travel – Handbagwarrior; verbal ramblings

Alzheimer’s and living

Sometimes, on a good day, I find it hard to believe I have Alzheimer’s. I question whether I have ‘dementia’ as a symptom.

Of course it doesn’t last long the wonder and the doubt, because I looked at how confused I get at certain times, and the lack of memory intake of recent information amongst other things.

What I am understanding is how I can never be seen as totally ‘normal’ and I then think how can anyone want to be friends with me knowing that I am slightly broken? I think I have always been a person who spends a lot of time alone, feels comfortable with my own company. Sometimes that can be a sort of a silent world, when I have no radio, tv or music on. The silence feels okay and I don’t feel lonely, but I do worry that it is my way of retreating from a world that I have always felt not quite at home in. That is of course, the dyspraxic part of me speaking, but it has an impact on how my Alzheimer’s is.

When my ability to be coherent and indeed, sensible in my thoughts, ideas and speech shines it is difficult to see any brain disease. But, I know it’s there. I know my vision is currently a problem. Patterns are beginning to dazzle, confuse and mislead me into being cautious of levels of flooring. Steps where there are no steps in changes of colours, missing steps where there are steps because of the lack of contrast. This is all new for me, and quite I feel quite shocked by it. How can I mentally feel so alert and normal still and be affected by these Alzheimer’s symptoms at the same time. I am grateful that my progress is still slow and is more physical than mental. I am fascinated by all this and would love to be able to have an MRI or scan or something that I can look at and see exactly what parts of my brain have ‘holes’ now. I loved the neuroscience part of my Psychology degree and if I had the energy I would really like to read current thinking on it!

I have been reading books again which is good. I took my kindle on holiday to Cuba, yes Cuba! and read about 6 books, lying in the shade on the beach in over 30 degrees heat!

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Going through airport check in can be a problem now as they try and hurry you but I can’t be hurried anymore, the more they chivy me along the more flustered I get. I should have learnt the word for dementia in Spanish before I went! Booking assistance is a bit hit and miss and not really available/understood in some countries. However, I love travelling still and don’t want to stop until I physically have too.

I loved Cuba and its people who have been shielded from a totally consumer driven lifestyle. They are friendly and if they stop to talk to you in the streets, they are not trying to sell you anything, they just want to chat. The county is lovely but like stepping back in time in parts with oxen ploughing fields, although there are tractors too. Cubans are proud of their country and who they are and I feel deservedly so. Their political history fascinates me and I realise that I hardly knew anything about it other than the words: Fidel Castro, Che Guevara, revolution and Communism, and that says very little. We had a private taxi and a guide who was so knowledgeable and spoke with an Eton accent! He laughed telling us he had no idea how when learning English in school he managed to get his posh accent! Us British are so embarrassingly poor at learning languages, why the heck don’t we take pride in pushing languages in schools?

Being in Cuba did not present a problem for me at all, I don’t think I mentioned it to anyone, I didn’t need to. I think the simplicity of these countries do not have visual difficulties of shiny floors, fancy patterns etc. To my mind we have become like magpies obsessively attracted to a complicated shiny world. Bring back simplicity in architecture, and design both inside and out I say!

I can still travel the world making memories of being in these places that sticks in my mind and live well with the brain disease Alzheimer’s.

Travelling with Dementia

My experience of holiday travel with dementia with hopefully some useful tips.

I recently had a wonderful holiday in Tobago. I have fallen in love with the island as it is sheer paradise. I felt there was nothing to do but relax, recover, swim, eat, relax, read books…..I read six books in a week, and exercised more than I have in months swimming several times throughout every day.

Travelling when you have dementia however early can be horrendous. The trick is to plan well ahead. Even with booking my ‘last minute’ holiday knowing what makes it less stressful helps the planning. What works for me may not work for everyone but maybe I can say some things that you may not have thought about.

Getting to the Airport

I checked the coaches and the trains. From where I live there is a train that goes from my small local station to Reading – a major station. Then from Reading there is a train to Gatwick Airport in UK. Gatwick Airport trains even has its own platform. However, most of the trains that I wanted that day appeared to go to London which meant travelling across London by tube to another train station which is not good for me. So I kept looking and found that a direct train to Gatwick Airport started at from 2pm and I booked that one. From Reading to Gatwick Airport in one go – perfect for keeping distress down.

I need to know what platform the service goes from in advance, so that if I am on the station previously I check out the platform so that I know where it is.

2. Avoiding the stress of travelling

I worry. I get distressed if I think I am going to be late if there is a time deadline because I have little sense of time these days, also because I know how unpredictable the train service can be with delays and breakdowns.

So, I looked for an overnight stay at an hotel at the airport. I booked a room for my daughter and I online at the Hilton Gatwick South Terminal with a great deal. Checked in online so that I only needed to pick the key up. We both met up there, me being the first to pick up the keys and relaxed with a glass of wine whilst I waited for her.

Food – I knew from a previous experience that the hotel is a very short distance from the terminal so we went there for a cheaper meal that suited us fine.

In the morning we were up, showered and ready to go.

3. De-stressing at the Airport

We had pre-booked the Airport Lounge for a relatively small cost to wait for our flight after checking in our bags, which we also did online. This makes things so much easier and quicker. The Lounge offers a good range of breakfast, tea, coffee, drinks, newspapers, comfortable seats which are all included in the price and is quieter. It is definitely more relaxing that sitting in the general area with lots of people. The bustle of people can be more stressful when you have dementia because it is overwhelming, so airport lounge is a great place to counteract that.

