We welcomed our lively group for another wide-ranging discussion at the Reflections Carers Support Group monthly meeting.
Looking for a care home
Several members said the pressures of being a family, living with someone with dementia and confined within their home for a long time, had created tensions, particularly when the loved one was clearly moving on in their dementia journey. One member told us that she thought it could be time to start looking for a care home for her mum. The carer was very stressed, she said her family were stressed and mum was stressed. She was concerned that a change would be bad for her mum, but something needed to happen. Unfortunately, even though we appear to be coming out of lock-down in many areas, viewing prospective care homes is still not possible at the moment. In the interim, the GP and Memory clinic are helping.
Visiting a care home
A group member told us how things had been improving. Her mum’s care home had advised her to stay away when the pandemic arrived. “It was just like pressing pause” and she was concerned her mum would forget her. However, they meet via FaceTime. She is now able to visit the home once a week and they speak, either in the garden, or through an open door. Mum remembers her and they enjoy a chat. She sends a letter with a memorable photo once a week, and a member of the care home staff reads it to mum. Everyone at the home has had 2 Covid tests and no one had the virus. Very soon the care home will allow two visits a week.
At this meeting, and at our Friendship Group, we were reminded that when English is not your first language, dementia can bring communication issues. You may try to express yourself, but be met with blank expressions. You might be speaking clearly and making perfect sense, but not in English. Or, you could be in a care home where few, if anyone, speaks the language you find most comfortable.
If you have a moment, you might be interested in this article from the “International Journal of Geriatric Psychiatry” [great title!]. It is worth persevering past the academic language (you may consider that the staff comments sometimes say more about them than the people they are dealing with).
Stress, rage and frustration
We regularly revisit the impact of stress on the mental and physical health of our carers. While carers may wear a smile, it often disguises what they are dealing with. Carers feel they should be able to cope, even when it would be unreasonable for anyone to cope with the issues they are facing on their own. It is not a sign of weakness to seek out help, it is a sign of strength.
Carers UK produced advice on “Coronavirus – protecting your mental wellbeing” which you can read here.
Alzheimer’s Research UK produced a report in 2015 “Dementia in the Family: The impact on carers”. You can read more here.
The slightly unusual, becomes usual
Some comments from today’s group: “Dad thinks different rooms are different houses”. “We go out for a walk every day – she hates it”. “If she is not interested, she pretends she’s is asleep”. “She was agoraphobic, now I’m concerned she wants to go out all the time”.
Sadly, we say goodbye to two more relatives of our carers who have passed away. One of the carers came to the group and we were pleased to hear her story. We send our best wishes to everyone in these difficult times.
Peter’s piece: The Alzheimer’s Show – Admiral nurse service
Janet and I attended the first webinar of this year’s Alzheimer’s Show run by the nurses. Some of the key points they made were:
- They have a helpline (see below) which anyone can use (you don’t need to have an Admiral Nurse in your area).
- If the line is busy, leave a message, they aim to get back to you within 24 hours.
- Memory Clinics across the country are reporting a 6 month delay in seeing people (Janet is checking with our local Oxlea’s service).
- People with dementia were left off the government’s list of vulnerable people.
- Family members of people with dementia were not classified as “key workers”.
- Care homes were starting to accept new residents, but they would need to self isolate for 14 days.
- Day Centres had not announced when they would reopen. When they did, numbers attending would need to be reduced, with steps taken to minimise risk of infection.
There are lots more free webinars coming up from The Alzheimer’s Show. To find our more see here. If you have an interest in a topic, it is worth registering, as even if you are not able to attend, they will send you a link to a recording of the webinar.