Anthony and Margaret enjoying an ice cream together

I hate the word Dementia

Anthony from Manchester is the main carer for his Mother, Margaret who has vascular dementia. He says, “I hate the word Dementia”. It is a cruel disease. His Mum often says, “I have this thing in my head.” Pointing to her head, she knows something is wrong.

Anthony and his siblings don’t want his Mum to be alone so there is a family rota to ensure this. His siblings – those that live nearby – try to cover a day each and Anthony spends Sundays and Mondays with her. He also calls in to see his Mum during the week. He tries to give her a sense of independence although taking her to collect her pension and pay her bills is difficult. Using the cash point is no longer an option. Anthony helps her with this week in, week out.

Condensed his full-time hours

Anthony works full-time as a Cancer Research Nurse at The Christie NHS Foundations Trust and has done so for 22 years. He loves it and they have been very supportive and understanding as his caring role has evolved over the years. He has now condensed his full-time hours into four days. This enables him to spend more time with his Mum giving her the full-time help and support she needs. Managing her care package and the agencies that support her, applying blister packs for her medications, buying makeup, clothes, shopping and household duties are everyday things for Anthony. Applying creams for her psoriasis and answering endless practical questions from the carer agency about his Mum’s care are also the norm.

It’s hard to switch off

There are many frustrations – loneliness and not much of a social life, for example. His idea of a great Saturday is catching up with his sleep and a quiet evening in watching Netflix. He says the support for unpaid carers in Great Manchester is great. He says he’s very lucky. If anything, it’s targeting those not working. So events and gatherings – local walks, zoom carer training sessions – are usually during the working day. It means that he can’t join in many of them but enjoys getting involved on Mondays – the day he has created free each week by working longer hours. On Mondays, he takes his Mum to the “Together Dementia Support group” for some group activities and enjoys getting involved in a Carers Support Group on zoom once a month.

My stay in Bath was pure escapism

Whenever Anthony tries to have a break away or holiday it causes him a lot of anxiety not knowing who will step in to support his Mum as everyone else seems to be “busy with their own lives”. Anthony finds it frustrating but did enjoy a break at Kingham Cottage in June of this year and and has booked again for next year. He invited his best friend, Marina for the first trip and his sister for the second. Marina had grown up in Bath so had many memories to relive. From the moment they arrived, Anthony said it was lovely. The cottage was cozy and had a very warm and homely feeling. It felt like a weight had been lifted from his shoulders just to be able to get away.

Buying an ice cream whilst walking through the City of Bath, going to the pub for a bite to eat, and going to M&S to buy a buffet of treats to eat at the cottage – are all things Anthony enjoyed doing whilst staying at Kingham Cottage.

Pub in the Park

During his stay in June, After Umbrage was gifted free tickets to the community event called Pub in the Park. They decided to have a look at the beer tents, street food stalls, and entertainment. They said it was brilliant fun. The happy atmosphere included dancing and live DJs too. It all added to the therapeutic effect of staying at the retreat with the gorgeous weather too.

It was a full-on few days and he enjoyed catching up with Marina. Simply spending time together and enjoying the freedom. They even managed to cram in a short boat trip.  It was such a nice time and a positive experience.

Margaret getting married.
Margaret will sometimes forget to add the tea bag to make a cup of tea

It’s heartbreaking to witness. Margaret is a very outgoing friendly lady originally from Cork in Ireland. She has always been a lively, sociable woman. She’s a happy person now and loves a good breakfast. Preferably with bacon and sausage. She says she feels loved by all her family and Anthony would never want her to go into a nursing home. But it’s hard and very sad. ‘I hate the word dementia”, he says again. That said, she does still enjoy doing the daily crosswords – of a fashion. Perhaps with a few creative additions.

Anthony becomes an Ambassador for After Umbrage

Anthony has been able to share our details with fellow carers and with the health professionals in his world. We’ve tried to make this easy for him because of his hectic schedule. He shares our monthly digital newsletter with colleagues, has added to our referral network by spreading the word, and lastly, is buying an Umbrage teddy bear. Umbrage teddy bears will soon be available to buy on our website. It’s a great way to help us raise awareness and to raise much-needed funds. Here are some other ways being an Ambassador can be easy.

We thank Anthony for devoting time to us to share his story. He’s interested in helping to educate readers about the role of being a carer and we hope this is a small step in that direction. We wish Anthony, and all of Margaret’s family well.