Today is significant because things have shifted rather suddenly, and all indications are that I have only about a month to live. On the morning after Christmas I woke with a letter in my mind, and I got up early to write it to our children. When Jim woke up, he read it and wept. When my dad and stepmom awoke, we shared it with them. It was a very tender, sweet day as the kids also responded one by one to the letter they had received.
At first I was going to modify it for the blog, then I realized that you, my faithful readers, have appreciated hearing how it really is. You might as well know the details.
So, I give you permission to “listen in” on the letter that I wrote to our children yesterday morning. Please note that at the end of this letter are some details about the end-of-life decisions I have made.
Dear Paul, Kristin, David & Rhonda,
As I look back over these 18 months, I can see that there were phases of my illness, and there was always a juncture that marked the beginning of the next phase. I remember in October when my steps first faltered, and in April when I could no longer carry on my exercise regimen. A few months later I needed my little “shopping cart” for a few things…then came the walker. There was a similar progression with my speaking.
I never rule out the possibility of a divine healing, but if that doesn’t happen all indications are that we’re at another of those junctures. I believe that the difficulties of this week are indicating that I am entering the final phase of my life. It seems that several of my systems are shutting down.Lung Capacity
On my last visit to the doctor, my lung capacity was measured at 68%. It feels significantly less now. I can’t get a deep breath. Doing the smallest thing causes me to be short of breath. Do you remember as a child after a long hard cry, your body would give a little “after sob”? My body does that often now. I think it has something to do with my lack of oxygen.Swallowing
This week my swallowing ability changed considerably. Last week I did better if there was a little bit of texture to the food. This week, suddenly, I can swallow nothing with texture. Even pureed foods are going down slowly, if at all. I’m going to try the liquid nutrition, but even liquids don't always go.Heart
It doesn’t seem to matter what I do, my heartbeat elevates. Simply turning over in bed will do it. Because we have the clock that shines on the ceiling I’ve been able to monitor my heart rate and count the beats per minute. My normal resting rate is 68-70. Turning over in bed can kick it up to 90 for several minutes. Getting up and going to the bathroom I believe has several times pushed me into Atrial Fibrillation.
As you may remember, for the first two years of my A.Fib. saga, the bouts would occur monthly. Last fall it switched to every three weeks, and then a couple of months ago to every 9-12 days. In these last few weeks it has been much more frequent. This week it happened twice in three days. The trend is clear.Circulation
For several months I’ve been having significant circulation problems, so my lower legs and feet are usually icy cold. My sweet husband is alert to when the heating pad may be cooling off. (This amazing man is a “book” of his own!) Mouth
My tongue is so strange. It’s deeply encrusted with yellow stuff. I read online that this is normal for ALS patients. My breath is bad no matter what I do. My gums are also sometimes swollen. Even my teeth have slid around a little bit, making my bite off. The teeth on the lower left side of my mouth are now tipped slightly out, causing me to bite my cheek several times a day. It makes it hard to manipulate anything in my mouth. Anyway, my whole mouth and throat seem to be crying.Bowels
My bowels have not functioned normally for months, probably because I’m not eating very much bulk and I'm not active enough. Suppositories have been necessary for quite some time to get anything to happen, and they’re not even working that well now.Hydration
I try to drink enough water, but my mouth and throat are excessively dry at night. I’m using the chin strap to try to keep my mouth and lips closed while sleeping, and it helps; but still the last 3-4 hours of the night involve regular swishing, because my mouth becomes bone dry every 30-45 minutes.Strength
I have a few little ways to measure my strength like stepping up from the family room to living room, lifting myself out of the bath, walking up the ramp from the garage, and getting up from the couch in the family room. Yesterday I noticed a considerable difference in coming up the steps at David’s. I could barely get my legs to the next step, let alone exert any pressure to lift. And last night I couldn’t get up off the couch without help. Whereas, one week ago I came up our basement steps unassisted.Muscle control
My drooling has become a nuisance. I just can’t keep my lips together. Also hand muscles revolt at the simplest demand. Just picking up a glass of water or trying to fasten a snap can make my hands contort. Body Weight
My body weight is telling the tale. Over 18 months I’ve gone from 158 (71kg) to 102 (46kg).How Long?
Only God knows how long I have, but Dr. Rolak did say that once a person can’t eat, the maximum is about a month; and that’s if they can take hydration, otherwise about a week. I’m not there yet, because I can still drink and eat a little bit of pureed foods, but these last few days have jolted me to attention. I can see it coming soon.Hospice
We met with two people from the Hospice team and they are ready to begin when we are. We decided to wait until after my January 8th doctor’s appointment. Then we will probably begin with them the next day. That means that we will have regular medical and practical support here in our home. What a blessing!Bright Spot
In a way I’m glad it is turning out this way. All along I have prayed that I wouldn’t have to become totally incapacitated before I died. The thought of living in the “Power Wheelchair” has not been appealing to me. That involves a whole new set of equipment and function, including a van to haul me around. I don’t want to go there--for my sake or Jim’s. I’m happy that I can still bathe myself, and I’m glad I can still easily write on the computer and use my ACD (speaking machine). And I’m exceedingly grateful that my mental capacity is fully intact. So, if the end is coming before these things also fade away, I see it as another BIG blessing.Smile
Jim and I have a little private joke. Here’s how it goes:
Jim: “Are you praying for healing? Because God seems to be listening to you!”
Me: “Of course, I pray every day for healing. I DO want to live.” (He always teases me saying that maybe I want more to be in heaven than to be with him. Smile)
Jim: “So what is God saying back to you?”
Me: “He always says the same thing to me: ‘You’re in my hands…trust me…I love you.’”
Jim: “Well, I guess we’ll have to wait and see.” (At this point I usually get a big hug.)
Well kids, it all comes down to TRUST, doesn’t it? Let’s continue to trust Him together.
Thank you for the loving support you have been to both of us throughout this whole story. You’re the best kids in the universe!
Mom Now to My Blog Readers
My end-of-life choices:
Since the beginning, my doctors have been open about the choices we would need to make. Some ALS patients opt to be attached to life support: feeding tubes and ventilators. After hearing all of the details, I (with my family’s support) have chosen not to have those for two major reasons. First, because they often introduce other painful complications, like pneumonia and infections. Second, because at some point one of my loved ones would have to decide when to have me unhooked from the machines. I don’t want either of those things. It was surprising to learn that choosing not to have a feeding tube is the least painful way for an ALS patient to die. Because the amount of food decreases gradually, there is no sensation of hunger, and no pain. The patient just becomes sleepier. This is the gentle, natural way to go. It seems right for me.
P.S. I had fun buying the grandkids' gifts this Christmas! :-) (The girls were here at Thanksgiving time, but we were with the boys on Christmas day. Fun stuff!)
Jolene got a personalized peg board.
Elliana got a personalized ladybug backpack.
Micah got a personalized train.
Levi got a personalized train backpack.
Reuben got a personalized lunch pail.
P.S.S. It's just lovely that my dad and stepmom could be with us for this whole holiday season (Dec. 22-January 3). We're having a relaxing time, and have played Mexican Train Dominoes several nights. Oooo-eeee I got beat really bad! (smile)