Oh how the changes and unexpected continues to surprise me. Tuesday night this week daddy went to sleep at 8:10 pm and literally up at 10:30 pm fully dressed, bed made, and watching TV. He never went back to sleep the entire night. Around 4:30 am I realized he was up and dressed, including his coat, I jumped up and quickly showered and got ready for work. I turned on the hallway light and he immediately opened his door and we started our morning routine with breakfast, meds, and eye drops. After his drops he started hallucinating, thinking someone was standing by him and then he thought someone else was there with a bat. He then went sound asleep. I took this chance to move the car over to the larger side of the garage, loaded all our stuff up, and doing my walk through before leaving to drop him off and head to work. I came back into the living room where he was still napping in his chair and I rubbed his arm and said, "Daddy". He didn't move. I couldn't even tell if he was breathing. It took me 3 times getting a bit louder each time to wake him up. I thought he died right there in the chair for a moment. It scared me to death, but he got up and we got in the car. Dawn, one of my sisters, called on the way to Pace and his conversation really didn't make a lot of sense. He had a hard time finding his words or completing sentences. So sad.
I suggested to Eric at Pace that he might want to find him a quiet spot so he could nap. He rested his eyes a little, but never really napped.
We got home around 4:15 yesterday and he got his snack and I kept him engaged in conversation until Tebo could get home and then we had dinner. I gave him a glass of wine with dinner and we cleaned up the kitchen and I was able to keep him up until 8:00 pm. He went to bed and wasn't real nasty like he has been lately, so that was nice. This morning, Thursday, I had to wake him up at 6:30 am. Cracks me up! There is no figuring out his schedule (or lack thereof).
You've got to find the funny wherever you can with this dreadful disease.
Thursday, February 27, 2020
Monday, February 24, 2020
Shattered heart
Unless you have lost a child you will have a very difficult time understanding or comprehending the depths in which a heart can shatter. What is even harder to understand, for me, is how I continue to breathe and how my heart continues to beat when it is so broken. The only way to explain it at this point is by the grace of God. If it were left up to me and my heart, it would have never had a heartbeat again after December 1, 2010 at approximately 5:30-6:00 PM when that doorbell rang.
For whatever reason the Lord has seen it fit to keep me on this earth longer than my precious son of whom I was his mother for 22 years. Yes, I'm still technically his mother, but I feel further from being a mom than I did when I was in my early 20's and told I would like never conceive a child. That's how I feel today.
Everyone handles or manages the loss of a child differently and I totally get that, but it is still hard for me to actually grasp the fact that I continue to wake up each morning and find a way to put one foot in front of the other and continue on each day.
I can assure you, I DO NOT WANT TO! I'm not suicidal nor would I consider taking my own life, I just do not grasp how it is possible for a heart to continue beating when it is so shattered like it is. Again, unless you have experienced that kind of loss there is no way you could possible begin to understand how this feels. The biggest part of my life as I knew it died and will never be repaired since Wednesday, December 1, 2010. It is a moment in time that I will never forget nor will it ever get easier or hurt less. It just won't.
I truly do my best every day not to live in that place, however, there are days when there is no changing how that feels and for the most part I can usually hide that from most and fake it with the best of them, but today was hard. I don't know why and typically I cannot explain what triggers it, but today was one of those days for me.
I felt like I was on the verge of tears all day and felt like I would fall apart at any given second. I had decided once I left the office to get daddy today that I would only check email to address anything urgent, but just as I was leaving the office someone had a request that required me to work. That just added to my day of frustration as all I really wanted to do is just sit and survive until Tebo got home with as little interaction as possible. Well, I guess best laid plans never seem to work out do they?
Life is hard. Life without my son, my only child, is literally the hardest thing I have done and ever will do. It sucks! It sucks big time!
