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Wellbeing discussion - checking in with each other during Coronavirus

MaNaAk

Registered User
Jun 19, 2016
2,541
Essex
I'm in a similar situation although dad passed away in June last year. I'm glad he's not seeing this but I miss him. I'm still going through his stuff but I have to divide my time with trying to get Piano and Violin pupils on-line and keep money coming in. Also I am just about understanding what the 'r' factor is.

MaNaAk
 

silkiest

Registered User
Feb 9, 2017
145
Hi @Shedrech , unfortunately she does not have the capacity to make these decisions. The admiral nurse has already suggested she may not have the capacity to safely decide if she should remain at home or go into residential care. MIL does not believe she has Alzheimers. She doesn't remember she has a rare form of leukaemia that will never go into remission, she does not remember that she has daily oral chemotherapy - for life- that puts her in the highest risk , shielded group. She doesn't remember frequent blood tests and visits to see the cancer specialist, or the 3 monthly injections I have to give her now as the GP surgery do not want her coming in and risking her health. She actively argues with me when I remind her I had to help her into the bathroom, undress and bathe her when she was at her most anaemic and tells me i"m stupid and know nothing. Today she will not remember how she was gasping for breath when she got back from the garden centre that was PACKED with people, only that we were annoyed and told her she should not have gone out.
 

Kezz

New member
May 10, 2020
1
Good evening Everyone hope your all managing well i know it's very difficult dealing with this huge thing called VIRUS and dealing with our every day work. I had a tip off in December so I booked my ticket to dubai and south Africa to see my children grandchildren and friends . 3 weeks flight back told go now or lock down . Since the 22nd of February iv been in isolation with Vascular dementia. Well thank goodness i was ahead of time with PPE . This agency no names but not once did anyone call to ask if they could do shopping or bring something. I'm a qualified lymphologist dementia carer mother granny and they don't even no if we alive . I'm really hurt im a top carer came back to the uk alone after 40 years and came on the 18th December 2019 . Iv not even had a chance to start my life here . Ok flat in windsor I have to give up now no point . Did anyone get any ex pay for no brakes no nothing actually???? I can't believe how people can be so selfish knowing we are protecting a elder live in care doing absolutely everything yet not even a plan of action for us carers that need to go for virus test or maybe £10 pounds more somthing for God sake . I'm to soft loving and caring to think about money but I also have bills to pay. I'm tierd of people taking advantage of the care industry. No PPE no are u ok how are u managing with both situations . Sorry if I'm going on and on but shoo I also need to help my son poor boy 2 little girls wife lost her job the closed all schools till maybe next year . Dubai everything is private and her money puts food on the table . So I need a raise for my complete isolation dedication in my work .
 

MaNaAk

Registered User
Jun 19, 2016
2,541
Essex
I have very mixed feelings about the situation. On the one hand, I am glad that I don't have to worry about mum. Either she would have been in a home that has had 8 deaths, or she would be at home, and I would be terrified I would catch the virus and give to her. On the other, the lockdown has made me brood more than I would have otherwise. Plus, I had a phone call asking for mum last week and a taxi driver asked how she was , so that was difficult. I was going to see about counselling before the virus came along, and have been given details for phone counselling, but now that I have them, I am having second thoughts. I am fine, or, maybe not so bad is more honest if I dont think about it. I am worried that this will only stir things up. I feel in limbo, which was bad enough BC ( before Coronavirus), but worse since. She pased away in November, and I still have most of her clothes on a stand in the living room. I had had ideas about re-arranging the living room but illogically now doing so, like the thought of getting rid of her clothes, seems like geting rid of her. It's illogical I know, but I feel stuck.
When mum passed away, I got over 20 sympathy cards, but only a few people have contacted me since to see how I am getting on, so I feel a bit bereft at times. Posting on here has been the one things that has helped me, to be honest. There is supposed to be a " Life after caring" course some time AC , altho I cant imagine how life will be after this. It feels like a double whammy, first mum's death, now this.
Dear CWR,

I forgot that whilst I received a lot of cards after dad passed away I found that not everybody understands what it is like to lose someone who you have been caring for who was suffering from dementia quite like the wonderful people here so please keep posting.

