Dementia Advocate and carer Imelda Gilmore reflects on some of the positives of dementia and the opportunities that still exist for making new memories in her latest blog post.
“How can this journey of dementia, in all its forms, have anything positive about it? As we look at someone who has advanced dementia, we say, “It’s horrible; it robs the person of dignity and the ability to communicate in relationships and robs the person’s loved ones of the ability to connect.”
Yes, all of that is true but I venture to say that walking with our loved one in the late stages of dementia can also result in a great deal that really is positive. I come from a perspective of marriage, but I’m pretty sure you can translate what I’m saying into your relationship with the person you love, parent, sibling child, grandparent.
The first thing I had to realise, as Graham moved into the advanced stage of the disease, was that everything about him as a person was “still there”; he was still Graham, the man I married, with whom I raised a family and lived a life of deep love and commitment. However, Graham was no longer able to express his personality or his relationship with me and others in the way that was familiar to us. So how can there be anything positive, you ask?
When we were first courting, getting to know each other, I would look for the signs that said he wanted to be with me … a look from across the room … the way he made a comment …. there were the opportunities I would look for to sit close to him … or to touch his hand … or to brush his arm. The things that drew us to become more familiar with each other physically, to fall in love, to appreciate every moment we had together. I began to discover that exactly the same type of things we experienced then now became the source of creating new memories.
When we’ve been married for years, having the opportunity for touch and talking and sharing, being in each other’s company so much, we become very comfortable and familiar with these things and, as they are part of “normal” life, they just become part of who we are together. So when we come to a time when one of us is no longer able to participate on this level in our relationship, the sense of loss is painful, but it need not be all-consuming. This is the time when we can start to look for the small gift that can be a touch or a word or a look and, more importantly, it can create a memory.
Even just in the closeness of sitting together, getting a smile, being able to touch his arm to calm him, there is precious connection. A startling thing happened one day when I needed to move him into position to get him onto his bed. Nothing was working, so I had a thought and said: “Let’s dance.” (We used to do ballroom dancing in our years.) Immediately, he stood tall and straight, started humming, held me gently, gave me a look of love and started moving his feet. This lasted no more than 30 seconds, then the moment was gone; all recognition was gone – but what a memory that created! And it achieved the movement I needed to get him onto the bed.
There are often times when something that happens can have one of two effects: it can deepen our sadness and cause us to dwell on what we have lost (and yes, we have lost so much), or we can use the situation to bring a smile. A story, and it’s certainly not the only one, comes to mind from when Graham was still able to walk. He had been in the nursing home for about two years at this stage and had long since been unaware of my relationship with him. As I came in the front door of the home, Graham was walking up the hall with his favourite male Assistant in Nursing (AIN). He hadn’t “seen” me, but the AIN stopped when they got to me and I took Graham’s hand.
The AIN said, “Graham, look, who’s got you now?”
A blank response from Graham.
“It’s your wife.”
Again a blank response.
“Graham, look, who is it?”
Graham looked down at me, then looked back up at the AIN and said, “It’s a short one.”
Well, the AIN and I simply cracked up laughing.
Yes, it was incredibly sad that after 45 years of marriage, the man I love didn’t remember that we were husband and wife, but I became aware that there was nothing I could do to change that: no amount of explanation or Marriage Certificates or pictures could convince (although they could confuse and worry him). So it became part of “the new normal”. I was still Graham’s wife and deeply in love with him; he was no longer able to express the love or the knowledge of the relationship we had, but I was still able to honour him. So, having an incident happen which caused us to be able to laugh did two things: it had the happiness endorphins flowing and it refocused the sadness.
There’s also an amazing fact that often a person may retain their sense of humour. My brother-in-law was always able to get a laugh out of Graham when he visited with my sister: Graham would have no idea of the gist of the conversation and might say some words that had a meaning we couldn’t understand, but they would both be sitting there chuckling – again, sending good endorphins to create a brief moment of emotional wellbeing.
Now that my journey with Graham through his disease has ended, the beautiful thing is that the memories I stored of all the precious moments are a great comfort to me now. Yes, they also make my heart ache, but I will always treasure them as, strangely, the gift that was given to me through dementia.
I read this comment today (abridged), and I think it speaks volumes for how we can be comforted and encouraged by looking for the things that matter with our loved one through each new day that we’re given, especially in walking this dementia journey.
“You see, every day that we wake up alive in this world can be a beautiful day if we make it so. It doesn’t matter if our lives are full of struggles, pains, and frustrations. Each day we are given a chance and a choice to make it a beautiful day. Make today a beautiful day then. Give the day all the warmth within you. Share your smile with others. Give a hug or an encouraging word to a struggling soul. Be kind to those who need your kindness. Offer a helping hand to a hurting heart. Do what you can to make this world a better and more beautiful place. May all of your days be beautiful ones. May they be full of love, laughter, and light. May they help to bring you closer to God and this world closer to Heaven.” http://www.sermonillustrator.org/
Thank you Imelda So true. Very similar story to my own with my wife of 55years. Every day there are positives. We only have to choose to recognise and enjoy them.
This is an echo of the story my husband Neville and I shared over his long journey with dementia. However, on his last day in late May 2018, Neville looked at me quite alert to say: "You are my divine source of love". They were his last words to anyone; they were worth the tears!
Just beautiful dear Imelda..and to know you,(through our DFC project) for me, is a gift in itself. My mother, in her 7th year of living with dementia, started to say"Life is beautiful-if you know how to live it"".What wisdom! Danijela
This is a replica of my Journey with my husband David who passed in May this year we had been married 47 yrs but managed a lot of new memories in the last couple of years, me knowing who he was he knew I was special to him but could not converse but just gave his loving look. I am so thankful for choosing to spend time with him and glimpsing those special looks.
I am my wonderful wife’s Mark. We have been married for 38 years and together for 42. I have early onset Alzheimer’s , vascular and Frontotemporal temporal dementia. My biggest concern is leaving Robyn and being a burden on her. Your words have been very helpful to me.