How do you educate the world about Early Onset Alzheimer’s/Dementia – one group at a time?

I thought about the meeting with the pilot group for Early Onset Dementia and Alzheimer’s on Saturday and how it made me feel and now I have had time to mull it over, I can think about it a bit more dispassionately which is what I need to do.  (Please see the last post for details).

Firstly, am I over reacting? Yes I am, but it is true that many people working with professional bodies; statutory and non statutory, such as the Alzheimer’s Society need some education for their workers. I understand how easy it is to fall into a role of; support worker, organiser, being a person who is outside of the disability or target group, and focus group of the particular organisation, but that does not excuse the organisation from being educated to understand how to ‘walk in the shoes’ of those they wish to support by listening more and organising less.

What were my expectations? Sadly I think my expectations were a little too high for my own good! I should have expected less and maybe would have been content with how the meeting panned out. After all it was a pilot to find out what people wanted.

I have always been adamant that my hubby is NOT my carer he is my husband. I cannot think of a time when someone will need to care for me, and right now my present is important for me to wring every last drop of control and living well out of life. I cannot imagine him deciding what I would like to be doing right now, I have my own ideas and they are definitely not the same as his.

I know my last post focussed on individual conversations and did not elaborate on the bigger issue for me, so I thought I should balance that up so that you can understand exactly where I am coming from.

My issue is with the lack of education about Younger Early Onset Dementia/Alzheimer’s. (I think my next blog will be about the difference between the two so don’t go too far away).

Because Alzheimer’s and Dementia is being diagnosed much earlier than it used to be the Support world needs to catch up. Before, people were diagnosed with dementia only when their symptoms were blindingly obvious and by which time they were not able to understand that they themselves had a problem. This is about what is normal for each individual person, what is normal for one person is not for another, so someones difficulties must be outside their own normality. At this stage the family will be heavily involved (hopefully) in getting a diagnosis for their sibling, parent, spouse, child and also they may well be signposted to the world of Support organisations be it in the medical or voluntary sectors. That is when the services of Alzheimer’s Society has been a wonderful support for those families as a whole.

Today, diagnosis can be much earlier, right at the beginning of Alzheimer’s Disease, sometimes with only mild cognitive impairment (MCI), and as such may not be classed as dementia. The labels do not really matter because basically they are all under the same umbrella of dis-eases in the brain.

You walk out of your consultants room with this devastating diagnosis feeling absolutely shell shocked. You have no questions to ask yet, so are given a leaflet if you are lucky about alzheimer’s disease and dementia. You go home to start the first day of your life as a different person with a terminal disease. You may only be in your 40’s, 50’s or 60’s when you should be looking forward to the rest of your life planning what to do with family, work, or retirement.

This is where the services for people with Early Onset Alzheimer’s/Dementia (EOAD) fail because there is practically no provision. The only groups organised by many organisations are for elderly people and their carers in mid to late stages of dementia which is not appropriate for EAOD.

I started to search the internet for anyone who was like me, who I could talk to who understood how I was feeling and what life was like for me and found several wonderful people in online groups who chose to allow ONLY people living with the disease. I found the Dementia Alliance International, Facebook groups and joined them all. I have become involved in Dementia Mentors a group who can talk one-to-one online with newly diagnosed people to give an honest view with how to live well and positively with the disease. We are people from all corners of the world and I am so grateful to have them as friends. These groups are for those living with the disease in its many forms and are organised and run by the same people. I have been given a voice, and I am not a patient.

We all look to educating anyone we can about EOAD, to understand that we need support but we need to be empowered to do it ourselves.

When I was at the meeting with the ALZ Org I realised that they just did not get it. They had no understanding of Young and or EOAD, probably because they were so used to people with more progressive stages of the disease. They are used to organising people and activities to what the carers have said their partners have enjoyed in the past.

Working with Younger EOAD is different because we can mostly communicate well, and our intelligence is not affected, and we NEED to be in control of what we are doing until we no longer are able to. We need to live normally with our dementia the best way we can making our own decisions, we need everybody to LISTEN to what we are saying, understand what we are saying and not dismiss us to talk to our partners.

Partners do have a role to play in groups we attend for medical or social events because a lot of the time they drive us there, they support when we are there and support us at home, but primarily this should be our group, and there is no reason they cannot support each other at the group. I guess I am saying there is nothing wrong in have two separate sides to a social group, living with dementia on one side, carers on the other, coming together at times and respecting each others voices.

