What a beautiful day today. Don't know what the temperature was but it was warm enough to work in the yard in a t-shirt. The sun felt so good. It felt good to dig in the dirt and get ready for summer. We got walkie-talkies so I can be outside and Tom can still call me easily.
We're on another plateau--we know how to deal with what's going on, no crisis, and Tom is feeling pretty good. One of the clearest ways I can know that is when I see his smile and it's been showing up more often this week. Oh, he's still dealing with alot but none of it is unfamiliar so it doesn't seem as bad as when it first showed up.
We continue to be so very grateful for Hospice--they are making it possible for me to continue to care for Tom--don't know what we'd do without our wonderful team.
In my last post I wrote that I am loosing my protector. I was wrong. I can never loose the One who is my Savior and Lord. He has given me my father and my husband--two amazing men--and for that I so very grateful. They have been wonderful gifts here on earth but ultimately all earthly things will pass away but our relationship with Jesus Christ will last for all eternity.
I am reading two excellent books. "Nobody Tells a Dying Guy to Shutup" is Dave Chilcoat's journal which was begun the day he was diagnosed with ALS. He has a wonderful sense of humor and a compelling honesty. He's helping me understand the disease from a different perspective. I highly recommend it. The other book is written by Ken Huterson who is battling cancer. It's called "Hope is Contagious." I'm not very far into it but Ken has a gift for honest sharing, too, and I look forward to reading it.
Friday, March 19, 2010
Saturday, February 27, 2010
A month latert
Another month has gone by. The biggest challenges have been infection and bleeding in Tom's trach. This week we saw the doctor who perfomed the surgery. He checked everything out and said it's not unusual for it to take several months for the body to heal. Today (Saturday) Tom is doing MUCH better--infection gone and not sign of bleeding! YEAH! Many have prayed and we are very thankful.
There have been some deep valleys this month. I had a horrible dream that I was being chased by someone. I was very frightened because knew I couldn't outrun him. He finally caught me and had a very scary face--that's when I woke up. I couldn't get the dream out of my mind and felt it had some meaning but didn't know what. (I needed Vanessa to interpret it!) Then it came to me--I am loosing my protector and there's a feeling of vulnerability. Two men in my life have given me so much security--my father and my husband. Hadn't consciouslythought of it until that dream. I've also been reminded that when the tears start and feel like they will never end that they actually do end and good days come again.
Today Kemp spent the day with Tom while I had a day out with girlfriends. We enjoyed painting ceramics and then eating together. The laughter was the best. It felt so good--can't wait to do it again. It's hard to leave Tom but I know it's important to stay healthy and spending times with good friends is very healing.
Hard to believe it's been a whole year since Tom was first diagnosed.
There have been some deep valleys this month. I had a horrible dream that I was being chased by someone. I was very frightened because knew I couldn't outrun him. He finally caught me and had a very scary face--that's when I woke up. I couldn't get the dream out of my mind and felt it had some meaning but didn't know what. (I needed Vanessa to interpret it!) Then it came to me--I am loosing my protector and there's a feeling of vulnerability. Two men in my life have given me so much security--my father and my husband. Hadn't consciouslythought of it until that dream. I've also been reminded that when the tears start and feel like they will never end that they actually do end and good days come again.
Today Kemp spent the day with Tom while I had a day out with girlfriends. We enjoyed painting ceramics and then eating together. The laughter was the best. It felt so good--can't wait to do it again. It's hard to leave Tom but I know it's important to stay healthy and spending times with good friends is very healing.
Hard to believe it's been a whole year since Tom was first diagnosed.
Monday, February 8, 2010
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.
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.
Tuesday, January 26, 2010
Together we're 141!
It's been almost 3 weeks since I last wrote and I have no idea why it's taken me so long. Celebrated a wonderful 65th birthday/retirement on the 10th. The whole family was with us for church that morning--best birthday gift ever. Then on the 17th we celebrated Tom's 76th birthday with a family game of dominoes. He handily beat us all!