Love

MaNaAk
 

Agzy

Registered User
Nov 16, 2016
1,519
Moreton, Wirral. UK.
Like others both my partner (PWD), Pauline are I terrified of getting the virus. Her because following a severe dose of pneumonia her lungs are described as “severely compromised” by GP and me because I might give it to her. Things are even more unclear now since the easing announced by the Prime Minister as he didn’t mention the vulnerable over 70s group of which we are members, so not sure if we can relax our guard a little or not. Having said that I ventured out to a local shop today as P was just craving for some pears (have to be small conference type) and I was really frightened as not all seemed to be keeping the right distance away.
 

kindred

Registered User
Apr 8, 2018
2,492
Like others both my partner (PWD), Pauline are I terrified of getting the virus. Her because following a severe dose of pneumonia her lungs are described as “severely compromised” by GP and me because I might give it to her. Things are even more unclear now since the easing announced by the Prime Minister as he didn’t mention the vulnerable over 70s group of which we are members, so not sure if we can relax our guard a little or not. Having said that I ventured out to a local shop today as P was just craving for some pears (have to be small conference type) and I was really frightened as not all seemed to be keeping the right distance away.
I so agree, it can seem very frightening. I am in the over 70 bracket but not vulnerable so I do go out but when I go to the supermarket with security guards at the door and circles all over the floor and keep right arrows, I am sure i am about to violate some rule or other!!! Goodness knows what this will do to our going out and about confidence in the future!!
Good luck to you. Warmest, kindred
 

Agzy

Registered User
Nov 16, 2016
1,519
Moreton, Wirral. UK.
I so agree, it can seem very frightening. I am in the over 70 bracket but not vulnerable so I do go out but when I go to the supermarket with security guards at the door and circles all over the floor and keep right arrows, I am sure i am about to violate some rule or other!!! Goodness knows what this will do to our going out and about confidence in the future!!
Good luck to you. Warmest, kindred
Yes @kindred it was certainly an alien experience and one I would not like to introduce Pauline to as she has confusions enough. One issue is that she keeps asking for me to take her shopping or to go myself for something and, like you I am over 70 and not vulnerable (well I dont think so but kids say different) whereas P, also over 70 is very much a vulnerable person and if I brought it into the house it would kill her.
 

CWR

Registered User
Mar 17, 2019
199
I so agree, it can seem very frightening. I am in the over 70 bracket but not vulnerable so I do go out but when I go to the supermarket with security guards at the door and circles all over the floor and keep right arrows, I am sure i am about to violate some rule or other!!! Goodness knows what this will do to our going out and about confidence in the future!!
Good luck to you. Warmest, kindred
I find it a lot more stressful to do the shopping than anything. I am fine when indoors, watching telly or reading or on the internet, but as soon as I go down the town, I feel the stress levels rise. It's not a relaxing experience. I am just glad my mum is not around. I had another dream last night that I was looking after her. A carer and a former colleague were in it too, but they were ghosts, I could not communicate with them, they didnt see me, a reflection of my feelings about this crazy time.
 
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jennifer1967

Registered User
Mar 15, 2020
674
Like others both my partner (PWD), Pauline are I terrified of getting the virus. Her because following a severe dose of pneumonia her lungs are described as “severely compromised” by GP and me because I might give it to her. Things are even more unclear now since the easing announced by the Prime Minister as he didn’t mention the vulnerable over 70s group of which we are members, so not sure if we can relax our guard a little or not. Having said that I ventured out to a local shop today as P was just craving for some pears (have to be small conference type) and I was really frightened as not all seemed to be keeping the right distance away.
he said that those vulnerable should still isolate. i took notice because my husband is shielding. i go to local shop at 8-9am so i dont have to be in a crowd. i am scared that i will give my husband the virus. he has bad copd and spends half the time on steroids which also reduces immunity.my son takes me in to tesco once a week in the car we do have to eat
 

SophieD

Administrator
Staff member
Mar 21, 2018
2,434
London
Thank you to every one who has shared how they're feeling and how Coronavirus is affecting you and your loved ones, I hope it's been helpful for you. It's a difficult time but we're all in this together and we have a wonderful, supportive community here on Talking Point. Please continue to use this thread to check in on each other :)
 

gadfly

Registered User
Apr 26, 2011
8
London
Thanks Sophie.
It's the fear of catching the virus and either passing it to my partner or being so ill I am no use to her that stresses me on my daily walks. I need to walk as I can't handle being indoors all day, that predates caring and dementia by a long way. The little things like C going to day centre which gets her moving and gives me time to be with my friends for a walk, a BLT and pint of beer have been so missed even though I am in touch with some of them through social media. However guilty and strange I felt about a hug and wee kiss from a friend at the time I don't half miss that human contact.
Social Services have set us up with a volunteer who does the mid week shopping and even though sometimes she gets the wrong things the relief of not having to go to shops one day in the week is so good. I still go on a Saturday as the drive out into the country listening to music on the car CD player and taking in the scenery is such a respite in its own right. That shop has a great queuing system and rarely feels overcrowded too.
Sorry, I've probably said all that already somewhere else. Anyway, I hope everyone is managing in circumstances and finds this as helpful as the previous discussion.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,779
Kent
Next week sees the start of my 12th week in self isolation. I`m sure many here can say the same.

