Dealing with life after a dementia diagnosis
tomatoes and mushrooms, which he’d rejected all his life.
4
Make the home safe. We were visited by an occupational therapist soon after diagnosis. She recommended extra rails on the staircase and elsewhere.
It doesn’t look pretty but you really don’t want YLO to fall over more than you can help. Later our son put ramps in our kitchen where there are some awkward steps too.
You can get help with all this, once you’re diagnosed and in the NHS system. Later I was also provided with a bed “fence” to stop him falling out of bed, a bath board and a hospital bed for downstairs.
5Deal with the form filling. Make sure you have Lasting Power of Attorney set up so that you can sort out money matters and make health decisions on YLO’S behalf.
You are probably entitled to Attendance Allowance too, which helps pay for some of the extra things that you may need.
Apply for a blue badge, too. Even if you don’t have a car, they might travel in someone else’s car and being able to park near the door of the destination makes a huge difference if they are wobbly on their feet or, as in Nick’s case, usually need to get to the loo fast.
Your local council will issue these.
You need GP endorsement and might require being independently assessed by a physiotherapist as well.
6
As incontinence gradually sets in – as it probably will – be prepared to use pads, bed protectors and so on. And remember that medical-type disposable latex gloves (available in any pharmacy) are your friend. So is a cheerful little rucksack containing pads and the like for when you go out.
7
Accept that some days will be worse than others. One of our worst ones was when Nick fell against the radiator in the bay window in our younger son’s house and almost severed his right ear. We then spent five hours in A&E in Brighton.
Take deep breaths, try not to feel annoyed and give lots of love and hugs.
8Carve out time for yourself. If you become ill, mentally or physically, then you have an even worse problem. It’s like fitting your own oxygen before helping anyone else on an aircraft. So accept all offers of help.
Family members are often willing to do an afternoon or a weekend so that you can go off and do something else. Music courses are my thing and I did several while Nick was ill, usually while our elder son took over at home.
If you can afford it, professional “sitters” (carers) worked well for us, too. There are also local day clubs and hubs but these will not take anyone with toileting issues, so were no use for us.
9
Recognise how very kind most people are. I was bowled over by the sheer goodness of total strangers who gave Nick their place in the loo queue, were gentle with him in shops and, towards the end, helped me on and off trains with the wheelchair among many other things.
It’s heartwarming – and that makes you feel more positive about what’s happening to you. 10
Remember love conquers all. It really does. You love the person you’re caring for and they love you – although personality changes might hide it in the late stages. That’s what will get you through.
■■The Alzheimer’s Diaries by Susan Elkin (£9.99, The Book Guild) is out now. It tells the story of Nick’s illness and how they coped together.
Accept that some days will be worse than others. Take deep breaths