Making the most of it

Dear Kentish,

I’m heartbroken for you all. I‘m at a loss of what to say. So, I’ll do my best to reassure you that you, N and the kids are coping remarkably and are truly amazing. You really are making the most of it and still managing to create magic moments to last a lifetime. I think that N knows, that you know, that he hasn’t given up. He is so thoughtful and is making sure that he tells you before you go home. 

We aren’t at this stage yet but it’s coming. On Laurence’s initial oncologist report it states ”12 months overall median survival.” He was admitted last June and had tests during his two week stay. DRE, CT scan, MRI and biopsy.  The subsequent results formed the basis of his prognosis. We too are making the most of it. Today we watched two episodes of ’The Wire’, one episode of  ’Mother, Father, Son’ and an episode of ’Vera’. Rock and roll it ain’t but L made us a lunch and we sat cosy and warm while the rain poured outside. L dozed at times (The zomorph zzzz’s) and the dog snored. It’s at these times that I have to force my mind to not wander too far into the unknown.   

I am at work tomorow so i suppose I’d better try and sleep. I’ll send you love and strength to face the day ahead. 

You are in my thoughts. You are remarkable.

love from Vicky xx 

Oh, ladies, just at the moment the thought of being cosied up sounds blissful.  Hope today is indeed a boring, uneventful one, Kentish.

We are back in hospital, sadly.  The last week at home has been very difficult, and sadly in H's very confused state he has decided that I wasn't getting him the help he needed, so is now so angry with me and doesn't want me near him.  Heartbroken doesn't begin to describe it.

That's horrible for you both, I hope they are able to settle him so he is able to be more like himself. Thinking of you.xx

Oh Kentish

so sad to read that they’ve given a timeframe, it could be right but maybe not, its always hard to know what to wish for when someone you love is so ill. i have a very strong memory of my most loved brother in law, throat cancer, one year prognosis, made three months and looking at him and knowing that there was no way he could carry on, it helped me, if not my sister at the time, though yes, it does now with the passage of time, he was 52 years old. That’s one of the many reasons I feel so lucky that we have had more than eight years, despite the challenges along the way. I hope what I’ve said isn’t insensitive, I think we tend to be realists here, with our humour and our empathy and our dogged determination to say it like it is. Please forgive me if I have been insensitve, I hope you know that I’m trying to say that it’s not wrong to want it to end when the time comes, even as painful as that is. crying now at the thought, its very raw for us isn’t it and brutal.

I think you are all immensely brave and an amazingly loving family, your childen are such a credit to you and their chit chat must come as a welcome distraction and a joy. They sound so mature even though what they are going through is the worst thing anyone can imagine.

I hope that N decides to stay put but i think hospices can arrange for short home visits if you both want it and can cope. My friend (Mo, who was a massive contributor here) brought her beloved Mick home for one day, he had SCC so it was quite something to organise. 

Teacups, my heart goes out to you, not only do you have a seriously ill husband but you are getting all the blame, it’s so unfair. I hope with the right meds he will see that you are doing your best, what more can any of us do. I know my sister has a lot of unresolved conflict from being shouted at during the last weeks of her husband’s life, it was genuinely awful and has left lots of mental scars. Understanding it is one thing, forgiving is another and easy to do given the situation, but forgetting, no never, that’s much more difficult.  It cannot be resolved, only forgiven and left in the past when the time comes, but that has taken a long old time, and will never completely fade. I think that’s where hospice support really can help as she had none until his last few hours on NYE, yet another one our family would like to forget - it always seems to be NYE that bad things happen to us. Hugs.

sorry for the ramble, no alcohol was consumed, just thoughts on a sad subject, close to my mind for obvious reasons. How will I cope, when this comes my way? I hope i can learn from those who have trodden this sad path before.

on a brighter note, John seems to be quite reasonably well at the moment, bloods taken today in prep for oncology on monday, our first results since he started on the Enza. I am truly grateful for each and every day.

