Ex.Haus.Ted

I have been exhausted the past while. I don't even know how long it goes back. It seems like all of last month was a blur. Maybe the exhaustion goes back to when Layne started hospice at the beginning of August. The exhaustion might have come from taking care of someone terminally ill while still trying to do my usual tasks and gradually taking on all of the tasks that go along with taking care of a family and running a home. I'm not sure when it started - but, it's still going strong. The last few days my eyelids have felt heavy and I've fought to keep them open. There are times I've lost the battle and sleep just has to happen - no matter what time of day. I've noticed my brain isn't working quiet as well either. It's not like I had a corner on being brilliant in the first place.:} So...if you see someone in a lethargic stupor...it's just me.

One Week

It's odd to think it's been a week since Layne's passing. In some ways it feels so much longer...in some ways it seems like he was just here. There's been so much to do. I feel like we're able to slow down a bit now that the viewing/s and funeral are over. There are still a few things to do. I will be getting some things down each day - just not at the same pace.
I think I mostly need to take time to realize he's gone. I looked at a picture this morning where he was smiling and looking at the camera with his bright blue eyes. I knew that was exactly the way I wanted to remember him. I'll need to take some time and conscious effort so the image of him being so thin, sick, and in pain will be overshadowed by the man that was vibrant and healthy.
I feel like there have already been a couple of 'interventions' by him already. I'm feeling like he will be in the details. Because...let's face it...that's just who he is. I like the idea that he's still doing what he can to take care of us - he's just been 'relocated'.

Obituary

We have Layne's obituary ready for perusal. We'd love to see anyone there that would like to come. We are so grateful for all the support.

Partner In Crime

So after a few moments of feeling lighter and like I could conquer the world - not really - I was feeling that light, confident, and productive. But, I was also still in reality. I thought I was going to be prepared for the day. I wasn't. By the end of the day I was exhausted, frustrated, and feeling defeated. There are things to do, people to work with, and disappointments that come. Reality hits even harder when things get tough and there is no one to lean on at the end of the day.
Taking a moment...
I had to pause for a moment to cry and attempt to recognize if that's what I really meant. There were things that happened yesterday that were hard. I felt the demands and pressure of things needing to get done. There were things that didn't go as smoothly as I hoped or thought they would. I was thinking that the issues of the day were with current details and concerns. I didn't think about the possibility of underlying reasons. Duh. Maybe part of my struggle yesterday was feeling like I was making decisions on my own - even though there were people here to help. (Thankfully!) I have no 'partner in crime' anymore.

There's More

I also realized that in addition to what I mentioned in the previous post, I was feeling uplifted because the kids and I were able to just spend some time being 'us'...we talked, we might have been a little silly, we danced...I miss them. It was good to feel connected for a few minutes. That was part of the happy and light yesterday morning. At the time, the idea of no longer being a caregiver is what I noticed and latched onto - it's what I recognized as a source of relief. It might have been the relief of being able to move on with life. I felt like it was going to be okay. As if I really might be able to manage making decisions and being productive without my companion being right by my side.

Feeling Lighter

Yesterday morning I realized I felt lighter. I felt I could think clearly and I was ready to be productive. I wondered why. That doesn't seem to be something a new widow (That's the first time I've typed that word in reference to myself...odd.) should feel - I don't really believe in 'shoulds' - maybe I just recognized that it might not be typical. I realized a couple of things. One is that a full night's sleep can make a big difference. It had been awhile. When someone needs extra care, it's usually 24/7 - not just when the caregiver happens to be up for the day anyway. So - sleep was one reason. Another reason was worry or maybe anxiety...whatever the proper term is when you're constantly concerned about someone. Yesterday morning was the first time I truly realized how much I had been concerned about Layne, how he was doing, the pain he was feeling, and what I could do to help. There was all of that concern and then I added on the concern about everything that needed to currently be done in addition to taking care of him and how I was ever going to manage everything without Layne in the future. The logistics overwhelmed me. I now have a different set of logistics. They still overwhelm me. But, life continues to move forward. I'll see if I can do better today.

