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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

Baggs Fri 07-Feb-20 20:24:14

I hope all your plans work out, lucky. If our willing things to work out as best they can for you makes any difference, then know that we are willing it flowers

midgey Fri 07-Feb-20 19:52:39

Thinking of you Luckygirl, hope you can begin to find a little peace soon. flowers

merlotgran Fri 07-Feb-20 19:46:05

It sounds like you have lots of positives to cling to Luckygirl. You have thought carefully about where you want to live. It's not a knee jerk reaction and so long as your own future will be hassle free in terms of transport links, proximity of medical facilities etc., I'd say don't hang about. Being free of money worries and amongst friends will be a huge relief and although there will no doubt be bumps in the road I think your mind is more or less made up so changing it now will be a backward step. It's hard enough to move forward as it is.

I know how you feel about being close to your DH. I wish DD's grave was nearby.

Luckygirl Fri 07-Feb-20 19:33:23

It is difficult - I needed the money to pay for his care - but now that he has died, for various reasons, my income is going to be drastically cut. OH had to leave his partnership at the age of 42 because of ill health, so stopped paying in then. The pension has been frozen now until they sort out how much I will be entitled to but it is likely to be only a third of what was already a small amount - and of course his state pension stops. I cannot afford to live here - that is for sure - so decided to go ahead with trying to sell this place, as I have found somewhere back in the village where we were happiest (and where he is to be buried) and next door to one friend and 5 minutes walk from a host of others - I really feel I need them around me now. And the new place is small and new-build and warm and cheap to run.

If I back out on it now I will not find such an opportunity again. I will be able to visit his grave easily and be amongst a supportive community.

In one sense it is not a decision that I have taken after his death - it was already in progress. I know it will add to the stress, but I really want to go back to where he will be. I have a whole raft of people who keep offering to help me make it happen and are waiting for me to come "home."

DDs are trying to help with everything, but with the photos they wanted to give me the final word - which is fair enough - I guess they just did not realise what it would do to me. I have resurfaced a bit now. I am lucky to have such a lovely family and kind friends, both virtual and in real life.

I know so many have trod this was before me and I thank you for your support.

Iam64 Fri 07-Feb-20 19:04:00

Luckygirl, I'm with Maw, who has as you know, recent experience of bereavement of her much loved husband. Can you just put off moving house until some future not yet identified date.
If my memory is correct, the sale was prompted by the need to raise cash to pay for your husband's care. Can you at least give yourself permission not to worry about the house sale. Don't set a timescale, just cancel the thing and focus on all the other things that come with the loss of your husband xx

Grammaretto Fri 07-Feb-20 18:36:32

Sorry to hear you are so distraught. The time before the funeral is always a bit surreal. I hope you are not alone unless you want to be..
Can't the agent show people around if it's really necessary?
Wishing you peace.flowers

Curlywhirly Fri 07-Feb-20 18:29:52

Oh Luckygirl you have been through so much and also have the added stress of house viewings - no wonder you are tired and feel overwhelmed. You have the love of your daughters and friends to help you get through this stressful time, and make sure you speak to the bereavement counsellor as much as you can, talking really helps. Also, there a many ladies on GN who have sadly also lost their loved ones and I am sure they will help and give you their advice. Take care thanks

lavenderzen Fri 07-Feb-20 18:20:31

Luckgirl sending you love and the strength you need to you and your lovely girls flowers

MawB Fri 07-Feb-20 18:16:39

flowersflowers
You have too much to cope with at the moment Luckygirl.
Can you not postpone any decision on the house for at least 6 months?
It is generally advised not to move or indeed make any major decision for at lest a year after a bereavement.
Could you also delegate some of what you need to do now to your daughters - or at least share this with them?
One DD and SIL took on the job of having the order of service sheets printed after we had all shared our ideas (and I had of course had the final word).
My sisters in law put together two big display boards of photographs of DH’s childhood, our time at university and the early years of our marriage as their contribution to the wake after the requiem mass. I found it therapeutic to keep busy, but was glad of support each step of the way.
There is nothing wrong with crying your eyes out at photographs of happier days, indeed you would be unusual not to, but do try to hold the thought of these happier days, rather than let how things deteriorated get to you.
There is no easy way through the next weeks and months but you can and will come through this.
Trust me - and the rest of us on GN who are on the same journey. flowersflowers

Luckygirl Fri 07-Feb-20 17:58:04

I feel broken just now - DDs have been sending me photos of OH for order of service and there we are happy - all from before he was ill - so many years of it - it destroyed him bit by unrelenting bit and I cannot even remember when or where these happy photos were taken. It is so very sad. He looks so happy and now he is in a fridge, and he has suffered intolerably. It is unbearable, just unbearable.

