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Mumsnet has not checked the qualifications of anyone posting here. If you need help urgently or expert advice, please see our domestic violence webguide and/or relationships webguide. Many Mumsnetters experiencing domestic abuse have found this thread helpful: Listen up, everybody

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Original poster

DF s dying and we can't see him......family dynamics stressing me out

27 replies

whatisforteamum · 23/08/2017 08:27

I come from a large family so when df took a turn for the worse three weeks ago( he has cancer everywhere including his spine) and was admitted to hospital I couldn't visit him as I had started a new job but others did.
DM said his kidneys were failing so I went with dh my next day off.So did his db and wife then my other 2 dsis with their kids and dhs.
Df was sleeping loads and became tearful and overwhelmed and told DM repeatedly he was dying and wanted to.
My db came home from abroad and was upset when he saw how bad df was.He can barely walk and was having toilet accident s as he couldn't make the loo.
Df decided all IVs and meds were to be stopped and no one was to visit.
I usually see him each week and have only seen him once in three.
This is heartbreaking as we can only get brief updates and has caused friction between myself and both dsis who I m usually little contact.
Our Db is allowed to visit and support DM with lifts.....no one else can she gets cabs than call.I understand they need some time alone.
I'm finding it hard that I can't visit and hope it won't be too late as I've always offered help shopping and checking on them for the last few hrs they have both been I'll.
I have no idea why DM is doing all the visits and care and leaving us out of the loop.
My dd was allowed to pop in as she lives hundreds of miles away and came to see her grandad.
When I visited I was cheerful and positive too.

OP posts:

Gwilt160981 · 23/08/2017 08:37

Go and see him. He's your dad. I tried to be at my moms side as much as I could. First 36hrs I was at the hospice with her and 2 others and it was soul destroying. Take Care of yourself. Times like these families do become awkward.

Original poster

whatisforteamum · 23/08/2017 08:47

Db rang to tell us women he didn't want visitors.I understand he has so much wrong but we don't know why we are barred.
Sorry about your DM x

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Gwilt160981 · 23/08/2017 08:51

Ignore him. Families really do your head in at times. What's next they throw it in your face cos you didnt go? Sounds abit familiar. Just go see ya dad👍 do it for you.

ElspethFlashman · 23/08/2017 09:16

Ring the ward. Ask about visitors. Don't take your brothers word for it. He is not your Dad's next of kin, your mother is.

Original poster

whatisforteamum · 23/08/2017 09:19

Too right Gwit !! I'm always accused of being at work as I do work unsociable hrs.I just text him as I understand he has his mobile phone back.
I know the dying do withdraw but an couple of hrs in three weeks is ridiculous!!

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user1494409994 · 23/08/2017 09:21

As difficult as it is for you, your father may be struggling to cope with you all. You mentioned your sisters, their kids and other halfs. That's a lot to have to deal with when you are in the best of health never mind nearing the end. He'll be in a lot of pain and discomfort. He's probably embarrassed about the toileting issues and perhaps only wants a man there because they have the same anatomy so no embarrassment and his wife who'll have seen it all before. As hard as this may seem, your going to have to suck it up until he changes his mind or is no longer in a position to make a decision.

Original poster

whatisforteamum · 23/08/2017 09:29

Yes I did think the chronic diorreah was a good reason not to visit now it has stopped for over a week.we are a large family as they adopted 2 dcs.as well as the 3 of us so huge age range of us.
I guess I just feel helpless like I should be doing something! I will just have to focus on my new job for now.

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Iwillorderthefood · 23/08/2017 09:51

Can you manage to go on your own? If there is an issue with the bathroom when you are there, you will be required to wait outside whilst it's sorted. No drama, no embarrassment. Your father's wishes for privacy will be retained. you come in after and say nothing.

I don't want to upset you, but you need to go quickly if you are going to, as his refusal of meds and IV will mean he probably does not have long left. I went to see my father in the time after meds and IV had been withdrawn, it was a different situation, as he had some dementia caused by his illness. I went because I was told he would not remain conscious for much longer (did the 500 mile round trip to see him). It was so worth going to see him, he passed away the day after I saw him. Call the hospital. See if it's ok to see him, I assume he can refuse to see your but enable it to be him doing the refusing and nobody else.

