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Frightened.....

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User
Posted 27 Feb 2016 at 23:24

It's been a while...sorry.

As normal with me, I only find myself writing on here when I feel like I'm a little lost ( I feel very lost )

Without going over old grounds, Dad was diagnosed with advanced Prostate cancer in 2010.  He's been on several drugs trials, had radiotherapy, chemo etc - we've been on a constant roller-coster ride but now I feel we are on a decline.

Dad started Radium123 6 months ago to try & control the bone mets as the reading (not sure on the medical name) was very very high so the Onco's wanted to try & reduce this count. The radium was successful and the count which was 3000 has now reduced to what is average for someone with with Dads staging.  But his PSA is now at over 2700 and the cancer has spread to his arm and further spreading to his Pelvis.

Dads mobility had been greatly reduced, he needs crutches to get out of his specialist chair or his bed, he is extremely slow and weary. 

After his monthly hospital visit last week he has been told he is too weak to have further drugs to try & control the cancer or too weak to have further chemo. His pain meds have been increased to the max although Dad is still in pain, his Pelvis is causing enormous discomfort and he's had to have a scan to see if his Pelvis has a fracture (waiting on results), he's been told he cannot drive now, a stair lift is needed and also a wheel chair has been given if Dad wants to go outside. The Pallative nurse has also recommended some day visits to the local hospice, is this to give Mum a break, or just for Dad to have a break or is this something that is suggested when nothing further can be done?

I feel this is the worst my Dad has been, although he has had several 'bad' episodes but always seems to bounce back, I don't feel we're in a bounce back situation and I am frightened for what is next.  I tried to speak to my Mum, who is trying to remain positive and is concentrating on trying to help make Dad stronger for further drugs/chemo, talk of frozen spinach & Nutribullet earlier today- much to my poor Dads disgust.  But I can't see how this is possible, he seems so weak (mobility wise), can he get stronger? 

This is the first time he's been sent away being told he's too weak & he has his next appointment at Guys in 4 weeks.

I know, no one can give me the answers, but in 4 weeks without any drugs controlling the cancer surely it will spread.  Are we in the 'next ' chapter.. 

Any help on what might be next? Can things get better or have we reached the next stage?

 

Just putting it all out there...sorry

But thanks.

 

Also, just want to add My Dad is amazing, 6 years & he never moans, never says why me, just gets on with it & his positivity is normally so positive....but not today, today he looked tired from it all :( he's still amazing to me, my best friend & the loveliest Daddy a gal could ask for., I've very proud & ever so lucky to have a man as wonderful as he is as my Dad, and Grandfather to my children. x 

User
Posted 03 Aug 2016 at 00:13

Hello All,

Well it's been 2 months, 2 days without Dad - and something has brought me back to the Community that helped me so much :) 

It saddens me to read new posts of Prostate/Advanced Cancer sufferers but at the same time I now have 5 year 6 months under my belt of knowing how truly amazing the help out there is.

My Dad was someone at the worst stages & who fought bravely for so long with so much help - and so much love around him, he never moaned he strived every day for seeing the next year, month, week and day.

It wasn't an easy journey but weirdly it was still a happy one (mostly), sure their were many struggles - but even now Mum & I say Dad didn't struggle until the very end.  

One Tuesday, there I was sitting talking to him normally like I did every tuesday (my day off of work) he was sat in his chair in the Living Room, with Debbie the lovely Hospice nurse there to checking in on him, but she was saying Dad seemed frailer (walking was difficult for him and ever so slow) but he still did it with the aid of crutches - Dad held my Hand that day (after having my 2 year old on his lap for cuddles) and said 'have I done okay babe?' tears filled our eyes and I said wow Dad your amazing, I think I knew then what was coming, Dad was letting me know for the first time, he was tired and ready to go - such an emotional day - That night my Mum, Sister and I drove from London to Essex to tell my Brother in person it wouldn't be long. Debbie advised us we had only weeks now - this came as a shock!

The next Day Dad couldn't get our of bed, various things were put in place, hospital beds, a care team, myself and my siblings were there every day for the following week but then the following Tuesday my beautiful Daddy took his last breath. All our hearts were broken and still are.

What I have I learnt? My Dad was determined to live as long as possible - mind over matter (stage 4, spread everywhere and he made it 5 years 7 months later with  PSA of over 3000) Never moaned.  

I never thought I could cope without him, I'm not sure I am coping - sometimes I'm happy, sometimes I cry - but mostly I am ok, I haven't broken down as I thought I would. Mum is Mum (amazing women she is), always staying tough (I'll do alright with Mum & Dads resilience), she's lonely in their big house with just her and the dog but she's managing (I suppose you just do). I think we've all been suffocating her in our overly caring way but she likes it :)

Our World seems so crazy to me at the moment, but when you go back to basics, love and the love we have had, & still have to come will guide us all through.  My Dad had over 80 people at his funeral, for the first time ever I stood and read a tribute and a poem as did my siblings, we celebrated my Dads life & I know we made him proud.

It's not an easy journey, I still wish my Dad was here, I still long for him, I still have a little cry,  but I know myself and my family will be okay - after all he made us what we are - so we have to keep going :) 

I wish all those just starting on this path a long one and those still on it an happy and pain free one and those that do the 24 care like my beautiful Mum - well you are truly amazing.

and once again I Thank everyone on this Community for taking the time each day to log in and read posts of those that need support, you are all totally amazing.... 

Cat xx

 

User
Posted 26 May 2016 at 22:52

Me again.

So today I worked from him but at my Mum & Dads house so I could keep an eye on Dad while Mum popped out to run some errands.

I wasn't prepared for having to cope with other peoples emotions though, nothing could have prepared me for that. Today my Dads cousin came and her husband, my Dad and her are very close they are like Sister and Brother as the grew up together - she totally broke down, several times. Then 2 of my parents closest friends came, one my Dad went to primary school with, they too both fell to pieces - their daughter who is my age also came - she burst out crying as soon as I opened the front door. Then my Aunt from Australia called and i had to have her on loud speaker and hold the phone for my Dad whilst she said her goodbyes.

All these emotions and tears, people grieving for someone who is still here but sadly also not so with it today. No one got upset in front of Dad but I wasn't prepared for the love people have for him to just keep pouring out. Mum and I had to try to be strong for them all, it was bloody hard...

Dad, didn't really know what was going on, he slept all day, didn't want to eat, and was a bit of a Grump. He told me to go away twice (I don't mind) I know he doesn't mean it - he is very spaced out now.

Mum needs help now as Dad won't let her change his clothes and he's too big for her to manage by herself.

My Brother is coming Fri- Sun to help with Dad & hopefully give Mum a chance to sleep as she's not sleeping.

At Christmas my Dad came shopping with me as he wanted to buy my Mum a Pandora bracelet, it was hard for him back then on his crutches - only to be told what he wanted was sold out. He had always planned to take Mum shopping to get this special bracelet and charm he had chosen, but they never got to the shops together. So today I went out and got what he had chosen and my Sister and I took it up to Dad & tried to explain we had got the bracelet for him to give to Mum. I hope we did the right thing, Mum got very upset. My Dad wanted Mum to have it so much and we wanted to make this little wish true for him and her. A perfect solid gold heart on a lovely chain. Something hopefully that in the next months with give comfort when she wears it.

I'm going to my parent house again tomorrow, to help Mum - so not sure what to expect. More visitors and hopefully not a stroppy pants Daddy :)

x

User
Posted 04 Mar 2016 at 20:24

Thank you all so much for taking the time to reply to my post, it's very much appreciated & I value your support and guidance.

