She Wants to Go Home

memory-lossI tell mom she’s 96 years old, but age is not registering in her mind. “I can’t be that old!”

“Yes, mom,” I say to her gently, “You are 96.”

She shakes her head in disbelief and responds with, “No, I’m not!”

I ask mom how old she believes she is and the response, “In my seventies.”

An aide attempts to confirm her age, but mom resists, and I eventually have to change the subject.

This is how the conversations have been going with mom ever since the Wednesday before Mother’s Day. On that day, mom was admitted to the ER with a fever. Three hours later, she was sent home and a heavy-duty, 10-day antibiotic was prescribed to treat what was thought to be either a UTI or the start of pneumonia. Given that the ER doctor did not feel it necessary to keep mom overnight, I felt that this was simply a bump in the road and life would return to as-normal-as-it-can-be for her.

I was wrong. A flip was switched that day, one that would worsen her dementia and turn off memories of the present.

Mother’s Day weekend was bittersweet. My brother came home to the unwelcome consequences of mom’s health issues. On Friday afternoon, mom spit out many random words and sentences, none of them making any sense. Saturday was somewhat better, with fewer random words and more of a conversation. Mom knew her son; however, I was her sister Jeanne. The latter has been common for some time now, and I’ve learned to roll with a change in identity at any given moment.

On Sunday, mom regressed as she kept calling for her daughter. “Where’s Mary?” she would ask repeatedly and when I told her, “Right here mom, it’s me,” she would look at me extremely puzzled. Finally, mom asked me to move in closer and then asked, “How tall are you?” I told her 5’8″. She said, “No, that’s not right.” So, I asked, “How tall am I supposed to be?” An elderly left hand went level with the well-worn arm of the wheel chair. Mom had been looking for child Mary, perhaps the one who was five or six years old. This tall, fifty-something woman was too tall and too old to be her daughter.

On the Sunday after Mother’s Day, the anxiety and paranoia that can come with dementia showed its ugly face. “You need to get me out of here, I’ve been kidnapped” claimed an insistent mom. “Don’t leave me here, you can’t leave me here,” was the other plea.  Mom repeated both mantras several times and I felt hard-pressed to comfort her. I tried to gently tell mom that everything was okay, that she was being cared for, there was no need to leave, but that was not good enough. In mom’s mind, she was being held against her will and I was her way out. “Just take me to the bus station. I’ll take the bus home.” Mom’s reality did not include her frailty and she stated that I could simply drive her to the corner and she would walk the rest of the way to the bus.

Creating JoyAt this point, two chapters of a recently read book, Creating Moments of Joy by Jolene Brackey came to mind – “Stop Correcting Them” and “You are Wrong, They are Right.” I attempt to put that into practice every time I visit mom…to not argue with her or correct her, but it’s easier said than done. Is it possible to agree with a kidnapping or that family members are alive when that is far from the truth? In contrast, I have had several moments of agreeing with this dear woman, only to be told I wasn’t telling the truth or “that can’t be right.”  It can be a no-win situation, one in which any answer is the wrong answer.

On kidnap Sunday, I felt completely frustrated and emotionally unnerved. I wasn’t prepared for mom’s paranoia and the pleas to save her from the two people at the next table (an aide and resident), who were scheming and plotting against her, and the police officer that walked into the dining room as we were talking (it was another resident in a blue sweatshirt). For a while, I didn’t know how I was going to comfort or calm my mother, or if I would be able to leave without her going into hysterics. Thankfully, after shift change, two of mom’s favorite aides came on duty and both engaged her in a delightful conversation that helped to calm her anxiety for the moment.  With one aide’s encouragement, that he would take care of her and she would be safe, mom seemed to forget about being “kidnapped” and started to focus on supper. Eventually, I was able to say goodbye to mom without her asking me to take her home or to the bus stop.

While the paranoia of a perceived kidnapping has disappeared, the yearning to “go home” has not. Mom has not recovered from the Mother’s Day incident in the way that I had hoped. She has taken a deeper step into dementia, a change that seems to be permanent until the next change occurs. With every visit, mom begs me to take her home to Milwaukee. She believes her mom and dad are alive, as are her siblings, because she can’t remember their deaths or funerals. She doesn’t talk about her husband unless I bring up his name. Even though mom knows my name is Mary, she still asks for child Mary. And the odd words or sentences show up in a random fashion. Mom and I have conversations, but they are not the stories where she recounts her childhood, the stories she could remember. Today, the conversations between mother and daughter create an environment where little white lies are necessary. “I can’t take you home, mom, I don’t have a car,” or “I don’t know where your brothers are, they must be working.” These are lies of necessity.

