living well with dementia – Handbagwarrior; verbal ramblings

Singing for the brain..my way

Sunday at the Coalhouse a micro pub/Real Ale bar. Open mike night every other Sunday starting at 3pm. Home by 8.30 or 9pm!

Of course my friend Lynn and I visit this, our local to enjoy the atmosphere, have a drink and listen/join in with the excellent artists singing.

I sound like an advert don’t I, or a drunken mate trying to get you to join us for a jolly good time

What I am getting at is that singing is good for the brain, and Dementia Choirs are an excellent way to enjoy a pleasure we can all do which is sing. It stimulates lovely memories of music you have enjoyed as a teen/mum/dad, on holiday, a celebration, or a time in your life you associate with a loved one. I am not talking war songs or music from the 40’s here, I am talking music from the 60s, 70s, 80s and so on. As more people are diagnosed with a memory or dementia related illness younger it is important that music is age appropriate.

I am not keen on joining a choir, I don’t have a particularly good voice, not that matters one bit, but I think I don’t like the organised bit of it.

For me I like to hear a live band, or a live singer. Music in the Coalhouse can range anything from folk, Snow Patrol to Creedance clear water, even a bit of Hendrix. Now there’s my type of music at times! To these I sing my head off! Lynn and I are occasionally give a Tamborine and Maracas and we go for it.

Lynn took a picture of me and my daughter singing, playing and having fun. This for me, is my singing for the brain. Suck it up Dementia singing loud and out of tune!!!

So don’t stop going to the pub when live music is on, stay for as short a time as you want, choose an ‘open mike’ event, where singers with a guitar, or singer songwriters just get up and sing. Staying even a short amount of time is invigorating. If classical music is your thing, then how about finding lunchtime concerts? I find it difficult to cope with loud noise or too much background noise, but this is something I find immensely enjoyable because in a small place the level of sound is usually pitched correctly and not enough to blow your ears off. Everybody is singing, you are so engaged that any other background noise simply disappears.

So get your positive pants on and go for it …

Change of site name!

Some of you who read my posts may have notices that I have changed the name of my page. It used to be ‘Before I Forget’, and I realised that there are so many pages with that name which may be more important than mine so thought of a new name.

My URL is http://www.handbagwarrior.com, the domain which I bought a year or so ago, and I identify with the name handbagwarrior in my passion for helping to educate my local town about living with Dementia. I sometime feel like a warrior trying to support my local community to stop being ashamed of the diagnosis and to start looking at how people can live well. So, for me the most natural name for my site is Handbagwarrior: Dementia and me. It has been a long struggle for me to identify who I am now. No matter how others see me, it is how I feel about myself that I needed to change. For a long time I have felt lost as me, when you leave work because of illness you lose your identity initially and when your illness is Dementia it felt like all that I had been disappeared then.

Today I am firmly ensconced in my new community. I am a handbagwarrior in bringing about change in how dementia is seen within the community, and the provision for younger people and those with early diagnosis. I work hard networking and trying to change perceptions. I have set up a peer support group ‘Lets Meet Up, peer support group‘, and am formalising the constitution for the umbrella group of ‘Lets Meet Up’. So under this umbrella is also Lets meet up Art and Social Group. Constituting the group will enable us to raise our own funds with the sale of things that the Art Group can produce. My next challenge is to find a permanent home for the group to meet in every week. My dream would be to have an empty shop to open up a Community Hub in. Somewhere that groups such as ours can meet on a regular basis, a place that can house information about all the groups and charities that are available in the area. Lots of peer support groups look for somewhere to meet, so I don’t think it would be hard to fill the place. I have already made some noise regarding this and fingers crossed this will happen within the next year. Of course its not just me doing this, I do have a side-kick, Lynn B. She is a tireless whirlwind! and we bounce off each other as we attend meetings, appointments and network together to achieve what we need. We are the working group of Dementia Friendly Seaham so there is a cross over in our endeavours.

So, my dementia is very slow progressing and during this time I have a need to get done as much as I can within my community for other like myself.

So, that is why I have changed the name. 😁

Gill x

Quandaries and solutions

Life goes on with its ups and downs and you think, ‘I really must write my blog‘. But then you think ‘I better not write that‘. I know that many of you know what I am talking about because it is that moment when you have an urge to share something very close to you but worry that it will cause a problem if others read it. But how to let people know how everyday things affect you otherwise.

