Mesothelioma

A place for people affected by mesothelioma to support one another, ask questions, and share their experiences.

Rapid decrease in health

AprilTS
Posted by

Hi Mand

It's been a tricky few days since my dad moved in with me on Saturday, mainly because he was having bad bouts of pain in the mornings, in spite of having taken all the medication he's allowed. It's started to settle down now though and today was the best yet. He has been able to shower himself using a bath board and got dressed for the first time today. I managed to take him out to one of monthly groups and he thoroughly enjoyed himself. We made the mistake of thinking he could manage a little shopping afterwards but he got rather grumpy and things got tense. I've learnt from that and will make sure he doesn't get too tired in future.

He's registered with a doctor now but still hasn't heard from the Hospice and I want him to have a medication review as soon as possible.

April

Happily retired animal lover
Mandg42
Posted by

Hi April 

has your Dad managed to have his medication reviewed? It’s a constant change isn’t it, how’s he doing have you managed to do much?

its all gone balls up for my dad, we were struggling at home with him so much, my brother was up most nights and then dad would be so agitated and scared in day almost like battling sleep, he went to a care home on Friday which I absolutely hated and then luckily was assessed for the local hospice which he was transferred to yesterday he’s also been put on drip for medication as he is struggling to swallow,  they think he has less than 2 weeks. I’m back home now to sort Xmas for the kids then hopefully we can go back.

It is awful to say but I hope he passes peacefully and doesn’t go on for ever like this as he would hate it.

i hope everyone has the best Christmas they can given the circumstances

AprilTS
Posted by

Hi Mand

Thanks for asking. Things are settling down but dad still has episodes of acute pain when nothing seems to help him. I've even tried tens which did at least distract him for half an hour. They are unpredictable and happen at any time of day. Thankfully once he gets to sleep at night he sleeps well and doesn't wake until after 9.00. He's been issued with enough morphine to tide him over Christmas, such a relief. We're very lucky that his medications aren't causing confusion, although he's had short term memory loss for a couple of years. He's developed a darkened area where the wordy pain is in his back. Which could mean the cancer is breaking through the skin.

I don't think he's been referred to the palliative care team yet, although I keep asking. He badly needs a medication review and advice about care of his skin over the cancer. 

We are so lucky that dad still has good periods when he's almost pain free, takes an interest in life and enjoys what he's able to do. He still likes planning holidays and days out, although realistically I don't think any of it will be possible.

Thank heavens for the hospice movement, and that they were able to offer your dad a bed. At least that means you can visit him without feeling you've got to be his carer. I hope he is able to have a peaceful pain free end, surrounded by people who love him.

April

Happily retired animal lover
Mandg42
Posted by

Hi April

So glad you have the time with your Dad, treasure every moment

My dads doctor and lung nurse were amazing at changing his medication definitely push for it to be reassessed after Christmas.

I have spoken to my mum today and she is sooo relieved that Dad is now in the hospice, it’s such a better environment for everyone involved. I’m trying to focus on my kids right now they’re only 7 & and need a bit of normality, I’ve still not decided if they should go see grandad because they haven’t had chance to say bye or whether it will affect them badly

AprilTS
Posted by

Your children are similar in age to my grandchildren, so you face some of the same dilemmas. They saw my dad in hospital and more recently at my home. I've been very honest with them and answered any questions as truthfully as possible. He was in too much pain to see them when they first arrived and we told them he was in bed having a rest which they found frustrating. When he was able to get up and see them, he found it difficult to cope with their liveliness, and was a little grumpy with them. We'll have to decide how much they see of him in future, depending on how well he feels.

April

Happily retired animal lover
Mandg42
Posted by

Hi April

yeah I totally get that! My daughter spent nearly two weeks on her tablet so she wasn’t noisy or a pain while we were there.

My Dad passed last night just after midnight, the nurse said his breathing changed then he went in his sleep

Im glad he’s not suffering anymore

AprilTS
Posted by

Oh my goodness, he went quickly in the end. I expect you are shocked and grieving, and still got a funeral to arrange, but at least you know he's at peace now. 

Your mum is your priority now, and I expect she will be comforted by the presence of you and your brother and perhaps distracted by the antics of your children, when she feels up to it.

April

Happily retired animal lover
Mandg42
Posted by

Hi April,

sorry haven’t been on much, how are things going with your dad at moment?  My Dad has been released to funeral home this week and his funeral will be on 27th

having good days and bad days, the kids distract me and make me laugh. Good news is my mum will be moving in with us she has helped us with a deposit for a mortgage so we can get a house big enough for us all. That was the most upsetting thing for Dad and he cried a few times over the thought of mum being on her own.
you have been in my thoughts x

mand 

AprilTS
Posted by

Hi Mand

I'm touched by your thoughtfulness in contacting me in the midst of your grief. It sounds as if you have been able to start thinking about the future, and sharing a home with your mum could be a very positive outcome for you all.

Dad's ordeal is still going on. He has deteriorated very rapidly and is now confined to his bedroom as he's no longer safe using the stairs or even walking to the toilet along the corridor. He's just changed over to Fentanyl patches as he can't swallow reliably and has been getting periods of confusion, possibly caused by the new medication. They do seem to be helping to reduce his pain though. I'm still trying to manage him at home but it's not easy. All the nursing services are well meaning and caring but trying to actually get practical help is a nightmare of red tape and buck passing. 

April

Happily retired animal lover