Changes to care home visiting guidance 'coming soon'

Louise7

Registered User
Mar 25, 2016
2,247

Grannie G

Volunteer Moderator
Apr 3, 2006
71,499
Kent
I agree, I had my first outside visit this week and my experience was horrendous :(
I sympathise completely .

I would have hated to have visited my husband in this way. He would not have been able to understand what it was about and would have become more confused than ever.
 

Angel62

Registered User
Apr 8, 2013
25
Wolverhampton
I have just been to visit my husband in his nursing home after over 4 months of lockdown. I was horrified at the deterioration. He was screwing up his eyes and peering at this strange person in a mask, plastic apron and bright orange gloves. We had such a connection before although his vocabulary had virtually gone but now with no hand holding or a simple hug there is nothing. He just appeared really uncomfortable physically and emotionally. I just felt devastated. This is not what it means to be a human being. I would rather run the covid risk and give him some quality of life. This is an excellent home and the care is second to none but this is not appropriate when your loved one has advanced Alzheimer's.
 

Baker17

Registered User
Mar 9, 2016
632
I have just been to visit my husband in his nursing home after over 4 months of lockdown. I was horrified at the deterioration. He was screwing up his eyes and peering at this strange person in a mask, plastic apron and bright orange gloves. We had such a connection before although his vocabulary had virtually gone but now with no hand holding or a simple hug there is nothing. He just appeared really uncomfortable physically and emotionally. I just felt devastated. This is not what it means to be a human being. I would rather run the covid risk and give him some quality of life. This is an excellent home and the care is second to none but this is not appropriate when your loved one has advanced Alzheimer's.
I can totally sympathise with you as my visit was horrendous, that’s only word I can use to describe it. I was hopeful last week when Matt Hancock said there would be an announcement in a few days, a whole week has passed and nothing has happened. Because of my persistence there is a meeting with the Chess team, care home manager and myself, the OT on the Chess team said to me the other day a balance needs to be reached so I can have a meaningful visit.
An e mail has just pinged up about the issues I raised after my visit with the manager above the care home manager I need to go and read it, I’ll report back later.
I hope and pray that we can help our loved some quality of life very soon as this situation is just getting too hard to bear. x
 

Baker17

Registered User
Mar 9, 2016
632
Well I’ve read the email and as I expected it had no positive news. One alarming thing it did say they were looking at more substantive gazebos as winter would be coming on!
So as you can imagine I’m feeling rather low and not in a glass half full frame of mind. x
 

Amelie5a

Registered User
Nov 5, 2014
121
Scotland
We had such a connection before although his vocabulary had virtually gone but now with no hand holding or a simple hug there is nothing.
I can so sympathise... two days ago I saw my Dad for the first time since March 8th. We were in a corridor ( he's currently in an NHS dementia assessment unit), two metres apart. I was wearing a mask which Dad picked up on straightaway, asking why i was wearing it.

To be honest, I was surprised that Dad seemed to know who I was, but he just didn't want to be in the corridor! He kept suggesting I go inside with him and couldn't understand when i said I couldn't.

But we had no conversation of any sort as he couldn't hear me ( his hearing is bad and I used to talk in to his one 'good' ear), but , of course, I couldn't get near enough to do that. I resorted to a bit of mime, but hardly ideal!

All I wanted to do was give Dad a great big hug and tell him he was loved! But, of course, it's not allowed.

Surely it can't continue like this for the next year or so? I'd take any number of Covid tests if it allowed me to get closer to Dad. A big hug would mean so much - to him, and me. His dementia is pretty advanced now and, at 93, other health conditions are never far away - surely, meaningful time with those who love him, ought to be permitted.
 