Funeral Details

Viewing: September 27th, Sunday Evening (6-8 pm), Larkin Mortuary - Downtown; 260 East South Temple (SLC)

 

Viewing and Funeral: September 28th, Monday Morning, 9:30 and 11am; LDS Church, 760 North 1200 West (SLC), West Side of Building

(viewing 9:30-10:30; funeral at 11:00)

Please share with any and all who might want to know. One of the topics of conversation with Layne and I in the weeks before his passing were all of the people we have done a terrible job of keeping in contact with over the years. So please feel free to share.

Returning Home (Read previous post first)

After getting the boys to their destination, I headed over to the temple. I was so glad to be there. The anxiety left and I was able to feel some peace while I was there. The feeling didn't last as long as I thought it might. I checked the time when I got out. I was looking to see how much time I had to eat the rest of my apple slices before going to pick up the boys. To my dismay - I was already late. How does that happen? It's so not cool to be late for drop off and pick up. Ugh! I hurried to the van, drove over in anxious mode, and then brought the boys home. As soon as I got home Layne's mom conveyed that Layne had not taken the meds she had tried to give him. She said he didn't seem like he was doing very well and he was asking for me. I went down to see him. I didn't get very far before returning back up the stairs for a different kind of medicine that would help with his breathing. It was obvious immediate help was needed. He was somewhat resistant to taking the medication. I didn't know if it was because he just didn't want it, if he was panicked, or if he just didn't understand what was going on. I tried to calmly let him know that what I was giving him would help his breathing and help him to be more calm. I praised him for any effort. He eventually let me give it to him. I think it was the first time that I put the syringe in his mouth and pushed the liquid in underneath his tongue. Well, that's what we were going for...it didn't really make it under his tongue. While I was giving him the medicine he was trying to tell me something else. I couldn't understand what it was...it was sort of a 'haw' sound. Although, I could tell that the word didn't start with 'ha'. It was more like an 'ho' word. I was asking him if he was hot. Did he want a cool cloth? He seemed to not understand why I wasn't understanding. He was also doing something with his hands. I wasn't sure what that was either. I couldn't tell if he was trying to take the medicine and administer it to himself, or if he was trying to take it away...or maybe he was pointing at something...I didn't know. As I was trying to make sense of it all - I finished giving him the meds and saw a relatively quick improvement in his breathing. This brought some relief for me and for his parents as well. The scary part was over and we'd just have to wait for him to stabilize. I went to do something quickly. I think I just took the syringes back upstairs. I don't think I even cleaned them at the time. I also made sure the girls were on their way to their activity. I came back down and was the only one in the room with him. His mother was coming down. I told him I loved him, stroked his arm, and gave him another kiss on his cheek. His eyes seemed to acknowledge my gesture. I turned to look at his chest to check his breathing. It was still. I touched it while looking for any signs of a pulse. Nothing. Odd how eyes can register one thing and in the time it takes to glance somewhere else...nothing registers. His eyes weren't saying anything anymore. I panicked. It's like I knew he was gone but didn't want to believe it. By this time, his mom was in the room. I know because I almost bumped into her as I headed for the stairs to yell for one of the boys to call the emergency number for the hospice group. "Tell them he's not breathing!" I went back to be by him and felt the tears start to come. I knew it was over. The pain was gone. Thinking back on all of it - I really think that when I was trying to give him the medicine, he was pointing to the side of the room and venturing to say the word, "Home.". He wanted to go home. He wanted to be done. He knew it was time. So...while he was waiting for me to return home he was also waiting for the chance to return home as well. I will forever be grateful that he waited just long enough for me to be there when he left and tell him I loved him.

