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

[Thethirdmrsc]

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]

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]

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]

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]

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]

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]

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.

 

[Agzy]

Oh, Sylvia @Grannie G , your penultimate paragraph is so wonderfully helpful and indeed quotable. Thank you for understanding x

 

[Lin47]

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]

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]

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]

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]

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]

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.

 

[DebbyR]

I have always LOVED Christmas, acting like a little kid on Christmas morning. I loved the decorating, shopping, wrapping and in general just getting all ready for the big day. This year changed all that. Last year a little, but this year in a big way. I now HATE Christmas. All those questions that I hear a million times a day are now exaggerated with more questions about gifts, travel, etc. Although I have boards all around him updating him on the fact that shopping is done, gifts are wrapped and right in front of him, when we are traveling, what we have bought for his kids, etc., he still ASKS all day long! It is so beyond frustrating! Add to that the fact that he can no longer do for himself but thinks he can. That strong, take charge person I loved for 40 years is gone ... just gone and it breaks my heart every day. He still looks the same, thought a little older of course, but he is nothing like the man I had loved for all those years. I want to cry ... then I want to rant and rave because I am about to lose my mind with all the questions! I cherish those short times when I can run out to the store to pick up some quick groceries because it is finally quiet for a few minutes. So, how am I doing? Not well. Not well at all. I am not the same person anymore either. I am not patient. I am angry all the time! At who? I don't know who to be mad at but I am mad just the same. This is not what I wanted out of retirement. This is a living hell ... one I live every day. He is in his own hell I suppose, although outwardly, he seems just fine and tells me all the time that I do nothing for him and he doesn't understand why I am so tired. He is convinced that he could take care of himself just fine. Meanwhile, he has no idea who his doctors are, what ailments he has, what pills to take or a million other things I do for him. I'm not looking for praise, just appreciation, but that will never come. Maybe that has something to do with my anger...

 

[kindred]

I have always LOVED Christmas, acting like a little kid on Christmas morning. I loved the decorating, shopping, wrapping and in general just getting all ready for the big day. This year changed all that. Last year a little, but this year in a big way. I now HATE Christmas. All those questions that I hear a million times a day are now exaggerated with more questions about gifts, travel, etc. Although I have boards all around him updating him on the fact that shopping is done, gifts are wrapped and right in front of him, when we are traveling, what we have bought for his kids, etc., he still ASKS all day long! It is so beyond frustrating! Add to that the fact that he can no longer do for himself but thinks he can. That strong, take charge person I loved for 40 years is gone ... just gone and it breaks my heart every day. He still looks the same, thought a little older of course, but he is nothing like the man I had loved for all those years. I want to cry ... then I want to rant and rave because I am about to lose my mind with all the questions! I cherish those short times when I can run out to the store to pick up some quick groceries because it is finally quiet for a few minutes. So, how am I doing? Not well. Not well at all. I am not the same person anymore either. I am not patient. I am angry all the time! At who? I don't know who to be mad at but I am mad just the same. This is not what I wanted out of retirement. This is a living hell ... one I live every day. He is in his own hell I suppose, although outwardly, he seems just fine and tells me all the time that I do nothing for him and he doesn't understand why I am so tired. He is convinced that he could take care of himself just fine. Meanwhile, he has no idea who his doctors are, what ailments he has, what pills to take or a million other things I do for him. I'm not looking for praise, just appreciation, but that will never come. Maybe that has something to do with my anger...

Welcome to our lovely forum. All sympathy, it is a living hell. I used to write I must endure 100 times each day to force myself through it. You are not alone. Once, when I had to get paramedics out to help me get my OH off the floor, they said to me that this was the fifth call for the same thing they had had that night, in my small area. Then they said, why don’t you go for residential care? Eventually i was forced into that and that’s another story, but it was like your life up to that point.
Please listen to yourself, if it has really reached hell point for you, then please consider help, support and possibly residential care. There is no point letting dementia take you down too.
Warmest, Kindred

 

[jennifer1967]

where do i start. his memory is worse, my privacy very limited as hes got to know whose calling whose texting and why. then assumes we are going to bed, turn the tv off without considering my wishes. with my own health problems, physically and mentally, i struggle on with limited support. im always considering his needs before mine and when im in pain, it feels endless but im now being referred for support,befriending and CBT as apparently have moderate to severe depression as well. because im only 53 and my husband is 72 i do feel life is passing me by but i knew at the beginning when i was 21 that this is the likely outcome. the worse part is im losing him and that is the worst of it. can deal with other problems but emotions are the worst to deal with for me.

