How is the cost of living crisis affecting you?

HarrietD

Staff Member
Staff member
Apr 29, 2014
9,556
0
London
Our Fundraising team are keen to hear about the impact of the cost of living crisis on people affected by dementia. While people across the country are being affected in many different ways, it's important for the team to be able share with donors exactly how the situation is affecting people with dementia and their families. This could include:
  • Fuel costs impacting hospital appointments, care home visits, or other activities
  • Energy bills affecting your home life - or any worries for the winter months
  • Food prices
  • If someone in your family has given up work/reduced their hours due to diagnosis or caring responsibilities, has the cost of living had an even greater impact on that change?
This isn't an exhaustive list, but anything that is impacting you would be really useful for the team to hear about. It will help to bring these issues to life for our supporters, whose number one concern is always supporting people affected by dementia.

Thanks everyone.
 

Jilly1

Registered User
Jul 22, 2013
66
0
Nottinghamshire
Our Fundraising team are keen to hear about the impact of the cost of living crisis on people affected by dementia. While people across the country are being affected in many different ways, it's important for the team to be able share with donors exactly how the situation is affecting people with dementia and their families. This could include:
  • Fuel costs impacting hospital appointments, care home visits, or other activities
  • Energy bills affecting your home life - or any worries for the winter months
  • Food prices
  • If someone in your family has given up work/reduced their hours due to diagnosis or caring responsibilities, has the cost of living had an even greater impact on that change?
This isn't an exhaustive list, but anything that is impacting you would be really useful for the team to hear about. It will help to bring these issues to life for our supporters, whose number one concern is always supporting people affected by dementia.

Thanks everyone.
My husband has Alzheimer's and leaves lights and just runs tap water down the drain. I am dreading the cost of these utilities
 

JD55

New member
Mar 10, 2022
6
0
My mom is 91 , has dementia and heart failure as well as diabetes , she has Incontinence now so washing a lot more , she leaves taps running , lights on all night etc so struggling to keep up with all the rising costs , had to stop her using the cooker and microwave too
 

spitfire1

Registered User
Feb 3, 2015
8
0
My husband is in a care home approx 20 miles away, the cost of petrol is limiting the amount of times I can visit
 

Wifenotcarer

Registered User
Mar 11, 2018
341
0
77
Central Scotland
Although I am now a widow rather than a carer, I would add that my household Gas/Electric bills dropped by almost 50% when my husband went into a care home. I surmised that this was due to no longer having 7 0r 8 loads of washing/drying each week, lights, TV, Electric fire being randomly switched & left on, the need for sometimes twice daily showers and constant reheating in the microwave of abandoned meals & drinks. I was fortunate that DH's Care home was within walking distance, otherwise there would have been fuel costs for visiting him on average 3 or 4 times a week.
 

Turningshed

New member
Jan 16, 2022
4
0
82
HI I'm 80 and looking after my wife 77 who has mixed dementia, I fined that the cost of living increases doesn't have much impact on us, mainly because I get the full carers allowance and only spend 2/3rd on household services to help with cleaning and befriending, so the rest can pay for the gas and electricity, we are not able to take holidays, go for a meal or theater because the wife is house bound
 

DennyD

Registered User
Dec 6, 2016
264
0
Porthcawl, South Wales
Although I am also now widowed as the previous poster and some bills have reduced the cost-of-living crisis is impacting. So that I could support my husband's needs during his Alzheimer's I gave up a reasonably paid job. Once he transferred into care and sadly passed away soon after admission, I needed to find employment. I'm not at retirement age yet. Due to the employment gap since I left my job and my age (not far of 60), it was an anxious struggle to find new employment. I was lucky to eventually get back into work however, find myself now on an income at the minimum wage. I find myself having to live on a strict budget.
 

HelpInOut

Registered User
Oct 19, 2021
64
0
Since my Dad who has dementia moved into residential care as a full fee payer, Mam who's 85 has all the same household bills ( except a 25% reduction in Council tax and perhaps slightly reduced water bills) to pay on her own. She only gets £90 a week OAP because of her NI contributions but she does have a small teachers pension too, but she's above the threshold for pension credit.
She is also undergoing assessments for dementia and forgets to close windows and seems to struggle using the heating controls and complains of being cold even when it's 22c in the house. Does things like open the kitchen window and has the thermostat sitting right beside it and the back door standing open so the heating is pumping away.
Also forgets about things in the tumble dryer which is in the garage, so it cools right down , has to get back up to temp and then gets forgotten again. The electric and gas bills for a 500 sq ft bungalow are the same as ours in a house twice the size.
Obviously the cost of petrol has affected her , but to be honest she only really goes to visit Dad and to the shop for groceries.
 

