• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Does anyone else feel like this.

Francy

Registered User
Dec 3, 2018
70
Co Down
Oh no no no!:) We don’t still share a bedroom, I moved into the front bedroom about 2yrs ago! Like you say it’s my sanctuary , but he still keeps coming in bombarding me with questions until I loose patience and make him get into bed, like he’s a little child! So sad isn’t it.:(
I get the same in the morning. He is happy to go to bed at night but wakes ridiculously early , 5.00, 6.00, knocking on my door, or talking outside, or barging in, also toddler like behaviour.
Fishgirl, it's more than sad, it's down right tragic. There is such a vulnerability in PWD, how frightening there world must be at times. It's hard not to be impatient at times as it can be so very tiring to look after them 24/7. XXXX
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,410
Kent
I tell him that's OK he can stay at home, but he won't on his own and won't have anyone in to sit with him, so he has doesn't want me to go out
I used to tell my husband this and he found staying at home alone preferable to going out when he didn`t want to.

I continued leaving him for a maximum of two hours to go to Yoga and a support group.

The time came when he opened the door for me as soon as I got to the gate. [ we have a very long drive ]

This made me realise he was waiting at the window all the time looking for me, even though I`d left a note telling him where I was and when I`d be home.

I didn`t think it fair to cause him even more anxiety than he had so arranged an agency carer to be with him while I was out.

Do you think this would be possible for you @Francy. I know you said your husband won`t have anyone to sit with him but I told my husband someone was coming to help me clean the house to help my arthritis. I also asked him to keep an eye on them while I was out.
 

Francy

Registered User
Dec 3, 2018
70
Co Down
Hi @Francy That description of a drowning pulling his rescuer down with him is very apt.

It sounds to me as though he is sundowning (a period of increased confusion and agitation - usually in the evening and night). You can get medication to help the agitation. Go and see your GP and ask for a referral to the Community Psychiatric Team for assessment.
You wont be able to help him if you drown too.
HI Canary,
Hi @Francy That description of a drowning pulling his rescuer down with him is very apt.

It sounds to me as though he is sundowning (a period of increased confusion and agitation - usually in the evening and night). You can get medication to help the agitation. Go and see your GP and ask for a referral to the Community Psychiatric Team for assessment.
You wont be able to help him if you drown too.
Hi Canary,I'm watching the situation very carefully, don't want to preempt situation. Have been in touch with the Psychiatric unit and he is due to see them shortly. I don't want to go under but I get so very tired treading the water, it is an exhausting business for each and every one of us. I will survive, but not unscathed, who will though. XXXX
 

Francy

Registered User
Dec 3, 2018
70
Co Down
I used to tell my husband this and he found staying at home alone preferable to going out when he didn`t want to.

I continued leaving him for a maximum of two hours to go to Yoga and a support group.

The time came when he opened the door for me as soon as I got to the gate. [ we have a very long drive ]

This made me realise he was waiting at the window all the time looking for me, even though I`d left a note telling him where I was and when I`d be home.

I didn`t think it fair to cause him even more anxiety than he had so arranged an agency carer to be with him while I was out.

Do you think this would be possible for you @Francy. I know you said your husband won`t have anyone to sit with him but I told my husband someone was coming to help me clean the house to help my arthritis. I also asked him to keep an eye on them while I was out.
HI Grannies G, I wish, he goes ballistic if I even mention it. I've started going to an exercise class and take him with me, my arthritis is going bonkers and I need this class to help. He is so crumpy about me going because he has to get up early, thinks I inconsiderate and I should stay at home to be with him, but he's so afraid of being at home on his own he comes with me. Now it's complicated, but it's OK. I'm due a visit soon from social services for a carers assessment so we'll see what comes from that. Meantime, well we're managing, happy? that's another thing. XXXX
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,410
Kent
I'm due a visit soon from social services for a carers assessment so we'll see what comes from that
I hope they`ll have something positive for you @Francy.

Just keep plodding on with the idea you are the one who needs help, not your husband and perhaps the penny might drop.
 

