Enabling a person with dementia to stay at home: a story of live-in care

Martin cares for his wife, Geraldine, who was diagnosed with Alzheimer’s ten years ago at the age of 61. She lives at home with Martin helped by two live-in carers who each work for two weeks at a time. This has proved to be an effective care approach for Geraldine. Martin believes that Geraldine will be able to stay at home until the end of her life and die peacefully at home. 

I asked Martin how he and Geraldine had made the decision to have live-in care. Martin’s reply was that the decision was really made for them as it happened in response to a crisis when Geraldine became frightened of being at home and was repeatedly heading out of the house and walking the streets, he presumes, to find a safer place to be. Having a chronic condition himself, Martin couldn’t keep up with her. For her own safety, a solution needed to be found, which is when the first live-in carer arrived.

“I was worried that Geraldine wouldn’t accept a carer” says Martin. “We had never talked about how things would be when her dementia got worse, and she was still very capable at that time”. However, Geraldine accepted the carer and immediately struck up a bond, helping to alleviate the pressure of the situation. This gave Martin confidence that the immediate difficulties could be overcome. In the early days, the live-in carers spent time walking with Geraldine. Whenever she was distressed, they would walk, until Geraldine felt comfortable about coming home again.  This would often happen several times each day.

As time has passed and Geraldine’s condition has deteriorated, live-in carers have become a welcome part of family life. Continuity has helped to maintain relationships and stability. Live-in care has worked so well that Martin cannot imagine a reason why it might now break down. Geraldine is still only 72 and has no other known conditions that are life-threatening. She is now unable to weight-bear and she sleeps for most of the day. She occasionally speaks legible words and sometimes smiles or frowns or winces, showing that she still has feelings and continues to function at some level. The live-in carers take her out for walks in a wheelchair and she is hoisted into the shower every day. Geraldine’s quality of life is as good as it can be. Martin feels that he has left no stone unturned in his efforts to meet her needs. 

So, what makes this approach work? What advice can Martin offer for families considering live-in care?

The ‘rules’ as Martin calls them are as follows:

1. Include live-in carers in everyday activities as if they part of your family. Treat carers in the same way that you would a family member, with the same facilities and home comforts and freedoms. Think about what would make them feel at home, recognising that they are living in your home, not their own home.
2. Never take your carers for granted. Always say ‘thank you’ and show appreciation for what they are doing.
3. Always value their opinions and ideas. Carers have experience in the role of caring and often will approach situations from a different perspective to you. Value their creativity, resourcefulness and resilience. Regard them as partners in the care of your loved one.
4. Set clear ground rules. Think about what is acceptable to you in terms of ‘house rules’ and make your expectations clear from the outset; but also, be prepared to be flexible and accommodate individual carer’s particular circumstances, bearing in mind they might have family demands of their own, and family members will not be nearby. 

As Geraldine’s primary carer, Martin has tried to anticipate future changes in her condition, and her commensurate needs, ahead of time. “An example of this is the walk-in shower that we installed well before we needed it, and that has been a godsend, we use it everyday now” reflected Martin. “And the stairlift. We used that for only 3 months, but, in that time, it proved invaluable. You have to be prepared to experiment and accept that some things you try won’t work”. 

Martin has been caring for Geraldine now for 10+ years and it hasn’t been easy. But he doesn’t regret his decisions at all. He says that it’s his greatest life achievement. “Being a carer means that you have to re-prioritise everything in your life. The most overwhelming priority for me, every day, is to prevent Geraldine from experiencing distress. I will do anything to avoid that”. Martin doesn’t know how the future will turn out for him. “I do think about what life will be like after Geraldine has died. It feels a daunting prospect. I cannot imagine what I shall do. I’ll just have to see when I get there. I am not going to worry about a future that I know nothing about as yet”. One thing he is sure of, he has given caring for Geraldine ‘everything’, and he believes that Geraldine would approve if she could look in on what is happening now. These thoughts will undoubtedly help him with his journey to recovery in grief.