Relatives & Residents Association

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How can a daughter with know-how of mum’s dementia connect with her carers?

“I’ve been working really hard to keep mum living well with dementia, to stimulate her. That’s now fallen off a cliff. Covid has pulled up the drawbridge. I feel so shut away from her.”

Our family has been happy to be partners in care with the homes my 88 year-old mum has been in for the past eight years, mainly for her dementia. Between me and my sister we visit mum about 6 days per week. We used to take her out on social outings, health appointments, we used to sing songs in the car, we would chat and were happy.

She has only been in her current home for a year, the staff are lovely and mum seems to feel loved. We are very grateful for the good care she has had but lockdown has had a devastating impact on her physically and mentally.

Now mum can’t walk, has to be hoisted, can’t feed herself and is now on a puréed diet. Most significantly it is her mental function that has declined and this has a huge impact on our visits. Thankfully, we are now allowed garden visits but they are fraught with difficulties for mum.  We have to wear masks now and she doesn’t register me, even if I am right in front of her. It takes the full time allowed for a garden visit to settle her. We know we are luckier than some to have even that. It’s accepted that care homes are ‘doing a great job’, trying their best to protect the vulnerable, so we feel we shouldn’t challenge the difficulties we are having with garden visits. As her advocate for years I want to speak out to change things but everything is stacked against me.

I feel powerless and like I’ve let her down. No-one is asking us what would make this better, how families could be partners in care. There is no space for our opinions. Covid has wiped out any notion of consulting and involving families, as care homes have gone into survival mode. The mantra has become ‘we are following guidance’ no matter how big the holes in it. That guidance should be clearer, with less scope for interpretation whatever way a care home sees fit. With huge local variation in the interpretation of guidance, families can be in a postcode lottery as to what is allowed from care home to care home.

Watching mum’s decline I can’t wait to be allowed closer to her, to see what we can do to reawaken her brain cells. We can’t be left, as a result of Covid, with a mum who can’t speak, walk or talk, with her cognition gone. It will leave a huge hole in our lives that won’t go away and we will not get over losing this precious time with her.

 

R&RA are campaigning to End Isolation In Care. Find out how you can get involved here.

If you have been affected by the issues raised in this story, or would like advice or support on visiting your relative or friend in care, our helpline is here for you.

“R&RA has listened, conveyed our issues, especially at the APPG and in the media.”


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