Hi HLA
Mum's care home for which she pays £83k outside of London, has quarterly relatives meetings both in person and via zoom, and we are encouraged to ask questions, suggest support and engage with all residents to assist. The care home take able residents out to places, and canvass for people who have time out to help with the residents to take them to local places involving just a few hours, but also an annual event to the sea-side some way from the home involving a whole day's commitment.
They have management staff available to answer questions during Zoom time but also privately on email. They have regular days where the residents and those supporting them come together for fun activities like May day fetes, wine evenings etc. They have activity co-ordinators who regularly show on their website/facebook what residents have been up to and are happy to get feedback and suggestions on what else to do/where to go etc.
I was a carer to Mum for over 6 years whilst holding down a full-time job and living 1.5 hours away from her, before I sadly couldn't cope anymore and had to admit her to a care home with a dementia unit. There were only 2 in her area that would take her.
Mum's home, which is not perfect, is very much a "if you can donate your time" ... please come with us and take all our people out and they advertise and send emails and newsletters to enourage people to give their time.
Mum's home has activities coordinators who do marketing stuff to get the local theatre, school plays, and schools engaged and then they desperately need people who can help with residents to take them out to these offers.
As you've said, the home may have regular staff to look after people but they don't always have the volunteers they need to take residents out of the home and ensure their safety. And whilst they may have Activitiy co-ordinators, there's only a limited number of them so they really need volunteers to help when there is an opportunity to take many people out of the home to an event they would not otherwise experience but is so important for their well-being.
Who visits those who aren't visited and have no relatives and are at later stage Dementia and unable to get out of their beds?
Well there is an issue. But I know that the care staff in Mum's home are there for them but my Mum, like many with middle-late dementia, wander in and out of each others rooms and Mum focuses on those who are in their beds and unable to leave their beds or talk. Some how Mum knows that these people are in crisis, and because they are on her ward, she just gravitates to them.
Initially, when Mum went into the care home, I was told that Mum was constantly going into other people's room, sitting with them, talking rubbish to them (because Mum's dementia means she's can't string sentences together that make sense), it caused me confusion why they let her do this? Sometimes, the people she visited got stressed and shouted out for her to leave, other times, I was told by the care staff, xx person likes her being there.
When I visited Mum, she'd say "I can't go to that room ... they don't like me" and she'd be stressing out about going passed a room, but I later realised that's because she was trying to sit with people who are late dementia and at that stage where whatever anyone does they will shout out "... help me ... help me" over and over for awhile before that phase of their neurons stops firing and they go to later stage where they cannot talk anymore.
Initially I wondered why is Mum on such a ward with such people that will cause her distress and why is she trying to care for them when the normal staff aren't?
It's taken me 2 years of Mum in a care home to understand how this works. Mum will become one of those people. I can't be there 24/7 for Mum. And she will go down hill to that stage.
And there will be new residents who come in, who like Mum, will have their compassion still in place and will try and talk to such people beacuse they think they are helping.
Does the care home stop them doing this. Should they stop Mum going through this emotional journey when she has dementia herself, surely they should protect her?
I'm now at this point where I know my Mum will be one of those people who can't talk, can't get out of their bed, are in "God's waiting room". And maybe they have family who visits them, or maybe they don't, but my Mum is a compassionate person, cares for people and the care home don't stop her from doing what she does because they know that the person who Mum visits is now end of Dementia, and basically, can't talk, is struggling to eat, is perhaps very much end of life, and their relatives can't be there 24/7 but my Mum, because she's there 24/7 and passes their room, she will always go in and she'll sit with them, talk totally rubbish, but she's talking to them, and she also holds their hands when she talks to them.
It's really hard to see this happening in a care home setting with loved ones with this disease and not feel angry that they aren't being looked after but seem to be helping with care home staff because there aren't enought of them to support someone in their care.
But I really have learnt that I put Mum on this ward and in this care home on the understanding that she will be there until she dies and they will look after her and care for her no matter what stage her dementia takes.
Her room is her room. It's like her home. She will never leave it. Mum will become like the lady next to her, who perhaps 5 years previously was as spirited and a good soul as Mum.
I'd like to think that when Mum in a few years time reaches that point where she can't talk, is bed-bound and there is no family member visiting her, that there are other "newer" people with early-middle stage dementia, that have the kindness of heart and compassion, that they visit her room, and talk to her even if what they say doesn't make sense, and they hold her hand.
It's a hard disease to get your head around. My Mum is 83, but she first exhibited this at age 70 and I've been struggling ever since. I'm 65 and have to work full time until 70 because of pension issues, and I'm scared, I'm just 5 years off from facing what I have gone through with my Mum. My Dad died of a heart attack aged 70 and Mum just gave up and left me responsible for her.
It's interesting that now, it seems that we are more responsible for our loved ones thatpreviously. I'm power of attorney, etc and having to spend so much time sorting my Mum's stuff, and now trying to sell her house and her contents, it just feels like I don't have a life any more. It just always seems that my life is about my Mum and caring for her.
I'm sure there are many out there that feel the same.
But HLA, if you have this energy about what care homes do? Can you devote the energy we don't have to change something at a policitical level?
All the best to everyone who reads this post and keep strong - it's hard, but you will get through this.
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