Out The Door

Yesterday afternoon I had scheduled to take the boys down to their debate league meet up. It's far enough away that I just stay down there while they do their thing. I have been going to the Draper LDS Temple in an attempt to be renewed and use my time wisely. That was my plan for yesterday as well.
Layne was at the point where he didn't really even know what day it was. He had a rough morning. It was the time of day when I needed to be getting ready to go. I told Layne I was going to be heading out soon. He asked me about where I was going, what I was doing, and when I would be back. I answered his questions and tried to explain what was going on. He told me he didn't want me to go. I struggled with that. I was already worried about leaving him and knowing he didn't want me to leave made me more anxious. I was also concerned about the time. It was important to me (and the boys) to get them where they needed to be on time. We no longer had much wiggle room. I needed to either ask Layne's folks to drive the boys so I could stay - or, I needed to get ready and be gone in the next couple of minutes. (I already had one of the boys slicing an apple for me so I could eat something on the way. Have I mentioned lately that we have some pretty cool kids?) I also knew that if I left, I still needed to tell his folks about the meds he needed while I was gone. They also needed to know what to look for and what to do about it. These are not exactly details that can be skimmed through carelessly. So, I dropped to my knees by the side of Layne's hospital bed. I started saying a silent prayer. I didn't get very far when Layne whispered, "Go do what you need to.". He was at the point of not being able to articulate individual sounds very well. His voice's volume was on low. I asked him again - he made his statement again while I focused on listening. I knew that was my answer. He was okay with it. While I was saying good-bye - and that I'd be back in a little while (knowing the time wouldn't mean much to him) - he whispered again, this time he told me, "Have fun.". I was comforted knowing he really was alright with my leaving for awhile so I kissed his forehead and hurried to finish getting ready and give a one (or two) minute primer on meds to his mother. Needless to say...the boys were late.

'No Quitting' Zone

Layne was in quite a bit of pain towards the end. It's a relief to know he's no longer in pain. I know he's much happier. I told him many times that he had the easier part. He just had to be sick and then die. I had the hard part - I had to watch him be sick, die, and then move forward supporting (and raising) a family of five on my own. We...okay...I would joke about that because there were times I was a little jealous that he got to leave and I had to be the one to move forward. I don't envy the pain. I could not have handled it as well. I would not have held on as long. I would have checked out much sooner. Layne did an amazing job of still making an attempt to live a full life as much as he possibly could - he was not a quitter. I will follow his lead.

What's Next?

Layne headed 'home' yesterday afternoon. I'm not sure what to write first. I could start with the few moments surrounding his passing. I could begin with events that have happened since that time. I could go back as far as yesterday morning - or perhaps somewhere within the past week.
Maybe the perfect place to kick things off would be to share how the kids and I are managing.  Others  might want to know what's happening next for our family. Some could be wondering if we need anything - or I could give an account of all those who have done so much for us already. We are grateful. Perhaps a starting point would be to say all of the great things I will miss about Layne - or some of the things I will not miss about being a caregiver. Another possibility would be funeral plans...what will be happening when and where. So many thoughts...so much to write.

Being Present

This week-end. I remember being in Houston last year. It seems odd that a year ago we were just starting to travel to Texas for Layne's treatments. I was thinking about how I missed going to the Women's Session of General Conference with my girls. They had a grandmother here for them. But, I missed going with them and sharing that experience. There are other things I'm remembering missing out on as well with the kids. I'm glad we're in town this year. The traveling got old pretty quickly. I like being with the kids. I want to be present for them. I know they need the support. There are times I still miss out on the fun things my kids get to do because others have been kind enough to take them places and do things with them while I'm here with Layne. I'm glad they're getting to experience things. I just miss experiencing those things with them. I also feel like there are times when I need and want to do more with them and Layne has a more immediate need - or there are other items that need to be taken care of immediately. I need to figure out a way to be more present with the kids.

Birthday Wishes

Tomorrow is Layne's birthday. If you'd like to send a birthday wish - you can just leave a comment. You are also welcome to contact him/us in whichever way you typically would for the occasion as well. Thanks.

Thy Will

I went down to see Layne this morning. He was watching a General Conference talk from April 2015. It was the one by Elder Jorge F. Zeballos of the Seventy, entitled 'If You Will Be Responsible'. I came just in time to hear the fourth point he makes...Willingly Accepting the Father’s Will. The story he uses to illustrate his point is about a young boy whose family has waited to have join their family, goes unconscious, and dies at the age of three. The father of the boy has an attitude of 'thy will be done' as events unfold for their family. I thought of our family and Layne's journey. I find myself in a similar position to the parents in the story - a dearly loved family member, a Heavenly Father that is calling his son home, a choice to make, a commitment to keep...willingly submitting to His plan regardless of our original plan as a couple. It's all about keeping the faith.