I hate life without my son on this earth. I truly do hate it, but I don't have a choice. Suicide is NOT an option and being self absorbed is NOT an option. I have people depending on me. Retirement is NOT an option at this time so I will continue to just fake it until the day comes when I have the freedom to just have a freaking day when I don't have to fake being "OKAY" and just be sad for a moment. I guess until that day comes I will continue to figure out how to keep going when all I want to do is join my son in heaven.
For whatever reason the Lord has seen it fit to keep me on this earth longer than my precious son of whom I was his mother for 22 years. Yes, I'm still technically his mother, but I feel further from being a mom than I did when I was in my early 20's and told I would like never conceive a child. That's how I feel today.
Everyone handles or manages the loss of a child differently and I totally get that, but it is still hard for me to actually grasp the fact that I continue to wake up each morning and find a way to put one foot in front of the other and continue on each day.
I can assure you, I DO NOT WANT TO! I'm not suicidal nor would I consider taking my own life, I just do not grasp how it is possible for a heart to continue beating when it is so shattered like it is. Again, unless you have experienced that kind of loss there is no way you could possible begin to understand how this feels. The biggest part of my life as I knew it died and will never be repaired since Wednesday, December 1, 2010. It is a moment in time that I will never forget nor will it ever get easier or hurt less. It just won't.
I truly do my best every day not to live in that place, however, there are days when there is no changing how that feels and for the most part I can usually hide that from most and fake it with the best of them, but today was hard. I don't know why and typically I cannot explain what triggers it, but today was one of those days for me.
I felt like I was on the verge of tears all day and felt like I would fall apart at any given second. I had decided once I left the office to get daddy today that I would only check email to address anything urgent, but just as I was leaving the office someone had a request that required me to work. That just added to my day of frustration as all I really wanted to do is just sit and survive until Tebo got home with as little interaction as possible. Well, I guess best laid plans never seem to work out do they?
Life is hard. Life without my son, my only child, is literally the hardest thing I have done and ever will do. It sucks! It sucks big time!
I hate life without my son on this earth. I truly do hate it, but I don't have a choice. Suicide is NOT an option and being self absorbed is NOT an option. I have people depending on me. Retirement is NOT an option at this time so I will continue to just fake it until the day comes when I have the freedom to just have a freaking day when I don't have to fake being "OKAY" and just be sad for a moment. I guess until that day comes I will continue to figure out how to keep going when all I want to do is join my son in heaven.
Thursday, February 20, 2020
"Larry's World"
Alzheimer's and Dementia is hard and not for the faint of heart as I have said before, however, you have to find joy and laughter when you can. There are very few (if any) days that I pick daddy up from Pace that there isn't a "story" of events that took place that day. Yesterday was no exception to that. Here is how the afternoon conversation went as I picked him up.
At first he seemed very frustrated and testy. The young lady at the front desk caught me to give me a piece of paper which turned out to be his daily report. I said has he had a bad day and she responded with, no, not really, he seemed to have a good day. I said, good. He seems frazzled right now. We walk out and he says, boy has this been a messed up day. I'm thinking, oh Lord, now what. So, they have a new activity director and he isn't a huge fan (yet). He says she talks to them like they are little kids and he does not like that and she pushes for them to participate. Well, in her defense, she is new and they want them to participate as much as possible in as many activities as possible as that helps this disease with the socializing and working his brain muscles. So I just let him vent. Then the fun starts. He says, I really about messed up today. I said what did you do? This is the rest of the story:
Daddy: Well, Bo (he's a worker at Pace) came to me and said, "do you want a sweet treat? It's yours". Of course he said yes. Bo hands him a jar with blue stuff in it, but no spoon or fork so daddy puts some in his hand and tries it. It was crunchy so he chewed it up and his first thought is it was salty, but he just kept eating on it until his first bite was gone. Bo comes back over and said, did you eat some of that? Daddy said, "well, yes, you gave it to me". Bo kind of freaks out, grabs a nurse, she then brings him a toothbrush, toothpaste, and a cup and says "brush your teeth really well". He said why? Wait for it.... That's crystals that you made, not food. LOL! They were worried to death at first. Now, had this been something terribly dangerous I highly doubt they would have even allowed them to make it. Also, he had his crystals he made (and of course Miss Emma's crystals), because they are in the freezer at home. I'm not sure where these other crystals came from, but I figured if it was that big a deal they would have gone straight to Dr. Martin and had him checked out. So, of course, since he thought this was a big deal and he had really messed up I just said, well, if you start pooping crystals we will know, huh? Then I said, you know, if I could request, if you are going to poop anything could you make it diamonds. We had a big laugh. Then daddy said if his poop was shiny he would put it in a jar and take it back to Bo. LOL! That man definitely does not make for a boring day.