Brandy Manhattan“Has mom been drinking her brandy manhattans?”

“No, she hasn’t asked for one, so we aren’t making them for her.”

“That’s okay. I should probably take the brandy and vermouth home with me so it is out of your way.”

“We’ll let you know if she starts asking for them again. You can always bring it back.”

Along with the end of the brandy manhattans, mom has not been asking to go out for lunch on Saturdays and I have not attempted to take her out for a ham sandwich or a ride around town. My fear is that once I get her into the car, if that’s still possible, she will be confused about where we are going and insist that I take her “home.” And I won’t be able to get her out of the car once back at assisted living.

Perhaps I need a friend and the Cabulance; perhaps I need to let this go, as I did with the adult refreshment.

The good that has come from this recent decline, is that mom no longer sits alone in her room for most of the day. In order to keep a better eye on her, the aides have her hanging out in the living room or dining room with the other residents. Mom had not been a social butterfly before this, choosing to stay in her room during the time there were no meals or activities. I had always been concerned about this since her visual and auditory disabilities leave her without the ability to watch TV or listen to the radio. There was no stimulus in her being alone in the room, other than the occasional visitor or drop-in by one of the aides. Now, mom is around people and conversation and the aides who care for her. I believe this is a much better situation for her. Mom can focus on the happenings around her from time to time, rather than dwell on the confusion that inhabits her mind.

What I have learned over the past few years, watching mom descend into dementia, is that there is much I have to let go of, including the desire to make it all better. Dementia and Alzheimer’s are irreversible and there’s not much that doctors or I can do to bring mom’s mental state back to normal or even back to where it was two months ago. What I can do for myself is be educated about the disease and discover ways, through classes, contacts and reading material (I highly recommend the book mentioned above), to engage with mom in a way that doesn’t create additional anxiety for either of us. A good cry, now again, also helps with release and acceptance.

Home_6“Are you going to take me home with you?”

“No, mom, I can’t.”

Why not, don’t you have your car?”

“Yes, but I have to meet someone when I leave here.”


“I’ll be back to see you next week, on Saturday.”

“Then will you take me home?”

“We’ll see…if I have a car. I love you, mom.”


33 responses to She Wants to Go Home

  1. Oh my, to my heart. Excellent writing about this subject. I went though a bit of this with my angry brother as he was dying — he did not want to admit the obvious, and so blamed me for being unwilling to take him out of the home because he had tried to run away and now wore and ankle alarm. I took the heat and the blame and was the bad guy so his children, my niece and nephew, could have their remaining days not filled with that — my brother was a lifetime alcoholic, and it was time to be peaceful. Sending you big huggs. It is a milestone for you that you don’t need to correct her and make it right, but just be with her and tell the white lies that comfort.

    • bikerchick57 says:

      Katie, I’m sorry you had to go through the tough time with your brother, but you are a good soul to have removed that burden from his children. It makes a huge difference when I can simply agree with mom and make it easy for both of us. It absolutely breaks my heart when she gets anxious to the point of almost being in tears. Any day we can avoid that is a better day.

  2. Thank you bikerchick. Beautifully written. I’ve known several people in different stages of dementia in later life, and the particulars always seem to be quite different even though some of the themes (e.g. thinking they are at a far past younger stage, or the simple problem with what they call “word salad” where the person may be trying to communicate but all the wrong words come out.

    In some ways, some degrees of dementia may be blessings for people as they move past their mid-80s: unless they are unusually lucky physically, most of them will have great limitations on what they can do and will also be facing recurrent and uncomfortable medical problems. If they do not have some clear larger projects/goals that they are involved in, I’m afraid many folks at that stage would simply become despondent — feeling that their “productive” or “useful” lives are over, and that they’re just “waiting” for things to end.

    And that waiting stage in itself can be very difficult for those who do not have a strong religious faith that has “told” them what will happen and how nice it should be when their heart finally stops beating. As much as religions have historically brought conflict to our world, they’ve also helped many people deal with the concept of death in a far more comfortable way than they might have if they didn’t have the religious beliefs to bring them that comfort.

