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

[PingPongBat]

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.

[Quangle]

oh pingpong I'm so sorry. I have absolutely no experience at all of this but just wanted to offer a virtual handhold and a bump for more useful posters. This is so hard for you.

[Needmoresleep]

Your poor mother.

Pain, fear, being away from home. She has it all.

How long do you think she has left. Do you have a MacMillan nurse or similar (GP?) who might be able to suggest alternatives? My assumption is that a hospice will have more experience of handling end of life issues and so may be a better option. If there is something suitable could you sit on their doorstep and weep? Is the end so close that you simply move her home and bring someone in for 24 hours? Even if the care was less good she might be happier.

I was very lucky. Just as we were getting to this stage with my dad and I was making arrangement to attend the visit by the District Nurse, he had a bleed in his brain and died in his sleep. He had hated being in hospital and really wanted to die at home. My mum had stayed up late to watch a football match on TV so she could tell him about it next day.

If there are no alternatives I assume you need to sit your father down and explain why this is the way it needs to be. Not much about old age is nice. He must be feeling awful. Bereaved, lonely, guilty. Poor man. Poor you.

[whataboutbob]

Reading back on a previous post it seems your mum has CHC awarded. Would it be possible for her to go home and the funding allocated to carers at home? This is likely to be more expensive than a nursing home but it might be possible for family members to pay top up fees. The people to ask about this are the CHC team at your local CCG- google it for the address if you don't already have it. I relaise of course this is easier said than done and would require a lot of input from you but at least maybe you would have peace of mind she is where she wants to be? (although she may well still be miserable!).

[PurpleWithRed]

If she is end of life why is the hospice being brushed aside and by whom? Sorry, haven't read your previous threads, NH can be fantastic but they are often not able to offer focussed nursing care to individual patients. What is her prognosis - days? months?

[whataboutbob]

Sorry PingPong didn't really want to add to your burden by suggesting you take on more, but that is how it could read. None of this is easy.
Hospices usually have a criterion of a prognosis of 2 weeks or less before they take someone, but might bend this a little depending on circumstances.

[PingPongBat]

Just got home, thanks for the replies. Work colleagues are being incredibly supportive, and my job providing me with a distraction from all of this. Walked in the door and felt flat this evening though, knowing I have to deal with it.

Yes, she does have CHC awarded. We were told by the consultant haematologist a couple of weeks ago that she had about 3 months to live. The MacMillan nurse said that they consider someone has weeks left if they deteriorate over the course of a week, and months if they deteriorate over a month, IYSIM. It's not clear to me how she is doing really. They aren't taking blood tests so we don't know what state her blood count is in any more. I’m sure she is frightened, especially at night when she has no visitors, hence the insistence on phoning DF when she’s unhappy.

I told DF this morning to ring the MacMillan nurse at the hospital, who arranged DM’s discharge. She said to ring if there were problems. Although she won't be able to change anything at the NH, she might point us in another direction. I hope he’s done that. The local MacMillan nurse who visited them at home, before she was admitted to hospital 3 weeks ago, had talked to Dad about how hospice referrals work, but he’s forgotten what she said. She said that they don’t offer respite any more – which I found really surprising – and that the way referrals work was changing in our area. I thought respite was one of the main reasons for the existence of hospices? I had said to DF that he should ask the GP (who went to see DM yesterday) about hospice care, but again they were concentrating on increasing her pain medication before doing anything else & DF said it wasn't really discussed in any detail. Which may mean he forgot to mention it.

NMS I think it would be easier for everyone if DM passed away now. It’s just a horrible, horrible thing to even think or say out loud. Dad has told me he’s just waiting for her to die. We all are.

[GraysAnalogy]

Really sorry you're in this situation.

I know you've somewhat answered this, but is there anyway she can go home? If she only has 3 months left then if there's anyway she can be cared for at home then that may be the best thing for her. She can still have access to pain relief and everything she needs. It will be taxing on your father, no doubt about that, but is this any better? Especially for your mum. And care packages can be put into place. Day staff + sleep ins. It's hard, it's soul destroying, but her last days being even unable to ring your father just doesn't sound right.

The thing with nursing homes is there are far too many people with complex needs and too few staff. People are poorly trained to deal with things. Many are full of people with dementia and the conditions related to it which means because your mother is 'of sound mind' she might get left to the wayside.

I don't mean to sound harsh here, but you need to tell your DF to get it together and you may need to help him. I know it's hard, I know it's stressful, but this is the end of her life and she deserves better. You end up putting a front on just for them, hardening yourself and being strong for them. and then when they're gone it all crumbles and thats the time you have to think about yourself.

