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Bereavement

Find bereavement help and support from other Mumsnetters. See also your choices after baby loss.

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Original poster

Waiting for someone to die in a hospice

14 replies

Bartlebum · 30/09/2023 20:58

My husband was told his mum was going to die last week after an internal bleed. She has gone into hospital with liver failure and was awaiting a transplant, but it was unexpected. He rushed to be by her side and say goodbye. They managed to stop the bleed, however the damage was done and the hospital advised they would stop all treatment. The feeding tube and oxygen were removed and all her friends and family came by to say goodbye.

I wish she had been given the peace of a quick death. Since then, she has moved into a hospice and my husband was told she didn't have long. On Wednesday she was so severely distressed that she was heavily sedated and hasn't been conscious since. She hasn't had food or water for one week, and she hasn't moved at all for four days.

The doctors keep saying her passing is imminent. My husband has been by her side for four days thinking, any minute now. How can she survive for so long without any kind of nutrition? It's making me question whether she was ill enough to stop treatment in the first place. I know I shouldn't think like that.

My husband hasn't taken clothes or anything with him and he can't pop home as he's over two hours away. I can't get to him to make sure he's okay as he took our only car and I am caring for our three children and don't want to leave them at this difficult time for them.

I feel that what he must be going through is so traumatizing and emotionally draining, I know it will change him forever. I want to make sure I am there for him when he finally gets back but I don't know what I need to do. I have bought lots of food, cleaned the house, arranged for all the jobs we had on the list to be done, bought him a big bottle of gin...

I wish her death was not so drawn out. How can she still be going ? How much longer will it be? He is sitting there knowing the worst thing ever will happen in a few minutes, but these minutes have dragged on for days. It must be so hard to grieve. She has not quality of life being kept deeply sedated. Animals get treated better than this.

OP posts:

DieDeutschLehrerin · 30/09/2023 21:11

Ah, I'm so sorry, it's so difficult. My father-in-law died in similar circumstances earlier this year, although fortunately he was spared any distress.
Usually the good thing about being in a hospice is that the staff look out for the relatives as well as the patients. They have a lot of information and resources which your husband might find useful.
As far as I understand, the decision to withdraw treatment is usually based on the likelihood of it causing further harm or the patient being in such a bad way that the treatment has a very poor chance of making any difference.
I found the information on the Marie Curie website about end of life and dying really useful and helped point me in a useful direction of understanding what my husband might be going through. My mother-in-law found it useful too.
In the end all you can do is just give them a lot of love and encourage them to seek whatever support they might feel could be useful.
It's very hard all round but the fact that you are concerned with his comfort will make a big difference. Best wishes as you navigate everything.

Ifailed · 30/09/2023 21:23

You have my sympathy. All I can say is that she's not suffering, but on the pathway to dying. She doesn't know that, she's asleep.

Khvdrt · 30/09/2023 21:25

It’s awful waiting not knowing when it will happen. My experience of a hospice is that they did what they could to look after family - food, toiletries, emotional support and that does help make it more bearable

pilates · 30/09/2023 21:28

So sorry you are going through this. Similar happened to my DH with his mum it was very traumatic for everyone. 💐

Original poster

Bartlebum · 30/09/2023 21:32

They are being treated so well in the hospice. On the last day before they found out she should be transferred, the hospital tried to turf her out of her room as they wanted it for someone else! It really made her feel like a burden and that she wasn't dying fast enough for them. That's the last day she was awake and had her sense about her. I was horrified. So yes, this hospice experience sounds wonderful in comparison.

Thank you for your sympathy and understanding. It makes me feel better to know that this isn't unusual, although I feel for you all too.

She has had the death rattle for more than 24 hours.

OP posts:

RipleyAndThePebble · 30/09/2023 21:38

We had a very similar experience with my mum. She had no nutrition for weeks and just kept going and going (stomach cancer). It was very very difficult. We were also told by the hospice that they were going to send her home, they were pretty awful, but luckily she died the next day.

GunboatDiplomacy · 30/09/2023 21:43

If she's being properly sedated in a hospice then she won't be suffering. I've been there myself, and it takes as long as it takes, but hospices are normally much better at looking after relatives than hospitals are.

Original poster

Bartlebum · 30/09/2023 21:45

@RipleyAndThePebble that's awful, I'm sorry..my husband just lost his dad to stomach cancer. It's horrendous. He will have lost both of his parents before he turns 40, both of them too young, very quickly after diagnosis and less than two years apart. I can't imagine how difficult it must be for him.

OP posts:

Pinkflamingopants · 30/09/2023 21:52

So sorry to hear this OP. Has your DH spoken to the staff about getting some clothes for him? I’m sure they have had similar situations and been able to help, they will have some spares/be able to get him some.

Original poster

Bartlebum · 30/09/2023 22:01

@Pinkflamingopants I think he hasn't but I think it's just because he thinks there is no point as she hasn't got long left. He's just messaged saying he hopes he can come home tonight as it surely can't be much longer. I've had multiple messages like that since Wednesday, he really feels like it is imminent (and has done all that time!) he's just living on the cusp.

I expect the moment he does something like sort some clothes he won't need them.

OP posts:

ShipshapeShore · 30/09/2023 22:02

We had the same situation with DHs mum and it was beyond awful. She clung on for a seemingly impossible time after they stopped food and water and every day we prayed it was the last. It was a blessing and a relief when she did pass, which felt so wrong.

Just be there for your DH. He may not want to deal with it immediately and seem ok, just let him know it's ok and you're there. My thoughts and prayers are with you all 💐

Original poster

Bartlebum · 30/09/2023 22:03

@DieDeutschLehrerin you're right about the treatment decision. It makes sense. She was too weak for the operation or the treatment. Conversely she also appears to strong to die.

I had a Marie Curie charity door knocker yesterday. I told him it wasn't a good time. Perhaps he was sent by some force to help! I will head to the website now.

OP posts:

WrongSwanson · 30/09/2023 22:11

My experience of hospice care for a dying relative was that it was wonderful. They really understood how to make it as good as possible for everyone. The uncertainty is exhausting, does he have any other family with him?

mumof2many1943 · 01/10/2023 10:49

No advice except hope it happens soon. My son died last week, he was in a hospice until a week before he died and he wanted to go home to die. It was not good but it was what he wanted. It sounds awful but it was a relief in the end. Sending wishes to you and your family and try to stay strong.

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