I wish you well and hope you have a good support network to help you through this difficult time.

Original poster

whatisforteamum · 23/08/2017 10:01

Thank you and I'm sorry for your loss.I don't have any real life support as I don't have close friends and my Dh has a bad temper at times and.can be tactless! X

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Offred · 23/08/2017 10:02

I think you should talk to your DM about visiting. Say you would like to be there to support him, ask if he doesn't want visits is there anything else he would like you to do for him or for DM?

I think you need to not take this personally or you risk making this all about you (I don't mean that as unkindly as it sounds! Don't know how else to put it!). You need to feel like you are doing something, maybe looking after the rest of the family is what you could do.

junebirthdaygirl · 23/08/2017 10:16

The most you can hope for is to pop in for 5 mins give your dad a hug and leave. There is no place here for kids or inlaws. Short brief pop ins only. The poor man is not able for anything else. Make sure you keep messaging your dm so she knows she has yoour support and so she cant say later that you never came in. Your db may be protecting them so be in touch straight with your dm.

Original poster

whatisforteamum · 23/08/2017 12:29

Thank you all.I am picking up shopping for DM and just been to look for a night shirt for df as hospital gowns are awful and PJs too tricky for him to get off quickly.
The hospice at home aren't being as helpful as they would've liked so poor DM is unable to care for df at home as he wished.I gave her some no ey for the cab as she insists on using them every day over 30 pounds for a here weeks.
She also insists on helping df with pillow plumping and getting drinks or general care.
I don't know what harm 5/ mins of popping in would do and I agree kids shouldn't have gone in.....oh well I've offered so I just have to accept I'm not needed.Doesn't make it any easier though.

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User02 · 23/08/2017 13:21

Maybe DF is embarassed about his toilet problems.
Maybe DF want yo to remember him when he was less of an invalid in need of all sorts of care.
I also think things like toilet pads and incontinence goods should be used rather than trying to hard to cope with the problems.
A few thoughts. Hope it is of some good

sadie9 · 23/08/2017 14:25

Hi whatisforteamum, sorry to hear about your Dad's situation. I have experience of a family member being in a hospice and how difficult it is when the patient turns against everyone, and then another family member starts 'protecting' them from others. Or you get a 'gatekeeper' situation.
Your DF and DM don't want to be a burden on anyone and often in these situations one person takes it all upon themselves. So your DM prefers the taxi situation as she can control that herself, rather than ask for lifts or wait for people etc. If any person is the sort who likes to be in control of everything, this trait will be very exaggerated in a situation where a loved one is in danger. And others will be 'kept out' of that situation because the 'gatekeeper/protector' only sees the needs of the patient, and forgets that other family members have needs too, in relation to their loved one.
You can ask the hospice for a family meeting? That might be a possibility. So usually the medical staff will meet the family and explain the status of the patient, then the patient may want to attend the meeting or not. The hospice will have a meeting with the family even if the patient doesn't want it (I think).
The hospice are good about finding a balance between the needs of the patient, and the needs of the relatives in terms of visits.

Original poster

whatisforteamum · 23/08/2017 16:06

More valid.suggestions thank you.Df is in hospital.so.only.db.and DM.have.been at the meetings with palliative care nurses.DB thinks he has a bit longer to go so now I'm unsure why DM said his kidneys were failing.so we all went over that w end.He did have five days of drips then refused the rest.
My own dh was told his numbers were better however he has so much wrong with him they now want to move him to a nursing home as DM.can't have him home and he doesn't want the treatment the hospital can provide.
I bought him pads to rest his bad legs on and he has a sheath type.thing to collect pee at night but no catheter.He has pads too.
Yes DM has always tried to control us.
Even when they both had advanced cancer and chemo the nurse.told me she seemed to play the mines worse than yours with DF!!!
Tbh it is heartbreaking.I never thought he would be so I'll on and off then be hospital used for so long and we can't see him.

