January 2018 – Handbagwarrior; verbal ramblings

Food, dementia and me

Whilst my brain seems to be remarkably good still, other things about my dementia continues to ‘trouble me’. When I say trouble me, I don’t actually mean they trouble me, I mean they are not quite normal for people in general.

I think food and eating with dementia is a very complex thing, much more so than people realise, especially when you live alone. The usual questions at the GP or Memory Clinic appointments are:

Q. Do you cook for yourself okay? A. yes

Whether or not I finish eating it or not is another matter, or indeed whether I can save some of the excess to keep for another day.

I still don’t get hungry and have to look at the time to see whether I should eat or not. I could quite happily go all day without food. On average I would say that half the time I have one cooked meal a day and nothing else, the other half I manage to get a Gluten Free sandwich or snack at lunchtime. There lies another problem being Gluten Free I don’t always have any bread and everything else is a poor quick snack substitute so I don’t bother. Regulating how much I eat can be tricky sometimes, especially if there is something I really like the taste of because I just want to experience that taste till whatever it is has all been consumed. For instance I cooked a ham joint and wanted to finish the whole thing because I like the taste, I did manage not to though ! A lot of food has lost its taste for me and things I used to enjoy seem..tasteless and I can’t really be bothered to finish eating something that doesn’t have that – taste appeal.

Drinking enough fluid can be a problem although I try my hardest to drink a fair amount of water and other drinks, weak coffee or fruit teas, throughout the day. It is, for me, something that it a conscious effort I have to make.

So when you ask a person in the very early stages of dementia if they have eaten, or are they okay with cooking for themselves fine, understand that the answers are far more complex than the question.

Note: I am not managing to lose any weight so I am definitely not starving myself!!

January 2018: what it means living with dementia for me this month

What is left out..

Moving to a new home and new GP surgery. Moving Doctor’s surgeries is always fraught with problems of nobody knowing who you are, how you are, and your medical history. Medication history has to include your doctors knowledge of you personally, especially when a new doctor can only read what has been written not what was left out. So I see my new GP and talk to him about myself and my dementia.

I have always had my medication in a weekly blister pack given in four weekly lots. So when my new blister pack is delivered there is a week at a time. This means I have to be in my house every Thursday to receive a weeks dose of medication. This is not acceptable to me to because it mean I cannot leave the house that day until the medication has been delivered. I challenged this with the Surgery and the pharmacy and was told that the Doctor advised that I could only have one pack at a time – why? Because I have Alzheimer’s.

What does this say about me? 1. I am incapable of taking my medication one pack at a time. 2. My dementia is worse that it is. 3. My doctor has not listened to me or does not believe a word I say.

What does this say about the service in the area I live in now? I have worked hard with my old local services to make things better for people with dementia. It appears that in the north east of England the services fall way short of what they should do. The disparity of quality of services across our country is abysmal quite frankly. This is not about how much money a service has it is about how much training they have had in dementia awareness.

Incidentally, I had recently had an appointment with the Memory Clinic and the Psychiatrist (sadly) said that even the tests scoring are different from what I had been used to were not used, and that the service ‘here’ for younger people is poor. I thank her for her candour. I am no worse than my last tests, which means I am still very early on. This for me is a relief to hear. She left me with the usual that I will have the 6 monthly follow ups to see how I am doing, ‘sorry there is no support for you whatsoever’.

Hey ho, I can see that it may be an upward battle to get my GP up to date with how to include people with Dementia into surgery practises.

What is left out? Knowing someone, putting down on paper that this person is capable of taking medication, they are at a very early stage and to treat this person as not yet needing the support of taking control of medication etc.

Finishing up 2017..

Heck that year just flew by. One minute I had started 2017 then POW it was over! I expect there are many of you thinking exactly the same with maybe: Wasn’t that a great year, or thank goodness that is over! For me it was thank goodness that is over for part of it, but also that was great for other parts.

I said I would tell you about my holiday first of all, although it seems a long time ago now. We sailed from Copenhagen on the ship Serenade of the Seas, to Oslo then Kristiansand where I had so much fun on a Sailing for two days to Reykjavik, a couple of days there, then on to Akureyri in Iceland. Wonderful place! Always wanted to visit Iceland and it did not disappoint. Whale watching – what can I say! Only two small boats at a time allowed in any area, we were suited up in red all-in-ones on the top of a small boat…and then we see the spray from a whale. Oh oh I can picture it today as if I am there. After seeing a couple of whales from a short distance there just beside us is a whale, so close I can see his eye. Our guide is excited, this is a new whale he tells us, we have not seen this one before. The whale circles us, coming up and diving down, it is so close to the boat. The guide is talking on his radio telling of this new whale visiting the bay in Iceland. There are no big splashes, just gentle rolls, and dives, it appears that this new whale is curious about the boat and is checking us out. Our guide is just as excited as we are seeing a whale close up for the first time. This is so unusual he says and I am bursting inside with wonder, awe, excitement and contentment.

One thing different about this holiday is that I stopped looking through a camera and took fewer pictures because you miss so much with a camera stuck to your face. I took photos but it can never show the scale or the feeling standing there in the freezing weather seeing this awesome creature.

I loved Norway and want to go back, it is beautiful and there is so much to see. I loved Iceland it is everything I thought it would be and it would be wonderful to see more of it.

From Iceland we spent four days at sea with 15′ swell of waves, thrilling! toward Canada. Nova Scotia is a wonderful place to visit. Halifax is delightful and we visited the graveyard for the victims of the Titanic, oh it was moving and so worth a visit. We all know what happened but to see the names on the gravestones is just something else. We had to visit Peggy’s Cove which it seems is where everyone visits and I think it is because it is like the dream place we would all like to live in. Beautiful albeit dangerous coastline with picturesque wood board houses painted delightful colours, wild and free that is the feeling you get there. I see the lakes from the bus and the houses in the trees with their jetties and dream of sitting at my window looking across.

Boston our destination does not disappoint. We stay in a private house for four days that is delightful and full of interesting pictures and books. A graveyard ghost tour at night is so much fun, and going to the Fenway Ball Park to see the Boston Red Sox win a game was awesome. We followed the Boston Freedom Trail through the city, stopping frequently to rest up, drink coffee, eat cannolis, drink more coffee, rest up more…visit small museums and take in the ambience that is very Boston. As truly wonderful holiday with my daughter and I didn’t get lost once!

My head seems full of dreams these days. I feel like I want to pack so much of life in as if tomorrow will never happen.

Well that was what I achieved going on a cruise last year. This year will be different having moved house to a new area I will concentrate on decorating and settling in. I have yet to meet people and make new friends here. Sadly there does not seem to be any services that are appropriate for me and my dementia here. I so miss the wonderful friends I made in the YPWD group in Berkshire (Young People with Dementia) and the activities that I enjoyed so much. Berkshire are so so lucky to have such a service and credit to those who set it up, run it and work so hard to give us something to look forward to in a warm and meaningful way.

The move..that’s for next time.