His daily report was super cute and the first one we have received. It stated this:
Larry... 2-19-20
Vital signs: BP 97/63, heart rate: 63, oxygen level: 91%
Intake lunch: 100% (of course)
Bowel movement (yes) -- Self care
Mood: Cheerful
Day center activity/participation: Full (not surprised)
Misc. information for the day:
Had a very good, laugh and joked around.
LOL... He definitely makes his days good regardless where he is. You have to find those little moments that remind you that you are doing the right thing for him at this stage in his life.
At first he seemed very frustrated and testy. The young lady at the front desk caught me to give me a piece of paper which turned out to be his daily report. I said has he had a bad day and she responded with, no, not really, he seemed to have a good day. I said, good. He seems frazzled right now. We walk out and he says, boy has this been a messed up day. I'm thinking, oh Lord, now what. So, they have a new activity director and he isn't a huge fan (yet). He says she talks to them like they are little kids and he does not like that and she pushes for them to participate. Well, in her defense, she is new and they want them to participate as much as possible in as many activities as possible as that helps this disease with the socializing and working his brain muscles. So I just let him vent. Then the fun starts. He says, I really about messed up today. I said what did you do? This is the rest of the story:
Daddy: Well, Bo (he's a worker at Pace) came to me and said, "do you want a sweet treat? It's yours". Of course he said yes. Bo hands him a jar with blue stuff in it, but no spoon or fork so daddy puts some in his hand and tries it. It was crunchy so he chewed it up and his first thought is it was salty, but he just kept eating on it until his first bite was gone. Bo comes back over and said, did you eat some of that? Daddy said, "well, yes, you gave it to me". Bo kind of freaks out, grabs a nurse, she then brings him a toothbrush, toothpaste, and a cup and says "brush your teeth really well". He said why? Wait for it.... That's crystals that you made, not food. LOL! They were worried to death at first. Now, had this been something terribly dangerous I highly doubt they would have even allowed them to make it. Also, he had his crystals he made (and of course Miss Emma's crystals), because they are in the freezer at home. I'm not sure where these other crystals came from, but I figured if it was that big a deal they would have gone straight to Dr. Martin and had him checked out. So, of course, since he thought this was a big deal and he had really messed up I just said, well, if you start pooping crystals we will know, huh? Then I said, you know, if I could request, if you are going to poop anything could you make it diamonds. We had a big laugh. Then daddy said if his poop was shiny he would put it in a jar and take it back to Bo. LOL! That man definitely does not make for a boring day.
His daily report was super cute and the first one we have received. It stated this:
Larry... 2-19-20
Vital signs: BP 97/63, heart rate: 63, oxygen level: 91%
Intake lunch: 100% (of course)
Bowel movement (yes) -- Self care
Mood: Cheerful
Day center activity/participation: Full (not surprised)
Misc. information for the day:
Had a very good, laugh and joked around.
LOL... He definitely makes his days good regardless where he is. You have to find those little moments that remind you that you are doing the right thing for him at this stage in his life.
