• 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.

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

SophieD

Administrator
Staff member
Mar 21, 2018
1,752
London
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.
 

nae sporran

Volunteer Host
Oct 29, 2014
6,367
Bristol
Watching my partner struggle with simple things and get so down is hard to watch. I get frustrated with her, then feel guilty and sad as I see her so frustrated with herself. If she didn't get to her lunch club she would only get off her chair to see her daughter once a week and I would only get out for short walks on my own. That situation was giving me panic attacks 3 years ago. Since she started her club I joined a ramblers walking for health group on that day and have made a few very good friends I would otherwise not have time for. One friend's niece's mum has dementia far worse than my partner, so she knows something of what I talk about. Getting away for four hours, having a good chat and a friendly hug goes a long way.
How are you all coping?
 

marionq

Registered User
Apr 24, 2013
6,016
Scotland
Well I’m rediscovering myself after my husbands death in October. It is quite strange having responsibilities only to myself. I have started a Tai chi class twice a week, a Health Walk, I’m learning patchwork quilting by following a series on YouTube (very good) and I’m out and about as much as possible. We met when I was 16 and married when I was 21 so at 75 I really am in an unknown space.
 

Toppo

Registered User
Sep 12, 2018
14
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.
 

Starting on a journey

Registered User
Jul 9, 2019
80
I am in limbo!!! Can’t make any long term plans looking after PWD for how long? 59 and widowed, need a plan but at the moment it is a victory ticking over and planning the odd hour of me time every day if possible. I am sure I didn’t apply for this job!!
 

Thethirdmrsc

Registered User
Apr 4, 2018
113
Oh Toppo, are you sure you don’t live with my husband! Cause that sounds just like him, and there is nothing wrong with him you know. Alzheimer’s seems to have taken some of his awful traits and made them tenfold worse. Everything is a negative, and his swearing in general is worse. On Tuesday I threw my alarm clock at the wardrobe, missing him, but it was so instinctive, I have never done that before, so what am I going to be like a year or so down the road. Clearly I need help, but like everyone else, think that I should be managing, and the tunnel is getting darker. I am only 60, and while I didn’t envisage lots of exotic holidays, I did want more than sitting at home, and short slow walks. I have put my Fitbit back on and am trying to do 10,000 steps a day, before the weight creeps up too much.
 

Toppo

Registered User
Sep 12, 2018
14
Oh Toppo, are you sure you don’t live with my husband! Cause that sounds just like him, and there is nothing wrong with him you know. Alzheimer’s seems to have taken some of his awful traits and made them tenfold worse. Everything is a negative, and his swearing in general is worse. On Tuesday I threw my alarm clock at the wardrobe, missing him, but it was so instinctive, I have never done that before, so what am I going to be like a year or so down the road. Clearly I need help, but like everyone else, think that I should be managing, and the tunnel is getting darker. I am only 60, and while I didn’t envisage lots of exotic holidays, I did want more than sitting at home, and short slow walks. I have put my Fitbit back on and am trying to do 10,000 steps a day, before the weight creeps up too much.
Thank you. I do a "morning mile" before breakfast 5 days a week which does help me get through the day but "I am not OK" and "I do not have any insight into when I might be OK again"
 

Karen F

New member
May 27, 2018
1
It's all getting really hard watching my Mom deteriorate, I have had a Ring camera to check she's ok and to help guide her whilst on the phone. She's having a major problem with dressing, wearing numerous jumpers and underwear, and she's gone out to her day centre today and I heard her complaining she hasn't got any tights, she has a drawer full! I rang her 2 hours before she went out today and she changed jumpers umpteen times and then put a skirt on moments before they turned up along with another one. She has gone downhill since Xmas. She has her review tomorrow with memory services so we'll see how that goes
 

Birdseed

Registered User
Nov 28, 2019
16
Hello. I have been surprised how quickly my husband's symptoms have increased. I hoped there might have been gradual changes now his medication has kicked in. Is this usual, or is there no usual? He still thinks hes fine, so having to keep the door locked and hide the keys is hard for him to accept. He thinks I'm badgering him to shower, brush teeth, put on clean clothes etc etc, which I suppose I am. He doesn't drink enough, is stubborn about what he will eat. Sundowning is a problem, he thinks he has to be at 'that place' immediately regardless of time of day.
My Dad had dementia, but when it happens to your longterm spouse or partner makes it all so weird, as well the problems of dealing with the illness.
 

