Are we coming to the end?

Sending you a hug x

We do think of you at this hard time and can only wish the best.
Many moons ago I used to suffer with stress eczema and I was given a scalp lotion / liquid to put on it even though it was on my calves. Cleared it up in days. Maybe you could ask.
Chris x

Edited by member 04 Mar 2016 at 08:08  | Reason: Not specified

Stressful times show up in different ways in each of us. Eczema is not nice, I hope the doctor can go you something for it. I find my hair is hopeless when highly stressed, eye bags etc. Outwards signs of inward turmoil.

I like the fact the your OH is keeping positive (or in denial), it's been very noticeable here that once people give up they do go down hill fast. I see no real harm in him thinking this way at the moment. Better to have hope.

Lots of love

Allison xx

Thinking of you, Rosy. Afraid I used the same tactic with Neil once or twice as it was so stressful listening to him complain and I felt so helpless. Sometimes you just have to walk away for while even if just for an hours peace and a cup of tea . Sending love,

Fiona.

Just to let you know I care. I can't give any advice but just pray that things will be better for you both.

Steve x

Rosy, I am so sorry to read your news. If D doesn't want to know how long he has, I assume that there are no plans for him to spend his final days in hospice care and that you will be managing at home? Push for the bed to be ordered and delivered as soon as possible, along with whatever else the hospice staff think will be helpful. It is terrible to suddenly find that the stairs are not possible and have to leave a loved one lying on the sofa for the night because there is no alternative. Also, if you haven't done so already, talk to the hospice staff about financial support that you might be entitled to from the Government - this will help with things like additional carers if you need them but needs to be applied for now as it might take a while for application form to be sorted and processed.

Wonderful news for your daughter xxx

"It's very difficult with someone who doesn't discuss his thoughts/feelings!""

Is there a relative,friend or colleague he might discuss things with, I did not discuss my diagnosis with my wife at first, but I would talk to strangers.

Thinking of you both.

Thanks Chris

I am really sorry that things have gone from bad to worse, I'm not surprised you are feeling angry and confused about the hospital treatment and handling of things either.

The hospice team sound really supportive just as mine were. They really do make a difference.

Lyn is right, the need to push for the help both physical and financial is important now,so it's good to hear that the hospice team are helping you with that. Hopefully they will send someone from their pastoral care team, (usually the Occupational Therapist) to come and talk through all the things David might need to make him as comfortable as possible at home.

They are usually very good at fighting your corner to get a proper care package.

Talking about what lies ahead is not something everyone can or wants to do. Initially I though I was fortunate that Mick did, but sometimes in hindsight I worry about how much that must have hurt him just to make things easier for me.

I think of you often and wish you strength and as much time together as you can possibly get.

All my very best wishes and a massive virtual hug

Xxx

Mo

Rosy,
My thoughts go out to you. Hard times, when communication is so hard for David. Not sure what words are right, if any. I feel a bit of an imposter,as we don't know each other, yet we have this in common. I've read your postings and I just wanted to say you are both in my thoughts. We have a few friends with illness, my hubby included, hard times for many of us. The internet has allowed this support facility to widen, and our thoughts, feelings and fears to be shared.

If you can, try to take care of yourself.
Leila x

I'm so sorry, but not that surprised, to read your latest update. I can't believe I missed your earlier post re stillbestrol but I guess this is academic now. I'm pleased to hear that you have hospice support, I really do think they do the personal touch much better than a hospital and you do need them now. If no further treatment is forthcoming then I think a few weeks is about right, but you really never know.

On the subject of stillbestrol, my husband has been on this for 2.5 years and has done brilliantly really, he shouldn't have done well, given his diagnosis but he has. His only bad side effect was boobs, but that's a small price to pay. It's an old form of HT, I would say I have always wondered if it's the aspirin you take with it that's the real wonder drug.

Rosy, the others here have told it like it is, no one knows what to say, but we do try hard to support each other through these difficult times. This is a really difficult time for you both, no question about it. Please know that we are thinking of you and hoping for the best.

With lots of love

Devonmaid xxxx

Hello Rosy - like the others who have written to you I am so sorry to hear the news - I am thinking of you and do share something in that my other half does not open up at all and will not discuss his feelings - so frustrating but you will know all about that I guess !  Anyway, enough of me - thank goodness for good friends and will close now wishing you well - with all good wishes and much love xx

Rosy, regarding the comment about whether he is depressed. In my work i often say that depression is when someone is in a deep dark hole but can't really identify a reason or cause. In D's case, there is a very obvious reason for feeling very sad and frightened. So not depressed perhaps; sad, grieving, fearful might be better words?

Welcome to the forum JackieJones and Linda

First things first, never feel the need to apologise for posting on here. I had many times when Mick was in hospital and then the hospice when I would come home (after a whole day of being with him) to a kind of emptiness I had never experienced before. This forum kept me going in a way that family and friends could not quite do, they were all there for me but it was that missing understanding, the people on here who could be empathetic without needing to feel sympathetic the people who quite simply "just got it" the ones who were here with me. So anytime you feel the need you just pour it all out, venting really does help. One thing my wonderful step daughter did for me was to be the communicator with a lot of my family and friends, Whenever there was news or information that she felt needed to be shared she would handle it. I think she knew that me saying the same thing to 15 or 20 people was just too much. I also have a group of close friends who all live overseas I would keep them informed every week or so through a secure closed group on e mail. I often read their responses to Mick as he loved keepng in touch with them all.