Monday, February 17, 2020
Inside screams
Oh my gosh!!!! This has been a challenging couple of weeks and this past week and weekend were no exception. Daddy has been in a mood. I'm not sure if it's a mood or just the agitation and getting used to the new medication, but whatever it is, it has pushed me to almost a breaking point. I'm worn out, hurt, and mad all at the same time. It's hard to manage through his moods and work and continue to keep him happy and comfortable. NO! It is not to the point that he has to go into a nursing home or anything like that, it's just wearing on my mental and emotional state as well as my physical state. I am sure it's wearing on Tebo as well, but he does a great job of hiding that from me most of the time.
Friday was a bad day at Pace (first one since starting). He couldn't find anything nice to say about anything. Thinking I could improve his mood I got him home as quickly as I could and fixed him peanut butter crackers for a snack and gave him his "vitamin". Tebo offered to bring dinner home so we didn't have to go out so that worked out well. He was still very much a smart ass towards me and critical of Tebo's size/weight, but we made it through the night for him to go to bed by 8:15 with no major issues.
Saturday morning he slept until 8:00 am and that was wonderful. He didn't seem interested in doing much so I found tasks around the house for him to help me with thinking that would help. He helped me sweet the garage floor and dust his room and he vacuumed his and Chad's room. At that point he was tired so he sat the rest of the evening and watched TV. Saturday night he went to bed again around 8:15.
Sunday morning he was up at 4:00 am. I got up and got his coffee and started with his breakfast and meds. At 8:30 he was napping hard in his chair so I suggested he lay on his bed and nap. He didn't hesitate and I do think he was sleep walking at this point based on how he got on his bed. He slept until 10:45 am. I knew he would want something to snack on before we left for Tebo and I to get pedicures so I fixed him a light snack. He was still a bit foggy I think so I had to remind him to eat. We left just before noon and he sat in one of the pedicure chairs next to Tebo and napped off and on while we got our treatments. Once we left there we took him to lunch and he did pretty good. We got home and all 3 napped in the living room for about 45 minutes and then Tebo and I got started getting ready for the kids to come over for family dinner. He did decent, but he still seemed off. We made it through dinner and cleaned up the kitchen and the kids realized he was fading so we got the house quiet and they visited for a few more minutes and they left just before 7:00 so I could get his nightly routine started. He went to bed at 8:00.
Monday morning he was up and dressed by 4:30 am. He was very off and agitated for some reason. After his breakfast he sat in his chair and started napping. I slipped into my room to take a call and about 45 minutes he was awakened by Dawn calling. He said nothing that was accurate and was telling her that I was still in the bed and he was by himself. He was NOT by himself and I had been up. He didn't even remember he had already had breakfast. Once he was off the phone with her I found a series about dogs and turned it on so he could rest if he wanted to and put his blanket on him. I guess we will see how the rest of this day goes.
Pace was closed today due to President's Day so I am trying to work from home, but feel I need to stay in the kitchen this morning until I see how he is going to do.
I hate these days, but even more when it lasts for days and nights at a time. :(
Friday was a bad day at Pace (first one since starting). He couldn't find anything nice to say about anything. Thinking I could improve his mood I got him home as quickly as I could and fixed him peanut butter crackers for a snack and gave him his "vitamin". Tebo offered to bring dinner home so we didn't have to go out so that worked out well. He was still very much a smart ass towards me and critical of Tebo's size/weight, but we made it through the night for him to go to bed by 8:15 with no major issues.
Saturday morning he slept until 8:00 am and that was wonderful. He didn't seem interested in doing much so I found tasks around the house for him to help me with thinking that would help. He helped me sweet the garage floor and dust his room and he vacuumed his and Chad's room. At that point he was tired so he sat the rest of the evening and watched TV. Saturday night he went to bed again around 8:15.
