Travelling with Azheimer’s

So, I travelled to London to stay with my daughter for Christmas. A one hour journey with one change which went well I got to Euston fine. No sweat. Next – two tube journeys to meet my daughter.

No problem eh? First tube was ok, I started to feel a bit anxious but the instructions were clear, get the Victoria line Northbound. Just follow the signs.. and yes I got on the right underground train. I alighted at Highbury and Islington and had to get on the overground to New Cross Gate. I couldn’t see the map on the top of the wall to see where we were, and started to worry that I was on the wrong train. What if I was on a train going in the opposite direction? My anxiety levels started to increase. I was no longer sure about what train I was on. This should be so easy, I have the directions on my phone as a list. But can I be sure the list and the train I am on is the same? The feeling of anxiety is heightened even though I am trying hard to convince myself to calm down; I am on the correct train.

Once upon a time I would take all this in my stride, no stress, on the wrong train – no problem just get on another tube in the right direction. Sadly now that is a harder option because I am no longer confident in trying to sort out where I need to be.

I am well aware that I am at a very High End Functioning end of Alzheimers/Dementia – thank goodness. Keep going like this for as long as I can.

Anyway, I got there fine and we had a very nice time, nothing special, nothing racy, just quiet and normal. We cooked a wonderful dinner together, we watched Disney films: Frozen, Brave etc.. lovely!

And then……we just remained cosy and normal for Christmas days. Eating, drinking (not too much) watching TV, chilling, sleeping..etc, just the relaxing time you would want for the holiday period.

Journey back: just hell

No trains back from Euston. Various routes: but mainly from Marylebone – via Banbury/etc etc.. I had negotiate my ticket on the train because I was not on the Midland Mainline. I had a change at Birmingham Moor Street with a walk to Birmingham New Street. Sorry but I could not contemplate trying to find my way to New Street Station so i called Mr Hsg and he picked me up from Moor Street Station.

Phew, anxiety breakdown averted. I feel so good that I did it.

I used to be able to go anywhere without much trouble, if there were challenges to work out the route – no problem. Just find the destination and work it out. These days I plan, I write out the plan, I get anxious that the plan is not working. But, right now I can make it.

When you think of someone making a simple journey difficult, think hard.

A simple bus journey that you and they have always done, suddenly becomes the most complicated journey ever. Don’t expect a person with Dementia to be able to negotiate a simple journey like they used to. Written instructions may have no meaning, memories of the journey may be lost. Do not assume that because they did the journey before, they can do it again.

Fortunately, I am still at a stage where I can phone people who I know can help me when I get confused. But the time will come when I am no longer able to make that simple train journey on my own,

Before you assume your loved one can travel the same as they have always travelled, ask them if they still feel able to do so in the same way. Do they feel confident? Has anyone written out their route for them? Is there anyone who can meet them?

When I can no longer travel alone, who will be willing to accompany me to where I want to go?

These are the things that need to be thought of in Early Onset Alzheimer’s Disease.

Just thinking……………………..

My Dementia Dreaming

Adventures with friends!

My dreams are becoming more complex. They are not scary, but they are so involved it is like watching a film. It is not like seeing snatches of scenes but whole segments of an ongoing story. It appears that I am weaving people, bits of television programs, reality and events into fantasy all involving myself into a nighttime world that I step into. I have caught trains, been in airport terminals, I have been pregnant, built houses, had adventures, travelled with friends and companions I have never known before, with my friends who bear no resemblance to their real selves, and all in 3D and colour!

The dreams are relentless each night, and sometimes leaves me mentally exhausted in the morning, without the ability to retain the memory of the details of them. I simply wake with my daily head pain, my brain stuffed full of mental activity, which by the time I have made a drink and take Dreams or reality n my tablets and ease into the day, dissipates. But I know one day they won’t.

