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My Mother, Alzheimers Disease and Human kindness

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Last October (2013) I had the calamitous and painstaking task of taking my mother, Emma, plagued with the effects of Alzheimers disease, to a nursing home in California where her beloved sister is an administrator. Despite the devastating distance, I had the support of my family. My mother under the watchful eye of my Aunt Mary, was the only circumstance I could agree to ever putting her into skilled nursing because she is a treasured mother and friend. I had hoped to care for her until the day she’d die. In fact, I’d promised her I would since I was seven. My dear Aunt Millie, my mother’s first cousin, came with me and was the strength I needed to have the courage to admit my mother, stay for the day and leave. Words cannot express the anguish I felt. I had Ava with me as she was too little to leave at home. I was still suffering from the effects of postpartum depression.

The night I admitted my mom I got Ava to sleep and curled up next to my exhausted, Aunt Millie. Aunt Millie who kept my mother the entire time we were filmingThe Lone Ranger,has been as close as sisters with my mother since childhood. I begged for guidance about how I could let the people in my life know that I needed to step out of it for a time and not just go on like I wasn’t in the midst of a travesty. I knew I was going home to the needs of my family and felt the world required me to march on while for me, time had stopped. I could not see a way for me to take the time I needed to mourn. I wasn’t sure I would ever be the same. I’m not. What I wanted to do was check out for a time but knew the demands of life would not permit it. I reached out to my kind and supportive husband in this text;

I can feel myself on the verge of going to a very dark place. I need help when I get home. Make me go exercise. Make me do my list of things my mom’s home needs me to do. Make me decorate for the holidays and send care packages to my mom. Make me choose my family and the gospel over crawling into bed. I’m feeling so terrified right now. I have had so many friends pour out their support to me yesterday and all I want to do right now is avoid them because I don’t feel that they understand. I’m in a bad place and rather than going deeper I need help. I’m so very sad and devastated. I know I can no longer take care of my mother and still take care of my family but leaving today is one of the hardest things I’ve ever done.

He said he was sorry and asked what he could do other than be my friend. I explained how little composure I had and how emotional I was and afraid I couldn’t keep it together to travel. I’d slept from 8:30PM to 12:00AM then off and on from 1:00AM to 5:00AM because Ava woke me up 4-5 times. He asked if I had bad dreams but I hadn’t. My mother had consumed my thoughts and I ached from having to leave her. Spencer asked if I’d thought we were doing the right thing. After a long deliberation I replied;

I think so. It’s what’s right for our family. My mom chose her family and would want me to do the same. She is just scared. This is so brutal though. I’m in turmoil. I think I need to let myself grieve for a few days. Then by Saturday help me by helping me to live again. I’ve always judged my parents so harshly for having little to nothing to do with the care of their elderly parents. Now I see that they chose us, their children.

Spencer replied,

I’m not trying to make this harder on you, but if you think this is all too much for you and your mom, you just go pick her up and bring her back here today. I’m serious!! We can make it work if we have to.

Isn’t he wonderful? He deeply loves my mother and regards her as the kindest soul he’s ever known. She is dear to his heart. She is dear to many. I responded;

Thank you for this but I have to choose you and the kids.

In a zombie-like state we made the five hour trek, numb, to the airport. I gave my love to my heartbroken Aunt Millie and boarded the plane with my infant. I was in such a fragile state and although the many strangers I encountered in the airport and on my flight hadn’t the slightest idea of my deep sorrows, I was surprised by the human kindness I felt from every direction. This helped me along my extended journey home. Ava and I ended up getting stuck overnight in a hotel but there was no fight in me. I was submissive to my fragile existence.

When I arrived home, met by Spencer, he asked again if we did the right thing and should we go get her. He explained how the thought of her being afraid and alone was more than he could bear. He was trying to help but it hurt so deeply to consider that I abandoned my mother. With my face uncontrollably contorting I whaled a penetrable cry. I cried and cried for fear of doing the wrong thing. It was unspeakable grief. Grief for losing my mother, for her never ending decline from this thief of a disease that began when she was just 55 and I, 25. Grief for being cheated out of her watching my children grow up. Sorrow for my inability to care for her physical needs and those of my young children. Feelings of total failure consumed me.

My mother’s disease continued to advance at an unspeakable rate. She is a tall woman so at the skeletal weight of 108 pounds my Aunt Mary encouraged my brothers and I to come and see her while she was still able to walk. Here is my account from my very next visit with her;

After traveling all day we got to my mother at 8:00 PT. She was waiting at the entrance with her sister. At first glance she did not know us and her frail appearance made her disease all too real but immediately we could feel of her sweet and kind spirit and knew she was there. I could feel her there. I did not want to overwhelm her so I stayed back a moment while my brother Evan embraced her. I took my turn and she reached for my face. I could feel my spirit and hers connecting although she did not know my face. She continued to greet each of us and our spouses before her constant impulse to walk took over. The three siblings followed and our loved ones stayed back. We walked the halls and she reached for my hand. While holding her hand and doing her walking ritual with her all I could feel was lucky. So lucky that between this life and the next I could feel her spirit one more time. So lucky to have my sweet husband’s support and love and kids who were happy to stay with loving friends to afford me this moment.

