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Original poster

End of life care - just can't cope with this any more

39 replies

PingPongBat · 10/02/2015 09:49

Oh shit. All hell breaking loose at the NH. Sorry this is going to be a long rant. I need to get my thoughts together.

DF rang this a.m. to say that DM has had 'another terrible' night at the NH. Appparently she was so distressed she asked them to ring DF (this isn't the first night she's asked them to do this & she says they always refuse to call him). She says the staff told her they had rung DF at home & he wasn't in, but DF thinks this is a lie as he was actually at home & the phone didn't go. He later went in to see her & said she was 'shaking with rage' as she had rung the bell & it took 15 mins for someone to respond, she asked for pain relief, & after 25 mins they hadn't returned. DM thinks they are turning the bell off 'in the office' when they know it's her ringing & are ignoring her. DF says they think the NH are having 'serious staffing issues' with people leaving, but this was based on DM saying she asked after one staff member and they said 'oh she's left' - but surely this could just mean she'd just left after her shift??! DF's concerned that they never seem to see the same staff twice - I've been in a handful of times & seen the same people, so that's probably because of the shift patterns - she's been there less than a week after all.

So after explaining all this to me at 8.30 this morning, DF said that he needs to speak to the NH & then said "when are you available?". My heart just sank. I told him I couldn't go today as I've got to go to work. What I didn't say was that I've taken lots of time off (compassionate leave) over the last couple of weeks and I don't want to push things too far, but I'm sure my boss would let me go if I asked. But I don't want to ask him, as I just don't want to go and have to deal with this. Dad's sister is there with him now so I'm kind of hoping she will help him. After all that's what she came here to do - to support them. And she's more than willing to do this, she's a wonderful, practical, loving, pragmatic person.

The bottom line is that Mum is desperately unhappy to be where she is, she's waiting to die, she's uncomfortable in one position for more than about an hour, and at night she's in a lot of pain. She thinks no-one understands this properly. She keeps asking about a hospice, which has been brushed aside by various people but without any detailed real explanation why. DF thinks she wants to go home, but she can't unless she has a 24 hour carer there as Dad can't cope. How the hell can any of us make her last days comfortable, when she's apparently in so much pain, and so demanding of everyone? The alternatives are another NH, which will be further away from DF so he won't be able to visit as often & DM will probably be just as unhappy, or 24 hour care at home - no idea whether this is even possible or practical, or a hospice - but I don't even know if this is possible either. I suggested to DF that perhaps the little child inside her just wants us to say "yes you can go home now & it will all be alright".

I feel totally shit about all of this. Totally alone. I'm still sitting at home not wanting to go to work, not wanting to see DM, to or speak to DF or have to deal with any of this. I just want it all to go away.

OP posts:

KikitheKitKat · 23/02/2015 09:18

You sound like a lovely daughter

XLIX · 23/02/2015 00:52

PingPong, sending love and hugs to you. What a gift you gave to both your mum and dad! Your strength helped see them through the most difficult transition in life. I hope you are surrounded by people who love you at this time. Come to the MN community whenever you need some on line support..xx

RandomFriend · 23/02/2015 00:35

PingPong

Your last sentence in the Sunday morning post made me cry as well.

Wishing you strength for the coming week.

DelphiniumBlue · 22/02/2015 22:46

So sorry.
It is good that you were able to be with her at the end - hard for you, but the right thing for her.
Sometimes it can be easier to accept a death if you have actually seen it happen, and you know you have done everything you could to make her passing easier for her. I'm sure it was a comfort to your Dad to have you there, too.
My own experience is that the images of the dying person fade, and you will be able to focus on happier times, though this might not be the case immediately.
Thinking of you x

BIWI · 22/02/2015 22:31

I'm so sorry. But you will, in the weeks, months and years to come, be grateful that you were with her when she died.

She is free now, and free of pain.

Love to you

Ohhelpohnoitsa · 22/02/2015 22:28

This reply has been deleted

Message withdrawn at poster's request.

ImperialBlether · 22/02/2015 20:06

for you and your family.

twentyten · 22/02/2015 19:56

Oh ping pong. Sending you courage to face the week. There's always someone here to listen and hold a hand.

Original poster

PingPongBat · 22/02/2015 19:01

Thank you for all your kind posts.

It's such a strange time, she's gone but there is still so much to do, so many things to sort out, nothing prepares you for that.

Spending a lot of time with dad now, who's terribly lonely but also rubbish at asking for help. He's so appreciative, and we have had some laughs together despite the sadness. He told me with great glee that he's thrown away the washing up brushes that mum insisted on using, that he has always hated! In contrast, he cried when I cleared her dressing table this afternoon, but was pleased I had done it as it was upsetting him to keep seeing her makeup and brushes etc. We replaced her things with lots of photos of the grandchildren.

DH has held the fort at home, despite being very tired (& upset) himself. He's being my quiet support, just getting on with housework & cooking. Now bracing myself for the week ahead.

OP posts:

Theas18 · 22/02/2015 16:49

Ping pong just adding my hugs to this belatedly.

Sleep well pingpongs mum. And pingpongs be kind to yourself. This grief is a weird thing and can do anything to you I reckon.

SantasLittleMonkeyButler · 22/02/2015 15:40

I'm so sorry .

