wings and things

Making friends with dementia

on May 24, 2015

It is inevitable: one of these days, I will rush into Anthony’s room, plonk a kiss on his lips, sit down next to him with a grin, put my arm around his shoulder, and he will not know who I am.

In my PhD research and subsequent book about dementia – eons ago – I talked about how, no matter how nonsensical or confusing the person with dementia’s stories were, it was still beneficial to have those conversations, to participate in what I called ‘storying’.

Fast forward to now and working in the dementia cottage has been an absolute gift. I have a job, albeit part-time, in which my role is that of “Lifestyle Assistant”.

Over the last several months, as both a volunteer and employee at the nursing home where Anthony resides, I have become more and more enriched by the relationships I’ve formed with the residents in the dementia cottage. Partly this is due to putting into practice much of what I learned and believed all those years ago when I simultaneously worked as a nurse in a nursing home and embarked on my thesis.

This job has taught me so much, not just about dementia itself and how it affects people differently, but about how vital friendship is to those who have dementia. Common sense really but it is often assumed that if the person with dementia doesn’t recognise you, you may as well not bother visiting, conversing, relating to them. But why? That person with dementia still needs your friendship even if she or he doesn’t know who you are anymore.

On entering the dementia cottage, I am mostly unrecognised as someone any of these ten women have met before (every yesterday has usually been forgotten), but I am still made to feel welcome, and warmly greeted by those who can still speak. The first thing I have begun to do, during my 3-7pm shift, is to greet each of the ten women individually, either with words, or a hug, or a joke, or the offer of a wheelchair walk.

I realised the other day that the reason I love the job so much is simply due to the fact that these women have become my friends, so much so that I have begun to miss seeing them on my days off. Since I only work six four-hour shifts per fortnight, that’s a lot of missing! I love these women (despite the fact that Anthony has often told me that I throw the word “love” around a bit too freely!)

The point is this: my ten friends with dementia may not know who I am, but I know who they are. I’ve read their histories, learned their personalities, and have now figured out which activities individual people most enjoy.

Dementia can be a cruel, debilitating disease which renders the victim helpless in so many ways. People with dementia need friendship but those of us without dementia should consider the possibility that we also need their friendship.

It is inevitable: one of these days, I will rush into Anthony’s room, plonk a kiss on his lips, sit down next to him with a grin, put my arm around his shoulder, and he will not know who I am.

But I will know who he is and, if he asks, I will simply say, “I’m your best friend.”

24 responses to “Making friends with dementia

  1. wise words–but I will remember him–thank you for the lesson–you are truly a wise woman and I have learned a lot from you

  2. Tiny says:

    How beautiful, Julie. And deeply touching.

  3. susanpoozan says:

    It is very illuminating to read this post, thank you for putting your thoughts on paper, so to speak.

  4. So true, Julie. What you are doing is wonderful. ❤

  5. This post is absolutely glowing with the beauty of your heart. Every word shines, just like you.

    Thank you Julie. Your words touch my heart deeply.

  6. jensine says:

    how lovely to find light within such darkness and confusion … BIG HUG

  7. Vicki says:

    So right you are Julie.
    Whether dementia patients know who anyone is, is perhaps, irrelevant.

    Friendship is priceless. Companionship is priceless. Sharing & Caring is priceless.

    What is there in a name, anyway.

    When people begin to see the interdependence we all have on each other, that’s when they develop compassion and understanding of the very nature we all possess for tolerance and peace in the wider world too.

  8. I loved everything that you said in this post, every single word. Friendship is a gift to all parties involved. Hugs Jules 😀

  9. Rhonda says:

    You are an amazing woman and this is a beautiful message. Absolutely beautiful. And sorry Ants…but Jules, I love you. xoxo

  10. I learn so much from you Julie. ❤
    Diana xo

  11. tootlepedal says:

    This is a very interesting post with lots to think about after reading it.

  12. Amy says:

    What a wonderful story about the beauty of human connection without any strings attached.

  13. Yes, people tell themselves that since the person with dementia doesn’t recognize them, the visit has no purpose. There’s another factor that I found when it related to my mother… and some of her family; and that is that they also put of visiting because they didn’t want to remember our mother that way; they’d rather remember her the way ‘she was’…. I never judged them but when they told me I shouldn’t put myself through it etc etc. I said that for ‘me’ I needed to be there…. whether or not she knew me, or spoke;.. that I could talk to her, and just be there etc…. Everyone needs to know that there is someone who cares … who can give them a hug…or a touch; to feel important! Diane

  14. You are a rock star Julie.

  15. Terry says:

    I agree with your post. Whether we are mentally challenged, or brain disorders of any kind, we all can relate on our very own levels and the biggest thing each of us require and need is to know we are worthy. Big hugs dear friend

  16. I hear ya, you are so right, we know them we love them we remember those love ones as they were more then as they are now.

  17. Ann Koplow says:

    Absolutely beautiful post, Julie. Many thanks.

  18. lensgirl53 says:

    Julie, I start my day reading your post first. Today it touches me deeply to know how God uses you to be an ‘angel’ to those lovely folk with dementia. Right now we are personally dealing with my own mother’s dementia that has progressed to a point where she has become hard to manage by her ailing husband. She is now in the hands of the step daughter who has never hidden the fact that she hates my mother for ever marrying her father. They have been married 18 years. It is a very complicated and tenuous situation. I live 1,000 miles from my mother so it is not easy for me at this distance. While my brother looks into the legalities of the matter, we pray my mother will not be harmed by this woman. Oh how I wish we could find a “dementia cottage” nearby that has an angel like yourself who truly loves and cares for others!! I have said it before….your new friends do not know how blessed they are…or maybe they do. 😇

  19. dogdaz says:

    Your last line sums it up so well.

  20. ksbeth says:

    i love your ending and i read this after your ‘faulty’ post, which makes it all the more shocking.

  21. it is so wonderful that not only do they benefit from someone like you who truly understands and cares about them. it is so wonderful that you have a job where you feel good about what you are doing and care for the people that it is your job to watch over. too many people take jobs like that and just kind of disconnect, thinking it makes no difference.

    i can remember working on a unit with traumatic brain injuries (military). too many nurses just gave pills and seemed relieved to feel no need to connect with the patients. i was one of those that just sort of went along with whatever they wanted to talk about. now and then someone would regain their capacity for speech and one of the first things they would tell me is how much our conversations meant to them.

    i just want to say that when that day comes with your love you will handle it with grace and humor as you do most things! i am in awe of you and your depth of love for not just your family but for people like me. i thank you on behalf of us all.

    dear sweet julie i send you love and hugs xoxoxo

  22. Judith Post says:

    I just love your attitude and approach to life and dementia. Such a lovely way of looking at it.

  23. Being a caregiver to those with the cruel disease of dementia is rewarding as you have so beautifully showed us…and we are grateful that you care so much and make such connections. Keep up your great work…and keep your beautiful open heart shining. xo

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