• All threads and posts regarding Coronavirus COVID-19 can now be found in our new area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

Wellbeing discussion - checking in with each other and sharing practical advice

Thethirdmrsc

Registered User
Apr 4, 2018
171
I am 60, and himself is 80, and I don’t want to think of him getting to 90. What a laugh we had today, now that I am the only driver for our wee Motorhome, he says he can do the driving with me, and once we are on the road no one will know that he has no license. Oh how I laughed.
 

Mydarlingdaughter

Registered User
Oct 25, 2019
119
North East England UK
One of the turning points for me when I realised mum could outlive me.
The fact that she refused every practical help and suggestion unless I personally did it. And did it her way, the hard way. For example Utility bills were not allowed to be paid by direct debit. I started to feel angry.
Mum ended up in a care home after being in hospital and social workers arranged it.
It’s not wrong to reach out to others for help. The GP and social services first. The GP can refer to older persons team (code phrase for dementia).
 

Maggie

Registered User
I am "getting through the days" but not really OK. How do others cope when caring for someone at mid-stages who is verbally abusive, sarcastic, can say some very hurtful things, is unaware of how much he cannot do (and that I just get on with) has a very odd view of reality and reasoning, wants everyone to laugh at his "jokes" but they don't make sense to me, etc?
Who am I? is a question that keeps coming up in my mind, along with "what is my purpose in life" (other than being the best carer that I can to the person that I promised to care for "In sickness and in health"?
Previously I've known who I am, what I want to achieve, what my goals are, but now it is just a black hole.
it’s easy for me to say now “ Don’t take it personal“
The Disease is taking away the Social barriers of Cognitive insight into having Empathy for you in not having Conscious awareness of the impact of your husband Unacceptable
Behavior in taking all his Frustration and anger out on you.
Iam taking with Hindsight Now 😊.

I ended walking out of the house when my mother would do that to me.
I had to go for walk .
I felt like never coming back .
When I got back mum was having an Anxiety attack in worrying I had left her for good .



she never said sorry, but she was in such a state of worry that I ended up feeling sorry for walking out.
Catch 22
I cared for my mother 24/7.

I k is the Relationship is different mother and daughter and husband and wife.

I learnt I needed time out away from her or my mental wellbeing was going to became so negative I would not of being able to look after her .

I would have 2 weeks or week respite few times a year .
I had to be Emotionally strong emotionally intelligent.
Just tell my mother .
To keep looking after her I needed the help.
It was not her it was me .

I took the YOU out of it and put it down to it’s “ ME”
I learnt that from a NHS course I went to about
“ Looking after me “
Selfish pig guide to catering is a good book to read .




Do you get any time out for yourself ?
just being with yourself doing some Leisure Lifestyle activity that you enjoy your own company ?
what’s your Hobbies ?

Wishing you all the best .
 

Wild Flower

Registered User
Aug 18, 2015
7
Hi everyone, and welcome to our wellbeing discussion!

Whether you have dementia, or you care for a loved one with dementia, wellbeing and mental health are just as important as physical health.

We wanted to check in with all our members and ask the all-important question, how are you?

This discussion is a chance for you share how you feel, ask and answer questions about wellbeing, and share practical advice with other community members. This way you can share your emotions and advice with others who understand and have lived experience to share.
My father has had memory problems for many years now and my Mum is his carer, they are both in their 80's, Dad late 80's. Its so sad to see them both ill and although I go and see them as often as I can ,I don't live near them, its so hard leaving them. My Dad has been in hospital with an infection and has now been discharged home as my Mum wants him home and keeps saying to me she doesn't want him to go into a CH. I worry alot about her and she has now agreed to have carers coming in 4 times a day. I have had so many battles with her to get help and think about a local care homes. Although she appreciates my help when I do visit, I give her a rest with cooking, cleaning and sorting out things in the house. I just feel very sad, guilty and sometimes angry with this awfull disease seeing my parents struggling. We have now got a Social advisor but as Dad was admitted to hospital she wasn't able to help with my Dad's discharge as hospital have their own social workers. Dad has lost his mobility and is now sleeping downstairs in a very small bed, the OT that visited suggested that we could get a hospital bed for him, but now the social advisor is now saying we won't get one. I am just so frustrated that one person says one thing and then another says something different. I am lucky that I have brothers and a sister, so we do take it in turns to visit, but none of us live near them.
 

worriedson77

Registered User
Jan 29, 2020
51
I think on here the best advice I have seen and received is to try and make yourself more of a priority, ultimately as carers for pwd the strain and emotional turmoil is huge and having just been the the gp they can at least signpost people and places to help and make sure that you are in good health too. We bear the brunt of the condition and in all honesty this is bad enough but in particular losing a point of guidance/support and a confidante means that we have also lost a big part of our emotional support as well, it feels like losing out at least twice and it's hard to admit because ultimately it's all quite hopeless.
 