It is what we were advised we may need especially if we were in a certain age group and/or had underlying health issues.

At the time I remember feeling horrified but after a couple of difficult weeks was surprised to realise it is amazing what we can get used to.

All along my heart has been with those here on TP who are in the throes of caring, either at home or having someone isolated in hospital, and those who have lost dearly loved family members without even being able to say a last goodbye.

There might be some small reprieve soon but I wonder how many of us will be nervous about returning to the world after so many weeks in isolation. Will we feel safe? Will life ever be the same again?

I just hope this doesn`t last much longer, although I think it might.

I`m not ashamed to admit I`m finding it tough. I`m sure many more are feeling the same.
 

Julianna

Registered User
Dec 8, 2016
3
Wales
Hi everyone, and welcome to our second wellbeing discussion.

This is a very difficult time for many of you to be considering Coronavirus as well as dealing with the realities of dementia. We've also seen a lot of new members join us over the past few months so we thought what better time for another wellbeing discussion so we can check in on one another.

This discussion is a chance for you to ask and answer questions about wellbeing, share practical advice with other community members, and let us know the answer to that all-important question, how are you? This way you can share your emotions and advice with others who understand and have lived experience to share.
 

Julianna

Registered User
Dec 8, 2016
3
Wales
A good friend of mine lost her mother with dementia a few weeks ago. She lived in a care home and because of the lock-down her family were not able to visit. The home relaxed the rule for them to visit once because the mother was dying. Only 5 family members were allowed at the funeral and I feel guilty because I would have gone to the service and now I can't even visit my friend.
I know the rules are for everyone's safety but I will be glad when things return to some sort of normality.
 

jennifer1967

Registered User
Mar 15, 2020
674
now more people are able to meet in their gardens social distancing of course, im more worried about my husband who is shielding and as yet we are not allowed to have children and grandchildren around yet this could be the more risky than ever. my husband has been sitting by door step but if there are more people about he will probably have to move in the back garden. he wont have passing people he can say hello to but weve got this far we keep going another few weeks.im just sad that its not our family that will be coming round when others have theirs. im pleased for them but it makes me miss mine more. a few tears and i will be fine.got to keep going for my husband. i go out early and son picks me up so at least ive had a change of scene. just feeling sorry for myself. others have it so much worse
 

Helen E

New member
May 24, 2020
6
If I'm honest am struggling - not necessarily with the lockdown itself as I don't get out that much in normal times because of my own health problems, but I do feel bad that I can't get to see Mum even though she never remembers that we have been to see her and constantly tells carers in the home that we never visit. I get frustrated when I see people ignoring the lockdown (this was before the slight easing of the lockdown) - do they think it won't happen to them? This virus has certainly bought out the best in some people and the worst in others.
I know that I am "luckier" than many in so far as I know that Mum is being well cared for and I don't have the constant struggle of coping, but not seeing your loved one brings it's own problems

Feel better now for actually putting it in writing - thank you for setting the thread up.
Take care everyone
Is this thread supposed to appear in the reply box?
I’m new to this
SOMETIMES, YOU NEVER REALLY KNOW THE TRUE VALUE OF A MOMENT UNTIL IT BECOMES A MEMORY
My husband mutters to himself a lot and talks and repeats his stories. I have just finished “Married th Alzheimer’s “ by Stephanie Booth and she said that at the end of life with Tony she would have given anything just to hear his stories again. I’m greatly moved by this simple thought
 

principlecarer

New member
May 5, 2020
3
Couldn't give a monkeys about catching the virus. I am more concerned with the fact that my mental state is in overdrive having had my mother who has Alzheimer's with me for the past 10 weeks. She is up and about by 2/2:30 and we loop the loop all day and all night until she is asleep about 10pm. I can not even have a conversation with family or friends without her on my shoulder. This lockdown has been a total disaster. She now says she does not want to go back to her own apartment without me. Lets get back to normal as soon as possible and just take our chances because this alternative is driving me nuts.
 

TNJJ

Registered User
May 7, 2019
1,727
cornwall
I was alright for the first few weeks.Dad has carers in4x a day but they disappeared for a while as they thought he had coronavirus but he didn’t so I was there. It took me back to when I was full time caring for him and I could have screamed. So I understand where you are coming from.
But as this lockdown got longer and longer I could feel my mental health slip away.
It has got better now as dad has the carers back but I am upping my visits with him as I need to keep on top of things.
Then there is mum...Another story. So I too will be glad to get back to normal.
 

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