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
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))
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.
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.
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.....
Anyway I just wanted again to thank all who responded :-)
Thanks MickyC
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.
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.
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.
Thanks again
MickyC
She doesn't sound like she will be able to put up a fight about it....
All the best to you and mum!
now you have to try to take care of you - without guilt - for doing what was necessary.
praying for you hon.
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 :-)
Thanks all again and may this forum go from strength to strength
MickC
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.
Thanks cwillie