband of 92 was diagnosed with vascular dementia 4 years ago and until now has had mainly a memory problem with which has worsened over time. A couple of weeks ago there were episodes of a new behaviour.

I) He said he felt like he was on holiday and was thinking about what a long journey home.
2) He was watching a pub scene in a TV film and said he felt like he was there in the bar with the other blokes having a drink.
Of course I followed all the techniques I've learned on Tipping Point and he was ok.

Today I returned home from a 10day stay in hospital during which I found he was better for him if I phoned him regularly to reassure him. He stayed at home, with our 3 adult children sharing his care on a rota. They coped very well with him and their own commitments but last night he was unsure of where he lived and told my daughter J this house is exactly like his own house.
Today he said the house we went to yesterday was exactly like this one. I said I didn't go and he must have gone with J but that all houses look the same anyway. He seemed Ok with that but then later he said, 'Isnt if funny when you look out the window and you feel right unsettled? ' I said, 'It's Ok. It's cos I've been away for a few days but I'm home now and you'll be ok.'
Then he asked, 'So is this our house then? Are we going to live here all the time?' I said yes, forever and ever amen and he was ok after that.

I know it's not all about me, but I feels so upset and guilty for being away from him and causing this insecurity and feeling of being lost. We have 3 wonderful kids who adore him but I know it must have been confusing , maybe scary, fr him to not know who was doing his breakfast, lunch and tea or see him safely to bed from one day to another. His routine has been complety different.
Can anybody advice me. Is this the start of a behaviour of might he settle down now I'm home?
Thanks

 

[MartinWL]

I have no personal experience on this (yet) but from what I read here this is not unusual and whilst your absence might have unsettled him it probably wasn't the cause. Dementia is progressive so many of us here know we have worse to come. You are very lucky to have a supportive family to help!

 

[mickeyplum]

I have no personal experience on this (yet) but from what I read here this is not unusual and whilst your absence might have unsettled him it probably wasn't the cause. Dementia is progressive so many of us here know we have worse to come. You are very lucky to have a supportive family to help!

Thanks so much. How very true that we all know we have worse to come but thank God for Talking Point and the folks like you who care about the carers.

 

[Palerider]

Hello @mickeyplum

Its hard to tell how your husbad will be now you are back with him.

Certain people behave as anchors for someone with dementia, especially those closest to them, so it may be that now you are home this will settle down. But it may also mean things have advanced and he no longer recognises home the way he did before. In the first instance give yourselves some time to see how things go -if things don't settle than you may have to consider if this is the disease progressing.

I'd certainly have a quick chat with your family as well because if it doesn't settle he may start trying to wander and find where home is, simply because his memory of home is not where home is now -its just a memory of somewhere that felt safe although you know it no longer exists.

 

[Thethirdmrsc]

I am with my OH almost 24/7 and some days he is not quite sure we live here, and will say, that it’s a new start for us, he thinks there are people downstairs that do breakfast, And can’t quite grasp that it’s our house. But I just go with the flow.

 

[AbbyGee]

My OH often peers round and asks if this is where he lives. I assure him it's our home and point out the familiar things around us. He'll often ask if I live here too. I assure him we're married and I do indeed live here. Sometimes he'll think I'm the 'Lady that comes in to cook and clean' and ask if I'm going home when I've finished - despite the fact I'm in PJs and dressing gown!
Strange and mysterious times. I'm no longer surprised or hurt by his questions. It's easier to just answer and move on.

 

[Vitesse]

My OH often peers round and asks if this is where he lives. I assure him it's our home and point out the familiar things around us. He'll often ask if I live here too. I assure him we're married and I do indeed live here. Sometimes he'll think I'm the 'Lady that comes in to cook and clean' and ask if I'm going home when I've finished - despite the fact I'm in PJs and dressing gown!
Strange and mysterious times. I'm no longer surprised or hurt by his questions. It's easier to just answer and move on.

I take the same view as you. My husband hasn’t known me for over a year, i just seem to be a new lady who’s slotted into his life. He recently has started not to recognise our home, sometimes asking whether we are going home, sometimes whether I will be going home. There is no point in explanations, so I just say this is our home, just you and me. Seems to appease him!

 

[mickeyplum]

I don't know what I'd do without Talking Point. There is always someone there who has been/is going through exactly the same thing and it's so helpful to take on a bunch of well tried and tested methods and see which works best - maybe a bit from all your suggestions. Thanks

 

[Jaded'n'faded]

My husband of 92 was diagnosed with vascular dementia 4 years ago and until now has had mainly a memory problem with which has worsened over time. A couple of weeks ago there were episodes of a new behaviour.

I) He said he felt like he was on holiday and was thinking about what a long journey home.
2) He was watching a pub scene in a TV film and said he felt like he was there in the bar with the other blokes having a drink.
Of course I followed all the techniques I've learned on Tipping Point and he was ok.

