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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

Bathsheba Sat 01-Feb-20 09:40:02

Keep thinking of you Lucky, and hoping you're holding up. Love and prayers for you both xx flowers

lavenderzen Sat 01-Feb-20 10:48:34

flowers Lucky thinking of you both.

mumofmadboys Sat 01-Feb-20 11:47:39

Thinking of you and DH, Lucky xx

Luckygirl Sat 01-Feb-20 11:47:51

Thank you for the kind messages. They mean a lot to me.

He is still clinging on to life somehow - he has been unconscious for days; now has a line in with morphine etc.

I am cracking a bit today - just trying to think of some happy memories which are somewhat illusive today - he has been ill for so long that this is all that fills my mind.

I have come home for a few hours as I cannot do anything - he is being well cared-for, which is a comfort, and the 3 girls are here and taking turns to be with him.

I am just starting to think about the funeral as I will have to ring the funeral directors in order for him to be moved from the home fairly quickly- and I want to ring the right ones, as I do not want pall bearers in Victorian black garb and top hats etc. I have never had to arrange a funeral before so am a bit at a loss. Any advice out there for me?

I cannot bear this for him and for all of us any longer. DGD's birthday tomorrow and I want this to be a happy occasion somehow.

mumofmadboys Sat 01-Feb-20 11:52:33

I hope he dies peacefully very soon. xx

nanaK54 Sat 01-Feb-20 12:04:34

Luckygirl I continue to hold you and your family in my thoughts
flowers

midgey Sat 01-Feb-20 12:06:43

Thinking of you both, flowers

BlueSky Sat 01-Feb-20 12:12:47

Lucky we had to go through all this with my mum in law quite recently. We too didn't know where to start regarding the funeral etc, just get in touch with a reliable funeral director and leave it in their capable hands. Tell them what your DH and yourself would like and it'll all be done. It was such a relief that they organised everything even booking a place for refreshments afterwards. Thinking of you flowers

paddyanne Sat 01-Feb-20 12:20:09

call your minister or priest and they will talk you through how to get the funeral you and your OH wants.Our minister was lovely and happy to have my Catholic mothers funeral complete with the hymns she grew up with .We had family as pall bearers sons-in -law and friends .I kept it simple as I knew mum hated the idea of burning beautiful wood so a cheap coffin and no brass handles etc .We didn't feel upto speaking at the service so let the minister do it and we spoke to folk afterwards at the hotel "reception" .Scottish funerals tend to be sit down meals so its a steak pie dinner in most cases and a drink on arrival .I didn't do the order of service card things either as mum thought they were naff .That was my third funeral and they were all fairly similar ,tweaked a wee bit music wise and with readings at FIL's and my dads .Give your daughters jobs too ,your personal phone book and they can call everyone who needs to know the time and place .Its not up to you to wait for people who cant make a date its up to them to organise it so they can fit in with your date .I hope it goes as well as these things can .
As we all know grief is different for us all,I although sad when mum died felt a great relief as I had cared for ehr for 12 years .Dont feel guilty if you feel the same .My very best wishes are with you for a peaceful end to his suffering .

Ginny42 Sat 01-Feb-20 12:23:10

Lucky try to rest. The girls are there and he is being cared for. Weep when you need to. It's very hard, but your love will help you through this. We're here to listen. xx

tanith Sat 01-Feb-20 12:23:35

Oh Lucky such a sad time for you, cling on to those happy memories, I found playing songs we’d sang to together really helped.
I went along to the funeral directors I’d picked to go with and went along to speak face to face, they were so respectful and helpful, they gave me an out of hours number to ring and when DH died at home my daughter just rang the number and let them know and they did everything that was necessary arriving late in the evening as directed by us.
I hope your DH dies peacefully soon.

flowers

BBbevan Sat 01-Feb-20 12:53:55

Dear Lucky I hope you are rested and that your DH is peaceful. I would agree with taniths post. I arranged both my parent’s funerals. The funeral directors were marvellous. Just a phone call or a visit to them and they will arrange everything you want.

Daddima Sat 01-Feb-20 12:56:54

My thoughts are with you all.

SueDonim Sat 01-Feb-20 13:14:04

Thinking of you, Luckygirl. Xx

Callistemon Sat 01-Feb-20 17:43:53

Luckygirl I wondered if your DH has at some point written instructions of what he would like at his funeral or had discussed anything with you?

I have been to some funerals in the last year and, although very sad, they are not always mournful, more a celebration of someone's life.
If he was not all religious there are some lovely readings which are appropriate and we have been to humanist funerals where there were just various eulogies and memories, no readings at all.
Most people nowadays choose music which is very appropriate for the person, whether classical or more modern.

Funeral directors will help with good advice and comply with your wishes.

xx

Callistemon Sat 01-Feb-20 17:47:49

Every one I had been to recently has had a printed order of service with photos of the deceased over the years which I think is a lovely reminder of the deceased person as they once were.

GrannyGravy13 Sat 01-Feb-20 18:06:21

Take care Luckyflowers

merlotgran Sat 01-Feb-20 18:20:48

It's awfully hard when they linger on at the end, Luckygirl. We had to stop ourselves from asking the staff at the hospice if they thought DD had much longer as it was beginning to sound as though we couldn't wait. It was just that we were so dogged tired our emotions were shutting down and we couldn't think straight.

It sounds as though they have your DH's medication and sedation spot on. If he is no longer able to drink he can't go on for more than a few days and he will soon be at peace.

The nursing home may be able to recommend a funeral director. I've organised two funerals - both very different and the support and care was exceptional.

We are all thinking of you.

Xander Sat 01-Feb-20 20:15:41

My lovely Dad died recently. Funeral director was great. It is their profession so have to deal with these situations every day. Still managed to make it personal.Found out we could make a visual tribute. I went through photo albums and selected photos of important events in his life and important people in his life like my Mam.(I cried non stop while doing this) Scanned onto computer then onto DVD gave this to funeral director and it was shown onto screen during service and afterwards at family get together. One of the best things I could have done!!!! Photos not seen before and memories revived. (Updated version of the picture board.) You have cared and loved him. Now it is inevitable he is leaving you do not feel any guilt.

Doodle Sat 01-Feb-20 20:22:02

Lucky I am so sorry you and your children are going through this sad time. I would like to comment about you trying to find happy memories but can’t because your DH has been ill for a long time. I know this is nothing like the same situation but my brother died of dementia after many years of not being himself. At first, that was all I could think of after he died was his last few days. Now, when I think of him, I do not remember his last years at all. I think only of the fun and happy times we had together. I hope this will happen for you too.
I hope the end is peaceful my thoughts and prayers with you and your family flowers

Sparklefizz Sat 01-Feb-20 20:28:10

Thinking of you Lucky. xx flowers

sharon103 Sat 01-Feb-20 20:32:13

Thinking of you all. Love and hugs. flowers

kittylester Sat 01-Feb-20 21:34:49

Good post doodle!

I rang a few funeral directors when mum died and just went with the one I liked the sound of on the phone.

I certainly didnt go with the one who kept calling me 'my dear' but the one who I felt 'got' me! He turned out to judge the mood of me and my brothers exactly right.

I hope this is all over for your dh, yourself and your family soon.

Alygran Sat 01-Feb-20 21:36:23

Thinking of you and your girls tonight flowers

annep1 Sat 01-Feb-20 22:01:35

Its a very hard sad time for you Luckygirl .
Keeping you all in my thoughts and prayers.