Monday, January 20, 2014

A Break


Caregivers have a tough job. It can be thankless and ridden with guilt. It is a job where you have to constantly create balance. A balance between the job of taking care of someone, that someone being a person that you love, and living the rest of your life, your life outside of Alzheimer's.

In the past, I felt horrible anxiety about being a caretaker for Mom all the time. In the earlier stages of Alzheimer's, I worried about her getting lost or hurt. I worried about someone taking advantage of her. I worried about messing up something in her life, a life that I was now responsible for. Would I mess up her bills? Was I truly aware of the toll the disease was taking on her? Had she progressed further in the disease than I realized?

Looking back, I can answer these questions. Yes, she usually was further along in the disease than I realized at the time. Yes, I messed up her bills more than once. Taking care of my own household's bills as well as Mom's was sometimes too much, so I made mistakes. Fortunately, no one took advantage of her that I’m aware of. And yes, she did get lost sometimes, but she never was hurt, thank goodness.

During the earlier stages of her disease, I was constantly worried that I was not visiting Mom enough. When she was living alone or in assisted living, she was still aware enough to know when I was visiting. Often I took her shopping at Target or out to have a simple lunch. Sometimes we walked around the grounds of the assisted living facility, other times we would sit and talk or look through pictures. I treasured these times, but I can still remember the pressure I put on myself to go see her. The anxiety that I had if I hadn't been there in a few days. It was immense. Balancing my life as a wife and mother of two as well as being a caretaker to my Mom was, at times, more than I thought I could take. I cried a lot, mostly when no one was around. I felt like no one understood. It sometimes made me physically ill.

Soon came the stage when she didn't know when I had last been there. So that helped alleviate the anxiety, right? No. At the beginning of this stage, she would cry to the nurses in assisted living saying that she missed me and wondered why I hadn't come to see her. When my sister Morgan would call her, Mom would tell her she hadn't seen me in six months even though I had been to see her the day before. So I felt even more pressure. I was visiting and Mom didn't even remember. Worst of all was that she thought I had abandoned her. Mom was so sad because she thought I was mad at her or I didn't care about her anymore.

Now we are in the severe stages of Alzheimer's disease. I try and visit once or twice a week, but Mom has no idea when I was last there. Some would say that she doesn't even know me anymore, but I beg to differ. She may not have known that I was there two days ago, but most of the time when I go to visit Mom, she is able to let me know, in her own way, that she knows me. I give her my standard greeting of, “Hi Mom! It's me, Molly, your daughter.” Most days her face lights up and she says, “Hey hon!” She no longer knows my name or the meaning behind the word daughter, but I believe she knows that I am someone who loves her. The “hon” that I get is enough. It tells me she knows that I am not a random visitor or a nurse. She feels a loving connection to me.

I am not sure what would happen if I never went to see her again. Just writing those words breaks my heart, as I could never do that, but I know that is how some people handle the loss of the person they once knew. Would she forget me altogether? That is a question that is meant to be left unanswered. I like seeing Mom. I love the way she lays her head on my shoulder when I put my arm around her. I
love touching her soft skin and I would miss hearing her voice. As much as I want to see her every week, in all honesty, sometimes I cannot seem to get there to visit. This past month, I had a two week break when I didn't visit Mom. My “other” life, meaning life with my husband and children, plus the extreme weather, got in the way.

The other day I was thinking about the two weeks that I missed seeing Mom. How in the past I would have made myself sick with guilt because it had been so long since I saw her. This time I didn't feel this way. I guess there were other things that were more pressing at the time. Some might say that I could have found a way and they are probably right. But sometimes in life you have to let some things go to keep yourself well. Unfortunately, this time, visiting my mom was what I had to let go of. Luckily, when I did go see her, she remembered me. Her face lit up and I got a big smile and a “Hey hon!” And when I had to go, as I hugged her and told her that I loved her and that I had to go, she told me not to go far. This was her way of telling me to come back soon. And I will.

Think what you might, but that small break from my mom was something I needed. A brief step away so that I can return to being the best caretaker and daughter that I can be for her. No guilt this time, but refreshed instead. Because sometimes a break is just what we need. And that is ok.


3 comments:

  1. Hi Molly,

    I was so touched by your article as a caregiver to your mother. Wow. The love you have for your mother just jumped off the page. You are so right that sometimes you need to take a break from caregiving responsibilities. I am sure your mother would agree. Taking "me" time is probably one of the hardest things to do when you have a parent living with Alzheimers.

    Like you, I too was my mother's caregiver. It crushed me when she got to the point where I had to place her in an assisted living facility. I was so fortunate she was well cared for and greatly loved by the staff. I was told over and over what a wonderful woman she was and of course I wholeheardly agreed.

    You put is so well when you said "she no longer knows my name . . . but I believe she knows that I am someone who loves her." I knew when my mother took my hand, wrapped her arm around me or just allowed me to put my head on her shoulder she still knew we had a connection and I was someone who loved her. I am so grateful she seemed to know also that I was someone who would protect her as best I could.

    Anyway, I just wanted to thank you for the article and encourage you to enjoy each moment you have to spend with your mother.

    Kim

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  2. My mom passed from Alzheimers. She had it 5 yrs beginning to end. I am the youngest of 3 of her children and lived the closest. In the beginning, I looked in on her or called her periodically throughout the day. As her Alz progressed and we knew she couldn't live alone any longer, my sister, who is the oldest sibling, took turns taking mom...1 month at her house, 1 month at mine. We traded back and forth for about 6 months or so, and by now the traveling (4 hrs to my sisters) was starting to confuse mom. My husband was the most supportive person in the world to me and loved my mom dearly. He said 'lets just move her in with us'. And we did. We had 2 children, one in college and one living at home at the time. My sister promised to come one weekend a month to give my husband and I a little break, that never happened. I kept mom, who was now bedridden, feeding her her meals, bathing her, talking to her, laughing with her and trying to keep a smile on my face through the heartbreak I was feeling inside. Yes, there were many days in that year and a half, that I was sole caretaker, that I would always have a smile for her and quietly walk out of her room at the end of the evening and cry and cry. It was hard when she no longer remembered my name or that I was her daughter, but as you said, I know she knew I was someone special to her and that we had a one of a kind connection. Mom was a special person to all that ever met her. She was kind and so sweet and would help anyone in need. She stayed so kind and sweet to the end. Her personality made it not be as difficult to care for her, as other stories I have heard of the difficultness of some. I was committed to do this for her, to give her the dignity she deserved. Yes, there were stressful days, and nights of not much sleeping, but I knew it wouldn't last forever. Our life was put on hold for the year and a half I had her in our home. But one thing is, I would do it all again if I had the chance, I have no regrets. She peacefully passed one morning after seeing our faces one last time. It was as if she waited for us to wake up and walk in her room. I love her and miss her every day.
    Diana

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  3. Thank you for your comments. It is so hard being a caretaker, but I am so glad that I am able to be that loving individual that gets to see her. It has taught me patience and true unconditional love.

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