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

Scrimjay

Registered User
Mar 31, 2019
24
Do you know no one has ever asked how I am doing, so thank you Sophie, this is the problem, we feel so isolated, its like being in a bubble cut off from the real world, constantly grieving from the time of husbands diagnosis four years ago, I was 58 he was 60 although signs were there much earlier, you grieve for your old life, and accepting this new one is tough, solely we make every decision & take on the responsibility of everything, acceptance is the hardest thing, everyday I am learning on the job, its life, but not one that you ever imagined!
Dear Mustang,

I think in someways "having to do everything" is actually harder than the physical caring. It's no longer an equal partnership & it's difficult to come to terms with the fact that if you don't arrange appointments, sort out workmen for repairs, chop sticks for the fire, get the car to the garage, etc etc, no one else will! I treasure the first 2 or 3 hours in the morning, when I can still go out, or do something around the house, leaving my husband in bed, as he doesn't get up until nearly lunchtime! (in fact, he would probably sleep the majority of the day, if i didn't wake him up)!
 

marionq

Registered User
Apr 24, 2013
6,155
Scotland
@Wifenotcarer you explain so eloquently that I doubt dementia is the cause. You have had a lot of issues to deal with and now the worry of your sister. We will all wish for the best for you and please keep
Posting and let us know how you do.
 

northerngirl

Registered User
Aug 10, 2018
11
You only need to post 10 times before you can post links @northerngirl and @Bella Cleo. Otherwise you can post as often or as infrequesntly as you want to or need to.
If you click on the "contact us" box next to the "log out" box admin will explain the full reasons, but we do get a few spammers trying to sell products or services and I think that is reason behind it.
Thank you nae sporran for the explanation. Must say, this forum is of great help, having a partner with Alzheimers, with some good advice from others in the same situation. Godbless you all going through the stress and exhaustion of watching and being Carer to your loved one, and the times when it gets so hard you question the fact ‘do I really love this person who is causing me so much grief and pain
 

Lawson58

Registered User
Aug 1, 2014
2,164
Victoria, Australia
I feel for you @Lawson58 as I fellow globe trotter I am similarly hobbled. My partner is not a high functioning sufferer though and there will come a time when he has to go into a care home so I wait for that time when I can travel again. Can you get a week or two of respite to get away?
I was away for a couple of nights just over a year ago and found that I just didn't want to come home. My granddaughter stayed over at night which was lovely of her. Being high functioning my husband would simply refuse to go into respite and frankly I wouldn't blame him for that at all. It's not having something to look forward to that is the issue for me. I create projects for myself to keep busy but it's not quite the same. OH was a globetrotter too but no longer has any interest.
 

Gfeb

New member
Jul 14, 2019
5
How am I? Some days I’m OK and feel like I can cope with anything, some days I’m a tearful, hopeless mess who feels defeated by the slightest problem. Sometimes I can be both in the same day, depending on whether there’s been an incident with pwd or not.

I had CBT for anxiety & depression a couple of years ago and I keep having to remind myself to put it into practice. It usually works for me, to some extent.

I also have to remind myself that the pwd is suffering far more than I am, and for them there’s no respite or escape.
What you have written is me.My husband has Lewy Body and it's a real roller coaster.Things vary from day to day hour to hour.I am learning that I am better at dealing with things when I have a good night's sleep.I am waiting to start c CBT course but they keep delaying the start date.
When I get angry and frustrated with my husband I feel really bad I am realising that I can't fix him I have to accept the New normal or I will go crazy.
 

White Rose

Registered User
Nov 4, 2018
679
I was away for a couple of nights just over a year ago and found that I just didn't want to come home. My granddaughter stayed over at night which was lovely of her. Being high functioning my husband would simply refuse to go into respite and frankly I wouldn't blame him for that at all. It's not having something to look forward to that is the issue for me. I create projects for myself to keep busy but it's not quite the same. OH was a globetrotter too but no longer has any interest.
My partner is the opposite re travel, he'd love to go places still but he has no short term memory now so wouldn't remember anything if we did go away and would be just too stressful for me. It's no life is it, not for the PWD and not for their carers.
 

