Hello

[Veebee]

Hello Elaine....so glad you're back on the forum to keep in touch.

I've just seen Marmalade's response so must reply to that......since I posted Allan has decided to accept a zimmer and a frame around the toilet. We're waiting for the physio to get in touch re these items. Allan had a good chat with the gp about worries of what will happen in the later stages and she explained openly about what will probably happen but , of course, everybody's decline is different. He said he felt better for talking to her. I'm so pleased we have a good gp.

Will post on your thread Elaine

Love Vee xxx

[Justamo]

Hello Vee

It seems as though Allan has a good relationship with your GP and she sounds very caring. I'm glad he's decided to accept some assistance with a zimmer and frame for the loo. It will help him to hang on to his independence for a bit longer.

After I had some heart surgery the hospital lent me a frame for the bathroom because I had stitches from my chest to the top of my legs and you have no idea what a help the frame was. I was able to look after myself without having to ask for help to get up from the loo. Just a small thing, but it made a huge difference. It was the Occupational Therapist who arranged it all for me and the hospital delivered it and assembled it too, and collected it when I was OK again.

We went to the clinic this afternoon for a regular pre-chemo appointment, and the Nurse Specialist asked Peter how he was. "Absolutely fine", he said. He had evidently forgotten the list of complaints that he'd been reciting all the way to hospital !

You take care of yourself.

Love, Mo

[Veebee]

Hi Mo....I meant the OT not the physio. Don't know why I said that! It's a beautiful day here and hope it's the same for all..and as for Peter saying he's fine, well, this seems to be a man thing. I have to prompt Allan to get him to speak to the professionals and then I feel as if I'm putting words into his mouth but it's only what he's been telling me!

Vee xxxx

Edited May 10, 2017 by Veebee

[raun cesar]

Hi Vee, Going through the thread its good to know of improvements. I hope Allan continues in the same, and its good to take fresh air with cancer less talk for a while to see the other side of life. Wish you positive times ahead.

[Veebee]

Hi raun and thank you for your good wishes

Vee xx

[Elaine123]

Hi there was pleased to read that Allan has accepted the frame etc ....people refuse to accept the aids without realising how much they need them. On the other hand I guess it reinforces that you are unwell and would rather not face you need them. Thinking of you both. Take care

Elaine

X

[Veebee]

Just an update .....Allan is going into the local hospice tomorrow for a few days for symptom management. He's been very down and his mobility is poor despite the zimmer frame but his feet and legs are swollen and heavy. He started an antidepressant but he became very confused and then had a fall in the bedroom. I turned my back to gather up his clothes and towels and he was on the floor. I managed to get him up with help from my neighbour but it knocked him for 6 all that day. The GP took him off them for a week and the confusion has gone. We've had many tears, on and off, because he says his head is "cabbaged" and he's said that he wishes it was over. He's sleeping lots but sits up every few hours for a while. Will let you all know if there's any progression with his mood.

Love Vee xxx

[Veema]

Loads of love Vee...I hope the hospice can sort his symptoms out. Keep an eye on his legs...Nige's started weeping they were that swollen. It's great that he can sleep...Nige couldn't get comfy at all to sleep and it made him very grumpy indeed.

Vx

[Justamo]

So sorry to hear that Vee, but slightly relieved too because it takes some of the responsibility off your shoulders. Poor Alan. Let's hope that the specialist nurses will make him comfortable. Is the hospice fairly close to you ?

Thinking of you.

Love, Mo

[Veebee]

Hi Veema and Mo. .....I'm hoping that the swollen legs and feet will be managed better in the hospice as he has a huge blister on the top of one foot which the DN has put a see through type dressing on but warned us of leakage if it bursts.

The hospice is only about 15-20 minutes drive depending on traffic. It's probably only about 4 miles but accessed by a busy ring road. I went to have a look around it last week and it's a lovely place as far as these places can be. Everyone was welcoming and it was very tranquil with gardens all around being tended by volunteers.

Mo, you're spot on with the lessening of responsibility. For a few days I'll just be visiting but not hands on and I'm looking forward to that. I just hope they can lift his mood somewhat.