I was present when both of my parents died. Honestly, the image of it does lessen with time, although I can still recall either's last moments if I think about it.

What I'm trying to say is that you never forget, but it doesn't always stay at the forefront of your mind either.

Ebayaholic · 22/02/2015 15:25

I'm in tears for you too. I think you will ultimately be glad you were there, once the shock has faded. Try not to dwell on the experience if you possibly can.

Marshy · 22/02/2015 15:15

Pingpong your last sentence has made me cry. I lost my mum in a similar way nearly 2 years ago now. I wasn't with her when she died as I'd popped home for a shower and something to eat. I was on way back when I got the phone call. I sometimes have distressing images of her last day, but they have lessened.
Be kind to yourself. You did your best.

CiderwithBuda · 22/02/2015 14:51

I'm very sorry for your loss PingPong.

She is not in pain any more.

twentyten · 22/02/2015 13:12

Oh ping pong I am so very sorry for your loss.
Your poor df. Sending you hugs and so glad she us now at peace. You did an amazing job. Take care.

BestIsWest · 22/02/2015 09:44

Pingpong. Thinking of you.

Original poster

PingPongBat · 22/02/2015 09:34

Mum passed away at 8pm on Friday. Dad rang me at about 6pm to say that she was weakening and he thought this was the end. When I got to the NH her breath was quite laboured and rattling. She had a temperature (106) & her blood pressure had dropped again (80/40). She hadn't spoken since Thursday, when she simply said the name of a visitor (one of her greatest friends of 50 years). She hadn't eaten or had any fluids for about 24 hours either, as she'd been virtually unconscious and unable to swallow. GP arrived, we discussed possible treatment & prospects for recovery. GP said she might recover, but she would probably be in a more debilitated state than she was before the infection. Dad confirmed that neither he nor Mum would want her to be blue-lighted anywhere for treatment, or have a driver for antibiotics etc. She already had a DNR on her file & we were as ready as we would ever be for her to go. She had been in such pain, and just wanted to be free of it. GP said she probably had up to 48 hours left.

So Dad & I gave her a kiss, told her we loved her & went back to Mum & Dad's house briefly for some food. Dad went back to the NH as soon as we'd finished, & I followed a little later after clearing up. I arrived about 5 to 8. Mum's breathing was very shallow, with big gaps. Then she took a very small breath, and then just stopped.

I never even considered I would be there when she died. I'm not sure if I'm glad I was there or not. I keep seeing images of her as she died, which I'm finding really distressing. I'm trying to replace them with ones from the past when she was well. I spoke to both my brothers and they were very relieved that she wasn't alone when she died. I have very mixed feelings.

The main thing is that she isn't in pain any more.

Sleep well, Mum. I love you. You were my heroine, my protector, my guiding light, my Mum.

OP posts:

Ohhelpohnoitsa · 20/02/2015 20:40

This reply has been deleted

Message withdrawn at poster's request.

twentyten · 20/02/2015 20:18

Oh pingpong. Thinking of you. Wishing your dm peace. Long distance hand to hold.

Original poster

PingPongBat · 20/02/2015 19:41

I chased up the evening care & Macmillan nurse had forgotten.... v apologetic.

It's probably academic now anyway as mum has today come down with a chest infection. GP thinks she will pass away very soon. She's not in distress and we are ready for her to go. Just waiting now.

Dad & I have had supper together & will sit with her in the NH for a while.

OP posts:

twentyten · 16/02/2015 09:02

Ping pong I am so sorry. It is so hard. Dealing with everyone and your own feelings and needs too. Trust your gut feelings. Think about what makes a difference. Chase up the evening care- but you cannot do it all.

Needmoresleep · 15/02/2015 23:03

]

Thinking of you.

Original poster

PingPongBat · 15/02/2015 22:32

Well there's no sign of the self administration of pain relief, nor the evening carer, but she has had an aromatherapy/hand massage session. Apparently she said she liked how her skin felt afterwards.

To be honest I don't think she's capable of giving herself pain relief any more, she's so sleepy. But I think she could definitely do with the evening support. I went the other night & it was awful, she was crying out in her sleep, getting distressed, night staff rushing around, just awful. I've seen her twice since then during the day, which was calmer. Spent 2 hours with her while she slept one day, then another hour today when she did wake for a bit and told me how much she liked my sweater. She had a few mouthfuls of yoghurt and some raspberries, but faded again quite quickly. Dad keeps telling me to go and see her, saying it's urgent as he thinks she is close to the end.

I'm not sure what we'll do after my aunt has left. Dad will be at a loss without her so I will need to step back in again. DB will stay with him 3 nights a week but he really needs someone with him during the day for moral support. Mum has had my aunt by her side for so many hours in the last week, we just can't replicate that and I'm sad that we can't.

Feeling very conflicted again about how much I should be doing, and how much I want to be doing.

OP posts:

twentyten · 12/02/2015 14:55

So sorry Ping Pong to read what's happening. You must be worn out.The steps being put in place sound positive- lean on the Macmillan nurse-let them do the chasing for you. And look after yourself. Take care.Thinking of you.

whataboutbob · 12/02/2015 14:44

Sounds like good progress PingPong. At the haematology centre where I work they have a complementary therapy team and they offer reflexology, it is very popular even with people you'd think wouldn't be interested. Also the 1:1 nursing sounds excellent

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