Regarding My Father

I apologise for how long this has taken! It’s been a strange few months with lots of ups and downs. 

Dad has deteriorated, as was to be expected, but this knowledge stills comes with its own sting. The mess up with his medication set us back, after that he never really returned to the same plane of brain power that he was at before. the memantine dose has been adjusted, hopefully we are now at a level where he will stay as stable as possible, although I know in my heart and my head that the next 6-12 months are going to be the last months that I have with the father that he has become.

Too many things have happened to go into, more of them sad than funny so I won’t tell you about that. He still lies about his icecream consumption (he has turned into quite the naughty school boy), pretends that the dog has stolen everything (she hid his keys the other day), and tells me that he has never seen a clock with hands (he was a clockmaker…). These are all the silver linings.

I am grateful for the childhood I’ve had, the parents I have had the pleasure and honour to spend time with. I’ve known 2 versions of my dad so far, the latest far kinder and gentler than the first, but the first far stronger and solid. It has done wonders for my DIY and phone skills (although we did have to get builders in to fix the fence….).

I’ve become good at getting what I want. It would seem that a primary carer is rarely in their early 20’s. People are starting to learn that I will not be swayed like a child, and that I will certainly not give up until I have the best for the person that means the most to me in the world.

Dog is still excellent. She truly has been the best therapy for him, god knows where we would be without her. It has been suggested that he goes into a home to take the burden from me, we may as well stop all medication if he couldn’t be with dog.

My course is going well, I’m about 6 months from qualifying as a real life vet! My plan is to go home for a few months to get things in order while trying to find a job nearby. We will see.

The care dad has been getting has been variable but it is slowly improving. We had a scare when he lost a lot of weight and passed out - turned out he wasn’t being fed properly. He has since put some weight on and is fairly rosey in the cheeks.

Dads shaving has become a high point of my visits. His side burns are being shave shorted and shorter - we are now just above his ears. I’ve told him we will be sending him to a monastery if he shaves anymore. He thinks this is great fun but really doesn’t see what all the fuss is about. Men!

That’s enough for now. I’ll try harder in the future!! (although the festive season is hit or miss in its enjoyability chez moi!)

So a lot had happened since the train episode. Dad received a referral appointment with the cardiorespiratory department. They attached a 24hr ECG monitor and we are waiting to hear back on the results. The doctor is away on holiday for a month and obviously nobody else would be able to look at the ECG.

He has finished his first month on Mamantine. I haven’t noticed that it has made a difference yet but only time will tell. He is getting on well with his carers and after a few bumps in the road it appears to be going well.

I took him to a local herb nursery at the weekend, and, classic dad, he chose 3 massive bushes of alpine strawberries so that he can have them all year round. He will be extra confused once he realised that they don’t really grow much bigger than the tip of a finger!!!

http://www.justgiving.com/memorywalk2012/eurl.axd/bf5b5fd8fe01a44499e8ee1209a67e64

I got a call on Wednesday from my dads mental health care nurse - she is super lovely and part of the team at the Memory Clinic where dad is now registered. She checks on him every 2 weeks and sees him in a formal setting every 3 months to re-evaluate him. They are concerned that dad hasn’t been taking his medication every day. The consultant has finally referred him for new medication so we need to sort out a carer to be present while he takes his medication A) to make sure he is taking it and B) because the new medication has a hectic start up schedule that dad will not be able to keep to on his own. They have also suggested that having a carer in now would be a good thing to make sure dad gets used to having a ‘stranger’ in the house and to having someone help him.

When asked what our major stipulation for a carer was, dads immediate reply was ‘FEMALE!!!’. Hahaha

I have spun it to dad as if he is doing the NHS a favour by letting them come over. He thinks he doesn’t need help at the moment, which is partially true, but I have had to tell him to ‘go along with it for their sakes’. He is now convinced that the care option was his idea in the first place and that it’s great! (provided he has a young female nurse…..perv!)

I have a meeting on 5th July with his nurses, my amazing care support worker and my uncle, who is handling dads hospital care when I am away from home.

I really can’t speak highly enough about the care support provided by the staff at Age UK. They honestly and truly have changed my life, making this horrible situation that bit more bearable. I couldn’t do this without them and I am eternally grateful!

A beautiful piece of documentary, done with care and realism. The side of Alzheimer’s most people do not see.

http://www.bbc.co.uk/iplayer/episode/b01gvt26/Louis_Theroux_Louis_Theroux_Extreme_Love_Dementia/

My dad was diagnosed at the Kent and Medways memory clinic - an NHS facility designed specially as a department for people with dementia and memory related diseases. They offer services such as specialist consultants, home visits and carers support/advice. When dad decided that he did not want to move to Kent but wanted to stay up north, we were warned that the service in the north had lower funding so would not be as good, but there still was a memory clinic that he could attend, to which our local GP had to refer us to. When he moved back home I contacted the GP and asked her to send the refferal through to the local Memory Clinic. A few weeks later we were sent an appointment to the local hospital at which dad would see an adult medicine consultant. I assumed that this was what they were talking about when they said it wouldn’t e as good ie. dad would not see a specialist.

