Moving to a new house
As the challenges of Ebbe’s illness grew progressively worse, the couple made a difficult decision to sell their home. The couple wanted to move closer to their daughter, son-in-law and grandchildren.
After the move, it became necessary for Ebbe to receive additional support and for Barthe to have some help with the increasing caring responsibilities for her husband. Ebbe was given a place in a respite care facility that specialises in caring for people with dementia. While this was a difficult transition initially, after the first few visits, Ebbe settled in very well and was happy. The move also gave Barthe the time she needed to be herself and get out of the house.
Managing everyday life
Ebbe still wanted to help in everyday life – for example, setting the table. But he was annoyed by the fact that he couldn't remember where things were. To support her husband, Barthe labelled the kitchen cupboards with numbers so she could easily direct Ebbe and enable him to still feel some normality.
For many years of her normal working life, Barthe worked a lot with dementia equipment. She therefore knew of a stove guard that can turn off the stove if you forget. She was therefore given a stove guard so that no accidents occurred if the stove was not turned off. With the Stove Guard installed, the stove could be used as before, so no new routines had to be learned. Something that becomes more difficult the older you get – and especially the more advanced the dementia disease is.
Ebbe continued to walk the couple’s dog every day, but gradually it was the dog that walked him. He could no longer find his way.
Eventually, the effects of Ebbe’s dementia meant he started to have difficulties with using the bathroom and Barthe had to convince him it was time to use specialist underwear. Sleep was also affected, and Barther found her husband no longer slept at night but took short naps instead. Often, he would wake her throughout the night and start conversations about all sorts of things that he had just been thinking about. At this stage it became necessary to increase the respite care from two nights to three nights per week.
As other everyday activities became impacted, such as switching on the TV, the caring responsibilities for Barthe increased and the couple became more isolated, only seeing each other which Barthe felt made her husband bored.
Due to the development of Ebbe’s illness, Barthe was hardly out of the house for two years.
The hardest decision
In 2014, as Ebbe’s condition worsened, Barthe had to assess how much she could handle. She spoke to friends and specialist support agencies about the actions she could take to ensure Ebbe received the care he needed. There were three care home options for Ebbe, and while this was the hardest decision Barthe had ever made, she decided that she must give her husband the care he needs in a nursing home setting.
Barthe and her support team were very careful with moving Ebbe’s furniture and belongings into his new home. It was important that Ebbe was familiar with some elements of his surroundings. Friends helped with the move to provide even more stability and support with the transition.
On the day that Ebbe moved, he was welcomed in such a way that Barthe felt like she quickly became redundant. However, she was very careful to ensure this new living arrangement felt like their home, together. Barthe says: “He thinks we still live together, so I never say ‘goodbye’ or ‘hello’. At most, I have to go shopping, and then he quickly forgets about me again – and suddenly I'm here again. He should not have the feeling that I am leaving him".
Barthe told us: "Of course. He must feel his best in his final days with dementia. I put a lot of effort into taking care of him, but also of myself. Because if I break, I can't be for him. And Ebbe has been a great man for me. My best friend and husband. We've known each other for 37 years".
Tunstall would like to extend our deepest gratitude for Barthe Risom Holst and her husband Ebbe Holst for sharing this personal story with us.
