Depression and living alone

Hi mj

Like you I am coming to the end of life care having been taken off treatments back in January  due to nothing working anymore, during these last 3 months I have deteriorated in many things I could do 3 months ago which I can no longer do now, fatigue and breathlessness is the worst but I am having home oxygen delivered next week which I’m hoping will help, also on slow release morphine with quick release morphine for breakthrough pain

I also live alone and though I have good support from my daughter and son they both work full time so I do worry also if I will manage as my health deteriorates further. I have considered if I will need Carers coming in when this happens, but am managing at moment to do basic everyday tasks but I agree it’s so much harder when living alone, I’ve   been thinking of getting one of those alarm support systems where you can press a button alarm if you need help urgently and they contact family for you or if more urgent arrange an ambulance to come out 

Have you discussed about going into a hospice for end of life care, I have asked for this but it all depends if they have availability when the time comes with my hospice as they are sometimes struggling for beds 

I have never tried anti depressants mainly for same reasons as you have said will it make   you more out of reality I suppose until we are willing to try them we won’t know

Im really pleased Macmillan are trialling this sub group as it’s good to open up with these issues 

Love Margaret 

for now I'm going to send you both a panda hug, because that has been by far and away the most successful method of conveying my feelings of sympathy of empathy or whatever the word is, pictures speak louder than words anyway

the team need to fix the picture upload because there's no arrow on the dropdown menu ... remind me and I'll send a 'mrs angry' message to the IT support team

This 'carers' thing sounds like it's allowing someone else into your home and I don't have a problem with that, I had someone tell me I needed an au-pair and I found that to be an excellent solution but you have to accept that they will come into your life, your house, your kitchen, your bathroom, even your bedroom -.- and move things around, stuff that doesn't usually get moved around.

But it's okay.

I took myself off on the most amazing trip ever and I stayed in the Raffles Hotel in Singapore and I loved every minute but I had to watch, or not watch, a 'butler' unpack my stuff, sort through my 'smalls' and rearrange my bathroom essentials . He offered to pack for me and I stupidly declined. 

I should have allowed myself the luxury of having that boy look after me. 

End of life should be a ritual carried out in Raffles . The staff there are epically awesome. 

and I did look up end of life doulas and it is something that should be approved on the NHS

We need to do end of life care better than we do now.

How do we translate Raffles and the butlers? Those people who serve so genuinely. 

Carolyn

xx

Hi m-j 

I'm Jim. After reading your post, i couldn't help but respond due to what looks like many similarities wee both seem to be experiencing at such a difficult time. I too am a incurable on no treatment (voluntary). I should say, i reached the end stage of prognosis  in march 2016 so, hope that can offer some optimism?. In my early diagnosis, (2012) of Metastatic prostate cancer, i was prescribed anti-depressants due to not coping too well with the knowledge of how devastated my daughter was, and that i would not get to see my grandson's aged 7 and 9 at that time reach there teenage years. For the first two weeks on the anti-depressants, the side effects were pretty awful nausea, and dizziness so, alongside your morphine medication, i feel the fairies' probably would be a unwelcome presence. I can't spend as much time with the boys as i have in the past, thanks to not being "as" active as i once was, but the daughter makes enough visits (just enough!) to keep me smiling and mostly happy. Not saying i don't still get my down days. I'm taking liquid oramorph & Buprenorphine Transdermal patches for symptom relief, (No Anti-depressants thanks) . Take care m-j and hope to keep in touch with some happy thoughts...xx

Hi Carolyn

Thanks very much for the panda cuddle it did make me. smile. 

I am sorry l did not realise from your profile that you are incurable and having no treatment. Do you mind me asking how long you have had this prognosis as l am encouraged by Jim's message of how long he has been living with his end of life incurable no treatment prognosis?

In an ideal world your experiences from your hotel stay at Raffles would be wonderful. Sadly the choice is ending your days in a hospital or hospice. Living alone rules out hospice. support to end your days in  your home.  Doulas on the NHS is an interesting idea but l do wonder if the hospice specialist palliative nurses are actually end of life doulas? 

