Sunday, February 28, 2010

I Don't Like Change!

Those of you who know me very well know I'm definitely a person of routine. I don't always do well with change. Unfortunately, my life has been full of changes the last couple of years, and it hasn't ended yet!

We're still believing and trusting for a miracle of healing for Don, but, in the meantime, we're dealing with reality. He's slipped a bit again the last couple of weeks. We're getting close to the time (probably within weeks) of his not being able to use his rollator to get around in the house anymore. It simply wears him out. Also, he has given me permission to order a couple pair of pants for him with elastic in the waist. He thinks that might be easier for him when he goes to the bathroom. He's been having a harder and harder time getting his pants pulled up after using the toilet. He also has asked me to get him a urinal, so he doesn't have to completely take his pants down every time. Maybe that's plain talk for a blog, but our life has become a "plain talk" life! It makes me sad to see him slipping, and I don't want him to see my sadness. Sometimes, not showing that I'm sad is even harder than being sad in the first place!

What can I say? Life goes on. I continue to do what I can to make life simpler and easier for him, even if it means that more and more of my own day is being gobbled up by his. I still say that's what love is all about.

Thursday, February 25, 2010

Getting on a Schedule

We're almost a week into Don's treatments, and I'm pleasantly surprised at how well things have been going. He's learned the process well, so he reminds me if I'm about to forget a step. That's very helpful. My biggest problem has been time management. I have to get it in my head exactly how much time it takes to give a treatment - start to finish. My "getting up" time has to allow for the treatment, and then give me time to shower and prepare for my day (Sunday was a real kicker).

On top of what Don's going through with the ALS, he had to have a tooth extracted on Tuesday. I was afraid that might be a big deal, in light of the treatment he's getting. Not to be. He did beautifully. The first night, he complained of some discomfort, but it's all been a breeze since then.

Have I mentioned on here within the last 24 hours that I love my husband? He's such a super guy. Honestly, I think we make a good team - one of the best!

Saturday, February 20, 2010

The Day After

Don had his Hickman Catheter inserted yesterday. The procedure itself wasn't long (about 1/2 hour), and time in the recovery room was only about an hour. They couldn't order the medication vials until the surgery was completed, so as soon as Don got into the recovery room, our attending nurse called the pharmacist. We expected the meds to arrive in an hour to 1 1/2 hours. Then, I was to inject Don with the meds, they were going to watch him for 3 hours, and we would come home. It was going to be a long, long day. Both Dondra and Jeff came to the hospital to spend the day with us, and we absolutely loved spending the exclusive time with them. As it turned out, we sat and waited about 3 to 3 1/2 hours for the meds to arrive. Jeff and Dondra left to come home about 4:15, and the meds arrived about 4:30. I injected Don. Everything went well. The nurse made us stay until almost 6 p.m., then decided we could come on home.

The evening was uncomfortable for Don. He could feel where the tube was inserted in his jugular vein, and every time he tried to turn his head it would pull. I tried to make him as comfortable as possible for the night. This morning, when he got up, he was a new man. It's not bothering him much at all today. I'm so thankful, because I hate to see him suffer. He isn't a big complainer, so I know, when he does complain, that he has taken things about as long as he can. It's been a good day. We picked up Mom and ran around a bit, and he has done well.

I did my first injection of the meds totally on my own this morning, and things went quite smoothly. Hurray! . . . and they all lived happily ever after!

Thursday, February 18, 2010

I'm a Bit Nervous

Tomorrow, Don goes to have his Hickman Cath inserted in his chest for the clinical research trial for ALS that we've decided to be a part of. He doesn't seem very concerned at all. I have taken training in administering the twice daily medication. After they insert the cath tomorrow, I will be injecting him with his first round of medication. I'm nervous as a long-tailed cat in a room full of rocking chairs! I'm assuming the doctor, assistants, etc. will still be in there watching me as I do it. What if I make a mistake - a STUPID mistake. I'm certain they would call it to my attention. I just hope they do it in a kind and understanding manner. I think, once I've done the procedure by myself a couple times, I'll be much more comfortable with the whole idea. Until then, I'll sure be glad when tomorrow is over and I have one session under my belt.

Tuesday, February 9, 2010

Another Day in Paradise

I'm feeling especially blessed today. Don has slipped a bit more this past month, and that makes me sad. However, he handles it with such grace and courage. I hardly see how I can complain when he's so "up" most of the time. I was reading some old posts in my journal and saw that he had just started having to use a cane less than a year ago. He now uses a rollator fulltime in the house and his powerchair outside the house. Dry those tears! We're not feeling sorry for ourselves. We're so blessed that he still has upper body strength and is able to do the things he does. A sister-in-law told me the other day that she prays for me daily, and she feels "so sorry" for me. Stop that! I do need the prayer support, but I'm not really looking for sympathy. A little encouragement now and then would be nice!

So, life goes on. Some days our smiles are painted on. The facade looks nice, but the foundation is cracking. Not today. I have the joy of the Lord in my heart.

Speaking of which, a young girl at church has been going through some fairly severe psychological trauma. She's a brilliant and beautiful young woman. One night, during a sweet service at church, she very discreetly slipped up beside me and prayed for the Lord to place a joy in our home that people just wouldn't understand. I believe that's happening. I returned that prayer in her direction, and she says she's been experiencing little bursts of joy in her life as well.

God is good, and his blessings are everywhere. Sometimes we just have to move some of our "stuff" to find them!