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?
Understand that with dementia they lose all of their social filters. It is not intentional what they say and do. They cannot control their minds any longer. The worst thing you can do is try to reason or explain to them. You will be fighting a losing battle that will only increase your frustration and mom's agitation.
I remember about three years ago attending a group meeting for caregivers for the first time. I was so stressed at blame and harshness of treatment you describe that I cried in front of strangers which I didn't expect. Going to support group meetings and hearing others experiences helped me to cope and become educated about what to expect. It's a hard situation.
My mom has been gone for almost two years -- the same amount of time my dad's been gone. It's just that she's still here.
You have been ushered into a horrible position without having had the time for yourself to process the devastation of what has become of your family constellation.
Whatever events caused you to regard your sister as “her favorite” are now totally off the table, because your mother no longer has the capacity to deal in anyway with her emotional reactions to EITHER of you. Are you and your sister able to communicate reasonably outside of your home? Are you able to discuss your feelings with her, or someone else, without concern that your own feelings will be criticized?
It MAY be of some help to you at some point to learn some things about the science and dynamics of dementia, but for right now, it seems from what you’ve said that you didn’t have too much control over being designated as her caregiver. Is your father willing to provide time everyday for you to get away from your care giving chores?
Towards that result, you might want to try a couple techniques when you deal directly with your mother. You have already learned that it is rarely successful to challenge the verbalizations of anyone, relative or not, who has been diagnosed with dementia. As you read questions and answers from others who post here, you will find that this simple but often difficult to use technique is basic. If she is insistent, make some neutral comment (“That’s interesting!”) and move on to another topic.
If you refer to her as “Mom” and she reacts negatively, ask quietly “What do you prefer me to call you?”.
Bear in mind, doing this is for your own comfort, not to “help” Mom. When questions hurt you, answer in a non-challenging way- “I’ll go home in a little while“. Sometimes, people turn on caregivers whom they love very much, with no reason. It happened during the tragedy of my grandmother’s illness, lasted for several months, then went away.
Your mother CANNOT reason. She no longer is in possession of that skill. You have the intelligence and wisdom to consider her, and your relationship as her caregiver, in a different way, that can hopefully allow you a more comfortable way to move forward.
If you need changes to be made in your role, please attempt to consider coming up with some ideas that will be safe and comfortable for both your mother and yourself. She is now a victim, suffering from a situation that no one can cure for her. You are in a difficult to manage situation as well, but resources exist that may help you move forward in a more productive way for yourself.
Know that there is understanding and support here for you.
My dad brought his mother, who had Alzheimers, home to live with us when I was younger. She did not know any of her children, not even her baby boy that was living in the home with her, but she knew me. It shocked us all. That is how their brain works. My dad did not take it personal.
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.
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.
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.
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.
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.
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.
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.