The last several days were marked by consistent decline. The delirium had returned. Trent's overall condition was very much like the day I brought him to the hospital at the end of October. (End in Sight) There were also new issues that we did not deal with back then.
I let our pastor know. I called family. I sat with him - watching and listening. I watched for signs of discomfort because he wasn't able to articulate what he was feeling. I listened to his breathing. I listened to his words, most of which stemmed from the delirium. I tried to calm his frustrations that were coming from the strange messages his brain was sending him.
Yesterday was definitely a more difficult day. I knew we were incredibly close to the end. I did my best to keep him comfortable. The kids came for a brief visit.
I sat by his side during the night. I dozed off here and there. About 6:20 this morning, I was suddenly awake. I knew. Trent's suffering is finished. He rests in the arms of his Savior.
I called my pastor, and we made plans for meeting with the kids. There simply is no easy way to have that conversation, but it went as well as could be expected. I am grateful far beyond words for the incredible support of our pastor and his wife.
So far today, it has been all about the details. There are still many details to which I need to attend.
God has shown His incredible goodness and grace through all of this, including the timing and surrounding circumstances. He is good!
Thank you so much for all of your prayers.
Saturday, December 14, 2013
Friday, December 6, 2013
One Day at a Time
This past week was a little more difficult. Thanksgiving Day certainly was different than any other holiday observance. There were a few visitors and phone calls, but mostly, the day was quiet - quieter than usual since several of the residents were gone to be with their families.
The fact that it was a holiday week gave place to thinking about all of the changes that have occurred this year -- and those yet to come.
Of course, Thanksgiving marks the beginning of the 'Holiday Season'. That, in itself, is hard to process. I can't make plans. At this stage of life, there isn't even a small degree of what can be 'reasonably expected'. The best I can do is to formulate a few vague 'If / Then' scenarios.
Last week, Trent's wedding ring would no longer stay on his finger. I asked him if he wanted me to wrap it with tape so it would stay on. He handed it back to me and told me he didn't need it. I had tried to mentally prepare myself for the fact that I would need to remove his ring at some point, but I was totally unprepared for him to hand it back to me. It was hard.
Yesterday, there was a marked increase in Trent's level of fatigue and weakness.
I think one of the hardest things I deal with is not knowing exactly where we are in this journey. It requires me to continually surrender myself to the timeline that God has for us.
I've said it before, but it bears repeating: The greatest comfort through all of the uncertainties that we have been through has been knowing, without a doubt, that God is in control and that He has a plan for our lives and that He loves us and will work His plan in His time. Daily we see God's goodness to us. He continues to provide for our needs and shows us His love through those who He has placed in our lives.
We appreciate your prayers for us as we continue our journey.
The fact that it was a holiday week gave place to thinking about all of the changes that have occurred this year -- and those yet to come.
Of course, Thanksgiving marks the beginning of the 'Holiday Season'. That, in itself, is hard to process. I can't make plans. At this stage of life, there isn't even a small degree of what can be 'reasonably expected'. The best I can do is to formulate a few vague 'If / Then' scenarios.
Last week, Trent's wedding ring would no longer stay on his finger. I asked him if he wanted me to wrap it with tape so it would stay on. He handed it back to me and told me he didn't need it. I had tried to mentally prepare myself for the fact that I would need to remove his ring at some point, but I was totally unprepared for him to hand it back to me. It was hard.
Yesterday, there was a marked increase in Trent's level of fatigue and weakness.
I think one of the hardest things I deal with is not knowing exactly where we are in this journey. It requires me to continually surrender myself to the timeline that God has for us.
I've said it before, but it bears repeating: The greatest comfort through all of the uncertainties that we have been through has been knowing, without a doubt, that God is in control and that He has a plan for our lives and that He loves us and will work His plan in His time. Daily we see God's goodness to us. He continues to provide for our needs and shows us His love through those who He has placed in our lives.
We appreciate your prayers for us as we continue our journey.