Lawson58

Registered User
Aug 1, 2014
2,164
Victoria, Australia
My partner is the opposite re travel, he'd love to go places still but he has no short term memory now so wouldn't remember anything if we did go away and would be just too stressful for me. It's no life is it, not for the PWD and not for their carers.
My husband's cardiac health is poor and he can no longer consider long flights and needing frequent blood testing, he has turned to playing bridge. He occasionally gets away for a weekend for a bridge congress so in some way, that probably satisfies his needs.
 

Mustang66

Registered User
Nov 27, 2019
55
Dear Mustang,

I think in someways "having to do everything" is actually harder than the physical caring. It's no longer an equal partnership & it's difficult to come to terms with the fact that if you don't arrange appointments, sort out workmen for repairs, chop sticks for the fire, get the car to the garage, etc etc, no one else will! I treasure the first 2 or 3 hours in the morning, when I can still go out, or do something around the house, leaving my husband in bed, as he doesn't get up until nearly lunchtime! (in fact, he would probably sleep the majority of the day, if i didn't wake him up)!
So true, even have my own drill & tool box!
 

DaveW

New member
Dec 30, 2019
1
Thank you so much for asking this question!

Some days I feel OK and I can cope and on others I just feel anxious and depressed and that my life has gradually come to a shuddering halt.

Mum has had dementia since 2014. I am only child so I am her sole carer. I work full time (which keeps my sanity!) and so Mum goes to day care and has home care twice a day to enable me to continue working, which I'm thankful for, although I have to be on call all day in case of a problem (this week, OK so far; last week there were calls every day). I look after Mum every evening and every weekend so I rarely get to go out now. It feels like all I do is my paid job and then look after Mum. I hear people talk at work about things that they plan to do at the weekend, movies or TV shows they have watched, evenings out or holidays that they have booked and I feel like they live in a completely different universe to me.

Recently things have started getting harder as Mum's wandering has got worse and she is becoming incontinent more regularly which means the duration of the home care will be increasing as soon as the care agency can sort the rotas out. I've always resisted asking carers to take on domestic chores but it's becoming too much to do a full time job, and do all the washing/drying/ironing/cleaning/cooking/paperwork/medication etc and tend to Mum's emotional needs too. I'm worn out at the end of the day!

Since Christmas it's become apparent that Mum is struggling with organizing getting dressed in the morning, so she needs prompting and guidance. She's also becoming more belligerent and saying a number of hurtful things (as she did this evening) I 'keep on keeping on' because I love my Mum but I do miss having things to look forward to.
 

nae sporran

Volunteer Host
Oct 29, 2014
7,099
Bristol
Welcome to the forum @DaveW. You will find support here, we are all struggling with similar frustrations and exhaustion and know how you feel about the isolation and the stress. Keep posting and reading when you find time and energy.
 

White Rose

Registered User
Nov 4, 2018
679
Thank you so much for asking this question!

Some days I feel OK and I can cope and on others I just feel anxious and depressed and that my life has gradually come to a shuddering halt.

Mum has had dementia since 2014. I am only child so I am her sole carer. I work full time (which keeps my sanity!) and so Mum goes to day care and has home care twice a day to enable me to continue working, which I'm thankful for, although I have to be on call all day in case of a problem (this week, OK so far; last week there were calls every day). I look after Mum every evening and every weekend so I rarely get to go out now. It feels like all I do is my paid job and then look after Mum. I hear people talk at work about things that they plan to do at the weekend, movies or TV shows they have watched, evenings out or holidays that they have booked and I feel like they live in a completely different universe to me.

Recently things have started getting harder as Mum's wandering has got worse and she is becoming incontinent more regularly which means the duration of the home care will be increasing as soon as the care agency can sort the rotas out. I've always resisted asking carers to take on domestic chores but it's becoming too much to do a full time job, and do all the washing/drying/ironing/cleaning/cooking/paperwork/medication etc and tend to Mum's emotional needs too. I'm worn out at the end of the day!

Since Christmas it's become apparent that Mum is struggling with organizing getting dressed in the morning, so she needs prompting and guidance. She's also becoming more belligerent and saying a number of hurtful things (as she did this evening) I 'keep on keeping on' because I love my Mum but I do miss having things to look forward to.
@DaveW, what a lovely son you are but it's too much for one person, working full time, looking after your mum all the housework and everything else. I've recently started working part-time again (for my sanity) and think I can just about manage it but it's not easy co-ordinating all the care my partner requires and all the household stuff. It does need tremendous organisation - even just making sure all his washing is done in case of 'accidents' which have been happening lately. Perhaps a cleaner might be a help - I used to find having one just 3 hours a week made a difference.
 

