I need to let off steam

[Fotoliza]

My husband was diagnosed with Vascular Dementia 3 months ago. I am having real trouble coping with his lack of motivation and slowness. The worst thing is that althought I need help to do kitchen chores, etc, he cannot help without being micromanaged as well. I am exhausted having cooked a stirfry and mince for the next couple of days and hoped he would help wash up so we could have a feeling of achievement and an afternoon to do whatever we wish or can. Vas. Dem. doesn't work like that though and I seriously lost my temper and now feel bad about it.
It doesn't help that we have been married 52 years and not altogether happy and with my own health making me weaker and barely coping with this horrible diagnosis. I know he cannot help it, but I am beginning to lose control. 🥺
😢

 

[Izzy]

Welcome to the forum @Fotoliza.

I'm sorry to read about your situation. Do you have any help in caring for your husband? I wondered if a needs assessment and a carer's assesment had been done. Information about both of these assesments is in this link -

Assessment for care and support in England

What are care assessments and how can people with dementia and their carers access them? This information is for care and support in England.

www.alzheimers.org.uk

Would it help at all if your considred a prepared meals service? I'm really not familiar with them but I believe companies like Wiltshire Foods are useful. It might take some of the load off you.

You might also find this thread useful. I must confess I found it difficult to keep to but it makes interesting reading -

Compassionate Communication with the Memory Impaired

The following piece was posted a while ago on DSF and made a big impression on me. It is something I have referred to time after time and tried hard to follow. We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if...

forum.alzheimers.org.uk

 

[Kevinl]

Please feel free to vent all you like on here, always here to listen. K

 

[Fotoliza]

Please feel free to vent all you like on here, always here to listen. K

Thanks K.

 

[Kevinl]

More than welcome. K

 

[Fotoliza]

Welcome to the forum @Fotoliza.

I'm sorry to read about your situation. Do you have any help in caring for your husband? I wondered if a needs assessment and a carer's assesment had been done. Information about both of these assesments is in this link -

Assessment for care and support in England

What are care assessments and how can people with dementia and their carers access them? This information is for care and support in England.

www.alzheimers.org.uk

Would it help at all if your considred a prepared meals service? I'm really not familiar with them but I believe companies like Wiltshire Foods are useful. It might take some of the load off you.

You might also find this thread useful. I must confess I found it difficult to keep to but it makes interesting reading -

Compassionate Communication with the Memory Impaired

The following piece was posted a while ago on DSF and made a big impression on me. It is something I have referred to time after time and tried hard to follow. We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if...

forum.alzheimers.org.uk

Thank you so much for your helpful reply, @Izzy Yes, we have had various assessments. The SS have given me a carer's card and the GP is going to refer to social prescribing. I am qualifying for a free 18hr respite care for someone to take hybby for a walk or whatever for an hour each time and if it works the SS might allow me more.
I do have a lovely cleaner/home help from AgeUK twice a week and I don't know how I managed without her.
We also have a carer twice a week, but it is day to day thinks that are becoming more difficult.
I am going to have to get a new motion sensor hot tap in the bathroom as he keeps leaving it on in the night.
I do buy ready meals quite often and try to add my on extra fresh veg. I have been putting off Wiltshire as I don't want to feel I am giving up before I need to, but I am glad they are there if needed.
I think it is just sinking in how bad things are as they have been creeping up on us, but rather faster than expected.
Thanks again Izzy, E

 

[Kevinl]

Not waving but drowning, about summed it all up for me, when you need help ask. Don't wave like you're having fun, help like you need real help, no shame in that. K

 

[Ellie2018]

Thank you so much for your helpful reply, @Izzy Yes, we have had various assessments. The SS have given me a carer's card and the GP is going to refer to social prescribing. I am qualifying for a free 18hr respite care for someone to take hybby for a walk or whatever for an hour each time and if it works the SS might allow me more.
I do have a lovely cleaner/home help from AgeUK twice a week and I don't know how I managed without her.
We also have a carer twice a week, but it is day to day thinks that are becoming more difficult.
I am going to have to get a new motion sensor hot tap in the bathroom as he keeps leaving it on in the night.
I do buy ready meals quite often and try to add my on extra fresh veg. I have been putting off Wiltshire as I don't want to feel I am giving up before I need to, but I am glad they are there if needed.
I think it is just sinking in how bad things are as they have been creeping up on us, but rather faster than expected.
Thanks again Izzy, E

