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I have been caring for my mother (94) for the past 3 years mostly as she was recovering from a new hip replacement - but over the last month has had an ongoing heart failure issue which had been diagnosed when she had her hip done.
She was again admitted to hospital with breathlessness and edema in both legs and lungs and as a result was sent home with a care package who tend just to her personal hygiene needs. She has over the last week lost interest in eating and drinking and despite having liquid morphine and fentanyl prescribed is in constant pain.
She has a visit twice a week also from the district nurse who actually turned up un announced yesterday as she had been told by another nurse that I looked tired and unwell - she also asked me about getting my mum into a hospice which I did try and discuss with her but she wasn't having any of it.
She has this fixed stare in her eyes during the very few lucid moments and constantly babble unintelligibly in between very long bouts of sleep.
I have tried to give her a small glass of water which she sips very little and I am now so worried that I cannot give her the end of life care (medically) that she so wants.


I look forward to any kind of response as I am on my own and feel rather alone - thanks

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Thanks Veronica - I think I will stay for a while - still quite raw !

Thanks cwillie
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I'm so sorry for your loss, I'm glad you were able to get her appropriate care for her final journey.
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Micky so sorry for your loss this morning. i hope you now understand the reasons why the treatment given to Mum , especially about no artificial feeding was the right way to go. At the end of life as the organs are shutting down it just puts another burden on the body and more discomfort.
For others faced with pain control for a loved one fentynal given a a patch which is effective for 72 hours with morphine available for what is called break through pain is standard practice at the end of life. The doses start very small and are gradually increased till the pain is well controlled,
Many people also choose not to mention hospice to their loved ones, just calling the organization visiting nurses.
You have provided excellent loving care for your Mum so can be proud of yourself. Nothing to feel guilty about. she recieved good care and was kept comfortable during her final days and has now joined all those who have gone before. Be peaceful and rest.
You are welcome to stay on this forum even though Mum has passed. You will have things to share with other caregivers and can share your feelings and emotions. Chances are that many others will have shared your situation and will relate with good advice and suggestions. It is hard to do this alone.
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Just wanted to say thanks to all who gave me great advice and comments (see my thread Any advice on getting mom to accept end of life care?) - it meant the world to me and now my Mom has passed this morning I feel an uneasy sense of relief as I was a carer for her for 3 years -

Thanks all again and may this forum go from strength to strength

MickC
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mickyc444: Okay, good.
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Thanks again to all who have posted:
Llamalover: I too was astonished and questioned them relentlessly about the interaction between Fentanyl and morphine and was re-assured by the heart specialist team that as both were very low doses then it was ok to administer - I didnt want to administer the 2 myself which was another good reason to seek 24hr care
Arleeda : I guess people are different we had spoke about not putting her in a home for years prior to her condition - but I think now she reluctantly accepts even though she views me with a suspicious eye every time I come and visit.
Johnnym1964: She is also very malnourished so I will be meeting the team today to discuss any alternatives as she refuses to eat anything? And If she passes through Heart Failure then thats different to die from starvation - I am a bit concerned they havent yet tried an alternative method?

All others who have posted a message to me I really thank you all - its good to know I am not alone and I wish all the best in their own issues :-)
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mickyc444: Good grief, she was given fentanyl? Please, I URGE YOU-THAT COULD BE DEEMED A MEDICAL EMERGENCY AND IS A HIGHLY DANGEROUS MED! PEOPLE HAVE DIED FROM THIS DRUG!!!! PLEASE BE VERY CAUTIOUS!
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She is malnurished, my mom was the same way. Get her on nose feeding tube . Just for a few months. It bright my mom out of the staring and babbling. She had a hernia in her stomach and congestive heart failure. But I'd doing much better.
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Sending hugs as I know this must be an extremely trying time for you
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mickyc444, I am glad to hear you finally found how to place your mum into 24/7 care.
now you have to try to take care of you - without guilt - for doing what was necessary.
praying for you hon.
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It seems strange to me that at her age your mom would not welcome hospice care. My husband was only 71, but after major stroke that left him unable to walk or eat, and with a loss of central vision, he welcomed the idea of hospice and comfort care and died within 3 weeks.
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P.S. Forgive, I missed the update!
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Just do it...if she ever asks about it, just say YOU required extra support.
She doesn't sound like she will be able to put up a fight about it....
All the best to you and mum!
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Thanks cdnreader means a lot to have many people offering me there wishes - unfortunately I don't have any family or friends helping but hey Im big and old enough to get through this !!

