Hi Lorraine,

That "dumping" sounds awful. I guess there is no easy way for them to say "we're giving up". But when you've lived with secret hopes behind the firm realism it's got to be a punch in the solar plexus to hear that the dark future is near.

Some things my friends have done in their own, similar, endgames:

Mike took some time to "write" (by this stage he couldn't hold a pen and could barely talk so it took a while to dictate to Polly) his own eulogy. They had decided that Polly, and their daughter Beth, would want a funeral ceremony and Mike didn't want some stranger to sum up his life. (Determined to have the last word as ever).

He also, with Polly's help, uncovered the secret that the hospice could justify giving him total sedation (making him unconscious) then switch off his breathing support. His greatest fear was a mix of being conscious when his breathing finally failed, or being conscious but totally paralysed, with supported breathing, when his heart muscles finally failed. With a great deal of sharp questioning and pushing he managed to arrange a death that he could cope with.

Geri, finally agreed to move to a bed on her ground floor. (She'd had to crawl upstairs when she could no longer walk up them). Luckily her bathroom was on the ground floor too. She was able to stay at her own home, control her own pain relief, have different groups of friends come to visit and then die in the company of her immediate family. She played Bridge with us the night before she died (pretty badly as it goes....morphine doesn't help your card playing at all!).

Reg (died last week, brain cancer) resisted and resisted going into the hospice. Refused to use a wheelchair. If he wanted fresh air in his last few hospice days they had to push his bed outside. He was a roofer by trade (tiles, lead, felt, slate whatever material), usually working at great height. His hobby/sport was mountain bike riding. The whole incapacity business was a nightmare for him. By the end his motor control was so poor that he was rolling out of bed to the floor without any intention of moving. Jean couldn't lift him back and their house was the wrong type (too small) for a hoist. So he finally had to go into the hospice.

I guess what is coming to me is that: having spent all this time planning and living the best life possible, it may be time to discuss the best death possible.

I think these could be the hardest discussions you'll ever have.

Pain relief will be an issue. Strong painkillers reduce more than sensitivity to pain.

The choices between the convenience of a hospice (for hoists, IV pain relief, easy sluicing of bedpansc etc) and the dignity  and security of home will be difficult.

The kind of line that Jean had to draw (when she'd called paramedics three times in one night to get Reg back onto the bed when he'd fallen out) is possibly better explored and agreed before rather than while it's happening. I know Jean feels she failed Reg in having to give up on his ideas of dying at home. He wasn't in a condition to tell her whether he understood, forgave her, or wanted to spare her those problems and supported her decision, by the time it was happening.

I've got no answers but I've learnt a few of the questions from the too many friends I've lost over the last few years. Where? How much control? How much pain/how much clarity? Who do I want there? How much do I want my carer to have to put up with? What kind of funeral arrangements?

As always the little beasts can creep up with new surprises to spoil whatever plans we make, and any discussion should bear that in mind, but I reckon that, when you have to accept that Death is coming down the street to knock on your door, you've got a bit of time to greet him with dignity and on your own terms. He may still crash through the window earlier and messier than you expected but when you know he's coming you can at least have clean socks on (metaphorically).

Dunno if this of any use. Really feeling for you both. Big hugs from Jan and I.

Russ

Hi Lorraine,

That "dumping" sounds awful. I guess there is no easy way for them to say "we're giving up". But when you've lived with secret hopes behind the firm realism it's got to be a punch in the solar plexus to hear that the dark future is near.

Some things my friends have done in their own, similar, endgames:

Mike took some time to "write" (by this stage he couldn't hold a pen and could barely talk so it took a while to dictate to Polly) his own eulogy. They had decided that Polly, and their daughter Beth, would want a funeral ceremony and Mike didn't want some stranger to sum up his life. (Determined to have the last word as ever).

He also, with Polly's help, uncovered the secret that the hospice could justify giving him total sedation (making him unconscious) then switch off his breathing support. His greatest fear was a mix of being conscious when his breathing finally failed, or being conscious but totally paralysed, with supported breathing, when his heart muscles finally failed. With a great deal of sharp questioning and pushing he managed to arrange a death that he could cope with.

Geri, finally agreed to move to a bed on her ground floor. (She'd had to crawl upstairs when she could no longer walk up them). Luckily her bathroom was on the ground floor too. She was able to stay at her own home, control her own pain relief, have different groups of friends come to visit and then die in the company of her immediate family. She played Bridge with us the night before she died (pretty badly as it goes....morphine doesn't help your card playing at all!).

Reg (died last week, brain cancer) resisted and resisted going into the hospice. Refused to use a wheelchair. If he wanted fresh air in his last few hospice days they had to push his bed outside. He was a roofer by trade (tiles, lead, felt, slate whatever material), usually working at great height. His hobby/sport was mountain bike riding. The whole incapacity business was a nightmare for him. By the end his motor control was so poor that he was rolling out of bed to the floor without any intention of moving. Jean couldn't lift him back and their house was the wrong type (too small) for a hoist. So he finally had to go into the hospice.

