Sunday, December 2, 2012

Blog 55: My First Alzheimer's Support Group Meeting

My mom was moved from the nursing rehab facility to a group home last week.  I like this idea of her being in a group home better than a nursing home.  She is still three hours away from most of the family, and I don’t like that, but I can’t do anything about it.  I just hope Mom adjusts and starts eating again.   

Renee set a rule that we are not allowed to call her or even know the location at this time.  She sent an email and said that she will send a weekly email to tell us how Mom is doing.  That’s it!  It just irritates me when she put in the email that she and her kids and her husband have been going there often to see her.   I’ve about had enough of her control issues that I could scream!  Mom has FIVE DAUGHTERS WHO LOVE HER and want to be a part of her care and her life and everything that Renee allows herself to be a part of. 

Mom still has not been eating and I got a text yesterday morning that Renee was going to take her to the ER if she didn’t eat her breakfast.  She texted later and said that she ate a little so she didn’t take her in.  We will see how it goes.  But Mom has been moved four times in the past month and that is probably a big reason why she is not eating.  I’m sure her UTI has not gone away yet and that may be another reason.  I hope it isn’t something worse…that Mom is giving up…not willingly, but I know that people stop eating in the final stages of the disease.  It makes me so sad.  Christmas is coming.  L

I went to my first Alzheimer’s support group meeting yesterday morning, and I almost didn’t go because I was so upset about my mom not eating and having to go to the hospital again.  I have been wanting to go to this support group for the past four months, but something always came up and got in the way of me attending.  It was my chance to finally go.  I decided at the last minute that I needed to do this, so I threw on some clothes, washed the tears off of my face (knowing I’d be crying again soon) and drove to the meeting. 

I was the only new member there out of about 15 people.  When the group leader asked me to share my story, I did, and, oh boy, I started crying.  I tried not to but I couldn’t help it.  I cried, and cried, and I had to cover my face in my hands and take a moment to recoup.  When I looked up I saw compassion and even tears in other people's eyes.  I knew then that I was not alone, that they really did understand because they are living this nightmare in their own personal lives. 

I released all of the emotion I had inside as I shared with them as much as I could.  Once I started talking, I could not stop.  I eventually stopped crying and I was able to fill them in from the beginning to the present time.  I felt that they were on this journey with me and I didn’t need to over explain anything.  It felt so good to let it all out and get some advice from others who have been down the road I have.  I never felt so good about sharing my story as I did at that moment.  I felt such a release and a wonderful response of love and support and understanding.  One woman came up to me afterwards and hugged me. 

I finally had affirmation that I should not feel guilty about moving away, and that my sister Renee has handled her powers of attorney in a way that it was not meant to be, which has caused the dissention in our family, and she is never going to change.  I need to keep my distance from her and be in control of me, and be there for my mom in the way I have been, and be there for my kids and grandkids, who need me.   I was reassured, as I have been told by other people I am close to, that I have done so much for my mom and I should be proud of how I’ve tried to fight for a better life for her, and for trying so hard to bring my sisters back together again. 

Two group members told me I need to play the game that two of my sisters have learned to play in order to stay in the loop and get information from Renee about my mom.   I need to keep our conversations in brief texts, no matter what Renee does.  I told them that Renee is cruel with her words and her lengthy emails are very hurtful to me.  As hard as it is to ignore them, that is what I’ve been doing.  Sometimes I write a response but then I don’t send it.  It just helps to write it, I guess. 

One lady told me she can see that I am a very well-balanced person, who has empathy and compassion and that my nurturing nature and love for my mom and my sisters shows in every word I speak.   I even defended Renee in trying to explain why she does what she does.  It was unanimous amongst the group members that I should take the powers of attorney away from Renee.  I just don’t want to keep the fight going.  I want peace, forgiveness, and love with all of my sisters. 

I can’t wait to go to another meeting.  One of the women there has been going to this support group for seven years.  That says a lot about this group.  I felt so warm and welcome as soon as I entered the doors of this church.   I am so glad I went. 

My volunteer work at the nursing home has been a wonderful thing for me.  I live so far away from my mom and I can’t see her as often as I would like, so spending time with other elderly residents has helped me cope with the longing I have for my mom. 

One of my new friends there is a 64 year old woman, still so young for a nursing home, who is wheelchair bound, and has some Parkinsons and arthritis.  I'm sure she has many other health issues.  She speaks very softly and barely moves, other than the trembling of her hands.  When I touched her hand, the shaking stopped.   I am learning about her life and she seems to enjoy sharing her stories with me, even though she doesn’t make eye contact.  She asked me if she knew me and I said no, but I want to be her friend.  She smiled and looked up at me at that moment, and I knew I was where I needed to be.  A staff member told me she has not had a visit from a family member since she arrived there four months ago.  I don’t know the full story, so I am not going to judge.  I am just thankful that she came here from another nursing home, and maybe we crossed paths with each other for a reason.  I think she is going to help me as much as I can hopefully help her.


  1. Dear Lizzie,
    While reading this post it reminded me so very much of the experience I had with my support group. I think our groups are very similar. I always felt so empowered everytime I left and like you, I couldn't wait to attend the next meeting (they were only once a month).

    Regarding your sister Renee not wanting you to visit your mom for a couple of weeks....that may have been the request of the group home. I know that when we admitted my mom into the memory care wing they suggested the same thing to us because it takes several weeks for the 'patient' to acclimate to their new surroundings; typically they would become agitated. We didn't comply with their request because of the guilt we felt by leaving her there and it caused her stay to be terrible for all of us. We eventually took Mom back home (big mistake) because she never had the chance to acclimate and we felt guilty. So...I hope that makes you feel better about what your sister said. Of course, I don't know the circumstances for which she said that but I am assuming that is why. I don't know why she wouldn't explain that to you, however.
    I truly hope that you and all of your sisters will be able to come together now. You will all need each other so much during all of this.

    I really feel for you Lizzie. I can completely relate to what you are going through and how you are feeling. Everything you have described is exactly the way I was feeling. I'm very sad that my mother is now gone but there is a sense of relief that all of that is over. I am comforted knowing that Mom is no longer living in a constant state of fear and confusion.

    I really feel a strong connection with you and all of the other caregivers of parents with dementia/alzheimers. It's such a terrible 'club' to be a member of and we all need each other.

    Thinking of you Sweetie. Keep doing what you know is right. You are doing a wonderful job of being such a sweet and caring daughter to your sweet mom.
    Anne Balcom

    1. Thank you, Anne. It's always comforting to know others are there for you and understand what you are going through. That's the thing...people say they do, but they really don't know unless they have experienced it themselves...those are the ones who really know what to say and how to make you feel better. It is a club that we don't want to be a member of, but we are. I would rather write a different story, and that is why I try to write about the happy times too, because there were many. Even now, I can find a reason to smile when I'm with my mom. What you said about Renee is true. I agree that maybe the things she does are for a good reason, I just would like to be included in what's going on. A loving explanation would change everything. Take care, Anne.


  2. sounds like you have found purpoe in your life and a whole lot of new friends. Support groups, run right, can be a God send.

  3. I am so glad you found the support group and that you are volunteering at the nursing home. I love you so much mom!