Feeling depressed and confused about visiting restrictions.

[VerityH]

Streuth ... isn't this all awful? Yesterday was the anniversary of my dad's death (he had been in a care home for a year, dementia, but lucid 'in the moment' - though just for that moment!). I am so pleased he died before all of this. My mum, also suffering with dementia, is in a care home. I've seen her 4 times since March, and those visits have not been particularly successful. All outside in the garden, thanks to the good summer weather. The first time she didn't know it was me due the mask and length of time since she'd seen me, so subsequently I removed the mask when I greeted her so she could recognise my face (I know she knows my face, though not sure she realises I am her daughter any more). The worst thing is not being able to touch her. Hugs and kisses were most definitely her thing, and since she talks absolute nonsense these days and doesn't really have a clue what's going on, we filled our visits with hair care, nails and looking at cookery books etc just so I had something to burble on about while spending time with her. Tbh, I wonder really how much our loved ones get out of this sometimes - it's all about us, sometimes, isn't it?

Anyway, now the care home have limited visits to one nominated family member only. In our family it makes sense for this to be my older sister, who lived 5 mins from mum's home, whilst I am an hour away. I feel relieved, as the visits without cuddles were unbearable. I do understand the need to keep the homes covid free if possible, but when you see the carers hugging and holding hands with your mum while you are kept 2m distant, I wonder about the rules ... who knows where that carer has been and how many people she's been mixing with, when I haven't ventured anywhere except the Spar shop for months! Anyway, rules is rules, and we have no choice.

Like so many of you in the very sad posts above, I can't help wondering whether my mum would be better off catching the blasted disease and joining dad somewhere much better than this. There. I said it.

Much love to you all. What a s**t time to live through. I just miss my mum like mad.

 

[Bunty2410]

Is there anyone else out there in the awful position of having a parent in their own home who should ideally be in residential care but you know that if they go into care you won’t see them for who knows how long? My sister and I are feeling trapped by Covid

 

[CardiffGirlInEssex]

Is there anyone else out there in the awful position of having a parent in their own home who should ideally be in residential care but you know that if they go into care you won’t see them for who knows how long? My sister and I are feeling trapped by Covid

Yes, my mum should really have gone for despite care whilst dad is in hospital but she wasn’t willing and there was no way I could dress it up as a little holiday for her knowing she’d been in solitary confinement for 2 weeks and no visitors at all for the duration (she is in Wales, so is Dad and he can’t have visits either).

also I know that going to a strange environment would undoubtedly massively accelerate mums dementia decline such that she probably wouldn’t be able to return home. So I do the M4 shuffle every 10 days or so, and break the rules by staying with her each time, although the visits themselves are within the reasonable excuse definition.

However, if she is suddenly unable to cope I will have to bite the bullet and get social services to find her a respite place. Crossing my fingers this doesn’t happen because I think that would be even more stressful for me than the current situation.

 

[Bunty2410]

It is so challenging.
My mother lives on her own down a country lane with only a couple of neighbours. We live 2 hours away. I got a call at 6.30 pm last night to say she’d got out of the house and walked about 1/4 mile without her aids or coat to see her house bound neighbour, who was somewhat alarmed. Upshot was she thought there had been a group of people in the lane, (in fact transpired this was due to a UTI) the door had been locked and bolted but not deadlocked by the last visitor so she had gone for help. 4 hour round trip a lot of apologies to marvellous people who had helped her.
got very grumpy with me because I wouldn’t take her home or stay the night and no thanks for coming to help her either.

 

[Trekker]

Streuth ... isn't this all awful? Yesterday was the anniversary of my dad's death (he had been in a care home for a year, dementia, but lucid 'in the moment' - though just for that moment!). I am so pleased he died before all of this. My mum, also suffering with dementia, is in a care home. I've seen her 4 times since March, and those visits have not been particularly successful. All outside in the garden, thanks to the good summer weather. The first time she didn't know it was me due the mask and length of time since she'd seen me, so subsequently I removed the mask when I greeted her so she could recognise my face (I know she knows my face, though not sure she realises I am her daughter any more). The worst thing is not being able to touch her. Hugs and kisses were most definitely her thing, and since she talks absolute nonsense these days and doesn't really have a clue what's going on, we filled our visits with hair care, nails and looking at cookery books etc just so I had something to burble on about while spending time with her. Tbh, I wonder really how much our loved ones get out of this sometimes - it's all about us, sometimes, isn't it?