Thank you both for updating, my love goes with you both.

with love

Devonmaid xxxxx

Edited by member 13 Mar 2019 at 23:07  | Reason: typos as usual

Devonmaid,
“its always hard to know what to wish for when someone you love is so ill.”
You hit the nail on the head there, after the children and I talked all three of us agreed that although we want N to stay we all wished it was over for him.
I don’t think anything you have said is insensitive, I think you are honest and keeping thoughts like these to ourselves hurts because we feel so guilty for wanting it to be over even though the motivation for the thought is for your love’s relief from pain.
The sodium has taken a nosedive again and the hospice felt it would be a good idea to try the demeclocycline just one more time and that they didn’t think the previous attempts were the cause of the horrendous symptoms, just a really unfortunate coincidence. So, psychosomatic or not N is feeling pretty ropey today and has had 2 extra doses of anti sickness meds, lost his appetite and is very, very tired.
He’s also developed a phlegmy cough and bubbles when at rest but because he’s so deaf, I don’t think he can hear it, though I’m finding it quite distressing to listen to!
When I’m at the hospice, I change N, wash him, help cut up food etc, get drinks. The staff are always asking if I need help or want to take a break, I feel so useless just sitting there waiting for someone else to do it. He only asks me to take his dentures to be brushed, if I didn’t do it then he probably would have stopped using them. I also wash his fingernails, this is something they don’t do either in hospital or in the hospice, strange that they wipe bottoms but don’t use a nail brush…I don’t know why.
I hope the enza is having a positive impact and the chest pain was just a dream, love and hugs to you both.xx

Teacups,
Hoorah, I’m so glad you feel he is well cared for, it goes an enormous way to feeling that you can carry on when you know that they are being looked after when you are not there. There are always moments in any relationship that are hard to forget, mine would be when I was pregnant with my second and turned into a psycho, I punched N in the arm I was so angry, we both put this down to raging hormones and decided we would stop at 2! I suppose what I’m trying to say is those moments are often caused by something extraordinary, which is perhaps easier to live with than if they weren’t.
I hope today has been peaceful for you both. Love and hugs to you both.xx

Phil,
Thank you, I hadn’t really thought about it like that, I try very hard to support N but I can’t always know how he is really feeling or what he is actually thinking, I try to offer openings so he can tell me to “go home” or “stay the night” and when I think he doesn’t want to tell me but does really need to (if you know what I mean) I act all strong and capable and encourage him to share it so he doesn’t feel the weight of it on his own. Then when I go, I cry, a lot.
I read your profile, I get the needing to know, when you’re feeling uncertain and the worry is getting to you it can be so hard to get on with anything else. Best wishes and hugs too.xx

Dear Kentish,

I honestly dont know where you find the strength to carry on. I’m so sorry N is having a bad day, I’m praying he rallies after a good sleep. I’m sure its just out of concern for you the staff are mentioning the amount of help youre providing, and who wouldn’t help their loved one as much as possible. I think of you every day, and the struggles you and N are enduring, my heart breaks for you. I am so happy to read when you guys have had a ’quiet day” I’m praying you have many more.

Michaela xx

Kentish

Is there one of the staff who you get on really well with, could you discuss with them what has been said. 

Thanks Chris

You are not a fool and you are not being judged. I am sure you know that N does not want you to stop doing these things for him. However, the staff at the hospice see these terrible times unfolding before their eyes day in and day out - some families arrange for hospice care precisely because they don't want to do the things you are doing so perhaps the doctor just wanted to be sure that you are caring for N's personal needs because you want to and not because you feel obliged. We often say on here 'don't forget to care for yourself' - who cares for the carer and who will pick up the pieces if you crumble? It is part of the hospice staff's job to care for you as well, and perhaps to make sure that when the time comes you feel able to just sit and be peaceful with him. 