Lawson58

Registered User
Aug 1, 2014
2,164
Victoria, Australia
I am not sure how to write this post. So much of what has been written revolves around ultimately about the effects of caring, the constant appointments, the maintenance of the household, paying the bills, the straw that breaks the camel's back, the frustration of always having yet another thing to do.

I often read that a PWD is complaining of sore feet, aches and pains, tummy troubles, constipation, diarrhoeas and so much of it is put down to the dementia.

I think I just need to say that sometimes all these things may be a part of dementia but often they are not.
Maybe they are just a part of getting old. I have glaucoma and cataracts, my feet hurt and my knees hurt, and sometimes I have urge incontinence. Occasionally, I have some bowel trouble and the other day, I had a real mental block in that I could not remember my home phone number. I loathe growing old, I hate looking at myself In the mirror, so much so like the complaints of a person with Ad.

I am part of a trial and she tells me that I I am dounh doing vwry well.
 
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Mothers daughter

Registered User
Feb 4, 2020
16
I have just registered to this website and been browsing around when I came across this thread.
What a good idea!
My Mum is in a care home after several hospital visits and has just been diagnosed with epilepsy after having 2 seizures. She had epilepsy when she was younger and now has Vascular Dementia. There seems to be some link of epilepsy to Alzheimer's and Vascular Dementia - so I am now thinking of all the times that Mum said she felt dizzy or light headed, or had falls - and wondering if these were also linked.
Everyone asks me how Mum is.
Never have I been asked how I am.
How am I?
I'm exhausted with worry
I worry constantly about my Mum.
Am I going to get another call to say 999 has been called?
Do I do enough for her?
Did I miss something?
Does she still know who my brother is when he visits?
Is she happy?
Is she lonely?
Has she got enough clothes or books?
Can I take her to see her sister?
How will she be when I visit today?
Will she recognize her friends when they visit her?

But mostly I am sad - I miss her
 

nae sporran

Volunteer Host
Oct 29, 2014
7,099
Bristol
Welcome to the forums @Mothers daughter . So many worries for you, but you are not alone now you have found us. My partner has vascular dementia and while she has never been diagnosed with epilepsy the hospital put her on epilepsy meds after a seizure which made her dementia much more serious.

You are bound to be sad, when the person you care about is here, but no longer the person you can talk to. Look after yourself and keep in touch.
 

Moggymad

Registered User
May 12, 2017
500
Hi everyone, and welcome to our wellbeing discussion
We wanted to check in with all our members and ask the all-important question, how are you?
Many years ago I used to be a home help & one of the homes I visited was an elderly couple where the husband cared for his wife. Everytime i visited I asked him that question. Without fail his reply was always about how his wife was. Being young it puzzled me.
Fast forward 20+ years & I understand now why he couldn't answer about himself. How he was was completely dependant on how his wife was, like he did not have an identity of his own. He probably felt uncomfortable being asked about himself when his whole focus was on his wife.
Years later I found when someone asked that question of me whilst I was a carer for mum, it was far easier to say how things were with mum than open up about myself. Now I am no longer a carer as mum died 3 months ago having been in care just over 2 years.
Despite accepting that mum has reached the end of her life I am still adjusting mentally but doing ok I think. When the husbands wife died I saw how devastated he was. I foolishly thought despite his grief he would feel some relief from what seemed like the shackles of caring. Another realisation then to my younger self was how much of yourself is lost in caring & how much I still had to learn about it all. Now older & a bit wiser.
 

Mydarlingdaughter

Registered User
Oct 25, 2019
134
North East England UK
Mum had a heart attack in 2010 and the dementia started to creep in after that. She also has severe osteoporosis and it was that which resulted in more of her hospital admissions.
I was asked to accompany her to a GP appointment because the GP felt she would not understand or retain the information. Because of that, the GP allowed me access to some of the information and discuss things with me on the phone. Because they had seen me with her at an appointment.
Unfortunately I could not do as much as I felt I should, because I could not cope. :(
Now after a long long story, probably a very boring one, Mum is in a care home. We are on the way to getting her finances sorted out. Due to being clear about Boundaries:p, all I am doing at the moment is visiting Mum once a fortnight, making sure she has enough supplies.
I also found it helpful to writ things down. I use a diary and also a reminder app on my phone. I have a list called Reminder Mum Help. I worry about Mum a lot. But now her immediate welfare is sorted, I worry about spin offs.
I dont talk to many people about it, because they all seem to want to give unsolicited advice, which makes me feel worse. And some make it clear they don't want to know.
 

