Page 5 | So ashamed of how I feel can only say it here

DougRossIsTheBoss · 20/12/2020 16:53

I also wonder if getting the GP and/ or Macmillan nurse involved is the best thing to do.

Be honest and tell them that your parents are refusing the care. A professional might have some traction on the situation.

I am grateful to the GP who visited mum at home and said 'you need to go to the hospice now' At the time I thought it was very harsh and surely too soon. She was absolutely right though.

Maybe if a professional says it they will listen. They should surely be visiting regularly in any case.

oneglassandpuzzled · 20/12/2020 16:53

@LastRoloIsMine

I tried to NC as I am that ashamed but I cannot remember my password so will have to own it...kind of.

My father is currently at home dying of cancer.
He was originally in hospital as he suffered strokes/heart attacks but in the end there is nothing they can do so they gave us options.
My mum and my sister wanted him home as did he so I did all I could and sorted out carers and equipment. Hes been home 4 weeks.

This is the shame bit. I didn't want him home.

They send the carers away. My sister has virtually lived at my parents with me staying on the days I dont have my own children and its just so hard.
He is bed bound and needs round the clock care.
He wakes throughout the night so we sleep on the sofa to see to him.

I never wanted to do this. I knew how draining this would be on everyone and I feel constantly guilty that between my 3 children and my full time job I cannot be there more.
My hair is falling out I barely sleep or eat and the guilt I feel because I am failing my parents my sister and my DC is making me ill.

My family won't listen. They won't let the carers do anything because my father refuses so we have to.
We have spent the last 4 weeks just watching him slowly die.
I am not spending Christmas day with my DC as my sister is going home to her own children and so she should so I am there with mum and dad. No Christmas morning no gifts no Christmas Dinner which I know makes me sound like a terrible person and I feel like one.

I used to believe dying in your own home was the best way but now living it I would never want to put my children through this. I would never want them to feel this guilty or this stressed and tired. I would never want them to put me above their own children.

I dont expect anything from this thread I just had to get how I feel out as I cannot speak to anyone in RL about it.

My father died this time last year and I wouldn't have wanted to do everything for him, either. I was his daughter, not his nurse or carer. That wasn't how I wanted to remember him.

Let the professionals do what they are trained to do.

CharityDingle · 20/12/2020 16:53

Aww, OP, this is so difficult for you. A friend of mine had this with her parents, some years ago. She and her sister were run ragged trying to care for their elderly parents, her dad was adamant about not having people in the house.
They just had to have carers, in the end. It wasn't sustainable. They were trying to manage their own families, work, and drive back and forth daily.

As others have said, also, especially at the end, there will be most likely a need for medical expertise.
Please do talk again to your mother and sister about getting carers back in, you poor thing.

TheNoodlesIncident · 20/12/2020 16:55

I think @LastRoloIsMine you're going to have to show them some tough love. You can't keep doing this and it's unfair on you (and on your children). You really need to step back, and your sister too, as without your help they will realise it's too much to ask of you. They will either have to accept the carers - and they will find that as trained personnel, they will be much better at the tasks than you - or they will have to move him to a hospice. Neither of these options are awful, it just probably isn't what they expected to happen. It's very difficult to have conversations about end of life expectations and hopes, but if it can be managed it will make easier to understand what will be possible and what will not be achievable.

Please don't feel guilty about taking a step back, this isn't a feasible plan and as his condition worsens, it will be harder to deal and cope with. He really needs, for his own comfort as well as his family's, to be cared for by trained professionals who will be better at the job and foresee issues that can arise.

LisaLee333 · 20/12/2020 16:57

@LastRoloIsMine You shouldn't feel guilty, as you should not be expected to do this. Sadly, society expects people (women usually) to be the carers for the sick and elderly in families. As a few people have said, you need to get the carers back...

This bit confused me though.

Firstly in your OP, you said...

I don't have my own children and its just so hard.

Then further on in the post you said...

I never wanted to do this. I knew how draining this would be on everyone and I feel constantly guilty that between my 3 children and my full time job I cannot be there more.

