Helen and Alan

[Dibs]

Hi Helen

So glad you had a good nights sleep as it does make all the difference especially when dealing with stressful situations.
Pleased to hear that you have the sitter booked again. Hope that you and Alan have a calm and peaceful day.
Take care love Dibs (Deborah) xxx

 

[janlyn]

hi helen , so pleased you got a good night rest i do hope you have a good day give alan my regards thinking of yo both x

 

[Linda Mc]

Great news Helen

 

[sad nell]

Helen that is great news, and what a bonus someone you know can cope back on Saturday,Does Alan get up during the day or does he prefere to rest in his bed. were you able to switch off or did you have one ear open, i, have often wondered how i would be with a night sitter in the home, bet you feel like a new woman today, hope things are as positive today, all my love to you both pam

 

[Helen33]

Thanks everyone. I did switch off and sleep right through until the alarm went off. It has been a rollercoaster of a day since then though.

The personal carer has been sent off with a flea in her ear because she had no idea how to bed wash Alan and she asked me to hold him standing up so that she could wash his bottom and cream it. It was so distressing to him and then his knees gave in and he collapsed onto the sofa I said I wanted her to report back to her agency and get them to send two people rather than one who are able to do this job and who know what they are doing.

The MacMillan occupational therapist then arrived and she was lovely. She is going to send in a physiotherapist and a dietician and get an air mattress in.

The District Nurse came and set up a box with all the predicted medication that might be needed any time now She will make sure that I get 2 personal carers three times a day and that they are ones that know what they are doing

There was then the most special time when Alan was crying. It made me cry and so we cried together just holding each other. I told him I loved him and he cried again. It was a special time and it did feel like he was saying goodbye to me Then a few moments later he was looking out of the window with a strange look on his face and it made me think of when people say they saw a light or relative or angel and he then smiled several times at whatever it was he was seeing.

The GP came and talked me through possible meds over the weekend and about possible scenarios Alan will have a canula fitted tomorrow so that he can get what he needs when he needs it.

The District Nurse has just phoned to say that I have night sits tonight, tomorrow, Sunday and Tuesday and Wednesday of next week so far The air mattress will come tomorrow and thanks to some of you I'm already prepared for the buzz or humm of the motor

My brain is now in overload so I am going to relax for a while.

Love

 

[sad nell]

Hope you are managing to relax now, what an exhuasting time, Alan should have been provided with two carers from the outset, who know how to roll, it is so exhausting for both parties otherwise as well as not safe for Alan, but glad you now have that in place, Sometimes just holding each other is such a comfort and i hope Alan had a beautifull picture in his mind as he gazed out of the window, picturing you two in each others arms gave me a very warm feeling. love to you both Pam

 

[twinone]

Hi Helen

I dont post often but do read all your posts.- I loved reading about Alan and his fluffy pet and the photos where lovely to look at.

I am pleased you got a good nights sleep which means you can cope with the situation better the day after.

So sorry to read whats happening with you and Alan. This time is so hard to cope with and yet special too.

I was with Steve right up until the end and even though It was so upsetting I am pleased that I was with him - I will never forget him or what happened and still miss him terribly - I think you just learn to live with it.

So sorry you both have to go through this awful time.

Love Janet


Does Alan still look after him fluffy animals?

 

[Winnie Kjaer]

Hello Helen, glad to read you had a good nights sleep you need it to keep up with all the comings and goings during the day as well as caring for Alan. Good to hear you are getting the air mattress I had not understood you did not receive this with the bed, which is quite unsual. Never mind it is on its way now. Also the canula is good that will make life so much easier for you, no fighting to get Alan to take the medication. 3 slots a day is what you need and I would insist there are two together doing the caring at all times, it is very unfair on Alan for one person even to tempt it. It is uncomfortable and very tiring for him. So much easier when two people do it, they should be trained in rolling though as they can hurt Alan if the pull in the wrong places. A lot of domiciliary firms don't use the recovery position but i am sure the hospice care team will. Good to hear you and Alan are having cuddles together keep being as close to him as he will let you, it brings you both comfort I am quite sure. You describe such a lovely but sad picture of Alan. Take care x

 

[gigi]

Dear Helen,

On the practical level..it's really good to hear that you have such sterling support, as things do seem to be moving very quickly.

Only my opinion, but if you feel confident with the practical support you will be more able to share these precious times with Alan which are so important to you both emotionally. These are the moments you will remember, and they are equally as important as the happier memories of more carefree times spent together.

Then a few moments later he was looking out of the window with a strange look on his face and it made me think of when people say they saw a light or relative or angel and he then smiled several times at whatever it was he was seeing.