I have been in that space a number of times and the one thing I have learnt is that if you do what feels right, you are in a better place in the weeks, months and years after because you have nothing to look back and regret or replay and over-analyse. The staff at the hospice have a great insight into how most people cope with the unbearable and they will undoubtedly have seen people collapse with the strain of grief but you will not be the only partner they have ever come across who coped by doing what feels right. I think I have told you before that I stole my mum from a hospice because my instincts told me that I could care for her better in my own way - others were shocked and the hospice staff were concerned but I have never regretted it for a second. 

Be brave and sure footed x 

I thought that the staff at the hospice "got me" I've said before that I've felt nurses, doctors etc have not understood where I am coming from and that "matter of fact" is my usual go to. A straight answer is very difficult to give with cancer but as near to is better than the unknown.

I wonder if this is taken for "denial", being pragmatic and not showing masses of emotion about changing N and doing the personal care. I just choose to cry at home, in the car, by myself. On the days where N goes to the loo 12-15 times, if i didnt clean him then I wouldn't see him. No sooner is he cleaned than he goes again. I would spend the day sitting in the corridor waiting to go back in, and then for example the last 2 days he hasn't been so I've just sat with him and reassured him when he comes to.

There are so many reasons for staying at the hospice all day, being there for the lucid moments, calling the kids to come at the best times and these outweigh the hours spent sitting, though I've done some sewing, birthday cake icing and lots of crosswords while I'm there. But I think I'm most upset at feeling I have to explain this, justify it. I watch the other wives go home after an hour or visit for a couple of hours in the evenings, they are in their 70's/80's, none of them physically able to do any personal care for their husbands. N and me and our family cannot be grouped with them.

I will just carry on this morning but I don't feel connected there now. Trust is a very fragile thing especially when there's a lot of stress. I felt confident that i was doing what is right for us all and now I don't.

Hoping N has had a restful night.

I had wondered that too Chris, they aren't monitoring food and fluid, no one checks he's restricted it except for him and me, they aren't measuring urine output and he's classed as "independent" regarding turning as he can move himself around the bed and readjusts himself regularly anyway. There is a poo chart to list when and what type/size and as they change him after I've gone and in the mornings they inspect for pressure sores at that point according to the charts at the end of his bed.
I wondered if I have been doing it wrong, not keeping him clean enough or putting enough barrier cream on, and when he's washing/being washed, not doing it the right way.
I don't know, I just know I feel like I am out of place, unsure of what to do and say, whereas before I felt comfortable in my role as his listener, caregiver, wife.

Country boy,  I didn't feel confused or close to breaking point until doubt crept in,  although yesterday was horrible it was bearable and I thought I was coping well enough. Perhaps I'm not. Second guessing myself is a bad place to be, not helpful in anyway and a useless mindset to have right now when N and the kids look to me for strength and support. Now I feel like those staff I looked to for support are doubting me and if they doubt me then am I doing what's right?

N was still very tired today but not sick so I asked him carefully if he wanted me to carry on cleaning him or if he'd rather the staff did it. He was adamant he would rather I do it as a general rule but understood that when the whole bed needing changing this morning and I asked him to bleep the staff to do it as they are much quicker and have the stuff for cleaning the bed too.
A friend came to visit and I offloaded this and asked what she thought, she thought that perhaps my age and willingness to get stuck in had thrown them and they weren't sure where the place for that is. I'm guessing home but that's not an option at the moment.
I don't want to be that "wife" who gets in the way and I suppose that's how I feel too. So I took a cue from the other wives and walked away when the meds came round, the flushes were done and when they changed the bed this morning. It didn't feel right and I probably won't do it again as N couldn't remember if he'd had a flush and asked me to get the nurse to come and do one. (She already had).
Regardless of this, if "this" even exists, I'm probably being over sensitive, N had a better day and both kids spent a couple of hours each with us in between working and their social lives. We played a game of rummy, albeit at a very slow pace for N, if the sodium doesn't improve then neither will his cognitive condition so another adjustment for the kids to make but easier than the horrible vomity situation of yesterday. Got to find that ray of sunshine in these dark skies.....