Today I returned home from a 10day stay in hospital during which I found he was better for him if I phoned him regularly to reassure him. He stayed at home, with our 3 adult children sharing his care on a rota. They coped very well with him and their own commitments but last night he was unsure of where he lived and told my daughter J this house is exactly like his own house.
Today he said the house we went to yesterday was exactly like this one. I said I didn't go and he must have gone with J but that all houses look the same anyway. He seemed Ok with that but then later he said, 'Isnt if funny when you look out the window and you feel right unsettled? ' I said, 'It's Ok. It's cos I've been away for a few days but I'm home now and you'll be ok.'
Then he asked, 'So is this our house then? Are we going to live here all the time?' I said yes, forever and ever amen and he was ok after that.

I know it's not all about me, but I feels so upset and guilty for being away from him and causing this insecurity and feeling of being lost. We have 3 wonderful kids who adore him but I know it must have been confusing , maybe scary, fr him to not know who was doing his breakfast, lunch and tea or see him safely to bed from one day to another. His routine has been complety different.
Can anybody advice me. Is this the start of a behaviour of might he settle down now I'm home?
Thanks

I'm concerned because you say you've just come out of hospital after 10 days. Who is looking after you? I'm also concerned that you feel guilty because being in hospital left him on his own. You can't put his health needs before your own - please don't.

I think you need to step back and have a long talk with your three children about the situation going forwards. It's too much for you to do by yourself.

 

[mickeyplum]

I'm concerned because you say you've just come out of hospital after 10 days. Who is looking after you? I'm also concerned that you feel guilty because being in hospital left him on his own. You can't put his health needs before your own - please don't.

I think you need to step back and have a long talk with your three children about the situation going forwards. It's too much for you to do by yourself.

Thanks so much for your concern. I'm afraid I'm my own worst enemy and have made my family exasperated with my continuous refusals of allowing them to get outside help. It's so hard to give up independance after having a career managing other people and I couldn't bear the thought of a team of people 'taking over' my home and my life and stating when I go to bed etc.
My being in hospital has finally made me see the light. My husband was better left in his won home but even so has been completly confused by my daughters and son caring for him on a rota, even though they have looked after him in a wondeful way which was no more than I expected of them all.
My family are sorting out help for me and at present the crisis team has stepped in for the next 2 days .
The first worker arrived at 7.30 today to help me get up, in spite of my biggest problem of feeling faint and shaky in the mornings and needed to lay in bed till I feel able.
My husband was still asleep so she went in his room and said good morning and she was here to help me up cos i'd been in hospital (he's forgotten hospital and i'm trying not to remind him). She was a lovely person, cheery and capable and watched over me while I struggled to wash and helped me to dry myself then said tomorrow 'we'll' have a shower. I explained that I can't shower at that time as that's when I'm dizziest, She said we'll get a stool then.
I realise they have other people to attend to and you can't ask for a special time for them to come but all night I'd been dreading it being a man who came to get me up as they said it could be either. My husband is scared of any strangers in the house and he would have flipped.
I suppose I will get used to having help but at present it just feels a bit more stressful and like I've no control over anything.

 

[MartinWL]

Generally you can't do sex discrimination but I am sure that legally you can for intimate personal care i.e where the person has to undress. If you need to be helped to shower it seems reasonable to me that you can demand a carer of the same sex as yourself.

 

[Sarasa]

I can see you need help @mickeyplum both for yourself and for your husband, but I'm not quite sure that the help you've got is actually useful for you if it isn't actually doing what you want doing. I know it's early days and this care package might start working well when they know what you want as well as what needs to be done. It does sound as though you are still far from well though, and you really need to build yourself up before caring for your husband. Maybe it's time for a long conversation with your children as to what to do next. I was wondering if both you and your husband going into respite care for a couple of weeks might help you get stronger and your husband feel Ok because he would be able to see you. Just an idea, but I am concerned that you could end up back in hospital unless you get help that actually makes things better for you.

 

[canary]

You can request a later time if its more helpful @mickeyplum We have carers come in to help OH get washed and dressed and as he sleeps till 9.00 most mornings we have someone coming in after then

 

[mickeyplum]

thanks again to you lovely people. My daughter has contacted dementia help line today who adviced that my husband needs another GP assessment as his condition has deteriated. I have emailed the GP to request this but can't see what advice they can give. He is too 'aware' generally jut now to be placed in a home and it would break his heart

 

[Sarasa]

Hi @mickeyplum , how are things this week? Has the GP been out to see your husband? As for your husband being 'aware' I think acutely still having awareness helps with settling into a home as then the person with dementia can get involved with some of the activities, make new friends etc. etc. Having said that of course there are far fewer activities going on in care home due to covid restrictions and visiting will be very tricky too.
Whatever you and your family decide, don't forget to look after you You haven't been well and need to get better to be able to still care for your husband whether at home or in a care home

 

[mickeyplum]

Feeling much stronger now thanks. Phsio iscoming weekly to build my stength and the confidence to take a short 5 min walk, which I did until I went in hopital, Family arranged private carers coming for an hour when we got up and 45 mins at teatime. I struggled to find them things to do as I'd already prepard brekfast, it was just - make the beds, wash the few breakfast things and maybe dust the bedrooms. At teatime it was 3 mins to heat the ready meals
They were all very kind and willing but after 8 days I stopped the service and decided I needed to do little jobs myself - if only as a break from sitting all day. I reasoned it was betterto save themoney for when we need help with showering and other personal care. They will keep us on their books and we can pick up the service again whenever.