Sunday, November 24, 2013
Thanksgiving
People are focusing on things for which to be thankful this time of year. While I don't disagree that it is a good thing to set aside time to focus on the blessings and to be thankful, I do think we would all benefit from keeping that more of a continual practice than simply an annual event.
For me, the past several months have been just that -- a time to focus on and be thankful for the blessings. I believe the Lord started that work in my heart before Trent's surgery. When I wrote my original post about this journey that we've been on, I told how I had thanked God for His Love, Care, and Total Control the night before the surgery and how I felt impressed to do the same the night following surgery. (New Path)
All along this journey, God has shown me His Goodness. Focusing on the blessings allows me to have that Peace that passes our human understanding, and then my spirit can rest in His Care. This has been a continual exercise.
My dear friend Valerie visited with me today, and we talked about this. I had mentioned that I have to continually surrender to God's plan and His timing in all of this. She asked me what process I go through in doing that. I'm not very good at putting things into words, but the best way I can explain it is to say that I have to turn my issues (worries and stresses and concerns) into thankfulness.
~When I am feeling crushed by the weight of something I have to deal with, then I thank God for His Strength and Grace for each situation.
~When I become overwhelmed thinking about the future (near or far), I have to stop and thank God for today - for that moment. I also thank Him for having a plan for our lives - individually as well as collectively.
~When I struggle with the fact that I can't meet everyone's needs all of the time and I feel so inadequate and when my youngest tells me he wishes I were more than one person so I could be two places at once, I have to thank God. I thank Him that He IS enough and that He IS everywhere all at the same time. I thank Him for the people that He has placed in our lives to walk along side us and meet some of those needs.
~There are too many aspects to mention here, but so many of the burdens I have are lifted when I thank God for His Total Control over all of the details in our lives, and I ask Him to help me to rest in His Care.
I could never name them all, but here are a few of the things for which I am incredibly thankful:
For me, the past several months have been just that -- a time to focus on and be thankful for the blessings. I believe the Lord started that work in my heart before Trent's surgery. When I wrote my original post about this journey that we've been on, I told how I had thanked God for His Love, Care, and Total Control the night before the surgery and how I felt impressed to do the same the night following surgery. (New Path)
All along this journey, God has shown me His Goodness. Focusing on the blessings allows me to have that Peace that passes our human understanding, and then my spirit can rest in His Care. This has been a continual exercise.
My dear friend Valerie visited with me today, and we talked about this. I had mentioned that I have to continually surrender to God's plan and His timing in all of this. She asked me what process I go through in doing that. I'm not very good at putting things into words, but the best way I can explain it is to say that I have to turn my issues (worries and stresses and concerns) into thankfulness.
~When I am feeling crushed by the weight of something I have to deal with, then I thank God for His Strength and Grace for each situation.
~When I become overwhelmed thinking about the future (near or far), I have to stop and thank God for today - for that moment. I also thank Him for having a plan for our lives - individually as well as collectively.
~When I struggle with the fact that I can't meet everyone's needs all of the time and I feel so inadequate and when my youngest tells me he wishes I were more than one person so I could be two places at once, I have to thank God. I thank Him that He IS enough and that He IS everywhere all at the same time. I thank Him for the people that He has placed in our lives to walk along side us and meet some of those needs.
~There are too many aspects to mention here, but so many of the burdens I have are lifted when I thank God for His Total Control over all of the details in our lives, and I ask Him to help me to rest in His Care.
I could never name them all, but here are a few of the things for which I am incredibly thankful:
- God, who Loves us, Cares for us, and Controls all of those things which we cannot control -- and Who never changes
- People who have cared for our children, provided them with a diversion from the weightiness of life right now, or given them stability and a sense of normalcy when life is anything but normal
- People who have brought food for our family and who have helped with yard work
- Friends and family, both near and far away who love us and who pray for us
- People we've never met who are praying for us
- Doctors, nurses, and staff who genuinely care
- Needs that have been met
- Good counsel
- Encouragement
- Peace
- Grace
Thursday, November 14, 2013
A Time Like No Other
Little by little, I am seeing the confusion return.
