Hello, My 85 year old mom and I have always been extremely close. My mom is my best friend and she is my heart. Her health has been deteriorating over the last year. As of today she is so sick, she doesn't eat or drink because she throws it back up. Her legs are so swollen she can't walk and she sleeps constantly. I think she may be at the end stage of life. I am the only sibling who has ever been by her side, even through the disrespect, and horrible things she would say to me quite frequently. She specifically told she wants to stay in the house and No doctors or anyone is allowed in the house. I can see she is in alot of pain.But I am following her wishes and doing what she told me. I go over there daily as long as I can. But I am unable to stay the whole day as I have health issues myself. I was wondering what does a person do when a parent is like this. Absolutely no one in the house and No hospital or doctors at all. She wants to pass in the house. I cry alot. I am so sad because we no longer have 2 to 3 and 4 hours of conversation, sometimes more. Is there anyone who can give Some advice on this matter. Thank you very much!
I don't think you'll be able to live with yourself if you let her suffer up to the end. I know I wouldn't be able to.
You must now do what is in the best interest of your mom despite what she has said in the past.
I pray that your mom is not living by herself right now and that you have other family members staying with her when you can't be there, as she shouldn't be alone.
Hospice will allow her to stay at home and die at home as long as someone is with her 24/7. they will have a nurse come once a week to start and aides to come bathe her at least twice week, along with supplying all needed equipment, supplies and medications all covered 100% under your moms Medicare.
So PLEASE I'm begging you, call hospice right now and they will come out and do an assessment, and get your mom under their care ASAP.
And if needed hospice can take your mom to their hospice home when she's actively dying, which is not a hospital but a beautiful, peaceful home where she will receive excellent 24/7 care and be able to die in peace. And again it will be covered 100% under your mom Medicare.
Your mother has placed a terrible burden on you with her unreasonable demands. Also, allowing her to suffer could be considered elder neglect. There are penalties for that.
Be the grownup and act like one. You have a moral responsibility that outweighs what your mother has ordered you to do, and I wish you peace in taking care of her - not as she wishes, but as you should.
If Mom qualifies she can have hospice in her home. That will get her pain meds and also Lasix to help with the swelling in her legs.
Tell Mom if she wants to pass in her home that she needs to see the hospice RN in her home.
For over a year we had the hospice RN come out only once a week. (not intrusive) The last 4 months the hospice RN's came out MOn, WEd and Fri
You standing by and following such inhumane "orders" from someone in such dire straights is also wrong.
PLEASE DO THE RIGHT THING.
I would all APS tomorrow, Adult Protective Services to see about your mother and to do a "wellness check" on her.
Now you have ALSO the option of saying "This is what my mother wants. She understands that she is dying and she wishes to do it in her own home without medical assistance." That is an option most people will tell you is "wrong". But if this is your mother's wish, if your mother is rational and understands that she may DIE of something that can be treated medically, then you may have to make this choice for yourself.
Your mother is apparently not/never was a cooperative person, nor a very satisfied person. She has asked to be allowed to die in her own home. I have a neighbor two doors over who did just exactly this, telling her daughter not to call medics. She did die at home.
We all will die. Your mother has had a long life. She seems ready to make her own exit in her own way. On the other hand she sounds to be in need of medical treatment that may give her some short time more with treatment.
I am afraid this isn't a decision I would make for you. I once would have told you in no uncertain terms to call paramedics or APS. At 82 I begin to feel somewhat differently about it as I more approach the end of my own life, and end I won't honestly be terribly sad to see come. There isn't a lot of "upside" ahead.
My thoughts: It's unnecessary suffering, even if she does want to pass away in her own home. She can be treated for the acute issues and pain and come back home with hospice in place.
Because hospice requires 24/7 care, mom HAD to accept the fact that I couldn’t provide it all myself, as I had a home, family and job. But hiring someone to come in against her wishes was one of the hardest things I ever had to do. Luckily, mom built a good relationship with the first caregiver, and I was able to bring in more help over time.
My mom passed away almost 7 months ago. I do not regret for one moment making the decision, against her wishes, to bring in help. Mom got to die at home the way she wanted to. She was clean, well fed, had proper medication and did not suffer (beyond the inevitable suffering that comes with a fatal illness). I was lucky enough to be by her side when she actually died.