Helen, I've been privileged to witness this many times in my career. It's helped me to realise that there is more to a human life than the physical body.

Wishing you and Alan another peaceful night. You're both very much in my thoughts.

Love xx

 

[Helen33]

Dear Janet,

Thank you for your message. It held a kind of comfort to know that you have been through something similar with Steve and that you have survived. I feel like there is a vast, empty cavernous space in front of me and that it could swallow me up and so it is so good to know that it doesn't happen.

Does Alan still look after him fluffy animals?

Sadly the effect they once had has gone but I always have two by his side and give them to him when he is more aware of his surroundings. He cried with one of them once and this always reduces me to a wreck.

When Alan is crying it always reminds me of Norrms when he feels the hurt of maybe having to leave his family and not wanting them to hurt. When Alan was crying this afternoon I could practically hear Norrms and knew as close as damn it that is what Alan was wanting to say and I really appreciated it.

Thank you Winnie and Pam

 

[DozyDoris]

Hi Helen, hope this works, it's a Maggie in a box for Alan
lots of love
Jane xx

 

[Helen33]

Dear Jane, Well it did it for me I could adopt immediately. When Alan is able to focus I am going to show Maggie to him.
Thanks. By the way, the picture shows my email address and wonder if you would be able to edit it out. thanks

Love

 

[Grannie G]

Dear Helen

I`m delighted to hear about the additional night sits. It looks as if whoever`s in charge is trying really hard for you and I sincerely hope you`ll end up with nightly sits which will go a long way to prepare you for the day ahead.
Your special times with Alan are so moving. The only consolation is, whether we believe or not, whatever Alan saw when he looked out of the window, pleased him and made him smile.
Love xx

 

[Sam Iam]

Helen,
Hope the carer's are more sucessful for Alan and you.

Hugs for you both xxx

 

[twinone]

Dear Helen

I am pleased that you found my post helpful and if you want to talk or ask any questions I am here when you need.

( I feel like there is a vast, empty cavernous space in front of me and that it could swallow me up and so it is so good to know that it doesn't happen.)

Helen in regard to your quote above - I felt this way for a long time and still do sometimes, its all part of grieving after you get over the shock, but like me, you have a good family and friends to help you through. It takes a while but you gradually start to do more. But this is all in the future and you have enough to cope with now.

I wish I had known about TP as I was on my own and did not know what was happening next and just lurched from one crisis to the next.

I hope you both have a peaceful night.

Love
Janet

 

[Helen33]

Hi Janet, I've often talked with friends and we've wondered how people get on without Talking Point. If you ever feel inclined it would be good if you could share your experience without TP or what it is about TP that would have helped (maybe in the tea room where it is more private). I will completely understand if you wouldn't want to.

I have two things I am longing to do and that is do the garden and see the sea again!!

Love

 

[lesmisralbles]

Dear Helen

I know how you feel XX

Sending all my love XX

Barb X

 

[sue38]

Hi Helen,

I logged on sneakily at work this morning (I know - I'm one of the bosses but I still feel guilty ) and the tone of your posts after a good night's sleep was uplifted.

I have no experience of your particular situation, but it's clear you must take all help offered with both hands; and don't hesitate to ask for more - be that from the professionals or from family/friends. There may be many friends who would jump at the chance to help - to get those special beakers for example - but are too polite/embarrassed/at a loss to offer.

It sounds as though you had a special moment with Alan today (and here I do have some experience). Much of what you're experiencing now may fade, but those special times will live long.

Wishing you another good sleep tonight.

Much love xx

 

[bucko]

Hi Helen,

Just finished reading all the posts and I am so happy you had a good nights sleep last night. Here's hoping that tonight will be a similar good night. The night sitter sounds wonderful.

I am so glad you and Alan are sharing those very special moments but I find it very hard to express what I am feeling as it overwhelms me with sadness to think of what you are facing. I'm finding it hard to say the right words and type, as the tears in my eyes are burning so much. I am sure Alan is getting so much comfort knowing you are so near and that your gentle touch, a kiss and the ability to hold each other means so much to him and you. I do hope if I am ever in your situation, I too can be as strong and courageous as you. Sleep well and enjoy all your peaceful moments.

Love June x

 

[BeckyJan]

Dear Helen:

It seems you and Alan are getting excellent cancer care. I am sure the agency will soon be meeting your expectations - quite rightly you are demanding the right care for Alan.

Those special moments you describe are heart wrenching. Please live and treasure the present and try not to concern yourself about the 'space' ahead of you. Friends will be there for you when you need them.

My thoughts are very much with you both.
Love