Trent sleeps more and more and, at times, is harder to wake from sleep to give him his meds.
Some days, the increasing weakness is very noticeable.
Some of the staff are concerned at what they see, but then they don't know what to think when I tell them that we've been through worse before . . . .
These are the things that are hard to watch. I never know if I am seeing a temporary low or if this is a true decline.
I have no choice but to trust that God has a plan and that He will work it in His time.
As uncertain as each day may feel, it is comforting to know that God holds each moment in His control.
Each day truly is a gift.
There were changes for the kids this week. My sister needed to go home to her own family. I chose to split the kids and put them in homes where I felt they would have the best fit. They weren't sure about my choices when I told them initially, but they are doing well. I miss them. Seeing them for a few minutes each day is not the same as being home with them. I know this is not forever, but it is still hard.
As hard as this phase of life has been, it has also provided opportunities for reflection that I would have been otherwise too busy to take. I don't know if words will ever be able to adequately describe all that life is and has been over the past few months. As I sit here next to Trent, I can focus on the blessings that we often take for granted.
No matter the circumstances, it is beyond any doubt that we are blessed; and I am thankful.
Trent sleeps more and more and, at times, is harder to wake from sleep to give him his meds.
Some days, the increasing weakness is very noticeable.
Some of the staff are concerned at what they see, but then they don't know what to think when I tell them that we've been through worse before . . . .
These are the things that are hard to watch. I never know if I am seeing a temporary low or if this is a true decline.
I have no choice but to trust that God has a plan and that He will work it in His time.
As uncertain as each day may feel, it is comforting to know that God holds each moment in His control.
Each day truly is a gift.
There were changes for the kids this week. My sister needed to go home to her own family. I chose to split the kids and put them in homes where I felt they would have the best fit. They weren't sure about my choices when I told them initially, but they are doing well. I miss them. Seeing them for a few minutes each day is not the same as being home with them. I know this is not forever, but it is still hard.
As hard as this phase of life has been, it has also provided opportunities for reflection that I would have been otherwise too busy to take. I don't know if words will ever be able to adequately describe all that life is and has been over the past few months. As I sit here next to Trent, I can focus on the blessings that we often take for granted.
No matter the circumstances, it is beyond any doubt that we are blessed; and I am thankful.
Sunday, November 10, 2013
Shifting Steps
This has been quite a week, once again.
Our transition to the hospice was not easy. Almost immediately, we lost all pain and nausea control. The staff there really didn't seem concerned with what was best for Trent. They had their schedules and routines. I had absolutely no trust or confidence in the 'care' they were providing.
Their spiritual care director got involved and the social worker got involved. There were some changes made, but not enough to make me feel comfortable. When Trent voiced his desire to go elsewhere, that made the decision clear. On Tuesday, I had my sister come and sit with Trent for a couple of hours so I could go and see another facility. The difference in setting and philosophy could not have been greater. At the Lodge, they were amazed at some of the questions I asked and horrified that our experiences had made me feel it necessary to ask.
Jackie, the director at The Lodge, is all about getting things done, and - as promised - things were ready to move him within an hour. Trent was, of course, exhausted by the move; and Jackie's first priority was to get him into his bed and comfortable. After that was settled, then we focused on the paperwork. We are back under Methodist Home Hospice - just as we were before Trent was admitted; and that means we are back with the doctors and nurses that are already familiar with Trent. They sent a nurse out right away Tuesday night for a 'tuck-in check' to make sure that we had everything we needed for the night. The intake team came first thing Wednesday morning. Trent's doctor and his new nurse each came on Friday.
Trent has been so much more at ease here, and the pain is much better controlled. The nausea is much better, but not yet where we'd like it to be. Dr. Duane and I talked at length on Friday. We are going to watch closely for a couple more days and then re-evaluate. It feels so good to be working with people again who genuinely have Trent's comfort as their primary concern!