 

[nae sporran]

We're about the same age @jennifer1967 and my partner is a little over 80, so I can sympathise with your feelings. CBT helped a bit last summer, so good luck and I hope it helps you.

 

[jennifer1967]

We're about the same age @jennifer1967 and my partner is a little over 80, so I can sympathise with your feelings. CBT helped a bit last summer, so good luck and I hope it helps you.

apparently its for the pain. ive had CAT and DBT so try anything. referred to persistent pain team which makes me smile. we were married when i was 22, almost 32yrs ago and we did have the discussion then so went in with my eyes wide open. i didnt expect my own illnesses to come along to add to it and not being able to go out.

 

[One Moment At A Time]

I have always LOVED Christmas, acting like a little kid on Christmas morning. I loved the decorating, shopping, wrapping and in general just getting all ready for the big day. This year changed all that. Last year a little, but this year in a big way. I now HATE Christmas. All those questions that I hear a million times a day are now exaggerated with more questions about gifts, travel, etc. Although I have boards all around him updating him on the fact that shopping is done, gifts are wrapped and right in front of him, when we are traveling, what we have bought for his kids, etc., he still ASKS all day long! It is so beyond frustrating! Add to that the fact that he can no longer do for himself but thinks he can. That strong, take charge person I loved for 40 years is gone ... just gone and it breaks my heart every day. He still looks the same, thought a little older of course, but he is nothing like the man I had loved for all those years. I want to cry ... then I want to rant and rave because I am about to lose my mind with all the questions! I cherish those short times when I can run out to the store to pick up some quick groceries because it is finally quiet for a few minutes. So, how am I doing? Not well. Not well at all. I am not the same person anymore either. I am not patient. I am angry all the time! At who? I don't know who to be mad at but I am mad just the same. This is not what I wanted out of retirement. This is a living hell ... one I live every day. He is in his own hell I suppose, although outwardly, he seems just fine and tells me all the time that I do nothing for him and he doesn't understand why I am so tired. He is convinced that he could take care of himself just fine. Meanwhile, he has no idea who his doctors are, what ailments he has, what pills to take or a million other things I do for him. I'm not looking for praise, just appreciation, but that will never come. Maybe that has something to do with my anger...

I have always LOVED Christmas, acting like a little kid on Christmas morning. I loved the decorating, shopping, wrapping and in general just getting all ready for the big day. This year changed all that. Last year a little, but this year in a big way. I now HATE Christmas. All those questions that I hear a million times a day are now exaggerated with more questions about gifts, travel, etc. Although I have boards all around him updating him on the fact that shopping is done, gifts are wrapped and right in front of him, when we are traveling, what we have bought for his kids, etc., he still ASKS all day long! It is so beyond frustrating! Add to that the fact that he can no longer do for himself but thinks he can. That strong, take charge person I loved for 40 years is gone ... just gone and it breaks my heart every day. He still looks the same, thought a little older of course, but he is nothing like the man I had loved for all those years. I want to cry ... then I want to rant and rave because I am about to lose my mind with all the questions! I cherish those short times when I can run out to the store to pick up some quick groceries because it is finally quiet for a few minutes. So, how am I doing? Not well. Not well at all. I am not the same person anymore either. I am not patient. I am angry all the time! At who? I don't know who to be mad at but I am mad just the same. This is not what I wanted out of retirement. This is a living hell ... one I live every day. He is in his own hell I suppose, although outwardly, he seems just fine and tells me all the time that I do nothing for him and he doesn't understand why I am so tired. He is convinced that he could take care of himself just fine. Meanwhile, he has no idea who his doctors are, what ailments he has, what pills to take or a million other things I do for him. I'm not looking for praise, just appreciation, but that will never come. Maybe that has something to do with my anger...

Respectful greetings to you from the Caribbeans, to start -- honestly thank you.

As I continue reading your posting, you're discribing me.

I'm 60 yrs. old by the Grace / Mercy & Love of a Higher Power. I been married for over 37 yrs., my dear wife and I have two adult children and two Treaures (two grandsons 10 & 12). I'm a cancer survivor and an ex-problem drinker, thanks to my Higher Power & Dr. Bob & Bill W. friends worldwide, Lord Alcohol no longer has me "shackled" inside a bottle.

Yes! My memory is not "good looking", mood swing is common in my daily live and that of my loved ones.

When I fall I just get up with His help and my family's --> "Baby steps / Easy does It / One moment at a time & ** The Serenity Orayer.

I try practicing on a daily basis to have an attitude of Praise to the Higher Power of my understanding because His by my side 24/7.

One moment at a time.

Happy New Year -- Feliz Año Nuevo

Y

Buenas noches mi gente Linda

"Baby steps"