[AMcGuireParticipant]

Hi everyone.

We're going through the mill just now, John is not doing so well. He's been in the hospital for a couple of weeks, was discharged home much too early then ended up in the local hospice. Last night he was moved to the hospital following seizures at the hospice, he wasn't keen to move but if he stayed at the hospice then he was to sign a "do not resuscitate" form.

Anyhow, I am only too aware of how quickly things can come to an end – I was told during his hospital stay last month that I should "get finances in order" and "prepare for a sudden death". So I got to thinking …. we have 2 young daughters – Erin 10 and Teagan 5. I like the idea of a "memory book" which would allow all Johns friends/family to write a story or two about him that the girls could then treasure forever after he's gone and look back on to remind them of how their daddy was BEFORE he became ill.

I'm wondering whether I should start the memory book sometime soon, or do I wait until he's no longer with us????? Its a difficult line, I don't want to upset any friends or family, but I'm so practically minded that I feel it would help with MY plans if "plan" is really the word?! I am a trained funeral assistant so when the time comes I will "take care" of John myself like I have done for many years now …. this is my plan anyhow.

So I'm really wondering what you honestly think. Is it wrong to start a memory book whilst the person is still with us …. or do I wait?

Thanks for your time.
Sending healing thoughts and love to all
Angelina xx

[RozParticipant]

Hi Angelina,

So sorry about your husband. I lost mine on Christmas Eve. I like your idea of a memory book, for you, your children and family. I know how things are moving for you having been in the same place has you are now, with your husbands condition, only I had to sign the do not form because Michael was confused with infections. I think if you start it now it will help you all get through the days that are coming. Because believe me when the time does come after your husband is not around, things get left, things get really really hard. So if you start it now you have a focus that will help you all when things get bad. Maybe your children can help you with odd bits, they will want to see it progress and not just the finished article.
This is what I think anyway, and I don't think you can upset any other family members because in a way you are showing them how much you care.
I'm in the middle of doing a memorial garden for Michael. I want a bench, a bird table and plants around. Michael used to watch and feed the birds as often as he could in his illness. This some how will keep him near me, I believe, it may sound daft, but I talk to him every day.
I wish you all the best for the book your producing for your family, and hope and pray you have longer than you imagine together with your husband.

All the best for your future.
Roz Bennett

[eveParticipant]

Hi Angelina
I would not know how to advise you,but just had to let you know,my thoughts are with you,I think I would cling on to the fact he would not sign that form,I can see why it is important,to get your life in order,I can remember when Slim was in ITU i left him sleeping,came back 4 hours later he was so upset,he thought because i did not tell him I was going,I had given up on him.Something i would never do.
John needs to believe he is going to get better.a nurse once told me if a patient wants to know anything they will ask,and I believe that to be true.So in my case,no matter what I think or believe does not matter.
My thoughts are with you,and I hope John gets over this bad time
love and best wishers to you Eve

[tinkerbellParticipant]

Hi Angelina,
Sorry to hear that you are all having such a rough time at the minute. When I was diagnosed three and half years ago my MIL had died just six months previously and I know that my daughter really treasures the memory box that we made her. At that time I investigated Winston's wish after watching the Mummy Diaries on TV they have little memory cards that I'd like used at my funeral where you place them in the pews with pens and people who attend can write memories of the person and they can be collected and kept and I hope added to the memory boxes that I've been making for my kids for ages anyway. I've bought two wooden boxes with hinged lids from B&Q and just put things in there that are special and hope that perfume and hopefully hand prints can go in there to. I know that if you haven't seen this programme you can still get it on line and Winston's wish has some good idea's that have helped us as my kids were 5 and 8 when I was diagnosed. Hope that today has been as good a Father's day for you all as possible – take care Pamela x

[TinaParticipant]

Hi Angelina,

I am practically minded too and I started planning with Patrick before he passed away in May. I also collected all my favourite pictures and put them in an album which is now helping me with the story of our life together. You may not have the physical or mental energy when John is no longer with you therefore in my opinion it is a good idea not too wait.

Sending you strength and love

Tina X

[MinParticipant]

Oh Angelina,
What a dreadful hand life has dealt you and John, and all the many other people on here who have a loved one with MM. Its particularly poignant when young children are involved.
They can be very matter of fact and I am sure they will agree with what you plan. They are your future and they are what matters. Go ahead and do it and don't lose any time thinking about it.
My heart goes out to you and any parent in your position. Life is so bloody unfair. I admire your way of dealing with it and sincerely hope it will be some time before you have to publish it to the children.
My daughter bought me a book from Tesco on line of lots of personal photographs made into a bound book for my 60th Birthday. You down load a piece of software and send the photos on line in the order you want and the end result is very professional. I would highly recommend it to anyone as a keepsake that will stand the test of time.
It resembles a quality illustrated book and if you leave some blank spaces you can write on it.
I am sending you hugs ((((((( and hugs))))))))) as I think you and yours need them right now. I have been feeling really low today and Peter too and your post just puts everything into perspective. We have seen out children growing up and that is a blessing.
All my Love
Min

[brochoParticipant]

Dear Angelina I hope John pulls through this rough patch but I think you are wise to begin a memory book now . I used to work with children who had lost a parent and I know how precious a book celebrating someones life is to them If you ask people now you will get lots more positive happy memories ,if you leave it till afterwards grief may make it difficult for others to remember all the good times Have you spoken to Erin and Teagans teachers? Schools have access to some excellent resources and they can also support the children now as well Sending you lots of hugs love Bridget x

[mhnevillParticipant]

Dear Angelina

Just to say I am thinking of you John and the girls at this very difficult time. May you find the strength you need and an assurance that this life isn't all there is. Love never dies and your Memory Book will be ione way of keeping it alive.

