I hope you’re all well and having a good day so far.
So I went to see my dear friend yesterday, it was so good to finally see her that my anxiety lessened as soon as I walked into her room. She now has end of life care which means they’ve upped her care package to 7.5 hours a day. So when I was there the nurse was working on bandaging her arm ( which has severe lymphedema, due to the lymph nodes being destroyed through the breast cancer) then two different Carers came to take over until 9pm.
The bandaging of her arm and hand (which is huge now) took nearly two hours.. my poor friend. The rest of her is tiny- scrawny skin and bone. She used to be so fit and strong through her yoga practise... She was in so much pain I was biting down on my lip to stop myself from crying. I held her good hand. Sometimes she couldn’t say anything just had her head back, sheer exhaustion taking hold of her from the effort of trying to explain to Carers, who are helpful but appear untrained medically to deal with this. I baked her a chocolate cake with chocolate ganache as it’s her favourite- she sent me a message later that evening to say she managed to have a few mouthfuls. She loved the painting as well. But it was a stressful visit, as she didn’t have any moment to herself. I’m glad she has caring people like the nurses and Carers taking care of her though. Today she rang me as she said the Carers weren’t coming and she had some time to herself... she thanked me again for coming to see her. It was hard to leave and say goodbye yesterday and I promised to go and see her again soon. Her brother was quite hostile, when I asked him if I could leave my phone number with him “ just in case” he said “ what for? Am I supposed to ring you?” I said “ for my friend just in case...” I trailed off in shock.. feeling embarrassed.. I just didn’t know what to say. My friend was always telling me how uncaring her family were but I never realise to what extent... Today she tells me her brother and sister in law have sent her a joint text message ( she lives in a room upstairs in their house for the moment! ) the text said that his wife can’t cope with the extra laundry and cooking ( my friend hardly eats- chicken broth, fruit and yoghurt that’s it) and that they are need to have a serous talk tonight. I don’t know what that means for my friend, whether they want her in a hospice / or hospital. Or whether they are going to move her back to her step mother and dad ( who are both elderly and suffering from dementia) ... I’m hoping it’s a positive outcome for my friend and not one which causes her upheaval and more heartache from an uncaring family.
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Dalia74
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Thank you. She was in a hospice before the lockdown, but it was only for a short while to change up her medication- but from what I recall she said she didn’t have any peace, nurse talking loudly all day and buzzers constantly ringing...? She also told me that she would want to die at home and not in hospital, if I could take her in I would in a heartbeat. 😞
That's an awful way for your friend to be treated, currently she needs to be treated with dignity and respect, (hope you don't find this too upsetting, apologies if it does), what extra cooking is her SIL on about, and surely washing it won't be overly much, a few extra items per wash, thinking of you all xxx
Not at all Jennymary, I was thinking the same. They don’t even pop their heads round the door to say hello to her.. and they’ve kept her niece and nephew away from her too. They just seem disinterested. I did make excuses for them before saying that perhaps seeing her with cancer is hard for them to face but even their care coordinator who I’ve spoken to on the phone several times in a bid to up her care hours has said the same as me she Is “shocked By how uncaring they are” to add insult to injury they’re also all incredibly wealthy big big houses and like to get involve in charity work to show their community how caring they are but behind closed doors they’re neglecting their sister in her last few months! They’ve just built a hospital in India!!
It breaks my heart to see how your friends Brother and Sister in law can be so uncaring
If only they understood the meaning of end of care life which means she has weeks or months to live and they will not have to worry about her extra laundry or food
So sad that they can be heartless like this
I hope you continue to be a beacon of light for your friend and she will bless you throughout your life .
I hope that you are able to cope emotionally with the decline of your friend
Never easy but her pain and suffering will eventually end
It is at times like this you will re-evaluate your own life and do what is fulfilling for you
I wish you great courage and hope
Your picture reminds me of the blue beaches of Turkey
I was hoping to go but my Mother has explained given the high rate of the virus there and if I catch it I will be out into a hospital at my own expense
Thank you. I’ve done nothing but think non stop of my friend since I left her yesterday .., just thinking of how I can make her last few weeks or months better for her. I wish I had money to take her in.
I would love to go to Turkey but due to the virus and being in a foreign land I think it is too risky at the moment
They say if anyone shows symptoms of the virus , that person will be hospitalised at their own expense
That's terrible. I'm glad your friend has friends like you especially when her brother and sister in law aren't being very caring. As Ghounds says , is there a local hospice ?
You and your friend are in my thoughts and prayers. All my love Lynne xxxx ❤️🤗🌈💜
I think it is wonderful that you and your friend got to share some time together and you plan to see her again. If she has an uncaring family, your visit, would have meant a lot. I am so glad she found your painting pleasing and she must have appreciated the tie you spent doing it for her. As for a hospice, well, they are full of loving, caring people, that doesn't sound like the place she's in now. 😊🌸
I for one will be sending your friend my prayers and just like all the other caring members on here I hope she goes into a local hospice for the best possible care. ❤️🙏😇🤗
That really is very sad Dalia. Your poor friend, as if she isn't suffering enough. I find what her brother and s-i-l have said is absolutely unforgiveable. Maybe she would be much better off in a hospice, at least she would be treated with care, dignity and respect, unlike now. They don't know if they will be in the same boat some day so they should be on their best behaviour, there is such a thing as karma.
Oh my goodness Dalia74 , I read this with such sadness. Your friend should not be treated like this and it's awful to say but I do feel she would be so much better in a hospice as they are such caring places. My dad ended up in a hospice many years ago and they were so caring. Your friend's brother and sister in law sound so harsh and uncaring, they must be such unhappy people to behave like that.
I really do hope that your friend ends up in a much better place than her brother and sister in law's house.
