“I Don’t Have a Home”

Living with Lymphoma and a Mother who has Dementia

My mother says this or something similar to me almost every night.  She asks who owns the house we’re in and who’s in charge.  She recognizes her bed and wants to know how it got here.  She even recognizes her kitchen sink and is perplexed why it’s in a place she’s never been to before.   She says she just met my sister this week and was told that my sister is her daughter.  My mother thinks she’s nice and is glad to meet her.  One day recently, she talked to me about me, not knowing it was me she was talking to.  She said that “she” loves to help out and help people when she can, but she also doesn’t like being told what to do.  I smiled a little, wanting to know what else she thought of this “Diane” person.

The answers I have for all of her questions change frequently.  I used to try to maintain the truth like telling her she owns this house, but she doesn’t believe me.  So I tell her I own it, and I brought her bed here so she could stay with us for a while.

She goes to daycare twice a week, and has home health aides coming to the house three times a week so I can work and not worry about her.  She’s not thrilled with any of it, and especially doesn’t like daycare because she feels sorry for at least one of the ladies who keeps asking when she can go home.  It saddens her, and she’s let me know how she feels.    But a few weeks ago she said she wanted to talk to me about something.  I sat down and was on the edge of my seat with anticipation.  She told me that she’s been selfish and stupid about daycare and home care and that she was sorry.  She said she knows I’m doing my best taking care of her while also working and running a household.    This kind of conversation is in such sharp contrast to the ones I mentioned earlier.  She has great insight sometimes, but the last thing I want is for her to be sorry about anything.

I don’t feel too bad about bringing her to daycare because every time I pick her up, she seems happy and alert, and tells me that lunch was very good.   When I picked her up yesterday, she handed me a card that she had made, and small hand-made pot of flowers that someone helped her with.  She had one of the staff people write in the card for her because it’s difficult for her to write due to some tremors.   Tammy, the staff person said that Mom said she didn’t want it to be sappy when Tammy offered to embellish it, so the words are all Mom’s.

Here’s the flower pot and card:

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She was thrilled to give these little gifts to me, and I was even more thrilled to get them.  Although it can be a little upsetting being there, she’s still very well liked and taken care of, and given opportunities she wouldn’t otherwise have.

On the way home, she told me she was homeless.  I asked her to explain what she meant, and she said that if something happens to me, she’ll have nowhere to go.   I begged her to stop worrying about things that haven’t happened.

I’m writing all of this with the heavy reminder that I have a PET Scan scheduled for next Monday, and I meet with my Hematologist on Friday to hear about the results.  This will be a day when I learn about the next chapter of my life…either the one that allows me to return to living without nearly constant worrying about the existence of cancer in my body, or one that puts me on another path of treatments, waiting for the hopeful day when I can return to less worrying.

In any event, my mother will never be homeless no matter what happens.

I just wish she could remember at least this.

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***In 2012, my mother gave me permission to write about my father’s life with Alzheimer’s.  When she was diagnosed with dementia a few years ago, she also gave me permission to write about her.  She doesn’t read my posts anymore because she can’t remember how to get on to her computer. I write about her with her standing permission.***

 

 

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8 Responses to “I Don’t Have a Home”

  1. Nancy says:

    Oh, Diane. You definitely have a full plate in life. I am glad you’re back to work part-time as I’m sure you find it therapeutic to be out and about amongst other co-workers, friends, and keeping active and your mind busy. Your mom’s words, “I know I don’t always show it but I am truly grateful for all you do. I Love you.” brought back so many memories. I still have the card that was written by your mom’s “twin” with the exact words. You are truly a gem to everyone. Diane, if you would like company next Monday and/or Friday, I’d be more than happy to drive and be with you. You have my phone #. Don’t hesitate to call. Luv U. God bless.

    • Diane Fiore says:

      Nancy, I have no doubt about my mother’s “beautiful twin”, your mother, saying the exact same words. She was grace and love personified. Thank you for always offering your support. I know I can call you for anything. I think I’m OK with these two appointments, but will reach out if something changes. Love you all!

  2. Glynny Schiavoni says:

    God bless you, sweet friend. Continuing to lift you up in prayer.
    Love,
    Glynny and John

  3. Raining Iguanas says:

    i spent forever trying to find the words to express how touching your story is. I finally gave up because there aren’t any.

  4. Lady Di…I’m working as an Ombudsman in our local Assisted Living Center, which includes a Memory Care wing. I can appreciate a fraction of what you’re going through with your mom. I just wish I could offer your more in terms of help. Being a caregiver is an amazing and daunting task. Being a caregiver when you yourself could use some caregiving is beyond words. I admire and respect everything you are doing…for your mother and for yourself.

    • Diane Fiore says:

      Cathy, The people at the ALC are the luckiest people having you as their advocate! So glad you’re continuing to share your exceptional gifts with people in need. My mother was the Ombudsman at the facility where she goes to for daycare, and my father also went there, so they know her on a couple different levels and love her. She’s lucky to be there, and I’m lucky to have her here. Thanks as always for your kind and caring words and encouragement. Much love to you.

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