A doctor from the Hospice came to visit Dad this week, he has since reviewed all of Dads scans, test results etc and has made an appointment for Dad to go to Guys in 2 weeks, (can't go next week due to strike action) for hopefully some more Radiotherapy on the newly spread cancer which is the cause of Dads discomfort, apparently it is quite severe - (also no fractures in the pelvis so thats's good)

Dad is still confined to his bed but tomorrow the stair lift is being fitted and the doctor is very keen for Dad to be able to get back downstairs once the pain is under control. The Occupational Therapist came to and today a commode, bed rail, hospital chair and table, new loo seats arrived to make life easier for Dad.

In my previous post I mentioned the Nutri Bullet & spinach, Mum isn't being mean she makes Dad anything he wants to eat (especially her home baked yummy treats - he's spoilt for choice ), but this was her way of trying to make some tasty nutritious smoothies for Dad as well :) as he's not eating very much when he does eat.

I honestly believe that Mum isn't 100% sure on what they were told at the last appointment, she does seem to think that if Dad can get stronger he could possibly then be given further treatment - maybe she has totally misunderstood, but even the new doctor seemed to make Mum think there is a chance for Dad to get stoner if he can have radiotherapy.

I saw Dad today & he was confused and said odd things, but he was smiling.

So until his appointment in 2 weeks (falls on his 69 Birthday to) I won't have any further updates.

Thank you all for your kindness,and offers of cuddles to my Dad :)
I showed my best friend your responses & she was shocked at the love & support (in her words) strangers give each other - and she said how lovely it is that there is a forum like this where we can all just be and write freely to help one another.

I'm not sure if I'm kidding myself but I do feel there is a chance he could improve - or am I in denial ? No one can know for sure so for now the journey continues, and each day I get to kiss his beautiful face, is the best gift I could receive.

Cat x

Edited by member 04 Mar 2016 at 20:26  | Reason: Not specified

User
Posted 03 Aug 2016 at 22:45
Oh Wow Cat,

I haven't looked in for a few days but I am so glad I did to read your lovely post, it has truly touched me. I like so many will understand your need to come back and revisit old friends where you have felt such empathy . I honestly think this is a safety net full of people that understand. We are all still here for you.

X

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 28 Feb 2016 at 00:29

Hi Cat,
yes it sounds like dad has moved to the next stage and i am very sad that you haven't understood that from what the doctors said at the appointment. When they say that there is to be no further treatment, they don't mean there is no further treatment until he gets a bit better and then treatment might start again.

The most important thing now is to get dad's pain under control. Generally speaking, the hospice staff are much better at this than hospital teams as the hospice staff are dealing with it all the time. Through his visits to the day centre, he and your mum both get a break but it also gives them an opportunity to check that his meds are keeping him comfortable. There is no reason in this day and age for him to be in great pain - the problem is that the higher the pain relief the more 'spaced out' or sleepy the patient becomes so the palliative care specialists will try to finds a good balance for him.

Has dad ever spoken about what he would like to happen at the end? Would he prefer to die at home or in a hospice? It may be that your parents both understood at the appointment what was being said but were trying to protect you by not going into detail. Or maybe they don't really want to know in which case it would be cruel to force them to acknowledge it. However, it is important to keep an eye on your mum as she must be feeling very frightened too.

I am not sure that it is kind to try to make him eat things he doesn't like right now. If he is in pain then his appetite will be very small anyway and as time goes on, he may stop eating completely. I tended to give my mum anything she fancied, sometimes that was just soup or hot chocolate or ice cream but I didn't care as long as she would eat something.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Feb 2016 at 06:23

hi cat
brought tears to my eyes did your post. we can all tell how much dad means to you, but it seems its at a time when all you can do is make him as comfortable as possible, as lynn says let dad have what he fancies, the hospice will be good for everyone to have a bit of a break
don't forget to look after mum to

regards
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 28 Feb 2016 at 08:40

Hi cat

So sad to read your lovely post and nothing to add to what Lyn and Nidge have said. You are obviously all going through the mill but try to get rest in between each crisis, stay strong for your dad and your mum and yourself.

My thoughts are with you and your family

Best wishes Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 28 Feb 2016 at 09:12

I agree with all that's been said above, and would just add that I'm sure your parents appreciate your support, and know how lucky they are to have a daughter who's so caring and concerned.

User
Posted 28 Feb 2016 at 09:34

Good morning cat.
Just to say I'm thinking of you.

Foodwise I agree with the others. My mother had "fancies", one minute a bacon sandwich, the next a chocolate mousse.

By the time it was prepared though she had gone off the idea and didn't fancy it so it's really a question of balance and just trying to do the best you and your mum can do without stressing that, if fancies a particular item the ingredients aren't there.
You'll both know what his favourite things are be that chocolate,baked beans or whatever and just try and have a little of something on standby. If he eats it then it can be replenished.
Drinks like Ensure are beneficial,having all the nutrients in without the stodge etc. They come in different flavours and should be supplied by the GP. If he gives you a prescription ask the pharmacy for a range of flavours because you'll need to find out which is his favourite. John loved the chocolate ones that had been prescribed for me !

At this stage quality of life is much better for him than getting him to eat things he really does't want to try, which he might force himself to do if he thinks that your mum, for instance will be happier if he eats it.

The hospice would be good for both mum and dad. Calm, peaceful places (where you can still have a good belly laugh - they aren't all doom and gloom).

It's a safe haven for both of your parents. A change from the same daily view. Not only will his pain meds be under proper control but once they are he may well find that his interest in other things is stimulated.

Mum gets to meet new people in a similar situation so won't feel so isolated and she will have experts on hand to answer her queries and give advice.

I do hope that things improve for all of you and I wish you all the best

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 28 Feb 2016 at 10:00

Hi

I agree with all that has been said. I am in a similar situation with my husband and I think sometimes they 'drip feed' information as not everyone wants to be told bluntly that there is nothing else to be done. Or it may be that your parents did understand and didn't want to tell you? My parents were very evasive when my mum was diagnosed with Alzheimer's - we worked it out for ourselves but didn't discuss it because this was their choice. But there is no reason for him to be in pain. Hospices are brilliant at re-jigging the medication to make someone comfortable and providing support to the carers.

My husband would throw pureed spinach at me if I gave it to him! Let him have whatever he enjoys and just make the most of your time together.

Big hugs

Rosy

User
Posted 28 Feb 2016 at 11:40

I forgot to say that if mum and dad haven't already done so, it is a good idea to talk to the hospice nurse or hospice social worker about benefits. Your parents may be entitled to some financial support from the government if the doctors feel that he is now terminally ill.

A lot of hospice day centres offer alternative therapies such as massage and reiki which might help dad as well.

Edited by member 28 Feb 2016 at 11:42  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Feb 2016 at 12:18

Hi Cat,

Agree with others that it would appear that your Dad has reached that stage with advanced cancer when there are no drugs left and the focus moves to comfort, pain relief and making the time left as good as can be. I am on this journey but still have some drugs to go but acceptance when you reach this stage is crucial and I hope your parents can understand it. This will allow time for family to simply be there and spend those precious last months building wonderful memories. There is a lot of support needed not just for your Dad but for your Mum who will be frightened about what is happening. It's a difficult time ahead but no reason why it cannot also be a time for doing your favourite things, eating some favourite foods and generally live the time as positively as you can. Good luck at this time, we are all here if you need any support.