I'm learning to hold ALL I have in an open hand, knowing it's all God's anyway. Just when I think I have met that challenge something else comes up and I learn I've still got a ways to go.
We met with the surgeon on Monday and he is very pleased with how Tom has healed. We are delighted that there have been no more runs to ER. We're on another one of those plateaus where we know how to deal with all that is going on. Tom is on a good sleeping med that has no hangover feeling. The neck has healed well and I know how to take care of it. The next challenge I see coming is Tom's strength. He is having more difficulty getting in and out of bed and off the couch. I am looking into getting a lift chair for him. I've suggested he start thinking about a hospital bed that will be much easier to get in and out of and we can regulate it to a comfortable position. He's not ready yet so we will wait until he is comfortable with the idea.
Tomorrow Kemp is taking Tom to the aquarium. They will use the wheelchair for the first time. I am very proud of Tom for being willing to use it to make getting out easier.
He's also talking about wanting to get out and see people so I will set up some "dates"--trying for mid day to make it easier for him. I am so glad he is feeling like he wants to do something other than just be home. We also look forward to visits from friends and the hospice staff. Today the chaplain visited and we enjoyed him very much. His name is Steve Poole--just like the weatherman--easy to remember. We look forward to getting to know him better.
I'm learning to hold ALL I have in an open hand, knowing it's all God's anyway. Just when I think I have met that challenge something else comes up and I learn I've still got a ways to go.
We met with the surgeon on Monday and he is very pleased with how Tom has healed. We are delighted that there have been no more runs to ER. We're on another one of those plateaus where we know how to deal with all that is going on. Tom is on a good sleeping med that has no hangover feeling. The neck has healed well and I know how to take care of it. The next challenge I see coming is Tom's strength. He is having more difficulty getting in and out of bed and off the couch. I am looking into getting a lift chair for him. I've suggested he start thinking about a hospital bed that will be much easier to get in and out of and we can regulate it to a comfortable position. He's not ready yet so we will wait until he is comfortable with the idea.
Tomorrow Kemp is taking Tom to the aquarium. They will use the wheelchair for the first time. I am very proud of Tom for being willing to use it to make getting out easier.
He's also talking about wanting to get out and see people so I will set up some "dates"--trying for mid day to make it easier for him. I am so glad he is feeling like he wants to do something other than just be home. We also look forward to visits from friends and the hospice staff. Today the chaplain visited and we enjoyed him very much. His name is Steve Poole--just like the weatherman--easy to remember. We look forward to getting to know him better.
Tuesday, January 5, 2010
Be still and know
Woke up 3:00 am on Sunday morning with a very stuffy head and an upset stomach--bummer! My first concern was, please, Lord, don't let Tom get sick. We stayed home from church--again. Oh, how we miss being there.
Tom's neck is getting better every day--a huge praise! Today he said that he is feeling bored. Not surprised since his wife has been mostly in bed for 3 days. That's good he feels bored because that says he's not focused on a health issue but wants to do something. Hopefully I will be on the mend very soon and we can start getting out of the house a little bit. We're both feeling a little house-bound I think. We've got to figure out this new both-retired-life of ours--our latest challenge. I'm struggling with emotions but don't know how much of it is just being tired and sick so I'll wait to deal with them at another time.
Tom just got up to tell me that he felt really good! Those were really good words to read! Hoping for more of that.
Psalm 46 was sent to us by a friend this morning. I don't want to forget these words: The very first verse says, "God is our refuge and strength, a very present help in trouble." Very is a Hebrew word meaning: exceedingly, might, force, abundance; with muchness, muchness. Present is a Hebrew word meaning to appear, to be recognized, to be present, to prove to be, to be found sufficient, to be enough. so God is a mighty force. . .with much muchness, He is sufficient in our troubles!! He has proven to be enough. We are living epistles that God sends to share with others of the goodness of the Lord, to share the truth of why we know God to BE an Ever Present help in trouble. God is right in the midst of our lives, and all we face with that, we should not be moved from believing HE is ENOUGH. We will see His light dawn through the darkness, His help at break of day! Psalm 46:5: "God is in the midst of her, she will not be moved: god will help her when morning dawns."