I am going to try and make a difference to the group that met through the workers who got it so wrong on the day. If I don’t try then nobody will learn anything.

Wish me luck as I feel it will be a hard slog and long process.

Thanks for listening.

“I feel like something at the bottom of a woman’s handbag”

Saturday – 28th June 2014 – Alzheimer’s Meeting

I was invited to a meeting to form a pilot scheme for younger people with Alzheimer’s and Dementia. It was quite a way to drive and we got to a place which was in fact in a building in a Chemical Company which supports the charity Alzheimer’s Organisation; their conservatory which is on the side of a very nice cafe/restaurant.

There were workers from the Alzheimer’s Organisation from three different surrounding areas in county and I got to talk to two of them. The are all enthusiastic and clearly caring people.  People arrived gradually until there was a good roomful of people living with dementia and their partners and carers. I initially talked to two of the staff full of enthusiasm and I passed a couple of flyers for Dementia Mentors website which they said they would look at. As others arrived they seemed to know each other I think from another group they attend. The conservatory had tables and chairs set out in a cafe setting and people came in and sat randomly around the room or in groups of friends. Because of how we were all sitting facing some with our backs towards others it was not conducive to chatting and getting to know anyone you didn’t know, which for us was everybody. No sooner everyone had arrived, we were told to split up into three groups and talk about what sort of group we wanted. The friends stayed where they were, others gravitated towards the far side of the room and hubby and I were asked if we would join the table behind us with just two people on because the guy had mobility problems. The guy I shall call Sid clearly had mid stage dementia and did not speak or appear to have awareness of what was going on. His partner on the other hand did not stop talking. We had a worker with us who was going to facilitate this discussion between the four of us.   (All names have been changed to protect peoples identity).

Phil the worker was enthusiastic and started throwing some ideas about for us to talk about and ‘Sally’, Sid’s partner started to talk about what she wanted from the group. I don’t want to see leaflets on tables, she said, I don’t want to hear anything about dementia, I want a social group where we can go out and enjoy ourselves. Right, that is perfectly clear. I am tired, she explained, of everyone talking about dementia, I want somewhere where that is not about illness at all.  (Actually Sally, I think you need a support group for carers and some respite care for Sid, I thought at the time).

I had up until this point given some ideas, discussing a newsletter, learning new things in their new life with dementia, such as photography, cooking, creative writing mini courses, days out doing group photography, walking etc. The more Sally talked the more puzzled I began feeling. Hang on, I thought we were here to talk about a group for people with dementia, at least that is what the conversation I had with the ALZ worker I had met after being diagnosed who said there was no support groups suitable for me. I could not assume that Sally was Sid’s carer and I had to know, so I asked her if she had dementia? No, she answered, I am with Sid. I had this sudden realisation that no-one had asked Sid what he wanted, so I asked him. With his progressive dementia he couldn’t really give an answer, he goes to another day care place and does a lot of memory activities with them, and seem to be confused about where he was as he was talking. He sat not speaking having difficulty holding his mug of tea, Sally telling him to put it on the table before he spilt it down himself. I could see my hubby watching and wondered what he was thinking. Sid did not appear to want to put the mug down, or do as he was being told. Sally was off again saying the things she wanted to do, and I spoke to Sid. ‘Only people with people who have dementia can understand what its like to live with it’ I said to him, and he nodded in agreement. I asked him about the day care he goes to and he tried to talk to me about it. He then said, probably the most important thing that was said in that room “I feel like I am something at the bottom of a woman’s handbag”. Do you mean being here I asked him pointing around, ‘No’ he answered. Ahh you mean all the time I put back to him understanding how he was feeling.

The more I listened to Phil and Sally talking, and hearing the animated voices around the room the more I realised my expectations were far too high and I was not enjoying the experience.

The discussion was over, time was up and it was time to go! Before I left I briefly spoke to a worker and said that I thought it was going to be about people living with dementia wanted, and was a little disappointed to hear so many carers saying what they wanted. “I guess it is about both” was the answer.

Okay, how this meeting made me feel:

  • Angry
  • Silenced
  • Invisible
  • Like being treated like a ‘patient’
  • Cheated
  • UPSET

I thought this was going to be about what we, the people with dementia wanted out of a group for support and social activities that we could do with others, and that includes partners and carers who understand that sometimes we say the wrong thing, behave in a way that may not be quite right.  It is right the partners should be there, but let all those who live with dementia, have their own voice, their own control, and their own place to keep their minds active, not something that is organised by everyone else.