There is no real point in trying to work them out because they are garbled meanderings that have no meaning.

from_machination_of_dementia_series_by_lukaszwodynski-d5lssdw.jpg-142250 I know that they may get worse, and hope that they do not develop into nightmares, common with some types of Dementia.

The problem with dreams is that as the disease progresses they become mixed up with reality. I have had odd flashes of thinking of something and wondering whether it was real or did I dream it? Did I talk about that to someone? Did they tell me? I don’t want the day to come when I am awake and the dreams are still real. I mean that the people in my dreams are there in my waking, or the events in my dreams are part of the reality during the day. When the day comes when someone starts arguing with me that what I have just told them is not real it will be sad.

Reality of Alzheimer's

So just don’t argue with me, I want to say now, my reality is not the same as yours okay!

Living with Early Onset Alzheimer’s Disease (EOAD) my thoughts on the word Support

I though about the word ‘support’ and wondered what did it mean, or rather what did it mean for me? To start with I began to think of what the actual meaning of the word ‘support’ is. From the Macbook dictionary this is what it says

support

verb [ with obj. ]

1 bear all or part of the weight of; hold up: the dome was supported by a hundred white columns.

2 give assistance to, especially financially: the government gives £2,500 million a year to support the voluntary sector.

• provide with a home and the necessities of life: my main concern was to support my family.

• give approval, comfort, or encouragement to: the proposal was supported by many delegates

• be actively interested in and concerned for the success of(a particular sports team). fans should always support their team fully, no matter what. [Me: Activities I do with regard to bringing awareness for EOAD]

• (as adj.supporting) (of an actor or role) of secondary importance to the leading roles in a play or film. the production’s greatest successes are in the main supporting roles.

• (of a pop or rock group or performer) function as a secondary act to (another) at a concert.

3 suggest the truth of; corroborate: the studies support our findings

4 produce enough food and water for; be capable of sustaining: the land had lost its capacity to support life.

5 endure; tolerate: at work during the day I could support the grief. [Me: Understand that I do or say things that may driven by this disease and not under my control]

6 (of a computer or operating system) allow the use or operation of (a program, language, or device): the new versions do not support the graphical user interface standard.

noun

1 a thing that bears the weight of something or keeps it upright: the best support for a camera is a tripod.

• [ mass noun ] the action of supporting something or someone or the state of being supported: she clutched the sideboard for support.

2 [ mass noun ] material assistance: the bank provided unstinting financial support | air operations in support of British forces

• approval, encouragement, or comfort: the paper printed many letters in support of the government | she’s been through a bad time and needs our support. [Me:encourage me in my endeavours]

• technical help given to the user of a computer or other product.

3 [ mass noun ] evidence that serves to corroborate something: the study provides support for both theories.

4 a secondary act at a pop or rock concert: [ as modifier ] : a support band.

DERIVATIVES

supportability noun,

supportable adjective

supportless adjective

ORIGIN Middle English (originally in the sense ‘tolerate’): from Old French supporter, from Latin supportare, from sub– ‘from below’ + portare ‘carry’.

Well, from this it appears that it has many meanings whether it is used as a noun or a verb but what part of this is relevant to what I mean? I can take bits from it and make my own meaning, I have highlighted what I think is relevant to me. The origin of the words seems the best of all – ‘to carry from below’.

So now I have set out what it means to me, which part my idea of support is relevant to writing these posts?

……..Right now I have forgotten what was in my head that I wanted to write about! Oh yes…

Writing is supportive to me because it is the cathartic emptying of my thoughts and the discarding of them. Words, sentences, pages often spin around my mind in a confusing whirlwind and this jumble of words makes no sense to me until I have ‘emptied’ them out on to a page. Once I have done that they are gone although they are replaced with the next lot of thoughts. My head is NEVER empty, foggy yes, but still a scrapyard of thoughts, or worms as I call them.