User
Posted 28 Feb 2016 at 14:56

... and creating lots of happy memories that you and your children will be able to look back on and smile about in the future :-)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Feb 2016 at 21:27
Hi Cat

I'd say it's lovely to see you back here, but obviously, given the circumstances that's not what I mean. It is lovely to see your name though and to know that your dada has done so well, for so long. You are a lovely daughter and we know you adore your lovely dad. I agreed with everything that's been said here and think that it's time to get that pain under control and start to enjoy life as much as possible, laugh, eat nice stuff (if dad can) and just be together. Don't be sad, your dad and mum will be trying to be upbeat as much as they can, but it's got to be horrible to face this. I think maybe your mum thinks she can give dad vitamins to help him get better, but that's very unlikely now.

The Hospice is such a gentle place, kind people, not rushed off their feet and everyone in the same boat, he would benefit from contact with them.

I know this is very tough Cat, stay strong and give your dad a cuddle from me.

Lots of love

Allison xxx

User
Posted 04 Mar 2016 at 20:53

" I showed my best friend your responses & she was shocked at the love & support (in her words) strangers give each other - and she said how lovely it is that there is a forum like this where we can all just be and write freely to help one another."


Cat, I'm glad that comes across, because it's what we do best. As we can't literally hold your hand we can at least listen and offer the virtual blanket.

Are you in denial - maybe. None of us can predict what will happen and when for your dad. What we do know, because it is so obvious, is that you love him to bits and want the best for him and your mum.

Carry on loving and supporting them both. It's all you can do

We can't control the winds - but we can adjust our sails
User
Posted 04 Mar 2016 at 21:11

Hi Cat so glad you are getting something from this site that helps you. I feel so fortunate to be able to read your words of caring and love for your dad it is beautiful to just see the sort of lovely person that you are

All the people here have an understanding of what each and everyone of us is going through as we have all been on this rocky road, some of it is rockier than other bits and I for one have had to witness similar when my mother was going through her nightmare of lung cancer from which she passed away from a long time ago. It is so hard watching someone you love suffering, all I could do was to take the little bits of conversation and small actions and put them in my memory for me to have forever and I dip into it often, it is comforting.

Stay strong and be positive make some more memories while you can Cat.

I feel that there are lots of people on here that wish you kind thoughts and to give you a virtual hug.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 23 May 2016 at 21:52

Just to say, stay strong and take care of yourself too. I feel in a similar situation. My own dad seems to be deteriorating very suddenly too and I'm not really sure what is happening. He is having a lot of pain and the stronger painkillers just make him sick. His appetite is very poor and he is having difficulty moving around. Next appointment with the consultant is still a few weeks away. Sometimes it feels like everything is about to end and then a little while later things feel a little more normal again. I'm trying to make the most of those times and relax so that I can have the strength to cope. Take care x

User
Posted 23 May 2016 at 22:10

Hi cat what a terrible time it is now for you all you are so strong describing what is happening and all I can do is cry, I feel your situation and can do nothing about it.

Try to take positive memories from the time that you have with your dad stay strong for your mum and make your dad as happy as you can with the time that you have left.

I am thinking of you all, regards Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 23 May 2016 at 22:24

I'm so so sorry cat. Even knowing like you did, that this was on the cards, it doesn't make it any easier.

Your dad is tired now and wants peace. He would also want to know, and I am very sure that he does, that you all love him and want what's best for him.

There really isn't anything much that any of us can say to make this easier for you and your family.. You will continue to support your mum, and each other, sharing all the good memories.

It will be almost impossible for any of you but, if you can, then save your tears for when you are with each other while you're with him. The time left is so precious that he'll need the comfort of the familiar faces round him, with the familiar smiles and love for him shining through.

I am thinking of you all. I have been in this situation so many times in the past years that I really do understand how you feel.

Love and best wishes to you all

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 23 May 2016 at 22:30
Oh Cat

My heart goes out to you all, I know what you mean about writing it down making sense of it somehow. This time in your lives can only be endured, concentrate on making him comfortable and talking about nice times when he feels able or if you are keeping him company while he rests. You are a very loving daughter and I know you'll support your mum through this and afterwards. We are thinking of you Cat.

Lots of love

Devonmaid xxxx

User
Posted 23 May 2016 at 22:30

Dear Cat,
Very hard times for you and your family. Your family sound very loving, love and care is very special at such times.
Try talking about special times you had together around your dad, it may help you all and him too.
My thoughts are with you.

Leila X

User
Posted 23 May 2016 at 22:57

Thinking of you all. It's so hard for you to watch your dad like this. 

Big hugs

Rosy

User
Posted 23 May 2016 at 23:07

The answer is in your writing - dad has had enough now and is preparing to let go. As hard as it is to face these coming days and weeks, there will be a time in the future when knowing that - knowing that this was no life, that his situation had wearied him beyond imagining and he had in the end still retained some control over this horrid disease - will give you some comfort and strength.

Things to ask? What support is available if he (and your mum) wish him to die at home? Is there a night sitter service? If you didn't get round to applying for the disability/terminal illness benefits & disabled parking badge, now is the time - the nurse can probably point you in the right direction. And is there a local day care centre that dad could possibly visit - many find great comfort in the alternative therapies and other services offered. There may also be counselling, aromatherapy etc for you and mum?

Don't forget to look after yourself while you look after everyone else.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 May 2016 at 00:58

Thank you all so much for your kind words and guidance. 

The Hospice nurse who looks after Dad, was lovely - wow these ladies & gentleman really are something special, she showed such kindness to us all today - which is such a great support.  She was patient and professional and I could tell my Dad was happy with her and has known her for a while now so that's also nice - she talked about visiting her son in Australia which made me reminisce with Dad about our trip to Oz when I was 18, I tagged along to my parents 25th wedding anniversary present to each other which was a trip to OZ :)

So.

The hospital bed needs to go downstairs as this will be better for Mum, so Dad isn't stuck upstairs.  Debbie (the nurse) said Dad is very very poorly now and even the short walk on his crutches to the downstairs loo is way to much for him (he can barley do it), she explained to Dad that he is very very sick and that there isn't much point doing another blood transfusion as it won't really help him now as she thinks he is too weak to even leave the house to have it and doesn't want added pressure on him.

She talked about staff coming to help Mum, and night sitters (for when they are needed), she asked Dad how he finds showering and he was honest and said it's too much for him, although he just sits in it (it has chair) and mum does all the washing - so I think this is going to stop and washing from the bed will happen.

Medication and pain relief got sorted, as apparently Dad will need it injected eventually.  She asked my darling Dad about resuscitation - to which he said he didn't want that.

I said we don't want a 'time' but, always a but eh? My Siblings and I are thinking we still have many months, are we right to think this and she said no, seeing your Dad today he is very poorly and you may only have weeks now. (this was not in the same room as my Dad as she thought it best to let him rest). Tough to hear.  She said Dad is very vague and off in the distance somewhere (sometimes, not all the time), but he's not really sure of what is going on around him.  He knows who we all are, and still cracks the odd joke but today he tried to stand up because he said 'the bloke in the room told him to go and move his car' it was only me in the room. 