Thanks again for responding 

hi

I haven't been given an incurable diagnosis by my team but then they weren't able to diagnose me successfully in the first place.

The surgeon failed to remove a clearly obvious tumour in my breast that I pointed out to him because they'd failed to report it from the MRI scan and he was following the report and ignored me. 

I had to insist on follow up scans, they were only offering a mammogram and I'd been told the reconstructed side needs ultrasound scanning for recurrence. Me being vigilant to signs and symptoms was a waste of time from 2011 to 2015 since everyone ignored me and said it was "age and hormones". None of my symptoms were classic breast cancer. The first routine mammogram missed the tumour in 2012.

So all in all I don't really trust what they say and last year, despite my insistence they scan my head, they only scanned up to my ears. 

To expect that they have given me a full and accurate assessment seems incredibly unlikely. 

All this from what is supposedly the top cancer hospital in the country.  

All that coupled with the fact my parents died at 60 and 61 and I'm 56. It would seem unrealistically optimistic to take a longer term view. 

So I contemplate my fate on a regular basis and consider what I want from end of life care. We'd also debated it recently in The Room. When I saw your post I thought I'd share my thoughts with you and offer the panda.

Don't get me wrong, I'm not sitting around waiting to die, far from it. I even renewed my railcard for another year. But then I remember chatting to a man whose wife was getting progressively more ill with brain mets and she was so bored she went back to work. One of my best friends had bone mets and on a visit to the hospital she was asked if she had any other symptoms, like a headache and she said now you mention it maybe and they scanned her head and found 3 tumours. That was the Marsden, actually, come to think of it. She carried on working at her garden centre and even had a hip replacement to improve mobility. 

Another friend died last week and she handled the last six months really well but she didn't live alone and she had an active social circle. 

So I can't envy her, I'd never be able to emulate her approach or attitude. 

There's more but I don't feel like sharing on here. Although I have shared some of it in The Room. 

Suffice to say I am not at a point where I'd happily shuffle off this mortal coil, I have too much unfinished business. 

I hope there will be a place in a hospice for me because I don't want my daughter to have to look after me, she'd find it too awkward. 

You're probably right, the palliative care nurses are probably similar to doulas, I only heard about birthing doulas recently. The Marie Curie ads are good, I'd be happy with that care but I suppose they're as stretched as Macmillan.

Another friends' mum attempted suicide 2 or 3 times last year and we did talk about raising cash to take her to Switzerland  but some of these things aren't allowed under our current laws. 

It is a topic that occupies my thoughts and there just aren't many places to talk about such things. 

Carolyn

xx

Hi Margaret

Thanks so much for responding to my message.

I am sorry you are struggling with breathlessness and hope the oxygen makes a difference. Fatigue is hard and l did do a course at the hospice 'managing fatigue' .l understood their suggestions but if honest nothing is making any difference.and it feels it is now just something l have to accept and live with. 

Yes l have asked to end my days in the hospice but like your hospice they are oversubscribed. Living alone prevents us ending our days in our homes with hospice support. Have to.admit l do worry l will end my.days in local hospital as a & e experiences not been reassuring.

Thanks really helped you too are nervous of having anti-depressants alongside the morphine we are both on. Jim describing his reaction to them confirms my fear is not unfounded. 

I would be really interested to know how you get on with the oxygen if you don't mind. I am rare as my oxygen levels are still quite good and consultant surprised me by saying he doesn't think l will need it. The worry with me is my weight. I lose weight with each chest infection and last time l had 5 consecutive ones  I do think living alone doesn't help as there is noone to cook for me. I now keep ready meals in the freezer but it still means l have to drag myself out of bed. Hope do you cope?

Yes it is really good we have somewhere to freely discuss end of life issues and experiences and l do hope we have enough posts to make it permanent.

