I know Alzheimer's is one of the worst things a family can live through, being alone through it all as I care for my mom is so difficult. My dad does nothing. I'm 37 and mom no longer knows who I am, my name or why I'm living in the house. How do I deal with this? The pain is so strong, the anger to. How can she remember my sister (her favorite) so well and on the other hand not remember me at all? Today she was yelling at me I'm not her daughter, and that a stranger can't help her. When I ask her if she knows my name she doesn't. She constantly asks when I'm leaving and who my mom is. She gives me evil looks when I call her mom but I've never called her anything else. It's been almost 2 years now since she "lost me" in her memory. It's like alzheimers has taken every bit of my life from her but my sister is still there. I cry a lot when she talks about my sister her "daughter" and then asks me when I'm going home because I dont live here. The pain is like half my body and soul ripped away and then that leads to anger. If she doesn't know me as a daughter do I have to see her as my mom anymore? All that was my mom is gone. How do I cope with this?
But, she remembers my sister who visits once or twice a week.
It's the most horrifying feeling in the world. It makes me feel angry and resentful, even though I am aware that it is the disease.
The only thing that helps is participating on the Alzheimer's Dementia Caregiver's FB Support Group, where we all are able to vent without judgment.
Tell her that you are there to visit her. After a different subject she will have forgotten what she said earlier. She may not remember you but she will talk to you nicely. But I do understand how you are feeling. Remember she loves all her children even if she does not remember. Good Luck.
Please be careful of dad. He is lost too. Just know you are not the only one in your family who is hurting. My mother forgot my name. She called her sister's name. THAT WAS THE LAST TIME SHE TALKED.
This disease has no boundaries.
Just know this. That is hard to do, but it's true. When I corrected her, that she did not say my name, she stopped talking.. PERIOD.
THIS FREAKING DISEASE HAS NO BOUNDARIES...
My advice is: Do Not Correct Her. she doesn't know, and at the end of it all, it doesn't matter. LOVE MATTERS. and YOU NEED TO FORGIVE. Forgive, yourself, forgive your mom, forgive your dad ( your poor dad and mom, without them, you would not be you) tough as that sounds, and to be forgiven, you must accept the guilt or cause, or whatever. They cannot forgive you, if you do not apologize.
I am so sorry mom, I love you. I am sorry sorry Dad, I am here for you too, and I love you.
Your sister may be the "favorite", and it seems to be in most families, said, or unsaid, we all know, there is a favorite. There was a favorite. Why? because #1 child wasn't protected, but #2 was.. and so it was. #1 was first and "experimental in a way. They didn't know what they were doing, so the mom didn't know she should put up her wings and PROTECT. #2 would speak to her with "tapping", and mom understood. Kinda like sign language ie, morse code.
#3 came around, and Mom loved all of us, but #2 had to be protected. (middle child syndrome,? no, I don't think so.( #3 came about 5 years later. )- They had a special bond)
I lost all of them too soon...
DO NOT TAKE THIS PERSONALLY.. That just hurts.. And your mother doesn't want to hurt anyone. Take your position, and protect you, your mom, your dad, your sister, ESPECIALLY MOM... Play music, gather the family around mom when you can, make it a happy joyful moment or party. HONESTLY.
Do yourself a favor, put away those bad thoughts, your mom loves everyone of her pups... AND YOUR DAD TOO.
I have not read any posts, which I do a lot, but if your parents are still married, he misses her and he may just be frozen.
I'm so sorry for your pain!!
A couple things come to mind.
1) The sooner you can understand that the mother you used to know and love is no longer there the better. Alzheimer's robs them of their memories. It's not personal, it's Alzheimer's!
2) Seek counseling!!!
Maybe someone who deals with caregivers. It's a great start coming here!! You'll get lots of helpful advice, but there is a deeper healing that comes from a one on one relationship with a counselor.
Again, it's not personal it's Alzheimer's.
Take care of yourself!!
God bless!!
I, too, have a LO with Alzheimer's, a sister in law. Three years into the disease, she called her own sisters (there are 4) her "cousins" and her "niece" and even went as far as asking her husband if he knew her cousins, "Mary" and "Diane." That was hurtful to them, but they understand it was the disease talking. But Cathy is happy, likes to watch game shows and baseball, which is a real blessing to us.
My mother still knew all of us when we moved her to MC. Great-grandson, not so much. He came along about the time dementia kicked in, and didn't see too much of him, so he's not really a memory for her. So, 9 months after the move, she wants me to drop her off at her mother's on my way home... She has been gone 40+ years! Quick thinking and a fib, we got past that (and have had to come up with others.) Based on a later conversation about her youngest sister (she brought it up), mom is definitely still living about 40+ years ago. There are occasional glimmers of more recent things, but those are random and fairly rare. I think maybe because I was an adult then, she still "recognizes" me - bit older, but still me!
