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OH now on end-of-life care.

(520 Posts)
Luckygirl Fri 24-Jan-20 17:10:07

OH in nursing hone with end-stage PD, and he has been in terrible mental stress with paranoia on top of his total physical helplessness. He shot a temperature yesterday and clearly has some sort of infection - probably chest. I opted for him not to go to hospital, as I know this is what he wants. They are trying (and failing) to get oral antibiotics down, and have scratched all meds non-essential for his comfort . We just want him to go in peace now. But he is intermittently awake and in distress that he cannot articulate. They have all the necessary drugs for palliative care.

I am torn between wanting to keep him and wanting him to just go now so his distress is over. It is a torment

farview Wed 19-Feb-20 10:05:30

Sending you love..?

Nannylovesshopping Wed 19-Feb-20 10:07:01

Thinking of you and your family today?

Nortsat46 Wed 19-Feb-20 10:11:06

Sincerest good wishes and condolences.
I hope today brings you some comfort. ?

nanaK54 Wed 19-Feb-20 10:16:21

Sending kindest thoughts to you and your family flowers

Thorntrees Wed 19-Feb-20 10:17:07

Thinking of you and praying you find strength for today.

MawB Wed 19-Feb-20 10:19:05

My thoughts are with you Luckygirl - be proud of the love and devoted care you gave your dear husband throughout his life and when he most needed right to the end.

flowers “May he rest in peace and rise in glory”

Grandmafrench Wed 19-Feb-20 10:20:18

He’s in the best place and he has you. God bless you. x

JoyBloggs Wed 19-Feb-20 10:20:49

I have followed your long and difficult journey and am thinking of you and your family. I hope the day passes as gently as possible flowers

gillybob Wed 19-Feb-20 10:23:19

My thoughts are with you and your family today Luckygirl . flowers

Luckygirl Wed 19-Feb-20 10:25:47

Thank you so much everyone - just about to set off. Family have done just about everything except the order of service - all I have to do is turn up.

My main worry at this moment is whether my Always pad will stay the course. Keep your fingers crossed. Of such are the important moments of life made.

SueDonim Wed 19-Feb-20 11:40:32

flowers

Cherrytree59 Wed 19-Feb-20 11:43:02

thanks

Carillion01 Wed 19-Feb-20 11:49:06

Could not have said it better than JoyBloggs.
Thinking of you and for your DH...Eternal rest, perpetual light, rest in peace xxx

Jane10 Wed 19-Feb-20 16:41:16

Hope it went OK today. A lot of us were thinking of you.

NfkDumpling Wed 19-Feb-20 17:52:54

I hope all went well Lucky and you’re feeling better. XX

Sark Wed 19-Feb-20 17:58:38

Luckygirl flowers

Lona Wed 19-Feb-20 19:48:00

Lucky flowers
Take care of yourself now, you need peace and rest xx

Luckygirl Wed 19-Feb-20 20:44:02

Well - it is over and done.

Everyone tells me it was a special occasion; but it went past in a blur for me. My lovely 17 year old grandson was by my side throughout and I am very proud of him and grateful for his maturity and kindness.

The service was taken by a good friend of us both and fellow musician of my OH's; the coffin was carried by sons-in-law and a dear friend; a friend played a Bach cello suite as the coffin arrived; my son-in-law read my memories; and the 3 girls each read their own and got through somehow; the choir I run ( and of which OH was a part for so many years) sang two songs; an actor friend read from the Song of Solomon about love; a recording of my DD singing the Pie Jesu from Rutter's Requiem was played at the end. It was a very friendly and personalised occasion. I think we could have done no better.

The burial was harrowing; but all the family were by my side.

Afterwards in the village hall was very very hard - so many people from so many different parts if the country and I really did not feel like speaking to any of them - but I did the best I could. I just wanted to curl up somewhere and howl.

But now I am finally at home on my own and I just have to try and get a grip and carry on.

All your kind thoughts helped to sustain me through the day and I thank you for them. My life now enters a totally new phase and I just have to try and find the strength to make it productive and worthwhile in some way.

Many thanks to all of you.

Septimia Wed 19-Feb-20 20:53:08

Oh, Luckygirl, it sounds the most wonderful, personalised occasion. Very hard for you but, like your time caring for your OH, full of love and thoughtfulness.

Take your time grieving but take any suitable opportunities to make your life worthwhile. I hope to hear, in due course, of some of the new things that you do. X

phoenix Wed 19-Feb-20 20:53:37

Sending love and every good wish to you and your family.

xxx

MawB Wed 19-Feb-20 20:56:52

Luckygirl it sounds perfect - I was confident you would have beautiful music and give your dear husband a “do” to be proud of.
Don’t be surprised when the reaction kicks in.
You will want some time on your own, but friends and family should be getting you out every day perhaps just for a coffee or just keeping you company.
I have little clear recollection of those weeks but I know I was fragile. I saw one or other or all three of the girls each weekend and my friends and neighbours supported me here.
I hope the house sale can be put on the back burner even for a little while to give you a chance to breathe. I know we are all different but I did not even open Paw’s wardrobes or drawers apart for some coats for the Keep Brum outer clothes appeal for warm clothing for the homeless.
Do whatever makes you feel comfortable though, we are all different.
You have made giant steps in the last month - now rest, relax regroup and recover flowers

Kalu Wed 19-Feb-20 20:59:58

You have been in my thoughts today Lucky. Not only in life did you care so lovingly for your DH but it also continued through a beautiful service with so many who loved and thought to highly of him

I am sending you a shed load of strengthening vibes with thoughts of love and admiration for what must have been a heart wrenching day for you.

So many of us here will always be here for you. Whenever you need us, we are listening. ?

Luckygirl Wed 19-Feb-20 21:44:29

Thank you so much.

I am a maelstrom of conflicting feelings this evening - I am so sad that he has gone, but now and again there is a flicker of relief - which makes me feel a bit guilty. But he is out of his pain and misery, and I am no longer carrying that huge responsibility for his well-being; those difficult decisions about his care and medical treatment; the awful things that were torturing his mind and about which I could do nothing; the challenges of his paranoia and the accusations that he fired at me continuously.

It feels awful to have these feelings even for fleeting moments - but they are what they are and I will have to deal with them.

Life is tough sometimes - but today my choir sang "Love Call me Home", which is all about friends carrying you safely over, and I really felt that today from friends both real and virtual.

Jane10 Wed 19-Feb-20 21:52:33

Sounds like you gave him a wonderful farewell Luckygirl. Just the things and people that were important to him. The big turn out was a recognition of how valued he was by so many others.
Talk about him all the time with the girls. He lives on in them and his grandchildren.
I hope you manage a restful sleep and wake refreshed to the next chapter in your life.

merlotgran Wed 19-Feb-20 22:02:44

I've been thinking of you today, Lucky So glad everything went as you hoped. It sounds like a moving and fitting send off.

Look after yourself now because exhaustion will catch up with you. There will be days when you don't want to do anything so take your time. xx