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So here we are ....

User
Posted 31 July 2016 16:40:27(UTC)
This is my first post in this section of the Forum. Advanced Pca still applies, but we are moving into a new phase now, where active treatment is pretty minimal and palliative care is the name of the game.

Briefly, Tony's cancer is now in his bone marrow, making further chemo inadvisable, and causing anaemia and low platelet count. He has had one trannsfusion, which has helped a bit, and his pain is still quite manageable. We asked for a prognosis, and the onco says that without active tretament, Tony has probably got mo more than six months. He could fade quite gradually, or it could end in a sudden event at any time, possibly caused by internal bleeding.

But just when I was about to ask for a loan of the virtual comfort blanket, we received a comfort blanket in human form: a visit from the palliative care nurse from the local hospice. She was really helpful and reassuring about the support they can offer us from now on. For the first time since diagnosis, we are being helped in a holistic way - as a couple, as a family, as whole people, rather than a man with Pca and his wife (I always felt up to now that I was seen as part of Tony's support system rather than someone who might also need support).

Our nurse reviewed Tony's pain medication and told us what might be needed further on. We talked about the hospice, and their "hospice at home" care which aims to help people die at home if they wish to. She says Tony is now entitled to Attendance Allowance and a blue badge, which she will help us apply for. We will get a "Just in case" kit of emergency(drugs, syringes etc) to keep at home, also a TEP form about what treatments Tony would wish to accept or refuse. All sorts of useful and helpful things were discussed and explained. She will visit us as required - weekly, fortnightly - at home.

Of course some of this discussion was quite emotional. It's easier to react in a normal way when you're at home in your own surroundings, rather than bottling it all up as you try to in a hospital setting. However, we both feel more at ease with the situation now, and less helpless and hopeless.

The next day was our 46th wedding anniversary. In the morning we had some friends round for coffee and a special chocolate cake, followed later by a glass of our home made mead (Tony keeps bees). We sat in the garden in the sun and it was lovely. Then the two of us had a quiet meal out in the evening. So there can still be good times, and we hope for more when our daughters (consecutively) visit us next week.

Marje
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User
Posted 12 October 2016 20:49:18(UTC)

It was so quick. A week after moving into the hospice, my darling Tony has passed away. It was in the early hours of this mornng and I was with him. His death was utterly peaceful and his pain was well controlled right up to the end. The hospice staff were truly amazing, and the care he - and I - received was loving, patient and tender.
I may post more about this later, but it's been a long day. My two daughters are with me now, and we have spent the evening drinking wine, reminiscing, crying and laughing.
Good night, all my forum friends.
Marje

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User
Posted 27 September 2016 22:07:16(UTC)

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

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User
Posted 29 September 2016 21:11:40(UTC)

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!  

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User
Posted 31 July 2016 20:05:03(UTC)
Marje
Here I am perched over the keyboard looking for words to convey my feelings about your post and I seem to be lost for them. Can I just send you a hug instead?

Love
Devonmaid xxxx
Thanked 2 times
User
Posted 31 July 2016 20:24:14(UTC)

My heart goes out to you both. Take comfort from your hospice angel I would be lost without ours. xxx

User
Posted 31 July 2016 20:44:24(UTC)
Piglet

Sorry to hear the situation you are in, this year seems to be more sad news than good, please accept a big virtual hug from a real Christopher Robin.

Thanks Chris
User
Posted 31 July 2016 21:28:09(UTC)

Originally Posted by: Online Community Member
followed later by a glass of our home made mead (Tony keeps bees)

I'm sorry you are here, however, I'll swap you a bottle of your home made mead (yum yum) for a bottle of my home made orange wine. Deal?

User
Posted 31 July 2016 21:32:03(UTC)

I am thinking so much of you. Thank goodness for our wonderful hospice nurses. Until you need one you can't imagine how fantastic they are. Big hugs from me too

Rosy xx

User
Posted 01 August 2016 06:03:22(UTC)
Big hugs Marje. Totally empathise. Glad you are getting good support.
Glen
User
Posted 01 August 2016 06:10:23(UTC)

hi

looks like you have some really nice people helping, hugs from me

 

regards

nidge

run long and prosper

'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
User
Posted 01 August 2016 09:54:51(UTC)

Many thanks for all the hugs and comforting words. As for the orange wine, David ..... well, I'll have to think about that one. A more direct swap might be my rhubarb wine, which is OK but always tastes a bit rhubarby.

