Upset Rant

[Hopes77]

I'm sorry for this rant but I'm sitting here in my mum's home, looking at her things and fuming, angry and distressed that this b'tard cancer is slowly robbing me of my mum.

She is no longer fully lucid or co herent.

She's incontinent, in pain, and lives for her next morphine dose.

My mum no longer has capacity or the insight to just how unwell she is. If I'm looking for a positive in this awful state of affairs then there's one.

She crying to come home but we've been waiting for 7 weeks for a nursing home but it's waiting for bed space.

We've been told by the hospital she cannot go into a hospice as this is now an overspill for the hospital and that they are keeping her pain under control on the pain palliative ward?

She's been in hospital 11 weeks and deterioted that past 12 days.

This time last year my 78yr old mum was very independent. She used to get the bus into town, visit friends and family and I can't believe that we are in this situation.

I've been told I have until the end of summer with my mum.

I visit her every day in the hospital and I want to run I don't think I can bare much more seeing her in so much pain.

Then I feel guilty wishing she was free at last from it all.

How do you find coping mechanisms as a family member. Im an only sibling but i get support from my husband but i think i need to hear from people who fully understand what I'm currently going through x

[doone62]

Hi Hopes77.

My world fell apart when I found out my mum had the brat from hell.

My hubby has been brilliant same as yours. I do have siblings but as the oldest take the brunt of it.

Do not in any way feel guilty wishing her pain away. If I could swop places with my mum and take onboard what she needs to go through I would do it in an instant.

I don't know where you are but I hope you get sorted soon but from a selfish perspective I want my mum here forever even tho I know that's never going to happen, but like you I cannot bear to have my parents in pain.

If you have limited time make it count.

Can you cook? bake your mum her favourite cake etc believe me it makes a difference.

If this was my mum crying to come home I would say bog off she wants to go in her own bed and I would lay down beside her give her a snuggle and a cuddle.

[miasam]

I'm so sorry to here a bout your poor mum cancer is shit it takes so many good peaple .my husband who was 73 died last November .I know it's very hard to watch someone you love deteriorate and how helpless this makes you feel I'm glad you have your husband's support you need as much as you can get .if your mum is asking to go home is there any possible way this could happen my husband died at home in his own bed .but I do understand this isn't all ways possible. If she can ask if you can have a home care package we're you get a palutive nurse you get help in washing and and changing them (my husband was dubble incontinent)making shore your mum is as comfortable as possible they will will administer medication .and if she is needing constant medication they can put in a syringe drive in which would give constant pain relief. If this isn't possible. Talk to your mum about family things what you have done trips holidays bring pictures in for her to see does she like music my husband did he loved smooth radio so I used to put that on low and it seemed to relax him a bit is your mum still eating if she is bring little bits off her favourite foods not to much as this can over power them and they feel guilty they can't eat it all .all I can say now is try to take care off yourself I know how much it takes out off you be strong and take as much help and support you can get .and don't feel guilty when you want it to end for your mum .near the end I begged for God to take him and stop his pain .Take care off your self big hugs x carol

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Hopes77

So very sorry to hear about your Mum and it is understandable how you are feeling. Your Mum should not be in pain and ask to speak to the pain management team and Consultant in the ward, via the ward sister/nurse on charge, it may be worth looking at other Hospices in the area.

Ask about her incontinence and how this is being managed in the best way for your Mum.

Speak to Patient advice and liason services, known as PALS, they are in most hospitals and I have placed their website here: nhs.uk

They will listen to you and act on your behalf to get the best care for your Mum.

As well as pain relief, there are other medications that may help your Mum, e.g if she is agitated or restless.

If you wish to discuss anything you can call us on our free nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

[Hopes77]

Thanks everyone for your comments.

Unfortunately my mum is unable to return home as they said that her medication is complex and that they can only provide 4 x Care of a night sleep over and 4 x half an hour per day care.

The agency they contacted said her care needs are too extreme.

I have Lupus and on medication and exhausted. I was on the floor after caring for her for nearly 10 months and trying to monitor my own health.

I've tried to talk to a Dr since Monday but the senior nurses said they are short staffed so I haven't managed to speak to one all week.

I will try yet again today.

In relation to hospices I have been told both by the pain management consultant and Dr that hospices are no longer for palliative care and that she is on a pain management ward getting this treatment.

