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"Can I go home with you?"- I am heartbroken
Mom had a bad day yesterday throwing her food and drink at dinner. Tonite after dinner, she asked me if she could go home with me . My heart just dropped. Some days I just wonder if she would have been better if she would have stayed at home instead of at a facility. She never seems happy and yes, she has declined significantly.
It seems very hard for her to live with it, and hard to watch . Worse that there is nothing I can do to make it better. I moisturize her face and massage it, massage her hands, comb her hair, put lipstick on her, then she takes her hand and messes her hair saying she does not want to be touched.
I tell myself dont let this eat you up. But it is despite how busy I am trying to keep myself.
I understand. The last four years of her life my mom was in assisted living because she needed full-time care and I worked full time. Being divorced with no kids and no other family around, there was no way I could take care of her. She used to ask me, "Why can't I live with you?" And it would break my heart.
I know she would have been happier with me and I believe she would have lived longer. But with the amount of care she needed,I just couldn't make it happen. Every time I left her, I cried in the car and still carry the guilt to this day, six years later.
I hope you can find peace in your heart. Sometimes there are just no other choices.
Hugs to you...I too hate this disease. I have decided there has to be a river in heaven named Alzheimer's because I know I cry so much about this and Mother and I during stages 4-6 cried together every day. Now she rarely cries but alas I still do.
For all of us that have shed so many tears we just know that this site is a haven of rest and ability to share it all with people that understand why we cry all the time.
So sorry that this is your really hard time.
My mom didn't have AD but had a degenerative brain disease ( that's all they would tell me). She became totally bedridden and very childlike before she became mute. Then she used to follow me with her eyes.
Now my father has AD. This time, I was at a point in my life where I could retire and have him move in with me. I must honestly say, borh situations SUCK. No matter if your loved one is at home or in a facility, having a brain disease that robs you of who you are and who you were is the most hideous, awful thing.
You just have to do the best you can and make happy moments with your loved one. They won't remember it, but they will love it in the moment. And YOU will remember it.
Now if I could just follow my own advice. Hang in there.
My first thought was this, based on my own recent experience....
It appears to me that we tend to do for another those things that we believe would be valuable and appreciated by us (combing your mother's hair)...maybe there is a way to explore with your LO what she would like...I don't know her stage or if she is able to communicate what she wants...keep trying different things if she cannot communicate and eventually there will be something...
My experience. My mom mostly talks jibberish non stop...some words she uses are real words and some of her sentances are perfect. Most of it is jibberish. Instead of talking sentances to her when I want or need to do something for her or want to inquire whether she would enjoy this or that I try to limit myself to a single word (or two).
My mom used to love shopping. She would rise early, get dressed, hit the road and get a Starbucks coffee mocha, by then the stores were open and off she would go.
Hence, her personality hasn't changed much really. When we are sitting or when I first arrive to be with her she will say "let's go" or "let's go someplace." I usually plan on going out with her but to try to elicit a affirmative reaction to my suggestion of going out I have said "do you want to go bye bye" (I thought baby talk was simple but learned it is not)
So instead of my using bye bye and other self selected terms, I used her term "go someplace?" Tonight I did it and she said uh huh. Magic.
I always try to enter her world but I wasn't quite succeeding in the language area.
Good luck in finding something your mom might enjoy
PS While out shopping mom would always buy the Enquirer magazine and a few others similiar....therefore, I always make sure she has a magazine in front of her or to hold on to. I keep them in the car too in case we end up at a park of coffee place. She can't read but she can see the pics and turn the pages.
Taking mom and leaving her at the NH for the first time was probably the worst experience of my life. I have blocked out what she said and what I said entirely. I do remember her eyes. Haunting forever.
She is limited in language skills but talks jibberish non stop (I am grateful for).
She says alot of mommy and daddy died. Keeping it simple i repeat that and add but everyone is ok. It has become her mantra and mine. I always hold her hand or hug her when i say this. One time she even said, "they are ok."
I guess my mom is referring to a time in childhood when she speaks of mommy and daddy. She will also say I want to go home. I hope she is saying she wants to be home with her mommy and daddy and not me because my heart would break. I might be in denial I know.
Tonight we went shopping and to Starbucks. We returned to the NH and remained together. Then the nurse was going to give mom her sleeping pill and the CNA was holding her hand. I needed to run to the car...as i left she was talking.
When I returned, the CNA said that when I left my mom said (perfectly) "I want to go with her (me)." OMG. I remained there as I always do until the pill took effect, then I slipped out.
I was moved beyond words by what she said. She can no longer say my name nor does she refer to me as her daughter (she introduced me as her daughter once) but I apparently mean "something." Wish I knew what.
I find the disease so heartbreaking from mom's stand point as well as mine as her advocate, gatekeeper and part time caregiver.
I used to be a cryer but when mom arrived unexpectedly in '05 my tears dried up. I cried one time in 5 years and a 2nd time briefly this morning after a very bad dream.
I think i quit crying because I have to stay together to get everything done that needs to be done...dunno but I know its not good probably.
Prayers for all of you
I am sure her words stabbed you in the heart. Ouch.
My words are somewhat empty, because NOTHING can take away that pain. But, w/ ALZ, it is not uncommon for people to sit in their home of 47 years and still ask to go home. The home of another place and time.
Facility or home, the disease has the ability to destroy the ALZ LO contentment and happiness, so do not torture yourself that being home is the answer.
When Mom says that, simply say "I'm not going home Mom, I'm going. . .shopping, work, whatever." Our LO are often very immediate in their thinking and a short term answer like that may satisfy her.
When my Dad was in the nursing home, he looked at me and said "I could come live with you." I could have handled it a lot better if I was prepared with answers. He was s/p hip fracture, so eventually my explaination of "well, Dad that would be hard for you, because we have a lot of stairs" satisfied him, he still had some memory.
I am sorry for your pain.
I would like to offer you a big hug and a shoulder to cry on. I wish I would have had that from someone when my dad pleaded with me to come home with me.
I, too, had to tell him, dad, I have a lot of stairs and it would be hard to get you up the stairs in your wheelchair. This was in the last few weeks of his life.
I understand how you feel, how you just want to wrap yourself around them and protect them and keep them happy and safe. We don't always get much assistance with that. I wished I could have cloned myself to be everywhere and do everything for him. I couldn't.
My dad passed away five months ago, and I'm trying to come to grips with all of the 13 years that I took care of him in some form or another.
There are some moments when I have clarity of mind when I realize I did everything I could, everything that I possibly could with his welfare always in mind.
Keep talking to people about your feelings, pick the people you can safely share your feelings with who will have understanding, that is important, that's not something I had other than here.