We went to her room and my aunt helped her sit on her bed. We talked a little, she listened, and then for a long while her gaze locked on me. I pushed away feelings that she felt any sadness. Her look was familiar to me. It was like the long gaze from Payton’s newborn face the first time I looked at her. A sweet connection on a spiritual level. I realize now how very thin the vail (between life and death) is. These moments were magical and I won’t soon forget them.

AlabamaHillsCafe My Mother, Alzheimer’s Disease and Human kindness My Mother, Alzheimers Disease and Human kindness AlabamaHillsCafe

We left her in her room and Aunt Mary walked us back to the lobby where Spencer was waiting with Ava. We knew my mother’s impulse to walk would not allow her to rest and soon she reappeared. Ava made a noise and my mother’s attention turned to the baby. She smiled. It’s amazing how when words are so few because language is depleted and even smiles are scarce that the tiniest gesture becomes so meaningful. A glance, the offering of a hand to guide you, a gaze and the reaching out to touch have such deep emotional effects. The simple things become so far reaching.

I share these things with you because this morning I will go help shower my mom and dress her and care for her physical needs. I’ve been prepared by my aunt that she will be resistant as Ava is to be changed when she’s soiled so I wanted to share the truly sweet experience and the gratitude I feel for the opportunity to come here before it is tainted by the toll this disease has taken on my mother and I.

I’ve been to see my mother again since then. I went alone. It takes an entire day to travel from my home to Lone Pine. I walked with her constantly and we even danced. After my second visit she began eating again and I credit the visit for that. What a gift. The gift of feeling her spirit despite her absence. The gift of healing and the comfort and knowledge that comes with knowing I did the best thing for my mom. I look forward to seeing her again as soon as I am able. I love this new version of her too.

Each time I’ve gone I’ve eaten and been nourished at Alabama Hills Cafe and Deli. I don’t only mention them because their food is fantastic. There are many fantastic restaurants in this tiny little town. It’s the best, but I regard this eatery as a place of comfort. A place where human kindness is in full force. They have done so many considerate things. Although they do not offer a delivery service, they’ve delivered sweet treats to my mother on Mother’s Day. On several occasions I’ve had them package goods to thank the staff that care for my mother. One person who had an hour commute and lived in a place with many more conveniences than Lone Pine offered to get us anything we might need, as we made this transition, and bring it back to Lone Pine when they returned to work the next day. They consoled me on my first trip when I was weak with grief. They strengthened my brothers, our spouses and I on the second trip when I experienced healing. On my most recent trip, although there was standing room only, they welcomed me and I sat and ate at the bar as I anticipated reuniting with my mother. If you ever find yourself in Lone Pine, CA stop in to theAlabama Hills Cafe and Deliand partake of the delicious fare and compassion offered there.

 

Making your way in the world today takes everything you’ve got.
Taking a break from all your worries, sure would help a lot.
Wouldn’t you like to get away?
Sometimes you want to go
Where everybody knows your name,
and they’re always glad you came.
You wanna be where you can see,
our troubles are all the same
You wanna be where everybody knows
Your name.

by Gary Portnoy and Judy Hart Angelo

6 Comments

  1. Hannah Thongthai says:

    Melanie,
    I never knew the struggles you were going through at this time. The love you have for mother, just like the love I witness you having for your children and husband, is so palpably sweet. Taking care of elderly parents is not an experience I have yet but I hope when it does happen that I can think of your story.

  2. Mary Gonzales says:

    That is so sweet. I’m crying, again. I love the picture. Would you send me a copy of the picture so that I can put it in her room?

    Aunt Mary

  3. Tammy Noe says:

    Hi Melanie
    I’m so saddened to hear of the news of your sweet mother and of your great struggle. Emma is one of the sweetest, actually more accurately, probably the sweetest person I have ever known. I think of her often and wish I had made time to visit with her when she was in Roseville. I support you in your decision and remind you of your comment that she would have wanted you to make this choice. She will always be close to your heart and you to hers.
    Take care of yourself.
    With love,
    Tammy

    • Melanie Prince says:

      Tammy

      I’m so happy to hear from you and thank you for your encouragement and kindness. I will forever hold Antioch II in a special place in my heart.

      Melanie

  4. Christi Pilgrim says:

    Mel…..how touching!!! I’m so glad you have written about your mom, it was such an emotional visit for us, I just want to hold on to every minute of memory we have with her. She is such an angel and more strong-willed than I ever imagined. We miss her so much but pray for her every day.

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