    – MJM, who’s got a LONG way to go before being 93!

    • bikerchick57 says:

      The aides have been telling me that mom has been praying a lot…the Hail Mary. She’s been a devoted Catholic all of her life. I can only imagine what she prays for and I guess I don’t want to know. Sometimes I think she’s just asking Him to take her, that she’s had enough of this life. Before this incident, in the past three years or so, mom would sporadically say to me, “I wish I would just die.” I’m pretty sure that came from bouts of loneliness and boredom. If this next stage keeps her from feeling that way, that it might be a blessing in disguise. I guess we shall see. Thanks for your comments, I really appreciate them MJM.

  3. I often envision hitting 100, but I forget the shape my brain might be in at that time. We just never know… I think you’re doing a great job. Much love.

    • bikerchick57 says:

      Thank you so much for your kind comment. Seeing my dad live to 95 and now my mother at 96, I don’t think I want to live that long. Both the physical and mental downturns are not much fun.

  4. joannesisco says:

    Oh Mary – I remember this journey with my mom so well. She’s been gone 5 years now, but it still breaks my heart when I remember some of those conversations … especially The Terrors. That’s what we called them. Her bad spells always seemed to take her back to her teenage years in Nazi-Occupied Holland.
    One day she was absolutely horrified to see me walk in her room. ‘How did you get in here past the soldiers? They will kill you if they find you here. Shhh, I hear them coming … hide behind this curtain and don’t say anything.”

    I’m so, so sorry you are going through this. Some days I would laugh at some of things she would come out with … other times I left in tears.

    Aging is very cruel. A big supportive hug to you Mary.

    • bikerchick57 says:

      Thanks Joanne and hugs to you too. I know you had a hard time with your mom, it is an extremely difficult journey. I’m with you – that some days I smile and laugh and others make me cry. But I don’t feel sad for myself, I feel sad for mom. It has to be hell for her to be so anxious and confused. That’s the part of letting go because some days I want so badly for her to go back to before she had dementia, even though I know it won’t be possible.

      • joannesisco says:

        I know what you mean. As we age, our world starts to get smaller and smaller. It’s very sad.

    • joey says:

      That is one of the worst things I’ve ever read in my life, Joanne. I’m so sorry your mother experienced that, and that you had to witness her suffering.

      • joannesisco says:

        It was really sad Joey. She was in a place of terror and there was really nothing we could do except try to reassure her we would keep her safe.

  5. Dan Antion says:

    Very well told story of a difficult passage, Mary. I watched my grandmother go through this when I was in my early teens. I spent many Saturdays and Sundays with her during the day, while my Aunt, who lived with her, worked. I remember the little lies. I remember the role reversal and the frustration. We’ll keep you both in our thoughts and prayers.

    • bikerchick57 says:

      Thanks, Dan, for the thoughts and prayers. I remember my dad being frustrated with one of the Alzheimer patients at assisted living because she didn’t comprehend reality. He didn’t understand that it didn’t pay to argue with her. It makes me somewhat glad that he didn’t have to see mom in her current state. I don’t know if he would have been able to handle it.

      • Dan Antion says:

        It’s hard when you’ve seen people muscle through hard times and challenges, to realize that they can’t fix this.

  6. loisajay says:

    This was heart wrenching, Mary. Two co-workers went through this with their parents. They wound up doing exactly what you said: agreeing with everything their parents said, and lying. When my dad went into a home for his Alzheimer’s, phone calls were hard b/c he had no idea who I was. And then he would ask me to come get him because ‘everyone here is crazy.’ Such a hard place to be in, but you are doing such a great job. Your love and care for your mom shines through with every post. Love to you, Mary.

    • bikerchick57 says:

      Lois, you’re so kind and it helps that so many other people like you understand. I don’t even call my mom anymore because of her not being in the room and because she would probably be the same as your dad was – confused by who I am. I appreciate your support more than I can say. Thank you so much.

  7. joey says:

    Oh I am so sad for you both. This brought me to tears a few times. What a terrible switch to have flipped. I have not experienced this myself, either it doesn’t run in my family or no one has lived long enough to get it. What I have experienced is a complicated relationship with my kindly, but schizophrenic neighbor. I was only beginning to understand and relate to going along with him, carefully avoiding too much reality. Now he’s moved to a group home and I miss him. Part of him, you know? I should write about that.
    I imagine you must feel similarly, missing parts of your mom that kept you connected in a mutual reality.
    I often wonder if my former neighbor is enjoying his group home for the same reasons you mention above. I bet he likes the company, the distraction. I like to think he does.
    My heart goes out to you, it does.