Dad cried today a few small tears, I think it's the first time i've seen him cry apart from at his Dads funeral when I was 18 (I'm 39 now) at our weddings. He held my hand and asked us 'if he's done okay' and he's sorry it's all happening so soon. Wow done okay!!, he is simply the bravest person I've ever known 6 years of stage 4 advance prostate cancer, so many treatments, and operations, metal rods, spinal cord compression, ulcers - he's dealt with it all and never moaned. 

We shared the news with my Sister and Brother and have all been together today.

I love him so so much - words cannot ever emphasize my love for him, and how wonderful he has made our lives, but I'm actually ready to let  him be at peace now and I don't want him to suffer anymore.

Hard to say that as of course I also want every second I can will him - thank goodness I live 5mins away, I go daily and annoy him (we laugh about this, as I am forever turning up at their house, morning, noon or night) he likes really he says he misses my voice as it's so bloody quiet once i've gone.  

I'm really sorry for my long essay....

The journey isn't quite over yet, but every minute and second you have to be with the ones you love is truly the greatest gift we have... treasure life, love, family and friendship and we will all always be okay.. x

User
Posted 25 May 2016 at 07:26
I think that you and your family are wonderful. Your Dad is very lucky to have so many caring folk around him. I feel for you too and really hope you can enjoy as much time with him as possible.

Take good care of yourselves ,

Best wishes ,

John

User
Posted 25 May 2016 at 07:41

hey up cat
the story you tell of your dad must have been so difficult, your love for him leaps from the words, mam has a wonderful family to look after her, and don't forget to look after your self over the coming weeks, do not apologise for long essays

regards and hugs
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 25 May 2016 at 08:03
Cat

Dad is blessed to have such a loving family around him. Look after yourselves.

Thanks Chris

User
Posted 25 May 2016 at 08:22

I've shed tears for you this morning cat and believe me ~i don't do that very often.

Strange to say but I'm glad you've reached that stage, where it's better to let go than hang on to hope.. It will make it easier for you.

Again, nothing much anyone here can do for you, except be here, and you know that already.

My best wishes to you all

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 25 May 2016 at 14:25

I felt so sad for you and your family when I read this. It is like a rerun of my husband's last weeks. Spend as much time with him as you can and make sure you all look after each other.

With big hugs

Rosy

User
Posted 25 May 2016 at 15:00

Hi Cat
I'm very new on here but having been reading your story with tears running down my face, Your dad seems such a lovely person and so VERY brave as are you, you should all be so proud of each other,
Take care of yourself
Viv 🙏🏼

The only time you should look back is to see how far you have come
User
Posted 25 May 2016 at 15:57

Hi Cat
I can't say anything more than my thoughts are with you and I admire your love and strength and support for your father and family. Sending love and wishes
Chris

User
Posted 25 May 2016 at 16:07

You made me cry reading this. It sounds as though all of you, including your dad, have accepted that the end is near. In many ways this makes things easier as you are able to say your goodbyes and to say the things that you want to. 

Make sure you get the pain control sorted - hopefully the doctor will have done this but don't hesitate to call your hospice team at any time, night or day, for advice on what he can have. Then just try to make the most of the remaining time you have.

Lots of love

Rosy

User
Posted 25 May 2016 at 16:08

Sadly, I think your instincts are probably right and that it may be days rather than weeks. The human body seems to have an uncanny ability to prepare and then let go once the mind and spirit are peaceful and it does seem from your writing that dad is at peace with his situation.

Whatever happens next, he will still hear your voice long after he stops speaking and he will still feel you touch him lovingly long after he can hug you back. Stay strong

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 May 2016 at 18:42

Oh Cat, I don't know what to say. I pray that your Dad's passing on will be calm and serene for both him and all his loved ones.

David

User
Posted 25 May 2016 at 19:23
Dear Cat,

Your post is that of a loving daughter, my thoughts are with you all at this time. Lyn is right, often the last sense we loose is our hearing.

You will be in my thoughts.

Leila xx

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Posted 25 May 2016 at 21:48

Hi Cat, so sorry that the time is so near for all of you. Your dad will be out,of pain soon and will always be part of your hearts and memories, I have read your postings since February and they have touched me so much as to what a lovely person you are, the way that you have helped and cared for your mum as well,as your dad is remarkable.

You are strong but will have to stay strong cherish every moment that you can take from this.

My thoughts are with you all at this sad time

Chris/Woody

Life seems different upside down, take another viewpoint

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Posted 25 May 2016 at 22:05
I am so sorry to read about where Dad is right now, you are doing all you can, he must be very proud, take care. Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

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Posted 26 May 2016 at 22:27
Cat

You are a brave and wonderful daughter, you will never regret spending this time with your mum and dad, one day you will look back on it and smile (not at the bad bits, but the brain is amazing and will tend to let those go so that only the love remains). It's good you have some "normal" life to balance this out a bit, you can't be sad for too long with tiny people to care for, that's a blessing.

My heart goes out to you and your lovely family.

With love

Allison xxxxx

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Posted 27 May 2016 at 10:37

Hang on in there Cat. You're doing so well.

The bracelet was such a good idea. Funnily enough my husband gave me a pandora bracelet for Christmas - my daughter helped him to buy it online. It is very special to me and on my birthday I bought myself a new charm for it 'from David'. I'm sure it will mean the same to your mum.

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Posted 31 May 2016 at 23:43

This forum has been my help, guidance and friend over the last 5 years. I appreciate every single person who has taken the time to read my posts, guide me, and who has been there for me. So many people have helped me and for that I would like to say a very heart felt Thank you ...

It is however with huge sadness that I share the sad news of my Dads passing. 6 year of fighting the decease that had already spread so far - he truly is our Hero.

Thankfully I stayed with my Mum & Dad last night along with my Brother - Dad became ill in the night and was in some discomfort - we called the nurses out at 3am and they tried to settle Dad, we sat with him all night long. At 5am while Dad was sleeping Mum and I popped into the living room for a cup of tea, I checked Dad at 6am and he was still struggling but was in & out of consciousness while sleeping. Mum and I both must have nodded off and at 7.30 Mum woke me to say Dad had gone.

Such a brave brave Man, even until the end and he waited until we were sleeping before he left us, he didn't want us there when he took his last breath.

My heart is breaking right now, today has been extremely hard but I know at some point the hurting will end and time will heal us. How lucky am I to have had such a wonderful Dad, I have no idea how life goes on without him but I will do my best to make him proud of me while he watches over me.

Love
Daddys Little Princess x

Edited by member 31 May 2016 at 23:44  | Reason: Not specified

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Posted 28 Feb 2016 at 00:29

Hi Cat,
yes it sounds like dad has moved to the next stage and i am very sad that you haven't understood that from what the doctors said at the appointment. When they say that there is to be no further treatment, they don't mean there is no further treatment until he gets a bit better and then treatment might start again.

The most important thing now is to get dad's pain under control. Generally speaking, the hospice staff are much better at this than hospital teams as the hospice staff are dealing with it all the time. Through his visits to the day centre, he and your mum both get a break but it also gives them an opportunity to check that his meds are keeping him comfortable. There is no reason in this day and age for him to be in great pain - the problem is that the higher the pain relief the more 'spaced out' or sleepy the patient becomes so the palliative care specialists will try to finds a good balance for him.

Has dad ever spoken about what he would like to happen at the end? Would he prefer to die at home or in a hospice? It may be that your parents both understood at the appointment what was being said but were trying to protect you by not going into detail. Or maybe they don't really want to know in which case it would be cruel to force them to acknowledge it. However, it is important to keep an eye on your mum as she must be feeling very frightened too.