She did keep going through pix of dad and some siblings of hers for a while after the move (and knew they were all gone), so they were still "fresh", and she would often ask about one or the other of my brothera, but she stopped asking many months ago. OB is not local, so it's been over 2 years since he visited. Her hearing is really bad, so we didn't set her up with a phone. She can't do computery stuff, so no "smart" phone or tablet to contact with. YB does now take her (with MAJOR reluctance) 4x/year to an eye treatment, so once in a while her memory might get "jogged." He didn't really visit, so these "trips" were the only memory jog.
Before lock down, she still knew me - name, face, could id me from across the room, but haven't been there since Mar 16th... will be interesting to see if she still knows me...
Clearly the mom you knew isn't there. Don't take what she says and does personally. That isn't your REAL mom talking, it's the dementia! So, although having some therapy might help you, here are some suggestions for "going with the flow":
1) Don't focus on who you are. That Robin doesn't exist for her now.
2) Wear a name tag instead of asking her what your name is.
3) She considers you a stranger, but remembers your sister - tell her you are the sister's friend, who was asked to come and help as sister couldn't be there.
4) Since you are going to now be the "aide", work on referring to her by her name or Mrs. X. You'll be the hired or friend help, so you can't call her mom!
5) If/when she asks who your mom is, is there anyone else she still recalls, maybe someone from the past? Use that name.
6) If/when she asks when you're leaving, make up something - after dinner, when my ride arrives, anything.
You need to kind of live in her "world", play along, don't argue, don't correct, just go with the flow... It is hard, but it gets a bit easier with time and practice. I promise you your nose won't grow! I can't tell you how many fibs I have had to come up with, often on the fly! Lies are told to hurt people or CYA. Fibs are to protect in a case like this. Whatever works to assuage their anxiety and satisfy their needs, go with it!
Work on that alternate persona for yourself. Even if you use the name Robin, it might job something and lead to discussion about her "other" daughter!
Hopefully you do have outside activity - a job, places you can go to unwind, etc. Take a break when you can. If she naps or retires early, find an outlet for yourself. You are rather young to be "tied" down to this, and it would not be good for you to not have employment to save for your own future.
Final thought - you know who she is.
Teepa Snow and Rachel Wonderlin are two dementia teachers with ideas on how to communicate with dementia patients and both are on the internet, Try their ideas.
I had to just wipe out any of my thoughts, hurt, etc and get into her life. It is the only way to survive. Remember it is not because the real person inside her heart doesn't love you, she does. Her brain thinks you are someone else. Some days she screamed and carried on asking for the real Maryle.
Continue on with a smile in your heart and face. If she doesn't like you calling her Mom, just tell her you think of her as Mom and you are there to help her. Play along with her and it is better. One day my Mom shocked me, she said, "I don't know why, but I have loved you from the first day I met you." But didn't know who I was. Just love her and live in the changed life her brain has her in.
My grandfather forgot who his wife, my grandmother, was. They had a very long history together of courting, marrying, raising a family, grandchildren... and yet the details all got lost with the disease. He saw her as the nice lady who cared for him. He didn't get "the nasties" as some dementia patients do - where they are afraid and lash out. It appears that your mom may have a touch of it; I am sorry for your pain.
That being said, I agree with getting some counselling to resolve your pain. I also suggest you consider creating a life "after mom" or "other than mom" since your needs are just as important as your parents.
Sound tough, Yes, but you do not need to go through this alone. Mom did not have Alzheimer's, but advanced Demenita. and it too was extremely hurtful. My primary care doctor said "I want you to see a therapist", gave me some referrals and said I should not wait. Best thing I have ever done for myself.
Don't carry this any farther alone. See someone -- unloading verbally will help you a lot. Just the acct of sharing with that "third person" who has no vested interest in anything but helping you heal the hurts, is a wonderful experience. Will it change what has happened, NO, but it will help you heal.
If you are not on social assistance, you need to get your own life. Fast. How do you cope? You just have to. Your mother is gone. Her body is alive, but who she was is gone. Since you are only 37 years old, you really need to try to forge your own life. Work for a living, maybe get into a new relationship..get married. But don't be chained to your parents because caregiving over the years will totally destroy you. If your father can't cope then he needs to put your mom in a memory care facility. But you will have to live your own life..the older you get the more difficult this will become. Your father is probably 60s--he's old enough to care for his wife. Remember the years you are not working will impact your future social security--if you can get any at all.
My mom died nearly a year ago and I'm 60. All by myself. Years and years of caregiving really damaged my life beyond repair. The bills keep on coming in no matter what happens to you so imagine getting a job and "starting over" at my age. Yes it was a terrible ordeal. Did it but I don't advise anybody to do caregiving.
Caregiving can take YEARS to recover after your loved one dies.