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Feeling depressed and confused about visiting restrictions.

lemonbalm

Registered User
May 21, 2018
559
Hello @monkeygirl15 . It does really help to know we're not alone with these conflicting feelings, so thank you for posting. I still haven't tried an outdoor distanced visit to my mum. I told the care home that I daren't even risk it for her birthday tomorrow, as she is extremely volatile at the moment. I thought I'd feel better after making that decision (obviously I have sent flowers and gifts) but I think I feel worse with the full weight of the guilt monster on my shoulders. I expect, after all this tying myself in knots, mum will have a perfectly nice day tomorrow and not even notice that I haven't visited since March ... unless I do go after all 😱 AAARGH! Perhaps I'll just 'phone in the morning and decide then ....
 

mydiamondmum

Registered User
Nov 10, 2015
166
Monkeygirl, I do sympathies, I get migraines too over this issue as it is such a worry. Last week my mum's care home announced garden visits with PPE for 30 mins monitored and no touching and I have been holding out for Matt Hancock's further announcement but as we know there hasn't been one. So I am going tomorrow and can just hope that she won't be distressed by the short visit and being masked up and not able to touch her.

God bless everyone. Lets hope that this virus gets sorted soon.
 

mydiamondmum

Registered User
Nov 10, 2015
166
@Norfolk Cherry just to let you know you’re not alone feeling like this. My garden visit was horrendous because I was masked up and two metres away my husband just walked straight past me and the staff couldn’t persuade him to turn round, in fact I had to tell them to stop it and take him back in, I was just broken hearted. I can’t wait for the day when I can go back in and he’s greets me with a big hug and we can sit and listen to music and eat cake. So they’re not selfish feelings. I hope things can change everyone in this position as soon as possible for the residents and families equally x
 

mydiamondmum

Registered User
Nov 10, 2015
166
'I can’t wait for the day when I can go back in and he’s greets me with a big hug and we can sit and listen to music and eat cake.'

Norfolk Cherry, I so agree with your post.... I saw mum for the first time yesterday for a garden visit... she was very uncomfortable and stressed by it... at first she beckoned me to come into the home which of course I couldn't and she didn't understand... I tried to explain there was a virus around a bit like flue and we are not allowed in for now and she kept insisting that she doesn't have flue... when she tried come down the ramp with her rollator again she was very distressed and kept saying 'I am going to fall' I asked the staff to get her wheelchair but she had managed to come out by then. She looked very confused about what was happening I tried to make conversation but very soon she said you better go now before it gets dark, it was 2.30 but I know she just was confused about being in a strange situation that she wasn't used to and it was making her feel uneasy and insecure. It was horrible not being able to give her a kiss and a hug and like you Norfolk Cherry I can't wait for the day when we can sit and eat cake and listen to music. She was tearing up when I left. It was heart breaking she must be feeling abandoned.

I am very grateful to the Alzheimer's Society for their open letter to the Government; I will post a link here. I watched Matt Hancock on TV on my birthday 10th July stating that he would make an announcement within the next few days about this... I have been glued to the news since... still no announcement...


Can anyone from the Alzheimer's Society let me know what I can do to help speed the government on to address this very serious matter?

Many thanks and hugs to all the family members who feeling the same X
 
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Louise7

Registered User
Mar 25, 2016
2,369

Louise7

Registered User
Mar 25, 2016
2,369
Perhaps things might get better when shielding is 'paused' on 1st August? One of the tweets refers to knowing that the new guidance has been written so let's hope that it comes out soon. It was disappointing that yet again there was no mention of care home residents and their families in the latest government update and the timeline of restrictions being eased suggesting that things might return to 'normal' by Christmas. My 'normal' Christmas is spending time with mum in her care home, giving her presents and a hug and sitting watching a film together with chocolates and a glass of prosecco.
 