I am not sure that it is kind to try to make him eat things he doesn't like right now. If he is in pain then his appetite will be very small anyway and as time goes on, he may stop eating completely. I tended to give my mum anything she fancied, sometimes that was just soup or hot chocolate or ice cream but I didn't care as long as she would eat something.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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Posted 28 Feb 2016 at 06:23

hi cat
brought tears to my eyes did your post. we can all tell how much dad means to you, but it seems its at a time when all you can do is make him as comfortable as possible, as lynn says let dad have what he fancies, the hospice will be good for everyone to have a bit of a break
don't forget to look after mum to

regards
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

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Posted 28 Feb 2016 at 08:40

Hi cat

So sad to read your lovely post and nothing to add to what Lyn and Nidge have said. You are obviously all going through the mill but try to get rest in between each crisis, stay strong for your dad and your mum and yourself.

My thoughts are with you and your family

Best wishes Chris/Woody

Life seems different upside down, take another viewpoint

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Posted 28 Feb 2016 at 09:12

I agree with all that's been said above, and would just add that I'm sure your parents appreciate your support, and know how lucky they are to have a daughter who's so caring and concerned.

User
Posted 28 Feb 2016 at 09:34

Good morning cat.
Just to say I'm thinking of you.

Foodwise I agree with the others. My mother had "fancies", one minute a bacon sandwich, the next a chocolate mousse.

By the time it was prepared though she had gone off the idea and didn't fancy it so it's really a question of balance and just trying to do the best you and your mum can do without stressing that, if fancies a particular item the ingredients aren't there.
You'll both know what his favourite things are be that chocolate,baked beans or whatever and just try and have a little of something on standby. If he eats it then it can be replenished.
Drinks like Ensure are beneficial,having all the nutrients in without the stodge etc. They come in different flavours and should be supplied by the GP. If he gives you a prescription ask the pharmacy for a range of flavours because you'll need to find out which is his favourite. John loved the chocolate ones that had been prescribed for me !

At this stage quality of life is much better for him than getting him to eat things he really does't want to try, which he might force himself to do if he thinks that your mum, for instance will be happier if he eats it.

The hospice would be good for both mum and dad. Calm, peaceful places (where you can still have a good belly laugh - they aren't all doom and gloom).

It's a safe haven for both of your parents. A change from the same daily view. Not only will his pain meds be under proper control but once they are he may well find that his interest in other things is stimulated.

Mum gets to meet new people in a similar situation so won't feel so isolated and she will have experts on hand to answer her queries and give advice.

I do hope that things improve for all of you and I wish you all the best

Sandra

We can't control the winds - but we can adjust our sails
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Posted 28 Feb 2016 at 10:00

Hi

I agree with all that has been said. I am in a similar situation with my husband and I think sometimes they 'drip feed' information as not everyone wants to be told bluntly that there is nothing else to be done. Or it may be that your parents did understand and didn't want to tell you? My parents were very evasive when my mum was diagnosed with Alzheimer's - we worked it out for ourselves but didn't discuss it because this was their choice. But there is no reason for him to be in pain. Hospices are brilliant at re-jigging the medication to make someone comfortable and providing support to the carers.

My husband would throw pureed spinach at me if I gave it to him! Let him have whatever he enjoys and just make the most of your time together.

Big hugs

Rosy

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Posted 28 Feb 2016 at 11:40

I forgot to say that if mum and dad haven't already done so, it is a good idea to talk to the hospice nurse or hospice social worker about benefits. Your parents may be entitled to some financial support from the government if the doctors feel that he is now terminally ill.

A lot of hospice day centres offer alternative therapies such as massage and reiki which might help dad as well.

Edited by member 28 Feb 2016 at 11:42  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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Posted 28 Feb 2016 at 12:18

Hi Cat,

Agree with others that it would appear that your Dad has reached that stage with advanced cancer when there are no drugs left and the focus moves to comfort, pain relief and making the time left as good as can be. I am on this journey but still have some drugs to go but acceptance when you reach this stage is crucial and I hope your parents can understand it. This will allow time for family to simply be there and spend those precious last months building wonderful memories. There is a lot of support needed not just for your Dad but for your Mum who will be frightened about what is happening. It's a difficult time ahead but no reason why it cannot also be a time for doing your favourite things, eating some favourite foods and generally live the time as positively as you can. Good luck at this time, we are all here if you need any support.

User
Posted 28 Feb 2016 at 14:56

... and creating lots of happy memories that you and your children will be able to look back on and smile about in the future :-)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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Posted 28 Feb 2016 at 21:27
Hi Cat

I'd say it's lovely to see you back here, but obviously, given the circumstances that's not what I mean. It is lovely to see your name though and to know that your dada has done so well, for so long. You are a lovely daughter and we know you adore your lovely dad. I agreed with everything that's been said here and think that it's time to get that pain under control and start to enjoy life as much as possible, laugh, eat nice stuff (if dad can) and just be together. Don't be sad, your dad and mum will be trying to be upbeat as much as they can, but it's got to be horrible to face this. I think maybe your mum thinks she can give dad vitamins to help him get better, but that's very unlikely now.

The Hospice is such a gentle place, kind people, not rushed off their feet and everyone in the same boat, he would benefit from contact with them.

I know this is very tough Cat, stay strong and give your dad a cuddle from me.

Lots of love

Allison xxx

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Posted 04 Mar 2016 at 20:24

Thank you all so much for taking the time to reply to my post, it's very much appreciated & I value your support and guidance.

A doctor from the Hospice came to visit Dad this week, he has since reviewed all of Dads scans, test results etc and has made an appointment for Dad to go to Guys in 2 weeks, (can't go next week due to strike action) for hopefully some more Radiotherapy on the newly spread cancer which is the cause of Dads discomfort, apparently it is quite severe - (also no fractures in the pelvis so thats's good)

Dad is still confined to his bed but tomorrow the stair lift is being fitted and the doctor is very keen for Dad to be able to get back downstairs once the pain is under control. The Occupational Therapist came to and today a commode, bed rail, hospital chair and table, new loo seats arrived to make life easier for Dad.

In my previous post I mentioned the Nutri Bullet & spinach, Mum isn't being mean she makes Dad anything he wants to eat (especially her home baked yummy treats - he's spoilt for choice ), but this was her way of trying to make some tasty nutritious smoothies for Dad as well :) as he's not eating very much when he does eat.

I honestly believe that Mum isn't 100% sure on what they were told at the last appointment, she does seem to think that if Dad can get stronger he could possibly then be given further treatment - maybe she has totally misunderstood, but even the new doctor seemed to make Mum think there is a chance for Dad to get stoner if he can have radiotherapy.

I saw Dad today & he was confused and said odd things, but he was smiling.

So until his appointment in 2 weeks (falls on his 69 Birthday to) I won't have any further updates.

Thank you all for your kindness,and offers of cuddles to my Dad :)
I showed my best friend your responses & she was shocked at the love & support (in her words) strangers give each other - and she said how lovely it is that there is a forum like this where we can all just be and write freely to help one another.

I'm not sure if I'm kidding myself but I do feel there is a chance he could improve - or am I in denial ? No one can know for sure so for now the journey continues, and each day I get to kiss his beautiful face, is the best gift I could receive.

Cat x

Edited by member 04 Mar 2016 at 20:26  | Reason: Not specified

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Posted 04 Mar 2016 at 20:53

" I showed my best friend your responses & she was shocked at the love & support (in her words) strangers give each other - and she said how lovely it is that there is a forum like this where we can all just be and write freely to help one another."