White Rose

Registered User
Nov 4, 2018
679
Many years ago I used to be a home help & one of the homes I visited was an elderly couple where the husband cared for his wife. Everytime i visited I asked him that question. Without fail his reply was always about how his wife was. Being young it puzzled me.
Fast forward 20+ years & I understand now why he couldn't answer about himself. How he was was completely dependant on how his wife was, like he did not have an identity of his own. He probably felt uncomfortable being asked about himself when his whole focus was on his wife.
Years later I found when someone asked that question of me whilst I was a carer for mum, it was far easier to say how things were with mum than open up about myself. Now I am no longer a carer as mum died 3 months ago having been in care just over 2 years.
Despite accepting that mum has reached the end of her life I am still adjusting mentally but doing ok I think. When the husbands wife died I saw how devastated he was. I foolishly thought despite his grief he would feel some relief from what seemed like the shackles of caring. Another realisation then to my younger self was how much of yourself is lost in caring & how much I still had to learn about it all. Now older & a bit wiser.
I met someone yesterday who's father was completely lost because he had cared for his wife who had dementia with total and absolute dedication until she died a few weeks ago. His life was caring for his wife, now she's gone he doesn't know what to do with himself. I don't feel like that about caring for my partner, terrible to say but I want it to end, I want my life back. He's not deteriorated enough to go into a care home and he's healthy in body so I don't know how long this will go on and I know I'll hate myself when I do put him into a care home. Unlike some people I'm lucky that I can have carers to help out but today is a down day. I'm way off retirement age and feel like I'm wasting my life but it's terrible to think like that as it's not going to be forever and I wish I could accept that this is my life for now and be happy to be his carer like that old man who cared so lovingly for his wife!
 

Vitesse

Registered User
Oct 26, 2016
219
I have been through all sorts of emotions during the past 2 years. My husband is 20 years older than me and we have had a lovely time over the past 40 years. I started off in this dementia journey full of confidence I could cope, but I had no idea what was ahead of me. As I’ve said before on TP, he won’t go to a Day centre, refused a PA to take him out, and wants me to be with him all the time. His speech has deteriorated so much, that I have no idea what he’s saying most of the time, he can’t hear much, so conversation is non existent. I had reached a point where suicide was a real option, and fortunately the medics stepped in and helped. I still do everything , but know the mental health team are there if I need them. In 2019 I just hoped everyday that it might be his last.
Now I have decided that the time is limited, as he approaches 90, and I will do all I can to care for him at home unless it gets a lot worse than this. It is boring, we go nowhere, I have no conversation except dementia, but there is a future and I will do some of the things on my bucket list sometime.
It makes me feel better to think this way as I feel I am now in control of my own feelings.
 

White Rose

Registered User
Nov 4, 2018
679
I have been through all sorts of emotions during the past 2 years. My husband is 20 years older than me and we have had a lovely time over the past 40 years. I started off in this dementia journey full of confidence I could cope, but I had no idea what was ahead of me. As I’ve said before on TP, he won’t go to a Day centre, refused a PA to take him out, and wants me to be with him all the time. His speech has deteriorated so much, that I have no idea what he’s saying most of the time, he can’t hear much, so conversation is non existent. I had reached a point where suicide was a real option, and fortunately the medics stepped in and helped. I still do everything , but know the mental health team are there if I need them. In 2019 I just hoped everyday that it might be his last.
Now I have decided that the time is limited, as he approaches 90, and I will do all I can to care for him at home unless it gets a lot worse than this. It is boring, we go nowhere, I have no conversation except dementia, but there is a future and I will do some of the things on my bucket list sometime.
It makes me feel better to think this way as I feel I am now in control of my own feelings.
Ahhhhggg my partner has 14 years till he's 90, wouldn't surprise me if he lives that long, he's ridiculously healthy apart from the Alzheimer's! Cling on to your bucket list dreams @Vitesse, you'll get there.