I am tired too = two viewings on house today and I had to keep up appearances when I just want to sit in a corner and cry.

How do I get through this?

mrshat Fri 07-Feb-20 17:39:45

So sorry to read this news. Sincere condolences and wishing you all strength and comfort flowers

Ginny42 Fri 07-Feb-20 08:21:55

It sounds like a perfect resting place for your husband with beauty all around him now he's at peace. Sending warm wishes to you and your girls at this very sad time. flowers

Coolgran65 Fri 07-Feb-20 00:03:44

So sad. Thinking of you. You've been through such a lot x

cornergran Thu 06-Feb-20 23:11:48

A step at a time and a day or an hour at a time lucky. I’m relieved you found the counsellor helpful, the place you have found for your husband sounds beautiful. No one could be doing more. Take time to care for yourself. Be sure you’re in my thoughts flowers.

dragonfly46 Thu 06-Feb-20 23:02:10

You are still in my thoughts Lucky and willing you the strength to carry you through flowers

52bright Thu 06-Feb-20 22:55:07

Thinking of you Luckygirl and your lovely girls at this sad time. flowers

BlueSky Thu 06-Feb-20 21:38:20

Sounds a lovely peaceful place Luckygirl but as you say so surreal. Glad you've got your DDs for support and practical help. Look after yourself too flowers

Alygran Thu 06-Feb-20 21:31:40

Luckygirl still thinking of you and your girls as you take these steps forward.

Luckygirl Thu 06-Feb-20 21:08:07

I saw a bereavement counsellor today - she was very helpful.

Also went with two DDs to choose the plot where OH will be buried in the lovely village churchyard - surrounded by snowdrops with beautiful views. It felt so surreal to be doing this - but it is in a place he loved and where the two of us used to walk. It was hard to do, and I felt so sad.

We had confirmation of funeral date today and it is helpful to have something to plan - the girls have written lovely tributes. I will design the order of service and get it printed. WE will make it the best we can somehow.

luluaugust Wed 05-Feb-20 18:48:12

Sending condolences flowers

granny'sbuttons Wed 05-Feb-20 17:11:25

When my husband died I went to the surgery to collect the certificate having been told it was ready. My G.P had forgotten to sign it and was on holiday for the week! Luckily she was at home and not away and another really lovely G. P. fetched it for me and brought it to me at home. It was a very worrying afternoon and, as you say, not what you need at this time.

GrannySomerset Wed 05-Feb-20 16:56:06

It is quite extraordinary how officialdom takes no account of the state most people are in when registering a death. It really shouldn’t be made so difficult and an unhelpful GP practice is just the end.

Keep going, Lucky - not that you have much choice. You are fortunate in your daughters who at least want to share the load. Not sure mine would be as helpful.

NfkDumpling Wed 05-Feb-20 14:58:23

So sorry Lucky. (I’ve been away for a couple of weeks and had no internet.)

(((Hugs))) and flowers.

Luckygirl Wed 05-Feb-20 13:57:33

I am going to have a little grumble now! DDs are trying to organise death certificate ready for when funeral director comes here at 4.30.

OH used to be with a small village practice but when he moved into the nursing home he had to join a massive group practice in the city.

I had a call from them yesterday to say the cause of death form has been signed and can be collected today from one of the many surgeries included in the group - surgery A. DDs have duly turned up at surgery A and the form is not there. They have had to trace which surgery it is at via a phone system in which you are generally 29th in the queue! They are racing about the city to unfamiliar surgery of unknown location to collect it and get back to the city and parked and at the registry office by 3 to register his death.

I am so glad of my DDs! - it is just too much on top of a bereavement to have to be railing about trying to sort this all out.

OK - grumble over.

Luckygirl Wed 05-Feb-20 11:36:48

Yes - there were sights and sounds during that final week that I will never erase. They wake me at night. I am desperate that my DDs should not have to go through this with me at my demise.