Baker17

Registered User
Mar 9, 2016
632

DesperateofDevon

Registered User
Jul 7, 2019
2,685
I have just been to visit my husband in his nursing home after over 4 months of lockdown. I was horrified at the deterioration. He was screwing up his eyes and peering at this strange person in a mask, plastic apron and bright orange gloves. We had such a connection before although his vocabulary had virtually gone but now with no hand holding or a simple hug there is nothing. He just appeared really uncomfortable physically and emotionally. I just felt devastated. This is not what it means to be a human being. I would rather run the covid risk and give him some quality of life. This is an excellent home and the care is second to none but this is not appropriate when your loved one has advanced Alzheimer's.
My mum has care at home & we visited on Sunday
Even holding her hand the connection was gone & i hugged her only to be pushed away - actually that's not uncommon before she had dementia but .... the most horrific thing was the fact her delusions / hallucinations are now constant both audio & visual . Speech well random with little coherence dotted in .

Honestly it's broken my heart - keeping Mum safe to only suffer & die of aspirational pneumonia like my Dad did. Pandemic- take precautions yes but there comes a point when quality of life over quantity has to be a factor ...... this is a terminal disease in its late stages - depriving loved ones of time together is pointless - i'm sorry but for us now we are left dealing with the aftermath of emotions & the fallout of aged mothers behaviour after the visit.

in hindsight i wish i hadn't gone - it's caused more issues in her behaviour than the benefit of having a visit . No one benefitted from the visit & with the likelihood of another protracted lockdown this autumn hard decisions need to be taken by family on how to approach & deal emotionally with this issue of visiting. Not forgetting for some with dementia contact through ipad/ facetime/zoom isn't an option. If you can't communicate via a telephone then you write yes but to what avail - if that person doesn't have the cognitive ability

I think guidance from the government is all well & good but ultimately the care home has a duty of care to ensure contact with the family - ultimately when you have power of attorney it's the families decision on visiting & arranging to do this safely.

I can't see this ending well as it's being mismanaged on too many levels - leaving those loving someone with dementia with yet another set of issues to resolve ( as if folks didn't have enough !)
 

Palerider

Registered User
Aug 9, 2015
1,848
North West
My mum has care at home & we visited on Sunday
Even holding her hand the connection was gone & i hugged her only to be pushed away - actually that's not uncommon before she had dementia but .... the most horrific thing was the fact her delusions / hallucinations are now constant both audio & visual . Speech well random with little coherence dotted in .

Honestly it's broken my heart - keeping Mum safe to only suffer & die of aspirational pneumonia like my Dad did. Pandemic- take precautions yes but there comes a point when quality of life over quantity has to be a factor ...... this is a terminal disease in its late stages - depriving loved ones of time together is pointless - i'm sorry but for us now we are left dealing with the aftermath of emotions & the fallout of aged mothers behaviour after the visit.

in hindsight i wish i hadn't gone - it's caused more issues in her behaviour than the benefit of having a visit . No one benefitted from the visit & with the likelihood of another protracted lockdown this autumn hard decisions need to be taken by family on how to approach & deal emotionally with this issue of visiting. Not forgetting for some with dementia contact through ipad/ facetime/zoom isn't an option. If you can't communicate via a telephone then you write yes but to what avail - if that person doesn't have the cognitive ability

I think guidance from the government is all well & good but ultimately the care home has a duty of care to ensure contact with the family - ultimately when you have power of attorney it's the families decision on visiting & arranging to do this safely.

I can't see this ending well as it's being mismanaged on too many levels - leaving those loving someone with dementia with yet another set of issues to resolve ( as if folks didn't have enough !)
I whole heartedly agree @DesperateofDevon, emotionally not being able to visit mum has become the biggest burden and also regret
 

Baker17

Registered User
Mar 9, 2016
632
My mum has care at home & we visited on Sunday
Even holding her hand the connection was gone & i hugged her only to be pushed away - actually that's not uncommon before she had dementia but .... the most horrific thing was the fact her delusions / hallucinations are now constant both audio & visual . Speech well random with little coherence dotted in .