Love to both Vee xxxxx

[Dandygal76]

Hey Veebee, a full time dedicated medical resource can really work wonders and I really hope that they get on top of the symptoms and quality of life improves for Alan. I am sure it will and then just enjoy your time with him in a better place and you also in a more relaxed place. Don't forget to look after yourself. We had some giggles with dad at the strangest times and I treasure them now. Much love to you both on this beautiful sunny weekend. x

[Veema]

Hi Vee...hope you're both doing ok and the hospice is working out. Don't feel like you need to post...just be with Allan...but I'm thinking of you.

Vx

[Guest]

Hello Vee,

Have just popped back on to see how everyone is and hope that you and Allan are managing ok. I was pleased to read that Allan had had a chat with the GP about how things would go and that he felt better for it. I think it does help which is why I am always going on about going on hospice courses and getting their support. Just makes everything a little bit less scary. I am really hoping that the hospice have managed to get Allan's symptoms under control and that he is more comfortable and alert. I also hope that you are taking the opportunity for some rest and care. Don't worry about us. Always in my thoughts

M xxxx

[Veebee]

Hi all.....well, he's back home. He couldn't settle at all and seemed to be even more down than before he went in. He stayed for 4 nights and I got a phone call yesterday morning to say he was very tearful and wanted to come home and he was back within the hour. Over the weekend his hands filled with fluid and his fingers were like sausages which was distressing on top of the swollen legs and feet. His hands have gone back to normal after sleeping with them raised on pillows but the feet are still the same. They don't look any different even though the end of the hospital bed is raised. He has developed a blister on the top of one foot which has quickly grown and covers half of his foot. It's begun to leak and the DN has been today and removed the film thingy he put on last week and said to leave it alone unless it splits and then to call them back. My daughter brought some absorbent pads to put under the foot in bed. The Mcmillan nurse is calling this week and she'll take a look. His mobility is now just from bed to commode placed at right angles to the bed. He can't even be bothered to let me help to wash him so today we did it in stages...hands and face this morning...backside washed and creamed at dinnertime and again before bed and clean pyjamas . It's no more than a lick and a promise but it's all he can stand just now. Hospice at home are available and did come a couple of evenings last week before he went to the hospice, but I think I'm a control freak and want to do what I can for him myself. However, on the plus side he's sitting up for a few hours a day and still eating small amounts.

Goodnight all speak soon love Vee xxxx

[Veema]

Vee, it's lovely that you want to do it yourself, but you must take care of yourself too...dont wear yourself out lovely.

There's not much we can say right now...but know that we're with you, virtually holding your hand. Watch his bum...Nige's split despite regular cleaning, creaming and care and it was really uncomfortable. I think Marmalade used some cream on Louis that kept him bum intact...think it was sunflower something or other...have a look on her thread.

Loads of love and strength...

Vx

[Veebee]

Hi Veema.....I'll be ok. I'm a tough old Yorkshire lass and I've worked in care and I want to do this until it gets to a point when 2 people are needed to move him and then my common sense will kick in (hopefully!) and more help will be brought in. I have a deep desire to do everything for him. Has anyone else felt this? I wonder what it will be like at the end and I must be there...I have to be.

Anyway, back to basics as in his backside.....I'm using Cavilon which is what the nurses gave me.

I also have the Medihoney and Proshield plus which they've used too when he had the sore on the base of his spinew which healed up wonderfully. I did send for some of Marmalade's cream though as proceeds go to the hospital. I use it on my legs which get quite dry and I've slapped some on my face but I'm still quite plain looking! Allan has just woken and wants to sit up so I'll leave for now and see if he'll eat something. Love Vee xxx

[Veema]

Of course you want to do things for him and yes, I think most of have felt that way.

Vx

[Guest]

Hi Veebee,

I am right back there with you. I know exactly what you mean about wanting to take care of Allan and be the one who is there for him. Yes, it's exhausting but it is not for ever and something we promised long ago, "to death us do part"... All that said, you can only do your best so try and rest when he does and don't worry about the clock.

I bought some fabulous big 60cm x 60cm pads for the bed, the ones the district nurses had were a bit inferior. This meant that when Louis didn't have the strength to stand any longer I could actually change the bed easily by myself, not that there was much to change once he stopped eating and drinking.