Edited by member 16 Mar 2019 at 20:09  | Reason: Not specified

Kentish

i think the person who spoke to you would be mortified if they thought they had caused so much stress, my thought is that they were giving you a way out in case you thought you had to do it. I’m pretty sure i wouldnt want to do it, but I can’t be sure unless and until the time comes. i think being in the hospice is meant to be a time for you both to be husband and wife and mum and dad, not nurse and patient, and they maybe thought you felt obliged. How long you stay there is your call i think, our local hospice has family accommodation to help with that situation. When John has been in hospital, I’ve stayed every minute i was allowed unless he needed a break or I did. I do think if this was me i’d have to ask them outright as I would feel uncomfortable. That is not what a hospice is for.

I think they think you need a break, but if so, why not just say so? Mostly they are usually just plain speaking aren't they.   

Bless you, you didn't need this worry on top of all of this. 

Big hugs from me today.

With love

Devonmaid xxxx

Kentish, never doubt for a minute that you are doing the most excellent job of wifeing and mothering.  We each do it in our own way, and your way is right for your family. I hope they aren't judging you, but are badly expressing concern.

You aren't sounding paranoid, but just like me you are sounding tired after months and years of worry.  And we second guess everything we do, wondering if every step has been right.

Peaceful here, sitting with H, who can no longer respond to me.  Glad we came back in to familiar surroundings and staff.  His own room and music playing.

Sending love, and wishes for a better night's sleep.

Teacups

That thin veneeer, oh I know it. I’m living some kind of ”normal” life again at the moment, thanks to the Enza, but I find myself sounding off on social media about things that annoy me (the horrible B word, local politics etc) and I have had to remove myself from some groups because I'm becoming that person, so opinionated! It's a release i know but not really fair. I'm off on my annual jaunt to Portugal this week, a week in the mountains with the childless daughter, who works for Honda (bad news story, made me furious), no food or booze, just fresh juice, yoga, walks in the mountains, fresh air, freezing lake swims, Jacuzzi and like minded people. I tend to come back utterly renewed, 10 Lbs lighter and looking and feeling ten years younger. I booked it six months ago neve thinking i would be able to go, but I am. I will be able (just about) to catch uo from the mountains.

Kentish,

Hoping you had a reasonable night and that N is feeling a bit better today. much love coming your way both.

I wish you could join me in the mountains of Portugal, a healing retreat for the body and soul. Off to oncology today.

with love always

Devonmaid xxx 

In our spirit of keeping things real, I felt that I should post our latest sad news that we lost H today.  At the moment feeling numb, and sad.  But grateful for the time we had, and all those years when we did 'make the most of it', as Kentish's thread is titled.  Grateful too, that the struggle is over, and that he was not in pain.  

Love to all of you.

Teacups, so sorry to hear your news. I have tears in my eyes and hope that you find some strength in having your family close now at this difficult time.

Phil

Feel sure you will receive the much-needed support from your family & friends at this extremely sad and difficult time for you ... the kind of support that you are so generous with when you make your sincere Posts helping others on this worthwhile site. Our thoughts are with you.

So sorry to hear the news.

X

Pete

Oh Teacups

The most dreaded of moments has come and my deepest sympathy goes to you for all that you both have endured and for the journey you will now embark upon without your beloved man. We have discussed how it can be a relief in the immediate aftermath, no more pain and confusion, thank heavens for that. It's over but also, it's over and now you have to endure. Please accept my condolences, I am thinking of you and hoping you can find peace, you did everything you could, you were a wonderful support and an amazing wife. No one could ask for more from their beloved. I hope that time will blunt the edges of what you have been through but that's not for now. My love and heartfelt sympathy go out to you.

With my love across the airwaves, I hope you can feel it

Devonmaid xxxxx