I should add: when the medics talk about EOL care, they are referring mainly to the final weeks. I am hoping we are some distance from that, as are many of the posters here, but I feel this is the right place now. I no longer want to place my posts among the success stories and tales of heroic recovery from Pca. It is wonderful that so much can be done now to give many extra years even to men with advanced Pca, but now that we know this is not possible for Tony, I want to concentrate on a realistic acceptance of what lies ahead.

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User
Posted 01 August 2016 10:22:01(UTC)

I so admire your approach to this end stage. Facing the inevitability allows you to focus back on life and squeezing every lovely moment from it as you demonstrate with your celebrations and a quiet meal. Spending time with your daughters will be poignant but important to create some wonderful memories. Good hospice support is the key here and you sound as if you have the best example of it. This is so important as you do not want to spend your time on solving difficult bureaucratic issues when you should be maximising your time with Tony and it sounds as if your hospice care is spot on.

For those of us with advanced cancer this is a phase we have to face however reluctant we may be to do so. I am fortunate not to be there yet but under no illusions that this time will come. I intend to meet it with the same attitude as you have done. I so admire your approach in what is such a difficult period. I will be thinking of you and watching out for your posts. Good luck on this journey and long may it last!

User
Posted 01 August 2016 10:38:46(UTC)

My heart goes out to you. I was in the same place two years ago with my partner. Love your realism as hard as it is to accept. So glad you are getting good hospice care, that is so important. Sending love,

 

Fiona. x

User
Posted 01 August 2016 19:20:48(UTC)
Sending you a big big hug marg. Thinking of you. May you continue to make some more small happy memories along this difficult path
Take care
Lesley xx
User
Posted 01 August 2016 20:19:51(UTC)
Hi Marje
I am so pleased the local hospice have come up trumps in your time of need. They truly are fantastic and as you say it's that holistic approach that really makes a difference.

I whole heartedly admire your decision to move to this section of the forum, along with your outlook on dealing with what is happening in the best way you can. Acceptance but a determination to get the most you can out of every day.

Always around if you ever feel the need for that virtual hug
xx
Mo
User
Posted 16 September 2016 15:29:36(UTC)
Six weeks on.....
And what a change. After a reasonably stable week or two, Tony has deteriorated fast. He can barely walk, just hobbles round with a stick, as he's so weak. He sleeps much of the time, and when he's awake, he sometimes seems confused and dopey. He's very low in spirits, and doesn't get much out of life now.

A couple of months ago he drove the car, read books, did some cooking, looked after his bees, went for short walks, went out for meals or to the pub, etc, but none of that appeals or is possible now. He finds that pub seats etc aren't comfortable and increase his pain. He reads the paper, watches a bit of TV, but doesn't even read novels now. He can't go upstairs, and struggles to get out of bed. I do everything for him now, which he finds painful to accept. He still eats well but has gone off alcohol - choc ices are the favourite treat!

He has just had his third blood transfusion, but we're not sure how much help this will be. A week ago he had a one-off radiotherapy treatment to target the pain, but it hasn't helped much so far. He takes quite a bit of morphine, which of course exacerbates the sleepiness.

This is really such a struggle, seeing him melting away in front of me like this. I am trying to be strong but it's heartbreaking at times. The hospice nurse continues to be a star, helping to co-ordinate Tony's appointments and care. Both our daughters are hoping to visit again soon, which is great.

I know some of you have been through this and that I'm not alone. Can anyone spare the comfort blanket for a while?
User
Posted 16 September 2016 16:09:34(UTC)

Oh Piglet! My heart goes out to you. I don't know who has the comfort blanket at the moment but I'm happy to pull out my rusty knitting needles and run one up for you.

I have no great words of wisdom except to take each day as it comes. Make the very most of the little things, hugs, hand holding (oh I miss those), jokes and comments to store as happy memories. And give him choc ices for breakfast, dinner and tea if he wants them.

My thoughts are very much with you

Big hugs

Rosy xxx 

User
Posted 16 September 2016 16:23:00(UTC)

Piglet, I'm so sad to see your update.

I bet if we all got out our knitting needles your blanket would swathe the whole house to keep you both snug and warm.