Cat, I'm glad that comes across, because it's what we do best. As we can't literally hold your hand we can at least listen and offer the virtual blanket.

Are you in denial - maybe. None of us can predict what will happen and when for your dad. What we do know, because it is so obvious, is that you love him to bits and want the best for him and your mum.

Carry on loving and supporting them both. It's all you can do

We can't control the winds - but we can adjust our sails
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Posted 04 Mar 2016 at 21:11

Hi Cat so glad you are getting something from this site that helps you. I feel so fortunate to be able to read your words of caring and love for your dad it is beautiful to just see the sort of lovely person that you are

All the people here have an understanding of what each and everyone of us is going through as we have all been on this rocky road, some of it is rockier than other bits and I for one have had to witness similar when my mother was going through her nightmare of lung cancer from which she passed away from a long time ago. It is so hard watching someone you love suffering, all I could do was to take the little bits of conversation and small actions and put them in my memory for me to have forever and I dip into it often, it is comforting.

Stay strong and be positive make some more memories while you can Cat.

I feel that there are lots of people on here that wish you kind thoughts and to give you a virtual hug.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

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Posted 23 May 2016 at 21:38

So life has become harder for Dad and for us all.

Since my last post Dad has had several blood transfusions, the first 2 seemed to give him some energy but the last one didn't seem to make Dad feel any better.  We've just been told he now needs another one.

Tomorrow I am going to my Parents house to meet the Hospice nurse, as she is coming to discuss my Mums concerns and I want to be there too, for support and to ask the questions I think my Mum wants to ask but is too frightened to.

Over the last month Dad has deteriorated, to us at quite a fast pace

1.He now shakes all the time

2.Due to his blood being so low he has red (almost bruise like) birth marks all over his face and body 

3.He is very frail, just about managing on his crutches at home (he has a stair lift too now which he is able to use but slowly), when he leaves the house which is rare he has to be in a wheel chair now, he has also had a few falls.

4.Dad has become very confused, almost similar to someone suffering with Demenzia, an example is waking up at 7.30 putting on his slippers and calling my Mum saying he's ready to go out now. My siblings and I were discussing birthday presents for our children and Dad suddenly want to go out shopping but then asked if someone was coming to him to sell him things at the door. There have been many odd occasions/conversations which is heart breaking to see.

5.Dad has had a few bed wetting accidents and also need help from my Brother or my Husband with help in the toilet - and is embarrassed that he needs there assistance - not that they mind. 

6. He literally sleeps all day, wakes for a quick kiss, cuddle, hello, because he's thirsty

7. His appetite has become very slight

We managed to get Dad out of the house to attend my Grandads (his Father in laws) funeral last week, but getting him in and out of the cars was so tricky and you could see in Dads face just how hard the day was for him, both mentally and physically.

I have spoken openly to my Mum about Dads sudden deterioration which is why we have the Hospice nurse coming tomorrow.

If anyone has any advice on what we should be asking I would appreciate any help.

Dad is having a hospital bed delivered next week to make sleeping more comfortable.  

It's a very sad time, I feel like we are losing Dad (I know that is obvious) but even visiting now (I go most days) he smiles but he's not really there when we talk, or doesn't seem to grasp much.  Myself, Sister, Brother and my Mum to have all been crying allot in our own time or with each other lately, as we fear the time we have left with Dad is growing shorter rapidly and it's so hard seeing him look so frail.

I just can't imagine our world without him in it, he's always been the centre of everything our family does, then there is poor Mum, she's spent the last 6 years looking after Dad and her own Dad - and sadly as mentioned above he passed away at the beginning of May and now it looks like my Dad hasn't long, my Mum will be lonely (although she has us I know but I mean at home)

Thanks for listening to me as always - it helps to clear my thoughts. 

Dad has never complained about having cancer, the pain, the troubles nothing ever - until last week he said 'I've had enough now'

:( it breaks my heart to see him like this now. x

User
Posted 23 May 2016 at 21:52

Just to say, stay strong and take care of yourself too. I feel in a similar situation. My own dad seems to be deteriorating very suddenly too and I'm not really sure what is happening. He is having a lot of pain and the stronger painkillers just make him sick. His appetite is very poor and he is having difficulty moving around. Next appointment with the consultant is still a few weeks away. Sometimes it feels like everything is about to end and then a little while later things feel a little more normal again. I'm trying to make the most of those times and relax so that I can have the strength to cope. Take care x

User
Posted 23 May 2016 at 22:10

Hi cat what a terrible time it is now for you all you are so strong describing what is happening and all I can do is cry, I feel your situation and can do nothing about it.

Try to take positive memories from the time that you have with your dad stay strong for your mum and make your dad as happy as you can with the time that you have left.

I am thinking of you all, regards Chris/Woody

Life seems different upside down, take another viewpoint

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Posted 23 May 2016 at 22:24

I'm so so sorry cat. Even knowing like you did, that this was on the cards, it doesn't make it any easier.

Your dad is tired now and wants peace. He would also want to know, and I am very sure that he does, that you all love him and want what's best for him.

There really isn't anything much that any of us can say to make this easier for you and your family.. You will continue to support your mum, and each other, sharing all the good memories.

It will be almost impossible for any of you but, if you can, then save your tears for when you are with each other while you're with him. The time left is so precious that he'll need the comfort of the familiar faces round him, with the familiar smiles and love for him shining through.

I am thinking of you all. I have been in this situation so many times in the past years that I really do understand how you feel.

Love and best wishes to you all

Sandra

We can't control the winds - but we can adjust our sails
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Posted 23 May 2016 at 22:30
Oh Cat

My heart goes out to you all, I know what you mean about writing it down making sense of it somehow. This time in your lives can only be endured, concentrate on making him comfortable and talking about nice times when he feels able or if you are keeping him company while he rests. You are a very loving daughter and I know you'll support your mum through this and afterwards. We are thinking of you Cat.

Lots of love

Devonmaid xxxx

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Posted 23 May 2016 at 22:30

Dear Cat,
Very hard times for you and your family. Your family sound very loving, love and care is very special at such times.
Try talking about special times you had together around your dad, it may help you all and him too.
My thoughts are with you.

Leila X

User
Posted 23 May 2016 at 22:57

Thinking of you all. It's so hard for you to watch your dad like this. 

Big hugs

Rosy

User
Posted 23 May 2016 at 23:07

The answer is in your writing - dad has had enough now and is preparing to let go. As hard as it is to face these coming days and weeks, there will be a time in the future when knowing that - knowing that this was no life, that his situation had wearied him beyond imagining and he had in the end still retained some control over this horrid disease - will give you some comfort and strength.

Things to ask? What support is available if he (and your mum) wish him to die at home? Is there a night sitter service? If you didn't get round to applying for the disability/terminal illness benefits & disabled parking badge, now is the time - the nurse can probably point you in the right direction. And is there a local day care centre that dad could possibly visit - many find great comfort in the alternative therapies and other services offered. There may also be counselling, aromatherapy etc for you and mum?

Don't forget to look after yourself while you look after everyone else.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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Posted 25 May 2016 at 00:58

Thank you all so much for your kind words and guidance. 

The Hospice nurse who looks after Dad, was lovely - wow these ladies & gentleman really are something special, she showed such kindness to us all today - which is such a great support.  She was patient and professional and I could tell my Dad was happy with her and has known her for a while now so that's also nice - she talked about visiting her son in Australia which made me reminisce with Dad about our trip to Oz when I was 18, I tagged along to my parents 25th wedding anniversary present to each other which was a trip to OZ :)

So.

