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Supporting my elderly dad with advanced stages

User
Posted 05 Sep 2015 at 07:45
Hi,

Have had a roller coaster of last 3 years supporting my elderly parents, both in their 80s but living very independently, my dad having been diagnosed with advanced prostate cancer with spread to bones. From knowing nothing about cancer to knowing the ins and outs of the impact on the patient and their close family of having a diagnosis and a life sentence having over your loved ones head, I feel like I have been through it all. When he was first diagnosed I fiercely googled for info and scared myself shitless by reading all the stories. Everything seemed so doom and gloom. My dad was Gleason 9/10, PSA in the 200 range, terrible bone cancer pain from the mets, and could hardly eat. I'm an only child (daughter) and although I'm 45 and live an hours drive away from them, am exceptionally close to them. Even though my dad is in his 80s, he was not your typical 80s, he ran his own business and only retired at 80 when just shortly before his diagnosis. He got hormone therapy and amazing he beat all the odds and has been living with it for past 3 years. It's been a roller coaster of a 3 years. We've had good periods and dark periods but a lot of laughs along the way. As a family we've learned to live with cancer, the 4th very present member of our family along with my mum, dad & I.

So why am I here now saying hello? Well, the 3-5 yrs the hormone therapy can give you on average seems to be running out. His PSA is rising, pain from bones terrible and has had an impending spinal cord compression on his spine. He got radiotherapy in Jan this year which helped pain mngt. A full body bone scan has shown extensive spread of the mets all through his bones. He is getting half body radiotherapy next week to try to help the pain. Once they treat his bottom half, after 6 weeks they will treat top half. He's gone so badly downhill over past 3 weeks, both mum and I are really worried. Is this the start of the end? Do we start to face up to the realities of his active life now ends and he can't walk/ends up bedridden/ in hospice ? He bless him has battled with depression over the impact of having terminal cancer hanging over him. He might be in his 80s but he wants to live forever! He doesn't know things are quite bleak.

So yes, here I am, saying hello, hoping to find some friendly virtual faces, to share the next few months with as we go into the next & probably final chapter. For anyone newly diagnosed at the elderly stage, I'm happy to share some of the positive stories, it's not all doom & gloom, even if things seem stacked but not in your favour. If anyone has been through half body radiotherapy I would be very interested in your experiences of this. If anyone has been through this and can help offer some advice of how best to support my poor exhausted mum through the next few months, I would very much appreciate it.

Fabbi

User
Posted 05 Sep 2015 at 10:26

Hi Fabbi

You have been a brilliant support, and that's all you can continue to do. Be there for both parents, try to keep some humour going, laughter is the greatest medicine in the grimmest of times. You will see my thread that shows the experiences with my dad. You may not wish to read it all, but you may find it a help.

I think when we post on this site, it is not just therapeutic for the writer, but hopefully helpful for others who find themselves in a similar position.

Paul

Stay Calm And Carry On.
User
Posted 05 Sep 2015 at 10:31

Hello Fabbi and welcome

Paul has just beaten me to it, I was going to suggest you looked at his posts regarding his father's situation.

Your dad has had your love all his life and he will until the end of his life.

As for your mum, you will help enormously just by being there and being supportive.

I wish you all the best and hope that something can be done for your dad's pain
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 05 Sep 2015 at 12:56

Hi Fabbi, I don't think you are anywhere near the beginning of the end - they wouldn't be doing such radical radiotherapy if they thought he was at the terminal stage.

Lots of things still for your dad to try :-)

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

User
Posted 05 Sep 2015 at 13:03

Sorry, I missed the comment about your mum. If you haven't done so already, now is the time to get to know the local hospice outreach team or Macmillan nurse. They are usually brilliant at helping families apply for financial benefits, help with home care, respite, day centres to give mum a break, they will have volunteers or social workers who can offer counselling/a friendly ear/cup of tea & sympathy. Most important, Macmillan and hospice staff tend to be MUCH better at pain control than the hospital oncology teams.

Hospices are not just for the last days of someone's life - they can help you to continue to create those happy memories as you have been doing for the last 3 years

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

User
Posted 06 Sep 2015 at 08:21
Paul, Sandra & Lyn,

Thanks so much for your lovely messages of support & hope. I am about to go hunt out your story Paul re your father. It's sounds like this could help me a lot.

Lyn, thanks so much for your suggestions. The good news is the Macmillan nurses have already been closely involved with my dad and have been coming in weekly to support him through the many crisis over the past few years. Our Macmillan nurse has been a complete tower of strength and unbelievably helpful to get better pain control. The local nurses also come in to advise and provide help to my mum on incontinence products and give his quarterly hormone injection. I don't know what we'd do without all these amazing people.

