Happy Turkey day

Well Thanksgiving was quite an event! Mike took care of everything and he entertained nine people at our house. The food was fabulous, the company was comfortable, we had good conversations, we drank some good wine and we ate until we were stuffed.

Mike is a southern boy so we have to have turnip greens, cornbread, and Black Eyed Peas. Of course there was Turkey, ham, sweet potatoes, casseroles, Mac and cheese, and all sorts of pies and desserts. When I was growing up Thanksgiving dinner was a little bit more restricted. I recall Turkey, gravy, mashed potatoes, peas (what Mike calls English peas), rolls, and cranberry sauce. All finished off by pumpkin pie or pecan pie and a nap!

I definitely got a nap!

One thing I’ve noticed about ALS is that I’m consistently tired. The docs say that this has to do with my muscles working harder to accomplish the bare minimum. Since I’m retired I don’t really need an excuse to take a nap. And I try to enjoy one whenever it’s needed. I guess I missed out on some of the gossip while I was sleeping but that’s OK.

Since my last blog there have been a few developments in my care. I now have home health coming in to do physical therapy and occupational therapy three days a week. That makes things a lot easier than trying to get out of the house. The VA has ordered Dragon Naturally Speaking, which is dictation software that I’m familiar with using in the VA. That should make my correspondence easier, filling out forms, etc. My adaptive equipment has been ordered, Mike has gotten his training on a portable Hoyer lift, we’ve gotten approval for a platform lift to help me get in the house, and financial assistance to get a wheelchair adapted van. Like I said in a previous post, ALS comes with a lot of “stuff.”

Here’s a link for a Hoyer lift if you’re interested: Joerns Hoyer Advance Portable Patient Lift – MFI Medical. I’m including this as an example but I’m sure that VA is not buying this expensive hoss!

During this family visit, I sat down with my son and daughter and had a conversation about my last wishes. That’s a tough conversation to have in any situation, but they want to know. Mike and I have already filled out my advanced directive, medical power of attorney, and other necessary items. I talked with the kids about where I’d like to be buried and there were tears all around. I never thought I would have to have these conversations, but I also realized that many people don’t get the opportunity to discuss what they want in their final days. I’m doing my best to consider this a blessing that I get to have these conversations. My grandson was also here during Thanksgiving for a visit and he kept talking about if I was worried about going over the bridge, and I kept saying what bridge? Well he was referring to dying, so I had to have a talk with him about using that word. It’s OK to say “Grandma how do you feel about dying?” Another conversation I never thought I would have to have but I’m also grateful I get the opportunity to talk about it. I hope that my journey can be one that’s peaceful and that my family gets to share fully with me. One of my best friends shared her last years with cancer by writing group emails every week or so about her journey. She inspired me through graduate school with the way she handled dying quite gracefully. I would hope that someday I can do as well as she did. Her name was Susan Gerretsen, and in her last years she taught me a lot about living and dying.

 Susan always made a point to identify the beautiful things going on in her life. At the time, I thought it was interesting that she chose to balance out the challenges of chemotherapy and radiation with the beauty in her garden and the wildlife around her home. Now that I’m going through this ALS journey, I realize how much beauty is going on around me. I could feel envious (and I do sometimes) that other people can walk, and run, and dance, and pull themselves out of a chair; or I can feel grateful that I have everything I need, a beautiful place to be, nature and wildlife all around me. Hummingbird season has finished and ladybug season has begun. If ladybugs are a sign of good luck then I should be drowning in good luck, because they’re everywhere. My neighbor has been putting out feed for the wild deer and they have been showing up, including a couple of eight point bucks. Even though the weather is cooler and the leaves are falling, the view is absolutely stunning. So, Susan taught me a lot about appreciating life.

No one knows for sure how much time we get with ALS. I’ve seen estimates from three to five years, three to 10 years, and some rare examples when someone can live decades with the disease. I have no way of knowing if my journey will be a short one or a long one but I’m beginning to reflect on what a wonderful life I have had. I remember thinking that I want to live my life without regrets, and for the most part I think I’ve done that. The regrets I do have are about being short-tempered, spending time away from our kids, and not letting people know how much they mean to me, and how much they have changed my life. I have been extremely lucky and I don’t expect that to stop anytime soon.