How can I cope with my mum’s crippling dementia?

DEAR BEL DAD died in 2008 and we soon realised Mum was exhibiting some of the classic signs of dementia. Tests and an MRI scan in hospital led (in February 2013) to a formal diagnosis of Alzheimer’s.

Mum lives a quarter of a mile away from me in a sheltered housing complex.

She’s never been a mixer, so has always refused to join communal activities, but stays in her little home and only goes out when we take her somewhere for a treat. She’s 89 and depends on us for everything.

Luckily, my husband is a gem, loves Mum and looks after her better than I do. He never seems to get impatient and always treats her so sensitively.

In many ways, her Alzheimer’s is not too bad. She knows who she is, and who we are, but seems constantly to refer to her childhood and rarely talks about her adult life or her time with Dad — although she constantly says that she misses him.

Her short-term memory is bad, so we’ve put a white board in the kitchen with stuff she needs to know written on it to help her.

The deterioration i n her cognitive abilities is much more marked. Lack of logic, inability to appreciate the worth of money, time lapses and so on.

It’s really hard to see my formerly sharp Mum this way. If we didn’t help with food, she’d live on bread and jam. If we didn’t write down TV choices, she’d just watch Jeremy Kyle all day. If we didn’t take her out, she’d never leave the house. Yet she calls several times a day to tell me she’s lonely and just wants to hear a voice.

She asks the same question time after time. She phones and asks what I’m doing, just as I’m trying to relax after a very busy day. I try to be compassionate, supportive and sensitive but sometimes fail abysmally. Then I feel so guilty. Before he died, Dad said he knew I would take care of Mum, but sometimes I find it hard.

Perhaps understandably, Mum doesn’t want to talk about her condition. She says there isn’t a problem.

I understand — but this makes it very difficult when she tells me something for the umpteenth ti me within 30 minutes or phones to ask the same question yet again.

I suppose I am searching for a strategy that will allow me to be able to accept what’s happening. To not challenge or contradict or correct her — which are the worst things you can do. To stop being angry with her.

ALICE

On the s ame day, earlier this year, two emails arrived f rom two daughters telling me about their mothers’ Alzheimer’s.

two women who had enjoyed a close relationship with their mums, but were now full of grief and guilt because of the terrible changes wrought by a disease that afflicts so many families.

You live just a quarter of a mile away f rom your mother, but the other lady, whom we’ll call ‘S’, lives in new Zealand — which makes her life even more unbearable.

When she comes to the UK to visit her mother she l eaves her three young children on the other side of the world and they don’t understand and she feels guilty. When she is back home in new Zealand she feels guilty because of her mother.

You make the point that Alzheimer’s ‘destroys the person you love’ and S agrees. She grieves for others whose parents are afflicted and hopes her problem (guilt) ‘will resonate with some of your readers’.

Of course it will — although those are the very ones who’ll know how hard it is for me (or anybody) to offer words of comfort or advice.

I have never been a carer and my only experience of the illness comes

from watching a dear friend slowly disappear into its depths, holding out his hand as i f grasping f or assistance I was helpless to offer, until he no longer recognised me.

subsequently, I spent a day in a dedicated care home to research an article for this paper and also went to the launch of an excellent book called Contented Dementia by Oliver James, about a special method devised by his mother-inlaw, Penny Garner, for caring for people with Alzheimer’s.

I recommend this book as a way of starting to come to terms with what has happened to your family.

One of Penny Garner’s important points is that ‘a great deal of the mind and emotional self of the person with dementia is stil l functioning as well as it did’ and that ‘ people with dementia are often using past experiences to make sense of the present’.

There is so much to learn from this book — and getting to know as much as possible about any condition afflicting someone we know can help us feel less alone.

s, in New Zealand, feels guilty because she i s not here, even though she has three siblings in the uK. You feel guilty for becoming f r ustrated by y our mother’s repetitions and failing to be as patient as your husband.

No words of mine can stop that draining guilt — but I do suggest both of you counterbalance it as often as possible by saying aloud a simple sentence: ‘ I am doing my best.’

Both long emails convinced me that i s true. You are doing your best — but you can’t help grieving for what you have lost.

Only by accepting who you are and who your mother is becoming can you find peace. I know it’s hard but there is no other way.

The other day I received a letter f rom a l ady i n Liverpool called Dorothy, who told me her beloved husband changed before his death — almost becoming somebody else. After 53 years, that was hard.

she told me her strategy: to banish the bad memories of him at the end she wanted to ‘see’ him as he was, so looked at ‘ hundreds of photographs’ while she spoke her memories of happy times aloud.

It always worked, and so she asks: ‘Do you think this therapy would help others?’

Well, I think it might, which is why I suggest you try i t . Look at pictures with your mother, talking about whatever her memory brings to the surface. And as you breathe deeply, f ocus c al mly on her presence. she is still there with you — and I suspect her emotions are telling her again and again that your best is good enough.

Think of the memory of love as imprinted on you both — ultimately unassailable. The thought may bring some small consolation.