Agzy

Registered User
Nov 16, 2016
1,382
Moreton, Wirral. UK.
Wellbeing! The word/condition that swirls around me all the time. After 4 years of coping very well indeed and continuing, in an amended way to, to continue my life of caravan travels quite happily, the world changed dramatically via a UTI.
It has put her in hospital, worsened her condition, turned me into an emotional and guilt ridden wreck of the man I was 34 weeks ago.
On one side her sons already planning how mum can come back home with me doing the caring with some help from professionals, and my children insisting she goes into a care home FOR MY SAKE!
60% of me screams for what my kids say I “should do” while the rest of me cries out telling me what I “ ought to do” for her.
Within 2 years of my 80th birthday I am more than capable physically to to do either, but emotionally only one. I just feel so isolated and alone midst alll the mayhem.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,366
Kent
Hello @Agzy

Yours is the dilemma so many of us have faced. Unfortunately, we don`t seem able to learn from the experiences of others because our emotions are too fragile at this distressing time.

If you could sit back and see your situation in another, what might you suggest?

There is a general rule of thumb which is to try not to wait for a crisis situation. It`s best to have some permanent care in hand just in case that crisis arises.

You are recognising the changes in you, not just in what you are now unable to do to get a break but also how your physical and emotional well being is affected.

If the time hasn`t already come for residential care, you are fast approaching it.

All I can say is my personal experience of residential care is not the trauma I thought it would be. It was sharing the caring with a group of people who were dedicated and professional. They gave me time to breathe. They gave me space. They allowed me to return to being more of a wife than a carer.

My husband did not suffer in any way. I know, because I was there.
 

Lin47

Registered User
Apr 14, 2020
11
My mother was diagnosed a year ago with vascular Dementia. We have always lived in the same house. I have no relatives living in this area so it's just the two of us. I have a full time job so she is home alone a lot. She has memory problems and gets lonely. We have never had a good relationship as she never really wanted children. I feel that we got the diagnosis and that was that. You just have to get on with it as I don't feel that there is a lot of help out there. I sometimes feel that because she has me that people think she doesn't need help. Like others here have said things can be very up and down and I do feel resentful at times because I am looking after someone who never liked me and and has always made it clear that children were just to be put up with. I am not happy but then who is? Sorry I will stop complaining now I know all of us have problems and life is not easy for any of us.
Keep safe.
 

Greyone

Registered User
Sep 11, 2013
393
UK
As your working, you'll probably need neighbourly, free or paid for help ar some point. If she does not have a wandering yet, you may be lucky for a while. Are you always able to do all of her meals for her and make sure she has them and in the warm weather coming remain hydrated. If you are ok now then at least you have time to set up meals and a mid-afternoon safe and well check for when they are really needed.

Can your mother's doctor point you towards any local support services? If not try to see if Alzheimer's or Age UK have a local contact you could phone.
 

nae sporran

Volunteer Host
Oct 29, 2014
6,938
Bristol
Welcome to the forum. Lin47. Sorry you are feel so isolated and down looking after your mum. Having had a rocky relationship with my I can empathise with you, though it is my partner I look after.
Have you spoken to your local authority social services to see if they can help somewhere, whether it is meals or personal care? https://www.alzheimers.org.uk/dementiaconnect is a new resource from the Alzheimer's Society where you can find support. Phone numbers and contact details are on the site.
 

Lin47

Registered User
Apr 14, 2020
11
As your working, you'll probably need neighbourly, free or paid for help ar some point. If she does not have a wandering yet, you may be lucky for a while. Are you always able to do all of her meals for her and make sure she has them and in the warm weather coming remain hydrated. If you are ok now then at least you have time to set up meals and a mid-afternoon safe and well check for when they are really needed.

Can your mother's doctor point you towards any local support services? If not try to see if Alzheimer's or Age UK have a local contact you could phone.
Thank you greyone. At the moment she is able to cook for herself. She has always been very independent. For a 94 year old she is quite fit. I think it is early days yet as her only real problem at the moment is her memory. We finally got a link worker just before lock down and she is wonderful but I don't really think we are going to get anywhere until lock down is over.
 

Lin47

Registered User
Apr 14, 2020
11
Welcome to the forum. Lin47. Sorry you are feel so isolated and down looking after your mum. Having had a rocky relationship with my I can empathise with you, though it is my partner I look after.
Have you spoken to your local authority social services to see if they can help somewhere, whether it is meals or personal care is a new resource from the Alzheimer's Society where you can find support. Phone numbers and contact details are on the site.
We were given a care manager soon after diagnosis and were given three choices home carer/daycare or respite care. She was in respite twice last year and we were just looking into daycare when lock down started. We won't get a home carer anyway as they are in short supply round here.
 

nae sporran

Volunteer Host
Oct 29, 2014
6,938
Bristol
We were given a care manager soon after diagnosis and were given three choices home carer/daycare or respite care. She was in respite twice last year and we were just looking into daycare when lock down started. We won't get a home carer anyway as they are in short supply round here.

Sorry Lin47, that is pretty bad. Have you tried the dementia connect helpline to see if they can offer anything.