Two years of blogging

I missed my blogiversary. It was Jan. 14. I didn’t realize I had missed it until last Wednesday, which was Jan. 26. I was driving to support group, wondering what I might talk about, and realized that here it was, January, and that this is the month during which I started the blog two years ago. I have gone over before the reasons I started the blog. Mostly, I was a mess at that time. Really stressed out, consumed with Mom’s care and especially her financial situation, feeling very alone and upset a lot of the time. And I thought maybe, just maybe, others in similar circumstances could benefit from a no-nonsense report about the disease. Blogging has definitely been a therapeutic activity. Not just the act of writing about Mom and my emotions about her, but because it has really helped me redirect my thinking about this part of Mom’s life and my life.

I felt so sorry for myself in the many months leading up to and after Mom’s Alzheimer’s diagnosis. I was concerned for Mom, but I could see plainly that I was going to be stuck looking after her. That is how I thought about it. But over time, and especially while reflecting about Mom in this blog, I have come to actually value this experience, or at least to stop hating it and thinking about myself so much of the time. I have learned a lot about what might be going on in the Alzheimer’s mind, and have had the chance to consider the hell that Mom must have been going through in the early months and years of her illness. How frightening it must have been, and how deftly she really handled it, all things considered. So much sucks about it all, no doubt about it. But I try not to dwell so much on that, and instead try to be a cheerful and comforting presence in Mom’s life. And at this point, that is what she is in my life.

All that said, I had a somewhat disappointing visit with Mom today. I found her sitting with Mr. R on a couch in the program area. I approached the couch and said hello, and she greeted me, but not with any particular enthusiasm. I pulled up a chair to face her and plopped down. She spoke off and on, but in her typical nonsense fashion. She had one sock on, and I noticed that her bare foot looked a little crusty, like she has probably developed a fungal condition. I asked her how she’s been feeling, and even that didn’t yield a normal answer. The last time I saw her, her lips had been very chapped. They looked better today. I asked her if her lips feel OK. She didn’t seem to understand. I pointed to my mouth and asked her if her lips hurt. She really didn’t understand. And then she asked me, out of the blue, where my house is. I told her it’s about three miles away, not too far. And she nodded, but I suspect the answer wasn’t meaningful – does she have any idea what a mile is?

Mr. R ignored me. He rubbed the skin on his arms over and over, and studied his hands. I think his skin is irritatingly dry. But he wasn’t scratching; he was rubbing. He rubbed his fingers. Just once or twice, he rubbed his legs. He also removed his upper teeth at one point. “Do you need more room?” Mom asked him. His rubbing was making a lot of noise, and his arm was bumping into her. He didn’t respond.

Across the room, residents were watching a movie on DVD. We could hear the music from the movie. At one point, people in the movie were singing “Amazing Grace.” I asked Mom if she could hear the music, and I sang a few lines of the song. She didn’t seem to understand the question, or at least she couldn’t produce a meaningful response. One thing Dr. Liss, who runs support group, tells us is that Alzheimer’s is primarily a failure of retrieval. So I guess Mom occasionally can make sense, like asking me where my house is, but can’t always find the words to form a proper response to a question I have asked. The good thing is, she doesn’t seem frustrated by this. And I trust she has no idea that that is what her main limitation is – because can you imagine, having all that information still in there but being unable to access it, and being aware of that? She sat as peacefully and contentedly as always, with her hand on Mr. R’s leg much of the time.

After about half an hour, I decided it was time to go. I asked Mom if I could hug her goodbye, and she said yes. She then said, “Maybe you should come back sometime and we can play.” And I said, “Yes, playing is always a good idea.” She said, “Monday, then.” And I said, “OK, I’ll see you then.” I enjoyed this little exchange. On the way out, I paused to talk to a resident and her daughter – this resident was a good friend of Mom’s in assisted living, and she just moved to the Alz center a few weeks ago. The daughter told me that her mother recognized my mom, but Mom, not surprisingly, doesn’t recognize her. While we were talking, Mom and Mr. R walked by. Several minutes later, I headed down the hall toward the lobby. Mom and Mr. R had turned around and were approaching me. Mom did not make eye contact or look in my direction. Mr. R waved at me.