So do you have children, or not? Maybe I misread, but you said you don't have them, and then said you have 3. Have I misunderstood/ misread?

Frenchfancy · 20/12/2020 16:58

Call your local hospice, try and get your mum to visit. People have an idea in their head what a hospice is like but the reality is quite different. When my df died the hospice was amazing, I honestly can't recommend them enough. Much better than being at home.

LisaLee333 · 20/12/2020 16:58

@LastRoloIsMine

IGNORE ME, I did misread. Sorry.

Your post said "My sister has virtually lived at my parents with me staying on the days I don't have my own children and its just so hard."

ancientgran · 20/12/2020 16:58

I can't understand a parent doing this to a child. I've told all my kids that when the time comes they are not to feel guilty, nice if they visit me but under no circumstances do I want personal care from them. I'd prefer them to have nice memories, not memories of wiping my backside.

Look after yourself, the reality is it would be better for him if he was in a hospice with trained people with the right equipment looking after him. I've known a couple of people who fought the idea of a hospice and once they were there they said it was for the best.

JuliaDomna · 20/12/2020 16:59

OP what you are feeling is normal, please don't be ashamed of yourself. I cared for my husband, mother and father during their final illnesses. It is hard and tears you apart. Lack of sleep, desperation to 'make it better' for them, witnessing their light dim each day take their toll. It is also physically hard, lifting them, washing them and feeding them. All this and your own grief at losing them. I lost count at the number of times I sat with my head in my hands in tears just wishing it was all over, for them and for me.

Now looking back I still feel guilty at those feeling but I also know I gave everything I had physically mentally and emotionally. You are not superhuman. what you are feeling is normal. Please be kind to yourself.

stopringingme · 20/12/2020 17:00

Please get help in and see your DC on Christmas Day.
You will have to be firm, you cannot carry on like this as it does not stop after they die, you DM will lean on you and you will become resentful as you will not be able to grieve as you want to and you will have to cope with your DC's grief also.

My DM died over 5 years ago and I still feel resentful towards my DF as I was getting 5 calls, or more, a day at least from him whilst she was getting progressively worse with Dementia and when she was put in a care home he expected me to run around after him as my DM had done everything for him .

He was also asked at the end of her life if he wanted her to be brought home - he was considering it until I said does he really want to turn over every morning and see DM's bed where she died, I also told him I could and would not help as I could not cope seeing her die.

I am one of 4 children, but it all fell to me, none of the others believed what I was saying and they did not make the effort to visit and when they phoned DP they were not told the truth.
The golden child was the only one my DM remembered, DM thought I worked for her !

My DF came out with a classic he did not want to bother the golden child as he has his own (grown up) family ! what was mine a figment of my imagination ?

When she died nothing changed and DF still rings and expects me to do everything for him, take it from me the mental strain never ends, please put boundaries in place for your own sanity.

JuliaDomna · 20/12/2020 17:04

I meant to add do you have the support of Macmillan Nurses? Do you have all the equipment you need? Hospital beds, advice on incontinence etc? Also if you live near a Maggie's centre they give support to people with cancer and their relatives. Some hospices off this service as well.

www.maggies.org/my-maggies/?gclid=EAIaIQobChMIpp2IlIXd7QIVVeDtCh15gAM3EAAYASAAEgI4MvD_BwE

Fullyhuman · 20/12/2020 17:04

You’re a single mum?! How are your kids doing? Can you insist on stepping back if it’s what they need? I’m so sorry you’re going through this, I’m sure there’s no ‘right’ option though, please be kind to yourself, talk to yourself as you would to a beloved friend.

diddl · 20/12/2020 17:06

They (mum & dad?) can't send carers away & expect others to pick up that care.

You are not failing them by not doing what you haven't agreed to do.

Are you close enough to do at least some of Christmas Day with your own family & then visit your parents?

WiseUpJanetWeiss · 20/12/2020 17:06

[quote LisaLee333]@LastRoloIsMine You shouldn't feel guilty, as you should not be expected to do this. Sadly, society expects people (women usually) to be the carers for the sick and elderly in families. As a few people have said, you need to get the carers back...