Thinking of you and hoping that the visit from your girls will give Tony a bit of a boost


****

We can't control the winds - but we can adjust our sails
User
Posted 16 September 2016 17:03:13(UTC)

Hi Piglet
Sending love and strength your way to see you through. Best wishes
Chris




If life gives you lemons , then make lemonade
User
Posted 16 September 2016 18:22:31(UTC)
Piglet
I am so very sad for you at this most distressing time. It is really painful for you when inside you know that you probably now have limited time together. Every fibre in your body wants to hold your man, comfort him (and in doing so yourself to some degree) you want to magic away any pain and watch him eat anything that might give him a little bit more strength. In Tony's case that might be choc ices, for Mick it was very creamy rice pudding or ice cream of any flavour.

As Rosy has said holding hands with Tony, talking to him even if it is not really talking with him, every moment now is precious. I'm sure having messages read to him, seeing photos of your daughters and family and the looking forward to their visits, will all be of comfort for Tony. I also used to read to Mick, he loved that.

As for your own well being, I think the comfort blanket is on its way to you as I type, probably from Devonmaid who has had much need of it in the last few weeks but thank goodness will now relinquish it to someone who needs it more.
In terms of doing everything for Tony then maybe let him know that right now this is your choice beacuse you love him unconditionally. If it all gets to be too much then please do let the hospice team provide some help they do a wonderful job . I tried to do it all right the way through but I did find eventually that I just needed someone to give me a little break now and then. Thankfully Mick really understood that.

If the blood transfusions keep giving a little extra strength and better quality of life then the medical team will keep offering them.

I can only offer words of support and comfort but I do send you the biggest virtual hug I am capable of and please know that I am thinking of you as always

my very best wishes
xx
Mo
User
Posted 16 September 2016 18:58:43(UTC)
Piglet
So sorry to read your post. It has bought back to me everything I was going through a couple of months ago. I found it so hard watching Tim fading away day by day but the wonderful hospice team helped me through it all. I am sending you the comfort blanket which helped me so much, I had sent it to Devonmaid but she sent it straight back and I have been holding on to it, take strength from it and make the most of every day.
Linda
User
Posted 16 September 2016 19:54:09(UTC)

Hi piglet
I feel very sad to read this I'm not very good with words but I just want you to know you and Tony are in my thoughts and prayers, I hope you are looking after yourself too, you must be looking forward to your daughters visiting soon, ((( big hugs))
Viv 🙏🏼

The only time you should look back is to see how far you have come
User
Posted 16 September 2016 20:00:33(UTC)

To witness that deterioration and feel you cannot do much to abate it is truly difficult. But you must hold on to the fact that Tony will appreciate everything you are doing to make him comfortable, even if he may not always show it. Having too much pain or discomfort to do your favourite things is so difficult but you will find other avenues to create memories in this time ahead. Thinking of you, look after yourself too!

User
Posted 16 September 2016 20:16:54(UTC)
Dear Piglet,
I'm sorry sorry to hear this latest update, there truly are no words to describe my sympathy for you all, you, Tony and your children. I think It's just a day at a time and trying to do your best, no one can ask or expect more. It's right to accept any help offered to free you to spend your time with Tony.

Massive hugs from me
Love Devonmaid xxxxx
User
Posted 16 September 2016 20:52:11(UTC)

Oh Marje, your post made me cry. I don't want to detract from your post and will be doing my own, but I am in a very similar position. Phil has deteriorated rapidly in the last 4 weeks so I am at a very similar stage to you except that Phil is actually in a hospice as he has absolutely no mobility.

It's heartbreaking watching, knowing that time is limited.

Keep strong, and wrap that comfort blanket around you, and do what feels right, that's the advice that I am getting.

 

Big hugs

Glenx

User
Posted 16 September 2016 21:13:01(UTC)

Oh Glen, I'm so sad to hear this. You had hopes of a clinical trial, I think, but presumably that came to nothing (as with Tony). I know how you must be feeling, and my heart goes out to you. I hope you are finding the hospice gives you both the care and support you need.

We have plenty of friends who care and who want to support us, but I don't think anyone can imagine how it feels unless they're in a similar situation. It means a lot to hear from people here who understand.