White Rose

Registered User
Nov 4, 2018
359
Nice idea to check in on how everyone is. The answer for most people seems to be, not doing too well!! Are we all struggling? Today what I'm finding most hard to deal with is the negativity which seems to have settled almost continually on my partner. I try to be cheerful but honestly when you're dealing with someone who can't do anything for himself, continuously complains of having nothing to do, mutters to himself all the time along the lines of 'I'm dead', 'I'm nearly dead', 'I don't know how to do it', 'no one looks after me', I've got nothing' and the swearing as well, he never used to swear. It gets you down, the only way to cheer him up is to take him out but you can't be out all day every day - today we went to a butterfly farm, it was lovely, warm and tropical inside and he loved the butterflies, big smiles, but he's forgotten it by the time we get home. I start a part-time job on Monday to try and reinstate some normality for myself but am very concerned because it's going to take a lot of juggling of carers and day care, we've had a trial run this week and he's not been at all happy with me not being around.
 

Shazza131

New member
Sep 18, 2019
4
Some days am better than others. I struggle with repeating myself over and over and find myself snapping at my mum occasionally when I have told her something the same over and over, my mum doesn't get upset but I do. I write everything down for her keep things in the same place have the same routine. I'm wondering if anyone had any more ideas how to help with this. Thanks
 

upton218

Registered User
Jul 27, 2010
7
Bexleyheath
My wife had Vascular Dementia and died over six years ago.At the time I felt lost but with family and the group of friends that knew both my wife and self they helped in getting over the loss. In December 2019 my son died from liver cancer. Once again my friends and family helped. All I can say is that whilst it is alleged to get easier with time the memories of visiting or seeing places will bring back happy thoughts.
Tony
 

DreamsAreReal

Registered User
Oct 17, 2015
9
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.
 

Mango

Registered User
Mar 16, 2014
45
New Zealand
Hi all,

I am hanging in here, but surviving, rather than thriving. Have looked after my Mum since 2011 (I first noticed something a bit odd in her behaviour in 2007). She is now 88, and still in her own home. I visit twice a day, and we aim for at least one outing each day. Her cognitive deterioration is slow, she is physically healthy, easy to care for, and in good spirits, so in many ways I am very very lucky.

I work part time, which is hard financially and I feel constantly tired, but am coping :)
 

Bella Cleo

Registered User
Aug 31, 2013
14
Humm I’ve felt on the edge the last few weeks mum is now living with me and hubby. Getting new carers in place as I live in a different borough has been a nightmare. Carers coming from social services with no experience of dementia patients so a complete and utter waste of time. This has caused me anxiety and panics wondering if I’ve done the right thing for mum and will I cope, what if I can’t, what will I do, and so on. My mind is like a spinning wheel looking at all scenarios but not reaching a conclusion because there isn’t one. I’m suppose to be going away for a week with my husband and am panicking already as mum is now incontinent but still uses the loo but leaves a mess. Sorry !! she uses whatever is near to wipe herself socks, flannels etc. Any advice please. Stressed beyond words
 

Bella Cleo

Registered User
Aug 31, 2013
14
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.
Hello can you please explain how the website works ?
 

Quigon jinn

New member
Jan 19, 2019
1
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.
Hi this is my first contribution. Wellbeing to me is now only just starting to be realized. This last year and a half, my father of 78 started to show signs of memory loss in the October we got the diagnosis last February. Since then hes gone down very quickly. We got him and my step mother in a home. Mainly because she is ten older and as dad is now incontinent most of the time and her being deaf is was very hard for her to cope with dad day to day. They have being in the sheltered accommodation home now for three months. Im now sleeping better as i no longer get phone calls from mother to go find dad when he was going walk about with only a shirt on at four in the morning. Hes now getting person care four times a day.
 

Agzy

Registered User
Nov 16, 2016
1,020
Moreton, Wirral. UK.
Hard to explain really as we are both in our late 70s and as well as ALZ my better half has 'compromised lungs,' from pneumonia, Osteoporosis, and poor mobility and yet is suprisingly able at looking after herself in many ways. The problem for me is constant worrying, absolute boredom from constant TV repeats and zero conversation on anything other than her sons, the abscentees. Depressed, yes I probably am in some ways and tired, that also but am still positive in believing that I will get time away in my little motorhome once the weather picks up. Ah, well.
 

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