This bit confused me though.

Firstly in your OP, you said...

I don't have my own children and its just so hard.

Then further on in the post you said...

I never wanted to do this. I knew how draining this would be on everyone and I feel constantly guilty that between my 3 children and my full time job I cannot be there more.

So do you have children, or not? Maybe I misread, but you said you don't have them, and then said you have 3. Have I misunderstood/ misread?[/quote]
Read the whole of the first sentence again.

My sister has virtually lived at my parents with me staying on the days I dont have my own children and its just so hard.

She’s at her parents on the days she doesn’t have her own children with her.

Labobo · 20/12/2020 17:07

He needs professional carers and you need a break. Your hair falling out? Not seeing DC over Christmas? This sounds unnecessarily joyless. You have to take care of yourself. Can you go home and spend Christmas Eve during the day with your DC - celebrate a day early with them. They'll be delighted to open presents early. And then spend Christmas Day with your parents. That way you will have happy memories of the day before with DC and won't feel you missed out as much. These are extraordinary times, so there's no need to follow strict rules about what you celebrate when.

I'm so sorry you are going through this. it's a horrible time.

ProfessionalWeirdo · 20/12/2020 17:10

And looking at this from another angle, imagine how tired and exhausted your Mum is. It's not going to be a bad thing to put your foot down and insist she accepts help.

OP, could it be that your mum is reluctant to ask for (or accept) outside help because she's afraid that people will think she can't cope?

combatbarbie · 20/12/2020 17:10

Is your dad still "aware" I think it's very selfish of them to expect this from you both.

If you are a single parent I assume your children are with their dad??

Audreyseyebrows · 20/12/2020 17:10

You are amazing op. You are!
It’s so hard, I’ve done it and wouldn’t wish it on anyone.
I think having professional experience makes it harder. You can be the best nurse/carer in the world but you aren’t emotionally attached.
Good luck op.

Serin · 20/12/2020 17:12

You have done all you can OP, you sound utterly exhausted and I cant imagine how you feel emotionally.
I agree with everyone saying it's time to let the professionals take over now. They will notice things that you, as lay people, may miss, skin integrity for instance. In my work role I often have these conversations with people and patients sometimes take it better from someone in a uniform. Can you have a word with one of the visiting health professionals and ask them to discuss things with him.

WiseOwlWan · 20/12/2020 17:13

You shouldn't feel shame. Decisions have been made for you.

Serin · 20/12/2020 17:14

Ooops, sorry, I missed that you have professional experience. I guess that makes it even harder in some ways as people just expect you to cope.

Yohoheaveho · 20/12/2020 17:14

@cptartapp

I was a district nurse for many years and nursed the terminally ill at home. I would never ever choose to die at home. I have seen many families given unrealistic expectations of how it will be, and subsequently struggle. What a burden to place on family in your final days and weeks. It must taint your memory, and dare I say feelings about your parents that will stay with you. I would also worry about your mother's expectations of you longterm meeting her needs going forward. Completely unfair to put this on you.

agree 100%

StatisticalSense · 20/12/2020 17:14

This is a horrible situation but kicking up a fuss on Xmas day as some are suggesting will help nobody. It is also unfair on your children's dad to ask him to change his plans at this stage to allow you to see your children on Xmas day so the day itself isn't the problem.
You need to have a conversation with your parents and siblings about allowing the carers to do more but however much the carers do your mum will need emotional support from somebody that knows her so leaving her alone with your Dad on Xmas day will make things even harder on her even if carers were coming in.

Joeblack066 · 20/12/2020 17:14

I utterly hear you and have expressly told my children that when the time cones they are not to have me gone. I will not be a burden to them. I’m hoping assisted dying is legal by then tbh.
Don’t feel guilty x

diddl · 20/12/2020 17:16

You don't need to be there on Christmas Day to help your mum btw.

They are trying to force you into it by not accepting necessary help.

Don't let that happen.