Thinking about you all. I hope something is resolved that makes all your lives easier

[Needmoresleep]

Ping Pong I found you first post very sad. There is no easy solution, yet you and your dad want to do your best for your mum.

Just from what you have posted it sounds as if it has become too much for your dad. I have no medical background as all but he sounds as if he is so overwhelmed that he can't retain much at all. Can you take (yet another) day off and take over from him in terms of arrangements and options. Less draining perhaps to do it in one go reather than have your mum call him and him call you.

I hope the evening is not as bad as you fear.

[PingPongBat]

Grays you are so right about nursing homes & this is one of the things we need to get across to mum & dad, that things are not going to be perfect, she can’t expect 5* service & 100% instant response to pressing the call bell etc. Their expectations are sky high, and I genuinely believe the NH are doing what they can, with the resources they have. They repositioned her 7 times during 2 hours the other night – so I don’t think anyone can accuse them of not trying. Mum struggles with communication because she’s almost completely deaf, & many of the staff have heavy accents which makes it even harder for her. So misunderstandings are constantly happening. She now has a sign next to her bed which explains how deaf she is, and I think she will need to get them to write things down too.

She can’t go home, it would just destroy dad. He’s just too tired & vulnerable emotionally. Even with a care package he would find it incredibly distressing which would upset mum too. We did have a bit of a ‘get it together’ conversation & he went off to ring the MacMillan discharge nurse at the hospital, who then rang round various people including (I think) GP & NH manager, to make it clear how distressed mum is getting & to explore ways to help her. Counselling for mum has been mentioned – I’ll be on the case to get that sorted asap – & her pain relief has been increased.

Didn't see her yesterday (couldn't bring myself to go) but DB2 & I went to see dad & his sister who’s staying for a week or so. She’s started teaching mum simple breathing techniques, to try to calm herself down when she gets anxious. Mum's anxieties translate into muscle tension which leads to increased pain. I never thought she would be receptive to the idea, but apparently she tried it out a couple of times & aunt thinks it will help.

I’ve taken up meditation again to try and calm myself down too… Will go and see her later.

[Theas18]

Ping pong im so sorry your mum is going through this.

When you say she couldn't come home even with. Care package , what have you been offered? Do you have CHC funding? I am in the middle of this for mum and it looks as if we are on fire 24hr care at home.

The other thing that has made surviving this posdible for me is one that I was very reluctant for initially but as of Monday ive been signed off work. I still feel guilty but a weight has lifted from me especially as im i a job that would not be forgiving of error or distraction. At least work know I'm not there and can plan. This Monday would have been the 3rd random day this year i couldn't be there.

[RandomFriend]

Your poor mum in pain and feeling frightened, and not getting the care that she needs.

When my mum was in a hospice at the end, the nurses were lovely, we were allowed to spend as much time there as we wanted and DSF could even sleep in her room so that he was with her all the time.

I hope you can get your DM moved to somewhere that she gets care that is kind. I have pm'd you.

for you.

[PingPongBat]

Just spoken to my aunt - 3 bits of progress, hopefully all positive.
1 - Our community MacMillan nurse is applying for one-on-one care for mum in the NH from 5pm - 11pm each evening, provided by a local hospice
2 - GP has suggested she self-administer her break-through pain relief so she doesn't have to wait for the nurses, which should reduce her anxiety and avoid distress when having to wait for staff to provide it
3 - a complementary therapist is doing a 'taster' session on Friday which she can sign up for (massage, aromatherapy etc). Dad is sceptical ("what use is that?") but I think it would be nice for her, her legs/feet are swollen and some gentle massage could a pleasant relief for her amidst all the pain.

Apparently she's sleeping more, probably due partly to more pain meds & maybe also general deterioration.

[RandomFriend]

Oh, that is great news. Your DM will be much happier once she has the one-on-one in the evenings and the complementary therapy will be something for her to enjoy.

[Theas18]

Ping that sounds really hopeful. I'm very much an orthodox medic but the effect of alternative therapies in end of life care can be good. Just touch, any touch can be really soothing

[whataboutbob]

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

[twentyten]

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.

[PingPongBat]

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.

[Needmoresleep]

]

Thinking of you.

[twentyten]

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.

[PingPongBat]

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.

[twentyten]

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

[PingPongBat]

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.

[BestIsWest]

Pingpong. Thinking of you.

[twentyten]

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.