Very confused after having carers/visitors

[Emmet]

I wonder if it is common with others. My wife has Alzheimer's and to give me time to myself we have carers for a few hours and also friends and relatives. I do however somewhat pay the price emotionally for the rest of the day and evening there is total confusion and wandering round the house ,I wish visitors could call round during the evening to see how things really are. I do sometimes wonder if it is actually counter productive.i do hope this does not seem ungratefull on my part.

No you are not alone. If, as I have, take my wife to unfamiliar places, or if you meets people she has not met before or for a long time it always causes a behaviour 'blip' soon after the visit. This can last for a day or so and sometimes involves mood changes. I always think carefully now if I take her to family gatherings or out for coffee etc. I still do this because otherwise I would tend to become isolated, but I am careful to consider the new essay of the occasion. A daily excursion to town and coffee help to acclimatise her to other people.

 

[Unsure2021]

It's almost impossible to get him out of the house, about the only time he goes out is to walk the dog and that's becoming more of an obsessive behaviour,

He can wake at 3am and not go back to sleep as he knows he has too walk the dog soon and if he goes back sleep and over sleeps the poor thing won't get walked even though there are others in house that can walk her, but that doesn't matter.

He's not a people person hates everyone and everything.

He's stopped talking to friends when they have suggested going to do stuff, he's happy just sitting on his own watching repeats on the TV as long as I'm in sight

Would love it if I could get him out from under my feet lol

 

[AbbyGee]

Sitter Tuesday - a new person at a different time, although to be fair I was contacted an hour in advance. Pleasant visit, all calm. After visit - hmmm ... twitchy and discombobulated (he, not me).
Yesterday (Wednesday) not a nice day and the evening was a total nightmare. After post dinner nap was sitting rigid, refusal to speak, took over two and a half hours to convince OH that meds were a) his, b) not poison c) helpful to him. He started to become a wee bit aggressive. I just walked away and left him to it then the magic nice fairy brought him to the kitchen, sweet as a lamb, swallowed meds and trailed upstairs to bed.
Today (Thursday) back to the normal (abeit tired) usual routine.
Expect to get a second sitter visit each week soon (am I repeating myself here?) so will give it a try.
Awww, rats. I'm beyond tired and know I'm not even making sense to myself. Best try and pour the old guy into the pit and get some zeds.

 

[Knitandpurl]

It's almost impossible to get him out of the house, about the only time he goes out is to walk the dog and that's becoming more of an obsessive behaviour,

He can wake at 3am and not go back to sleep as he knows he has too walk the dog soon and if he goes back sleep and over sleeps the poor thing won't get walked even though there are others in house that can walk her, but that doesn't matter.

He's not a people person hates everyone and everything.

He's stopped talking to friends when they have suggested going to do stuff, he's happy just sitting on his own watching repeats on the TV as long as I'm in sight

Would love it if I could get him out from under my feet lol

Gosh, know what you mean - I am so sick of ‘Salvage Hunters’ and Homes Under the Hammer,! But big big fault if I go sit in other room, go do anything else! I am so bored……

 

[Trojief]

What you're describing is, unfortunately, a very typical dementia 'thing' and ridiculously, it's one of those things that no information leaflet, or advice from any agencies or authorities offering 'support' ever mentions explicitly.
There's a behavioural response that you will hear called 'hosting' or 'show-boating' where the person with dementia is all smiles and appears completely lucid when company arrives, but is exhausted, confused and unable to process their emotions when they (finally!) leave.

This is something that really angers me about the way advice on dementia is so much of a drip-feed for us family carers! It's something pretty damn fundamental to our ability to build our own resilience and manage and inform relationships with friends and wider family and yet where is it accurately and honestly described? Usually only in response to posts like yours.

The truth is that some family and friends will just never really understand and unwittingly rub salt in the wounds by trumpeting about how pleased your PWD was to see them and how well they looked and how much they enjoyed seeing them again. You learn eventually to grit your teeth and smile politely!

Others do a fabulous disappearing act, or make up creative reasons for not visiting, like, "the house is on a really bad corner and we don't like to park there". Instead of saying, "the rest of the road is straight and there's a free car park opposite - duh!" you learn to nod and accept that they just can't deal with the situation right now.

You can only mange dementia one hour at a time, let alone one day at a time and some days, bitterly hard though it is, you have to accept there's literally nothing you can do to bring your PWD back in that moment. You can manage dementia by keeping to routines and learning to look for the signs in posture, mood and expression that signal a change for the worse. I had to learn to shut up! Before mum was diagnosed, I would try to reason with her and talk her out of it. Now I know sometimes, watchful silence is sometimes best and a good sleep can rectify an awful lot.

This is so helpful. I just recently brought my mom to my home to care for her, and it’s amazing how well she can “showboat.” Folks may even doubt that she has dementia. The closest I’ve ever come to hearing about that was when a social worker told me that people living with dementia can be really good at “masking.” She said by the time friends or family recognize that something is wrong, then that family member has probably had dementia for a while due to their ability to effectively “mask.” She said that this “masking” ability is often done quite well by those who’ve been very independent, self sufficient, autonomous, and liked doing things alone. My mother is all of that. She likely had it for 6 months to a year before she was even diagnosed. When I brought my concerns to her doctor at her regular annual physical exam, the doctor brushed it off as if it was nothing. Six months later, she identified my mother as having mild dementia. Anyway, these posts are very helpful as mom just moved in about 3 months ago and it’s been a huge adjustment. I’m learning as I go along.