Sunday morning he was up at 4:00 am. I got up and got his coffee and started with his breakfast and meds. At 8:30 he was napping hard in his chair so I suggested he lay on his bed and nap. He didn't hesitate and I do think he was sleep walking at this point based on how he got on his bed. He slept until 10:45 am. I knew he would want something to snack on before we left for Tebo and I to get pedicures so I fixed him a light snack. He was still a bit foggy I think so I had to remind him to eat. We left just before noon and he sat in one of the pedicure chairs next to Tebo and napped off and on while we got our treatments. Once we left there we took him to lunch and he did pretty good. We got home and all 3 napped in the living room for about 45 minutes and then Tebo and I got started getting ready for the kids to come over for family dinner. He did decent, but he still seemed off. We made it through dinner and cleaned up the kitchen and the kids realized he was fading so we got the house quiet and they visited for a few more minutes and they left just before 7:00 so I could get his nightly routine started. He went to bed at 8:00.
Monday morning he was up and dressed by 4:30 am. He was very off and agitated for some reason. After his breakfast he sat in his chair and started napping. I slipped into my room to take a call and about 45 minutes he was awakened by Dawn calling. He said nothing that was accurate and was telling her that I was still in the bed and he was by himself. He was NOT by himself and I had been up. He didn't even remember he had already had breakfast. Once he was off the phone with her I found a series about dogs and turned it on so he could rest if he wanted to and put his blanket on him. I guess we will see how the rest of this day goes.
Pace was closed today due to President's Day so I am trying to work from home, but feel I need to stay in the kitchen this morning until I see how he is going to do.
I hate these days, but even more when it lasts for days and nights at a time. :(
Tuesday, February 11, 2020
Finding Words
You never really think about the day when you will have difficulty finding words to everyday things that you definitely know (or at least at one time you did). If you have lived in a family with Alzheimer's and/or Dementia (or both), you will have a hard time understanding or grasping the concept of watching your loved one not be able to find ordinary words.
For instance, just today, I was driving daddy to Pace of the Ozarks on my way to work and he was trying to tell me about the black Angus cows in the pasture. We grew up with pastures and cows, but today he could not find the word pasture. He called it everything he could possibly think of and none were even close. It took me a bit to figure out what he was referring to and when I finally did he said, well, duh, I knew pasture and then called himself dumb. I said you aren't dumb daddy, we all forget words at times. Sadly this is the norm now. He also cannot always see an object and know the name of it or how it is used. That's really hard to watch when he has known these things your whole life.
It is also scary to think I may walk this same journey one day myself and having my mom, grandmother, and now daddy with this same dreadful disease it is definitely something to cause me pause.
As we continue to navigate this disease and our new normal I am trying to document as much as I can so I don't forget our journey and maybe help someone else that may be just now finding themselves in the same spot.
It is hard and it is not for the faint at heart. Everyday is a new day and you never know if you are getting a Toddler or a Seenager… It's also possible to have both in one day. The trickiest part for me has been finding the balance between caregiver and him still being my father and keeping that respect I need to have for my father and still maintain some type of sanity at home. It's not an easy thing to balance.
There are some days that I get it all wrong and nothing I do is right enough and there are other days when we breeze through the day with laughter and love. I treasure those breezy days and try to forget the wrong days. That's easier said than done, but I do try.
We haven't gotten to the point that he needs physical help bathing, but I do have to lay his clothes out and help him get undressed. I don't mind doing this, it will be the actual bathing that will be hard for me and I know would be hard for him. We struggle at times with his eating and choking, but if I stay close and pay attention we manage just fine. He just doesn't empty his mouth before taking another bite and fills his mouth so full and then talks. This is usually when he chokes. He gets mad at me and pouts when I remind him to slow down and put his fork down until he empties his mouth, but if I don't do this he will choke. I'm going to do my best not to let that happen on my watch if I can at all help it. Yes, I may make him mad, but the bright side of this dreadful disease is he will forget and tomorrow will be a new day and a different day. If I had to find some sunshine in this journey, that would be it.
It would be my hope that no one else had to experience this disease with their loved one, but fact is most likely most will. That's sad, but with technology today I'm afraid this will be more of a reality for our future generations as we don't have to think or remember anything much anymore. That's really scary.