As far as the other facility, the social worker promises that changes will be made and that, as much as she hates what we have been through, our experience will enable them to force some changes that would have otherwise taken longer to make. I hope that is true.
We had a dear friend drive several hours to visit this week. It was a great blessing and encouragement.
There will be changes with the kids this week. My sister has been here staying with them, but she has her own family who miss her and need her. I know the kids will still be well cared for, but I see how all these things are affecting them. So many times, I wish I could be two places at once, but I can't.
Through all of the changes and difficulties, we still feel blessed. God has provided for all of our needs. He encourages us and strengthens us. He guides us and provides us with good counsel. He blesses us with good friends and family - both far and near. He gives us assurance that He is in control, that He has a plan, and that His way is best. He gives his grace for each moment that we face.
Our transition to the hospice was not easy. Almost immediately, we lost all pain and nausea control. The staff there really didn't seem concerned with what was best for Trent. They had their schedules and routines. I had absolutely no trust or confidence in the 'care' they were providing.
Their spiritual care director got involved and the social worker got involved. There were some changes made, but not enough to make me feel comfortable. When Trent voiced his desire to go elsewhere, that made the decision clear. On Tuesday, I had my sister come and sit with Trent for a couple of hours so I could go and see another facility. The difference in setting and philosophy could not have been greater. At the Lodge, they were amazed at some of the questions I asked and horrified that our experiences had made me feel it necessary to ask.
Jackie, the director at The Lodge, is all about getting things done, and - as promised - things were ready to move him within an hour. Trent was, of course, exhausted by the move; and Jackie's first priority was to get him into his bed and comfortable. After that was settled, then we focused on the paperwork. We are back under Methodist Home Hospice - just as we were before Trent was admitted; and that means we are back with the doctors and nurses that are already familiar with Trent. They sent a nurse out right away Tuesday night for a 'tuck-in check' to make sure that we had everything we needed for the night. The intake team came first thing Wednesday morning. Trent's doctor and his new nurse each came on Friday.
Trent has been so much more at ease here, and the pain is much better controlled. The nausea is much better, but not yet where we'd like it to be. Dr. Duane and I talked at length on Friday. We are going to watch closely for a couple more days and then re-evaluate. It feels so good to be working with people again who genuinely have Trent's comfort as their primary concern!
As far as the other facility, the social worker promises that changes will be made and that, as much as she hates what we have been through, our experience will enable them to force some changes that would have otherwise taken longer to make. I hope that is true.
We had a dear friend drive several hours to visit this week. It was a great blessing and encouragement.
There will be changes with the kids this week. My sister has been here staying with them, but she has her own family who miss her and need her. I know the kids will still be well cared for, but I see how all these things are affecting them. So many times, I wish I could be two places at once, but I can't.
Through all of the changes and difficulties, we still feel blessed. God has provided for all of our needs. He encourages us and strengthens us. He guides us and provides us with good counsel. He blesses us with good friends and family - both far and near. He gives us assurance that He is in control, that He has a plan, and that His way is best. He gives his grace for each moment that we face.
Thursday, October 31, 2013
Change of Venue
Today, I brought Trent to a hospice facility.
I struggled a little with this decision. I first had to reconcile to myself that I would have to make this decision without his input. I want to do what is best for Trent and what he wants. Those 2 things don't always mesh. I look at him and watch him grow weaker every day. I think about the logistics of our house - tiny doorways and walkways, tiny bathroom. I wonder how much weaker he will get before this is over. Even if I can handle his care now at home, will I be able to if he gets much weaker? Honestly, I just don't know. I see how hard even a little bit of noise and motion are on him, and I know it is not realistic to expect the kids to be silent and still all of the time they are home. There is also the factor that at home I am more than just total caregiver. I am also Mom, and there are dishes and laundry and phone calls and clutter and homework, etc. - all while keeping things quiet and still. When I am spread that thin, am I really doing anyone the good they need?
