Discussing my dad’s journey with dementia often brings a fascinating insight into people’s perceptions of the life I had during my father’s nine years in care homes. One reoccurring theme is the assumption that being part of dad’s life during those years was unbearably hard, and that visiting him must have been something I found extremely difficult.
In fact the truth is somewhat different. Aside from the last few months, when we had what became insurmountable problems at the home (as I detailed here) that totally changed the atmosphere and experience, the time we spent with dad was extensive, precious and, now that he has passed away, represents cherished memories that we will hold forever.
I always found comfort, rather than distress, in visiting dad, and actually struggled the most when we were apart and I did not know what was happening with him. Then I would wonder if he needed anything, was feeling lonely, poorly, happy or sad, and whether the care he was receiving was of the standard we expected. When he could still hold a conversation we could always chat on the phone if I could not visit, but when I wanted to be updated on how he was I relied on the staff to answer my questions. Having family members visit at different times helped to communicate news on dad, but I always missed him and looked forward to seeing him, regardless of how difficult a visit could be.
When someone with dementia is exhibiting challenging behaviour, being aggressive physically or verbally, or in the case of the total opposite of that, being unresponsive and not even looking at you, talking to you, or you feel they are looking straight through you, it can be demoralising to continually put yourself through that experience and you can be left wondering how to cope.
For some people visiting is a choice, for others it is a necessity, and it is not for anyone to judge a person on how they respond to the situation that they find themselves in. Some relatives cannot handle seeing a loved one deteriorate, whilst others question the ‘point’ of visiting someone if they do not know who you are, are asking the same questions repeatedly, and forget that you have been there with them the moment you have left. I always looked at it in a different way however: if for just one minute of my visit I made a difference then I brought something to my dad’s life that he would not have had without me there. Often you may feel you never had that minute, but it is about whether your loved one has.
For me, visiting a friend or family member with dementia is what you make it. If you go expecting them to react to you in order to spark the visit, you will make that visit harder for you both. If you employ a policy of interaction, rather than just reaction, you have a greater chance of feeling you have done something worthwhile. I always liked to be very hands-on, feeding or shaving dad, doing his hair and nails, singing with him or reading books, checking his clothes, mending them and sewing in name tapes, or taking him outside to the garden. Having that level of involvement in dad’s care, keeping busy and chatting whilst I did things, kept most visits light and cheerful and created a happy atmosphere.
It is very common to feel that you are visiting a person that you do not know anymore. Accepting the changes and remaining as positive as possible, at least in front of your loved one, is a tough but necessary art to learn. There is a saying that ‘Strangers are only friends who haven’t met yet’. Visiting someone you have known and loved for years, possibly all of your life, and being treated as a stranger can drive the most devoted relative away, but your role is to make friends with them over and over again.
Against a backdrop of feeling like you are grieving for your loved one, you may be more inclined to cry than be friendly and happy. Many tears were shed over the years by quietly retreating to my dad’s en-suite bathroom for a moment of reflection, but I always firmly believed that I did not want to upset him by allowing him to see me distressed and wondering why I was crying.
Occasionally that resolve did slip, even the best coping strategies fail occasionally, but on the whole going to see my dad was about visiting him, we were not visiting his dementia. We ate together, had copious cups of tea, listened to music, watched sport or went out and about – all the things we did as a family during my childhood. Back then it was unthinkable that he would end up living in a communal establishment, but when that became a reality our involvement was what stopped it being an institutionalised environment and made it his home. The result? Visiting was easier and crucially, dad was happier; a classic example of time well spent.
Until next time…