So no matter what we are going through; no matter what we are facing; no matter what we are feeling. . .be still and know He is God. He, God the Father, jesus the Son of God and God the Holy Spirit is enough. God wants us to really believe this to the very depths of our being. How differently we might act if we truly believed this.
Psalm 46:10-11 "Cease striving and know that I am God; I will be exalted among the nations, I will be exalted in the earth." The LORD of hosts is with us; the God of Jacob is our stronghold."
Our friend finished with the words to a song of praise:
"Hide me now under your wings, Cover me within your mighty hand
When the oceans rise and thunders roar I will soar with you above the storm
Father, you are King over the flood. I will be still and know you are God
Find rest my soul in Christ alone
Know his power in quietness and trust"
Tom's neck is getting better every day--a huge praise! Today he said that he is feeling bored. Not surprised since his wife has been mostly in bed for 3 days. That's good he feels bored because that says he's not focused on a health issue but wants to do something. Hopefully I will be on the mend very soon and we can start getting out of the house a little bit. We're both feeling a little house-bound I think. We've got to figure out this new both-retired-life of ours--our latest challenge. I'm struggling with emotions but don't know how much of it is just being tired and sick so I'll wait to deal with them at another time.
Tom just got up to tell me that he felt really good! Those were really good words to read! Hoping for more of that.
Psalm 46 was sent to us by a friend this morning. I don't want to forget these words: The very first verse says, "God is our refuge and strength, a very present help in trouble." Very is a Hebrew word meaning: exceedingly, might, force, abundance; with muchness, muchness. Present is a Hebrew word meaning to appear, to be recognized, to be present, to prove to be, to be found sufficient, to be enough. so God is a mighty force. . .with much muchness, He is sufficient in our troubles!! He has proven to be enough. We are living epistles that God sends to share with others of the goodness of the Lord, to share the truth of why we know God to BE an Ever Present help in trouble. God is right in the midst of our lives, and all we face with that, we should not be moved from believing HE is ENOUGH. We will see His light dawn through the darkness, His help at break of day! Psalm 46:5: "God is in the midst of her, she will not be moved: god will help her when morning dawns."
So no matter what we are going through; no matter what we are facing; no matter what we are feeling. . .be still and know He is God. He, God the Father, jesus the Son of God and God the Holy Spirit is enough. God wants us to really believe this to the very depths of our being. How differently we might act if we truly believed this.
Psalm 46:10-11 "Cease striving and know that I am God; I will be exalted among the nations, I will be exalted in the earth." The LORD of hosts is with us; the God of Jacob is our stronghold."
Our friend finished with the words to a song of praise:
"Hide me now under your wings, Cover me within your mighty hand
When the oceans rise and thunders roar I will soar with you above the storm
Father, you are King over the flood. I will be still and know you are God
Find rest my soul in Christ alone
Know his power in quietness and trust"
Saturday, January 2, 2010
Seeing progress
We're finally seeing healing progress--YEAH! The stoma (hole in the neck) is healing well. There is still one particular sore in the trach but the rest looks good. There is still redness around the stoma but it seems to be a little less red. We've had a few uneventful days which we are thankful for. AND no ER visits!
Tom is feeling sensitive about having the tube out of his neck. While that is the goal I think that will take some time. He's concerned that he will gross people out but I've gotten used to it and believe that others will, too. He's very hopeful that he will feel up to going to church tomorrow. It will be good for him to be back. It's been a whole month.
I am hoping to get into a better sleep pattern. My body just doesn't want to sleep when I have the opportunity.
Tom is feeling sensitive about having the tube out of his neck. While that is the goal I think that will take some time. He's concerned that he will gross people out but I've gotten used to it and believe that others will, too. He's very hopeful that he will feel up to going to church tomorrow. It will be good for him to be back. It's been a whole month.
I am hoping to get into a better sleep pattern. My body just doesn't want to sleep when I have the opportunity.
