Mom has dementia and end stage renal failure. I have so much guilt and anxiety. Help!

My sympathy out to you MsAnxious. I am so very glad you recognize that you did your BEST for your Mom.

My sympathies on the death of your dear mom. Nothing that happened was your fault, and you did the best you could. Peace to you and your family.

So sorry MsAnxious that you have lost your mom but happy that you realized you had done all you could and happy also that now she is free.

I'm sorry for your loss, but happy that a seriously unhappy person is now out of pain.

You'll have a LOT of feels to deal with--be kind to yourself and be aware that you really did do what was best for her. In time that will become your new-'norm'.

((Hugs))

So sorry for your loss, MsAnxious. ((((Hugs))))

So sorry for your loss.

Please, no guilt. Denentia is an awful disease and everything you wrote is what happened with a Dementia mind. Then throw in renal failure. You did whatvwas best for Mom and your family. You did enough. I was the one who could always be made to feel guilty.

When it came to my parents it was always me. I was the oldest and a girl. Two brothers that thanked me for caring for Mom but never did anything. They are the ones who should feel guilty. I refuse to feel guilty. When I start getting that feeling, I push it back. I did everything to the best of my ability. Its not your fault Mom had Dementia, not your fault she had renal failure, not your fault you need to work. Its what it is. She was 90! Lived a long life. If your a believer than u know she is now in a good place.

Update: Today is March 18, 2024. I got a call at 5:55am stating my mother passed away peacefully in her sleep. I am at peace now knowing I did everything I could to help her in her final days on this earth. The only guilt I have now is not visiting her as much as I could’ve, as I was a huge trigger for her. I hope she is free now and knows I loved her dearly, everything I did for her was out of pure love and care and I did everything I could to help her. Please say a little extra prayer today for my 90 year old grandmother, my family and especially my mom! This forum helped me more than any of you will ever know. God bless each and every one of you and your families. I love you mom! You are now free … I’ll take it from here… 💔😔

You could ask hospice nurses if the meds your mom is refusing could be injected. Or if they’re available in liquid form and could be given to her in water or juice. Also Ativan should dissolve in her mouth quickly if you slip it in under her tongue. (Did that with my dad, I think.) Ask. I suppose she won’t tolerate an IV?

Best of luck in a bad situation.

My personal experience is that Hospice is supposed to prevent all the end of life suffering to a patient. They won't continue treatment for her terminal illnesses, with the goal to keep her comfortable and pain free as much as possible. That would also include mentally comfortable, with her anxiety and fear controlled as well.

Like Alva said, she sounds delusional, desperate and scared, and is starting to panic....since she isn't medicated properly. You are NOT wrong for leaving her where she is safe. She should remain under medical supervision, due to her variety of serious issues.

It sounds like she really wants attention, like family members coming constantly. She believes "nobody cares, since nobody is looking for her."

All this drama is very stressful to everyone. Threatening suicide is not to be ignored, yet in this case, she is going to say anything out of desperation to get what she wants. It seems she hasn't accepted the inevitable, and is not going to leave earth without a fight. Hospice needs to know what she is claiming and how scared she is.

End stage people react differently....my Mom was upbeat, with crazy stories (I pretended to believe). My husband was calm and serene...until some struggling at the end for 10 minutes. My best GF was sad and talked favorite memories, with her huge blue eyes closed the last 2 days.

Don't feel guilty! You did not cause her illnesses, you cannot fix old and sick, and have already put much effort into her care.

Some of that is probably because her co2 levels are likely going up. Tell the hospice nurses that she needs comfort meds.

When my mother was in Memory Care Assisted Living (in Colorado) insisting on riding the subway to go home and see her parents and siblings (long deceased) in NYC, I asked hospice to increase her Ativan which helped. Then she refused her meds, forcing the doctor to order them ground up in yoghurt or applesauce, or given to her in liquid form.

Making up stories by elders with dementia is known as Confabuation. They take bits and pieces of truths mixed in with what they hear on tv or others talking about, and come up with quite detailed stories about all sorts of things that sound believable. My mother's stories included wild adventures she was taken on nightly by "her girls" in Memory Care. Parties and dances and shows, along with elaborate dinners.

She "puts this on you" because dementia has made her fully self absorbed, not capable of empathy, and totally unaware of anything and anybody but herself and her own needs.

My mother fell 50x in Memory Care because she forgot that she couldn't walk. Hospice has a bed bolster pillow device that sort of cups the body and prevents them from getting up as easily. I'll bet that puppy warded off 3 dozen MORE falls mom would've had w/o it. Ask your hospice nurse about putting one on her bed. They also brought my mother a high backed wheelchair that tipped back.....preventing as many falls from the wheelchair.

My mother threatened to kill herself regularly in AL and in MC, just to get a rise out of me. I called her bluff every time because I was sick and tired of it, to be honest. "Running out in traffic" wasn't happening, and "jumping out the window" from the first floor wouldn't do the trick either, nor would "shooting herself" since she didn't own a gun. Don't play that game. She can be miserable if she'd like, you can send in the hospice chaplain to pray with her. I had the Catholic priest come by moms room too.

As far as guilt goes, ditch it. You didn't create this issue, old age did. You have ENOUGH sadness and anxiety to deal with as it is w/o telling yourself you're doing something wrong TOO! You're not. Dying is a difficult process nobody wants to experience or witness. Dementia prevents any rational behavior from helping the elder cope, which elevates YOUR stress to the nth level. I know, I've been thru the situation myself. The one thing I refused to do was blame MYSELF for anything. For well over 10 years I did everything in my power to keep my parents well cared for in AL and loved by me. The rest was in God's hands, as it is with your mother. Give yourself some Grace and relaxation time during this difficult end of life period of time.

