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User

Posted 27 Sep 2016 at 22:07

It's very touching to get so many helpful and affectionate replies.

Day by day Tony gets weaker, and there's a real difference mentally now. He sometimes gets muddled or agitated, and can be slow to understand and to find the words he wants. He is aware of this, and is unsure of his ability to take phones messages or check the diary, or count out his pills. I try to be patient and to avoid drawing attention to his failings, but I'm sure he knows what's happening and is sad about it. Perhaps the morphine helps him not to mind too much, but he's quite subdued.

I managed to stay calm for a few days, but right now I am finding this devastating. Sometimes I hardly recognise him as the person he was only a month or two ago, even though he's still the man I love. I have to explain all this to friends and family to prepare them for the change when they meet him. I suppose it's a combination of the cancer itself and the morphine - it scarely matters which, as we can't get away from either.

Marje

User

Posted 27 Sep 2016 at 22:21

Hi Marje

Hang on in there - you really are doing so well. Are you still managing to get a bit of a break? Is there someone who will sit with Tony so you can go for a coffee or get some fresh air? I know it feels harder to leave them at this stage but just a short walk or a coffee with a friend may help a little?

I got to the point where I offered to sort out David's pills for him. At first he was a bit tetchy about my offer but soon afterwards he asked me to do it and I carried on doing them from then on. He also became very quiet and subdued, and a bit muddled at times. I don't know how much is the drugs and how much is the body's response to help the person to 'distance themselves' from what is happening.

Just know that we are all here for you.

Big hugs

Rosy xx

User

Posted 28 Sep 2016 at 02:53

I'm thinking of you too Piglet.

Wishing you peace of mind and strength to continue

********

We can't control the winds - but we can adjust our sails

User

Posted 28 Sep 2016 at 07:17

Thanks, Rosy, it sounds as if what you experienced was quite similar. I do go out for short whiles, especially while he's asleep, and we do have friends who would call in or sit with him, but so far he says, "I don't need a babysitter!" Most mornings I set him up to have his breakfast and then go out to fetch his newspaper. I often extend the walk a bit, as we live in a lovely rural area, and that's a refreshing start to the day.

I'm due to go out today, to a rehearsal of our new (and truly dreadful) village choir, but may not go. Sometimes it does me good, other times I'm just too shaky and unsettled to spend time in a group of people. I need to collect prescriptions, but several people have offered to do this for me. People really do want to help, and I'm ready to ask them when we need it.

Marje

User

Posted 28 Sep 2016 at 08:43

Marie
What you are going through seems so similar to what I went through. I found that after I had given Tim his breakfast I would go out to our local shop just so I had a short time to myself. I also did continue with my lawn bowls as long as the match was a local one and I would get one of our kids or a friend to pop in to see him. He also said he didn't need to be babysat but I needed to know he was being checked on and not alone for too long. Our local hospice was so helpful, they loaned him one of the chairs you mentioned, got him a bed for downstairs and various other aids. I agree with Mo about making sure you try and prevent pressure sores. Tim's last few weeks the hospice arranged for carers to come in two or three times a day, at first we thought we thought we didn't need them but we soon realised we did and were so glad that they had fixed this up for us. Tim spent quite a lot of time sleeping the last few weeks and also seemed to detach himself from what was going on and this also did upset me but as Rosy said it is probably the body helping him distant himself from what was happening, however the hospice nurse made sure that he was always comfortable and pain free.

Do take care of yourself, we are all thinking of you and are here for you.
Linda

User

Posted 28 Sep 2016 at 09:09

Marje
you are going through the toughest of times. The transition from palliative care through to end of life is almost impossible to describe or instantly recognise. Nobody can prepare you for it or tell you how to deal with it but we can just let you know how it was for us.

It's Just little changes that make you aware things are not going to get any better. I am fairly sure that Tony will know this and either show it openly or just sub consciously, if I am honest I think those little moments of confusion or irritation are the things that let you know he is aware but dealing with it. Although as Rosy says maybe the body itself starts to prepare. To me it sounds as though you are doing a truly wonderful job, Rosy makes a great point, sometimes retaining that little bit of independence or control is so important. So Tony may like to try and manage his tablets himself but maybe he will ask you to just check or gradually take over.

In Mick's case it was about being as much in Control of what happened as possible and his ability to choose. That could literally be a small thing like choosing what he wanted to eat and when , or a much bigger thing like if he wanted more treatment or not, for example, he opted not to have any more blood transfusions because they became uncomfortable and just too much effort for him and he didn't feel they were helping any more.

Trying to tell family and friends who were visiting what to expect was so hard, Every time I did it the words just choked up in the back of my mouth. Also communicating to so many people about how things were progressing became a personal struggle for me. I found it very hard to not make it all sound positive and much better than it actually was. I think I was scared I would put them off wanting to visit or that they would not be able to cope with the reality. In truth everyone was fine (at least outwardly and that is what mattered) it was probably more a case of me willing Mick to be Ok and thinking if i said he was not so bad maybe he wouldn't be. Sounds daft now but it wasn't to me at the time.

I was also incredibly fortunate that my lovely step daughter was totally supportive, not just for her Dad but for me too. Karen took on the communication with our less immediate family and some friends which helped me a lot. She is still a little rock for me now.

In fact friends and some family and indeed this forum , were the things that gave me strength and comfort so I hope they all will for you too.

