Your tips: supporting someone with dementia as lockdown rules change

HarrietD

Administrator
Staff member
Apr 29, 2014
5,880
London
Our magazine includes real life experiences with every issue, and they'd like to hear from you.

What advice would you give for supporting a person with dementia who's feeling confused by the changes to lockdown rules?

This could relate to things like local lockdowns, restrictions loosening then tightening again, and different people having different comfort levels when going outside.

Please add your comments below, and they may be featured in the next issue of the magazine.

Thanks everyone :)
 

Whisperer

Registered User
Mar 27, 2017
231
Hello Harriet

Not to sure if my experience will really help others. However no one else has yet replied to this thread so if I kickoff then perhaps others will follow.

To be honest mum does not really understand Covid19. With her loss of memory that is not surprising. We now rely on internet shopping, Skype with my siblings, walks in the back alley to keep up leg strength, E consultations with the doctor mean we have mostly avoided visiting the GP surgery, drives in the car but not getting out of it are now our time out of the house a few times a week. We use to visit other towns mum knew from the past, lunches in cafes, sit on park benches and watch the world go by, chatting to the odd stranger sat on the bench with us. All gone now. A combination of Covid19 and mum’s increasing reluctance to engage with people in general and unknown places in particular.

Mum and face masks is a bit hit and miss. Fine at the GP surgery first time, not the second time. I just say if we do not wear them they will not let us in, few grumbles but mum sees everyone else in them and accepts the new normal without comprehending it. I had to explain why my supermarket job two nights a week had to go in March, now I just say I got made redundant like lots of other people. Mum does not understand fully but accepts such things can happen. Chalk up love lie number god only knows.

Mum’s illness I think at a deeper level is now becoming apparent to her. She understands there is something wrong but not knowing what it is. Increasingly mum is happy to stay at home and shut out the rest of the world. I think I would find this more challenging and limiting in the absence of Covid19. So many others shielding are doing the same, that aspect of caring has actually got easier for me to accept. It just goes with the territory of caring for an elderly PWD, who has underlying health issues.

My heart goes out to those trying to support a PWD who lives alone. I do not have to worry about mum wandering off, getting on a bus without a face mask, etc. How can you warn a PWD who forgets what is said within minutes? I would suggest the answer is you cant in any meaningful way. I would like to slightly broaden out this question to two areas which I believe are being overlooked during Covid19.

1) Anyone really struggling to care for a loved one thinking about a care home for them, even for respite care, now has an even harder decision to make. Not only the normal emotional heart ache but the added worry of will Covid19 get into the care home. I am not in that position but god that must be a tough call. Try and muddle on hoping to avoid carer burn out, or accept the increased risk of any time in a care home.
2) I have two siblings working in public facing jobs. They had not seen their mum beyond Skype since March. We recently arranged a socially distanced meeting in the back garden to celebrate mum’s birthday. They help me picking up prescriptions, grocery items I cannot get on the Internet, leaving them in the shed. They are not invisibles, but do not want to come near mum for fear of infecting her with Covid19. Not easy as precious time with mum is slipping away. Afterwards I received texts which told me how much seeing mum in the flesh had meant to them, even socially distanced. I care for mum day to day. It is hard trying to tell them how mum is doing as Dementia is so unpredictable, new issues gradually present and I deal with them. Personally I find it hard knowing what to tell them in my email updates, what I have taken on, what is important, what comes and goes, etc. There must be others having the same problem. It must be harder having siblings living further away. I can manage Skype to a degree, only at good times for mum, giving her prompts, helping guide and manage conversations.

Well I have rambled on enough. Now let others jump in with more pertinent and sensible points. I said let others...................
 

HarrietD

Administrator
Staff member
Apr 29, 2014
5,880
London
Thank you @Whisperer for taking the time to share your experiences, and for expanding the question too. It sounds like you're doing the best you can for your mum during exceptionally difficult circumstances.
 

Blossom50

Registered User
Aug 22, 2016
19
For me and my family it's not just the lockdown rules, everything about covid has changed my family forever.
My mum was my dad's carer at their home for many years, it was an awful struggle for her in so many ways, which I am sure you all know. Repeating conversations, missing the man she married, overwhelmingly tired, unable to participate in any activities together, and so it goes on. She was too stubborn to accept help, and then suddenly it was too late! Lockdown came and she couldn't even go to do a weekly shop, family couldn't visit, we all provided help remotely, but it wasn't enough. . She ended up in hospital, and died on 18th April. My dad stayed with me a few nights and with my daughter for a few more, until we found him a place in a care home. I made one of the toughest decisions of my life, it tore me in pieces. At the same time trying to arrange a simple funeral for mum in the way she would have appreciated.
For a while we could visit dad at his window at the home, but when he became a permanent resident he was move to a different room so we could no longer do that. Then we were told no visits of any kind due to local restrictions, now we are on pre booked garden visits, one person only. He doesn't know where he is or why he is there, but he accepts it. All I can be thankful for is that he is being looked after and kept safe. He turned 90 last month and I know these are his twilight years. It hurts that we cannot make any good final memories together, he is losing touch with the family, we all love him so much. The only advice I can offer anyone on this forum is to always be ready to adapt and do your best regardless
 

Izzy

Volunteer Moderator
Aug 31, 2003
63,253
69
Dundee
How terribly sad @Blossom50. Sending my condolences on the loss of your mum. My heart goes out to your dad. Wishing you strength.
 