I guess what is coming to me is that: having spent all this time planning and living the best life possible, it may be time to discuss the best death possible.

I think these could be the hardest discussions you'll ever have.

Pain relief will be an issue. Strong painkillers reduce more than sensitivity to pain.

The choices between the convenience of a hospice (for hoists, IV pain relief, easy sluicing of bedpansc etc) and the dignity  and security of home will be difficult.

The kind of line that Jean had to draw (when she'd called paramedics three times in one night to get Reg back onto the bed when he'd fallen out) is possibly better explored and agreed before rather than while it's happening. I know Jean feels she failed Reg in having to give up on his ideas of dying at home. He wasn't in a condition to tell her whether he understood, forgave her, or wanted to spare her those problems and supported her decision, by the time it was happening.

I've got no answers but I've learnt a few of the questions from the too many friends I've lost over the last few years. Where? How much control? How much pain/how much clarity? Who do I want there? How much do I want my carer to have to put up with? What kind of funeral arrangements?

As always the little beasts can creep up with new surprises to spoil whatever plans we make, and any discussion should bear that in mind, but I reckon that, when you have to accept that Death is coming down the street to knock on your door, you've got a bit of time to greet him with dignity and on your own terms. He may still crash through the window earlier and messier than you expected but when you know he's coming you can at least have clean socks on (metaphorically).

Dunno if this of any use. Really feeling for you both. Big hugs from Jan and I.

Russ

Just off to bed with a  big mug of milky drink which I hope will knock me out - who knows, it might??  We covered lots of the issues you mentioned with the hospice nurse today.  Didn't need much discussion between us before she arrived because we'd covered most of it at Christmas when the oncologist said 6 rounds of Oxalyplatin hadn't helped.  The writing was well and truly on the wall and in our 2wks at a lakeside motel we talked and talked and talked.

But to watch Ian sign a piece of paper agreeing to "non-resucitation" was pretty hard to do. 

You are certainly right though about greeting Death at the door with dignity and on our terms.  Death is not welcome at all but he can't be refused entry can he??

Night night.

Nope, the door hasn't been built that will keep him (Death) out.

I think I've posted before about Mike. For legal reasons he had to speak the words about making him unconscious then turning off his breathing support (computer assisted speech doesn't count) . It cost enormous effort. As the family and the medical team sat in stunned silence after he'd worked his way through this, he added his last spoken word...."Bye-eeee" with his trademark twinkle in his eye.

So yes, the signing of the DNR papers must have been tough to be with, for both of you. It's another little waymarker you've passed. It doesn't necessarily say anything about how far the journey is, just makes it clear where it ends.

We're a long way from that ourselves, we've got lots of side routes and diversions to follow. I hope we can keep some of Mike's humour and tenacity right to the end. I hope you and Ian can.

Well done for the crying though, that's an important part of coping with it all.

Hope the milky drink was a comfort even if not a sleep provoker.

For what it's worth our thoughts are with you. Big hugs.

Russ 

hi elkay

I have found it difficult to get a balnce lately but it has helped me to read your story so i just wanted to say thank you.

Poor death-it is waiting for us all our lives but it is a testement to our love of life that we wish it away.

elkay  huge hugs to you xx

Hi Lorraine, I'm so very sorry to hear your sad sad news.  We wanted desperately to keep my hubby at home but when the hospice suggested a 24 hour break to try and get his meds right I think we did the right thing, of course he never did come home again, but the hospice made us feel like home from home and we could do almost anything we wanted to.  Looking back I am glad my hubby was in the hospice at the end, we spoke for the last time on the Friday night (of course we did not know that wouldbe the last time) and he died on the Tuesday at midday, I will not tell you what we went through for those last 3-4 days because everyone I'm sure goes through different stages and have different drugs etc., that affect them, but if my hubby had been at home during those last few days myself and my daughter would never of managed, the hospice was at a lost as to how to help him and it wasn't until the Monday evening that they finally were able to calm him down and then he just mainly slept until he passed away.  I'm sure he knew that we were there as he clutched hold of my arm and would not let it go, his eyes opened from time to time but the main thing was he seemed to be at peace at long last and not really aware of what was happening to him, and although it may sound awful I was so relieved as he did not seem to be in pain or anything but because he couldn't tell us what he was feeling I was just so glad that he appeared to be resting and at peace.

I suppose what I'm trying to say is that everyone reacts different, we were never told or warned of what to expect and we were totally shocked and horrified if I am honest, but even when he went into the hospice the reality of what was happening just didnt seem real, it was only 19 days between being told he was ill and terminal to when he died and I just couldnt accept or believe that this was really happening.

Just take each day and deal with it then, try not to dwell on it too much, enjoy every second that you can.  I still cant fully believe that he has gone, and often I come home and just expect him to be there, but Lorraine remember all the good and happy times that you have shared and try to stay strong for yourself.

My thoughts are with you both and I send big hugs to both of you xx