Wish I could give you a great big hug and go for a lovley rural walk with you. You are in my thoughts every day.

all my very best wishes
xxx
Mo

User

Posted 28 Sep 2016 at 14:36

Oh Marje, having gone through this so recently and now coping with the afterwards, I know exactly what you are saying.

Phil was in the hospice for the last 2 weeks and it got harder and harder with visitors as they all wanted to be so positive and obviously things were not good. The final week he limited to me, his son and two close friends, it just exhausted him having to explain.

Nearing the end he gradually withdrew and the medication kept pain under control, it was probably harder for me and his son as one of us was always there. He often got quite tetchy as he didn't want to be in the position he was.

Take care, just do what feel right and take care of yourself as people keep telling me to do!

Glen

xxx

User

Posted 28 Sep 2016 at 14:41

So moving to hear what you are going through. And so impossibly tough - particularly the speed with which everything has changed. Sounds as if you are intuitively doing what's right for you and, therefore, what's right for Tony. You will know that better than anyone. Take care. Thinking of you. Much love Eleanor.

User

Posted 28 Sep 2016 at 22:34

Phew Marje , the first thing I want to say is thank you for your honesty and raw emotion of what you re going through you have been open honest and Frank .
Life is sometimes more difficult than we can put into words and at the moment you are going through such tough and terrible times.
Stay strong to ride the storm we are all here right behind you supporting and listening .
BFN
Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 29 Sep 2016 at 21:11

Originally Posted by: Online Community Member

"we do have friends who would call in or sit with him, but so far he says, "I don't need a babysitter!"

I knew David would hate to be 'babysat' but have to confess to a day I was desperate for a hair cut but didn't feel happy to leave him. I phoned his sister on the sly and asked her to 'pop in' at the time I needed to leave. So when she arrived I was 'surprised' to see her, explained I was just going out but that she could come in and have a cuppa with him. If he guessed he never said so!

User

Posted 03 Oct 2016 at 18:57

I havent been on this site for a while. I was so sorry to hear of Tony's deterioration. I am thinking of you.xx

Max
"You can only play the hand you're dealt"

User

Posted 03 Oct 2016 at 20:37

It is so sad when someone deteriorates suddenly - hang on in there Piglet, stay strong. I am thinking of you both x

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

User

Posted 04 Oct 2016 at 16:57

It's all happening so quickly now: Tony is deteriorating fast, so tomorrow he is moving into the local hospice. He had thought at one time that he'd prefer to stay at home, and we know the hospice service would have provided extra care to support this, but he's now changed his mind, and we are both happy with this decision.

Tony has very little mobility now; he can't bathe or shower, can't really get in and out of the house without a lot of kerfuffle, can't get out of bed until I pull him, can't get in the car ..... practical measures have helped a bit with some of this but it's all a struggle and a worry. His pain is manageable, but he is totally weak and helpless. What they can't help us with is his mental weariness and vagueness, and his increasing detachment from life, which is so painful to witness. In many ways I am missing him already.

So today I have been sorting out the stuff he'll need to take with him, and tomorrow morning an ambulance will take him away for ever from this house where we've been so happy. Both our daughters have managed to clear their diaries and are coming to stay for a few days, which will be a great support. It all seems quite unreal.

The hospice is a lovely place - we have been to visit and we both know he'll be well cared for.

Glen and other women who have been through this will understand when I say I feel I am now experiencing a gradual onset of widowhood, with tomorrow being a big step in the process.

Marje

User

Posted 04 Oct 2016 at 17:07

Hello marje, your post is so heartfelt. I feel so very sad for you both at this time, I hope that the hospice will provide comfort for you both and your daughters will be with you every step of the way. Jayne x

User

Posted 04 Oct 2016 at 17:07

Huge hugs to you. Yes you make complete sense about how you are feeling. So glad your daughters can be there to support you. I think about you each day and send you my very best wishes

Rosy (((Hugs))) xx

User

Posted 04 Oct 2016 at 18:15

Marje, I am sending you the biggest virtual hug possible I can imagine that the move to the hospice has been a heart wrenching decision and something that I have yet to face.
I am wishing you strength to get through the next few weeks , so glad that you will have your daughters around for you.
Stay strong XX
BFN
Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 04 Oct 2016 at 18:29

Marje
So pleased your Daughters can be with you. Your post is full of all the emotions and so thoughtfully worded.
Today I just can't find any words so just sending a really big hug

You are in all our thoughts
xx
Mo

User

Posted 04 Oct 2016 at 18:33

I don't know if this helps at all but I think it makes sense. Tony will get the care he needs and you can focus on just being with him. I have thought this through for myself and though I am thankfully a year or two away from this with a fair wind, I have already decided that when the time comes I will go in a hospice. I do not have a partner but my children are very close and I do not want them to have to deal with all the medical stuff so I have told them of this intention.

If he gets some peace there then he may be able to engage more with you and your daughters, I do hope so. These are difficult times but unerringly they happen as Tony and you experience end of life decisions. I am thinking of you but no words can help at this time.

User

Posted 04 Oct 2016 at 18:40

A hug from me too :-((
Keep strong x

If life gives you lemons , then make lemonade

User

Posted 04 Oct 2016 at 21:37

Photos Marje. Tony may not be at home but he can still see pictures of home and all it has meant in your lives. One of the best things I did when my Mum was dying was to take the photo albums in to the hospital. She was unconscious for most of the time but when she did wake the photos gave her a lot of comfort.

David

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