I she was in hospice for over six months. I couldn’t have done it alone. Things would have been much worse for her had I tried. I’m sorry for what you are going through, and I wish you the best.
Call hospice and get an RN out to the house or call 911 and they will take her to the emergency room. If she does not want treatment to extend her life calling hospice is might be the better choice.
Please call hospice or 911. It is the humane thing to do and will get her access to pain meds.
They will evaluate her along with talking to her doctor.
The Nurse will make sure she is comfortable. the Nurse will also order any equipment and medical supplies that you will need.
A CNA will be assigned and the CNA will give m om a bath, shower or a bed bath if that is necessary. And the CNA will order all the personal supplies that you will need.
More important they will reassure you and mom that her comfort is priority.
they will give you both emotional support.
Unless it is medically unsafe mom can remain at home.
The Hospice Nurse will take care of everything when mom dies, they will make the call to the funeral home. (If you have one chosen let them know on their first visit so they have that information.)
((hugs))
We had hospice in the home from October of 2022 - April 2023.
In my county you are not required to have others in the house at all times. Mom lived in a poor county and family members have to work jobs.
Most of the time we had an RN visit once a week. The RN also called in Mom's meds as needed and they were delivered to the house by the pharmacy. We had the option of CNA nurses once or twice a week to bathe Mom. We declined this as we had someone else to bathe Mom.
A social worker and the Chaplain would call me once a month and see if I wanted them to come out. If I wanted both once a month they would stop by the house once a month but
usually I told them we were okay.
The last three months the RN came out on Mon, Wed and Fri as Mom was declining.
The RN would also bring out free home care supplies: lotions, adult diapers, chux (pads)
etc for free on each visit.
I never had to be present when the RN came out in fact most of the time I was not on site.
In my region of the US there is only one hospice. They cover 4 counties. At the time Mom was enrolled they had 260 clients in home hospice. The last 8 days of Mom's life I moved her to the physical hospice building mainly due to family dynamics as a unmedicated mentally ill sibling was coming to town. If I did not have the mentally ill sibling I would have kept Mom in home hospice.
It was interesting that physical hospice only had around 3 or 4 clients staying there. The vast majority of 260 clients were in their home.
Hospice was respectful and not intrusive and they also supply pain medication.
Please call them.
Can you tell her you want to get her some pain meds and you will have a visiting RN from hospice stop by who can help with pain meds?
If you love your mum, give her what she needs, not what she once thought she wanted.
You wouldn't leave a young child in pain just because they didn't like the doctor. The young child wouldn't understand, and neither does your mum now.
Your mum needs medication to help her have a pain-free, peaceful passing. So, you will need to bring in health care professionals to help your mum with end of life care.
In the UK, your mum would be put onto palliative care, with daily visits from district nurses to administer the strong medication (through a syringe driver) that a doctor had prescribed. All equipment would be delivered - Mum even had a hospital bed and air mattress in her bedroom for her last weeks of life. A pair of carers came in 4 times a day to assist with Mum's daily care needs.
I think, from what I've read on this forum, that there is something similar in the US, which is called hospice (that is the name for a specific place for end of life care in the UK).
This is what your mum needs.
If it were me, I would give the mother I love what she needs, rather than what she once wanted.
My advice to you is to get into therapy. You need a therapist to sort out how you feel and learn to value and love yourself.
You do what is required for her welfare.
You do not ask her although if you do not have any legal authority, she can do what she wants.
There is no value to her to live in pain and misery.
"Most" people / family want a loved one to live for their benefit. (While this is understandable - wanting a loved one to live for as long as they can, the family member(s) do not consider how it feels to the person who is in pain, exhausted, depressed - had enough. What do THEY want? They want to let go.
If you decide to abide by her wishes (no medical support/medication), then focus on yourself. Yes, it is a grieving time. This is expected and very natural. It sounds like you have had an unhealthy attachment to your mother and therapy will help you sort this out for your well being.
It is not easy and likely a life-time pattern of behavior.
None of this is easy. It hurts, it is painful. The key is to get it out and learn to value and love yourself.
Gena / Touch Matters