Regarding My Father

Dear Readers,

Thu, 13 Dec 2012 22:31:15 +0000

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!)

Long overdue update

Thu, 13 Sep 2012 17:18:59 +0100

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!!!

It’s been an eventful few weeks. I had my first week off...

Sun, 12 Aug 2012 20:46:07 +0100

It’s been an eventful few weeks. I had my first week off of the year and was looking forward to the trip on the North Yorkshire Moors Railway that I had planned for dad. dog, my friends Luke and a family friend. The day went well, we set off early, enjoyed the train (dog was very confused) and headed to Goathland (the home of Heartbeat). Halfway on a walk to the waterfall, dad stumbled and almost fell, becoming disorientated and weak. We managed to get him to a bench and gave him a bottle of water. After a while he insisted he was fine and would like to continue the walk. We decided to have a sit down at a pub and grab some lunch so we headed to Buck Hole. After lunch we were sitting enjoying being outside when dad passed out again, this time worse. We wanted to call an ambulance but he insisted that he didn’t want us to. We managed to get a lift to the train station, get back to Pickering and back to the car. I dropped everyone off at home and took him straight to a&e.

At a&e we were seen by a triage nurse who tested him blood glucose (he had all the classic signs of diabetes to me) and took his blood pressure - all normal. She felt that we didn’t really need to see a doctor but could if we wanted to. We chose to stay. We soon saw the doctor who took some bloods, did an ECG and took his blood pressure again. He didn’t really tell me much but chose to admit dad. We were moved to a ward and dad was given a bed. I was allowed to stay until he was seen by a medicine doctor which should be soon….

7 and a half hours later we were seen by the resident who asked the same questions, did the same tests and again told me very little. I was asked to leave even though I asked to stay as dad was becoming restless and stressed out. I was asked to call back in the morning.

Come the morning they had no more information to give me but would i please come in asap as they were having trouble keeping dad in his bed as he was so stressed out and disorientated. When I arrived I asked to see a doctor. The nurses were all lovely and after about 2 hours I finally got to see a doctor. They felt that he had had an adverse reaction to his Reminyl XL as it had started having negative effects as was not working anymore… FUMING. I had been telling the consultant for 6 months that his medication wasn’t working.

Anyway, They discontinued his medication, discharged him and told me that there would be no follow up. 2 days later a letter has arrived for an appointment at the cardiology department!

Please sponsor us for the memory walk!!!!!

Fri, 27 Jul 2012 13:33:00 +0100

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

So dads care started on Monday. So far it is going pretty well I...

Fri, 27 Jul 2012 13:26:00 +0100

So dads care started on Monday. So far it is going pretty well I think - he is definitely enjoying the attention! My uncle came up for his hospital appointment on Wednesday so I am waiting to talk to him on Sunday to find out what he thinks/how the appointment went. As far as I understand it, we will no longer be under the care of our current consultant as he ‘does not deal with patients on Memantine’. I don’t know whether that is because the drug is so new that it needs a more specialist person or whether he has simply got sick of us!

I feel dad has deteriorated a fair bit in the last month so it is probably about time for a medicine change. This morning on the phone he asked me 4 times ‘what were we talking about?’ and he struggled to remember his brothers name. I hope that I’m the last person he forgets.

I invested in a proper ‘Alzheimer’s clock’. Basically it tells you the day of the week, the date in a more human format (!! eg 26th July 2012) and tells you the time in 12hr format. It’s also pretty big but I will post a photo of it at a later date when I actually go home to set it up. He is really struggling to read the clock now (he told me that he has never seen a clock with hands before - this coming from a clock maker…….) and he struggles to know the day of the week (in his world it is always Thursday).

Other than all this I feel that he is doing really well. He still cooks and cleans for himself, his level of hygiene is mostly good and he is able to buy his own groceries. He is also in the peak of physical health (excluding the slowly expanding gap in his brain…..).

I’ve had a few wobbles of late but remind myself that as long as he is happy, he doesn’t know any different now and can not remember the person he once was. I will deal with all of the sad stuff at some point but for now we will just carry on as we are, take each day as it is, and (ironically) create more memories for him to forget and me to remember.

Just a quick update. We have carers coming in twice a day...

Tue, 17 Jul 2012 20:28:53 +0100

Just a quick update. We have carers coming in twice a day starting on 23rd July to help dad take his medication as he will be starting on Memantine(!!!!!!!) and the start up protocol is pretty awful. He is being a bit weird about it, he’s super uncomfortable about having a stranger in the house and he is adamant that he is doing fine on his own. I feel sad about it, I’m so proud of him and I do feel that he manages amazingly, but it really is a weight off knowing that someone will be looking in on him every day.

Care Ahoy

Sun, 24 Jun 2012 21:26:00 +0100

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!

Please sponsor my friends and I for the London Memory Walk!!!!!

Thu, 24 May 2012 00:51:04 +0100

Please sponsor my friends and I for the London Memory Walk!!!!!

So my uncle has agreed to go to dads hospital appointments from...

Sat, 19 May 2012 17:08:00 +0100

So my uncle has agreed to go to dads hospital appointments from now on. 2 weeks ago I think he achieved more in one hour than I have in 18 months.

To set the scene, my uncle is from Dundee, he’s got hands like spades and a fearsome beard. Not a man to be messed with. When the doctor was useless, he actually growled the phrase “well that’s just not good enough sunshine…..”.

Therefore, dad has now been referred to the psychiatric department who will organise for a nurse to come and see him once a week and he’s getting an upgrade on his medication!!!!!

Watch this...

Sun, 29 Apr 2012 21:50:14 +0100

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/

Super mad at the GP

Mon, 02 Apr 2012 19:43:02 +0100

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.

