Being Dementia Friendly: Striving to Live Well with Dementia

Being Dementia Friendly: Striving to Live Well with Dementia

By C. Angela Burrow

British actors Timothy and Prunella are celebrating 60 years of marriage, including about 20 years, living with Pru’s diagnosis of vascular dementia. They have been very selfless in sharing their story and their commitment to deal with the disease in ‘the most positive and loving way’. In fact Tim has written a book ‘Pru and Me’ which charts their love story and, in places, funny account of dealing with Pru’s dementia together.  He hopes that sharing their experiences and the ways they have adjusted might be beneficial to others in a similar situation.

The early years were challenging until they learnt to accept and adapt to their situation. Tim would be nervous about accepting invitations as Pru’s social skills were challenged. She would tell the same joke or anecdote several times. Often they would both become frustrated as she would ask the same question repeatedly. She would remember asking but then would not recall the answer causing repetition and frustration. Interestingly, she learnt to accept her own challenges, with time.

Tim developed the approach ‘we just live day by day’ & ‘recognise the positives’.

Tim’s Advice:

• Keep doing the things that make you happy. For them, it is boating. She cannot help with navigating or steering these days but she loves to watch ducks and other wildlife on the waterways.
• Stay busy: They keep on doing the things that have always made  them happy and fulfilled as often as they possibly can. They still go to concerts and museums even though Pru doesn’t remember anything about it afterwards.
• Keep on communicating. It is important for them to have something to talk about. Tim says they talk to each other even though Pru does not hear very well and might forget what he has said in a matter of moments.
• Look after yourself, too. This can look different for each person. Pru naps during the day and Tim has learnt to use that time for his respite. The naps and time apart avoid the ‘familiarity breeds contempt’ situations that can happen in caregiving.
• Be patient. Tim shares that, as a carer, the part that can be the most challenging is remaining patient. He does not always get it right but shares that you must always try. He tries to look at things form Pru’s perspective – What might she be thinking? It is not always easy to predict but he says, “Just keep trying”, ask for help, and never give up.

A message from Leslie Schwamberger, the daughter of Doris Mock aka ‘The Queen’

“Dementia is a heartbreaking journey for families to care for a loved one as they watch the devastating effects it can cause. Growing up I did not have the most loving relationship with my Mom. She was not affectionate and while I knew she loved me, she rarely if ever, said it. Dementia brought a gift of closeness with Mom that I had always longed for. It was as if the walls she kept up from showing her feelings were let down and she expressed love and affection in dementia she could not share before.  When she would see me coming in to visit her after she forgot my name her face would light up and she would say, ‘Oh, here comes GOOD’ followed by outstretched arms for the best hugs! These memories bring me such joy and peace as they healed so many emotions that I had carried. For that I am eternally grateful.”

Final word from Harry Urban who is living with dementia

“Help me hold on to what I have. Living with dementia, my feet slip out from under me and I lose another part of my life. We need you to help us hold on to what we still have and not try to fix us. We don’t want “fixin” we want your support, so we don’t fall over the edge. I see the poorest of families that are struggling with life that are happy and glad for what they have. We can also be happy with our struggles if we think about what we still have and not what we lost. We reach a point in our life when we stop reaching for the things we don’t have and start to enjoy the life we are living. We find inner peace and realize living with dementia isn’t that bad.”