We found it very comforting to just sit and watch TV or for me to read to him or play some music. I tried to reassure him that it was nearly done and that he did not have to keep struggling, there was no unfinished business and that it was living that was difficult, passing would be ok. In the end you know him best and have the best idea about what things are likely to concern him. Quiet reassurance worked for us and of course Louis was a catholic so prayers each evening and his priest visiting gave him confidence. Whatever their views in life many get comfort and courage from the clergy when they are facing the final hurdle.

Sadly the skin, like the lungs and liver and heart etc is an organ and it can fail just like the others and there is little that can be done save apply imitation skin to the lesions, you must not feel bad. All you can do is make sure the GP stays on top of his pain and that the cocktail of drugs keeps him comfortable.

I am sending love,praying for you all and and hoping that you have a comfortable night.

M xxxx

[Elaine123]

Hi Veebee I was so sorry to read how poorly Allan has been. I know exactly where you are coming from wanting to constantly be the one caring for him.....I was exactly the same in fact I think that goes for everyone on the forum. I managed up until two days before and my son and daughter were then involved 24/7. On the night before Pete died a Marie curie nurse came and let us sleep and he was an angel and the care he gave Pete was exemplary , but I felt as though I was letting Pete down when in fact we were too exhausted to provide the care that nurse gave him. You need to rest when Allan does and just let everything round about you grind to a halt. I know now that a lot of the small things I fussed about didn't really matter and could be left undone. I am thinking of you both and will check regularly for your updates. Love and hugs

Elaine

Xx

[Justamo]

Thinking of you Veebee and hope all is as calm as possible.

Much love

Mo

[WhatEvenisaPancreas]

I'm so sorry Alan is so poorly and I hope you find as much peace as possible.

It was very reassuring to read that everyone wants to do all of the caring, I keep pushing for mum to get some help in but she seems a little resistant because she wants to do every thing herself. I think my step dad would benefit though as he's struggling mentally.

Think of you xxx

[Veebee]

Hello everyone and thankyou for your good wishes and concern. This is where we're at ......Allan's still sleeping for about 80% of the time....eating very little, as in maybe a small bowl of soup or porridge per day...and the blister still drains and refills. The physios came yesterday with a turning type piece of equipment to assist getting him onto the commode but he just couldn't be bothered pulling himself up to stand on it and I wanted to tell them to go away. They were very nice girls but I'm getting to the point that I don't want anyone here at all. I sound really ungrateful and I'm really not but we both know he's dying and all the equipment and talking in the world won't change this. Sorry for the rant, folks and let's hope I'm in a better frame of mind when I speak to you again. Thanks for listening.....love Vee xxxx

[Justamo]

Yes, Vee, I know exactly what you mean. You just feel like slapping everybody away, they're just an irritation really. If it's any help, the physios have probably seen this situation a hundred times before and although they want to offer practical help they can readily understand when you would rather deal with it all yourself.

When my Dad was dying he wanted a cigarette. (This was pre No Smoking rules). The nurses had removed his cigarettes and lighter, so I went to ask one of them for his stuff. She put her hands on her hips and wagged a finger at me and said, "He'll never get better if he goes on smoking you know". By the time I got back to him he'd forgotten what he wanted, but I just held a lit cigarette under his nose and it gave him enormous comfort. He said "Thanks", and that was the last thing he said. He died with me holding his hand about 7 hours later. I don't know why I've just written all that, it's completely irrelevant to your thread, but it's about doing things YOUR way.

Please don't be sorry for the rant. We have all shared our stories of life and death with each other so if you can't share a rant we haven't learned anything. Just stay with Allan, try to stay calm and do whatever feels right to you. I'm glad he's at home with you in your own space, that way you don't have to share him with anybody.

With love and prayers

Mo XX

[Veema]

Vee...this is just the time for you to do it your own way...if you don't want people there, just politely ask them to leave...they will understand.

Lots of love

Vx

[Guest]

Hi Vee, you rant away as much as you like. I know exactly what you mean, just let the community nurses or hospice nurse know you don't want the physio and it will stop. This is your time and its not a rehearsal so have courage and follow your intuition - no regrets. You are doing such an amazing job and have great dignity, it must be a comfort to Allan. I send you heartfelt love and prayers for a calm and peaceful night. God Bless Vee xxxx