Attendance Allowance

Mon, 02 Apr 2012 19:34:03 +0100

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!!!

Attendance Allowance....

Sat, 03 Mar 2012 16:42:44 +0000

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

(and in the post…)

They say 10 days to hear.

I’ve been struggling a lot recently. Dad has taken a bit...

Sat, 25 Feb 2012 17:25:00 +0000

I’ve been struggling a lot recently. Dad has taken a bit of a downward turn of late and his doctor doesn’t seem to have noticed at all. When I got the consultants letter through I had a hard time believing he was actually writing about my dad.

Sometimes I feel like my life is a maze. I know in the end I need to reach that magical point where I’ve graduated as a vet and I have sorted out everything re. my dad. But along the way I get lost - I’ve lost a large part of who I am, I’ve lost a huge piece of my sense of identity and I think I’ve also lost my marbles somewhere along the way…….

My life is a series of lists. Lists of things that need to be done; lists of the lists that I need to look at; backdates lists; future lists; complete lists; lists that will never be completed unless someone finds Bernards watch for me. I bought a cork board this week so that I can pin up my lists so I can see them all the time and hopefully chip away at them little bit by little bit. It’s hard.

The massive thing on my list is to get my Attendance Allowance forms filled out but I’ve lost the list with the details I needed scribbled on.

I think the next list I write will have everything written in minute detail so I feel like I am achieving more than I realistically am. I think our cleaner thinks I’m crazy.

On the plus side, I have almost completed my living room list - I just ordered new sofa covers. A brochure with a 25% discount on our exact sofa covers arrived in the post yesterday. The first little piece of positive fate that I’ve felt in a while.

Sleep walking has been an issue with dad for the last year and a...

Sat, 18 Feb 2012 13:19:17 +0000

Sleep walking has been an issue with dad for the last year and a half or so. I was worried that he might fall down the stairs hence moving his bedroom downstairs. Also, I am a very light sleeper so his night time excursions were majorly disrupting my sleep patterns and affecting my work. He still comes upstairs sometimes and turns my light on and off before going back to bed, but not nearly as much as before.

I haven’t read much about sleep walking in Alzheimers patients but I suppose that it would go part and parcel with the disorientation and paranoia that they feel - these things must project and continue into sleep.

Sometimes the stories dad comes up with are pretty funny. He is usually coherent but what he says makes no sense. Once he thought that The Door Thief had come and stolen all of our doors, so we had to go round the whole house and check that the doors were still there. Another time he thought that i had hung chains from the ceiling and he couldn’t get to the bathroom because of them. Last night, he got the clean washing from the dryer and threw it all over the floor, then in the morning he asked me why I had done it.

It is something that I have had to get used to, and at times it does irritate me and I snap at him (although I’m always quick to apologize). He has no recollection of his wanderings when he wakes up, although on those mornings he is a little more disorientated and takes a while longer to come out of his sleepy daze. I’m glad the dog is there as I know that she provides comfort and reassurance for him - she is very attuned to when he is having a bad day or a wobbly moment.

I did speak to the doctor about his sleepwalking and they suggested sedatives at night but we refused. I think that a sedative would disorientate him further and that it was probably pretty stupid of them to even suggest that.

Driving Licence Update

Sun, 12 Feb 2012 22:16:33 +0000

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

No driving in bad weather
No driving in anything other than full daylight
No driving on a bad day
No driving out of our town unless accompanied by a consenting adult
Always wear glasses
Always wear a seat belt
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!

Dirty Secrets

Wed, 08 Feb 2012 17:36:21 +0000

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!

Click on the picture for an article my friend kindly just sent...

Fri, 03 Feb 2012 09:40:17 +0000

Click on the picture for an article my friend kindly just sent me about a breakthrough in Alzheimer’s research that may pave the way to new forms of successful treatment

TEETH TEETH TEETH One of the baines of my life. Dad has always...

Tue, 31 Jan 2012 15:28:35 +0000

TEETH TEETH TEETH

One of the baines of my life. Dad has always been terrible with his teeth. Being working class from Dundee coupled with an extremely sweet tooth does not bode well for dental hygiene…..

Last year I had a real problem getting dad to brush his teeth regularly and ended up having to be quite harsh and tell him that he looks gross and his breath stinks (i’ve found that being melodramatic does wonders in getting him to do things). From then he brushes his teeth twice a day (albeit for about 30 seconds each time) and is a bit more conscious of his breath. I took him to the dentist in December and he needed 4 fillings!!!! EXPENSIVE even on the NHS. However, yesterday he went to his follow up hygienist appointment and he only needed a quick scale and polish, and no fillings so it’s all good. I did tell him it cost £70 though as money seems to be one of the only things that scares him into taking action - I’ve never seen him brush his teeth so well as last night!!!!!

Dads hygiene in other respects isn’t too bad. I’m currently trying to wean him from his gross fleece jacket but may just have to take the plunge and make him go cold turkey. Otherwise, he does take more care in his appearance than he has done in the past and has started wearing proper trousers and jeans rather than jogging bottoms-POSITIVE!!

I sent off dads driving licence renewal forms on 17/10/11 and...

Sat, 21 Jan 2012 20:04:14 +0000

I sent off dads driving licence renewal forms on 17/10/11 and still haven’t received a yay or nay. We got a letter saying that it had been received and was awaiting processing, and then when his licence expired on new years eve, we got a letter saying that he can still drive as long as he carries the letter. Dad doesn’t actually drive that much, maybe just once a week if that, he doesn’t really have the need. Someone crashed into him last year and he lost his confidence a lot since then so I don’t think it will be long before he decides he doesn’t want to drive at all. We have already spoken about him stopping and he seems to feel that this is a good idea, he just doesn’t like walking to the shops in the rain!!!