My 86 year old Mom has been in and out of hospitals and rehab facilities since early November 2021. 2 years prior, she had so many health challenges: heart stents, removal of part of colon, congestive heart failure and Stage 4/borderline Stage 5 Kidney Failure. Yet, she's come out of each challenge although weaker every time.
In February, she was back at her home, living independently, driving, appeared to be "on the mend." In March, she had shortness of breath, low oxygen and went back into the hospital. Her kidney function was still Stage 4/borderline Stage 5. Oxygen demand very high. There was fluid around her heart. After about 6 days of treatment, doctors approached her about hospice care as an option. She admitted that she did not want to "fight" this anymore so she agreed to go into a very nice, reputable hospice facility. All of her doctors signed off on the paperwork admitting that they thought she had less than 6 months to live.
When she arrived, she was very weak with nausea but relaxed. But, she deteriorated quickly. She's been in hospice care for about 25 days as I post this. What is really frightening is how angry and vicious she has become. She keeps trying to get out of her bed without help. Even though she is on meds for pain and anxiety she is restless all night. My sibling and I have avoided calling her or visiting because she is so mean to us when we are there, accusing us of abandoning her, leaving her to die. She is very lucid but the things she says and does scare us. Visiting her does not seem to comfort her it seems like a trigger for her anger. It's not comforting for us either.
Has anyone been through this and what's the best way to deal with this? The hospice staff where she is at are wonderful so that is not the issue.
Hospice gives you access to clergy if Mom is a person of faith, and to Social Services to provide her with some help. But sometimes nothing works.
You need to visit and put aside your own stress long enough to sit with her and hear what she has to say.
Ask her for details when she says things like "You have abandoned me to die". Ask her if she remembers choosing Hospice. Ask her if she wishes to STAY in hospice or would she rather have continued visits to hospitals and treatment. This is honestly her choice. She may have decided she wants to "fight". Can she "win" against a failing heart pump and kidney disease? No, she can't. But is it her choice whether to accept that or not? Yes it is.
Sit with her. Ask open ended questions so she can tell you what she wants. ASK HER what she wants. Tell her you are not ready to lose her, either. Tell her that you have no answers as to what can be done; that is for discussion with her doctor.
The doctor may have to be brutally blunt that he has done what he can for her. That he can continue to treat her to no avail, or he can help her to remain comfortable for what time she has. She will not take THIS from you; it must come from someone uninvolved.
You Mom is still wanting to fight for life, I believe. I am sorry for that, but it is her choice to make. If she doesn't want Hospice that is something for you, for Social Services, and for the Clergy to ascertain and report to doctor.
I am so sorry. Things don't go like movies and books and fairy tales. The can be messy. Some people never do find "acceptance". My best out to you. This is terribly hard; as a nurse I know this.
We have asked her what she wants and she says she wants to feel better, get stronger and go home. I also asked her if she remembers choosing hospice. She says she does but I think she thought it would be more peaceful for her than what she is experiencing.
She "rallied" for a couple of days and ate normally for those 2 days but since then, has started back on the only a few bites of food a day routine.
Only make one med change at a time, or you won't know what is working.
It could be that your Mum is scared. And acting out due to her fear.
Does she have a Faith leader who could come visit her? Help her accept the transition to death and whatever she believes comes after?
I do not agree with Funky's statement "You certainly don't want to not be with your mother in her final days/weeks as you most likely will have regrets down the road otherwise." The trauma of being around someone who is volatile can be a great burden to overcome while grieving. I have had family members who visited relatives on their deathbed, and family members who have not done so. It was not a measure of their love or caring, it was a measure of their capacity to cope in a challenging time.
If you can seek out counseling. I was surprised to learn that my local Funeral Home offers 24/7 phone counseling for the family and close friends left behind.
A current story in my family. My Uncle is dying, his cancer has spread, the tumours in his lungs are making it hard for him to breathe and to oxygenate his blood. He lives in a big city and his local hospital is huge. He is afraid of going there, has huge anxiety and avoids it.
He is over in my small town visiting his daughter. His breathing got bad and he went to our local hospital by ambulance. He is not afraid, he feels he is getting appropriate care, he likes the staff and is hoping now to die in this community instead of his home in the city.
He is also looking at Medical Assistance in Dying, MaiD.