Fabbi

User
Posted 06 Sep 2015 at 15:33

Hi Fabbi,

Has your Dad received either Zometa or Denosumab with mets in the bone both are great for bone strengthening and can help with pain.

Agree with Lyn lots more to offer yet, i would be asking for Abiraterone next very little side effects a great drug.

Best Wishes

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 29 Dec 2015 at 22:29

Just wanted to update on my lovely dad. After having the hemibody radiotherapy in Sept, which helped a bit with the pain control, his condition worsened. He went into hospital for pain control for a few days but caught a chest infection while in the ward. He fought it bravely for 3-4 weeks but his immune system was non existent and while he improved enough to come home, he died at home on 14th Nov with mum & I with him. We found out while he was in hospital that his PSA had shot up to 33-34, so it was simply a matter of time. He had become morphine intolerant and was on a ridiculous concoction of drugs so the pneumonia which got him in the end was a blessing really. The nurses and all care staff were amazing, really incredible and supportive.

He had 4 amazing extra years thanks to the hormone injections, and given how bleak things were when he was first diagnosed, we are very thankful for these extra years . We have had 4 roller coaster years living with this horrible disease, and pretty much a medical emergency every few months to keep us in our toes, but if there is one thing I have learned in that time it is this.. having a strong positive attitude and a will to live definitely helps.

As an only daughter/child, supporting my parents live through this and cope, it's been hard but got a lot of support and comfort by reading forums such as these ones. Thanks to everyone and I wish everyone well in their own personal fight against prostate cancer.

Fabbi

User
Posted 30 Dec 2015 at 05:28

hi fabbi
dad must have been really proud of you, but sorry to read of your news, take care of mum and yourself

regards
nidge

run long and prosper

'pooh how do you spell love'

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

User
Posted 30 Dec 2015 at 07:40

Hi Fabbi
I saw this just before retiring last night. I'm so very sorry for you and the family and at a time of year which makes it worse and more memorable in some ways.
You have a beautiful , bright , kind smiling face that would melt many a dad's heart. I'm sure you made him very proud and happy.
Chris

User
Posted 30 Dec 2015 at 09:39
Fabbi

So sorry to hear of your loss,you are in our thoughts.

Chris

User
Posted 30 Dec 2015 at 10:21

Thinking of you and sending my love.

Fiona.

 

User
Posted 30 Dec 2015 at 12:37

So sorry to read your news Fabbi. You and your mum will be in my thoughts.

You loved and cared for your dad and mum throughout all of this and it must have been a great strain on you, being an only child.

I know that you have, and will continue to , loved and supported your mum, especially in the early lonely days since you lost the light of your life.

I am sure that being such a close and loving family you will have memories to treasure.

I am thinking of you both and wish you all the best

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 30 Dec 2015 at 18:17

So sorry Fabbi to read of your loss I have tears in my eyes now, you will still need to be strong and positive from now on just to be there for your mother. Please do not forget yourself as you also are grieving, talk to as many people as you can to maybe keep sight of where you are and where you might be going.

My thoughts are with you.

Best wishes Christ/Woody

Life seems different upside down, take another viewpoint

User
Posted 30 Dec 2015 at 18:26
So sorry to hear your news Fabbi my deepest condolences to you and your family
Don't deny the diagnosis; try to defy the verdict
User
Posted 30 Dec 2015 at 22:48
So sorry to read this FAbbi,

What a wonderful last post for your Dad though I am sure he would be very proud of you.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 31 Dec 2015 at 01:50
Hi Fabbi,

I'm so sorry to hear of your sad news and just wanted you to know I'm thinking of you.

Steve x

User
Posted 31 Dec 2015 at 18:02

Fabbi, I am so sad to read your post - but your dad will have known how loved he was and must have been very proud of you

I hope that knowing you did everything you could will comfort you in the days, weeks and months to come

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

User
Posted 01 Jan 2016 at 10:56

I So sorry to hear your news Fabbi my deepest condolences to you and your dear Mum,

you have been through a lot

User
Posted 01 Jan 2016 at 16:48
My sincere condolences Fabbi, thank you for sharing what happened and how brave your dad was.

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 Jan 2016 at 17:06
Fabbi

I am so very sorry for your loss, my condolences to you and your family. I know you will be giving all the support you can to your Mum now, as others have said your Dad would know that his beloved wife would be comforted and cared for by his beautiful and kind daughter.

I know it is easy for us to say but it is also very important that you take some time to think about yourself, grieving comes in many ways and we all handle it differently. If you need to talk and have nobody close at hand, there will always be someone on this forum that will listen and try to offer you words of comfort and support.

You are in my thoughts

xxx

Mo

User
Posted 01 Jan 2016 at 22:04

Fabbi,

So sorry you have lost your Dad to this rotten disease.  I am sure he greatly appreciated the support you gave him.  You will happy memories of him to cherish.

Barry
 
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