Anthoula

Registered User
Apr 22, 2022
2,086
0
My OH leaves lights on and taps running, and you would not believe his generosity with watering the garden and plant pots for the last few weeks! I`ve tried all ways I can think of to get him to be less generous, but he will not be discouraged! Unfortunately we live in the south east of the U.K. and have almost forgotten what a raindrop is!
 

Grant50

New member
Aug 18, 2022
7
0
My mom lives at home with me - the tv is on all day for her whilst i work upstairs , lights are left on at night so she can see and find the toilet when she wanders around. She doesnt seem able to regulate her body heat and she insists on pulling a full duvet over her so in the morning shes wet with sweat and i have to shower her and wash her nightie and bed clothes daily. The heating was also on a lot more although thankfully not during this most recent heat spell! Its hard finding things she likes to eat and whilst she may be enthusiastic about something for 2/3 days, she then goes off it and the remainder is wasted if no one else eats it and different other foods are brought in - but food has increased too.
 

HelpInOut

Registered User
Oct 19, 2021
64
0
My mom lives at home with me - the tv is on all day for her whilst i work upstairs , lights are left on at night so she can see and find the toilet when she wanders around. She doesnt seem able to regulate her body heat and she insists on pulling a full duvet over her so in the morning shes wet with sweat and i have to shower her and wash her nightie and bed clothes daily. The heating was also on a lot more although thankfully not during this most recent heat spell! Its hard finding things she likes to eat and whilst she may be enthusiastic about something for 2/3 days, she then goes off it and the remainder is wasted if no one else eats it and different other foods are brought in - but food has increased too.
My mam lives alone and sounds similar to your mom. I think she judges whether the house is warm in the morning by whether the radiators are on or not. Also sleeps right through summer with the same 2 blankets on as she has in winter.
As for food, she goes out shopping and forgets what she's already bought and buys it again, so I'm sure a lot of stuff gets thrown out. Last week she told me she'd gone off cheese, but this week I went into the fridge and there's a huuge lump of cheddar in there.
Half the time I've no idea what she eats. We used to make things and put them in the freezer for her, but she started complaining she didn't like x, y and z, that she previously used to eat and enjoy, and they were getting wasted so we stopped.
Hard work ?
 

Patricia2

New member
May 30, 2022
1
0
Our Fundraising team are keen to hear about the impact of the cost of living crisis on people affected by dementia. While people across the country are being affected in many different ways, it's important for the team to be able share with donors exactly how the situation is affecting people with dementia and their families. This could include:
  • Fuel costs impacting hospital appointments, care home visits, or other activities
  • Energy bills affecting your home life - or any worries for the winter months
  • Food prices
  • If someone in your family has given up work/reduced their hours due to diagnosis or caring responsibilities, has the cost of living had an even greater impact on that change?
This isn't an exhaustive list, but anything that is impacting you would be really useful for the team to hear about. It will help to bring these issues to life for our supporters, whose number one concern is always supporting people affected by dementia.

Thanks everyone.
So much food is getting wasted in our house. I cook, he has a couple of forks then says he will eat it later. It gets microwaved later then gets put in the fridge because he then decides he will eat it tomorrow. Of course it ends up in the bin. Due to prices I’m buying less now and being careful. What he wastes in a week would feed another person. I try to vary the food so he’s not getting bored but it doesn’t always work. So frustrating.
 

InElysium

Registered User
Mar 14, 2011
43
0
Dad, 91 with BvFtD.
Turns on central heating even during heatwave! Doesn't always shut fridge door properly so ice builds up but slams every other door!
That doesn't bother me too much compared to his aggressive abusive hostess mode behaviour. As I always say - Dementia seems to be the legalised version of domestic abuse / coercive control. Always paranoid about his money. As much as the Council Tax Energy Rebate and Cost of Living payments are useful, if it only goes into the main householder / Pension Credit name and myself as carer or Mum can't access it without Dad getting overly protective and paranoid, may as well not even get any payments.
Between me and my Carers Allowance and my Mum's Pension, we seem to be spending a lot more on food and bills and things.
Great when fuel payments go direct to the energy supplier, but when it is direct payments, perhaps the Govt should be a bit more aware. I do know that direct payments are a quick mechanism for Govt to pay out quickly to the most vulnerable but there must be some in the same situation where finances are concerned.
 