I know my kids need me. Trent needs me, too. I can meet my kids' needs and still have them feel secure using the help that has been offered to me. Trent has requested that I be with him - that is what makes him feel secure right now. His needs are for a brief season. I have put much prayer into my decisions and have gotten counsel. I know some people may disagree with my choices, but the fact is that I have to make the choices that I feel are best, and I am at peace with the decisions I have made.
The plans were set in place yesterday. The social worker ordered an ambulance transport, but when she said that, I saw a look on Trent's face that I really hate to see -- It was a look that tells me he feels things are being done to him rather than for him. He also thought that I was sending him away and not going with him. I stepped in and told her that I would bring him in our van. She really never agreed with me, but it is my choice; and I want to do what makes Trent feel the best as a whole - physically, mentally, and emotionally. Dr. Illig agreed with me, too.
I have had to talk with Trent several times about this decision -- he doesn't remember many conversations. I talked to Trent about the facility and told him I thought we should give it a try. I talked about the fact that it is a little bit more like home - definitely less clinical, but offers advantages we don't have at home -- an easy-to-maneuver set-up and less busy-ness. I did tell him that, if he really doesn't like it, we don't have to stay. I felt badly because he really never agreed to this - I think he just resigned himself to it.
Even though he has had much confusion lately, he was surprisingly lucid this morning. He could answer all of Dr. Illig's questions. He knew where we were going and why. He said to me, "So this is where I am going through the end of my life?" Oh, how I hated to answer that question! I answered that it did seem likely. Then he asked, "Is that why you've been so quiet about it?" I told him I had been quiet about it because, first of all I hated to see him upset about it; and the second reason is that I don't like to think about it because I will never be ready to say goodbye.
The emotional weight of the day has been great. The conversations were heavy. There was a great deal of finality in leaving the hospital. I really have no words to describe the emotions of bringing Trent here. Many times today I have cried out to God to strengthen me and to direct my focus and to rule my emotions.
I don't know that I've said it here, but I have told friends that this has been such a journey of trust and surrender. Trust that God has a plan, that He will give the grace and strength that I and the kids (and the rest of the family ) need, that He is in absolute control. Surrender of our plans, surrender to His will, and to His timing. When I purpose to trust and surrender, then I can have His peace. It is God's grace and peace that carry me through each day.
I struggled a little with this decision. I first had to reconcile to myself that I would have to make this decision without his input. I want to do what is best for Trent and what he wants. Those 2 things don't always mesh. I look at him and watch him grow weaker every day. I think about the logistics of our house - tiny doorways and walkways, tiny bathroom. I wonder how much weaker he will get before this is over. Even if I can handle his care now at home, will I be able to if he gets much weaker? Honestly, I just don't know. I see how hard even a little bit of noise and motion are on him, and I know it is not realistic to expect the kids to be silent and still all of the time they are home. There is also the factor that at home I am more than just total caregiver. I am also Mom, and there are dishes and laundry and phone calls and clutter and homework, etc. - all while keeping things quiet and still. When I am spread that thin, am I really doing anyone the good they need?
I know my kids need me. Trent needs me, too. I can meet my kids' needs and still have them feel secure using the help that has been offered to me. Trent has requested that I be with him - that is what makes him feel secure right now. His needs are for a brief season. I have put much prayer into my decisions and have gotten counsel. I know some people may disagree with my choices, but the fact is that I have to make the choices that I feel are best, and I am at peace with the decisions I have made.
The plans were set in place yesterday. The social worker ordered an ambulance transport, but when she said that, I saw a look on Trent's face that I really hate to see -- It was a look that tells me he feels things are being done to him rather than for him. He also thought that I was sending him away and not going with him. I stepped in and told her that I would bring him in our van. She really never agreed with me, but it is my choice; and I want to do what makes Trent feel the best as a whole - physically, mentally, and emotionally. Dr. Illig agreed with me, too.
I have had to talk with Trent several times about this decision -- he doesn't remember many conversations. I talked to Trent about the facility and told him I thought we should give it a try. I talked about the fact that it is a little bit more like home - definitely less clinical, but offers advantages we don't have at home -- an easy-to-maneuver set-up and less busy-ness. I did tell him that, if he really doesn't like it, we don't have to stay. I felt badly because he really never agreed to this - I think he just resigned himself to it.
