So here we are ....

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!

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

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

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

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

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

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

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Edited by member 26 Sep 2016 at 07:23  | Reason: Not specified

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