Anyway, now the care home have limited visits to one nominated family member only. In our family it makes sense for this to be my older sister, who lived 5 mins from mum's home, whilst I am an hour away. I feel relieved, as the visits without cuddles were unbearable. I do understand the need to keep the homes covid free if possible, but when you see the carers hugging and holding hands with your mum while you are kept 2m distant, I wonder about the rules ... who knows where that carer has been and how many people she's been mixing with, when I haven't ventured anywhere except the Spar shop for months! Anyway, rules is rules, and we have no choice.

Like so many of you in the very sad posts above, I can't help wondering whether my mum would be better off catching the blasted disease and joining dad somewhere much better than this. There. I said it.

Much love to you all. What a s**t time to live through. I just miss my mum like mad.

Hi Verity I’ve lost count of how many times I’ve thought it would be better for my parents to die rather than be lost in their dementia, and now that they are also cutoff from family touch I feel it more often and with stronger conviction. From a personal perspective, dementia was already such an unbearable prolonged grief before COVID that I naively thought it couldn’t get any worse. How wrong I was.

 

[Kellyr]

Hi @Kellyr pleased to hear that you can have an indoor visit, but as you say half hour a week isn't enough. Yes, mask and gloves seem a bit ott. Mums care home are talking about having an indoor room that can be accessed from outside, and also a screen on order, tho no time scale. I will be taking my thermals with me this weekend for a window visit!

Good luck...!

 

[anxious annie]

Very emotional, but great publicity for the campaign to gain safe indoor visits, on This Morning (Thursday October 8th)

 

[Bikerbeth]

Very emotional, but great publicity for the campaign to gain safe indoor visits, on This Morning (Thursday October 8th)

Thanks for the update I will have a look on iplayer

 

[anxious annie]

Saw my mum for her birthday yesterday and feeling quite sad . I had told the manager that it was too cold for mum to have a garden visit (apparently some are still having these), so I saw mum through the window, a small gap at the bottom. Thankfully I didn't have to wear a mask, but it was still difficult to hear mum, and I had to shout for her to hear me, and she is of good hearing. I count myself lucky that mum is on the ground floor, otherwise I couldn't have seen her face to face at all. Poor mum was saying to me "you can come in you know", if only!

 

[Mandy76]

Well my mother's care home has gone back into lock down for the next month due to a covid case being found. So that is us stuck again being unable to see her. I never saw her for 5 months from March till August but I was getting to see her once a week outside - but that is now stopped. The visits were not good anyway, she was always cold and uncomfortable and just wanted to go back inside. I spoke to her on the phone last night and she was crying and saying "come and pick me up". This whole situation is just a nightmare - my heart goes out to all in this predicament.

 

[annielou]

Aww sorry to hear about your visit @anxious annie window visits seem really awkward and confusing. Hope for your next visit they come up with an alternative. X

 

[father ted]

Have found this thread really helpful to know how others are coping.
My Mum has been in her care home for 2.5 years and had settled well. We visited 2 or 3 times a week.

I have seen Mum 3 times since the middle of March, that was face to face but all masked and gloved up with no touching. I do speak on the phone twice a week but not really satisfactory. Every time the home send out a; update they say they hope to resume visiting if they remain Covid free and then of course someone comes down with it and we are back to square one again. The last 3 occasions I called Mum said she wants to come home, she is unhappy and hopes she doesn’t wake up. This is so distressing to me as I have no other siblings who could phone instead or just talk to about how guilty and helpless I feel that there is nothing I can do to make her feel even slightly better. I try to distract her by asking what she had for lunch, how her various ailments are but she comes back round to wanting to come home. So I carry on phoning having the same conversation twice a week, dreading calling but feeling even worse if I don’t.

 

[lemonbalm]

The last 3 occasions I called Mum said she wants to come home, she is unhappy and hopes she doesn’t wake up.

Are you able to speak to the care home staff and see how your mum is when she is not talking to you? I very rarely speak to my mum on the 'phone (it's quite a struggle for her to talk a lot of the time and Skype distresses her too much) but send her cards and little gifts once a week instead. I call the care home staff to check on how mum is about once a week too. Do you think this may work for you and your mum? It may be less stressful for you and your mum will still know you are thinking of her.

