I Remember You - Being Lovingly Present through Dementia

After my father Norman passed away on September 13th 2014, it started to become obvious that he and my mother Norma (yes that is their real names – cute isn’t it?) had been doing a pretty good job at covering up the signs of what we as a family now know, to be the early signs of dementia in my mother.

As a couple they were fiercely independent and it took us all by surprise when my father agreed to move into a supported village for the elderly. He had been seriously ill for 19 months and we saw it as a sign that he was getting ready to die. He did die, less than three weeks later. Seems he’d been waiting to know mum was more securely looked after and closer to family before he left us. Bless him.

At the time mum was pretty confused on occasions, she kept loosing and misplacing things and seemed quite’ lost’, but of course she had been under a lot of stress as my father’s 24 hours a day 7 days a week carer during his long illness, and we all thought she was suffering from sleep deprivation and stress, and that it would sort itself out over the next few months.

It didn’t. It slowly but steadily became worse and we realised as a family that she needed assessment and as expected the diagnosis came back as dementia.

One of the distinguishing factors that can point to dementia, is not just forgetting the name of something , but forgetting what that something is for. For example, we might temporarily forget the name of a fork, but when we forget what the fork is used for, or we call it a balloon, then these signs should not be ignored. Seek help and seek a correct diagnosis. Mum started saying that the temperature of the cars going past her on the road was too high – what she meant was that their speed was too fast.

Although my mother was at the time in her early 80’s, she was physically very fit and healthy and it was a blow to all of us that it was obvious that her independence was at threat. It was scary and sad that in many ways we were also losing our mother.

As the months went by and we put services into place to assist her, it was becoming more and more obvious that she had actually been suffering a lot longer than any of us realised. Dad was the independent one and very much directed mum, even in everyday life. We are not sure when this actually started. It seems that little things were easy to miss, easily covered up or explained away. Most visits from family were expected so there was time for them to set things straight in readiness – a cuppa on the table, being greeted at the door, the house tidy and eagerness to hear news. It was only when some unexpected drop-ins showed evidence that everything was not OK that we began to realise what was going on. We found raw sausages in the bathroom cupboard, toilet paper under the kitchen sink, apples in the crockery draw and mum had a lot of trouble locating things when unexpectedly needed – like her purse or where the saucepans were kept. We started to notice she had not been showering and when questioned, she would say it was because she couldn’t work the new shower that we had put in to assist with dad’s care. We started labelling things – on/off, hot/cold, but even that didn’t seem to help.

Dealing with dementia as a family can be very interesting to navigate. Let me say straight up that I feel extremely blessed that we as a family have gotten closer since dad’s passing and mum’s need for extra care. Decisions are made mutually – guided very well by my brother and his wife who live just around the corner from mum and are very much part of her daily extended care. She lives in South Australia and I have to say the system has been marvellous in supporting her ever increasing needs, and the facilities to move her into ever higher level care, on a regular basis, have been accessible according to her needs. That too is a blessing as I know is not always the case for every situation.

But putting the practical issues aside, the hardest thing is watching someone whom you love dearly slowly drifting away. She is physically there and doing quite well, but what used to be momentary lapses started to become very obvious times of her losing focus, losing the ability to make choices, and losing the ability to remember how things worked and in fact who people were.

As a teenager, my grandmother Edith (mum’s mum) also suffered from dementia and in the early 70’s we knew a lot less about it. My mother found it very difficult during the dozen or more years (9 of which were in a nursing home) to deal with the loss of her mother in this way. She was sad pretty much all the time and found it very difficult to deal with. Understandably.

Even back then as a young person, I decided that if anyone I knew suffered from dementia, I was going to make the most of what was still there. To love and be present even through the dementia, to not miss out on the amazing things that life can still bring. I didn’t want to be so sad about it that I missed out. This early life decision has proven to be sustaining and life giving for me and other members of my family.

When mum remembered that she was starting to forget things, we could have a bit of a laugh with her about it. There really was no point in crying. We were doing everything we knew how to help her through this time, physically, emotionally, spiritually, medically, so we decided to enjoy the funny things together. Things like her telling me off for not visiting her for months, when I was actually there the day before. ‘Mum’ I’d say,’ I was there just yesterday, do you remember, we went out for a cup of tea?’ After a moment she would laugh and say ‘O yes, silly me, I just forgot for a bit, of course you were.’ Or ‘Mum I think we should put this meat in the fridge, not the microwave’. She would look at me and laugh ‘Oh yes that’s a good idea’. Laughing made the hard moments easier. Or when she would get up at 4am to get ready to go to church and sit at the kitchen table waiting for someone to take her. Church wouldn’t be till 9.30am but she had remembered that she was going, so she got up and got ready – sometimes it might be 2am. We could laugh about that too, and put her back to bed for a few more hours of sleep, then we’d do it all over again at 7am. We could still enjoy each other’s company and get on with daily life – even if that life was now very different.

Fortunately for us, mum is a happy dementia sufferer, most of the time. Sadly this is not the case for many others, where aggressiveness and detachment, blame and anxiety conquer most days. Mum was able to laugh with us, for us sometimes, and we started to realise that we had a gold mine of information coming through that we had missed out on growing up.

Because mum went back and forth in her mind quite a bit – revisiting earlier times in her life, when we realised this we were able to draw out her stories – often ones we hadn’t heard before. Things about her life, her and dad’s life, us kids growing up. When we could tap into those memories, it was amazing. It was life giving joy. But those moments were soon to pass.

As her condition progressed, her elder sister Marj moved from Victoria to be with mum. Marj’s mind was pretty OK in the first years of being together, but at 90 now, physically she is not doing quite as well. Mum and Marj shared a room, and I believe a bed, in the early years of their life with their sister Joyce - the three youngest siblings of a large farming family.

When Marj moved in again with mum, some of their childhood antics started to come out. Mum would stamp her foot at Marj, Marj would provoke mum in fun ways just like young kids again. It was a total delight and such a wonderful thing that these remaining two children can live out their lives as they began. Marj looks out for mum (they are both now is heavily supported care), and mum under the direction of Marj can attend to some of Marj’s physical needs – she can’t remember how to make a cup of tea now, but she can carry it to the table when Marj asks her to.

Closing both family homes, and subsequent moves have allowed us as a family to adjust to their diminishing independence and we have had many laughs and poignant moments as we sort through photos, memorabilia, stuff that we grew up with – even an old vase, or family bible can hold amazing memories.

We have created a photo board for both of them, and we try to bring these memories to the discussion when we visit. Sometimes mum remembers, often she doesn’t, but when she does, it gives us another opportunity to be lovingly present even through the dementia.

As the months have gone by, mum is ever less present. Her body is there, but her mind is not. Only occasionally now do we see the shining light behind her beautiful eyes. Much of the time life is about the routine of day to day, which in itself has become exhausting.

Dementia is a cruel and heartless disease, and we need to learn so much more about it. We need to prevent it and for those it is too late for, reduce its symptoms. We are living in an era where this is more and more possible. Thankfully.

In the meantime, for mum and our family, we will keep loving her, keep tapping into those ‘present’ moments, rare as they might be and when the light is there behind her eyes, we longingly wait for the words ‘I remember you!’.

Merelyn’s writing is supported in part by the sale of her books. Autobiography - ‘The Deepest Part of Me’.  ‘Inspire’ – inspirational reflections for your life’s journey.  ‘Stories behind the Songs’ and her first children’s picture book ‘To The Moon and Back - Grandma’s Rocket Ship Adventure’. To find out more about her work and to support her through the purchase of her writings and music, please go to www.carterandcarter.com.au