Here, as promised, is another set of ‘Tentative Tips’. As I said previously, please do take them for what they are – ideas shared in the hope they might prove useful to others as they have proved useful to me and to carers I have talked to.
Find people who understand
Carers’ Groups can be a God-send. Through my work I know the mental health and social care systems inside out, but nothing prepared me for the problems and emotions I would face when I began to care for my parents. Don’t be proud. Seek out other people in similar situations and have your friends and family support network on standby. The Alzheimer’s Society run some excellent Carers’ Support Groups (including the one I attend), and there may be local Memory Café sessions where you can take the person you care for along and have a chat to other carers, too.
Not all Carers are in the Same Boat!
My dad lives a long way away from me. Although people who care for someone who they live with may have similar experiences of dealing with dementia, the problems of live-in or local caring are quite different from the problems of long-distant caring. I have found another long-distance carer (via the Carers’ Support Group) and we now meet once a month for lunch and to off-load and support each other. Even the two of us have quite different problems to address, but it really helps to know that someone else is in the same boat and bailing out hard too!
Don’t believe everything people tell you
Be stubborn! I was told we couldn’t get continence pants for my dad on the NHS, only the pads. Unfortunately my dad couldn’t work out how to use the pads and they would end up half way down a trouser leg with the peel-off strip still in tack. With the help of the District Nurses I argued his case because both his memory and eyesight problems prevented him from being able to use the pads. Common sense won out in the end and we now have regular deliveries of the pants on the NHS. Fight your corner, gently but with determination, if you need to – or ask others to help or share their own stories or ideas.
Find the fun
Fortunately for me, my dad has retained his quirky sense of humour – and what could lead to more humorous situations than dementia? We often have a laugh about what he can’t remember, or the tricks his mind plays on him. He has also developed a very strange love of ducks (yes, ducks), and his house is burgeoning with quack quackerly variations from cuddly to concrete! If the person you are caring for does not see the funny side (my mum was developing vascular dementia before she died and became aggressive and paranoid), then find a friend to talk to and don’t be afraid to laugh about it together.
Frustration is normal
Yes, it is!
Embrace personality changes
Dementia can make you feel very hopeless as you watch someone you love change and eventually not even recognize you. People often say that they’ve ‘lost’ someone, or that ‘they’ve already gone’ long before they physically depart this world. But personality change can be embraced if we find ways to relax into it, and can even have surprising benefits. For instance my dad was always a very self-contained man who did not express his feelings. The Alzheimer’s has opened up his softer side – he feels sentimental about things that left him untouched before (see ‘ducks’ above) and even tells me ‘I love you’ – something he never articulated to me in earlier years.
Phone call from the ‘builder down the road’ telling me my dog had got loose and had been rescued from running around the cars in the road. I don’t have a dog. It took me a few moments to remember I had got my mobile number engraved on the tag worn by my dad’s lovely westie. And, yes, she is OK and safely returned to her doting owner.
A very special birthday: relaxing reflexology, then time (and a home-made birthday cake) with my wonderful son and his girlfriend, followed by drinks at my local pub surrounded by family and friends. Bliss!
© Anne de Gruchy