“I Want To Get Out!”

For the last week or so “I want to get out” has become Mom’s new favorite saying and it is breaking my heart! We’d all become used to hearing her say “Our Lord and Savior Jesus Christ” hundreds of times a day over the last couple of years and that phrase always gave me hope that Mom was in a place of peace. Many people with dementia repeat the phrase “I want to go home” over and over and whenever Mom would say that she’d also immediately let you know that “home” for her was in Washington, DC the place where she was born in 1929 and lived until she was 80 when I moved her to Maryland to be closer to me.

But things are changing, and now when she says her new phrase “I want to get out” she means she wants to get out of bed and GO!! BUT SHE CAN’T!! This week is the first time she’s gotten angry about her situation. She’s flung back the bed covers and tries to swing her legs around determined to get out of her bed. If you are new to this now 15 year journey with us you may not know that Mom had escaped several times years ago when she could walk faster than most people half her age. The police had to be called twice to help locate her and once I got her back from a Facebook post! I fear that somewhere in her brain she’s recognizing her limitations and not liking it all!

When she insisted the other day that she wanted to walk, Janet helped her take the few steps from her wheelchair to the bedroom doorway. Every other day when they get her out of bed, they’ve been taking her out into the sitting area right outside her bedroom so she can sit with her roommate and she seems to really like that. I feel so HELPLESS in all this! One of the things I was looking forward to most when I retired from my full time job at the end of June was to spend lots of time with Mom. But with the COVID variant running rampant, my visits are limited to 30 minutes every other day. While I’m grateful for ANY time with her, it’s soooo hard to be outside on the patio with her inside in her wheelchair. Even worse is the fact that I can’t hug her!! I thank God for the photo pillows my sister-friend Kris gave us so we can at least hug those when we are sad. Often when Janet checks on Mom in the middle of the night she’s holding on to that pillow with our photo on it. I pray the pillow will continue to comfort her now that I can’t.

Mom’s been in hospice care since March 23 and at first she was sleeping a lot. She seems to be really alert right now as during our last visit she even sang a few words to the Aretha Franklin song “You’re All I Need To Get By!” that came on the XM channel I playing for her.

That song definitely reminded me that right now I’m definitely NOT all Mom needs to get by, so I am eternally grateful for the awesome Caregivers at Lifesprings Eldercare for taking care of her and keeping her safe. I pray that my 30 minute visits with her gives her some joy even without my touch. Lord know I want EVERYONE with this horrible disease including my Mom to be able to “Get Out” of this nightmare they are living in! I wish they could walk wherever they want to go and be able to find their way back by themselves. And more than anything I wish I could take her hand when she says “I want to get out!” and say “ok, let’s go” and go for a really long walk like we used to. Because none of that is possible, my goal for today’s 30 minute visit with my Wonder Woman Mom will be to smile, play music and to leave her with some joy without showing her how totally helpless I feel right now. We may both be a little down these days but the one thing I can guarantee is that this disease will NEVER steal my HOPE! One of my hopes for all of us is that we will have an opportunity to be ALL someone else “needs to get by” today! Love you Mom, see ya later!

8 thoughts on ““I Want To Get Out!”

  1. A beautiful, poignant post, my dearest Loretta. And tho’ you feel helpless, somehow, some way I do believe that your blessed mother knows of your ever-present love and care. For one thing that I have come to believe about the disease of dementia (in its manifold forms) is that the one afflicted — tho’ s/he appears diminished in human capacity to all who observe her/him (and, indeed, is experiencing the loss of the faculties of worldly perception and intuition) — may retain the ability to engage her/his inner world in ways beyond our knowing. Bless dearest Doris. Bless you, my dearest sister.

    Love

    • Thank you Paul!! As we have discussed in the past, I always wonder what’s going on in Mom’s mind! These days she often stops reading and the lays her head back to look outside at the trees and smiles. I hope she’s smiling at nature’s beauty or a distant memory. But whatever it is, it makes me smile! As you say whatever she’s experiencing is beyond our knowing! I’ll just enjoy being present!