Even though he has had much confusion lately, he was surprisingly lucid this morning. He could answer all of Dr. Illig's questions. He knew where we were going and why. He said to me, "So this is where I am going through the end of my life?" Oh, how I hated to answer that question! I answered that it did seem likely. Then he asked, "Is that why you've been so quiet about it?" I told him I had been quiet about it because, first of all I hated to see him upset about it; and the second reason is that I don't like to think about it because I will never be ready to say goodbye.
The emotional weight of the day has been great. The conversations were heavy. There was a great deal of finality in leaving the hospital. I really have no words to describe the emotions of bringing Trent here. Many times today I have cried out to God to strengthen me and to direct my focus and to rule my emotions.
I don't know that I've said it here, but I have told friends that this has been such a journey of trust and surrender. Trust that God has a plan, that He will give the grace and strength that I and the kids (and the rest of the family ) need, that He is in absolute control. Surrender of our plans, surrender to His will, and to His timing. When I purpose to trust and surrender, then I can have His peace. It is God's grace and peace that carry me through each day.
Tuesday, October 29, 2013
Slow Steps
Things have not changed a lot in the past few days. There is no schedule for this time of life - and they tell me that is even more the case with a younger person. It is just 'wait and see'. I'm certainly not rushing things.
Trent had quite a few visitors over the weekend. Some of them, he just slept through the visit, which is fine.
I was supposed to decide today about taking him home or moving him to a hospice facility. I really felt like it was not the right time to make that decision. I felt like I didn't have enough to go on to make it today. When Dr. Illig found out how I was feeling, she said to postpone a decision until Wednesday when she is back at work. I was thankful for that.
We did discuss, though, the fact that I would like a different Hospice nurse assigned to Trent if we do go home. There have been a couple of things that weren't the best with this last one; but the biggest factor was that Trent was no longer comfortable with her. I could work with and around her if I needed to do so, but Trent has to be comfortable with the person caring for him. It was time for a change.
Trent's confusion remains - I'm guessing it will stay that way. It varies in intensity and topic. I wonder if part of it comes from the struggle with and against the reality of what Trent is facing right now. I am doing my best to answer the questions he has as delicately and as positively as possible. It is not always easy. When my answers don't satisfy him, he becomes more frustrated and upset.
God's grace is sustaining us through these days. He strengthens us when we have no strength of our own. He gives us amazing peace in a time that can feel so tumultuous. I am thankful that I can trust Him with all of the aspects of life -- all of the things that are out of my control are completely in His control. I am thankful for God's goodness.
Trent had quite a few visitors over the weekend. Some of them, he just slept through the visit, which is fine.
I was supposed to decide today about taking him home or moving him to a hospice facility. I really felt like it was not the right time to make that decision. I felt like I didn't have enough to go on to make it today. When Dr. Illig found out how I was feeling, she said to postpone a decision until Wednesday when she is back at work. I was thankful for that.
We did discuss, though, the fact that I would like a different Hospice nurse assigned to Trent if we do go home. There have been a couple of things that weren't the best with this last one; but the biggest factor was that Trent was no longer comfortable with her. I could work with and around her if I needed to do so, but Trent has to be comfortable with the person caring for him. It was time for a change.
Trent's confusion remains - I'm guessing it will stay that way. It varies in intensity and topic. I wonder if part of it comes from the struggle with and against the reality of what Trent is facing right now. I am doing my best to answer the questions he has as delicately and as positively as possible. It is not always easy. When my answers don't satisfy him, he becomes more frustrated and upset.
God's grace is sustaining us through these days. He strengthens us when we have no strength of our own. He gives us amazing peace in a time that can feel so tumultuous. I am thankful that I can trust Him with all of the aspects of life -- all of the things that are out of my control are completely in His control. I am thankful for God's goodness.
Subscribe to:
Posts (Atom)