For me, living with Alzheimer’s (ALZ), there are things I want to just write because I am at a very early stage still and it may be of use to people knowing even at this stage how it affects me. So, what do I do? My blog is not anonymous in the sense that it has a name, not a random couple of words. Maybe that was my mistake, maybe I should have made it more anonymous. I could have called it something like – ‘Missing A Marble‘ perhaps. I guess it would not have made much difference apart from not being seen as a real person.

There are lots of things that go on in my life where my ALZ or dementia affects me but only in the slightest way. In ways that would make me question why it affects me that way in particular. The type of wondering that lingers in a corner of your mind knowing that you can’t quite put your finger on why you should react that way.

For a while, I have been under some stress at specific times. To all people living with dementia, stress is awful but then stress is awful to everyone you could argue. Why is stress worse for me? When someone is shouting at you and you have no way out, it can make your dementia feel worse. Most people can shout back, hold their own, and stop abuse towards them, and of course, there are many who simply can’t. But, what if you have always been able to deal with angry people and suddenly you can’t? You find yourself trying to diffuse a situation where someone is shouting in your face about nothing in particular, maybe most would find it difficult to do. Not me, I trained three years as a counsellor, I understand how to diffuse situations, can read the body language, can see past the abuse that is vomiting from someone’s mouth.

Now, though as I draw on all my knowledge and experience, all I can come up with is – “la la la la la la” as loud as I can! Worked, but even I realised that it was a bizarre thing to be singing at a time when another person is at their most aggressive.

Next time is different, I can’t cope with being shouted at. The red face thrust at me as the mouth is opening and closing with the most absurd ridiculous noise emanating from it. I start shaking and crying as I call the police…..

I have Alzheimer’s, I don’t need this. Nobody needs this. But, I, cannot cope with it. They should not be abusing me this way knowing I have dementia.

This is what families can do to each other.

But,

I strike back. I will not be overlooked, patted on the head and accused of being “unstable“. I will show you how capable I am. How I can still organise charities to pick up furniture, quotes for house clearance, create timelines, communicate with solicitors, get things moving. Not because I want you to see me being capable, but simply because I have the time and I can do it.

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!

Dementia: Changes afoot

I have been a bit absent of late. Sorry for that. Please forgive me if you have commented and I haven’t responded. Major changes in my life right now.

I have just signed a tenancy agreement for a ‘compact but bijou’ flat in Newbury where I will be moving early next month.

Going it alone.

Have been stressed beyond reason at times, trying to sort out some new accommodation, but have just spent a week of total relaxtion with my daughter in London. Ok I know that seems an incongruous with peace and calm but trust me it was. I have made phone calls, sent emails then lost myself in mindless tv programmes on SKY to recover!

Moving to a new town where I know nobody, not even the town itself is quite daunting but is a new adventure for me. I am moving into Sheltered Housing, to a Studio Flat in a building which is right on a river. I can see the river from my window so it is good. Water is important to me and I happy to be near it.

Today I signed the tenancy agreement, caught a bus into the town and walked around. Its nice. I will like it here. Then in a year’s time I will apply to transfer to another property in London near my daughter. For now though an hour’s train journey is the closest I can get to be near her. This is my future.

My sole furniture is: one recliner chair and stool, an old pine bookcase, an old pine tv table both which I will upcycle with some nice paint. I have no: fridge, cooker, bed. Who cares!

Sometimes things don’t work out the way you wish the would. Being diagnosed with Alzheimer’s was a major trauma. and not just for me. There is no point in being angry at people who you thought could cope. People are individual, some can deal with things like this, some can’t. No blame.

Now, I am about to try start again.

Next post I will talk about how I have found support and help from the services who promote their services.

Losing weight..keeping fit

I have been trying to lose weight which is hard when you don’t feel like you can walk far. So, I decided to be proactive with reducing my calories whilst increasing my exercise. Easy you say, not really because I have fibromyalgia as well as Alzheimer’s disease which both affect the ability to be active, but I decided that I could start slowly and build up. So, day one, I roughly calculated my calorie intake and walked around the marina at a brisk walk where I live. Day two, again keeping my calorie intake around 1000 kc, I walked further round the marina, coming back and falling asleep in the chair outside our boat on the pontoon! Feeling good about the exercise, and knowing that if I keep going I shall start to lose some weight and be fitter and healthier.