    • bikerchick57 says:

      Joey, you’re so sweet. I just read your latest post and the paragraph about your “mommy” made me smile. I’m glad you had such a good time with her. Yes, I miss many parts of my mom at this point and, yet, I feel closer to her than I’ve ever been. Perhaps it’s the vulnerability and the emotions as she was a pretty stoic woman growing up. The only time I saw her cry was when her sister, Jeanne, was dying of cancer. Otherwise, she always held those emotions at bay.

      Are you able to visit your former neighbor in the group home? He might like to see you and it might be a bit therapeutic for you, to see that he’s okay and being well-cared for.

      • joey says:

        I agree, it must surely be the vulnerability.
        I have not visited the neighbor. People have mentioned it to me, but I don’t feel comfortable. Like, that’s not a thing introverts do, right? I dunno, I do miss him. I’d have to find out exactly where he is… Ugh, I dunno.

  8. Judy L. Brekke says:

    Sending a great deal of Love to you and your Mom. This is such a difficult challenge in our lives – our aging parents. I spent the final years of my Grandma Sophie Lillian’s life caring for her as she suffered from dementia. Her children (while adults) would argue with her and feel uncomfortable and upset when she could not remember them. I learned quickly to go with “the flow” of her meanderings. We spent a great deal of time talking about the gardens she and grandpa grew, the braided rugs and the quilts she created with her sisters, and the wonderful baked tasties that she created. These are the memories she had and gave us both peace. My heart cried for her – she was always nurturing and kind for as long as I remember her. You are a wonderful daughter, Mary! You are doing what is best for your Mom and she loves you for it. XOXOXOXO Judy

    • bikerchick57 says:

      Hugs to you Judy. Thank you for sharing the story of your grandma. You did one of the best things that you could have in just being with her, listening to her talk and have a conversation. What I have missed since Mother’s Day is having a conversation about mom’s family, her home, the siblings, the family garden, and many stories about her growing up. I learned things in the past two years that I never knew about her. That part has been wonderful.

  9. Oh Mary, what a difficult time for you and for your mum. I think what must be hard is having to become the ‘parent’. Inside, no matter how old we are, we’re always still their little child so it must be so difficult to lose that aspect. You are amazing in what you do for her and I’m glad you were able to share your struggles. Sending you a big hug across the miles.

    • bikerchick57 says:

      Thanks Heather. I’m not feeling the parent at this moment other than I have to shop for mom and pay her bills. But during the visits, I still feel the daughter even if she doesn’t recognize me or thinks I’m her sister. And I feel extremely close to her, more than I’ve ever been. I only wish I could have felt this way 20 years ago, when we could have had some fun conversations.

  10. M-R says:

    It’s a totally unmissable tale of life’s journey, full of sadness and joy. Mostly I am impressed by your unending patience and understanding; and reflect how lucky Mom is to have you. But then, it was she who produced you,M-J … i think you have been grieving for many years, as the mother you knew travels further away; but at least it will mean you can deal with things that much more strongly. You’re a wonderful woman, did you know ?

    • bikerchick57 says:

      Oh, M-R, you’re so sweet to say that. I am going to say that mom is probably blessed that she has her patient daughter looking after her rather than her son. Don’t get me wrong, I love my brother, but I think he would be far more frustrated with the situation. It’s better that he simply supports whatever I do to help mom and pays her a visit whenever he can. We’ll just keep going along in this journey and see what happens.

  11. I couldn’t bring myself to hit ‘like’ because having to go through this as the individual affected or their loved ones is not something anyone likes. You did a great job of writing and describing the turmoil. You’d think as the aging process takes its toll on our bodies it might at least leave our minds alone but not so much. Best regards to your Mom and much patience to you. 🙂

    • bikerchick57 says:

      Thank you Judy. I know, I don’t like it either, especially with mom also being sight and vision impaired. When I start feeling sorry for myself, I have to remember what mom is going through, which is a thousand times worse.

  12. LB says:

    Oh Mary, I am sorry for the loss you are experiencing.
    So many losses, actually. Your writing is honest, and beautiful, and heartwrenching.
    Strength to you, my friend

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