Windy28

Registered User
Jan 8, 2020
133
0
Two things that have affected my OH this week due to increased costs of absolutely everything and lack of funding everywhere.

It has been an exhausting 3 weeks trying to get him some outside stimulation and a change from being in the house all day climbing up the walls (with me).

1. I have been trying to get him to the Singing for the Brain Club in Melbourne at the Senior Citizens Centre, only to be told it has closed down and the classes are no longer running.

2. I have also been enquiring about the Spirit and Soul Equine Assisted Activity Centre CIC in Stenson and getting my OH to go there for some much needed well being time, only to be told it is no longer funded so they can't operate these classes.

All these disappointments impact my OH and also me, the tired, overwhelmed, unpaid carer. IT IS ALL BECOMING TOO MUCH TO BEAR.
 

Sagar

New member
Jan 9, 2022
1
0
Our Fundraising team are keen to hear about the impact of the cost of living crisis on people affected by dementia. While people across the country are being affected in many different ways, it's important for the team to be able share with donors exactly how the situation is affecting people with dementia and their families. This could include:
  • Fuel costs impacting hospital appointments, care home visits, or other activities
  • Energy bills affecting your home life - or any worries for the winter months
  • Food prices
  • If someone in your family has given up work/reduced their hours due to diagnosis or caring responsibilities, has the cost of living had an even greater impact on that change?
This isn't an exhaustive list, but anything that is impacting you would be really useful for the team to hear about. It will help to bring these issues to life for our supporters, whose number one concern is always supporting people affected by dementia.

Thanks everyone.
Like many people here, my story is similar. My dad suffers with Alzheimer’s and often has all the lights on, a fan running and the heating on full blast. I’m scared for how high his bills could go.
 

Bunpoots

Volunteer Host
Apr 1, 2016
7,311
0
Nottinghamshire
Welcome to the forum @Sagar

My late dad was the same - heating on full last and opening all the doors and windows when it got too hot. I really dread to think how these price rises are going to be for people. Perhaps attention needs to be drawn to the particular problems of people with dementia who have no concept of cost.

Campaign anyone!?
 

bigfoot

New member
Jun 13, 2022
4
0
My wife has diabetes and suffering early onset dementia, I have stopped work and become her carer so income has dropped to a minimum. Claiming carers allowance and other benefits is helping but as we are not claiming Universal Credit we do not get the £600 payment the Govt preach about. Paying Gas and Electric bills by prepay meter its already costing £45 per week so with the new price rise coming its likely to wipe out the carers allowance come winter time. Only have a small pension coming in. hos[ital and doctors visits are made by taxi adding more costs. Shopping has become ridiculously expensive most items even in the cheaper shops are now £1 or more where they used to be 70 -80p
a recent weekly shop at Tescos ( we generally go to different places and shop around) Cost us £147 nothing more than just weekly shop. I was shocked when i got the bill, no way could we do that every week especially with the extra taxi cost of £15 on top.

This winter and the following year will push many people over the edge god knows how we will get through it all. Far too many people on the breadline missing out on much needed help, you can shout but nobody is listening they all think we are just scroungers. Hope and pray that something can be done to help all those who are in dire need of it
 

SeaSwallow

Volunteer Moderator
Oct 28, 2019
5,155
0
@bigfoot Welcome to Talking Point. Would you be able to do your shopping online. At about £8.00 per month it would be cheaper than a taxi every time you need to shop. I would not live without home shopping.
 
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lollyc

Registered User
Sep 9, 2020
940
0
@bigfoot do you have a local community car scheme? They should be able to help with doctor / hospital appointments, and may be cheaper than a taxi.
 

RosettaT

Registered User
Sep 9, 2018
866
0
Mid Lincs
I lost my husband in February and my electric bills (I'm all electric) have halved.
No more charging air cushions, batteries for hoist or power assisted wheelchair, air mattress and profile bed plugged in and charging 24hrs a day, extra heating, not to mention cooking higher nutritional meals most days etc, etc.
These were medical necessities for my husband and you don't realise just how much electric they consume.