Big hugs,

Marje

User
Posted 17 September 2016 09:52:46(UTC)
Oh Piglet,
So sad to read your news, it was me that had the blanket it is on its way by first class post. As you say only others who are in the same situation can truly understand .
We are all here for you.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 17 September 2016 14:01:51(UTC)
So very sad to read your post Piglet , I am truly sorry and send you lots of hugs. You will both be on my prayers.

Debbie x
User
Posted 17 September 2016 14:45:53(UTC)
Piglet and Glen
I just want to let you both know that I am thinking of you every day, this is without doubt the hardest and most emotional time. Feelings go from great sorrow to anger, from hope to despair, from calm to fear and sadly from fight to surrender. There is little comfort from spoken words when time seems to stand still but in reality it moves all too quickly.
You have both given your Husbands every bit of love, kindness and support that you can. You have both been there with them and for them and continue to do so.
Whlst they may not be able to express their appreciation of all that you have done and continue to, they feel it and they take huge comfort from it.
Right now you probably don't feel you can take time out for yourselves and I totally understand that, you want to be there and you are almost scared to miss a single moment. There will be time soon enough.

I'm sure I speak as one with all the other Ladies and Men who have been through this agonisingly painful time in telling you how much respect I have for you both and how much I wish you all the strength and fortitude that we were all so blessed with in our hours of need.

All my biggest hugs, a very big lump in my throat and undoubtedly tears that I will shed with you in due course.

xxx
Mo
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User
Posted 17 September 2016 22:55:48(UTC)

I'm so very sorry to read your post Marje - I have been thinking about you a great deal and hoping stupidly that this last stage would somehow not arrive - or at least not arrive so rapidly for you and your husband. There was something about your kind post to me, at the start of this awful journey, that really calmed me. It was so kind of you to take time to help - as you have helped so many people on this forum. I only wish that I could somehow help you but there aren't any words are there.

Do hope that the rest of your time together is pain-free and that the family are able to be there to support you.

Thinking of you and sending love.

Eleanor

 

User
Posted 18 September 2016 09:32:03(UTC)

Oh Marje,

I'm so sorry to read this.

It think it is natural on a forum like this that contributors will feel particularly close to those they consider contemporaries. I have felt that way about you and GlenT and Rosy.

I don't know what to say. I pray that Tony's passing on will be calm and serene for both him and you and all his loved ones. I also hope the loving support of all those that contribute to this forum will help sustain you.

David

User
Posted 18 September 2016 18:14:07(UTC)

Thank you for your kind words, particularly Mo and David. Mo, I think you have hit every nail on the head as to how it is at the moment.

Was just listening to Paul O'Grady and the triple was Chuck Berry, the third song Johnnie B Goode, which was our wedding dance as we are (were) Rock N Roll Dancers. Stupid the things that make you cry.

 

Glen

xx

User
Posted 18 September 2016 20:14:42(UTC)
Quote:



Was just listening to Paul O'Grady and the triple was Chuck Berry, the third song Johnnie B Goode, which was our wedding dance as we are (were) Rock N Roll Dancers. Stupid the things that make you cry.





Glen


xx



Not at all stupid Glen, but then in time you will also come to see that some memories also make you smile or laugh. You enjoyed rock and roll dancing and in my youth I was a Northern Soul Dancer not a great deal of difference. Dancing and music all stem from the same sources.
xxx
Mo
User
Posted 19 September 2016 08:54:38(UTC)
P
Just to say thinking of you both at this difficult time.

Thanks Chris

User
Posted 19 September 2016 12:52:03(UTC)
Piglet and Glen just wanted to let you know that I'm thinking of you both. Jayne x
User
Posted 20 September 2016 06:09:24(UTC)
Glenda and Marje, you're very much in our prayers since I first caught sight of your postings.

God Bless
Chris
User
Posted 25 September 2016 20:56:03(UTC)

Thank you all so much for your support. I was going through a really difficult patch and just needed to cry out.
Things are moving fast here - Tony is terribly weak, and can barely get out of a chair or out of the house now, but we are getting good support, and we both fqeel calmer now that he has accepted his disabled status rather than fighting it.

The OT from the hospice called this advise on various things that will help Tony retain some mobility around the house - grab rails, a sort of hydraulic pillow-raiser, a better walking stick (a Leki hiking stick isn't totally appropriate) etc. We are ordering a personal alarm with a buzzer, and have invested several months' Attendance Allowance in a fancy chair that tips the occupant towards a standing position, as well as offering a comfortable reclining option. This has made a huge difference to Tony's confidence and wellbeing. A visit from our daughter has also cheered us both, and the other daughter is comng next weekend.