I’m sorry that we can’t give you real help but it might make you feel better to know that we all feel this way sometimes - me at some point every day and it’s been going on for years. My OH is just making a cup of tea - the only thing he does. I’ve had, where is your cup, this cup, do you want sugar, hot water in the tap (we don’t have a kettle), this milk, what do I do with milk I’ve not used, is this strong enough and it’s like hot milk. I get that for everything he does every day - these socks, this chair, can I have a grape! But I’m lucky in many ways, he’s very compliant, continent, feeds himself. You will see that we all have different things as every experience is different but we are here for you to vent to and many people can give you the benefit of their experience. Just a thought, OH does a dementia day centre 3 days a week and it really helps me, would that work.

 

[Fotoliza]

I’m sorry that we can’t give you real help but it might make you feel better to know that we all feel this way sometimes - me at some point every day and it’s been going on for years. My OH is just making a cup of tea - the only thing he does. I’ve had, where is your cup, this cup, do you want sugar, hot water in the tap (we don’t have a kettle), this milk, what do I do with milk I’ve not used, is this strong enough and it’s like hot milk. I get that for everything he does every day - these socks, this chair, can I have a grape! But I’m lucky in many ways, he’s very compliant, continent, feeds himself. You will see that we all have different things as every experience is different but we are here for you to vent to and many people can give you the benefit of their experience. Just a thought, OH does a dementia day centre 3 days a week and it really helps me, would that work.

Hi @Ellie2018 Yes, it is waring and OH often uses the wrong milk in my coffee which he makes far too strong, but I try not to complain because he has made the effort. OH doesn't usually ask, but carries on in his own sweet way which often needs checking.
He is using pull-ups which he doesn't always realise need changing. This morning he took both today's dosette statins and Sunday's as well. He'd opened Sunday morning's dosette meds as well, but fortunately hadn't taken the lot!! That is a new development. He can't be trusted.
I have to stop him drinking booze more than he should, having been warned by the Memory clinic and local dementia support worker that alcohol speeds up dementia times 3!
We are on a waiting list for some sort of activity for him during the day, but he won't get up until after noons which shortens the day.
Thanks for your reply.
Best wishes, E

 

[SherwoodSue]

Can’t care less is common with vascular dementia. Loving emphasis on the word can’t. The bit of the brain that initiated tasks around the home isn’t working, the bit of the brain that expressed emotion appropriately…. They can’t
Value you for all you do…. They can’t.
I found the apathy that is a dominant symptom of mums VD shocking at times.
Floored me and we have a good relationship
If all wasn’t well to begin with…

Thinking of you.
Keep posting.

 

[Fotoliza]

Can’t care less is common with vascular dementia. Loving emphasis on the word can’t. The bit of the brain that initiated tasks around the home isn’t working, the bit of the brain that expressed emotion appropriately…. They can’t
Value you for all you do…. They can’t.
I found the apathy that is a dominant symptom of mums VD shocking at times.
Floored me and we have a good relationship
If all wasn’t well to begin with…

Thinking of you.
Keep posting.

Hi @SherwoodSue. Thanks for sharing those thoughts. I know he can't help it, but he has always been nonchalant or apathetic for years, until I realised this were now more that the usual laid back OH.
He does appreciate me "for all I am doing" for him, so far anyway.
It is helpful to share and swap notes.
Look after yourself too. @SherwoodSue
Best wishes, E

 

[jennifer1967]

my husband has vas. dem as well diagnosed 4 years ago. he gets slower and slower walking or doing anything. he still washes up but its a big effort and the results are not always good. he doesnt always do it well. linking things together is a problem like dirty dish, needs washing. he does not much else as he has COPD as well as a bonus. he used to cook roasts etc but he cant get the timings right. is your husband depressed or low mood, this might lower his motivation. they just lose logic and sequencing. i have to manage my husband and sometimes its easier to do it myself.

 

[Fotoliza]

my husband has vas. dem as well diagnosed 4 years ago. he gets slower and slower walking or doing anything. he still washes up but its a big effort and the results are not always good. he doesnt always do it well. linking things together is a problem like dirty dish, needs washing. he does not much else as he has COPD as well as a bonus. he used to cook roasts etc but he cant get the timings right. is your husband depressed or low mood, this might lower his motivation. they just lose logic and sequencing. i have to manage my husband and sometimes its easier to do it myself.