Fishgirl

Registered User
Sep 9, 2019
134
Hello Jenniferjean, I totally under that. I had to give up my crafting not due to lack of space more lack of me time, my time is spent mostly caring for JH, very demand at times and I do get out to walk for a little while, weather permitting. Also we used to do the craft fairs, which we both loved but obviously that had to stop to,we both miss that very much, there was a lovely community feel to it. You must keep up with your crafts as long as you can, it is great for escapism, it is wonderful do something creative, I hope you can enjoy for as long as possible. XXXX
My craft thing was jewellery making, just for family and friends,although before the dementia started, I was planning to start selling it at local craft fairs
(Just a pipe dream now:(). I’ve had to give it up completely now because it requires such a lot of concentration and because he’d come and sit next to me and constantly interrupt, I was making so many mistakes and getting so frustrated, it just wasn’t worth doing it anymore, just another casualty in the battle against dementia, I suppose!:( xx
 

jenniferjean

Registered User
Apr 2, 2016
669
Basingstoke, Hampshire
This made me realise he was waiting at the window all the time looking for me, even though I`d left a note telling him where I was and when I`d be home.

I didn`t think it fair to cause him even more anxiety than he had so arranged an agency carer to be with him while I was out.
I have been told by various carers that my husband spends quite a bit of time looking out of the window waiting for me to come home. It makes me feel like we're joined at the hip. The new arrangement I have starting next week is the carer will be taking my husband out during my take-a-break. That has to be better.
 

Roseleigh

Registered User
Dec 26, 2016
297
We're in a two bedroom flat but the second bedroom is too small to include a bed now that I have a desk and my craft stuff in there. I just hope I can manage things as they are as I couldn't bare having to get rid of my crafting and my desk. It's my sanctuary.
Why not put a single bed for him in the small room and you have the larger room as both a bedroom and study? Put a single bed in there too if you currently have a double. And maybe your own TV.
 

Francy

Registered User
Dec 3, 2018
70
Co Down
My craft thing was jewellery making, just for family and friends,although before the dementia started, I was planning to start selling it at local craft fairs
(Just a pipe dream now:(). I’ve had to give it up completely now because it requires such a lot of concentration and because he’d come and sit next to me and constantly interrupt, I was making so many mistakes and getting so frustrated, it just wasn’t worth doing it anymore, just another casualty in the battle against dementia, I suppose!:( xx
Fishgirl, that's sad as it's so nice to have a craft that you enjoy. I loved my craft and it gave me the greatest pleasure to see the look on people's faces when they saw my workload I don't have thnk I'll ever go back to it. JH is constantly harassing me to go back to craft fairs, firstly we no longer have our car as he sold it, there was no way he was letting me go out on my own and he is not a good passenger so wouldn't sit in the car with me. Believe me I'm not a bad driver, the problems are all his. But you lose heart don't you when you just can't do what you want. I still have all my craft materials but may well sell them, right now even that is beyond me. I would like to think you may get back to your jewellery making, even if it is just for family and friends, are there any classes or groups you could join that would let you continue out of the house, just a thought. Crafting is so therapeutic. XXXX
 

Francy

Registered User
Dec 3, 2018
70
Co Down
I hope they`ll have something positive for you @Francy.

Just keep plodding on with the idea you are the one who needs help, not your husband and perhaps the penny might drop.
Grannies G, I didn't think on it like that and you are so right, JH is getting all the help he needs from all the sources available, including me in constant attendance. You are right it is me who needs help. I thank you for pointing this out to me, so simple and yet I just kept thinking of JH, strange how we always put ourselves at the back of the queue. XXXX
 

jenniferjean

Registered User
Apr 2, 2016
669
Basingstoke, Hampshire
Why not put a single bed for him in the small room and you have the larger room as both a bedroom and study? Put a single bed in there too if you currently have a double. And maybe your own TV.
It's a possibility to bear in mind for the future, I hadn't thought of that. At the moment I'm happier to be in the same room as him so I can keep an eye on him.
 

Francy

Registered User
Dec 3, 2018
70
Co Down
It's a possibility to bear in mind for the future, I hadn't thought of that. At the moment I'm happier to be in the same room as him so I can keep an eye on him.
Sorry I think I called you by the wrong name,apologies. You like me need to escape sometimes, even if it is just for a short while. I'm lucky in as much as I live by the beach and that is my refuge, when the going gets tough I pound the beach, I need to escape and I know JH will be fine for a short time. Please don't get suffocated, you need to breathe in you own air in your own space. If I didn't get these short walks, I couldn't go on, I couldn't continue to look after my husband. In all of this s..t it's easy to forget we have our own lives, we deserve more, we deserve better but must just take what little there is for the time being. Look after yourself, you too are important. XXXX
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,410
Kent
Grannies G, I didn't think on it like that and you are so right, JH is getting all the help he needs from all the sources available, including me in constant attendance. You are right it is me who needs help. I thank you for pointing this out to me, so simple and yet I just kept thinking of JH, strange how we always put ourselves at the back of the queue. XXXX
Now you have realised it, it might be time to sell this idea to your husband in a roundabout way.