Hopefully time will provide education, training, hope, and maybe even a cure one day, but until then, pray that you do not have to walk this journey and if you do, pray that you have the support of family and friends and even outsiders like I have with Pace of the Ozarks. I'm not sure how I could do this without that and I know it will only get worse.
For instance, just today, I was driving daddy to Pace of the Ozarks on my way to work and he was trying to tell me about the black Angus cows in the pasture. We grew up with pastures and cows, but today he could not find the word pasture. He called it everything he could possibly think of and none were even close. It took me a bit to figure out what he was referring to and when I finally did he said, well, duh, I knew pasture and then called himself dumb. I said you aren't dumb daddy, we all forget words at times. Sadly this is the norm now. He also cannot always see an object and know the name of it or how it is used. That's really hard to watch when he has known these things your whole life.
It is also scary to think I may walk this same journey one day myself and having my mom, grandmother, and now daddy with this same dreadful disease it is definitely something to cause me pause.
As we continue to navigate this disease and our new normal I am trying to document as much as I can so I don't forget our journey and maybe help someone else that may be just now finding themselves in the same spot.
It is hard and it is not for the faint at heart. Everyday is a new day and you never know if you are getting a Toddler or a Seenager… It's also possible to have both in one day. The trickiest part for me has been finding the balance between caregiver and him still being my father and keeping that respect I need to have for my father and still maintain some type of sanity at home. It's not an easy thing to balance.
There are some days that I get it all wrong and nothing I do is right enough and there are other days when we breeze through the day with laughter and love. I treasure those breezy days and try to forget the wrong days. That's easier said than done, but I do try.
We haven't gotten to the point that he needs physical help bathing, but I do have to lay his clothes out and help him get undressed. I don't mind doing this, it will be the actual bathing that will be hard for me and I know would be hard for him. We struggle at times with his eating and choking, but if I stay close and pay attention we manage just fine. He just doesn't empty his mouth before taking another bite and fills his mouth so full and then talks. This is usually when he chokes. He gets mad at me and pouts when I remind him to slow down and put his fork down until he empties his mouth, but if I don't do this he will choke. I'm going to do my best not to let that happen on my watch if I can at all help it. Yes, I may make him mad, but the bright side of this dreadful disease is he will forget and tomorrow will be a new day and a different day. If I had to find some sunshine in this journey, that would be it.
It would be my hope that no one else had to experience this disease with their loved one, but fact is most likely most will. That's sad, but with technology today I'm afraid this will be more of a reality for our future generations as we don't have to think or remember anything much anymore. That's really scary.
Hopefully time will provide education, training, hope, and maybe even a cure one day, but until then, pray that you do not have to walk this journey and if you do, pray that you have the support of family and friends and even outsiders like I have with Pace of the Ozarks. I'm not sure how I could do this without that and I know it will only get worse.
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| After his open heart surgery |
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| Showing out as usual |
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| Those legs though |
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| Strutting his stuff |
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| Working out |
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| Him and that holster LOL |
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| Working out his arms |
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| That hat... |
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| So handsome |
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| Always smiling (well, most of the time) |
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| Texting because Stacy and I were. LOL |
Friday, February 7, 2020
Sadness
Sadness comes in many forms and many things can make us sad. Our family is continuing to experience sadness in many ways. Tebo and I have lost all our moms in 1 1/2 years time. We are watching another sister battle breast cancer and she learned last week that she will still have to undergo another unexpected surgery to remove the remaining lymph nodes on her left side (the side that was unexpected to actually have cancer, just to learn after her pathology showed positive). We personally have three families that are falling apart and there is nothing we can do to help, but listen and be there for them. We, Tebo and I, are experiencing challenges at home each day as we navigate this terrible Alzheimer's & Dementia disease with daddy. Some days are a breeze and other days are a true challenge, but the most tiring part is the constant change and not being prepared for each episode each day.