Hi @jennifer1967 Your description of your OH could be describing mine apart from the COPD. "i have to manage my husband and sometimes its easier to do it myself". Absolutely the same here and he has become very slowmo. He used to cook as well, but even cremates cheese on toast now.
He has not been diagnosed with depression or low mood, but I have wondered. He reads a lot now, stays in his chair rather than being proactive, even on a project that meant a lot to him. I doubt he will ever finish building his replica steam car bought as a retirement project over 5yrs ago, unless someone can work with him.
He might add dirty dishes to the dishwasher while I am emptying clean items from it, or take out unwashed items from it and put them in the cupboard. As you say, it is maybe easier to do it oneself.

 

[jennifer1967]

Hi @jennifer1967 Your description of your OH could be describing mine apart from the COPD. "i have to manage my husband and sometimes its easier to do it myself". Absolutely the same here and he has become very slowmo. He used to cook as well, but even cremates cheese on toast now.
He has not been diagnosed with depression or low mood, but I have wondered. He reads a lot now, stays in his chair rather than being proactive, even on a project that meant a lot to him. I doubt he will ever finish building his replica steam car bought as a retirement project over 5yrs ago, unless someone can work with him.
He might add dirty dishes to the dishwasher while I am emptying clean items from it, or take out unwashed items from it and put them in the cupboard. As you say, it is maybe easier to do it oneself.

i have to explain where something is, i will ask for a brush, need to say what colour and precisely where it is, in kitchen by the bin. can you bring it here. like pulling teeth sometimes.

 

[SherwoodSue]

All this so familiar. Mum has COPD/ bronchiectasis too. Mum ‘could’ do more for herself but the drive has gone. When I go mid day, I empty the few things out of the dishwasher. Someone else puts it on late evening

Mum says I would have done that you know!

Not that I say it but I think

Well you’ve had all day ??

I would do so many things if it wasn’t for you …says mum

 

[SherwoodSue]

Before I clocked on to the extreme apathy we did wonder about depression

Meds didn’t affect mood/energy but they did alter mum’s sodium level and make her fall more.

Mostly mum is flat. The emotional lows aren’t there (even when dad died) the high moods aren’t there either. Often mask like and sits and turns the pages of books or papers, even in company.

I do miss my old mum 😥

 

[Fotoliza]

Before I clocked on to the extreme apathy we did wonder about depression

Meds didn’t affect mood/energy but they did alter mum’s sodium level and make her fall more.

Mostly mum is flat. The emotional lows aren’t there (even when dad died) the high moods aren’t there either. Often mask like and sits and turns the pages of books or papers, even in company.

I do miss my old mum 😥

Yes, Hubby reads a lot and I guess feels safe in his book in his chair because no decisions need to be made. If the TV is paused he will be distracted by the image instead of maybe making a coffee or leaving the room for whatever at the time.
If our grandson and daughter visit he is slow to leave his seat to wave them goodbye, even when they are waiting in the hallway for the routine hug. His realisation is very slow.
It is very hard to see someone change into a different person, yet appear the same.

 

[Fotoliza]

i have to explain where something is, i will ask for a brush, need to say what colour and precisely where it is, in kitchen by the bin. can you bring it here. like pulling teeth sometimes.

I do understand the frustration.

 

[AutumnRigby]

All this so familiar. Mum has COPD/ bronchiectasis too. Mum ‘could’ do more for herself but the drive has gone. When I go mid day, I empty the few things out of the dishwasher. Someone else puts it on late evening

Mum says I would have done that you know!

Not that I say it but I think

Well you’ve had all day ??

I would do so many things if it wasn’t for you …says mum

Hi SherwoodSue

My mum is exactly the same, whenever I do some thing around the house, such as cleaning the dogs nose marks off the windows mum will always say I could have done that.

Sometimes I have to hold myself back from saying but you're far. too busy sitting on the same chair all day every day 😁

 

[tonebear]

Not waving but drowning, about summed it all up for me, when you need help ask. Don't wave like you're having fun, help like you need real help, no shame in that. K

I've been waving and smiling like an idiot for two or three years now and have really just come to the come to the conclusion that i'm actually drowning. Keep waving someone may notice and want to join in. I'm asking various peeps, maybe something will happen ( might win the lottery)