Letting Go

I talked with Layne last night about letting go. He needs to feel that it's okay to die. We've had several conversations on the topic. He doesn't want to just give up. He seems to think that if he lets himself die he's not fighting to the end. He has connected that with having faith. In order to show faith - he needs to keep going. I don't agree completely. Faith is important. Yes. I agree with that part. I don't think the only way for him to show faith is to stick around indefinitely. I don't want him to die. What I do want is for him to feel good about the path he has traveled, accept his reality, and feel at peace with completing his mortal experience. 

I know none of this has anything to do with what I want...but, that is what I want for him. Well, I want that mostly for him. I want it partly for me. I don't like watching him feel frustrated with all of the things he's not able to do. I don't want to witness someone I love being in pain anymore. I don't like watching him feel 'stuck' because his body and mind aren't cooperating. What I really want is what's best for him.

Randomness In Our Lives

9/8/15 - Jotted down random thoughts/info...

I'm realizing that I need to be confident in what I'm doing so Layne won't worry. I feel like I need to be strong for him. I don't want him to panic. If I'm not sure about what I'm doing, he won't go along with it. He's not thinking as well as he used to. He's never really liked the idea of me telling him what to do either. So, it's all in the way things are said.

last night - pain - nurse came - up again at 4
10:40, 11:40, 12:40

I returned text to his hospice nurse.

He's groggy this morning. I helped him fill the daily pill container. We talked a little about his intake. And about finances. As I watched him fade in and out - I thought about how we should have recorded more of his memories and messages. By the time we had the technology, he hasn't been up for being recorded very much. There have been a couple of things he said that I'll need to write down.

His testimony. I know God has a plan for us. I know the atonement is real. Keep the commandments and follow the prophet (more to the kids). Sometimes things are hard, but I know the gospel is true and that God has a plan for each of us. He knows us.

I've started keeping a log of meds. There are several to keep track of at this point.

Tricky to be the one to field calls, messages, and visitors along with other things we're doing.

Still Here

So much to write...
I haven't been able to post anything the last couple of days. The days are so full around here that I don't always make the time to write. I'd like to - just doesn't always happen. I have a couple of posts started about different topics - just nothing finished.
I have felt the last couple of days that I should write so people will know that Layne's still alive and fighting. It's as if people are waiting to hear the final news. So, I feel responsible for making sure that communication is there.
I also have people messaging me about what is going on. There are questions about how Layne is doing. There are messages of love and hope. There are queries about how to help. There are people visiting - to offer help, to respond to a request, to show a way they found to help, to see Layne just once more, to say good-bye, to thoughtfully drop something off, to hang on to hope.
I don't think I have ever fielded so many calls, messages, visits, appointments, posts, comments, cards, donations to our cause...in my life. That's all in addition to taking care of Layne, the kids, finances, income, and my health...and everything else. (For example, I don't think I've looked at our garden for days. It's harvesting time, right?:})
I also don't think I have ever had so many urgent categories to deal with in my life - some might not be as urgent as others - but, somehow there are times when everything feels urgent - especially for my executive functioning challenged brain. Priorities, productivity, and me...that's probably a post for another time. (I attempted to do a whole blog about it once. It didn't work. Hmm. Wonder why.)

Caregiver Fails

I went to bed last night thinking I'd actually get some sleep. Layne woke me up at 2am and 3:30am. I was a little cranky about it. Then I realized that both times could have been avoided if I'd just done my job last night. The first time he came in he wanted to know when I'd given him the last set of meds. I hadn't written it down. The second time, he came and asked about his patch (morphine). It was scheduled for a change last night and I went to bed without doing it. Completely forgot.
Must do better. Luckily for both of us, this is not the norm.