How many websites, groups, and advise site both professional and amateur are there for carers. How many forums are for carers?  Many.  Why is this, it is because what do you think when you hear someone has dementia?  You think of an elderly person towards the end stage of the disease, not always knowing who family is, someone who has lost the understanding of what is happening around them, someone who may be shouting out and being difficult and finding it hard to communicate.

Well that is at the end stage, not the beginning, how do you know that you do not already have some kind of Alzheimer’s in the making? Give it a few years and when you know something is ‘not quite right’, something simple such as your visual perception not working right, not keeping up with work, you will be wondering whats wrong. If.. if that happens and you are in your 40’s, 50’s and 60’s you will want people to treat you as they would want treating themselves, not to talk as if you no longer have a voice or part to play in the control over your own life.   Memory Loss is not loss of intelligence, get it?

I just want to finish saying:

I AM NOT INVISIBLE, I AM INTELLIGENT, I CAN STILL TALK TO YOU, UNDERSTAND YOU AND HAVE A DISCUSSION ABOUT WHAT IS GOING ON IN THE WORLD.

Please don’t think that by helping our husbands or partners that it equates to giving support to me.

Thank you for listening if you got to the end of this.

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.

7th February 2014 – holiday preparations

My daughter and I are going to Budapest for a few days for our birthdays and to have time together.  I have completed ‘colour coded spreadsheet pocket checklists’ for me and Claire.  Ok, I admit to being a spreadsheet geek but if you have to take general information/emergency information then a spreadsheet fits that bill.

I have updated and charged up my iPod and Kobo with music and reading material.  I have started to pack my case and am excited to finish it.  Only 3 days to go and I shall be in Budapest with her.   

1st February 2014

January has brought lots of rain and with it floods.  Whole areas in the Somerset levels have not drained away and remain as a new sea.  The radio is full of politician speak; full of meaningless sentences about how they ‘have people and money in place and long term strategies, and plans for the farmers to take responsibility’.  So now it has become ammunition for political parties.  A village has become an island for several weeks with children taken to school by boat.  The authorities have installed Portaloos in the pub car park because the villagers can no longer use their toilets.  The Army has been invited in to help with logistics, and the argument rages on about whose fault it is.  The truth is, we use more land for crops and animals having ripped out the hedgerows, and ignored maintenance of ditches, plus we have more rainfall in the past few years.  Rivers and canals have stopped being dredged and along with the loss of the trees that thrive on the excess water has created a problem.  Historical land management can still teach us lessons if we choose to listen.  

Russell Brand has been slated by the media because he said that young people should not vote as it is a waste of time with only ‘one political party with three heads’.  They say he is irresponsible to tell the youth this and encourage the young to vote to change things, but I don’t think the politicians ‘get it’ at all.

Both Mr Hsg and I cannot listen to Radio 4 early morning because it is simply political garbage.  Does no one speak honestly anymore?  Presenters ask a question and there is no direct answer only party line answers.  It’s a game that nobody wins and everybody loses.

Same appointments different places – 17/01/2014

I forgot my first appointment of the year on the 2nd January the at Mental Health Services.  Chelle phoned and we arranged another appointment.  She was very serious as she spoke about us about thinking about care later on when I need a full time carer.  I tried to say that Mr Hsg will never be my carer because he would not be able to cope, but I think other people find it difficult to acknowledge that a spouse simply would not be able to care for someone with dementia; of course they would for as long as they were able then residential care would have to take over.  Wrong.  I already know he is not able to take anything over from me now, he does not get involved in remembering when my appointments are, where they are or who they are with and he is already saying “what do you get from going to see any of these people, you don’t get anything from it”.  I try to explain why it is necessary right now, making sure the services are there for when I need it, getting my medication right, or simply monitoring any changes. It is only because I have transferred to local hospital services that I am seeing these people for the first time.  I think Michelle finally got what I was saying when she said that we had to think about what would happen to me at that point, to which I replied that I would have to go into residential care somewhere.  She said she would contact the dietician to talk about how to write down about my Irritable Bowel Disease and my intolerances in a way that would be taken seriously at a time when I can no longer cook.