Honestly it's broken my heart - keeping Mum safe to only suffer & die of aspirational pneumonia like my Dad did. Pandemic- take precautions yes but there comes a point when quality of life over quantity has to be a factor ...... this is a terminal disease in its late stages - depriving loved ones of time together is pointless - i'm sorry but for us now we are left dealing with the aftermath of emotions & the fallout of aged mothers behaviour after the visit.

in hindsight i wish i hadn't gone - it's caused more issues in her behaviour than the benefit of having a visit . No one benefitted from the visit & with the likelihood of another protracted lockdown this autumn hard decisions need to be taken by family on how to approach & deal emotionally with this issue of visiting. Not forgetting for some with dementia contact through ipad/ facetime/zoom isn't an option. If you can't communicate via a telephone then you write yes but to what avail - if that person doesn't have the cognitive ability

I think guidance from the government is all well & good but ultimately the care home has a duty of care to ensure contact with the family - ultimately when you have power of attorney it's the families decision on visiting & arranging to do this safely.

I can't see this ending well as it's being mismanaged on too many levels - leaving those loving someone with dementia with yet another set of issues to resolve ( as if folks didn't have enough !)
I totally agree with you. The manager of my husband’s care home has been conspicuous by her absence and silence.
I was talking to the CEO of our local Carers association and she said someone needs to take it to court. It’s all well and good saying that but a court case can cost tens of thousands. My experience of the family court was summed up by the judge saying in his closing statement “ I am not here to judge on matters or impact on health but to uphold the law”, so I can’t see it working in these circumstances.
 

Angel62

Registered User
Apr 8, 2013
25
Wolverhampton
Well I’ve read the email and as I expected it had no positive news. One alarming thing it did say they were looking at more substantive gazebos as winter would be coming on!
So as you can imagine I’m feeling rather low and not in a glass half full frame of mind. x
Like you we were in a blue gazebo with sides so you could only see from one open side. It didn't help. The whole experience made me feel I'd put him through a distressing and confusing ordeal with no gain for either of us. Was it even worthwhile?
 

Amy

Registered User
Jan 4, 2006
3,454
Just had email from care home, despite recommendations from Hancock, local council and care home have decided visiting only to be in room with Perspex screen and hopefully garden visiting...but two fences between us😮. Some visits ok, others horrendous....just want to give dad a hug.
 

Amelie5a

Registered User
Nov 5, 2014
121
Scotland
I was talking to the CEO of our local Carers association and she said someone needs to take it to court. It’s all well and good saying that but a court case can cost tens of thousands
Rather than the legal route there's a growing campaign to treat relatives of people with dementia in care homes as 'key workers', recognising the role they have in supporting their loved ones. It would mean regular testing, but would at least open up the way for involvement with our PWDs who are in care.

More here:https://www.alzheimers.org.uk/news/2020-07-09/open-letter-secretary-state
 

Angel62

Registered User
Apr 8, 2013
25
Wolverhampton
While I am glad that this strong letter has been issued, after seeing my husband as I explained in my earlier post , I just feel helpless and desperate as the days slip by. I am going to try and see my husband again soon but if his response is the same I will have to reconsider visiting. It put him through such obvious discomfort and he had no idea who I was,that there are no benefits to seeing him under current conditions. He is content in his familiar surroundings but this was alien and confusing. It's just heartbreaking.
 

Amelie5a

Registered User
Nov 5, 2014
121
Scotland
Oh Angel, it's so hard to see that deterioration and to feel so helpless.

I think the point of being regarded as key workers though, means that you can be indoors, help with care, and touch your husband.

Seeing my Dad the other day I was struck by the fact that I was forced to sit 2 metres away. Yet when he was cold, one of the staff brought him his fleecy, helped him with putting it on - and then, when I left, she took Dad by the arm and off they went, side by side.

Yet, in all honesty, she was as much a risk to Dad as I was. She goes home at the end of her shift, probably does some shopping, may have family. Whereas I live alone and have minimal contact with anyone.

The only difference is, she is tested regularly.