Whisperer

Registered User
Mar 27, 2017
231
Dear @Blossom50

I am very sorry to read about the loss of your mum and your present situation with your dad. Words are useful in most situations but not all. I will remember your advice about being ready to adapt. Please take care and I hope you get a chance in the near future to visit your dad inside the home. Best wishes.
 

HarrietD

Administrator
Staff member
Apr 29, 2014
5,880
London
Thank you for sharing @Blossom50. I'm so sorry to hear about the loss of your mum. I'm also sorry about the situation that your dad is in - it sounds like an incredibly difficult time for you and your family.
 

Blossom50

Registered User
Aug 22, 2016
19
Thank you for sharing @Blossom50. I'm so sorry to hear about the loss of your mum. I'm also sorry about the situation that your dad is in - it sounds like an incredibly difficult time for you and your family.
So, now the care home have stopped all visits for 28 days, due to 3 residents testing positive. And on top of this Borris has just announced more restrictions which are likely to last at least 6 months. The hurt goes on, I have never been so sad and wouldn't wish this on anyone
 

Ramblingrose

Registered User
Feb 2, 2020
27
It is very difficult at these times. If I had a pound for every time I have explained why we are not going out since the beginning of the lockdown I would be a millionaire. Unfortunately my mother's memory has deteriorated badly since we first realised she may have dementia she retains very little information now. I have tried prompts and prompt aids to no avail. Like a previous comment we have had a little stroll round the block but even that is becoming harder. One thing that does keep her amused for a while is music. Thank goodness for Alexa, which by the way, she thinks a tiny woman is inside.
 

Agzy

Registered User
Nov 16, 2016
1,637
Moreton, Wirral. UK.
Since lockdown my OH’s family have become “the Invisibles,” and very very few visits to mum/grandmother and no phone calls either. She does get upset but my white lie is that it is the government rules because of the virus and this she accepts whereas the truth would break her heart.
 

try again

Registered User
Jun 21, 2018
271
I've just put in Amazon echo show in my living room and my mum's. It's been 2 days now and she seems quite happy just to have a brief chat. My sister will be installing hers this weekend. Mum is set to drop in only, all other fancies have been disabled. Hoping this continues to be useful to us but early days.
 

wonderfulmum

Registered User
Aug 20, 2015
44
Hi
I've managed looking after mum by routine and she's been content with it. I've made sure the day is split up and we have variety through each day.
From Shower, breakfast, TV show, Reading, Exercise, Crafting, cooking together, daily walk around the block, Beading, Tea and Biscuits, Match it game, easy sewing with kids sewing kit, TV Singalong and video and phone calls.. Because it's varied she is happy and even though her friends call and complain about the lockdown etc she tells them to do different things like she does.

Don't get me wrong she questions everyday why we can't go to town or to relatives house. She also still remembers her old routine, where she used to go at what time and with who, so this I do have to say why she can't at the moment.

Me on the other hand I crave the breaks I used to have when family would take mum for few hours etc... my recharging time, my coffee or lunch with friends time, oh I miss those days.

On the plus side, I'm enjoying cooking and making my own recipes.

It's all swings and roundabouts and we are all in this together. Stay safe everyone, love to you all x
 

Acceber

New member
Oct 3, 2020
5
Hi
I've managed looking after mum by routine and she's been content with it. I've made sure the day is split up and we have variety through each day.
From Shower, breakfast, TV show, Reading, Exercise, Crafting, cooking together, daily walk around the block, Beading, Tea and Biscuits, Match it game, easy sewing with kids sewing kit, TV Singalong and video and phone calls.. Because it's varied she is happy and even though her friends call and complain about the lockdown etc she tells them to do different things like she does.

Don't get me wrong she questions everyday why we can't go to town or to relatives house. She also still remembers her old routine, where she used to go at what time and with who, so this I do have to say why she can't at the moment.

Me on the other hand I crave the breaks I used to have when family would take mum for few hours etc... my recharging time, my coffee or lunch with friends time, oh I miss those days.

On the plus side, I'm enjoying cooking and making my own recipes.

It's all swings and roundabouts and we are all in this together. Stay safe everyone, love to you all x
Your list is great thanks. Going to pinch to use with my mum! X
 

wonderfulmum

Registered User
Aug 20, 2015
44
Your list is great thanks. Going to pinch to use with my mum! X
I have found a few activities like mushroom peg boards keep mum busy for 2hrs sorting colours and putting them in order on the board and I put her threading/sewing with plastic needle next to her so she goes onto that once she's done with the pegs, it gives me a few hours to get other things done or time to read and mum is happy too.
Amazon has loads of affordable easy to do activities. I hope this helps you as I know how precious time with PWD is and for yourself too. Take care x