Wellbeing discussion - checking in with each other during the second wave of coronavirus

SophieD

Administrator
Staff member
Mar 21, 2018
2,618
London
Hi everyone,

As we’ve entered the second wave, some of you are facing new coronavirus restrictions, and many of you still unable to visit loved ones in care homes. We wanted to take the opportunity to check in with all our members - old and new - to ask, how are you?

As the Coronavirus COVID-19 pandemic continues, this is a difficult time for many of you to be dealing with the realities of dementia along with the added complications of keeping track of changing guidelines to stay safe and well.

Please use this space to ask and answer questions about wellbeing, share practical advice with other community members, and let us know how you're really doing. 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
7,225
Bristol
It's not the biggest problem anyone will have to endure through the next 5 or 6 months of rolling restrictions. It is a serious scunner all the same. Back in February I was given £400 by the Council for Direct payments to cover extra care calls while I was going to be in London in April and again in October. If there was anything left to cover a summer trip that would have been great. Of course, none of these trips materialised. So, the carers support group suggested I use the money for lunchtime care calls one day a week to allow me to go for long walks with friends and not have to worry about rushing back. The only time the care agency can visit for lunch is 1.30 by which time C will be hungry and mad at me. They also lost my bank details and asked me to send again.
So, it's going to be a long winter with only 3 hours respite on a Tuesday when nobody else is walking, and hopefully still a rushed short walk on a Monday. Meanwhile, communication is getting harder as is her mobility. I should be happy with a short walk on a Monday with three friends, but don't half miss Thursday walks with a dozen or more friends and comrades while C is at day centre. That of course won't resume before the spring.
Best wishes and good luck to everyone, particularly those who have a lot more to worry about.
 

jennifer1967

Registered User
Mar 15, 2020
1,286
Southampton
i think its more the problem of contacting the doctors as they are more or less closed a part from phone consultations. they have face to face but rare.its hard to get to talk to the doctor of your choice past the receptionists which although not qualified, are called care navigators and ask the reason for call then direct to the appropriate person not always a doctor .they have introduce so many rules since first lockdown which will carry on through second wave you can go weeks without talking to any one. this has lead to my pain problems and not adequate painkillers. ive now emailed to see if i get a response that way. the same for my husband who has copd as well as dementia so has steroids regularly over the winter for his breathing and he finds it hard as well. he is worried about second wave even though we are in the lowest tier
 

None the Wiser

Registered User
Feb 3, 2020
128
I feel as though I’m entering a dark tunnel.
My husband has deteriorated significantly since the first wave of COVID. Then, he could come with me on walks, was able to attend day care ( before it closed ) , enjoyed his food and was able to manage some of his personal care. Now he is incontinent, unsteady on his feet, no longer able to attend day care because of his erratic volatile behaviour and needs feeding, dressing and twenty four/seven care. I can’t put him in residential care because of COVID restrictions, and concerns.
It’s going to be a considerable challenge to maintain my sanity, health and well-being. and to keep him safe.
 

Kellyr

Registered User
Aug 8, 2020
108
The stress of not being able to see my Mum in her carehome is horrendous and is cumulative I know my mental and physical health is suffering. Its an unsustainable situation for many people. We've got to a situation where 'care'homes are showing no empathy or compassion and are keeping people apart to an extreme degree all in the name of Government guidelines which in many cases are not even logical. We will look back in times to come and wonder how this was ever allowed to happen..
 

Fitzalan

Registered User
Apr 25, 2020
17
I think it's generally stress all round whether you live with a pwd, whether you don't live with a pwd, but are responsible for their care, or whether your pwd is in a care home in "normal" times, but Covid has just magnified that stress ten or more-fold. It's difficult to get medical treatment for them should they need it, though the same applies to everyone really. There seems to be little or no help of any other sort around unless there's a crisis, and to be honest I feel that pwds and their carers (and carers of all other sorts) have just been abandoned to get on with things as best they can. I'm lucky in that I live with my mum and can work from home - I can't imagine what it would feel like if my mum was in a care home and I hadn't seen her for months on end. But that has its own challenges in that my mum gets really anxious if I go out, so I tend not to, and since mid-March my sister has only taken my mum out on four separate days so that I could have a brief break. I was hoping to go to London to catch-up with some friends in a socially-distanced way just before my birthday next month, but as the chances are that we will be in Tier 3 by then, it isn't likely to happen.
So, like everyone else, I'm suffering mentally and physically. No solutions, I'm afraid, but good luck to us all!
 