I decided Mom didn’t really recognize me today. That left me feeling bummed, but I know enough about the ups and downs with this disease that I am aware that her lack of recognition of me today isn’t necessarily a permanent thing. So I’ll just see what happens next time.

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14 comments so far

  1. Elizabeth on

    I just caught up with the blog a few days ago, and I’m glad the two year mark poses another positive moment of reflection. It’s great to see the blog offering help and support to so many people, not least of all, of course, to you and your approach to Bonnie’s situation. The beautifully written (and no-nonsense at the same time) work/therapy/reflection that you do here is really inspiring.

  2. mirroredImages on

    I love reading your blog. You’re masterful in your details and analysis of the situation. I’m glad the blog has helped you come to terms with the situation and even appreciate the journey a bit.

  3. Katie Mathews on

    Emily~ You are a brilliant writer and I have loved following your blog for the past two years. They have made me laugh and cry. I am so sorry for the pain you are going through with your mom with this terrible disease. I have watched my grandfather from a distance go through a similar disease for 12 years. Please know that you are always in my thoughts and prayers.

  4. Lesley Austin on

    I, too, so appreciate what you write here, Emily. Sometimes your peace brings me peace, your acceptance brings me the same, your frustration makes mine ok, etc.

    I found your last post very moving. I am catching up here, as new little changes in my mom have kept me busy and I have lost the thread a bit online, but am picking it up again.

    Will be here reading just as long as you keep writing,

    Lesley

  5. momsbrain on

    Elizabeth, Julia, Katie: Thanks for being so complimentary about the writing and for the support.

    Lesley: That is exactly what I hoped, that readers who are experiencing the same things might find some comfort in knowing their feelings are not unusual or wrong.

  6. Sherri on

    I’ve really learned a lot through your blog. I have not been close to an Alzheimer’s patient. I do know others who found you – either through my blog or another avenue – and they have commented on how you’ve helped them (and some are home dealing with special needs kids – one has a family member who is sort of where your mom is now – others are just dealing with new experiences in life and appreciate another perspective). I, of course, just like reconnecting. Congrats on two years. I am sorry about the last meeting with your mom bumming you out a little but so happy to see your optimism and to hear that, next time, she may know you as her best person again. Seems you made her happy regardless :-).

  7. momsbrain on

    Hi, Sherri – It’s true, Mom is happy for the social interaction even if she isn’t quite clear about who it is with. I wanted to see her again yesterday, but the weather was too icy. I’m wondering if more frequent visits might make a difference. Hard to tell. Thanks for writing!

  8. patwhite67 on

    Emily,

    I just want to thank you for the privilege of reading your blogs over the past year or so that I have known about them. Your willingness to share your experiences with your mom, both the good times and the not so good, has been most helpful to me and a strength in dealing with my own mother’s dementia.

    Sending a hug, Pat

  9. Jennifer Jayhawk on

    Emily,

    Your writing is beautiful, amazing, heartbreaking and heartwarming. I like the others have learned so much from reading your blog.

    Thank you for sharing your journey with your Mom.

  10. momsbrain on

    Pat, thanks for the hug! I’ll take it!

    Jennifer: Thanks so much for your kind words. I learn from reading your blog, too.

  11. margaret massey on

    Happy anniversary!

    I really enjoy your blog and at first was concerned that you were going to say you were letting go of it.

    Was glad to find out that wasn’t the purpose of this post!

  12. momsbrain on

    Thanks, Meg! No worries – I think I will continue to blog for quite some time. I don’t post as frequently as I used to, but I definitely want to maintain it.

  13. JudyDearing on

    Emily – I also agree, I resonate with your words. It is a beautiful post. I began blogging about Chrissy for myself, to try and look for anything good going on. I keep thinking about your words. “it sucks!” So very true. On one ofthe latest posts on Alzheimer’s Reading Room there is a link where you key in the day (or thereabout)you first began as a caregiver and it computes the number of days! For what purpose I might want to know this, I don’t know.

  14. momsbrain on

    Wow, Judy, that does make me curious. I know the approximate time in years – but days! Yikes! Thank you for commenting!


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