Disappointed.

I had a disappointing appointment at the memory clinic the other week.  The nurse did my MMSE (Mini Mental State Examination) test, which I always do well with.  I can usually remember the three items, this time it was coat, book, and apple.  I put the apple in one pocket and the book in the other and had no trouble remembering it!   I am the master of solutions…

I did get one score wrong – counting backwards in 7’s from 100..I was never very good with numbers and have to take time to work it out in my head, I am sure I have dyscalculia (problem with numbers).  I got one wrong and she said I probably just made a mistake.  Really?  ‘No’, I said, ‘I meant to say the number’.

Just because my MMSE scores are high doesn’t mean that I am not affected by my Alzheimer’s.

I can tell what has changed for me in the past year since my last appointment.  One thing is the ability to tell when something said is being said in jest or for real.  I struggle to understand throw away remarks as being just that.  I have to question, ‘did they mean that?’ There have been times when my daughter has said to me that she or someone has been joking when they said something, that it wasn’t meant to be real, and I have struggled to think it out how I couldn’t have seen it.  But truth is I don’t get these things like that any more which can be a bit embarrassing for me when I respond in all earnest.

I also find myself crying for no reason at all.  NO I AM NOT DEPRESSED, how many times do I have to say that!  I have a positive outlook on life, in fact I think my life is pretty good right now, despite having Alzheimer’s and despite the prognosis.  I have come back from a wonderful holiday….will write about that next and how I got on travelling, and have booked another holiday to Tobago in February to look forward to.  Anyway to get back to the ‘crying’ business, the nurse tried so hard to tell me how I have a lot on my plate and it is natural to get depressed about things. Grrrrrrrrrr…..I tell her I do not have reactive depression, nor do I have clinical depression, but I think she has her ears turned off.  Finally, thanks to my online friends living with dementia, I was told about PBA  (Pseudobulbar affect).  Online sites talks about ‘emotional incontinence‘, although I prefer the term emotional unzipping as explained to me by Dr. Jennifer Bute.   Anyway, I think I may have to print out some information and post it to the memory clinic so that they can learn about it!  I took it the info to my GP to tell them that I did not want to increase any antidepressants, he took the information and typed it into the computer without commenting.

I also discussed about the 6 monthly reviews with my GP which I have never had.  Apparently I am supposed to make the appointments myself.  I asked how I am supposed to remember to make an appointment every six months when my memory for appointments is pretty awful?  No real answer, but a suggestion to get the Doctors surgery to remind me- that’s not going to happen because they don’t do that either.  So, I am left without a solution for that one other than buy my diaries in advance to make sure I write a note in.

All this is more difficult when you live on your own.  I don’t have family to remind me to do things, or notice when I don’t,  or notice when I am not up to par that day.  I have to rely on myself alone.   Take it easy on the days when I am not 100% and push myself on the the other days.

I am also struggling to take my medication every day.  For goodness sake, I leave it next to the kettle so that when I make my morning coffee I can take my tablets, but do I?  Nope..I seem to be blind to the blister pack, and simply get my coffee.  A friend suggested that it would be better if they incorporated medication with coffee/tea and no one would forget to take them then!    I think, how can I not remember that I take medication every day, how stupid is that?  I am an intelligent woman and am used to putting all sorts of solutions to  put things in place, but it seems my brain simply switches off to certain things occasionally. Don’t think I haven’t tried all sorts of things because I have.  I have thought of a board on the wall to mark when I have taken it but I know I won’t keep that up.  I am now on my second phone app with a reminder to take them…which seems to be okay at present.  I tried recording my voice telling me it was ‘time to take my medication’ but randomly it started up during the middle of the afternoon!   Right now I have an app that is a simple reminder and is working.

There is a research study I would love to join but have realised that joining any research study is going to be hard for me because I have no ‘study partner’.   Single people living with dementia seem to be more disadvantaged because they have no ‘other’ to monitor or talk for them.  It is so hard for me to acknowledge that.   I did ask the Alzheimer’s Society if they could find someone/a befriended for me but I am unique in that I am so early in my diagnosis there is no one suitable for me.  I guess looking for a ‘friend’ to do things with who will get to know me and maybe travel with me to meetings etc, is a tall order and would take someone who is in a position to be flexible who would like a friend also!   Who knows maybe I shall meet someone who is need of a friend also….