Thursday, December 24, 2009
Christmas eve
Where did I leave off--oh, yes, we were having a quiet day. . .until about 4:00 when Tom was having difficulty breathing. Talked to Merati's nurse who said to put the tube back in. Easier said than done but we had the choice of me doing it OR taking him to ER. Dr. Merati wanted to see us the next morning. I knew that I would be more gentle so as hard as it was we got it back in. Tom felt immediate relief and we had a fairly good night.
Today is Christmas eve. We began it at the UW Med Center. It was decided to try an even shorter tube, use it during the night and try to keep it out as much as possible during the day. They also put him back on antibiotics for 5 days. We're still hopeful that the lesions in the trach will heal soon.
About 1:00 we headed over to Kylisa and Chris' house for our Christmas eve celebration. We enjoy nothing more than being with our children and grandchildren. It's strange to not be a part of the cooking this year but I had no energy for it and the kids are so capable. Very satisfying to watch the next generation take over and enjoy doing it. Love seeing them all get along so well and enjoy each other.
He, too, enjoyed the afternoon. Though when it got too loud he took some time out and slept. We came home about 7:00. He is fed, had his meds and is settled in for the night. I am close behind him but first will enjoy a cup of sleepy tea courtesy of daughter April. Tom was not up to going to our Christmas eve service tonight--it would have been a very long day for him. We both miss not being there. I am watching a wonderful Christmas concert on tv. Just goes to show that there are many ways to celebrate the birth of our Savior Jesus Christ. I love Christmas music--such a story to tell, such a wonderful God we serve who cared enough to send His Son so we could know Him better and be invited into such an intimate relationship for all eternity. What peace.
Peace--I laughed today when Tom wrote that he wanted "peace meds." I had to stop and think what he was talking about. Oh, yeah--I had been calling the lorazapan "calming drugs". I like Tom's name better! The other thing he enjoys writing is, "this surgical procedure was not a pain in the ass but a pain in the neck!" Yes, it does sound just like Tom! And I don't even want to censor him! I'm loving "hearing" every word he "speaks".
A friend shared something she learned in her grief support group. Someone there said, "don't worry about what's coming. Just do the next thing." I've been thinking alot about that--it's becoming a way of life--just doing the next thing--can't think much beyond it. Just good to hear someone say that that's enough.
Today is Christmas eve. We began it at the UW Med Center. It was decided to try an even shorter tube, use it during the night and try to keep it out as much as possible during the day. They also put him back on antibiotics for 5 days. We're still hopeful that the lesions in the trach will heal soon.
About 1:00 we headed over to Kylisa and Chris' house for our Christmas eve celebration. We enjoy nothing more than being with our children and grandchildren. It's strange to not be a part of the cooking this year but I had no energy for it and the kids are so capable. Very satisfying to watch the next generation take over and enjoy doing it. Love seeing them all get along so well and enjoy each other.
He, too, enjoyed the afternoon. Though when it got too loud he took some time out and slept. We came home about 7:00. He is fed, had his meds and is settled in for the night. I am close behind him but first will enjoy a cup of sleepy tea courtesy of daughter April. Tom was not up to going to our Christmas eve service tonight--it would have been a very long day for him. We both miss not being there. I am watching a wonderful Christmas concert on tv. Just goes to show that there are many ways to celebrate the birth of our Savior Jesus Christ. I love Christmas music--such a story to tell, such a wonderful God we serve who cared enough to send His Son so we could know Him better and be invited into such an intimate relationship for all eternity. What peace.
Peace--I laughed today when Tom wrote that he wanted "peace meds." I had to stop and think what he was talking about. Oh, yeah--I had been calling the lorazapan "calming drugs". I like Tom's name better! The other thing he enjoys writing is, "this surgical procedure was not a pain in the ass but a pain in the neck!" Yes, it does sound just like Tom! And I don't even want to censor him! I'm loving "hearing" every word he "speaks".
A friend shared something she learned in her grief support group. Someone there said, "don't worry about what's coming. Just do the next thing." I've been thinking alot about that--it's becoming a way of life--just doing the next thing--can't think much beyond it. Just good to hear someone say that that's enough.
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