One of the hardest things about life with Ms Alzheimer’s, as she slowly but ruthlessly tightens her grip, is recognising and accepting the devastating truth about where you’re heading. And holidays are a particularly difficult time because, sadly and stressfully, they force you to confront that reality. It’s partly, I think, because if I’m not racing about working manically, I have time to think and reflect. It’s also because it’s impossible not to compare the current holiday with earlier remembered ones.
Not so many years ago My Loved One could drive a powerful hire car on confusing (to me, at any rate) eight lane motorways in the US. Today he cannot descend a flight of steps unaided. In the recent past he would have booked flights, accommodation, ordered currency and arranged insurance. He doesn’t have a clue about any of that now and all the admin falls to me. Until two years or so ago, on holiday, we’d spend whole days out and about seeing or doing several things each day. The new MLO can sometimes manage an hour or two before he flags, but not always.
We’ve just spent eight nights on holiday in Washington DC. By the time this is posted we shall be home although I’m writing it on our last day in the US. Why Washington? Well, we both had fond memories of visiting Georgetown on a trip a few years ago when we then picked up a hire car and headed south to Baltimore, Maryland and on to Virginia and MLO had said several times he’d like to revisit. So I fixed it. I had misgivings, of course, but I carefully ignored them.
I booked special assistance at the airports and it worked very well – a new experience for us. Of course he doesn’t normally need a wheelchair but unsteadiness and inability to stand in, for example, queues for more than a minute or two meant that it was really useful. It also meant I had a helper to look after him while I dealt with hand luggage etc – I only have two hands and two arms, after all.
Once airborne there was continual confusion about where we were going and why. Halfway across the Atlantic on the outward journey, he thought we were heading for Heathrow, for example. I must have reminded him a dozen times that we were going to Washington. I think cabin pressure or altitude (or something) worsens the effects of Alzheimer’s. I noticed this twice last year when we flew to and from Malaysia and Greece.
Making decent use of the time while away is another problem because I have to deal with his often feeling unwell and not wanting to do anything. It’s easy to delude oneself that this is apathy or lethargy but it’s really just the illness. Fortunately I’d booked one of those American “suites” which gives you a sitting/kitchen area attached to the bedroom so “staying in” was reasonably comfortable. And sometimes I left him resting and went out on my own – bliss to be able to stride along at my own natural speed and be temporarily “free” although I’m ashamed of the thought.
We did, however, manage to take in Arlington Cemetery, Smithsonian Museum of American History, Dumbarton Oaks and Oak Hill Cemetery as well as exploring Georgetown pretty thoroughly. We also walked through the White House and Lincoln Memorial area and on the last day went to Newseum, a powerful and moving history of news/journalism which seemed to have my name firmly on it. At each of these, though, time had to be limited and I had to make sure that MLO could sit down as often as possible. The jury is out, though, on whether we really got value for money overall in terms of sightseeing.
I was hoping I’d get a rest and I suppose I did to an extent. It’s not very relaxing, though, to have to be alert for problems all the time and to assume full responsibility for another person. It often reminds me of having a small child again (I even now have to oversee choice of clothes, collect his buffet breakfast and open the butter packets etc for him) especially during the night. I’ve learned to snap awake instantly if I hear him stumbling about doing anything other than just going to and from the bathroom. He has very powerful Alzheimer’s-driven dreams and often gets very confused. It means I have to be able to reassure him calmly irrespective of how deeply asleep I might have been. As a young parent I did this and more, of course but it was … well never mind how long ago but I was a little shorter in the tooth then.
The problem with holidays is that they are, by definition, a break with routine and that’s not good for someone with Alzheimer’s so I’m left wondering what, if anything, to do about holidays in future. Maybe a cottage somewhere not too far away that I can drive to and then recreate home routines within it while we get a change of scenery? In all honesty I think Washington was almost certainly our last long haul holiday. Pity really, I love travelling far afield, especially in the US, and I’d dearly like to see my friend in Australia again. Trouble is that Ms A has her hideous fangs buried in her husband too so it looks as if neither of us can travel.
So the chances are that I shan’t get to see the orangutans in Indonesia or the Taj Mahal after all. Not that I can possibly complain. We’ve travelled a lot in the last 15 years or so and I’m lucky enough to have seen wild bears in Canada, rhinos in S Africa, aligators in Louisiana and, marvellously, a platypus in Tasmania. There have been many other wonders too, both natural and man-made, from the Petronas Towers to Table Mountain and Sydney Opera House to the Grand Canyon.
It’s just very hard indeed to accept that the best is probably behind you.