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Original poster

whatisforteamum · 23/08/2017 20:50

I rang him which is a compromise :) He sounded OK but admitted to be coming breathless now.A lady whose husband died of prostate cancer too told me he cut off his mum and daughter as men see themselves as fixers and this situation cannot be fixed as it were.
Also he struggled to keep up with conversations.
This has helped me immensely.:)

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grannytomine · 23/08/2017 21:03

I know it must be hard but if it is what he wants you should respect his wishes. I've told my kids that when the time comes I don't want people sitting round the bed, they can come and say goodbye and then leave me alone. Maybe your dad feels the same, you have visited and he wants that to be it.

I know it isn't right for everyone but I just feel that sad weepy people round the bed wouldn't actually do me any good and I think my feelings would be more important than anyone else. I did have a health scare last year and talked to them about it, I have also appointed one son as the "gatekeeper" and when they do their last visit he will make sure that is it.

Original poster

whatisforteamum · 23/08/2017 21:18

Fair enough grannytomine and I've always said dying isn't a spectator sport in that when my own nan died I wonder if she wanted everyone popping in .My dsis says the image of my nan so I'll haunts her and she would prefer to have remembered her as a well person.
Perhaps being warned this was going to happen would be been useful as funeral plans have been discussed a few hrs ago.Or perhaps df didn't expect to feel so humiliated or exhausted as he does.
Sorry you have had a health scare.

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Gwilt160981 · 23/08/2017 23:00

Do what you thinks right. Its your dad. I lost both my parents in under a year.my Dad went sudden (mom detoritated and lost battle to liver disease). I spoke to him 2 hours before then got a phone call to say something happened went down to the house to find he had died.. Spend that precious time you got with your dad.👍

spottybotty1 · 24/08/2017 00:46

Maybe if he wants you he'll ask for you but don't feel neglected it means he's ok and not reaching out in desperation. Take time to think about him, write him some nice comforting words and pray if you have religion .... if not take a quiet time in his memory. Try not to argue he certainly probably wouldn't like that ..... sorry for your struggle x

Original poster

whatisforteamum · 24/08/2017 07:54

Thank you .I've woken up feeling tearful which isn't like me.I spoke to him and he said he was breathless now.:( I have been respect ting his wishes as I don't feel its my right to rush over.We are all in limbo.....he can't go home and he doesn't want to now and the hospital have moved him four times which I don't blame the NHS.DM is looking at a nursing home today.
I thought last time I saw him might be the last time......I didn't think he would be alive but unable to do anything but take pain relief and sleep.:(

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grannytomine · 24/08/2017 09:02

whatisforteamum, thanks for the good wishes. It is obviously going to be hard for you all but to be honest however death is handled it is hard. Maybe your dad will feel different when he is in a home, I think hospitals can make you feel very detached.

I hope you are getting support.

Gwilt160981 don't you think people's wishes should be expected at the end of their life? If he wants his privacy why shouldn't he have it? If you can't concentrate on yourself when you are dying when can you?

Original poster

whatisforteamum · 24/08/2017 09:22

I agree tbh that if he wants privacy then that is his choice.I thinks its a natural reaction to visit and help people when they are I'll or struggling though so I do feel helpless.so long as DM wasn't just keeping us away as her decision that would make me angry.
I need to tell my dsis s not to take it personally if its his last wish xx

OP posts:

grannytomine · 24/08/2017 09:31

whatisforteamum, sorry my comment was in reply to Gwilt160981 saying spend time with your dad.

I understand about thinking is it your DM or DF saying he doesn't want visitors but you have spoken to him now so I assume you know it is his wish.

Is there something you and your sister could do together that might please him so you could support each other and feel like you are doing it for him. I was born in England but it isn't where my parents come from, as a child I visited their home towns but my kids have never been. I would love them to go so if they said they would go and visit the old places and take some photos for me I would love that. I think the not doing something is hard.

Original poster

whatisforteamum · 24/08/2017 15:32

Hi I didn't think the comment was aimed at me.I have been helping DM which is what Df would want.Just starting a new job hasn't helped as all my familiar faces at my old place would be kept my spirits up.
I will see what the move to the nursing home does next week.Now that he is breathless I'm not sure bow long he has with all his other co plications like DVT and cellulitus etc.

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