Baker17

Registered User
Mar 9, 2016
712
There's a piece in the Guardian today from Nicci Gerrard asking what "very soon" means and how many days are there in "a few days":

https://www.theguardian.com/comment...ncock-let-us-see-our-loved-ones-with-dementia
@Louise7 I am also wondering what his definition of a few days is, when a few days has been mentioned before it’s not been as long as these “few days”. Like you I am sort of pinning my hopes on the 1st of August when shielding ends. I’m just back from a window visit, the first time I tried my husband couldn’t “see” me, his expression was vacant even though he was inches away from me. I went and had a chat to the supervisor about how he was then said I would try again. Success he put his hands on the window and said come on it’s Hazel. He turned to the Carer and and said it’s Hazel she means the world to me. I was so happy it only lasted seconds but those seconds are so important. Counting down the days when we can hug and spend time together x
 

mydiamondmum

Registered User
Nov 10, 2015
166
Well I have used the template letter to email to my MP, I have tweeted (I think I have I am not really sure how to use it) but a younger friend said that if I used @Matthancock to copy him in. I have cancelled my care home visit for today as it is too distressing for both of us, she doesn't understand why I am sitting apart from her and it is heartbreaking, I will have a skype call instead. Although I sent the template letter to my MP today I did send my own version on 9th July as well as speak to his office but no one has got back to me about this and I feel that it is very urgent and am feeling helpless and concerned about my mother's well being. She needs me to comfort her and to be her memory and voice in a setting that she is used to not in a makeshift strange setting where I have to be distant from her. Even when she worried about falling on the ramp my first instinct was to rush to help her and then remembered that I wasn't allowed to touch her, it caused a bit of a commotion with the carer who was supposed to be monitoring the visit the nurse who quickly reminded me that I needed to be further away. This all added to my mother's stress and confusion.
 

Alzheimer's Society

Volunteer Moderator
Apr 6, 2009
2,328
www.alzheimers.org.uk
Hi @mydiamondmum. It looks like you've done everything right to support #OneDementiaVoice by writing to your MP and spreading the word on social media. Thank you so much for taking the time to do that.

If you're interested in campaigning with Alzheimer's Society, you can sign up as a campaigner here to stay up to date with the latest news and support future campaigns. You can also share your story here to inform and shape future and ongoing campaigns.
 

Norfolk Cherry

Registered User
Feb 17, 2018
298
Hello @monkeygirl15 , I just visited my mum and needed to log on and found this. The last two visits I've cried a lot afterwards, this time I struggled in front of her. Like your mum, she's lost weight, there's nothing of her. The feeling of wanting it to be over, the guilt attached and the wanting her to stay alive, get better and be my mum is awful. Trying to keep the conversation going through a mask and a plastic gazebo is really hard. I'm really sorry you're going through this. I think you are right, if you could hold her hand it might make a difference. How tragic is that? I think if they carry on like this through the winter I'll have to have her home. I can't let this be the last months of her life. I actually found myself thinking , "if my husband died, I could have her home" How messed up is that!
The unbearable truth is that they are worse because we stopped visiting. The fact that it wasn't our choice makes no difference to the feeling of desertion.
My mum knew me today and she made sense. She said, "my face seems to be stuck with a grimace on it" It's true, it's the medication. But that was the only thing she said, but there were proper smiles. Which made me feel worse.I hope you are Ok, sending a big hug xx
 

Norfolk Cherry

Registered User
Feb 17, 2018
298
@mydiamondmum and @Louise7 , sorry, I just found your posts after replying to monkey girl. You are so right about them relying on us to be their memory and voice, so hard to watch them trying to keep it together without our support. Fingers crossed the rules change, I'll write to my MP too. But I think our manager will go her own way on this. She's amazing, and I agree about the policy at one level. Fingers crossed and hugs all round XX
 

mydiamondmum

Registered User
Nov 10, 2015
166
Norfolk Cherry, I do sympathies and truly know exactly how you feel. I would urge you if possible to email your MP and would be happy to re post the template letter that someone kindly sent me. This needs to change urgently. They need to give us key worker status so that we can properly support our loved ones.
 

