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Still Alice (Thoughts After Watching)
Posted: Tuesday, February 9, 2016 7:18 PM
Joined: 11/20/2015
Posts: 47

I just watched Still Alice.  Much of it is encapsulated, it’s impossible to tell the story within the timing of a movie.  But in it, I see snippets of my family.

My dad died over 20 years ago from cancer.  My mom took care of him, primarily by herself until the end almost.  My husband and I helped because we lived closest, but my mother lived it.  It never occurred to me that we would live it again, that I would live it.

It’s been 4 years since I was told my mom had dementia.  I remember telling family to thank God that it wasn’t Alzheimer’s.  For that first year, I and my aunts took care of her.  Then my aunt decided it was too much and she gave me a couple of weeks to make a plan for her.  My sister moved home from Pennsylvania to help.  People talked about my sister and her family overcrowding mom’s house, taking advantage, etc.  It makes me mad, she’s living in very tight quarters, difficult situations to help care for our mom.  Our other sister can’t handle it so she comes down every few months to spend a weekend with mom.

Some of the things that happen are so funny.  I laugh because if I didn’t, I would cry.  I don’t let myself think about all of the things, even now.  My mom, once so strong and independent now needs me for the most basic of tasks.  This weekend past, I realized that she couldn’t figure out how to use the bathroom.  So I gave her a laxative and waited for it to work.  We didn’t realize she couldn’t figure it out, and she couldn’t tell us that she was uncomfortable.  I apologized to her over and over, I felt like I was failing her.  I should be able to do better for her.

We have an aide that comes Monday thru Friday.  I’m home with the flu but next week I will go out and buy a new bottom mattress for her bed so that it’s lower to the floor.  She can’t figure out how to climb up into the bed.  She’s pretty frail now physically, bent over.  She nods off if she sits in any place more than a minute or two.  Getting into the car is starting to be a challenge.  She mumbles now too and she can barely see.  She has times when she can still do things but I can see she’s sliding faster.  She still likes to go to church and the ladies there take care of her; they visit the nursing home to render service once a month.  A nursing home is probably coming sooner for my mom than I’d like to consider.

I took her to the doctor last week.  She has something called a parvovirus.  The doctor says she’s got RA now too.  Her joints are swelling.  Sometimes I think it would be better if she were to pass on, then the selfish part of me realizes I’m not ready to let go of my mom.  She tells me that she feels like she’s slipping away, but she said that she’s not ready yet.  Neither am I.  In the movie, Julianne Moore tells her husband that she wishes she had cancer instead.  For me, I think I would wish for cancer instead as well.  

When I go to check on my mom in the mornings, just before I open her bedroom door, there is a moment of fear.  She lays there without moving, her mouth slightly open.  I always call out to her before I approach.  I don’t know what I would do if she didn’t answer.

My husband asked me again this weekend about a nursing home.  I want to scream at him.  Why is he pushing me?  Instead, I just told him that a nursing home is a shameful thing in my family.  I will care for my mom as long as it’s safe for her and as long as I’m physically able to do so.  

Posted: Tuesday, February 9, 2016 8:53 PM
Joined: 8/6/2015
Posts: 1736

So many things to consider. Thanks for sharing with us.  A nursing home was 'shameful' in my family as well.   I later realized that it was necessary for my family and marriage. I could be a better daughter, making sure she was cared for  and doing nice things for her....instead of just wishing she would go to sleep so I could have a moment of peace and not be worried if she was going to fall. Stress takes it toll on your body. Please take care of you first.

Shameful is when a loved one is in a nursing home and no one acknowledges them with a card or a visit or call. 

Jim Broede
Posted: Saturday, February 13, 2016 9:02 AM
Joined: 12/22/2011
Posts: 5462

Maybe it sounds selfish. To take care of one’s self. First and foremost. But that’s the art of good care-giving. I learned it late in the game. I was Jeanne’s 24/7 care-giver. For far too long. I was exhausted. Physically. Mentally. Emotionally. Fortunately, I saw the light. In the last 38 months of Jeanne’s life. When I put her in a nursing home. Without abandoning her. Because I was there. Daily. To tend to Jeanne. For 8 to 10 hours. Until I put Jeanne to bed. That allowed me to go home. For my vitally needed respite. So I could return the next day.  To take Jeanne out. In a custom-made wheelchair. Yes. Every day. Even in Minnesota winter. Tucked in a thermal sleeping bag. I also hand-fed Jeanne. In the quiet privacy of her room. And gave her nightly showers. Exuding good vibes. All the time. That didn’t always happen. When I was 24/7. When I didn’t bother to take care of myself. First and foremost. So that I would be ready and prepared to take care of Jeanne. The proper and sane way. Wish I knew this. From the beginning. Jeanne would have been better off. So would I. Maybe your situation is different.  But give it some thought. Are you really doing what’s best for mom? And for you? --Jim


Jim Broede
Posted: Saturday, February 13, 2016 1:58 PM
Joined: 12/22/2011
Posts: 5462

The nature of the nursing home changed dramatically. When I showed up. Every day. For 38 months. Without a single miss. I was on the scene.  As Jeanne’s advocate and protector. I personally saw to it. That Jeanne’s needs were met. If I had not been there, Jeanne would have received one shower a week. I gave Jeanne a shower. Every night. Just what she was used to. At home. If I had not showed up, Jeanne would have been fed in the congregate dining area. I took Jeanne into her room. And hand-fed her. In quiet, peaceful environs. If I had not been there, Jeanne would have rarely been taken outdoors. I brought her out…in a wheelchair…every day. No matter the weather. Dressed appropriately. For the weather conditions. Jeanne always loved being outdoors. No reason to deprive her of that.  Most days, I pushed the wheelchair for 5 to 10 miles. Made round trips of six miles. To our home. Especially in the summertime. So that Jeanne could sit at the lakeside. And enjoy having our pet cats. On her lap. I took her to the hair salon. Regularly. For her customary  hair sets. Jeanne got special attention. As everyone should.  Giving her the attention was a snap. After going 24/7 for years and years. Eight to 10 hour days. Seemed so easy. So gratifying. So fulfilling. Yes, it can be done.  Reasonably. Without exhausting one’s self. I thrived. I saw Jeanne thriving, too. She was being immersed in good vibes. And she knew it. So did the nursing home staff. It was a team effort. I was team captain. Unfortunately, not everyone at the nursing home had a personal advocate and protector. Though I often tried to intervene. With varying degrees of success. My prime focus, of course, was on Jeanne. My true love. --Jim