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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

Luckygirl Mon 10-Feb-20 09:27:29

Thank you for your kind message - and its helpful insights and thoughtfulness.

I am sorry you find yourself in a similar situation. It is, as you say, hard to be the patient kind nurse of a wife all of the time - I do know how hard that is. Even in these extreme situations we are all still only human; and I know that I lacked the ability to suddenly turn into a saint, however I might have wished I could.

I send you much love and support in these difficult times for you. I have walked this path and know how very hard it can be. Bu we are all only human; and need to look after ourselves too - so many people told me that over and over again. I am sure it was sound advice.

Calpurnia Sun 09-Feb-20 23:36:25

I am so very sorry you feel so distraught Luckygirl. I just wish words could help you see you really were the kindest of wives and carers for your much loved husband. You know you would not have him back, for even a moment to continue to suffer as he did.

You could have stayed by his side every minute of everyone of his last troubled years and you would still think, imagine you could have done more for him. No one could have loved or cared for and about him as you did.

Your dear husband would never want you to feel so anguished about his death. If the situation was reversed you would never have wanted him to feel so lost and bereft.

Try to remember all you did for him, how you fought endlessly with bureaucracy on his behalf, how you ensured he went to the best nursing home, how he knew you were with him and loved him to the end.

In the depths of his paranoia when he was raging at you please know that was not the real “him” but I do try to understand how upset you feel about this.

What a horrible cement mixer of emotions continually roll through our heads when we face bereavement.

I have followed your thread about your husband from the beginning. I have used your approach to the very difficult situation you faced, so that a I could learn how to cope with it.

Very sadly I face losing my loved husband of fifty three years in the not too distant future. He was diagnosed with terminal cancer thirteen months ago and I am now seeing awful signs of deterioration in his condition.

I am not always the patient kind nurse of a wife. I am his sole carer and I get very tired, upset and distressed caring for him and seeing how he is getting tired. I keep thinking I will berate myself when he dies for not being always happy caring for him every minute of the day.

Please try and be a little kinder to yourself knowing you really made a difference to your husband when he needed it the most. I hope and pray you will find comfort from family and friends - and all of us here who understand a little of how you feel now and wish we could do more to help you.

MissAdventure Sun 09-Feb-20 23:33:12

I would think they're rather thin on the ground, considering this thread is discussing bereavement!

mike28939 Sun 09-Feb-20 23:28:05

Message deleted by Gransnet. Here's a link to our Talk Guidelines.

Callistemon Sun 09-Feb-20 22:21:26

What a lovely post BradfordLass

Luckygirl Sun 09-Feb-20 22:18:44

I cannot begin to tell you how all your supportyive messages help.

BradfordLass73 - your comment about allowing him to die with dignity has lifted my spirits after a truly dreadful day. I have wept and howled and tortured myself all day with thoughts that I did not do enough and made the wrong decisions for him; thoughts that he might still be alive if I had packed him off to hospital. All this even though I know that the right decisions were made. I have tortured myself with the idea that I was not a good enough carer and that I was not patient enough - and on and on it went, round and round in my head.

I did what I said I would never do and called one of my DDs - they have their own grief to deal with and do not need mine. She came round and just spent time with me and helped me to get a bit of perspective.

I know there will be many of you who will have been where I am just now and I know you brave ladies have come out the other side enough to be able to keep going. I take my hat off to you and commend your bravery. I can only hope that I will get there at some point. What true hell this is.

BradfordLass73 Sun 09-Feb-20 20:30:40

When we allow someone we love to die with the dignity they deserve, it is always a terrible and heartbreaking struggle but you are doing all you can.

You are doing the right thing, the kindest thing, the most loving thing for the man you have cared for and who has cared for you.

Give him permission to go in peace. Give yourself permission to let him go, with your utmost love and what has always been your obvious devotion.

"I have run my race and as I breast the tape
Such joyful victory as fills my soul illuminates the future path.
The next adventure waits but with your love’s foundation I shall win through"

Luckygirl Sat 08-Feb-20 22:02:13

I do hope that you are able to get there soon merlot. A woodland cemetery sounds wonderful.

merlotgran Sat 08-Feb-20 19:36:45

I agree with that, Maw. I'm more than happy to take Peggy and go on my own. I'll be able to talk to DD without getting too emotional which I know I will if anyone else is with me.

