“It helps to have a little raw gallows’ humour”

A few years ago, Agneta began to notice that her mother Eva was starting to behave differently. When she and her sister were due to visit, Eva laid the table for considerably more guests; guests who lived on the balcony.

“She was furious that she did not have access to her own balcony. We realised that she had started hallucinating.”

Agneta-Scharp-3

Photo: Emma Danielsson

“Mum also became frightened of the TV as she thought what it showed was actually happening. This led to flight behaviour. On one occasion, the neighbours found her out in the stairwell dressed only in a nightdress.” Dementia tests were carried out and it turned out that Eva had dementia with Lewy bodies. This explained the visual hallucinations and memory disruption.

Agneta and her sister realised that it was time for their Mum, who was then just over 80, to move out of her flat in Kvarnbergsplan to a home.

“My sister called the assistance case officer and talked to Mum, who did not want to move at first. But Mum had a friend who lived in Västergården, so we warned her we would be coming and then we went there together. Her friend was so positive about Västergården that Mum changed her mind. She said: “I understand that are you’re worried about me, so I’ll do what you suggest”.

Once the decision had been made, a place was arranged quickly. “A piece of cake”, as Agneta put it.

“The fact that dementia tests had been carried out was largely the reason why it was so easy, as people who have been diagnosed get a place in a home more easily.”

Agneta’s Mum moved in to Västergården just before Christmas 2013.

“I really mourn the loss of my Mum to her illness. At the same time, I am glad that she was healthy for so long.”

Agneta talks about her Mum with great warmth and describes her as a very independent person. Apart from a few years as a housewife in the 60s, she always worked.

“My Dad was a sea captain, so he was away for several months at a time. Mum had to do all the practical things herself. She looked after us, paid the bills and filled the car… she probably had a better handle on things than Dad did!”

Agneta gives the impression of being very close to her Mum, and says that they did a lot of very fun things together over the years. These included excursions, trips, meals in restaurants and parties. She also says that her Mum has a great sense of humour.

“Mum was extremely humorous, and remains so. I know that she is well-liked in Västergården because she is an easy person to get on with. She is also quite mischievous.”

Agneta runs Trosa Stadshotell and when her Mum Eva was fitter, she helped out sometimes, for example by polishing silver.

“She would say things like “this is where the elderly slave away”, but with a twinkle in her eye.”

What does support for relatives mean to you?

“I would say that my sister gives me support. We are good together. When Mum got worse and it was time to do something about it, we both felt that we were riding roughshod over her. It was rather unpleasant, but we had no alternative. It is great to know that we can support each other, particularly in such situations.”

Agneta feels that her Mum is in good hands, which also helps.

“For me as a relative, it helps that I have good contact with Västergården, with both the manager and our contact there. Mum is happy. And it’s about her. She is best living in Västergården and not with me. I can imagine that it must be hell if a relative is in a bad place. Mum is one of the people I care most about.”

Where do you get your energy?

“I walk in the woods with my dogs or take exercise. Sometimes, when I need a change of scene, I go up to Stockholm. To have some fun, relax and laugh a little.”

Agneta also talks about the importance of being positive and accepting that things are as they are.

“It’s important to see opportunities instead of negative things. That makes everything much easier. And if your next of kin has dementia, I believe it’s good to continue to treat them as before, as far as is possible. When I talk to Mum, it’s sometimes just a chaos of words, no logic anywhere. But I have to see it for what it is and accept that’s how things are. It helps to have a little gallows’ humour to cope with the situation. Mum has it and Dad had it too, so it’s in the family.”

Text: Emma Danielsson