The hospital bed needs to go downstairs as this will be better for Mum, so Dad isn't stuck upstairs.  Debbie (the nurse) said Dad is very very poorly now and even the short walk on his crutches to the downstairs loo is way to much for him (he can barley do it), she explained to Dad that he is very very sick and that there isn't much point doing another blood transfusion as it won't really help him now as she thinks he is too weak to even leave the house to have it and doesn't want added pressure on him.

She talked about staff coming to help Mum, and night sitters (for when they are needed), she asked Dad how he finds showering and he was honest and said it's too much for him, although he just sits in it (it has chair) and mum does all the washing - so I think this is going to stop and washing from the bed will happen.

Medication and pain relief got sorted, as apparently Dad will need it injected eventually.  She asked my darling Dad about resuscitation - to which he said he didn't want that.

I said we don't want a 'time' but, always a but eh? My Siblings and I are thinking we still have many months, are we right to think this and she said no, seeing your Dad today he is very poorly and you may only have weeks now. (this was not in the same room as my Dad as she thought it best to let him rest). Tough to hear.  She said Dad is very vague and off in the distance somewhere (sometimes, not all the time), but he's not really sure of what is going on around him.  He knows who we all are, and still cracks the odd joke but today he tried to stand up because he said 'the bloke in the room told him to go and move his car' it was only me in the room. 

Dad cried today a few small tears, I think it's the first time i've seen him cry apart from at his Dads funeral when I was 18 (I'm 39 now) at our weddings. He held my hand and asked us 'if he's done okay' and he's sorry it's all happening so soon. Wow done okay!!, he is simply the bravest person I've ever known 6 years of stage 4 advance prostate cancer, so many treatments, and operations, metal rods, spinal cord compression, ulcers - he's dealt with it all and never moaned. 

We shared the news with my Sister and Brother and have all been together today.

I love him so so much - words cannot ever emphasize my love for him, and how wonderful he has made our lives, but I'm actually ready to let  him be at peace now and I don't want him to suffer anymore.

Hard to say that as of course I also want every second I can will him - thank goodness I live 5mins away, I go daily and annoy him (we laugh about this, as I am forever turning up at their house, morning, noon or night) he likes really he says he misses my voice as it's so bloody quiet once i've gone.  

I'm really sorry for my long essay....

The journey isn't quite over yet, but every minute and second you have to be with the ones you love is truly the greatest gift we have... treasure life, love, family and friendship and we will all always be okay.. x

User
Posted 25 May 2016 at 07:26
I think that you and your family are wonderful. Your Dad is very lucky to have so many caring folk around him. I feel for you too and really hope you can enjoy as much time with him as possible.

Take good care of yourselves ,

Best wishes ,

John

User
Posted 25 May 2016 at 07:41

hey up cat
the story you tell of your dad must have been so difficult, your love for him leaps from the words, mam has a wonderful family to look after her, and don't forget to look after your self over the coming weeks, do not apologise for long essays

regards and hugs
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 25 May 2016 at 08:03
Cat

Dad is blessed to have such a loving family around him. Look after yourselves.

Thanks Chris

User
Posted 25 May 2016 at 08:22

I've shed tears for you this morning cat and believe me ~i don't do that very often.

Strange to say but I'm glad you've reached that stage, where it's better to let go than hang on to hope.. It will make it easier for you.

Again, nothing much anyone here can do for you, except be here, and you know that already.

My best wishes to you all

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 25 May 2016 at 14:25

I felt so sad for you and your family when I read this. It is like a rerun of my husband's last weeks. Spend as much time with him as you can and make sure you all look after each other.

With big hugs

Rosy

User
Posted 25 May 2016 at 15:00

Hi Cat
I'm very new on here but having been reading your story with tears running down my face, Your dad seems such a lovely person and so VERY brave as are you, you should all be so proud of each other,
Take care of yourself
Viv 🙏🏼

The only time you should look back is to see how far you have come
User
Posted 25 May 2016 at 15:41

Wow, Thank you all so much for your comments and love.

I have spent this morning with Mum (and Dad) calling their many friends and letting them know the situation we are now at with Dad. Most difficult being my Uncle, Dads Brother who lives in Australia, it's mentally draining for my Mum repeating the same information and listening to people cry and ask if they can visit. Dad bluntly told his Uncle 'that's it now Brother i'm sorry but I'm dying I shall just go to sleep soon' it really is like my Dad knows this coming.  I asked him if he was okay, or scared he said no babe, I just want you all to be okay to which I said how much we all love him, proud we are, what a great life he's given us etc and that he's not to worry and rest now when he needs to.

Dad sadly is so much worse today, I didn't think 1 day - well actually only 14 hours since I last saw him, could be such a difference, but it really is.

Today Dad hasn't been able to get out of bed, he is in pain. He is sad, he looks very poorly, he only managed two teaspoons of yogurt. Mum has been up all night checking on him, after a few accidents, the nurse is coming to fit a cafeta 

He kept telling me he loved me and that I wasn't to leave his room without kissing him (as if I would) I always give a zillion kisses, he said the same to my Mummy. He asked where my Brother and Sister were and why they hadn't come to see him. He seems to have no idea of time/day etc I explained they were there  yesterday (my Sis) and only a couple of days ago (my Bro) but he kept asking me after them. He also told me I would be okay.

I watched him sleep, I laid next to him a cuddled him, I shed a few tears watching this beautiful man I know so so well, getting more distant.(in a way he's preparing us, normally he would cuddle me until the cows come home, but he doesn't really want too many cuddles now - he's in pain :(

I told my Mum my fears at how worse he seemed and maybe i"m over imaging things, but I felt it right for me to tell both my siblings to pop by today if they could - I fear we don't even have weeks now. 

I went to the chemist for bed pads, went to the Doctors to explain that we need a doctor to home visit Dad today, as the Hospice nurse said sadly a Doc must see him in this condition to make the end process smoother.

Then I went and met some dear friends for a birthday lunch on me, and we shared some wine. I nearly cancelled but it's odd how doing something normal has helped me. I will pick up my babies 5 & 2 soon and they will make today happier for me, my little bright sparks.  Children have a wonderful tendency to make the darkest of days brighter - my girls are my strength. I don't know if they will get to see my Dad again, (heart breaking as they adore him) but he's too poorly for them to visit him at the moment.

Tomorrow I must go to work, and my Hubs is going to help my Mum throughout the day.

Catherine x

 

User
Posted 25 May 2016 at 15:57

Hi Cat
I can't say anything more than my thoughts are with you and I admire your love and strength and support for your father and family. Sending love and wishes
Chris

User
Posted 25 May 2016 at 16:07

You made me cry reading this. It sounds as though all of you, including your dad, have accepted that the end is near. In many ways this makes things easier as you are able to say your goodbyes and to say the things that you want to. 

Make sure you get the pain control sorted - hopefully the doctor will have done this but don't hesitate to call your hospice team at any time, night or day, for advice on what he can have. Then just try to make the most of the remaining time you have.

Lots of love

Rosy

User
Posted 25 May 2016 at 16:08

Sadly, I think your instincts are probably right and that it may be days rather than weeks. The human body seems to have an uncanny ability to prepare and then let go once the mind and spirit are peaceful and it does seem from your writing that dad is at peace with his situation.