As well as my recent holiday, I do have daily good things.  My allotment is coming along, slow but sure.  Once I find a way of getting some free pallets to my plot I shall continue to make some raised beds.  I had lots of veg this summer and am planning for next year already.  I do enjoy my activities with the YPWD – Young People With Dementia group.  I realise how lucky we are in Newbury, Berkshire to have them because what they provide is quite a rare thing around the country, which will hopefully with change with new groups springing up focusing on younger people with dementia.    I have enjoyed my weekly gardening with them, and the art activities we have done.  Recently we have had Harriet with us from the Corn Exchange in Newbury with us organising some activities in connection with the Library, and a morning talking about childhood books was most enjoyable.  We have drawn and painted, and created paper sculptures.   Yes this is an important group for me because I feel like I can be myself and not have to be ‘ultra okay’ all of the time especially because they are all truly lovely people.

 

 

Author: Gill

I read books and review them. Books are my escape. I have always loved books. I write a blog, I get involved where and when I can in things I feel that are important. I also have Alzheimer's Disease but it does not define who I am. I am in the early stages so you may not notice. So, I will tell you how it is.

15 thoughts on “Disappointed.”

    1. That is easier said than done. Most of my GP’s blame everything I have on my dementia so I don’t like to go and see them which is a worry for my consultant when I do have something wrong. Luckily now a new Dr has joined the practice and she understands and listens.

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        1. I wished she had been there from the start, as it took a long time to get anyone to believe that there was anything wrong. I knew, I know my own mind. I used to be a staff nurse. But because of my age 44 at the time, dementia wasn’t thought of. I was diagnosed at 45 nearly 46. Now I am out there fighting the good fight to help others 🙂

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          1. I believe it is helpful for us all to talk about our experiences and let others know they are not alone. Fighting for awareness by sharing our own stories is a must. Keep on going doing what your doing Tracey 🙂

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          2. That’s why I go out and give talks and write the blogs i do. Admittedly I very rarely write on my blog here, my main blog is on Facebook, and thats an open diary of my day to day stuff. Sometimes dementia related sometimes not. xx

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  1. Lovely to read about so many good things going on in your life, Gill, despite the occasional blips and setbacks. I hadn’t heard about PBA before and will look up more information on it.
    As for the counting backwards test – I’ve never been able to do that other than in fives! I was talking to someone recently about it who told me you can tell the person doing the test you were never good with numbers and they change it to one with letters – giving a word and asking you to spell it backwards.

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  2. Paulan: I recently had my annual appointment with my neurologist – doesn’t that seem like a long time in between appointments? I know he can’t do much for me except to provide me with scrips for Aricept and Namenda. I performed pretty well on the 10 minute test and was told that my dementia hasn’t declined too much. I want to tell you in the past year I have lost the ability to read (and remember), handle change, lost the ability to drive and lost the ability to cook without supervision. How can the doctor turn around and say I haven’t declined in my dementia? I am happy to hear that things are going well for you and would love to chat sometime.

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  3. How about a calendar that is big enough where you can write down your appointments or leave yourself a note to do it. It may not be pretty, but leaving sticky notes in places you can’t miss seeing to remind you to take your meds, etc. could work.

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  4. I have just shared this on my blog site on Facebook as I understood totally what you have written. I am lucky that my consultant knows that if I get tearful its because i am frustrated with having dementia rather than depressed. So he won’t prescribe me tablets if I don’t need them. I have also found out recently that because I strive to retain my independence, I can’t take part in much research because most need a carer or support which I don’t have. Thank you for sharing x

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    1. Hello Tracey,

      Thanks for commenting. I would say it’s great to hear from others feeling and experiencing the same as me but the word ‘great’ somehow doesn’t seem right! But, it feels very comforting to be able to reach out and connect with fellow dementia fighters.

      Gill 🙂

      Liked by 1 person

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