 

[Kellyr]

So sorry we're all still going through this agony.. I expect everyone saw the piece by Esther Ranzen in The Daily Express yesterday. Shes always been a good campaigner so maybe her involvement with help fingers crossed ?

 

[father ted]

Are you able to speak to the care home staff and see how your mum is when she is not talking to you? I very rarely speak to my mum on the 'phone (it's quite a struggle for her to talk a lot of the time and Skype distresses her too much) but send her cards and little gifts once a week instead. I call the care home staff to check on how mum is about once a week too. Do you think this may work for you and your mum? It may be less stressful for you and your mum will still know you are thinking of her.

Thanks for your reply: https://forum.alzheimers.org.uk/members/lemonbalm.74349/

I do send up a little gift parcel once a fortnight, mainly magazines, toiletries and sweets with a little card included so she knows I am thinking of her, just silly bits of news and I always play down whatever we have done as I don’t want her to feel she is missing out on stuff( although life is very narrow at the moment).
I have spoken to staff in the past & they had got the GP to tweak her meds but Mum
told me on the last call ‘ I don’t need a dr, I need to come home’.
I am sure when looked at collectively with all the other residents she is doing about the same as them but it still hurts because she is MY Mum. I know so many feel the same but thank you for reading my post and replying.

 

[Kellyr]

Helen Whately has just said theyre going to pilot the keyworker scheme 'very soon' !!

 

[anxious annie]

Thanks @annielou , it's really tough for everyone going through this loss of meaningful contact @Mandy76 and @father ted . I saw the article in the Express by Esther Rantzen and just heard that Helen Whately has said they will pilot a key worker scheme for family @Kellyr , but also wondering what her definition of "very soon" is. I hope it isn't like when Matt Hancock talked of testing family back in July..... still waiting for that.

 

[Kellyr]

Thanks @annielou , it's really tough for everyone going through this loss of meaningful contact @Mandy76 and @father ted . I saw the article in the Express by Esther Rantzen and just heard that Helen Whately has said they will pilot a key worker scheme for family @Kellyr , but also wondering what her definition of "very soon" is. I hope it isn't like when Matt Hancock talked of testing family back in July..... still waiting for that.

It could all be a damp squib, all we can do is hope (and pray)

 

[anxious annie]

Well no news of a start date for the pilot study yet ... no surprise there . I wonder if the government will use the rise in case numbers as an excuse for delay? It certainly seems to be an excuse for Public health Derbyshire , all visits banned in tier 2 and 3 ( except end of life), and suggestion window visits not fair in tier 1 if not all residents have access. Surely the homes should be making access for all, rather than just taking this crumb away from ground floor residents as it's not "equitable".

 

[Sarah1208]

Streuth ... isn't this all awful? Yesterday was the anniversary of my dad's death (he had been in a care home for a year, dementia, but lucid 'in the moment' - though just for that moment!). I am so pleased he died before all of this. My mum, also suffering with dementia, is in a care home. I've seen her 4 times since March, and those visits have not been particularly successful. All outside in the garden, thanks to the good summer weather. The first time she didn't know it was me due the mask and length of time since she'd seen me, so subsequently I removed the mask when I greeted her so she could recognise my face (I know she knows my face, though not sure she realises I am her daughter any more). The worst thing is not being able to touch her. Hugs and kisses were most definitely her thing, and since she talks absolute nonsense these days and doesn't really have a clue what's going on, we filled our visits with hair care, nails and looking at cookery books etc just so I had something to burble on about while spending time with her. Tbh, I wonder really how much our loved ones get out of this sometimes - it's all about us, sometimes, isn't it?

Anyway, now the care home have limited visits to one nominated family member only. In our family it makes sense for this to be my older sister, who lived 5 mins from mum's home, whilst I am an hour away. I feel relieved, as the visits without cuddles were unbearable. I do understand the need to keep the homes covid free if possible, but when you see the carers hugging and holding hands with your mum while you are kept 2m distant, I wonder about the rules ... who knows where that carer has been and how many people she's been mixing with, when I haven't ventured anywhere except the Spar shop for months! Anyway, rules is rules, and we have no choice.

Like so many of you in the very sad posts above, I can't help wondering whether my mum would be better off catching the blasted disease and joining dad somewhere much better than this. There. I said it.

Much love to you all. What a s**t time to live through. I just miss my mum like mad.