 

[Seaholly]

This is so helpful. I just recently brought my mom to my home to care for her, and it’s amazing how well she can “showboat.” Folks may even doubt that she has dementia. The closest I’ve ever come to hearing about that was when a social worker told me that people living with dementia can be really good at “masking.” She said by the time friends or family recognize that something is wrong, then that family member has probably had dementia for a while due to their ability to effectively “mask.” She said that this “masking” ability is often done quite well by those who’ve been very independent, self sufficient, autonomous, and liked doing things alone. My mother is all of that. She likely had it for 6 months to a year before she was even diagnosed. When I brought my concerns to her doctor at her regular annual physical exam, the doctor brushed it off as if it was nothing. Six months later, she identified my mother as having mild dementia. Anyway, these posts are very helpful as mom just moved in about 3 months ago and it’s been a huge adjustment. I’m learning as I go along.

I remember 4 years ago when dad died suddenly and I took over most of mum's care. I knew she was having very out of character mood swings with dad and he was at his wits' end by the time he died. The absolutely crazy thing (for that read - absolute scandal as regards information about dementia is disseminated) is that had mum and dad actually realised what it was in the early days, I know they would have approached it very differently and dad would not have died still trying to figure out what had happened to his wife and why he seemingly hadn't been able to help.

It's also a very hard concept to explain to friends and relatives who don't (really) want to know. I've learned you have to be very explicit about the behaviour and stress that it is part of the disease and beyond the control of the person with dementia, but, there is something visitors can do to help.

It's also something to be aware of with care agencies, including those who 'know all about' dementia, if you are bringing in carers for short visits. We started with an agency sending a carer in 3 times a day for 2 days a week when mum was well enough to manage by herself in between visits. One carer was adamant that I had actually thrown away mum's clothes, re-arranged her kitchen and was using her living room as an office without her permission (in reality, in mum's lucid and pragmatic moments, we had worked together to bag up the clothes that no longer fit and agreed I would put out the morning's clothing on a rail for her to make things easier; likewise, we had identified the things in the kitchen she used regularly and placed everything else on higher shelves out of the way and I had permission from work to do 3 days working from her home and had set up an internet connection and made space in one corner to set up a work area) The same carer also reported that mum was always cheerful and alert with her and therefore.......................my suggestion that she may have dementia were in my head; it was my treatment of her that was making her depressed and I should not look after her because the problem was me, not her!

I would have reported them to the CQC had they not disbanded. What they did was beyond cruel, both to mum and me.

 

[Pots and Pans]

I remember 4 years ago when dad died suddenly and I took over most of mum's care. I knew she was having very out of character mood swings with dad and he was at his wits' end by the time he died. The absolutely crazy thing (for that read - absolute scandal as regards information about dementia is disseminated) is that had mum and dad actually realised what it was in the early days, I know they would have approached it very differently and dad would not have died still trying to figure out what had happened to his wife and why he seemingly hadn't been able to help.

It's also a very hard concept to explain to friends and relatives who don't (really) want to know. I've learned you have to be very explicit about the behaviour and stress that it is part of the disease and beyond the control of the person with dementia, but, there is something visitors can do to help.

It's also something to be aware of with care agencies, including those who 'know all about' dementia, if you are bringing in carers for short visits. We started with an agency sending a carer in 3 times a day for 2 days a week when mum was well enough to manage by herself in between visits. One carer was adamant that I had actually thrown away mum's clothes, re-arranged her kitchen and was using her living room as an office without her permission (in reality, in mum's lucid and pragmatic moments, we had worked together to bag up the clothes that no longer fit and agreed I would put out the morning's clothing on a rail for her to make things easier; likewise, we had identified the things in the kitchen she used regularly and placed everything else on higher shelves out of the way and I had permission from work to do 3 days working from her home and had set up an internet connection and made space in one corner to set up a work area) The same carer also reported that mum was always cheerful and alert with her and therefore.......................my suggestion that she may have dementia were in my head; it was my treatment of her that was making her depressed and I should not look after her because the problem was me, not her!

I would have reported them to the CQC had they not disbanded. What they did was beyond cruel, both to mum and me.

That sounds awful. Feeling for you. I know my OH moans to his weekly carer (full day) about me but I think she has seen enough/ knows enough to appreciate its not all true - after all I only got a carer after carer assessment felt I needed the break. But he has been nothing but sweet and helpful with her. Damn showboating! On the other hand a friend I asked to come be with OH while I had an evening out ( he us OH's oldest friend) said after the first time how he had been ' much better' than I had led him to believe. Changed his mind a week or so ago when we spent a day together (4 of us) and he saw OH throw a tantrum and nearly attack his girlfriend! Now he calls me to see if I am ok ... Am now wondering how long it will be before he throws a wobbly with carer. Hoping she will still come!