We asked the group if the wished to stay on Zoom, given the ending of covid restrictions on the 19th July. Our members said they enjoyed the convenience of Zoom and were happy to keep these meetings online.
[I missed this meeting, but we had the delightful Gyda taking notes – hence the improvement in quality.]
A new member
We welcomed a new member to the group. She was only 20 when her dad was diagnosed (age 63) with Alzheimer’s. There is no experience of dementia in the family. At first it was thought to be depression. The family looked after him for 2 years at home, but he very quickly deteriorated and has been in a home for two and a half years.
[There can be rapid deterioration in young onset before age 65. Sometimes doctors look for depression rather than dementia. The whole family need to be involved. You can read more about young/early onset dementia here].
Janet asked – what did you notice? She said her dad was a clever man, but he began to forget things – her age for example. The bizarre behaviour came on later – this included taking his clothes off and getting wound up by things. He became aggressive and angry.
He hasn’t spoken since COVID and he doesn’t respond anymore. Janet recommend Playlist for Life (PfL) to provokes memories. There is more about PfL here.
Control is not an option
Another member said her mum is up and down and everything can change in 10 minutes. The daughter likes to be in control and that’s a challenge for her mum. Our member and the others attending recognised that trying to “control” someone with dementia is not a realistic option (however much you might want to). She was away for her birthday at the weekend and her son dealt with mum. She is very impressed with his management, keeping her calm. She doesn’t want to overload him as he is in a relationship and also cares for another relative.
Mum gets into a panic over things like bills, but likes the children and cards from friends, even though they have to find pictures of who they are.
The daughter has Lasting Power of attorney (LPA) and is going to register all the official stuff to her address, so mum just gets the nice bits.
She is much calmer at the moment- she is working with MIND on a 10 week course. She self referred. She is already looking forward, thinking to find solutions. She will tell the group useful things from the course at later meetings.
Going out and coming home
A long standing member says she is muddling along. Her step father lives in her mum’s house. Her mum has passed away. He has been able to get on a bus to go to Greenwich. The daughter gave him a ticket for the Curry Sark. He went on his own and had a good day. She goes round to see how he’s getting on. He is going for a pre-op check for a postponed hernia op next Monday. She is concerned about who will help him aft the op. His bed and a commode will have to be downstairs and his house is already full of stuff! There will have to be a discussion about the support needed carers etc. She was advised to alert the ward for a safe discharge
Another story of early onset
The male attendee this evening said his wife had memory issues before the diagnosis which took a long time by different specialists. The support was very poor. Now his wife’s language is poor and she can’t communicate, some days are better than others
They have a live in carer and she is fine with that. They have some additional support, which enables him to have some time for himself. He has had a few breaks away. He said – finding the right carer is important – you have to be comfortable with them and they have to be able to stimulate the dementia patient.
He is ok at the moment. There was no recognition from her when he came back from being away.
Working late again
Our regular 8pm joiner (we run a flexible meeting) said her dad had another episode and was down on the ground and unresponsive for 15 minutes. He was taken to Queen Elizabeth hospital on Friday. There was a lack of communication between departments. Her mum stayed with him all the time. On Sunday he became over stimulated (noise and lights) and he exploded hitting Mum and nurses. The daughter could her it on her phone, he was using a pillow to hit out. He was given a sedative. It was very traumatic for her mum. He was in a depressive state after that for days. The Doctors don’t know why it’s happening.
They are waiting for a letter from the Memory Clinic. They may discharge him as there is nothing more they can do.
He was weaker when he came home, particularly his balance and walking. He needs more care getting in an out of the bath and going to the bathroom He’s regaining strength, but not back to how he was before.
Social services contacted mum to say they could help, but mum doesn’t want that yet. She wants to do it for him. The daughter said mum is exhausted after the hospital time. Lots of stress. He has more happy moments after being in hospital, but you can’t mention hospital.
Janet advised planning gradually for the responsibility of it all, rather than wait for a crisis to happen. Sensitively drift the idea of support to her mum. Family carers need support too, thinking before it happens. Asking mum – what’s your thinking? What would make you want to change something? Planning for help and support would be a good thing.
Tatiana said even if mum says she would like an assessment it takes time. He would not be “taken away”. Social Services have to work with the family to explore all options and they try to keep people at home as long as possible. Care home cost more money, it takes weeks to do all this and there is a waiting list. If she is afraid of the outcome it would be better to plan ahead.
A carer needs to be aware that promises they make early on can be unachievable down the line. It the carer setting themselves up for guilt? What if they can’t look after their loved one? Realistically, they can say – I will do the best I can, but I may not be able to do this untill the end.
Long covid and caring
Our member who has had covid said he is feeling tired. He’s been chasing his sister’s pension and it is now going through. She came round to watch the football, but went on the computer with the volume up. He said she knows something is wrong, but not really what it is. She wasn’t eating properly, so they bought some frozen meals, so now she eating more regularly. His wife still has to make a distraction to check the fridge. The sister had a roast dinner with them, but said she was still hungry! They have contacted Nikki from BLG MIND and she says she’s ok with that.
Supporting someone with dementia is a learning experience for yourself.
Reflections 