Caring for my mother with dementia

Author Martin Dewhurst on what he learned when he moved in with his dementia-suffering mother. 

One of the first things that really got to me was the very tangible concern of leaving Mum by herself. We knew that professional carers would be with Mum at least three times a day, but there was always a lingering doubt she’d be OK in the gaps in-between carer visits.

As things transpired, Mum’s health declined to the point where there was no longer any practical choice other than finding a suitable care home or moving in myself to see if I could help on a one-to-one basis.

mother with dementia doing a puzzle

Mum was five years into her journey with vascular dementia. She'd been refusing her daily medications, eating hardly anything prepared for her by the carers and also getting violent with some of them. Any food we left for Mum during week-night or weekend visits just got left and hidden away in cupboards. Naturally, not eating took its toll and her weight continued to drop, along with her previously good spirits.

The tipping point came following a concerned call from the care team to say that Mum had been found unconscious on the sofa. I instinctively knew that I had to drop everything and move in with her to see if I could at least provide some sense of "normality".

"Not eating took its toll and her weight continued to drop, along with her previously good spirits"

My brother and I were like most people, I imagine, who find themselves trying to do the right things for a parent suffering from the symptoms of dementia. It was a steep learning curve and whilst there was useful advice available from various online sources, nothing prepared us for the reality or the effects the symptoms had upon Mum’s loving, kind, caring nature.    

a mother sat in her wheelchair

The greatest shock for me was seeing Mum being violent and aggressive with a carer. At times the aggression was directed at me too and I never really knew what to expect as Mum could go from being a loving Mother to this violent stranger in a flash. It was as though Mum had been possessed at times and all I could do was to constantly attempt to distract her from her fears at any moment.

Dad had died a few years earlier. He’d been Mum’s main carer and the whole experience, of losing someone day by day to dementia, just didn’t make sense to him. After his funeral, Mum refused to believe for one moment that he’d died and spent every day afterwards wondering where he was or why he hadn’t come home from work each evening.

"One of the many challenging aspects of the dementia symptoms is that the sufferer often doesn’t know that they’re ill"

Mum had set the bar high for us as children, she only ever showed us unconditional love and so we at least had a good idea of what could work in relation to her care. I’d help her get dressed, prepare or cook three meals a day, bring cups of tea by the hour and wherever possible make sure she got to bed at night with a biscuit and a drink of hot chocolate. I’d also attempt to balance this with involving her in the tasks in hand if she wanted to keep her hand in so to speak.

One of the many challenging aspects of the dementia symptoms is that the sufferer often doesn’t know that they’re ill. In Mum’s case, the main thing was to carry on as though everything was just as it always was. Mum regressed at numerous points, to earlier ages going right back to childhood. Her reality was very much a lived experience and in her mind, everyone from that time period was either still around and due to call in for a visit at any moment, or just in the other room.

holding a mother's hand

Many were the nights where she’d be convinced that friends and relatives were coming round for a party and she’d duly rush around setting the table, preparing snacks and getting everything ready until she was exhausted. She would then fall asleep on the sofa with no recollection of the preceding busyness.

I learned to go with whatever experience Mum was having unless it was an anxious one in which case I’d quickly find ways to divert her thoughts towards something less stressful. We found bird feeders to be a great distraction and the fact Mum was still living in her home meant we had access to old photo albums, jigsaws, cine film, colouring books and a good collection of picture books to browse through together. The offering of "another cup of tea" though was our go-to way to cope when the going got tough.

"I learned to go with whatever experience Mum was having"

Mum longed for reminders of her early life in Liverpool and once travelling there had become too difficult, we found great comfort in local history books and a DVD about many of the places and landmarks Mum remembered from her childhood.

If I had my time over again, I’d have moved in to care for Mum much earlier. She used to put on a brave face when I called to see her at weekends, but once I’d moved in, I got to see first hand just how the anxieties that came with the illness, would literally haunt her until she fell asleep.

If I could pass on any guidance for those about to embark on caring for a loved one, here are three things I found that really helped;

  1. Firstly, cherishing every single moment, no matter how challenging things can get. Treating each day as though it could be your last together.
  2. Secondly, keeping a lookout for their inner child and then responding as though you’re caring for her or him rather than the ageing parent.
  3. Finally, ensuring their dignity and self-worth are preserved, finding things they love doing and do as much as possible with them rather than just for them.  

During and after caring for Mum, my conclusion is simply that, “all we can do is all we can do”. And whilst professional care is preferable where medical needs demand, caring for a parent is a gift in itself.

 

Martin Dewhurst is the author of Another Cup of Tea in which he documents his experiences caring for his mother with dementia, the highs and lows and helps others to find their way to cope with the role. Written often in the midst of long, challenging days and nights with both emotion and humour, Martin offers unparalleled insight into every aspect of the journey.

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