Best wishes.

Mavis

[shirleyParticipant]

Hi Angelina,this disease has alot to answer for hey,i'm a mm patient,so i can sympathise with you and your husband,not a very pleasant ordeal to go through hey. But i must say i love the idea of the memory book and i think when the girls are ready to read it they would love and cherish what everyone has written about their dad,i know i would've. And i think i would start on the book now,cuz i think after losing him i would be to upset to write,but thats me,(such a soft touch lol)but honestly i think its wonderful idea,let us know how you get on,take care and stay strong Shirls x x

[tomParticipant]

Dear Angelina

I am sorry to read John is not doing so good, lets hope its still only a small blip in the MM saga.

And the Memory Book trust me Angelina you do what you feel for yourself and your Daughters and am sure the book starting early is not a problem it makes it easier than waiting.

Am sure Family and Friends will understand why you ask them to add something about Steve prior to his MM, but lets just class this as a small blip and he gets back to feeling better.

Much Love and Hugs sent to you all in this trying time

Tom xxxx

[AMcGuireParticipant]

Oh Roz bless you for taking the time to reply.

Your love and devotion to Michael comes through loud and clear, I admire your strength and courage and truly believe he is still with you yet. I don't think you are daft at all for speaking with him every day, I think he'd be quite put out if you pretended he wasn't there! I'm a very spiritual person, have had lots of proof of "afterlife" if you want to call it that. The girls and I are very fond of angels and work with them daily. I too speak to loved ones who are no longer physically here, so I don't think you are daft at all. Sometimes its a smell, a tickle on your cheek, a song on the radio …. all little signs which say "I'm still here you know". I find it comforting.

The memorial garden is a wonderful tribute and everlasting reminder of the joy you both found in the garden with nature free all around you. I wish you well Roz with your plans for the garden, you'll be so proud of your achievement when its all done and you can sit and enjoy it and ofcourse Michael will be sitting with you too, I've no doubt about that.

Sending you love and a bucket of strength and thanking you for your kind words and encouragement, I understand completely what I have to do now.

Angelina xx

[AMcGuireParticipant]

Thank you Eve for your lovely message.

You are right about hanging onto the fact that he didn't sign the "DNR" form – he has told the nursing staff that he wants every treatment possible to keep him here – so that is a HUGE positive, and ofcourse shows he's not quite ready to throw in the towel just yet.

The more I think about the memory box and book the more I feel its right to go ahead. All the lovely messages of support have helped clarify my thoughts.

Thank you so much for helping, and for thinking of us too.

Sending love
Angelina xx

[AMcGuireParticipant]

Pamela, oh my goodness you have given me such inspiration!!

I had a look at the website you suggested – Winstons Wish – heavens I was in floods of tears reading through some of it, but what a wonderful, fantastically brilliant site. I can't thank you enough for sharing this information, I'd never have come across it otherwise. I remember seeing adverts on TV for the Mummy Diaries and thinking "oh I must avoid that" as I'd just break my heart watching it (I'm such a big softie). I saw the links on the Winstons Wish website, so I'll definitely watch it now (when I have the house all to myself and a box of tissues beside me!).

I love your idea of the wooden box and saving up keepsakes from walks and days out, perfume and handprints, wow all such wonderful reminders of better times …. I do hope we get some of these with John and ofcourse I'm now kicking myself that I hadn't thought of this sooner. What an amazing mummy you are, I take my hat off to you, bless you.

I'm so filled with inspiration now and want to get started, thank you thank you so very much Pamela.

Sending love and a huge hug
Angelina xx

[AMcGuireParticipant]

Tina, bless you. Thank you for your reply too.

I think you are right about starting gathering bits and bobs now rather than waiting till later …. I can't imagine life afterwards yet, but I'm sure it will be a jumble and a guddle and time will likely rumble away before I've had the chance to get some memories together and then I'll think its not the right time and not do it.

I like the idea you have of putting together your life story in an album, looking back on the happier times of holidays and Christmas's when life seemed so much simpler. I love looking through old photos too, a flood of smells and sounds come flowing back which lets you relive special moments. This is something the girls both love to do, they've always got the photo albums down from the shelf asking lots of questions which is great for sharing experiences, wee flowers.

Thank you for your kind words Tina, sending that strength and love right back to you also.

Angelina xx

[AMcGuireParticipant]

Ahh Min, bless you. I hope you and Peter are both feeling better today, though please don't go beating yourself up that my situation is worse than your situation because you have grown up children and ours are still little…… its just not the case. Life is terribly unfair yes I agree, though its the hurdles you jump that make you a stronger more able person don't you think? Its hard to see at the time though but afterwards on reflection I personally believe I can see some growth (in myself anyhow and also in the girls). Teagan and Erin are both very sensitive yet understanding wee girls. They have such compassion and empathy for people in wheelchairs and who are physically and/or mentally disabled. They will help anyone given the chance so they have my heart swelling with pride constantly. I don't think they'd be this way if they hadn't experienced their daddy's illness, so in an odd kind of way his illness has been a blessing on their little lives.

Oh I know the photo books you are referring too – aren't they great?! I've had calendars done in the past and have looked at the books but never had them done. What a great idea! Thank you for this suggestion. Everyone has given me such inspiring ideas, I feel something positive is coming out of something that is actually quite negative. So thank you also for your message!

Sending love and healing thoughts
Angelina xx

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