I persuaded my husband to allow people in [ to help with the cleaning ] to give me more time for him. Where he refused to accept he needed help he was quite happy for me to have help.

This is how I managed to get carers in on the pretext they were cleaners. They were happy to go along with this.
 

Fishgirl

Registered User
Sep 9, 2019
134
Fishgirl, that's sad as it's so nice to have a craft that you enjoy. I loved my craft and it gave me the greatest pleasure to see the look on people's faces when they saw my workload I don't have thnk I'll ever go back to it. JH is constantly harassing me to go back to craft fairs, firstly we no longer have our car as he sold it, there was no way he was letting me go out on my own and he is not a good passenger so wouldn't sit in the car with me. Believe me I'm not a bad driver, the problems are all his. But you lose heart don't you when you just can't do what you want. I still have all my craft materials but may well sell them, right now even that is beyond me. I would like to think you may get back to your jewellery making, even if it is just for family and friends, are there any classes or groups you could join that would let you continue out of the house, just a thought. Crafting is so therapeutic. XXXX
Hi Francy,
You have inspired me to give it another go!:) even if it’s only stretchy bracelets & simple necklaces, that don’t need a lot of thinking about. I couldn’t get out to classes or groups, because like your OH, mine won’t let me out of his sight either:( Now he’s even getting paranoid about me being on my phone so much more, I think he’s beginning to think I’m having an affair by text!;) xx
 

jenniferjean

Registered User
Apr 2, 2016
669
Basingstoke, Hampshire
You like me need to escape sometimes, even if it is just for a short while. I'm lucky in as much as I live by the beach and that is my refuge, when the going gets tough I pound the beach, I need to escape and I know JH will be fine for a short time.
I must admit I do envy you that. I'd love to be near the beach, but I'd be happy to walk anywhere. Unfortunately I can't leave my husband on his own, I don't know whether he'd try to follow me and get lost. I do leave him with a carer once a week. I'd be happy to walk and take my husband with me but that is now difficult as his walking is so bad now. He has a walker but even with that he really struggles now.
 

kindred

Registered User
Apr 8, 2018
2,344
HI Canary,

Hi Canary,I'm watching the situation very carefully, don't want to preempt situation. Have been in touch with the Psychiatric unit and he is due to see them shortly. I don't want to go under but I get so very tired treading the water, it is an exhausting business for each and every one of us. I will survive, but not unscathed, who will though. XXXX
What an interesting point about whether we survive unscathed. What will we be left with? I'm still left with an overwhelming anxiety about travel (because could not go far as needed to get home quickly - my husband was very destructive). And my courage, once so high, is a lot lower now. I have to have a cup of tea before I go to the supermarket even, and have got rid of the car.
Keith went to a nursing home in 2018 and died at the end of this July so in theory my journey with dementia is over. I feel I was in a horror story and cannot help but keep looking back. Thank you for raising this. Kindred.
 

Fishgirl

Registered User
Sep 9, 2019
134
What an interesting point about whether we survive unscathed. What will we be left with? I'm still left with an overwhelming anxiety about travel (because could not go far as needed to get home quickly - my husband was very destructive). And my courage, once so high, is a lot lower now. I have to have a cup of tea before I go to the supermarket even, and have got rid of the car.
Keith went to a nursing home in 2018 and died at the end of this July so in theory my journey with dementia is over. I feel I was in a horror story and cannot help but keep looking back. Thank you for raising this. Kindred.
So sorry for your loss, Kindred,
I don’t think it’s possible to come through unscathed! A chap I knew who’d looked after his wife with dementia for many years until she went into care home, ended up in a home himself, not because of dementia, but because he was so physically wrecked from all the years of pushing her around in a wheelchair, all the lifting etc. But of course there was no one to look after him!!