Rambling thoughts

Tom had another round of botox injections on Tuesday. The doctor had some interesting things to say about some of the research he has done into ALS about the relationship between the patient and caregiver/spouse. I realize that Tom and I have something very special that isn't necessarily the norm--but there is a very special intimacy in caring for someone and them allowing the care to be given. We're all so different but we are finding what works for us.

Chaplain Steve visited Friday morning. He gives the gift of listening! We found out that we had all been to some of the same places in Australia years ago. He was a part of the Uniting Church in Australia which is the denomination we attended while living there for a year.

Friday night Tom fell in the bathroom, hit his head and had and had a small cut on it. I heard the fall out of a dead sleep and went running. I've asked him to tell me when he needs to get up but he doesn't always do it.

Saturday was our ALS support group. Kemp went with us. He enjoys bringing humor to the group and talking with everyone. When I told the group that I had given Tom his first haircut this week Kemp took off Tom's hat to show everyone that they probably don't want me to tackle their heads--there was the big bandaid I put on from the night before's accident. I didn't realize that the bandaid I had chosen was quite as big as it was OR that it was made to look like DUCT TAPE! In the middle of the night I just wanted to cover up the blood. We all got a good laugh.

Later in the day Tom wasn't himself and I was getting concerned that he had either had another stroke or had a concussion from the fall. I called hospice to send a nurse--what a great benefit having them! The nurse thought Tom was okay but suggested I watch him every couple of hours during the night and report any change. We were awake alot--saw every hour except 5 so needless to say by the time it was time to get up to feed Tom at 7:30 we were both pretty tired. We regretted not having the energy to make it to church--we miss seeing everyone and having a chance to worship together. We slept off and on all day to catch up. I have begun to read again--just couldn't do it for a while--so am enjoying having time to just sit and get engrossed in a good book. Sunday night we slept good again.

Monday--our social worker stopped by to see how we are doing. We enjoy her visits. She has arranged for Tom to have a massage therapist come and visit. (I asked if I could have one, too, but the answer was "no"!) She also has arranged for a handicap parking card--all these things that are so helpful and we don't have to figure it out. Quite a gift. After lunch I went to Curves for the first time (a new insurance benefit)--going to work on regaining strength and stamina. Then Tom went with me while I ran a couple of errand,s--it felt good to get outside. Then I went to meet a friend for dinner and we talked nonstop for 2 hours--boy, did that feel good. Now I am home, Tom is settled in for the night and I am going to catch up on the ironing--Tom is enjoying wearing flannel shirts--I am enjoying keeping them ironed and fresh.

Latest lessons--Recently when I thought what I was feeling was lonliness I found was more grieving--this time over life as we have known it in the past--full of people and activities. It was another hurdle to get over and find that where we are now is more like a hermitage for Tom and me. Our lives are full but in a different way--slower paced but still very full just taking care of daily needs.

Another lesson--in the middle of the night I was thinking about the 23rd Psalm--a place of great comfort and instruction. The Lord is my shepherd (Lord, shepherd me, shepherd us). I shall not want (a place of perfect contentment). He makes me lie down in green pasture (a place where all physical needs are met--food, comfort, beauty, rest) He leads me beside still waters. (not stormy, wind swept waves but still waters--a place of emotional peace). He restores my soul. (Spiritually He just keeps bringing me back to Himself with the reassurance He will never leave or forsake us.) And with that I went to sleep feeling like God had given me new thoughts about something so familiar. What a great God we serve.