DM flyer It is important for me to separate out what support means to me and I think know that is about ‘understanding’ for me. Another person living with Alzheimer’s/Dementia can understand all the little bits of brokenness that others may not see and although you ignore them, they silently eat away at you nevertheless. I am so thankful that the broken bits are small still and I can continue to live relatively normally. But, support comes from simply chatting to another person with dementia and knowing you are not alone. That type of support is a two way act; talking about how you overcome daily things, such as how to remember to take medication etc, you get different ideas and they get different ideas. Feeling alone is another part of dementia that can be there and makes no sense at all.

More and more the meaning of words becomes significant to me because the semantics of a sentence can throw me totally – what did they mean by that? Was that meant literal or metaphysically? That is where my comprehension is increasingly impaired as I am struggling to discern the difference between the two. When is a joke not a joke? I don’t always know any more. I am finding it important to have things said to me, or explained to me in simple words with a full explanation as I cannot always guess the other bits.

One of the reasons that I ‘catalogue’ anything new publicly is to hopefully educate as many as I can about the world of living with Alzheimer’s and Dementia. Maybe I feel that I am on some kind of mission, if so the very act of writing this is supporting me by getting rid of the worms in my head 🙂 I read somewhere that the need to write can be part of a symptom of damage to the frontal lobe which would make sense to me as I have an underdeveloped frontal lobe of my brain.

The second reason is that I am totally fascinated by the psychology of the disease. I can’t recall any details of studying dementia at University as part of my Psychology degree, all I can remember is studying aphasia (Wikipedia – Aphasia is a disturbance of the comprehension and expression of language caused by dysfunction in the brain). I remember sitting in the medical library at Leicester Royal Infirmary and reading up on all kinds of cognitive disfunctions and thinking how lucky I was to be able to access these wonderfully detailed books. I can recall some of my knowledge of cognitive functions and I find I can apply it to my own cognitive impairments. Should I be so fascinated by my own slow decline? Hell yes, whilst I can, I will.

21/03/2014 – Tests to check my eyes

I was summoned to the Treatment Centre to check my eyes. I had the usual visual field, GDX and another test and all the results were good. Fabulous! That’s what I always want to hear. The consultant asked me questions and finally said, I have never heard of the symptoms you are describing, he mused. Do I look smaller one side to you; no I answered it is usually when I am reading that it occurs, although my perceptions of buildings and road are weird. I find it fascinating I laughed, and he agreed. This sounds like a problem with perception and your brain he concluded saying he would write to my Doctor for a referral back to my head consultant, although it would probably be just for notification only. What an interesting Alzheimer’s Journey this is turning out to be!

An honest conversation with my Father

I spoke to my Dad who was in an interesting mood. His conversations with me always leave me wondering what he was trying to say. I guess because we do not talk as often as we should, and because I am outside of family politics, he finds it easy to talk honestly, and unburdens to me. He spoke of trying to clear the house of clutter that my Mother who had dementia has accumulated over her lifetime. I opened a box, he said, it was 18” by 12” by 9” deep. It was full of things, he said, but there was confusion in his voice. What was in it? I asked. Things, he answered, you know, things for her quilting that she used to do. But there are many boxes like this, he said, lots of them.

My Mother liked to quilt, making sewing boxes, cushion covers, anything that could be made or intricately covered with bits of material. She would constantly buy paraphernalia for future projects and store them. Before quilting she used to make leather gloves. When my daughter was born she made a pair of baby booties in the softest white leather which we still have today in her ‘baby’ time-bag that I made up for her. They were beautifully hand stitched with tiny stitches, lined in the softest cotton, and fastened with tiny buttons.

