Vascular Dementia: The Journey

Sorry to sound so negative but I'm starting to think that the 'end is nigh' with my poor old Dad. Well, the 'nigh' might not be too far away anyway.

In addition to his Vascular Dementia and Alzheimer's, as mentioned in previous posts, this year Dad has survived pneumonia, a mild stroke and heart surgery. He's been back in hospital today with 'poor kidney function' and an 'enlarged prostate'. Well that explains his needing the loo every half hour. He had over a litre of urine drained from his body. He's suffering, and Mom is falling apart at the seams.

There is a programme on BBC1 at 10.45 pm tomorrow called 'My Granddad, Dementia & Me'
It may be uncomfortable viewing but I'm interested in watching it. It's about a young man following his 79-year-old Grandad's journey into Vascular Dementia. Let's see how this compare's with my 89-year-old dad's journey.

TAVI

It’s been 12 weeks since my last post. Where to begin? Dad had his TAVI (transcatheter aortic valve implantation) in April and he’s made a good recovery. My mom and I have been looking forward to this for so long. In our distorted thinking, we believed that Dad’s dementia would improve.  Of course, it hasn’t – he’s much worse. The operation means that he is no longer struggling to breathe, which is fantastic. However, he is struggling to think, walk, talk and go to the toilet. 

I do at times, have to smile at his behaviour. For instance, he went through a period of getting up early, having breakfast, going back to bed, getting up, having breakfast, back to bed, more breakfast etc. At lunch-time my mom would ask what he wanted to eat and he would respond, “I can’t say I’m hungry”. He was too blumin full of Weetabix, that’s why!  Other times he has got up and put his trousers on over his pyjamas, or put shorts on back to front. Things are much worse now. He’s not capable of getting his own breakfast or making any decisions about what to wear even if they are the wrong way round.  Now Dad frequently has ‘accidents’ so Mom is constantly washing his pants and trousers. She encourages him to wear incontinence pants, which are a Godsend.

 

I took Dad for a walk to the park on Tuesday (to give Mom a break) and it was quite hard going. He clung on to me and needed regular rests on park benches. I go over 2-3 times a week (a 50-mile round trip) but it never feels enough. If I lived nearer, it would be every day and I always feel a terrible guilt that I have to go to work.

Dad will be 90 on 24th August. I feel blessed to still have 2 living parents but oh God, I would not wish this bloody awful dementia on my worst enemy. It’s been heart-breaking to witness Dad losing his mind and Mom (almost) fall apart with stress and anxiety. God knows what will happen if my mom becomes ill but I dare not think about that……

A Very Good Friday

Trevor and I went to a Good Friday service at Church this morning. It's always a solemn occasion.  The minister can't exactly extract humour from the story of a man suffering an excruciating death on the cross. Jesus was a man who at one point felt he had been deserted by his father. I think us post-Jesus people are very lucky.... at least we know that there was a happy ending (or should that be beginning?) 3 days later 😊

This afternoon was a very happy time.  Trevor and I took Mom and Dad out for a Good Friday Fish and Chips lunch in Solihull. Yes, took them OUT! There has been an improvement in Dad's physical health since my last post 2 months ago.  (There was a blip a couple of weeks ago when he suffered a small stroke but he recovered quickly). Though a little doddery, Dad is able to walk without a frame and is no longer housebound. He has gained a little weight too and doesn't resemble a famine victim. More good news is that FINALLY he has been given a date for a new heart valve implant - next Friday! He has a diseased valve which means, without tablets, fluid collects in his lungs and he can't breathe. Even with tablets he struggles to breathe at times, so the new valve will make a massive difference. The procedure isn't without risk, ie. major stroke, heart attack, bleeding and acute kidney failure but let's not think about that and stay positive!

Dad's dementia will not improve. There is no short-term memory and he is unable to think rationally or make decisions. He doesn't remember that he has to go into hospital for an operation. Trevor is brilliant with him though and always manages to ignite memories from the past. Today's subject was cars and Dad managed to list some cars he previously owned.

I hope and pray that my father's mind will not desert those he loves and that there will be a happy ending to next week's operation. A x

Zimmer down now.....

Dad seemed ever-so-slightly better today... a bit more lucid and strong.  He can't get to the loo without a walker/zimmer frame but at least he's not incontinent now - yay! Fingers crossed all goes well with the heart consultant tomorrow.....

Hospital

I watched a great documentary on Wednesday, called "Hospital" and this week, episode 5, featured a 98-year-old who had a TAVI (transcatheter aortic valve implantation) This guy was the oldest to have the procedure... he had a stroke during the op but recovered.
The TAVI is exactly what's recommended for my 89-year-old dad, Eric.

http://www.bbc.co.uk/iplayer/episode/b08dxcgd/hospital-episode-5

Dad has an appointment booked on Monday at the QE Hospital in Birmingham to discuss this TAVI procedure. I hope that he is fit enough to go through with it. He has lost over 2 stones (around 30 pounds) and now weighs 8 stones 10 lbs. Mom is encouraging him to eat high-carb/fat food to put the weight back on.

I visited my mom and dad on Monday and Thursday this week and thought that's Dad's dementia seemed very much worse... it was quite shocking really. Just a few weeks ago he was frail but able to wash, shower and pop to the shops to get a newspaper. Now he is housebound and can only walk with a frame.  He stopped his "pompey pom" tuneless singing and replaced it with nothing. Absolutely zilch. Silence.

Quando Quando Quando

Quando Quando Quando - when when when?

To be honest, the last 7 days have been hell on earth for my mom and dad but I don't want this blog to always be so depressing.  Over 3 million people have seen the lovely video of Teddy Mac, a dementia sufferer, singing Quando Quando Quando and let it continue to bring a smile to our faces 😄

I drove my dad home from hospital on Monday.  He was still recovering from pneumonia and nowhere near ready to leave but the hospital needed the bed I suppose. On Thursday he developed an all-over-body rash. The GP came and said it was an allergy and prescribed more medication to add to the mountain of pills. Dad has also become incontinent and my mom is utterly exhausted with all the changing of underwear, sheets, etc.  She's nearly 82 years old and is on the verge of a breakdown 😢 I would DEARLY love to give up work and care for both of my parents but I can't afford not to work.  I'm juggling 4 jobs and feel so guilty all the time that I'm not there 24/7. Oh, what to do....?

Today, my mom rang 111 (the NHS emergency and urgency services number) to say she couldn't cope with Dad and a senior nurse said that she would contact Social Services.  Let's see what happens. Dad has worsening dementia, is thin, weak and skeletal and in desperate need of this new heart valve.... WHEN WHEN WHEN?

https://youtu.be/9UQ5mjFzHTA

Ps. I have a stinking cold and am unable able to visit this weekend for fear of spreading germs.  My brother and his wife have the 'flu so Mom and Dad are very much on their own. Hoping they can hang in there!

Apple Trees

My husband Trevor and I visited Dad in hospital today. Dad is recovering from pneumonia and doing remarkably well but his dementia will not improve.  Occasionally it will hide behind a mask of lucidity and he is so normal I want to cry with thankfulness. However today was a mixture of understanding and confusion. He looked weak, thin and vulnerable.  He is not the strong father I remember from years ago. Not the father who used to repair the roof, rewire the house, build furniture, tend to the garden, take me fishing in the summer and sledging in the winter snow. Not the father who taught me mathematics, helped with history projects and proof-read English essays. He is not the father who took me elderberry picking to make home-made wine or helped me climb our apple tree. Beautiful memories! These times are long gone and my father is now just a shell of the man he once was. In my mind though he will always be my hero and I love him x