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)!