Numbers

I've looked at the numbers for this blog. It seems odd that people are actually reading it. Well, not odd that people are reading it - just more people than I thought. Although, it's not like any awards will be handed out anytime soon. There aren't that many people reading it. Thanks for the cyber support and love. Or, maybe it's just the 'curious about what's going to happen next' factor. I don't know. Thanks for stopping by - there are always other things to do with your time. (Oh. Maybe I shouldn't remind you.):}
I have another blog that's more about the everyday stuff around here. Let me know if there's an interest in my sharing that one as well. It's kind of like this one - not many (if any) bells and whistles. I try to carve out time to write. But, it takes more than that to really make an interesting blog. I just haven't done it yet. One of these days...

LDS Cancer Caregivers...Again

I started the LDS Cancer Caregivers page awhile ago on Facebook. I'd love to have people who are interested in being part of the group come join me. I'm not sure I want to directly invite others individually. I don't want people to feel pressured or obligated to join. Cancer seems to be a growing trend. Logically, the numbers of caregivers would seem to be increasing as well. If you know anyone who might be interested, will you pass along the information?

Sleeping Arrangements

I just wrote about having Layne be downstairs and me heading upstairs to sleep. He's some clarification. Hospice delivered a hospital bed awhile ago. It fits downstairs where he's been sleeping for awhile. The room also has his favorite recliner and a futon. He had an air mattress set up before the hospital bed was brought in. So, with all of those options he sleeps downstairs now. His folks also brought a foam mat to put on top of the bed so it's more comfortable for him. His body has no padding these days - that means we get to add padding as we can. He also has a wedge that is leaned up against the shelves that run the length of bed. He uses that as another option in an attempt to sit up during the day. That lets him face the room if he feels the situation calls for it. If not, he'll move the upper portion of the bed in order to sit up or sit in the recliner. They both face the TV.:}

It's been awhile since he's slept upstairs in our bed. He just can't lay flat anymore. It's too painful. He would try to use the big wedge we have (that's now downstairs) as an effort to find a position that worked. He didn't find much success. There has been more success with a hospital bed and meds for pain management.

Not Yet

I slept on the futon for awhile last night. I wasn't ready to say good night and head upstairs yet. There are times I just don't want to leave. I feel like we're supposed to be doing something more while Layne's still around. It feels like we should be doing more to make memories...or say and ask things that we haven't yet. It feels like we're supposed to make an effort to make sure we don't have regrets when he's gone. Maybe I'm just not ready to have him gone yet. Maybe I'm not sure how to cope and make things work without him. Maybe I'm not ready for all the unknowns. Maybe I'm not ready to go it alone. Maybe I have a hard time saying good night because I'm not sure I'll have a chance to say good morning a few hours later. I also have a hard time not knowing if he'll need help during the night.

Working Together

We're attempting to be organized around here. Sort of. We went through a few papers and files today. There are quite a few documents that have to do with Layne's medical happenings. They tell a story in and of themselves. There are details we haven't even gotten to yet that need to be addressed with finances and end of life planning. We're trying to pull ourselves together as much as we can.
Layne gets a little panicked about what he can and can't do these days. He's so used to being independent. He thinks he needs to singlehandedly make sure that the kids and I are taken care of when he's gone. I appreciate the valiant effort - I just don't like seeing him get worked up over it. He's always considered his roles as father, husband, provider, and protector very important. He's worried enough for the both of us about certain things that I just let him take care of it. I have kept myself busy with other things. I determined long ago that it's not worth both of us being anxious about some things. So, I've let him take care of that category since he was doing it anyway.

Today...

I went to the chiropractor this afternoon. While I was there, he was kind enough to let me experience the new message therapy they have at their office. What's better than both of those things? I get to add a take out dinner that is delivered to our door because a thoughtful relative sent it our way...and, cookies baked and brought to our doorstep by some of the Young Women in our ward.
We also just finished recording Layne sharing some of his thoughts, memories, and testimony. It was a bit tender in parts. I miss spending time with just him. I'm glad we did it.

He's Ready

Last time we saw Dr. Garrido, he told us, "a couple weeks - maybe a month.". Today marks four weeks since that was spoken. It's been even more of a 'wait and see' experience than it has been in the past. We don't really know what will be happening when. I do know that Layne is continuing to decline. He is more exhausted and is in more pain. He spends most of his time trying to find a place to be that is not uncomfortable. There are times I wish he would come back. There are times when I know I need to let him go. He's ready.