After 18 months and a lot of terrible service and little advice. I took to google and delved into the depths of my local NHS and found that not only had dad been referred to the wrong department, but that there was in fact a fully functioning Memory Clinic down the road from the hospital which nobody had bothered to mention. Not only had the GP referred us to the wrong place, but the hospital had not rectified the mistake. I am truly disgusted.

I got onto the GP about this - she was super shady and defensive - and got her to send a referral through to the ACTUAL Memory Clinic. We should hear about an appointment soon.

The level of Alzheimers care in the UK is shocking and frankly pretty frightening. For a disease with such high prevalence, you think that there would be more interest in trying to control and manage the problem as well as possible.

Fuming.

Success!!! I got attendance allowance which is amazing as it is notoriously difficult to get it for diseases such as dementia, where the signs are variable day to day and the amount of care neccessary depends on how the patient is that day. What’s more, we have been put in the top bracket. 73 a week may not be a lot to some people, but for me and my dad, it is life changing. This has reallt taken a huge weight from my shoulders, as we can now afford council tax and all of the other utilities!!!

DONE!!!!!!!!!!!!!

(and in the post…)

They say 10 days to hear.

Dads licence has been renewed for a year. I am genuinely shocked that he got it back! We sat down and had a chat about it and have agreed on a number of points

1. No driving in bad weather
2. No driving in anything other than full daylight
3. No driving on a bad day
4. No driving out of our town unless accompanied by a consenting adult
5. Always wear glasses
6. Always wear a seat belt
7. If you don’t feel comfortable at any point in your journey, find somewhere safe to pull over, get out, and call me!

So far this is proving to be successful. If I’m honest I don’t feel unsafe in the car with him and he says he feels alright driving at the moment. I am so proud of how sensible he is, he doesn’t push it and is fully aware of when he shouldn’t drive - he is very accepting of the limitations of his disease on a bad day.

That said, I doubt he will drive for another year as I see him losing his confidence on a regular basis. He doesn’t really need to drive anywhere either - we have all we need in our small market town and there are hopefully enough friends around to help him should he get stuck!

So I was tidying out my dads cupboards because he has moved downstairs and I have taken over his old room upstairs. I went out for a bit and when i came back there was a mysterious red silk bag on one of the shelves…….

I picked it up and it was pretty heavy. Being as naive as I am I decided to open it - finding and massive 70’s style dildo, in realistic flesh tone with tooo much detail. I shrieked and lobbed it in the bin. After I’d stopped laughing and had gotten off the phone from my friend, I decided to ignore what had happened as I didn’t want to have that awkward conversation with dad…

I went downstairs only to be confronted with my dad smiling knowingly at some inside joke

“What’s so funny dad?”

“Did you um, get a little shock upstairs just now?”

“Well yes, now that you mention it, a mysterious red silk bag had appeared on the shelf. I’e thrown it away, I doubt you’ll be needing it.”

“AHAHAHAHAHAHAHAHA got you!!!! Thought I’d get my own back!!!”

Ahhh the joys of my dads new and weird warped sense of humour, courtesy of the bain of my life that is Alzheimer’s. You have to see the funny alongside the sad. And to be honest, how many people can actually say that their dad hid a dildo in their cupboard for a laugh!

Heard back from the brain donation people about applying for my dad and me. I can’t do it as I’m too young but dad is the perfect candidate so I’m going to get the application sent off sometime over christmas and wait to set up his first appointment. When I spoke to him about it he just said “I don’t really care what you do with me when I die haha so I might aswell help someone!”.

Not chinese, but national Geographic….. to be fair science IS like a foreign language to him…..

When I called Dad this morning he said a huge letter had arrived for me. He also said that it was in Chinese……..

Reading and writing were some of the first things to go with dad. He can vaguely read things given a bit of time, but only he can really understand his writing as it looks like code to me and everyone else. For my birthday my gran sat with him for half an hour teaching him how to write a card. The end result was the best present I could have asked for. Still, it’s hard seeing someone so strong become so vulnerable. I am grateful he has a sense of humour about it.

Anyway, he has taken the letter to my gran so she can read it over the phone to me. I can’t wait to hear her read chinese.

I am 23, studying to be a vet, and the primary carer for my father who was diagnosed with Alzheimer’s disease March 2010 at the age of 65. I have an excellent family who unfortunately live too far away. My dad is my best friend, a maverick in my life who I love with all my heart. I am going to write about and document our lives, the good times and the bad, so that one day I’ll have a record of all the things we did before the end.