People who love my Mom and see her infrequently do not see the changes. They are not here 24/7 to see what it is like- what she is like. A friend of my mother’s wrote this to me in December:
Thanks for your email. I am glad to hear from you. “Your Mom” and I had a wonderful time.!! She was completely normal, heard almost everything I said,and we had fun !! The food was great,too. Your Dad seemed fine when I visited with him...... ?? That place sounds great, but I don't think they are ready...they like being with you sooo much.. they both brag about you, and are delighted with their living arrangements, and think it's perfect. It reminds me of the Amish, who never stuff their parents in a nursing home. They build a "Dawdi House", connected to their house. The youngest son gets the main house and the parents live in the "Dawdi House". I am so proud of you for doing what you are doing..I know it must be very difficult and energy consuming...But, it is the right thing to do,it is what Jesus would do..you are brave, i am proud, they are not ready to move away.I am sorry that this is not the answer you wanted or expected...Keep up the good work ! I know it is hard, but they are worth it !!Jesus loves you and so do I....
Recently- she wrote to me on Facebook and said:
How is your Mom? She never emails me,, has she forgotten me? She just sends me forwards.. not the same as email.. How are you holding up???? You have a BIG JOB !! Jesus knows what you can handle... yeah..keep up the good work !!
I love this woman- she has been a good friend of Mom and Dad’s for a long time. But it is frustrating to get these kinds of messages. (If you read this sweetie- please know I love you and have left your name out of this.)
This is what I wrote back to her…
Mom has Alzheimer's. She can and does "hold it together" for awhile when she is with others. She loves the adult day care she goes to 3 days a week. She can socialize. She can shine. She is high functioning in her ALZ. But- she has Alzheimer's.
She is not a nice person any more. Not to me- a lot of times not to Dad. It is not Mom- it is the Alzheimer's. We are the enemy. And I am the General of the enemy army. She hates me.
Mom does not hate me. Mom loves me. But ALZ-Mom hates me. She spews venom at me. She can say the words "thank -you" as if they were dripping with poison. And each barb hits home and hurts a bit more. The poison in those barbs is slowly killing me.
ALZ-Mom does not believe that she can lose something. She believes people are hiding things from her. On purpose. To hurt her. ALZ-Mom makes excuses. She hasn't fallen because of lack of balance- she has fallen because she has moved to this house. ALZ-Mom thinks when she says she will do something she will do it. But ALZ-Mom doesn't remember whether or not she has done something, and cannot be relied on.
ALZ-Mom is crafty and angry. And paranoid. ALZ-Mom doesn't believe she can make a mistake. ALZ-Mom thinks (her daughter) shouldn't tell her how to take her medicine and doesn't believe her when she tells her ANYTHING about the meds she takes.
ALZ-Mom uses every chance she has to complain to her daughter about anything and everything.
My mom- my real mom- gave me a hug the other day. It was a real hug- full of love. It was wonderful. But ALZ-Mom took over again. Her hugs are not giving--they are demanding. Her hugs are not to comfort or to show love. They are to demand something from someone else.
What's wrong with me? I do not sleep well and am tired all the time. I'm exhausted. Mentally and physically.
I do not like my ALZ-Mom. She is too much for me. I hate the arguing. I hate the bickering. I hate being told how little I know and how awful her life is because of me. My ALZ-Mom thinks I GAVE her ALZ. She thinks I WANT her to be sick.
My ALZ-MOM is killing ME. And I cannot do this much longer.
Yes- God strengthens me. Yes- God is with me. And it is only through God and the prayers of the people who loves us that I have gone this far. But there is a limit. And it has been reached. We are looking for placement for ALZ-Mom.
I'm sorry to disappoint you.
6 comments:
Daughter - brave daughter! You are disappointing NO ONE! It's not up to anyone else. You have to be alive to love your mom when ALZ-Mom steps aside for a minute. If ALZ-Mom kills you, you won't be there for Mom. So many people are tugging on you, like they're all toddlers at your daycare, only worse, because their parents will never pick them up. It's time to do what you need to do, you know it - we've talked about it. I LOVE YOU!
There are those of us who truly understand, know that we are lifting you up in prayer daily. Sheri
(Living in the Shadows of Alzheimers)
You cannot make all of the people happy all of the time. Your mother’s friends are advocating for her, because they would want someone advocating for them. They believe they have her best interest at heart, but they can’t – because they can’t possibly know what is best for her by spending a few “normal” hours with her.
Caregiving for an Alzheimer’s patient is a 24 hour job, and it is impossible to do in the home without in-home professional help and / or medicating the patient into zombie-land. Without 24 hour supervision, your home is not a safe place for your mother. If you doubt that, I can send you countless articles about patients who left their homes, and wandered off to their deaths. Providing your mother with the 24 hour professional care that she requires is an act of love. With all Alzheimer’s patients, it is not a matter of “if” it is a matter of “when.” Only you can decide when. But I encourage you to do it before it destroys you, or your marriage, or your family, and more importantly, before something really dangerous happens with your mom.
Don’t let the judgment of others influence your decision. Do what is right for your mother, and your family.
I’m praying that God will comfort you during this difficult decision.
My dear dear sister in Christ...please know that you disapoint no one. I know the pain of ALZ...I lost my mom over and over and over again and finally she was at peace...but I have lost my sister and brother though it all. We no longer have anything to do with one another So is this what Jesus was talking about when he said " Follow me and let the dead bury their own dead?" I did not undeerstand....I perhaps hung on too long thinking I could help and do things and did not see my lost sister and brother...but the best I could have done was tend to the things of the living. This is a hard time for all but do not let this take you away from life. Please let me know how I can help.
I can see the difference everytime I'm with her. But I'm family. Your doing what's best for her and ffor the family. Loves and hugs
Me
I really needed to read this. I am just now dealing with all of this. My Mom recently told her doctor that everything wrong with her life was because of me. It hurts. Now I don't feel so alone. Thank you for writing this.
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