The trouble is DH feels he is letting me down.

We'll make it soon I'm sure.

MawB Sat 08-Feb-20 19:25:49

Sometimes going together can be more of an ordeal. Paw and I used to get very emotional when we visited our baby son’s grave in Ringwood but I found I could pop in with some flowers more easily on my own
I am lucky that Paw’s grave is a 10 minute walk from the house, either through the village or along a footpath through two fields just down the hill from the church. A nice walk for Hattie, too.

hulahoop Sat 08-Feb-20 19:20:53

Thinking of you luckygirl you have done your best he may be waiting for you to let him go I have experienced this several times bless you both ?

merlotgran Sat 08-Feb-20 19:11:43

DD is buried in a woodland cemetery 45 mins away. That's not far but there's a bit of a trek from the car park and DH is unable to do it at the moment. I'd go on my own but whenever I suggest it he gets upset.

I haven't been since last October as he's been housebound with illness since then. As soon as the weather improves though I'll suggest he stays in the car if he can't manage the walk.

Luckygirl Sat 08-Feb-20 16:28:11

How far away is your DD's grave merlot ? - I do hope you are able to get there sometimes. flowers

GrannySomerset Sat 08-Feb-20 13:42:13

Some very helpful suggestions here but I don’t think any of us know how we will react until we are faced with the situation that Luckygirl is in. You do need to be as kind to yourself as possible, though, Lucky, given the enormous and prolonged strain of recent years.

Will hold you in my thoughts and prayers.

BlueSky Sat 08-Feb-20 12:09:01

I wish DD's grave was nearby Oh Merlot! Thinking of all of you who tragically lost children. flowers

Callistemon Sat 08-Feb-20 11:12:48

Yes, let the estate agent earn his/her fee and take over the viewings for you Luckygirl

Laurely Sat 08-Feb-20 10:39:29

Just a thought: could you go and stay elsewhere for a while, perhaps with a DD, and tell agent to deal with all viewings?

(After my first husband died I had a few days with Anglican nuns - pay what you want, homely food, hot baths, walks, no chit chat, someone entirely outside my usual life to talk things through with, non-compulsory prayers... It was very comforting and healing. It was a retreat from the business and trouble of getting on with things. Wouldn't suit everyone.)

Grammaretto Sat 08-Feb-20 10:14:07

Now I understand Luckygirl You are very brave and sensible to make your move now. I don't believe the move would be any easier if you wait.
However couldn't someone else do the viewings?
x

Ginny42 Sat 08-Feb-20 00:05:55

How lovely that your old friends are waiting for you to return to the village where you had happy times and your husband will be close by. That must give you the impetus you need to press ahead with the sale. Moving to a new home which will be affordable and easier to maintain is a considerable plus. Sending a hug for being so brave. x

cornergran Fri 07-Feb-20 22:17:26

Totally understand your thinking about the move lucky, Being among friends will be so comforting. Sending love and a hug.

Auntieflo Fri 07-Feb-20 21:48:06

Lucky, I am so sorry that you are having to cope with this extra added stress, on top of everything else.
There have been some helpful suggestions made, and made so well.
I can't add anything. Just sending heartfelt love and prayers to you and your girls.

Try and get some healing sleep, take baby steps each day, and listen to your heart.

Iam64 Fri 07-Feb-20 21:42:46

Thanks for your update Luckygirl. The potential sale and move is understandable despite being so soon after your loss

Callistemon Fri 07-Feb-20 21:34:00

Normally the advice is to stay where you are for at least 12 months after bereavement, as Maw says.

However, as you have not been there for long and have found somewhere suitable where you lived previously and were happy, this could be the best move for you.

I hope you can let everyone who is willing to help take some of the burden from you at this difficult time.
flowers

kittylester Fri 07-Feb-20 21:04:25

Only just come back to this thread Lucky. I echo what baggs said and also think merlot makes a lot of sense. brew

Luckygirl Fri 07-Feb-20 20:35:08

Thank you all so much. x