I also know how valuable it is when a friend pitches up for a chat and brings cake or flowers or anything. In the absence of that there will always be virtual hugs from the people here.

By the time you read this you should have had your OT visit, hopefully you will now have a load of things that should make everything more comfortable for David.

I know the bathroom door conversation seems like a minor thing but it is a start, I hope I do not sound patronising if I say, please try and get him to use a walking stick or similar, they really help in balance and as a thing to lean on for a little more leverage. Any fall at this stage can be a major issue. When Mick was still able to walk he actually had two, on bad days once he was up and moving he would deposit the second one by his chair and at bedtime I would take it and put it with the one by his bedside.

I think of you often and if I have a G&T later I will imagine you having one too.

All my very best wishes

xxx

Mo

Please never feel that you are posting too much sometimes in life we all need help it doesn't matter how or where we get that help. We are all here in different ways to help support you. On the old forum there was a how many people had read your post section and I was always amazed at how many read my posts this is something I would like to see reintroduced.

When the chips are down some in fact most people don't know what to say I get that and I am sure if they realised that just saying Hi Thinking of You is enough, that can just be what we need .

Just loved your he said , I said with D I can't tell you how many times I have thought this is it ,this is the time that T is going to open up and talk and then he says something so practicle that I am just left dumbfounded.

I often think the old adage that women are from Venus and Men are from Mars is so true, give a man a problem and he looks for an answer to solve it , give a woman a problem and she talks about it and talks about it, and talks about it😌.

The trouble is us lady's always hope , want and expect our men to suddenly turn into women and want to start talking, some do but an awful lot don't . It seems that like you an me have got ones that don't. I am with you thow Rosy I will never give up hope.

Love Julie. X

BFN

Julie X

I'm hoping the hospice staff will be able to talk to him and get him to open up a bit, when we had a bad do a couple of years back our local hospice staff talked very openly on a one to one basis with J. I'm sure it helped him to be more open with me.

I would join you in a G&T tonight as we've had some bad news about my brother but decided to keep to the green tea on the bass that I'd never have just the one. Anyway drinking alone is never good, my OH doesn't drink these days.

We are all here to support you, I'm so glad you can post here, I think it must be so difficult if you can't vent somewhere. I keep my thread up to date, partly as a means of recording the passage of the disease for us, even if no one reads it, I'm recording things that matter to me.

Cheers Rosy

Xxx

Well today I feel like I've been run over by a steam roller.

D was quite poorly yesterday and we learned that his Hb was back down to 7.9 and his platelets are very low too. Today I couldn't get him up for his appointment at the hospice. He just sat on the edge of the bed falling asleep. I called the hospice and they sent the doctor to us instead - what a wonderful service.

He had a transfusion booked for tomorrow and so needed a cross match today at a hospital 45 minutes drive away. The doctor tried very tactfully to persuade him that he wasn't well enough to travel there and that perhaps his symptoms were related to disease progression. He wasn't hearing her and insisted he wanted the blood. He then fell asleep again. On her advice when he woke later I told him that if he wanted the blood we would have to go by ambulance to A&E. He fell asleep again.

He slept all day and then at 5pm insisted on coming downstairs which was very precarious! He then slept on the sofa all evening till my daughter and I struggled to get him back up to bed. I have never seen anyone so breathless - it was awful. Tomorrow I am ordering the bed for downstairs and he will have to stay upstairs until it arrives.

He has eaten nothing, not even an Ensure drink. He has barely spoken (he's been asleep) but when he has it has often been quite incoherent. The phone hasn't stopped ringing - the GP, the hospital, the pharmacist etc etc. Oh and someone who wanted to fix the extra bannister rail but I put him off as I think it's too late now.

We now have a DNR form signed and at hand and a pack of end of life drugs here. The doctor thought maybe a couple of weeks but I wonder if he'll make that long as he seems to have deteriorated so rapidly today. Although I knew it was happening it's still come as a real shock.

I am so grateful for all the kind thoughts - it helps so much

Rosy

There is something amazing about the human body. As the end draws near, the body knows it no longer needs to eat or drink and stops sending those messages to the brain. In response, the brain begins to produce a natural pain killer / relaxant. Sometimes there is a very bright phase, even when someone has slept for days and stopped communicating, they might become very aware and chat, see visitors, etc. but more of the time they sleep. Every time I have been in your situation I have noticed certain things - staring at something I can't see or at a fixed point, fingers constantly picking at the bedding or clothing, things like that. The most distressing thing is when the person suddenly seems desperately thirsty but refuses to drink - I remember sobbing over my mum because she was licking her lips all the time or opening her mouth like she really needed water but then closing her lips firmly as soon as I tried to lift a cup or sponge to her. The nurses reassured me that these behaviours are unconscious reflexes and the person isn't feeling thirst.

I don't know why I am telling you this, you are a nurse! Just to say, I suppose, that I remember every moment and I am thinking of you x

Sadly David passed away just before 4 am. He became increasingly breathless and distressed so we had to call an ambulance and he died shortly after arriving at the hospital.

We will miss him so much

Rosy