Time has passed

Well, time has passed since Dad died. We're slowly coming to terms with it.

Sorting through Mum and Dad's things in the house has been tough, but we're getting there. The house needs a bit of work and then we'll put it on the market in the spring.

Mum has no concept of what is happening, but is thankfully in her own happy world. When I saw her last week, she looked healthier than she has in a long time. Donnie is convinced she's taken up golf or something similar, she looks so healthy.

Mentally, she has deteriorated though. It seems cruel that as her physical health seems to improve, her mental health declines. Who knows what the future holds for her, but if she stays happy enough and is well cared for, it's a relief.

Dad has passed away

Sadly Dad died last night about 9pm.
He slipped peacefully away at the Hospice without pain or distress . He most likely went to sleep and didn't wake up.
We are making funeral arrangements now - there will be a private cremation in the next day or so. This will be followed by a Thanksgiving Service on Friday 19th September at Elie Church and we will scatter his ashes at Chapel Green in Elie afterward.

Please send us kind thoughts and best wishes at this difficult time.

Dad is going back to the hospice.

Hi all
Sadly Dad s time at home has come to an end. He spent 5 days in St Gemma s Hospice in Leeds last week and I took him home on Saturday.
He has had lots of palliative care support this week but now realises nice as it was to get home for a bit but he needs to come back for good and is going into the hospice in the morning.
The hospice is a lovely bright sunny place full of lovely friendly and highly professional people who made Dad unbelievably comfortable and controlled his symptoms.It also has the most fabulous award winning in full bloom garden which he has a balcony to sit on to view.
We all got together on Saturday/ Sunday and had a happy family time and sorted out some important stuff which was very important to him and he said goodbye to Mum.
Graham is bringing him down in the morning.
It is a terribly sad time but St Gemma is a lovely place where he is safe and comfortable and wants to be and we are all glad he near one of us rather than on his own in Fife.

The exit plan

Dad is staying in Leeds until this weekend. Susie will then take him home to Crail. That visit will be to wrap up his affairs and say goodbyes, including to Mum.He'll then head back to Leeds to spend his final days in a Hospice there. He's going to have a look round one tomorrow.

He's got grand plans of wanting to come to Inverness and do more visiting, but it is very unlikely that he'll manage the journey.

He's very weak now and is struggling even to take in fluids, let alone solid food. He's also in lots of pain, but some pain relief is being administered through skin patches and this helps. Talking is becoming difficult and painful for him.

His final wishes are for a Church service in Elie, followed by a cremation.

It won't be long now.

Dad is going downhill pretty quickly. He's unable to swallow now - so much for us thinking the tumour wasn't growing into his throat!
Susie is in contact with Palliative Care Services in both Leeds and St Andrews to see if there is help they can give him. He'll probably be in Leeds for at least another week and then he's planning to return to Fife. He'll probably be in a hospice when/if he gets back to Fife.
Certainly I think his days of living alone in Crail are over.
It's a sad time.

Dad is at Susie and John's house

Susie went to visit Dad last weekend and found him in a poorly state. She has taken him back down to Leeds with her to help him for a while.
He keeps claiming that 'he's fine' but in reality, he's struggling. The tumour must be growing as he's finding it hard to swallow and is breathing in most of his food. He's getting weaker and weaker.

When he returns to Fife, he'll probably be using a Hospice. Perhaps not full time, but certainly as a day visitor. Susie is talking to the Macmillan nurses to arrange it this week.
He's also been talking about wanting to move into supported accomodation. Not sure if that will happen given the timescales we're working with, but it's worth a try!

Mum is still soldiering on, although declining quickly. We've got the bill for her care in today, so trying to find a way to pay for it. I'm so glad she's being well looked after where she is.

She'd welcome a visit, even if she tires quickly.

Send a hug.
X

Waiting.....

Dad has been getting more and more tired. The tumour is no doubt growing aggressively and not in the direction of his voice box or windpipe, but it is growing somewhere.

He's been feeling particularly unwell the last 10 days with a mouth and throat infection. So he's been back at the Doctors for some antibiotics and the pills are making him feel pretty rough too. His throat's been very sore and so he's been trying not to speak to aggravate it.

Susie is going to Crail this weekend to see how he is. Graham was there last weekend and I was there the weekend before. I feel we're witnessing Dad's decline in weekend installments.
Dad may go back to Leeds with Susie for a while for a bit of looking after.

Mum has also been going downhill rapidly.Her last review meeting showed that the progression of her illness is rapid and (now) well documented. Fortunately, the Care Home is still able to meet her needs.
There's been a bit of trouble there though because Mum's watch and engagement ring have gone missing at the Care Home. The Police have been involved and are investigating further, but it is unlikely that either the watch or ring will turn up.

Dad is pretty upset about this. But he keeps up the visits to Mum every other day, while he can.

Keep sending kind thoughts. Dad appreciates kindnesses and support. He may not be up to speaking or visiting, but he's happy to know he's not forgotten.

Mum's birthday

It was Mum's birthday this weekend. She was very excited about the cake and candles! We gathered together - Graham, Susie, Millie, John, Charlie Orla and Roxanne and celebrated it with her. Mum was pretty confused, but seemed to enjoy having us around.Everyone was trying their best to be cheerful and upbeat but the occassion was tinged with sadness. Probably the last time we'll all be together.

Dad found the whole thing very hard. Mum's confusion in the days before her birthday, was tough to take for him.Roxanne has been visiting all week and staying with Dad. This has been a great comfort. As well as getting all the pots planted up in the garden, Roxy has been a superstar in keeping his spirits up and being there for the difficult visits to Mum's care home.

Keep thinking of us all!

Car dramas

Well they say it never rains, then it pours....