Also if she was in a hospice once they were on top of her pain she would be discharged to a nursing home?

I always thought that palliative care and end of life care patients were treated in hospices?

Is this now not the case due to gov cut backs?

[waterfd in reply to Hopes77]

My local Hospice provide palliative care and did so for a friend of mine who had Mesothelioma. It is mainly funded through donations although some does come from the NHS.

My wife Chris was at home when she passed and the Hospice provided Hospice at Home nurses twice a day 7 days a week. They weren't allowed to administer drugs but the support I got was outstanding and I still support the Hospice because of that. In the last few days they told me to get in touch with our doctor and the oramorph she was taking soon became not enough so the local district nurses fitted a syringe pump unfortunately she passed shorty after but not in an agitated state quite peaceful.

Keep pressing them. I don't know what area you are but it still seems a lottery on treatment. My heart is with you.x

[JanetteR57]

So sorry to read of your distressing experience with your mum. It's awful watching loved ones in this way. Regarding your question about end of life care, it really depends where you live. In the area where I am there were no hospices - they've historically tended to be in 'better off' parts of the country so our area set up a 'hospice at home' service whilst we reviewed all end of life care. Palliative care varies around the country as to when it starts - many would like it sooner (supportive care as soon as a non-curative diagnosis is given) but the reality is without capacity/space in the hospices or care homes, often the only alternative is a hospital particularly when patients have complex conditions and medication needs. Therefore it's not government cutbacks but decades of underinvestment in end of life care (by successive governments) but the cutbacks in social care are having an impact on discharging patients out of hospital into alternative care arrangements so this isn't good for anyone as they can be fit for discharge but not fit for returning home on their own so remain in the hospital beds. It's quite a vicious cycle. Many care homes do not deal with end of life patients but call the ambulance and transfer them to hospital at this time anyway - all depends on the type of care/nursing home itself. I do hope you can get some support for you - this is crucial at this difficult time but the advice from others is worth following. As a patient, it can be very distressing to see relatives upset and can add to them feeling they have to be strong for others so it's important for you to have a 'release' mechanism especially given your own health issues. good luck and hope some of the suggestions pan out better for your mum. thinking of you.

[Mum2charlie07]

Hi Hopes77

I am so sorry to hear what your poor mum and you and your family are going through. It is absolutely horrendous. I too went through the same with my mum 2 years ago. She was 68 when she passed away. It took 18 months of her being in agony and going back and forth to the GP before she got her diagnosis of lung cancer that had spread throughout her body. She passed away just 4 months later. You will feel anger, despair, helpless and just incredibly sad. The only way I could deal with it it at the time was just to focus on one day at a time. I couldn’t look beyond as it added to the worry and stress. If you are able to get your mum into a hospice I would urge you to do so. These places are amazing and they will manage and control your mums pain much better than the hospitals can. They will also look after you and your family also and the support is ongoing. The biggest thing for me when my mum went to the hospice was they helped give back some of her dignity. My mum was a very proud lady and like your mum she became incontinent and this was heart breaking to her. Again the hospice dealt with this in such a way that my mum no longer felt embarrassed. My heart truly goes out to you. After two years I still cry most days and I get bloody angry that this vile illness took my mum away.xx

[Jmc8]

Hi Hopes77

I am so sorry to read about what you are going through & can totally empathise having lost both parents last year in quick succession to this beast. I was robbed of my mum after just 7 days of being diagnosed and seeing how she suffered & the varianle care she had in those last 3 days was horrendous. I’m sure you will have similar experiences etched in your mind but remember you will have done your best for her no matter what. The day before my mum passed away we were told it had spread everywhere so it was just about pain management - she wasn’t well enough to be moved to a hospice although that’s what she wanted. Thankfully the next evening she had a massive heart attack. We were given a Macmillan nurse the day she passed away- she seemed to take charge of the pain management so wonder if that’s a route for you to pursue - they inserted morphine pump for mum

I too wasn’t well during all this (pneumonia recovery & lung cancer survivor) so know how hard it is on your body. Please be kind to yourself - is there a Macmillan or Maggie’s centre nearby to the hospital where you could get some support ? I’m also an only child too & got a lot of support from my partner & friends

Take care

Jo x