4. The Flight

Choosing your airline and seat I think is important. When you are fit and able you can tolerate a lot of things. In the past I have flown with the cheapest Airlines and laughed at cramped conditions and poor service, but then have paid next to nothing for the flights. Now I have dementia, I must make it an enjoyable experience from start to finish to have a good holiday experience. One day I will not be able to travel so I want to make sure that I can make travelling pleasurable for as long as possible.

I choose a good airline. Personally I fly with British Airways. It is not the cheapest but has the attributes to make it better for me. I usually pay a bit more and fly premium economy which is better than economy or standard. With it you get more seat room, and are offered a slightly better steward service. This holiday I flew economy – ten and a half hours of wishing I had upgraded to have a little bit more room! 15 years ago it would have been absolutely fine but not now. Now it is important to make things easier, less stressful and pleasurable as possible.

Walk about on a long flight. I walk up and down and don’t care how ridiculous I look I join others in a bit of space to exercise. I wish I had bought some flight socks, because my feet and legs started to swell on the flight home.

Drink Plenty of Fluids. Thing is about dementia I forget to think about whether I have drunk enough liquids if I am not at home. I usually drink copious amounts of tea and (weak) coffee throughout the day, its just automatic. Cup empty = make another. When I am out and about it is another matter. I never think about eating or drinking. I try and take a bottle of water with me when I’m out because it reminds me to drink.

So on a flight, you need to keep drinking a small cup of water every so often. On my Tobago flight I found that the stewards did not come round constantly with glasses of water, but you could get up and ask for some whenever you wanted to, but I didn’t think to. Finally when I was not feeling great I went back to get some water and was given a good amount and felt much better after that. So you must remember just because someone with Dementia doesn’t ask, it is important to remember to keep drinking water during a long flight.

5. The holiday

I have realised that it didn’t matter if I didn’t travel to see much of the island. Where I was was perfect for me. It had the peace that I craved to enjoy myself. We walked along the beach, up the coast road, to the local shop to buy water. There’s a tale – there are some guys who are looking out for wives and we were followed by a guy with no teeth trying to tell us he was a good catch because he had a house and some land, he was also trying to tell me his age – 63, trying saying that without teeth! Then a refuse truck came along, stopped and a young guy got out and started haranguing our follower to ‘leave the ladies alone’ and ‘stop harassing’ us. It was very funny!

Even though there were far too many steps for my arthritis and fibromyalgia it didn’t matter, I found the route with the least steps to the beach – sorted. Being comfortable with just watching the birds, sitting in the shade, a bit of swimming was a great holiday.

Returning home was the same. I caught a direct train and it there was no stress.

Everything I do now I plan. I am lucky enough to be comfortable with a computer and being online. So I research. I print everything out and I put it in a folder. I print out itineraries for whatever I am doing if I am travelling so that I have one piece of paper for my handbag to check on ‘what do I do next’.

Next holiday is later this year so I shall be starting my planning a coupe of months ahead of time and start saving for it!

Alzheimer’s: Dreams and beyond 🌏

Just been scrolling through and reading some posts of the people I follow, and some I haven’t met yet. I love reading travel blogs and seeing pictures, something interesting, not just blurb about the places that can be read in any travel brochure but personal experience.

Thing is, I seem to have a ‘compulsion’ to seek out personal experiences in remote places. I am not totally sure why this is, but I feel as if I am always searching for something, some truth or peace. Is this something new? No, I think I have been like this my whole life. I enjoy seeing the simplicity of people’s lives, and even though I know it is a hard existence I find myself imagining what it would be like to return to basics, to be filled with the simple pleasure of seeing the mountains/forests/rocks/grasslands around me.

I found a great site called Gypsy by trade and devoured their experiences feeling so envious. How wonderful to work and save for six months and then travel by bike around remote places. To meet the people they have met, seen such wonderful land around them.

Of course it is an absolutely ridiculous thing for me to feel envious of their lifestyle, I am too old, too decrepit and in pain with Fybromyalgia, and I have Alzheimer’s, but it doesn’t stop me dreaming.

Hope is a waking dream.

– Aristotle

I believe that my peace is without luxury, it is plain, natural, and honest. It is in silence in the midst of the roar of nature. I think if I were remotely religious I would be a Quaker. I once attended a course on debt at the Quakers House in Leicester and remember the feelings of peace being there with the simple style of plain wooden furniture and the calm of the gardens.

I feel sometimes as if my life has fallen through the holes of sieve. The excitement of my youth with dreams and plans trickled through with lack of confidence to live, fell through first…

Now; I feel a contentment in myself, I am terrified for my future with Alzheimer’s because there is nothing I can do to change it, but right now I am comfortable with who I am, and how I am. I have the peace of being on water, waking up to the birds each morning, and most days no industrial noises. Only when the wind blows one way does the traffic intrude.

However, that yearn for travel is still with me, searching for the love of experiencing other places. I love the excitement of getting on a plane and landing somewhere I have never been. Early this year it was Budapest, a wonderful place, and memories with my daughter. We drank in the architecture, the history and culture. We walked and walked finding enjoying the different areas.

Our next adventure will be to Alaska, my dream place to be. Our once in a lifetime holiday whilst my mental abilities are still good. I am not sure how long it will take me to save up but I am already excited to breathe in the remoteness, the stillness, and moments of being surrounded by peace.