" My best friend, my companion, my confidante and my lover was slipping away and it hurt like crazy. "
Where did you go?

One of the most difficult aspects of the effects of dementia, no matter what the name of the disease, is that the person we’ve known for all our lives, or all our married lives, begins to change in the way they relate to us.

As a still relatively young married couple just past 60, Graham and I had a deeply loving relationship which had grown to maturity over almost 40 years of marriage. There is a very comfortable, familiar, secure, intimate companionship which I’m sure many couples find at this stage. The “comfortable old shoe” mentality of being free to be ourselves, while still seeking to reach for goals and to impact our society with good, meant that we each knew where the other stood and more or less what to expect in our day-to-day relationship.

During the early progress of the disease, when Graham was around 61, I gradually became aware that the way we were relating to each other was changing. In a fairly short period of time, it occurred to me that I needed to start to “manage” Graham’s activities of normal everyday living; the key for me was, rather than causing him stress by telling him he needed to do something which was now much more difficult for him to work out, I moved into a role of making things easier. I would put the clothes out for him to wear; I would set up the basin and equipment for shaving and unobtrusively monitor him through the process. I would take his clothes while he was in the shower and replace them with clean ones.

And so gradually, almost imperceptibly, our relationship was moving from equal partners in a marriage to a realisation that I was becoming the parent figure in Graham’s life. I think what really helped me to begin to accept this new focus was the fact that we’d learned that someone living with Alzheimer’s disease regresses through the stages of life, so in Graham’s functionality and ability to relate to others, he was returning to childhood; a child needs an adult figure for security, so his ability to relate to me became like that of a trusting child.

Was it easy to accept this? No – my best friend, my companion, my confidante and my lover was slipping away and it hurt like crazy. Things I took for granted – like the way he would fall into step beside me and slip his hand into mine: until that’s no longer the norm, you have no idea how much you miss it.

The things he would say could often be difficult to hear from the man I loved and they were sometimes even inappropriate. His interaction with other people also changed, where he would greet anyone and everyone in the street like a close friend, stopping and chatting many times on a walk. When he would go out to walk the dog, instead of a goodbye kiss, there wasn’t even a “goodbye”; yet all our lives together we never left each other without a kiss. It was crucial for me during this phase of our journey that I always, always remembered that nothing he did or said was done deliberately to hurt me – it wasn’t personal, it was just the disease robbing him of the way we had related to each other over all the years of our marriage. I have to say that many times alone I cried and I found comfort in prayer.

Young onset Alzheimer’s disease often presents a sudden downturn stage which can take you completely by surprise and is breathtaking in its effect on the person’s ability to function or to relate normally to anyone; as with Graham, this can signal the sign of the classic “rapid decline” stage. When the person whom you know so well appears, almost overnight, to turn into “someone else”, this is an immensely stressful and worrying experience. Once again, I learned to try to see this through Graham’s eyes and to work with the bad moments, hours or days. I found it a key focus to keep trying to see things “in his world”, to look for the triggers that would cause him to become stressed and to try to avoid them. These included such things as “too many instructions”, all the way to physical distresses, such as a UTI, or constipation, or even a runny nose and not being able to work out what the problem was and how to fix it (what is a hanky? what do I do with it? how to I stop my nose running?).

I have to say, my journey was made easier by acting out of my deep love for my husband and realising that I had a tremendous privilege in being allowed to gently guide him safely through each stage, regardless of what I was losing in terms of our relationship. I didn’t for one moment neglect my wellbeing, taking breaks and rests, etc, but for this time, this journey, which I knew was not expected to be very long, I focused on Graham’s needs, looked after his best interests. Not surprisingly, in the end I was the one who was the beneficiary: because I knew deep in my heart that I had treated him, despite shifting relationship parameters, with the deepest respect and love that I could give him, hopefully making his journey a little less painful.

 Posted: August 2nd, 2017
Discussion

Leanne said:

Please know you are not alone, Monica. If ever you need any information, advice or support from our dementia advisors and counsellors, they're here for you. Contact our free National Dementia Helpline on 1800 100 500 Monday – Friday, 9am-5pm. All the best Leanne – The Dementia Daily team

Monica said:

Thank you for your honesty. I am 61 and my husband is 70 with Alzheimers. I feel I have gone from being a wife to a carer and it is quite hard at times. Definitely a shift in roles.

Gail said:

Very similar to my husband Allen and myself on our journey...thank you so much for sharing. It is such a trying time but like you I too feel blessed that I am the one their for him.

Aurora said:

Thank you Imelda for sharing your story of courage, strength and faith. The journey is truly heartbreaking as we see the light fade. God bless you much love and peace. ❤️

john said:

Thanks for helping me see how to ap proach my wife's dementia

Valerie said:

That is respectfully and movingly put Imelda -- Beautiful photo too -Thanks for sharing with such insight

Janine said:

Hope you are finding happiness and peace

Joan said:

This describes my 62 year old husband to a tee.I miss him so much! Thank you Imelda for sharing!

Sharon said:

Love and devotion and care for all the wonderful years you have spent together. We have been married 47 years. I feel your pain. It's such a hard journey.

Evelaine said:

Information such as this helps along the way as all the time you are endeavouring to maintain their self esteem and reduce their feelings of uselessness. You ache with sadness and loss- but try and remember it is worse for them as they are losing their life, their togetherness and their personality.

Rod said:

Well done Imelda - bless you

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