      Love

  2. Dear Loretta,

    I am so sorry to hear that your mother “wants to get out.” I know the experience of hearing my mother say those words, or something very like them, in the deep throes of her own years of dementia. It is very, very hard to hear that even in the best of times, but now when your time with her is limited, and your physical contact with her is constrained, it must be so much harder. You and she are in my heart as you travel this terrain.

    I find myself, however, heartily agreeing with what Paul says as well. Your beloved mother has a treasury of resources from her long, rich life and experiences of love with you and with others that is still very present within her. While she may not be able to call upon those ties and memories intellectually as she used to, her heart and her soul are still connected deeply with you, with her caregivers, with others, and with God. Nothing can take that away from her, and in fact, my experience with my own mother was that, as her life wained, all the dross of fear, frustration, and defensiveness gradually gave way to an abundance of love that she more and more expressed to everyone who came near her. I still believe that in the end my mother finally fully became the woman she was put on this earth to be. She was at peace with everyone and everything. She was simply a lover of all people, which I think is what she always wanted to be but struggled against forces that prevented her for most of her life.

    From everything you have told me about your mother, she is fundamentally a lover also – a lover of people, of experience, of learning, of all things good, of “our Lord and Savior Jesus Christ,” and last but never least, you. I am sending both you and your mother my best and most earnest wishes and prayers that you will experience the transformation I was so privileged to witness, that peace will surround your mother and you, and that you will soon once again be able to be as close together as you want for as long as you want. I hope that you will find some meaningful way to take her by the hand and go for that walk that you both so long for.

    Sending much love to both you and your mom, dearest Loretta.

    Karen

    • Thank you so much Karen!! Thank you for sharing more of your Mom with me! You and Paul are right, she’s still connected with me! We even think that she misses me on the days I don’t get to see her.

      I feel the same way about Mom as you did about yours and I so appreciate you reminding me of it!! I think Mom is absolutely the person she was put on this earth to be… peaceful, grateful and full of joy!

      You’re also right about Mom’s love of learning. When she reads something she’ll nod and say “yep, that’s right” as if she’s just learned something new! I always love it when she says that! All the caregivers love her because no matter what they do for her she always says “thank you”! And it’s the most sincere thank you you’ve ever heard! Every time she says “our Lord and Savior Jesus Christ” I am reminded of how strong her faith is and I’ll always treasure that!

      Thank you my sister for your love and prayers!! So thankful for you and Paul! Love you back!

  3. My dear friend, I cannot tell you how many times I read your post, unable in those moments trying to find words of comfort to soothe the ache in your heart. I started praying asking Almighty God for His guidance. He directed me to look at the picture, I enlarged it to see the expression on your mother’s face as she looked at you. I thought my God, Mom wants to hold, touch her daughter, to soothe her hurt and pain. It was then I heard a still small voice say, ‘there is something within.’
    I went immediately and got my song book to find that beautiful spiritual song, ‘Something Within.’
    He said, pen the words for your friend Loretta; this is for her, she will know!
    ‘Something with in me that holdeth the reins, Something with in me that banishes pain, Something with in me I cannot explain, All that I know there is something with in.’

    I love you and Mom! Continue to ‘Cherish’ each and everyday with her.
    Belinda

  4. Dear Belinda!!!! All I can say is WOW!!!!! The words to Something Within made me cry!! I wasn’t familiar with the song, but it’s amazing!! It TOUCHED MY SOUL!!!! I’ve download it and will play it for Mom tomorrow!!

    We LOVE YOU back!! Thank you for making my day!!! Cherishing each day!!

  5. Good day Mrs V. I read your vlog and I am again sending you all my love and support. As i continued to read your vlog this came to me. You are her “get out”. With your every day travels, your trips in the RV, your trip with Kendal and Kim you are her “get out”. If that makes sense. You bring all your stories and pictures to share with her. I know physically she cant do and go all the places you know she would want to go but she can share and some how live thru your experiences. Hopefully my words along with the other beautiful encouraging words of your friends I see in the comments give you some peace. Love u Mrs V.

    • Lt. Col Gen!! Thank you soooo much my friend!! I love what you wrote soooo much!! Mom has always lived vicariously through me and my millions of photos. She wanted to travel when she was younger but never did, so I appreciate your take on our family more than I can say! And YES I am at peace, and am so glad you are part of my village!!

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