Thanks again

MickyC
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Dear mickyc,

Thinking of you and your mom. I know how hard it is to see our parents when their health is declining. I too felt so alone. I'm glad she has the care she needs. I hope some trusted friends and family are supporting you during this difficult time. Sending you hugs.
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Thanks Tothill - I'm still as worried - its not the break for myself I'm bothered about - just so long as she gets the care she deserves :-)
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MickyC,

It is good to hear that she is in a home. It is better to hear that you are getting a break from caring. I know you have not stopped caring, but hopefully you can take care of yourself now too.
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Thanks BarbBrooklyn :-)
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Mickey, I'm so glad mom is getting better pain relief and care now.

Yes, guilt comes with the end of life territory; somehow, we all see to think if we'd just pedal hard enough, our parents won't get ill or be in pain.
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I thought I would just post a PS to my original post - My Mum has now been admitted into a "home" that has Enhanced Bed Care courtesy of a dedicated team of Macmillan nurses - she has taken a little time to settle (which is understandable) but now has the 24hr care she deserves without me bumbling about with spoons of Oramorph when she is in pain - I feel a bit guilty but I often read that this comes with the territory !
Anyway I just wanted again to thank all who responded :-)

Thanks MickyC
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Grammyteacher- I do have carers throughout the day but nightime its just me - I am also waiting for an appointment at the hospital for a kidney ureteroscopy !!! although the district nurse has said with enough notice they will sit with her.....
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cwillie - Im not actually a fan of the NHS system here in the UK - The doctors in front of her said "its only a matter of time ...I think a few weeks" nice to tell her that when all I thought was that they were just going to get rid of the oedemas !! - end of life directives that I am aware of......

Counrtymouse - thanks - I might just PM you later .....I have support from a care team who come 3 times a day to change her and make her comfortable but this has recently become an unwanted niggle for her as she is in a lot a pain.....
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Could your mom afford a part-time caregiver to come in and give you some respite? My mom has hospice care, but it is at home hospice as she lives with me. They send a CNA to bathe (bed bath) her twice a week and a nurse comes once a week to check on her. I do everything else, but I am lucky to have the support of my husband and adult daughters.
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Micky, call your GP and get advice. Your district nurses sound as though they're already keeping an eye on you, plus they can get you additional support from organisations like Marie Curie - I know your mother doesn't have cancer but they also provide more general end of life care support.

I'm in the UK too - feel free to post a private message on my profile page if there's anything I can help with. Hold tight, hugs.
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Micky, what exactly have her doctors told you? You say "thats why they sent her home I suppose to die?" Is that her prognosis, or is that just an assumption based on her alarming change in status? This isn't a time to try to guess what is happening, you need to demand concrete answers in order to make rational choices. Does she have any end of life directives that can guide you?
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Oh just a ps - I did try and "sell" the hospice as a break for a week or two for both of us - but she adamantly disagreed ....
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Thanks both for your replies - the thing is she had to go into hospital originally just over Christmas and that didn't bode well as she suffered from Hospital Delirium and didnt eat or drink and lost so much weight thats why they sent her home I suppose to die? - Never mind thanks again and many apologies for my rather disjointed first post :-)
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Can you call an ambulance or emergency services for her mostly unresponsive state? Have them take her to hospital where she will be evaluated and (hopefully) released into hospice.

My father was in a similar situtation and, as cwillie mentioned, the paramedics avoided words he didn’t want to hear. He did not want to go to the hospital but was ok with them “taking him to get him checked out.” At the hospital he wasn’t hearing hospice but was referred to a place that “specialized in the care he required.”

Caregiving is difficult. End of life caregiving is mostly terrifying for those not trained or well-versed in it (me!) Assuring she gets the end of life care she wants is the best thing you can do for her and you.
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It's unfortunate your question is so vague, it makes it easy to overlook.
I'm guessing that you are in the UK based on your spelling so there are not many here who can offer advice about navigating your medical system. Is she really still able to choose at this point? Contact the appropriate agency and tell them you can. not. care. for her!! then make the arrangements to get her into the hospice facility. I would suggest that you don't use the word hospice but instead tell your poor mother that you can't possibly care for her properly so she will be going to a facility where there are people who can. Your feelings and needs matter too. And I'm sorry ((hugs))
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