Oh my goodness. That’s awful your post took my breath away! I would be honoured to look after someone in her position. With carers in and out there would not be a lot else to do other than a small amount of meal preparation and showing that you care.
I’m glad you saw your friend. Sorry, I’m lost for words!
I know Ali... thank you. I feel the same I would be honoured to look after someone like her... I really wish I could take her in and just lavish care and love on her. I feel really broken today.
I know I messaged earlier on but just thought bid message you again.
You and your friend are in my thoughts and prayers. You are a true and loyal friend, I'm sure your friend appreciated your visit and will definitely be looking forward to seeing you again. It is unforgivable what her brother and sister in law have said. Yes, she would definitely be better in a hospice, they are wonderful places. You would be allowed to visit her at anytime. Thinking of you both
Pm me anytime. Lots of love and hugs Lynne xxxx ❤️🙏💜🙏
Dalia, it's the middle of the night and I've just read this. I had a dental appointment this afternoon and I'm afraid the logistics sort of took over my day.
Reading this has shocked and saddened me so very much. From my own experience, I can say without hesitation that the best place at this moment and from now on for your dear friend, with whom I have so much empathy, is a hospice.
As soon as I was wheeled into my local hospice late last year, having been assigned to it during a month-long stay in hospital, I felt a sense of calm and belonging. As the radiotherapy took effect, I progressed to a zimmer frame, and I would look forward to my weekly participation in a workshop there, where we talked openly, among friends, about our death, yes, but also about our life while we are still living.
With lockdown has come a new way of interacting with my hospice, which now extends support to me remotely, as I am an outpatient.
Residents are treated with kindness, compassion, dignity and so much love.
If you have any say at all in the matter (and having read about your friend's brother's hostile response to your perfectly understandable and considerate words and gesture, I am not convinced that you do, but I hope I am wrong), I urge you to try your utmost to have her moved to her local hospice. If she has already been admitted there, she will be on their radar as a client in the community. My hospice is available to me 24 X 7, irrespective of whether I am an outpatient or a resident. A consultant has been assigned to me and I am able to speak with her or email her whenever I need to do so. She liaises seamlessly with my medical caregivers in the hospital's oncology department as well as with my GP. The hospice nursing staff are also available to me round the clock, even though - currently - I live at home.
These support systems are your friend's right. Your friend is no longer able to exert her right(s), but others can do so. Please look into advocacy on your friend's behalf. It would not be inappropriate to flag up to your friend's local hospice, in confidence, the fact that she is not adequately supported at home.
Please PM me if you need my support in any way; I may be able to help on the hospice front, if only to ask the relevant questions from support staff at my hospice who deliver care to me.
Good morning lovely, sounds like you had a long day from the dentist and I hope it went well and you’re not in too much pain from it... as you’re up in the night too I suspect you are. 😘❤️🙏🏽
Thank you so much for sharing your own experience of your hospice and what should be expected. I know my friend was at St Francis Hospice in Romford for a short while earlier this year but was returned home as the short stay was apparently to assess her medical needs. She has a care coordinator and a district nurse who visits her. As far as I know the care coordinator Lesley is fully aware of the situation as I’ve spoken to her on the phone to see what can be done. The fact that my friend doesn’t want to go to the hospice ( at the time) makes things difficult and in March when she was literally left on her own in the back room of the house with two elderly parents who have dementia and only 3 hours of care. Now she has 7.5 of care and the care coordinator has fast tracked end of care package so hopefully they’ll be able to send her to a hospice... last time I spoke to my friend about the hospice she said that she didn’t want to spend the last days of her life there and would rather be at home.. it’s a difficult situation . She has another friend Sharon who knows about the situation really well and I might call her today and ask what she thinks. She has been in touch with the hospice before as well she may be able to shed some light. I’ve only spoken to the hospice once when they told me that they weren’t taking on anymore patients due to COVID. Thanks again for the trouble of writing and taking time out to think of me. I hope your dentist appointment went well and that you’re as comfortable as you can be. Love, Dalia ❤️😘🙏🏽🌺🌈
Of course, Dalia, you must defer to your friend's wishes. I do think, though, that her brother's and sister-in-law's lack of compassion might change the circumstances. In that instance, advocacy might well be the way forward. Something to possibly monitor and consider so that action might be taken when the time is right.
So much love to you both. Your friend is fortunate to have you fighting her corner ❣️
Hi Dalia, that’s a dreadful situation for your friend, as a retired District Nurse I would suggest you ring her district nurses (you can get their telephone number from her GP practice) and ask them if they could assess the situation, if nothing else they can get her some analgesia to help with the dressing changes but hopefully will also assess the poor social situation she finds herself in? You can talk to them in confidence asking them re-assess if your friend is already on their caseload? Sometimes it’s difficult to know what’s actually happening behind closed doors and a little insight in this case can only help the situation. I really hope you can get your friend some help. X
Just wanted to say ..I feel for you and your friend a virtual hug sent your way. Any helpful suggestions I may have offered have already been given by other people. Take Care x
Hello Dalia, I wish I could give you words of comfort regarding your friend. It's a very, very sad situation anyone could find themselves in. At least your friend knows you care as you visited her and saw the situation she is in. Although she wants to die at home the "home" shes in at the moment cant be very restfull for her. Whatever happens as long as you stay in touch with her she will know there's someone who really cares.
I find your post very upsetting so understand how you must be feeling. Life can be very hard at times.
Families come with their own dynamics, internal problems and issues.
However, a friend is a friend, keep doing what comes naturally to you, in being there for your friend, regardless of what a family member may/might think, feel or say. And take comfort from the fact that your visit, kind gifts, thoughts and efforts, are reciprocated/appreciated by the intended party.
Trusting that your friend, will have peace during this time.
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