Louise7

Registered User
Mar 25, 2016
2,369
Mum's care home has just been in touch to say that a resident has tested positive so they are going back into full lockdown and all visits are cancelled until at least the end of the month. It wasn't great seeing mum in the garden but it was better than not seeing her at all, particularly as the visits had just started to get better :(
 

Norfolk Cherry

Registered User
Feb 17, 2018
298
Mum's care home has just been in touch to say that a resident has tested positive so they are going back into full lockdown and all visits are cancelled until at least the end of the month. It wasn't great seeing mum in the garden but it was better than not seeing her at all, particularly as the visits had just started to get better :(
Oh no, that sounds awful for both you and your mum. I'm so sorry Louise. It does bring it home that we must count our blessings. I hope that this gets cleared up and garden visits are resumed as soon as possible. x
 

Louise7

Registered User
Mar 25, 2016
2,369
Thanks @Norfolk Cherry I don't know the full circumstances but am hoping that the track & trace process doesn't suggest that the resident caught it from a visiting family member as that may also result in further more stringent visiting restrictions.
 

mydiamondmum

Registered User
Nov 10, 2015
166
Louise7, I am sorry to hear your news and hope that it gets resolved as soon as possible for you and your family.

I don't know how they would catch it from visiting family as if they are anything like my mother's care home we are all well and trully PPE'd up with a temperature test and blood oxygen test and at least 2m distanced ,plus any relative I know goes out of their way to ensure they protect themselves from contracting the virus just to ensure that their loved ones in care homes are protected, also most of the carers in my mum's home travel to work by public transport and when I got a glimpse inside the home I didn't see all staff wearing PPE
I don't think that residents are in any more danger of catching it from close relatives than they are from staff at the home and in some cases probably much less likely.
 

Margot99

Registered User
Mar 7, 2014
3
@Norfolk Cherry I was so relieved to read your post as I have had exactly the same feelings about my mother. It is so very difficult to think of anything else but your loved one at the moment . Visiting someone in a care home isn't just about seeing how your loved one is getting on, but making sure all is well generally with the care that they are receiving. It's just not the same checking in via Skype or through a screen (although I am very grateful I have that at least). If the government had any notion of the pain and distress that had been caused by keeping us apart for so long, I would hope they would have given it their attention sooner. Thank you for sharing how you are feeling, it is reassuring that many of us are struggling with the same feelings and try not to be too hard on yourself - it is not selfish to want some head space for yourself - keeping ourselves well and strong for our loved ones is important as well. Dementia is a misunderstood illness and these are very difficult times.
 

Norfolk Cherry

Registered User
Feb 17, 2018
298
@Norfolk Cherry I was so relieved to read your post as I have had exactly the same feelings about my mother. It is so very difficult to think of anything else but your loved one at the moment . Visiting someone in a care home isn't just about seeing how your loved one is getting on, but making sure all is well generally with the care that they are receiving. It's just not the same checking in via Skype or through a screen (although I am very grateful I have that at least). If the government had any notion of the pain and distress that had been caused by keeping us apart for so long, I would hope they would have given it their attention sooner. Thank you for sharing how you are feeling, it is reassuring that many of us are struggling with the same feelings and try not to be too hard on yourself - it is not selfish to want some head space for yourself - keeping ourselves well and strong for our loved ones is important as well. Dementia is a misunderstood illness and these are very difficult times.
Thanks Margot, it's an emotional rollercoaster for sure. I hope you are coping alright and it certainly helps to share on here and get the support we all need from each other. I've realised that one 15 minute visit takes two days out of my life because of the fear and dread the day before and tears the day after. But there it is, and there's no way out. Hopefully Hancock's latest announcement means we may be back in the homes visiting soon.