There was a note of exasperation in my Dad’s voice as he wondered why on earth she bought so much that she could not possibly use in her lifetime. I listened to his voice revealing that the task once started was too big for him to continue. He moved on to talk about the ornaments about the house, “there are so many” he repeated, “and some are worth a lot of money”. He is saying there are far more ornaments packed away than on show. I don’t want to give them away, he says, I don’t know what to do with it all. I pause and think, the college may do classes in quilting and sewing I say, you could give the boxes of quilting materials to them. I am sure someone could pick them up. He agrees that finding a course to donate it to would be good. The question of the ornaments; this is difficult because now he is talking to me as someone who has no connection with the family or the ornaments. I note he is saying he would sell them if he knew how as he does not want to give them away. Okay, I start, you could collect them bit by bit and put them in boxes in the other bedroom (my sisters and my old bedroom) and get the local Auction House to come and look at them to value and sell them for you. He is talking as if he has no knowledge of my Mother’s hoarding behaviour. I was never able to stay with them in their three bedroom house because each of the spare rooms were store rooms for boxes of food, toiletries and items that should have been thrown away years ago.

He says he found some drawing crayons in a box, I may have a go at drawing with them when I get time. He is a wonderful artist but has never found time to enjoy it. Time is what he has now, peace is something he would like.

Thinking back I wonder why I was being so objective and realise that when I speak to him I go into (counselling) listening mode which makes it easier for my Dad to talk to me about what he really feels, and for me to listen to him without it upsetting me. At 92 he is a man of his time who has never expressed emotions very easily if at all, so hearing him bare his soul to me is a privilege. Though I have never had what anyone would call an active relationship with my parents, I am now able to be able to play my part as a daughter and listen as he unburdens how he feels with honesty.

Your Mother is so pale, he says, I think she cannot last long. Although she is hard work she is no trouble, he continues, she used to be quite prickly and sharp as you know, he says lightly, but she is very mild mannered and amenable now, although you can’t have a conversation with her. Dementia has removed her anger; it has transformed her personality into someone who should have always been.

When I ask him about how he is, his reply is brutally honest. You know I have this aortic aneurism, he says, they said six years ago that it could balloon and burst, so who knows when that will happen. He says this as if he is expecting it to be relatively soon. Is it painful, I ask, not yet, he informs me, but I think it can get painful as it gets worse. He mentions his age, and talks about his lymphatic leukaemia and the tiredness. Your Mother getting up at 2:00 am doesn’t help, he says, I don’t know whether I am so tired because the leukaemia is worse or because I don’t get enough sleep. He keeps saying he is not complaining though.

I think about what I was hearing and wonder why he is trying to clear the house now? He is struggling to do it, but wants to get rid of it all – isn’t this something children do when their parents have passed on? Why is it bothering him so much to have my Mothers clutter around when he has lived with it for all of his married life?

What I am hearing from my Father is this: he is not complaining but he is tired of looking after my Mother. He is still extremely bright in his mind and he is spending all day without reasonable conversation. He is not feeling well but he is the carer, and he is tired of life now.

He does not want to hear bickering from my sister and brother, he wants peace.

Birthdays and colds…

I have a nasty cold and have been laid up for a week. It was my birthday yesterday – 61, where has the time gone? I sat in my chair all day feeling absolute pants. I had phone calls from those who care for me but none from my family. My niece J did not send a card, and I think that maybe she did not receive my Christmas card and present to her, but because they never have any contact with me I would never know.

I have been thinking about the cards I make, how difficult is it to sell any when the world and his wife have decided to make cards also. I still have this urge to share them with others so will think about how I do this.

I was listening to a Radio 4 program which was discussing the dangers in the Winter Olympics being held in Sochi at present. Is it too dangerous? Young people are being injured…What a load of tosh! This year snowboarding, half pipe and similar events have been included and the enthusiasm and skill at which the young have embraced the sport is stunning and infectious. However, the health and safety ‘police’ are asking whether we should allow our young people to take risks of injuries! Good God can they hear themselves speak. Ask every young person if they are willing to risk their life to live it to the fullest and I have an idea not one would say no.

As Eleanor Roosevelt said:

The purpose of life, after all, is to live it, to taste experience to the utmost, to reach out eagerly and without fear for newer and richer experience.