Documenting the Dementia Journey

In the words of "Jade"...

Raising awareness around topics such as Dementia, is of great importance to our Team at Home Instead Exeter & East Devon.

It’s a passion at the heart of our company, led by our Owner/Directors, Mark and Vanessa McGlade. We are often reminded of why this is so important…

Seachange of Budleigh is an organisation valued by both ourselves and the community. In a recent Dementia workshop hosted by Seachange and led by Mark, we were pleased to meet the partner of a prospective client (whom we shall call “Jade”) and who we have subsequently been able to support, as they sensibly start to consider the options available for the future

The journey whilst living with Dementia can be emotional, challenging, and thought provoking.
If you are in the position of coming to terms with a recent diagnosis of Dementia, are already on this pathway, or are a Care Professional supporting clients and families who are living with the daily challenges that this can present, please take a few minutes to read the following words, beautifully penned by “Jade” and kindly shared with our team. Aspects will no doubt echo with your own experiences…


Usually, a baby grows into a child and learning takes place. It is tragic for parents if this tiny life is cut short. If not, there are many factors involved in growth and learning. Genes, environment, parental ability to nurture, to teach, finances, opportunities, encouragement, praise, resources and many more.

Later, or sadly sometimes sooner, if Dementia sneaks up to take over a brain of an adult there seems to be a process of ‘un-learning’.

Some of the factors above may then influence this un-learning.

A slow forgetting of what has been learned, from how to use a TV remote control or a washing machine…to how to tie shoelaces or fasten buttons.

I am seeing this process happening in my husband.

Skills that have been learned and used for decades remain longer in his shrinking brain than the newer skills like pressing the right buttons on the dishwasher (a quite recent luxury in our home).

We all mislay items or sometimes forget what we were going into a room for. Often it is because we are distracted and when we stop and think we regain our intention. But when a brain is shrinking, the reason for going into another room, or the item, is lost. Short-term memory is beginning to fail.

As a primary teacher, I had to explain or instruct a child carefully and slowly, maybe re-phrase if not understood at first. Patience, repetition, demonstration were all needed for true learning. (i.e. retaining the skill). I am noticing my husband’s reverse learning. 

Over the past year or so he has forgotten how to turn on the dishwasher, he could not learn how to use his phone or the new tv remote, recently he no longer knew how to switch on the washing machine. 

It seems the more buttons that need to be pressed in order, the faster the un-learning.

The kettle needs only one button to turn on so he is ok with that…and he does it several times a day!

The more complicated the process the quicker the loss of the previously learned skill. 

Dementia seems, to a non-expert like me, a gradual descent into a new childhood. A full circle?

But if you are a spouse or partner who is a similar age, a late ‘parenthood’ can be exhausting. 

Or it might be that you are now parenting your parent, equally as difficult.

Any ‘carer’ gets tired, can lose patience or become weary of the repetition, explaining, justifying and may feel frustration at the un-learning.

But once the situation is accepted there are rewards.

If as a carer, wife or husband, son or daughter, sibling or close friend, one decides to devote most of his or her time to making life as happy as possible for their loved-one, unexpected joys might appear.

My husband attended his first ‘Memory Cafe’ where there was a gym. When talking about it to close friends the following day his eyes lit up like I’d not seen for a long, long time. Brightening his often-expressionless face.

Or when, after a walk, he seems brighter and more alive.

I am under no illusions. I supported my mother with Vascular Dementia and tried to rescue her from the ‘cloud of un-learning’. (Ironically, she used to look into the sky a lot, I remember. Now my husband has started to do that). The ‘cloud’ is bigger than us!

He is gradually losing words, not just the odd name but whole sentences. He struggles, his lips quiver as he searches for words to express himself. I cry inside.

The listener looks on politely, not understanding what he is saying. I try not to explain for him but then I have to. 

Thus ‘guilt’ enters my thoughts. Have I done too much explaining for him in the past? It can be a trait of wives with quiet husbands. (or the reverse, of course)

Another joy is meeting the lovely, kind people who work or volunteer in the Dementia World. Unsung heroes who care for patients and carers alike.

Now, I have a new role for which I did not apply. 

It encompasses Secretary, Housekeeper, Nurse, Driver, Entertainer….pacifier. 

I dread to think of future aspects, so like many in our carers army, we battle on One Day at a Time!

(Watch this space, I may have time to update.)

By “Jade”.

Our community is a caring, kind and connected one, and with continued efforts we can also make it a more inclusive and welcoming place for those living with Dementia, during #DementiaActionWeek and beyond. We feel privileged that “Jade” would feel comfortable in sharing her sincere thoughts with us, and more so, appreciate that they would see the value of sharing them in a wider forum. Thank you, “Jade”.

If you would like further information regarding our officially outstanding home care and companionship support or would like to organise a Dementia Awareness workshop for your community, please don’t hesitate. Contact our team on 01395 200600, visit our website HERE, or follow us on Facebook HERE to discover why we are different.