None the Wiser

Registered User
Feb 3, 2020
128
We've got to a situation where 'care'homes are showing no empathy or compassion and are keeping people apart to an extreme degree all in the name of Government guidelines which in many cases are not even logical. We will look back in times to come and wonder how this was ever allowed to happen..
I completely agree.
 

Wishing20

Registered User
Feb 27, 2020
39
I feel exactly the same as @Kellyr ... the restrictions on visiting my Mum is devastating to all our family, not just me. I know we talk about recognition of Key Worker status and this would be brilliant if it ever happens, but we cant forget the extended family and how they are suffering too. This blanket lockdown of Care Homes, is insensitive, lacks any kind of compassion and common sense. Take for example the bare minimum of a window visit. We know Covid cant get through glass or bricks, but still we are denied this? The bare minimum, denied and why? Because of The “Guidelines” really??? When I tell people this they actually can’t believe its true! When will someone show some genuine care and compassion... in the meantime we wait and wait :(
 

Kellyr

Registered User
Aug 8, 2020
108
I feel exactly the same as @Kellyr ... the restrictions on visiting my Mum is devastating to all our family, not just me. I know we talk about recognition of Key Worker status and this would be brilliant if it ever happens, but we cant forget the extended family and how they are suffering too. This blanket lockdown of Care Homes, is insensitive, lacks any kind of compassion and common sense. Take for example the bare minimum of a window visit. We know Covid cant get through glass or bricks, but still we are denied this? The bare minimum, denied and why? Because of The “Guidelines” really??? When I tell people this they actually can’t believe its true! When will someone show some genuine care and compassion... in the meantime we wait and wait :(
@Wishing20 I spoke to a councillor in my area and hes (hopefully) going to ask the question higher up about window visits - ridiculous this should even be a thing. If he tells me anything interesting that can be of use, I will let you know..
 

Sarasa

Registered User
Apr 13, 2018
2,046
My mother's care home is allowing window visits and seems to have a complicated but sensible system in place to facilitate them. Trouble is for her and me it is next to useless. Mum is partially sighted, and talks quietly in random sentences . I'm severely deaf and can only hear her if I'm sitting right next to her. Trying to communicate with each other through a window isn't going to work. I've had one visit to her since March when they had a short spell of visits in the home. Those stopped due to another case of covid been found there and then my area going into Tier 2. The visit was not a success as mum didn't recognise me, thought I was horrible and should go away. The home keeps talking about a new system where they will take photos of the residents and send them to family and friends 'outside' on a regular basis, but that hasn't happened yet. I know mum is well care for, and even if I could see her regularly she still wouldn't be happy as she hasn't been since dementia got her in its grip, but it is so tough, as though she has died but not quite.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
72,142
Kent
I wonder if where possible, care homes can`t allocate one room for vivitors to see their relatives one in one out, face to face as in small shops.

When I go to the Hairdressers, my temperature is taken each time with a non contact forehead thermometer. I know there may be some people who are asymptomatic but the same could apply to employed carers entering and leaving the care home.

If I had a relative in residential care I think I would suggest it.
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,015
High Peak
Although I am very much in favour of mask-wearing, there is definitely a downside: it occurred to me that I haven't seen anyone smile for months :(
 

nitram

Registered User
Apr 6, 2011
21,299
North Manchester
I wonder if where possible, care homes can`t allocate one room for vivitors to see their relatives one in one out, face to face as in small shops.

