My Mum’s Dementia Story - When a Parent is Diagnosed with Dementia – A personal account ( the author would like to remain anonymous).
With someone every 3 seconds being diagnosed with dementia. It is highly likely that you know at least one person if not more affected by this disease. Of those people who have dementia it is thought only 25-50% of those have a formal diagnosis.
But what happens when a parent is diagnosed with dementia? How does this affect family dynamics? What support is available? And what should you expect? In 2017 my mum was given her dementia diagnosis and I want to share my story and give an understanding of how dementia can affect everyone and not just the sufferer.
It is important to first note that with dementia no two people’s stories are the same. That is the thing with dementia, there is no clear and simple diagnosis and treatment plan. No clear idea as to how quickly symptoms will develop and in which ways your life will be affected.
I was living overseas when my sister first shared her concerns with me. The practical down to earth sister. My other sister had her head well and truly buried in the sand. So, from a distance with conflicting information I didn’t really know what to think.
When I finally returned and got to see things first-hand it still wasn’t necessarily clear cut. Mum was still my mum, a bit forgetful perhaps but many old people are. My understanding of dementia was quite black and white.
But, over time it was the subtle changes that made us wonder e.g. stress and panic about situations mum would normally cope with. And an almost irrational fear of losing my dad. Not in death terms but losing sight of him in the shops and being convinced he had left her.
We started gently mentioning the idea we thought perhaps mum had dementia, but she wasn’t ready to accept it yet. And rightly so she needed to be in the right place to speak to her GP. It was almost a surprise when one day she decided she wanted to be tested.
A GP referral led to a more comprehensive dementia memory test at the local hospital. When we got the formal diagnosis everyone from mum through to the rest of the family shared a myriad of emotions.
From mum’s perspective there was an element of relief, I think. She finally had a label that allowed her to make sense of her behaviour. But there was also anger and a sense of despair, that her life was effectively over, and she was a waste of space.
Finally, the practical voice, the acceptance that as a woman in her 80s life and health are more unpredictable generally and there is no point worrying about it.
As her daughter I was shocked by my reaction. Dementia wasn’t really a surprise diagnosis; in fact we were expecting it. I remember going over and over it in my head on the 40 or so minute drive to work.
I then walked through the office door and promptly burst into tears. I felt teary and emotional for a few days. I wanted to talk, and I didn’t. I didn’t want mum or dad to see me like this. I guess the reality is that we all reach a point when suddenly we are aware of our mortality and that our parents, my rock through childhood and adulthood, were vulnerable.
Two main things happened after mum’s dementia diagnosis. Firstly, the GP prescribed medication designed to help slow down the development of the disease. I don’t know how you can possibly tell if this work but there is no harm in trying. Mum and dad were allocated a local community support worker. A point of contact should they need help and appointment was made speedily for a home visit.
After introductions and being given some information, we were feeling quite positive that our local health authority was well set up. That should mum and dad reach the point where they needed back up then they knew where to turn.
The truth panned out rather differently. To be fair 2 years on mum and dad don’t really need any local authority help. In that two years however, there have been 4 different support workers allocated to them as people have either been moved or have left. They have just had the first home visit (from another new face) since the initial diagnosis visit.
This is somewhat ironic as continuity and routine is the key to helping a dementia sufferer deal with the stresses of everyday life.
How Dementia has Impacted Mum and Dad’s Everyday Life
We straight away had a conversation about getting Lasting Power of Attorney in place. I can’t emphasise enough how important this is, as down the line, if your loved one loses mental capacity, it makes things much simpler. It is important to point out it does not come into effect immediately it is a safeguard for when the point comes, if it comes, that decisions need to be made on the persons’ behalf.
Day to day the memory loss side has become more and more obvious. There are things that exacerbate this, and we have learnt as a family to alter our outlook and our routines to make life as easy as possible.
It’s a tricky balance trying to help mum live with her condition without feeling like we are patronising her or treating her less like a fully functioning adult. She has full mental capacity; she is still our mum in every way. She needs a little more understanding.
Routine is key, things that happen out of the everyday don’t necessarily cause confusion, but they do cause stress. She can no longer cope with everyone in the house for a meal, in fact she no longer enjoys cooking at all. A mixture I think of having planned meals for the past 60 odd years and the lack of confidence that comes from no longer remembering all those every day recipes that you store in your head.
Imagine having your phone wiped and having to try and recall all the telephone numbers. That is a small taste of how life can be when you have dementia.
It is also important not to forget the partner of the person affected. Despite almost 60 years of marriage dementia holds a new challenge. Mum’s frustration and anger- dad gets the brunt of. She also no longer likes to be alone, so the situation can feel all consuming.
It is important that the partner if possible, can have time do their own thing. If the dementia sufferer is safe, then maintaining independence is still important. Whilst I know that still working part time and having some hobbies, means dad is still able to cope OK.
If there is other family back up, then the more the better. We have our parents to visit more, do things with them and when dad needs to get some time for himself, we can spend quality time with mum.
Finally, it isn’t all doom and gloom, a lot of our family life feels the same and we often can deal with these challenges with a healthy dose of humour.
What the Future Holds?
Who knows? Life is unpredictable and we cannot possibly know if dementia takes our mum or as she is in her 80s any number of other medical diagnoses. She may have ten or more years, maybe only one but we are lucky that we are a strong family unit all living a few miles from each other.
No family who has a close relative with dementia has a crystal ball so taking each day as it comes is all you can do. I would say though that support is very varied depending on which local authority you belong to and it is not always easy to know where to access help.
If you need support, a private service like ILA.life that have contacts and understand the system along with a caring/nursing background – something I think is invaluable.