I was incredibly relieved when mom finally passed at 95, after 6 years of suffering with the cruel ravages of dementia. I was and am happy she's now at perfect peace with no health issues whatsoever to plague her.

Best of luck to you.

Your mother is in an Alf thst takes hospice. That’s where she needs to stay. I would consult your hospice as to up her meds.

Your mother is very ill.
Your mother is very confused.
Your mother is very terrified.
Your mother is very desperate.
Your mother is not adequately medicated.
I can't know where dialysis is in all this, but if she is getting it, then I would suspect her urine is regularly tested for UTI. If she is not, the toxins are building.
She clearly has qualified for and got end of life care, and it is now recognized that she is dying.


You didn't cause this.
You can't fix this. (neither can anyone else)
There is no guilt without causation, and you need to change your words you tell your own brain, because words have great power. What you feel is the OTHER G-word, which is grief.
Is this death, ill, in pain, confused and terrified not worth grieving?

You need to insist on adequate medication for your mother, who is currently in Hospice and having end of life care. I cannot believe she still qualifies in this state for ALF. She likely needs SNF care with hospice at this point, or in facility hospice.
The mission of hospice is to medicate and give comfort care to the dying in order to hold off pain, misery, fear, desperation, and confusion.

It is time to INSIST upon adequate medication for your mother.
THAT is your mission and your responsibility.

Your mother cannot help the confusion and desperation and terror and wrong thinking flooding her body now. She is filled with toxins added to her underlying dementia. She is no longer clear nor responsible for anything she says.
You need to face this with honesty and tell your mother she is safe, she is someplace where she can get care, and you will continue to do what you can to insure her safety and care.

Ultimately, I am so sorry. You are witness honestly to TORTURE. To the lack of relief of a mind undergoing destruction.

PLEASE speak with hospice now and ask for adequate medication for your dying mother so that her final exit from life does not continue to be this whirling crucible of confusion. She deserves peace, and I say that even if strong medications speed her death by some moments, hours, even days.

It's time to leave behind your "feelings" and to move into your MOTHER'S care. GET HER RELIEF no matter how loud you must scream or how hard you must kick for it. She doesn't deserve this confused desperation. She needs the relief of medication. Her body is beset.

I am so sorry for what you stand witness to. But make no mistake. YOU CANNOT FIX THIS. You didn't cause this. You are guilty of nothing but being a desperate daughter who cannot find relief for your mother.

I am an old RN. Were I your mother's daughter and her POA I would now stop all dialysis. I would insist on medications below the level of dreaming. I would pray for the end for your Mom in her torment. I am 81. I would hope my 62 year old daughter would do the same for me.

Its probably the toxins being released into her system that is probably causing her to say and do what she is. You need to let it roll off your back. Exceptvitvfor what it is. Is she getting anxiety meds? If not, maybe she needs them.

Definitely have her tested for a UTI, as that can cause everything you're describing.
If that comes back negative(and don't just trust the dip stick, but wait for the culture to come back)then it's time to talk to her doctor about these hallucinations that she's having. There are several medications out there that should help keep her more calm.
And like Geaton said below, when an elderly person with dementia start wanting to go home, it is typically the home where they grew up in with their parents, and they long for that feeling of safety and security that those years brought.
Best wishes in getting your mom on the right medications to keep her more calm.

If your Mom has dementia, then wanting to "go home" is called Sundowning -- a very common dementia behavior. The home she is referring to is her childhood home, not her most recent home.

My 100-year old Aunt with advanced dementia got up out of her chair every afternoon to go home, even though she was sitting in the home she built herself in 1975. She couldn't walk unassisted and one night she shimmied around the barriers we put around her bed and got up to walk and fell and broke her hip. She passed in her sleep while in rehab.

I agree with 97yroldmom's suggestions to you. If she is in hospice then she needs to be made physically comfortable. Maybe talk with a palliative care doctor for this.

She won't be any happier or safer in whatever home she's referring to...I'm so sorry you're going through this.

Thank you for your story, Ms anxious, you have been though the ringer. This forum is filled with story after story, it helps to hear other stories and realize your not alone.

Hello MsAnxious
I am glad you have found this forum. Hopefully you will find some support for these trying times you are experiencing with your mom.
Mom sounds just miserable so I can certainly understand how difficult it must be when you visit.
Have you spoken with the staff to see if mom is as stressed when you are not there as she is while you are with her? Sometimes a sympathetic family member can trigger these fears of abandonment. How long has she been on hospice? Have you spoken with her nurse about these symptoms? Perhaps her meds need an adjustment? She certainly doesn’t sound comfortable.

Has mom been tested for a UTI? UTI’s can cause dementia like symptoms to worsen. Even though curative treatments aren’t sought when on hospice, any sign of discomfort should be addressed.

I have had a family member on dialysis and when on hospice and coming off of dialysis, she was confused at times. But she seemed very comfortable. She did not have dementia.

If I were you I would call the hospice nurse and ask her to see if moms meds could be adjusted.

I hope you have some support while you are going through this difficult time with your mom. Take extreme care of yourself. I think you and mom both will feel better when you insist her meds be adjusted to give her comfort from these hallucinations that are causing her so much stress.