Some care homes are doing this using a room with access to the outside although there is often a transparent screen dividing the room in two and using an intercom system, not perfect but better than a garden or window visit now that winter is here.
Others are building extensions for this purpose.
Of limited use to severely bedbound residents
 

Amethyst59

Registered User
Jul 3, 2017
5,764
Kent
The home my husband is in uses the system described by @Grannie G When the weather was nicer, it was possible to visit in the garden...the resident inside the fence and the visitor outside. I realise if we get more severe restrictions, even these limited visits will stop.
 

Triffid

Registered User
Oct 4, 2020
15
We’re just starting on the dementia journey with my dad - mum died in the summer and used to do everything for him so his dementia had gone undiagnosed but he’s now been to the memory clinic and diagnosed. It’s so hard trying to get things sorted and we’ve ended up going for live-in-Carers which means we can still visit him but takes a lot of effort trying to sort things for the house, his money, long term plans etc. COVID makes it all so much more difficult, especially as he has COPD and various other long term diseases, so is at high risk. Mostly I feel guilty all the time.
 

Wishing20

Registered User
Feb 27, 2020
39
I wonder if where possible, care homes can`t allocate one room for vivitors to see their relatives one in one out, face to face as in small shops.

When I go to the Hairdressers, my temperature is taken each time with a non contact forehead thermometer. I know there may be some people who are asymptomatic but the same could apply to employed carers entering and leaving the care home.

If I had a relative in residential care I think I would suggest it.
We and the Campaign Groups have suggested everything possible, some Homes who are understanding of the isolation grief and are compassionate try their best, then there are others who just quote “We are following the Guidelines” and do nothing or very little and there’s nothing we can do. It’s terrible, especially when you read what other Homes are doing.
 

Whisperer

Registered User
Mar 27, 2017
231
Hello All

Well here we apparently go again. So much media speculation about a second lockdown and no official denial or distancing from it. Either this is incredibly bad news handling and will be denied on Monday, or a botched attempt at news management. Either way it is very badly handled from the experience of ordinary people. We are going to need this thread as this winter unfolds. It is a great idea please keep it open over the winter and spring period.

What we all need now is clarity, honesty and a sense of purpose. Instead we seem to have numbing drift. Following the science. Which science would that be I wonder? They seem divided, No matter what your politics this has been handled badly this weekend, for the whole country and especially for carers, particularly with those whose loved ones are in care homes.

I would simply challenge MPs of all political colours to read this forum, then look me in the eye and say they are content with the current situation in Adult Social Care? Carers and their loved ones deserve better. Remember MPs Dementia makes no distinction for rank, privilege or wealth. In a dreadful way it is truly a leveller.

I await next week and see what is next.
 

Just me

Registered User
Nov 17, 2013
494
It's just been announced that Boris is holding a press conference at 4pm today so looks like whatever the announcement is, it isn't going to wait until next week.
Hello All

Well here we apparently go again. So much media speculation about a second lockdown and no official denial or distancing from it. Either this is incredibly bad news handling and will be denied on Monday, or a botched attempt at news management. Either way it is very badly handled from the experience of ordinary people. We are going to need this thread as this winter unfolds. It is a great idea please keep it open over the winter and spring period.

What we all need now is clarity, honesty and a sense of purpose. Instead we seem to have numbing drift. Following the science. Which science would that be I wonder? They seem divided, No matter what your politics this has been handled badly this weekend, for the whole country and especially for carers, particularly with those whose loved ones are in care homes.

I would simply challenge MPs of all political colours to read this forum, then look me in the eye and say they are content with the current situation in Adult Social Care? Carers and their loved ones deserve better. Remember MPs Dementia makes no distinction for rank, privilege or wealth. In a dreadful way it is truly a leveller.

I await next week and see what is next.

We do need honesty and clarity but I’ve heard very few politicians give a straight answer to a question. Why, what’s wrong in saying you made a mistake and this is how you’re going to correct it?

I’ve said it before, all those involved in the adult social care system should join this forum.
 

jennifer1967

Registered User
Mar 15, 2020
1,286
Southampton
i hope he doesnt um and hm like he normally does but sets a direction that we can follow and it makes a difference to the growing number of cases and that care homes can have visitors all the quicker. it must be an impossible situation for you and your relatives. im very sorry