Hi! I am new here and looking for guidance, advice and/or support. My mom has dementia (between stages 5 and 6) and is also struggling with end stage renal failure with GFR numbers at a 5. She is currently on hospice care and living in an assisted living facility. She has recently started stating she “wants to go home”, and has even attempted to get out bed 2 times resulting in her falling right down, as she cannot walk.
Tonight she begged me to take her home, crying out loud and making up stores. Saying they are not allowing her to go home, the nurses are mean to her, the male nurses have all threatened to rape her, and begged and pleaded for me to call 9-1-1. She also stated she saw my daughter and husband walking back and forth in the facility all day but they ignored her, (which was false) no one has “come looking for her” and no one cares that “she is missing from her house” because no one has come looking for her. She has been very confused and talking nonsense for an while now, always making up stories… saying she can walk now, she does physical therapy each day, tried going poop in her bed and wiping herself when she was unaware she had a diaper on, and thought she was on an airplane and left in Arizona, so it’s kind of like the “little boy who cried wolf.”
According to her, everyone at the facility is mean to her, everyone hates her and they continuously yell at her and “refuse to let her go home”. My mom has always been very manipulative, tells family members lies about me and her (stating I never took care of, I put her in a home to get rid of her and I only want her money) granted I am the only one who sees her almost every day, used to drive an hour away when she was in a different home each day when she had her first stroke, and will go buy her anything and everything she needs or wants and asks for. At times, I think it could manipulation but also her stage of dementia and her kidney failure putting toxins in her body causing the confusion and storytelling. She needs an ALF, as I and my family are far too incapable of taking care of her. Tonight she even stated to me that she would “kill herself” if I left her there. That’s where the guilt, anger, unknown and scared feelings entered. Why does she put that on me? Am I wrong for leaving her there? Are these “stories” really “stories”? What if tonight wasn’t just another episode and she really hurts herself or something bad happens to her?
Sorry for the long story, just wanted to give details about my situation to see if anyone else has been through this or is currently going through this?
Thanks in advance 🙂
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.
As far as hospice, she has been been on hospice a month now and is very uncooperative with her hospice nurses and her facility nurses, so that basically is the only information given to me regarding my mom “she refused pills, will not let them check her BP or blood sugar, and will not let them touch her as she is also very hyper sensitive”. I did call the nurses just now and requested her meds be adjusted and hopefully, maybe, she will take them!
Thank you for your kind words. It is definitely draining in all aspects taking care of my mom from the outside and ensuring my mental heath and well being are also being taken care of.
God Bless!
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 again for your response and God Bless.
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.
Thank you again and God Bless.
Thank you for responding and God Bless.
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.
thank you again and God Bless.
Thank you for your response and God Bless.
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.
Thank you again so very much for your words and God Bless !
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.
Best of luck in a bad situation.
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.
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))