While navigating through all the family stuff we still have to carry on with our full time jobs and currently this week and next week my work world has blown up (again) with data changes so we are basically having to start over and I have limited time in the office which is making this task very difficult. However, I am fortunately to have a job and right now we are not prepared for me to stay home so that is a blessing, although very tiring and challenging as it feels as though I am working two full time jobs between the office and daddy. I feel the tiredness and sadness throughout my entire body.
I am sad for my sister and not being able to be there for her physically, I am sad to watch daddy decline with this terrible disease and knowing there is really nothing I can do for him. I am sad I can't stay home and focus on him and my husband and have the flexibility to go to my sister and be with her when she needs it most. I'm sad that I can't spend more time with my youngest sister and her kids. I just miss being with my family members more regularly. I'm sad that I can't see my son and kiss his forehead and hug him tight. I am also sad that I feel I am letting my husband down by not being able to give him my undivided attention.
I am, however, happy and blessed to be able to care for daddy and that I have a husband that is so supportive and strong when I cannot be. I'm happy that my sister has such a supportive and strong husband and a strong group of friends and a dedicated daughter that are there for her. I'm very happy that our youngest sister had the flexibility to go be with her while she went through surgery and days after as she has already gone through her battle with breast cancer being diagnosed February 8, 2012. She is now 8 years cancer free and that is a huge blessing I know my other sister will celebrate that milestone as well. She just has to walk this journey and keep fighting and she will get there.
I am blessed that we have such a strong family and support system when we need it the most. It's okay to feel sadness, you just can't stay there. I remind myself everyday and some days multiple times a day as it would be super easy to just stay in a dark place and disappear, but that is no good for anyone so I keep going each day and do the best I can. Some days I do decent and other days I fail miserably, but I do keep trying each day.
For my sister, Paige, fighting breast cancer right now, I pray the Lord keeps you strong and gives you peace and comfort in knowing you've got this with his help and you will be OKAY. For my daddy I pray the Lord has mercy on you and doesn't allow you to struggle too long with this disease and that you continue to keep your wonderful personality (minus "Walter") and love of life. For my husband (who I know never reads these), I pray that you reap blessings beyond measure for all you do for me and my family and for being so willing to open our home and disrupt our lives to care for daddy. I pray that you don't have too much sadness over losing your mom and brother and have peace and find comfort in knowing they are in heaven with Chad and Billy. For the rest of my family I pray you are healthy and happy and we are done with cancer diagnoses for a long time to come if not forever and that we are all spared from this dreadful disease known as Alzheimer's and Dementia.
While navigating through all the family stuff we still have to carry on with our full time jobs and currently this week and next week my work world has blown up (again) with data changes so we are basically having to start over and I have limited time in the office which is making this task very difficult. However, I am fortunately to have a job and right now we are not prepared for me to stay home so that is a blessing, although very tiring and challenging as it feels as though I am working two full time jobs between the office and daddy. I feel the tiredness and sadness throughout my entire body.
I am sad for my sister and not being able to be there for her physically, I am sad to watch daddy decline with this terrible disease and knowing there is really nothing I can do for him. I am sad I can't stay home and focus on him and my husband and have the flexibility to go to my sister and be with her when she needs it most. I'm sad that I can't spend more time with my youngest sister and her kids. I just miss being with my family members more regularly. I'm sad that I can't see my son and kiss his forehead and hug him tight. I am also sad that I feel I am letting my husband down by not being able to give him my undivided attention.
I am, however, happy and blessed to be able to care for daddy and that I have a husband that is so supportive and strong when I cannot be. I'm happy that my sister has such a supportive and strong husband and a strong group of friends and a dedicated daughter that are there for her. I'm very happy that our youngest sister had the flexibility to go be with her while she went through surgery and days after as she has already gone through her battle with breast cancer being diagnosed February 8, 2012. She is now 8 years cancer free and that is a huge blessing I know my other sister will celebrate that milestone as well. She just has to walk this journey and keep fighting and she will get there.