Tony is supposed to have a blood test this week, prior to an appointment with the oncologist. I have arranged for the DN to do the blood test at home, but we don't think the hospital visit will be feasible, so we're going to ask for a telephone consultation. Further blood transfusions are also looking less viable, as Tony can barely walk, and can't get in and out of a normal chair. We don't know how long it will be possible for him to stay at home, but we just try to take each day and each stage as it comes.

Tony is sometimes a bit dopey with the morphine, so finds it difficult to read novels or watch complicated TV dramas now, but still enjoys a daily newspaper, and Match of the Day is still within his grasp. A friend is lending us a box set of "Alllo, allo!" which should provide hours of undemanding entertainment for both of us. I do try to keep up my own hobbies and interest, and will have more peace of mind about leaving the house once Tony has the panic alarm.

Since I started this conversation, we have heard Glen's sad news about Phil. I have replied to her recent post in her own thread, and I know she'll be in all our thoughts right now.

Marje

User
Posted 25 September 2016 21:03:40(UTC)
Hi Marje. You are in my thoughts a lot too, I can empathise so much and wish you every strength.
Glen x
User
Posted 26 September 2016 07:22:59(UTC)

Dear Piglet,

I admire your courage (and that of your husband) so much. Glen, and our other ladies, will know how you feel,  but only those who have walked your path, or have that path before them, can truly understand the strain on your emotions and your physical strength.

Enjoy each coming day, and squeeze the life out of it. Enjoy those "Allo allo" moments. I remember them as very very funny, although hopefully most of the innuendos went over our children's heads!

Best Wishes

Sandra


********

We can't control the winds - but we can adjust our sails
User
Posted 26 September 2016 13:22:55(UTC)
Marje
a lovely update, it's also reassuring to hear that you are both getting help and support. OT's are amazing, how they get stuff done as quickly as they do is quite something. One thing to consider is a special inflated insert for Tony's chair, also one for on the bed as they really help prevent pressure spots or sores developing. Mick really liked his because it also provided a warm layer on his back a bit like the comfort blanket for the patient!
Great idea to go for the home consult if you can, the benefits of ongoing blood treatments may now be outweighed by the difficulty of having them.

Great to hear you are also managing to keep up with your own activities, everyone needs a break and a bit of personal time.
If Tony wants to be at home throughout then the OT and others in the hospice or Macmillan teams can provide a whole range of things to make that possible. If I can provide any supportive information, please just message me.

Allo Allo used to be a real favourite, it was such a clever comedy with characters that never failed to make me laugh. I think it was in the same league as Dad's army, Porridge and my all time favourite Rising damp. Mick loved them all but he was also a huge fan of a couple of the revived old shows lke Cold feet and Red Dwarf.

Audio books are also great, even if Tony dozes off listening at least he can go back to the last bit he remembered.

Wishing you all my very best
xx
Mo
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User
Posted 27 September 2016 20:04:16(UTC)
Oh Marje,
I can't offer advice on constructive things like Mo and she has done a brilliant job but what I can offer is a huge virtual cuddle, so from me to you the biggest hug possible.
BFfN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 27 September 2016 21:37:37(UTC)
Oh Marje
I'm so sorry to hear that things are moving in this direction but also happy to hear that you are doing some of your own things as well, I think it must be a sanity saver! You sound like you are coping as well as possible, given the circumstances.

Mo knows very well all the ins and outs of how to manage during this stage, and she is so generous with her support and advice, we are lucky to have her here.

I am thinking of you both, please take care of yourself.

With love
Devonmaid xxx
User
Posted 27 September 2016 22:07:16(UTC)

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

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User
Posted 27 September 2016 22:21:09(UTC)

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

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User
Posted 28 September 2016 02:53:55(UTC)

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 September 2016 07:17:50(UTC)

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

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User
Posted 28 September 2016 08:43:29(UTC)
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
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User
Posted 28 September 2016 09:09:07(UTC)
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
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User
Posted 28 September 2016 14:36:53(UTC)

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 September 2016 14:41:26(UTC)

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 September 2016 22:34:21(UTC)
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 September 2016 21:11:40(UTC)

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!  

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