Hope you have a nice weekend x

last bit, I'd forgotten from your original post ...

the bit that prompted the response

grieving 

What finally made me pay for the screening was that I'd been walking around the park and suddenly had a premonition I wouldn't see Christmas.  I felt incredibly sad and only just managed to stop myself bursting into tears. I'd had loads of tests, they'd all come back clear, what could possibly kill me in a few months ?????  so I shook myself and carried on walking. 

But when I got home and looked into when I'd had those scans and investigations I realised it was about time to go round again, so rather than go back to the GP who'd scoffed I figured I'd pay and go back to where I'd had excellent treatment previously. 

I also remember driving past a children's play park and feeling sad i'd never see any grandkids ...

The run up to that first Christmas was the last 2 of 4 tax treatments and I was struggling emotionally, but I was too exhausted to be depressed, just incredibly thankful to see January 2016.

The counsellor wasn't much help, she was lovely but she didn't like the idea that I accepted I was just one of a million or so patients, she said it was sad, I said it was realistic. Same as contemplating the worst case scenarios, if I contemplate it I can prepare myself for it. 

Sorry, I don't have any ideas on how to cope with the grief, other than keep soldering on, but if I do I will share, promise 

Carolyn

xxxx

Hi Jim

Thanks so much for responding to my message with your experiences. 

It is really encouraging to know you have been living with an end of Life prognosis since 2016.

Thank you your description of what happened to you on anti-depressants confirms my fears aren't unfounded. Oramorph affected me and l now have liquid shortec The same ingredients as longtec slow release that l tolerate ok.

I have a 2 year old grandson and a month old granddaughter. Unfortunately my daughter is in denial as to my failing health so l don't see my grandchildren very often and is why my counsellor thinks l am grieving for not being able to be the grandmother l want to be. There is also not having the time to repair the relationship despite me keep trying. 

Yes please l am all for happy thoughts.

Thanks again for responding and look forward to getting to know you and your coping strategies etc x

Hi mj

Thank you for replying, it seems we are going through very similar paths trying to manage best we can by living on our own.  Re the oxygen, I’m not getting my hopes up to much as my nurse said it works well for some but not for others but willing to try it as it’s a struggle even to walk round supermarket anymore, I’m doing more on line shopping and my daughter takes me out when she can and we use a wheelchair then to get round. Like you I don’t cook meals from scratch anymore I order ready frozen meals which I stock up on

I’m always worst on waking up in morning always in more pain first thing on waking, I take all my my meds upstairs when I go to bed and have them on hand on bedside cabinet so I can take them straight away then stay in bed for another hour while they start to work before I even think about getting up, you ask how I cope? to be honest when you say we have to accept it and live with it best we can just about sums it up, I do try to look for positives each day but some days are harder than others

It’s been really good mj reading your posts and your own thoughts on how your feeling and how you deal with things it makes me feel that I’m not alone and it’s good to share things with someone who is going through a similar experience 

Have a good weekend and keep in touch 

Love Margaret 

Hi Margaret

I am really pleased you answered my message as l know we have had different journies with lung cancer but find ourselves now trying to live with debilitating breathlessness and fatigue. I don't know why l never thought of it but reading how you are coping in the mornings is going to help me. I live in a ground floor flat and can understand you living in a house taking everything you need upstairs. I get up and take my meds hunched over kitchen worktop wheezing etc. Never thought to have my meds on my bedside table. So a really big thankyou l will try your approach tomorrow. I did make a joke at fatigue classes that getting washed and dressed and vice versa at night takes ages and wish someone would invent self cleaning clothes! The serious ot course convenor said do you want me to arrange carers! No but l did point out that being on my own l miss out on the stage when partners step in and help you get dressed. I have a dread of carers as had a bad experience when l lived with my father and l couldn't look after him. The hospice social worker tried to explain my father's care was social and mine would be medical but when challenged both schemes use the same firms.

Shows this trial is worthwhile as l have discovered a new approach to taking my meds which l am sure l will report tomorrow has made such a difference to my day. 

Thanks Margaret x