Last week Dad's car died and this sent him into a spin. The end of the world as he knew it!
However, over the weekend we've got him a new (old) car - well done Graham for doing the leg work! Dad's outlook is brighter now he's got wheels again. And can get into the village to get his paper. He's even talking of getting out and about to visit people.This is a sign that he's feeling a bit more upbeat.

We're doing various form filling and paperwork things to make sure they are getting as many benefits and breaks as possible.
The Trading Standards Money advice team have been fantastic and pointing us in the right direction. They have managed to get Fife Council to agree to pay full care costs for Mum for a couple of months - this is good news. Thereafter, we will have to contribute £100 per week to the total care costs of almost £600 per week. We're working away on that one.

The important thing is Dad is not getting stressed with this side of things and can spend his last few months(?) just enjoying a good quality of life.

This week, he's got another appointment at Ninewells to see how he's getting on. Then I suspect he'll hit the road and do some friend visiting while he's still able.

Mum is doing fine in St Andrews and had a lovely time making a photo collage last week (thanks Jackie!). I hope to see her as soon as I can get down there.

Send a hug
X

Waiting now...

Dad is now back at home and pretending all is well.
He's getting lots of visitors and so is in 'hostess with the mostest' mode. The days and sunny and he's getting out into the garden. He's seems pretty happy and relaxed.

The tumour in his throat will be growing. His voice seems to be getting weaker every time we speak. Who knows how long he has? But if the sun keeps shining and the plants keep growing, he'll enjoy what time he has left.

Mum is getting more relaxed and more settled at St Andrews House. She is still packing and unpacking her things - which is one of the rituals she does. But as long as she has enough sweeties and regular mealtimes, she seems happy. Dad has been visiting her regularly. And he's upset and relieved that she has stopped asking him to take her home.

We're working hard to try and find a way to fund the care home for Mum. Their financial affairs are in a bit of a mess so we're trying to sort it out, without putting Dad under any strain.

I don't know if Dad has weeks or a few months left, but keep your fingers crossed he gets a chance to enjoy them.

I guess we'll just wait.....

Dad's heading home

Dad will be discharged on the 24 or 25 April and will head home.
He's made the (brave) decision to not have any more surgery on his tumours and let the cancer run its course. No one is sure how long he has left. The throat tumour has grown in size since it was last looked at a few weeks ago, so it may not be long.

We went to visit Mum together last weekend and he found that really hard as he is now seeing just how ill she is. He also found it hard that she cannot understand that he's dying and she cannot show compassion or empathy.

He's had to deal head on with lots of stuff this weekend - Mum's deterioration, his own illness and the mess that their finances are in. It's been really tough.

But it's all out there now and we can start working with it and coming to terms with it in our own ways.

If you get a chance to visit, Dad would love it. But please, make it soon.....

A sad weekend

This weekend, Mum went into fulltime care at St Andrew's House. She is not taking in that it is for good and thinks that Dad is going for a break into hospital. She has been told it's for a long time, but I've not doubt she's have her stuff packed and unpacked at least twice a day for as long as her mind allows her to.
She has no grasp of the reality of how serious it is for Dad and has no emotional response to the news that he is terminally ill. Fronto temporal dementia is a cruel illness.

Packing up her things for her to take with her, was very sad. Going through her personal things, picking what I thought she would like to take was particularly heartbreaking. Especially finding all the special things she'd hidden in her sock drawer. Small things that were significant to her, but meaningless to many other people - old photos, dance shoes, her stamp collection (did she collect stamps??), touching letters from us when we were children, old penny collection and war memorabilia from her Dad.

She is settling back into St Andrew's House well. When asked how she's finding it, her answer is 'awful' - her stock response to any question on how things are! It's one of the limited number of words she has left.
But she is relaxed and is clearly fond of the staff (maybe not the other residents!) and is responding well to the routine and support she receives there.
Importantly, she is safe and well looked after by good team of people who can manage the job. It's a relief that she is there.

Dad's immediate response to this new situation is relief, but he's got a grieving process to go through and I'm not sure he's had the space to do this yet. His stay in Ninewells begins on Tuesday 8 April and Graham will take him up there on Tuesday morning. Before then he has many affairs to get into order and will probably be too busy to notice that Mum's not there.

He is getting another endoscopy to see how far the throat tumour has progressed on the 22 April. Once the results are back from that, he will make a decision to either proceed with surgery to remove the tumour or allow the cancer to take its course. He will probably be in hospital for a few weeks and then who knows......

Mum's going into care

Well the latest news is that Mum is going into care full time from 31 March in St Andrews. Dad is going to have some more endoscopy on 22 April, but will need to be in hospital for 2 weeks beforehand for 'body building'.
Depending on what they see when they operate, they may operate further to remove his voice box. He'll have an artificial voice box and breathing tube after that. The operation is pretty serious and he may not survive it or the recovery period, but we can only hope....

Please say prayers for them. And light any candles......

x

Dad is not very well. A new tumour has been found deep in the back of his throat, in his pharynx and going into his voice box (his larynx). This week he has been at Susie and Johnnie's house in Leeds getting spoiled rotten. He was in desperate need of a rest and a chance to get his head round what may happen next.

Options are:

• get treatment for the cancer, which may involve getting a tracheotomy tube and artifical voice box. It will be gruelling, painful and unpleasant and possibly fatal
• Or get no treatment and let the cnacer take its course. This will be gruelling, painful and unpleasant and ultimately fatal.

He's got to choose one of these options on Tuesday and I don't envy the decision.

Mum meanwhile is in St Andrews care home and seems to be settling well. She doesn't understand what is happening to Dad and thinks he is away on holiday.

They are getting means tested next week. This may help to find a way to fund full time care for Mum.

It's all really sad and depressing.