Why am I telling you this story? We had assumed my Uncle did not like all hospitals, but no, he did not like the big city hospital where he was just a number. Perhaps this is not the right Hospice facility for your Mum. Has anyone asked her what she wants? Now I fully understand that what she wants may not be possible, but maybe she just needs to be heard?
Who has talked to her about her feelings about death? Although it seems obvious, to us that stopping treatment will mean death. Is she really ready to die?
My Uncle has had cancer for 2 years. Yet it is only now that he is in a hospital where he feels cared for and supported, that he is discussing choosing MAiD.
My sibling and I are both in counseling and we have been told not to feel guilty about our lack of visits due to Mom's anger.
Mom keeps saying she wants to go back to a rehab facility and try to recover, get stronger. Then, she says she hopes to go back home. She says she thinks the inactivity is making her weaker as are the meds. The facility she is in does not do anything curative or to extend life. I think my Mom's meds for most of her health issues have been discontinued. She might be on a few of them that help with her comfort.
I think she wants to feel good, stronger and happier before she dies and she is not feeling that way at all.
We kept 40s music playing in moms room all the time too, which she enjoyed hearing. I always sat with her at the end and talked to her a lot too.
Please disregard comments intended to make you feel guilty when all you're trying to do is EASE your mom's passing. This is a difficult time so please be kind and gentle with yourself.
Best of luck
Things changed for me ten days ago when I had a GI scope to help me get to the bottom of the bad stomach problems and weight loss I was experiencing. Turns out I have an ulcer that’s bleeding—and non of the risk factors for ulcer other than trauma/situational stress.
It has been so traumatic watching my parents suffer, the futile task of trying to help them.
i am struggling with the counselor’s recommendation that I take a break from visiting in order to allow my body to heal. My husband is losing patience with me and is angry that I can’t let it go for a bit. I am a nervous wreck either way, when I go it’s so disturbing and when I don’t all I do is feel guilty.
The doctors are starting my mom on a low dose of antipsychotic meds, after trying everything else to help her brain regulate itself emotionally. She may have to be hospitalized this week due to a hunger strike she is on, protesting my dad having affairs with the med techs and staff. He can hardly stand up.
I don’t know what to say but wanted to pass along my counselor’s input. I love my mom so much but her life is literally making me sick and I have a family of my own to care for. We do have to value our lives and health as well.
this disease is terrible. Prayers for you.
This may be a part of her dying process, that she is expressing with anger, as well as physical signs of what is shutting down in her body.
The hospice house sounds lovely...is it based in the same religious faith that your mother practiced as a child or an adult? Religious people might seen suffering as having a redemptive value, or suggest asking a deity for help. Can you sit in on a chaplain visit (out of her sight line) and see what seems to go on? It's a long shot, but I have seen it happen in hospice.
Be gentle with yourself. Her anger is not about you.
This is what the head nurse told us but without a blood test to determine her GFR, how would they know for sure? But, they say they do not do blood tests. They do not even check oxygen level and I was told by my sibling (they are the health care proxy, not me) that I better not ask them to check vitals as it is "wrong" and might give my Mom "false hope."
My sibling has met several times with the MD, RN and Chaplain. They told them that this is all part of the process. But, we are just not able to talk to Mom or visit her when she is in the angry state...which is all of her waking hours that she is not sleeping.
>>>>The hospice house sounds lovely...is it based in the same religious faith that your mother practiced as a child or an adult? >>>
Yes, it is although they accept people of all faiths.
>>>Can you sit in on a chaplain visit (out of her sight line) and see what seems to go on? It's a long shot, but I have seen it happen in hospice. >>>
I like the idea of trying to have the Chaplain visit her right before we visit. Maybe we can stand outside the door while the Chaplain is in there and then come in and the Chaplain can help with the transition from Chaplain to family.
Thank you for your thoughts.
I've gone through this with close family members. It is not easy to watch someone you love to go through this process. It is painful for all involved. If you can't bear to go through this, take a step back. You can call and check on her periodically.
You certainly don't want to not be with your mother in her final days/weeks as you most likely will have regrets down the road otherwise. So speak to her hospice team today and see what can be done to help this situation, as they are there to help your mother have a peaceful transition from this world to the next, and the medications they administer are not meant for everyone, nor do they agree with everyone.
I wish you and your mother peace during this journey.