The next day I had an appointment at the Doctors Surgery for a dementia screening.  When they phoned me with the appointment I said “I don’t have dementia, I only have AD at present”.  The doctor was lovely but clearly thrown by my lack of dementia.  She attempted to explain to me that you cannot have Alzheimer’s without Dementia.  So I had to explain to her how I managed to get a diagnosis of AD without Dementia.  She diligently read all the letters on my file, and concurred that I was very unusual.  However, this appointment felt like we were saying the same things two days running; no wonder we are both fed up with appointments.

Chelle said that I had an appointment with my Consultant at Oaklands, although I had not received an appointment letter.  Having seen her in Derby previously I Googled it and found Oaklands, Mental Health Services, so we set off.  When we got there it did not seem to be the right place and we went into the office to find out where we should be.  They looked me up on the computer and said I should be at Oaklands in Swadlincote!  She printed out the letter which I had never received and in capital letters at the top it said “Please note new venue for this appointment”.  Back in the car we drove from Derby to Swadlincote and found Oaklands Village a new retirement village.  Oh my, it was impressive, wood and glass, and full of seemingly happy people.  A bistro restaurant, café, hairdressers, library, crafting rooms; I could see people sewing in one, soft furnishings with groups of seating for people to sit and chat, and apartments.  They have a surgery for visiting consultants and my Doctor has a weekly surgery there.  We discussed my medication and talked about support groups, she introduced me to someone from the Alzheimer’s Organization who has an office there. She talked about the groups around neighbouring areas and what they do, but it became apparent that these groups are for stimulating memory for people who are further on in their Alzheimers journey.  I talked about what I would like; a more social type of group who could understand each other difficulties, to be able to talk without worrying what people think when you cannot find a word and gaze into the distance as you are desperately searching for it, not worrying that they will stop talking to you because your conversations become difficult, with the flow of words drying up mid-sentence.  Elaine understood exactly how I was feeling about it, which was so nice.  She said I was unique in the fact I was diagnosed so early that there may not be anyone else as early diagnosed as I am.  There’s a challenge if ever I see one!  She said she would talk to her line manager about it, just because there is no group that doesn’t mean that one cannot be set up.  I told her about my writing and she was amazed commenting that I was writing a PHD….food for thought there (not for a PHD exactly but I could do my own study as I go)!

Time has flown by, I need to catch up!

Christmas 2013

What a conundrum this year, my daughter has asked us to spend Christmas with her in London.  Mr Hsg has always made a point saying he never wants to go to London, so what to do?  The solution was that Mr Hsg would take me to London on Tuesday – Christmas Eve and return home, and would pick me up on Friday.  That way he would not have the stress of being somewhere unfamiliar and could remain with the cats.

How fabulous are these slipper socks!

 

We got up, made tea and coffee, and opened our presents.  C had knitted me a pair of slipper booties, they are brilliant!  She also made chutney this year which has delighted me immensely.   Such thought and effort that she put into my present.  She made chocolate truffles for her boyfriend’s parents that looked divine in the box she had carefully chosen.

P1080064
That dinner was far too big!!

Her boyfriend went to his parents to have Christmas dinner, whilst C and I cooked dinner together enjoying catching up with chats that I miss so much.

We had been invited to join C’s boyfriend’s parents for drinks, as this is a serious relationship they naturally wanted to meet me.  I admit I was very apprehensive as there would be several other people there and I struggle sometimes to chat normally with people I don’t know.  The stress makes my loss of words worse unable to finish a sentence.  “Don’t worry” C says to me, “everybody loses words when they talk, I think you make too much of it”.  She has always found it hard to acknowledge any illnesses that I have had, and ignoring them to make them go away.  I have to talk to her about it sometimes though so that she understands my behaviour.

We walked from her house to Greenwich Village to J’s parents house, I felt sick with apprehension and too much food!  I realised that at home my plate is small but our Xmas dinner were plated on normal size dinner plates – delicious but not good for my digestion.  Of course I declined the suggestion that we get a cab, and welcomed the 30 minute walk.  The evening passed very pleasantly with lovely friendly people and a large glass of water.

Boxing Night was a real treat with a trip to the Haymarket Theatre to see ‘One man, two Guvnors’ with J’s parents.  It was excellent and very funny, a great way to spend time.

It was so lovely to be with my daughter, but I looked forward to going home with the peace of the boat and our quiet lifestyle.

When I think of being with people I don’t know I worry that I say the wrong things, inappropriate and isolate myself.