Alzheimer’s Australia NSW recently released a very helpful little booklet called Travelling and Holidays with Dementia. This prompted me to reflect on our travel during the later stages of Graham’s dementia; we had travelled quite a bit in earlier years, so I guess you’d call us experienced travellers. Our last two trips overseas were sharply contrasting – the first was extremely difficult, but it taught me a lot, so I was much better prepared for the second trip.
Graham moved into the rapid decline stage of his illness in December 2012, bringing new challenges in care, assisted by light medication. In January 2013, we were booked to go on a two-week cruise from Sydney, around New Zealand and back again. We were blessed to be upgraded to a luxury level stateroom which gave us exclusive access to a private lounge. This was to prove extremely valuable in helping Graham to manage the cruise. When we embarked, even though Graham wore a metal medical bracelet, I took the precaution of having him fitted with a “hospital bracelet”, showing the wearer’s stateroom number and lifeboat station.
During the first week of the cruise, Graham became increasingly agitated. At times, he didn’t understand that we were on a ship and I found myself dealing with psychotic episodes, aggression and depression. The large congregating areas and dining areas are often quite noisy, so I found it invaluable to be able to go to the peaceful, comfortable private lounge; there was always finger food available which often sufficed during the day and meant we didn’t have to go to the dining room. We went on a couple of excursions, but they were really stressful because during the whole time we were ashore, Graham wanted to go back to the ship in case it left without us.
At the beginning of the second week, he asked me to take the bracelet off because it was scratchy and uncomfortable; reluctantly, I did so. The following day, while I was on the verandah for a few minutes taking pictures, Graham mistook the stateroom exit door for the bathroom door and, by the time I realised he wasn’t in the room, he had disappeared. Again, the lounge and its concierge were invaluable, as they set up a search and Graham was found. He was so frightened during the separation that when he saw me he collapsed, sobbing. The experience was traumatic for both of us.
I learned many lessons on that cruise. These prompted me to do some careful planning for our last trip. Graham’s strongest wish was to visit very dear friends in Seattle, so I booked the trip. We were to meet them in Hawaii for a few days, then travel together to Seattle.
Firstly, I ordered Mediband bracelets to cover each step of our trip – the ones you can write on and become indelible. On each bracelet I wrote details of the leg of the trip we were undertaking, e.g. flight number, destination, times; or hotel name, room number, mobile phone number. These bracelets are unobtrusive and Graham soon forgot he was wearing one.
Secondly, the airport and flights. I arranged for wheelchair and assisted check-in. Graham’s walking was quite slow, but also his understanding of language was severely depleted and I knew this might cause a problem at immigration. Graham was not happy about the wheelchair, but I stood my ground.
In all locations, I could never let Graham out of my sight, so I took him to disabled bathrooms. I had booked First Class to Hawaii and Business Class to Seattle. This was, of course, costly but I knew that I would have help from staff all the way, including lounge access to get us out of the noisy terminal. Again, arrival into the USA was made much easier because of the assisted passage through the official entry. For any transfers we had to do between airports and hotels I found, even though it’s more expensive, the most successful method was the one which caused the least stress – someone to take care of the luggage, someone to take you to the right place without having to work out where it is, etc.
Of course, Graham’s level of need for the care I provide at home continued during the trip, and the additional level of care I needed to provide in guiding us safely and smoothly through each leg of the trip was tiring, exhausting at times. I wasn’t under the illusion that it would be a holiday for me, but at the same time I did have a wonderful time, regardless of the workload.
I think for me the key to a more successful second trip was the fact that I researched in advance all the assistance available for people with a disability. Coupled with that was my decision to choose the more expensive level of travel in order to have the benefit of all the services that accompany these options.
I have to conclude that travelling with someone who has dementia is not easy and the level of difficulty will vary depending on the degree of cognitive decline. There will be a heightened level of stress, because caring for your loved one outside their normal environment will require heightened alertness to his or her needs and safety. However, if you prepare well, you’re much more likely to find you can manage well and can appreciate and enjoy the opportunity of travelling together.
I didn’t regret for one moment my decision to take Graham on that last trip to visit our friends. One last chance to make new memories!
We will be planning a trip to New Zealand in the near future, your trip has given me the encouragement to finalise it. Thank you for sharing.
Good on you Imelda, what an amazing, selfless thing to do! I bet he enjoyed being in the moment with the old friends! I learnt travelling could be a challenge just taking my Mum for 3 nights to Hobart - stressful, tiring, but Mum turned out to be a great traveller - happy to see and experience whatever was offered to her (with seemingly fresh eyes!) and I eventually adopted her attitude of living just in the moment. Time I will treasure with her!