Whatever happens next, he will still hear your voice long after he stops speaking and he will still feel you touch him lovingly long after he can hug you back. Stay strong

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 May 2016 at 18:42

Oh Cat, I don't know what to say. I pray that your Dad's passing on will be calm and serene for both him and all his loved ones.

David

User
Posted 25 May 2016 at 19:23
Dear Cat,

Your post is that of a loving daughter, my thoughts are with you all at this time. Lyn is right, often the last sense we loose is our hearing.

You will be in my thoughts.

Leila xx

User
Posted 25 May 2016 at 21:48

Hi Cat, so sorry that the time is so near for all of you. Your dad will be out,of pain soon and will always be part of your hearts and memories, I have read your postings since February and they have touched me so much as to what a lovely person you are, the way that you have helped and cared for your mum as well,as your dad is remarkable.

You are strong but will have to stay strong cherish every moment that you can take from this.

My thoughts are with you all at this sad time

Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 25 May 2016 at 22:05
I am so sorry to read about where Dad is right now, you are doing all you can, he must be very proud, take care. Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 26 May 2016 at 22:27
Cat

You are a brave and wonderful daughter, you will never regret spending this time with your mum and dad, one day you will look back on it and smile (not at the bad bits, but the brain is amazing and will tend to let those go so that only the love remains). It's good you have some "normal" life to balance this out a bit, you can't be sad for too long with tiny people to care for, that's a blessing.

My heart goes out to you and your lovely family.

With love

Allison xxxxx

User
Posted 26 May 2016 at 22:52

Me again.

So today I worked from him but at my Mum & Dads house so I could keep an eye on Dad while Mum popped out to run some errands.

I wasn't prepared for having to cope with other peoples emotions though, nothing could have prepared me for that. Today my Dads cousin came and her husband, my Dad and her are very close they are like Sister and Brother as the grew up together - she totally broke down, several times. Then 2 of my parents closest friends came, one my Dad went to primary school with, they too both fell to pieces - their daughter who is my age also came - she burst out crying as soon as I opened the front door. Then my Aunt from Australia called and i had to have her on loud speaker and hold the phone for my Dad whilst she said her goodbyes.

All these emotions and tears, people grieving for someone who is still here but sadly also not so with it today. No one got upset in front of Dad but I wasn't prepared for the love people have for him to just keep pouring out. Mum and I had to try to be strong for them all, it was bloody hard...

Dad, didn't really know what was going on, he slept all day, didn't want to eat, and was a bit of a Grump. He told me to go away twice (I don't mind) I know he doesn't mean it - he is very spaced out now.

Mum needs help now as Dad won't let her change his clothes and he's too big for her to manage by herself.

My Brother is coming Fri- Sun to help with Dad & hopefully give Mum a chance to sleep as she's not sleeping.

At Christmas my Dad came shopping with me as he wanted to buy my Mum a Pandora bracelet, it was hard for him back then on his crutches - only to be told what he wanted was sold out. He had always planned to take Mum shopping to get this special bracelet and charm he had chosen, but they never got to the shops together. So today I went out and got what he had chosen and my Sister and I took it up to Dad & tried to explain we had got the bracelet for him to give to Mum. I hope we did the right thing, Mum got very upset. My Dad wanted Mum to have it so much and we wanted to make this little wish true for him and her. A perfect solid gold heart on a lovely chain. Something hopefully that in the next months with give comfort when she wears it.

I'm going to my parent house again tomorrow, to help Mum - so not sure what to expect. More visitors and hopefully not a stroppy pants Daddy :)

x

User
Posted 27 May 2016 at 06:31

Sorry that you had such an emotionally draining day cat, but you can't stop people grieving. It is an extra burden for you but I'm afraid one that you have to shoulder. People don't stop to think how it affects you. Other peoples' grief when you are struggling with your own can be very very tiring.

What a lovely gesture to make for your dad and I'm sure that mum will always love that bracelet. Even if he wasn't physically able to go and get it the fact that it was the one chosen by him will mean a lot.

Good luck today. I know you will be as strong as you have to be.

We can't control the winds - but we can adjust our sails
User
Posted 27 May 2016 at 10:37

Hang on in there Cat. You're doing so well.

The bracelet was such a good idea. Funnily enough my husband gave me a pandora bracelet for Christmas - my daughter helped him to buy it online. It is very special to me and on my birthday I bought myself a new charm for it 'from David'. I'm sure it will mean the same to your mum.

User
Posted 29 May 2016 at 21:38
Oh Cat

Tears upon tears were shed here reading your post. Such love for your mum and dad. I can say no more. Sending massive hugs.

Xxxxxxxx Devonmaid xxxxxxxx

User
Posted 30 May 2016 at 05:35

hi cat

your doing great

regards

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 30 May 2016 at 09:08

Just caught up with your post and wanted to let you know I'm thinking of you. xx

fiona.

User
Posted 31 May 2016 at 23:43

This forum has been my help, guidance and friend over the last 5 years. I appreciate every single person who has taken the time to read my posts, guide me, and who has been there for me. So many people have helped me and for that I would like to say a very heart felt Thank you ...

It is however with huge sadness that I share the sad news of my Dads passing. 6 year of fighting the decease that had already spread so far - he truly is our Hero.

Thankfully I stayed with my Mum & Dad last night along with my Brother - Dad became ill in the night and was in some discomfort - we called the nurses out at 3am and they tried to settle Dad, we sat with him all night long. At 5am while Dad was sleeping Mum and I popped into the living room for a cup of tea, I checked Dad at 6am and he was still struggling but was in & out of consciousness while sleeping. Mum and I both must have nodded off and at 7.30 Mum woke me to say Dad had gone.

Such a brave brave Man, even until the end and he waited until we were sleeping before he left us, he didn't want us there when he took his last breath.

My heart is breaking right now, today has been extremely hard but I know at some point the hurting will end and time will heal us. How lucky am I to have had such a wonderful Dad, I have no idea how life goes on without him but I will do my best to make him proud of me while he watches over me.

Love
Daddys Little Princess x

Edited by member 31 May 2016 at 23:44  | Reason: Not specified

User
Posted 01 Jun 2016 at 00:39

Hi,

I'm so sorry to hear that your Dad has passed away. 

Nothing I can say is going to take your pain away just now, I wish I could, but he was so lucky to have a loving family around him.  I do hope in time that it will become easier for you all, and that the memories of the time you shared make you smile, rather than bring a tear.

Thinking of you all at this difficult time.

May he rest in peace.

Steve x

 

User
Posted 01 Jun 2016 at 02:41
So sorry to hear your sad news, thank you so much for sharing such a personal journey it has helped many of us understand and prepare. My sincere condolences to you and your family.

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 01 Jun 2016 at 05:02

So truly sorry to hear of your loss, I have been following your journey over the last couple of weeks and think you and family are so brave and inspirational, Please take care
Viv xxx

Edited by member 01 Jun 2016 at 05:02  | Reason: Not specified

The only time you should look back is to see how far you have come
User
Posted 01 Jun 2016 at 06:07

I am so very sorry to hear your sad news. You have done everything you possibly could for your dad and he is surely very proud of you already. Look after each other in the coming days and weeks and do take care of yourself

Much love

Rosy x 

User
Posted 01 Jun 2016 at 06:14
I was really sorry to read your news. I know that you must all be devastated but I hope in time you will come to cherish all the great memories you have of him.

My condolences to both you and your family.

John

 
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