I am blessed that we have such a strong family and support system when we need it the most. It's okay to feel sadness, you just can't stay there. I remind myself everyday and some days multiple times a day as it would be super easy to just stay in a dark place and disappear, but that is no good for anyone so I keep going each day and do the best I can. Some days I do decent and other days I fail miserably, but I do keep trying each day.
For my sister, Paige, fighting breast cancer right now, I pray the Lord keeps you strong and gives you peace and comfort in knowing you've got this with his help and you will be OKAY. For my daddy I pray the Lord has mercy on you and doesn't allow you to struggle too long with this disease and that you continue to keep your wonderful personality (minus "Walter") and love of life. For my husband (who I know never reads these), I pray that you reap blessings beyond measure for all you do for me and my family and for being so willing to open our home and disrupt our lives to care for daddy. I pray that you don't have too much sadness over losing your mom and brother and have peace and find comfort in knowing they are in heaven with Chad and Billy. For the rest of my family I pray you are healthy and happy and we are done with cancer diagnoses for a long time to come if not forever and that we are all spared from this dreadful disease known as Alzheimer's and Dementia.
Monday, February 3, 2020
Bad moments
With Alzheimer's there are good moments and there are bad moments. Last night, Feb. 2, 2020, Super Bowl Sunday we had one of the bad moments. Daddy had been really good all day. He helped Tebo clean up the patio, filled the bird feeders, and took the trash out for him. He seemed to enjoy all of that. We had an early dinner and that went well, but suddenly after dinner and I got the kitchen cleaned up I simply said, daddy, it's 71 degrees outside, it might be nice to get some fresh air and sit on the patio with us. Well, who knew that would set him off, but it did. He said you keep on and I will knock your feet right out from under you! I said, Daddy, don't be an ass (yes, I did say that as a reaction that now I wish I hadn't done). He said I'm just saying. Well, Tebo heard enough to know something was wrong and I just told him (in front of daddy) that he has to stop threatening me because it's not right. Daddy said, I figured that out. I looked at daddy and just said, not cool, not cool daddy. He said I know.
I dropped it at that point and said nothing more and acted and treated him as normal. I helped him get his shower and sat inside with him after his shower so he wouldn't be alone. Once he got his meds and drops I told him his bed was ready whenever he was and of course he was ready. That was fine, because honestly I was kind of ready myself for him to go to bed. I helped him to bed and tucked him in like every other night and he said, I'm sorry I was a butt-head tonight. I said that's ok, sometimes you have bad evenings or moments. I said I love you and I will see you in the morning. He said it back and that was that.
He got up this morning and was very sweet and hugged me first thing. I got his breakfast, medicine, and drops done and off we went to Pace.
Tonight could be interesting as I have to get my hair cut after picking him up, but I have packed him a snack, his "vitamins", and bottled water and I made the appointment just for a trim so we wouldn't have to be there long and then off to the house we will go.
I asked Tebo to pick up sandwiches or something on the way home so he won't have to wait or get back out tonight. Hopefully that will help his evening go better than expected. Fingers crossed.
I dropped it at that point and said nothing more and acted and treated him as normal. I helped him get his shower and sat inside with him after his shower so he wouldn't be alone. Once he got his meds and drops I told him his bed was ready whenever he was and of course he was ready. That was fine, because honestly I was kind of ready myself for him to go to bed. I helped him to bed and tucked him in like every other night and he said, I'm sorry I was a butt-head tonight. I said that's ok, sometimes you have bad evenings or moments. I said I love you and I will see you in the morning. He said it back and that was that.
He got up this morning and was very sweet and hugged me first thing. I got his breakfast, medicine, and drops done and off we went to Pace.
Tonight could be interesting as I have to get my hair cut after picking him up, but I have packed him a snack, his "vitamins", and bottled water and I made the appointment just for a trim so we wouldn't have to be there long and then off to the house we will go.
I asked Tebo to pick up sandwiches or something on the way home so he won't have to wait or get back out tonight. Hopefully that will help his evening go better than expected. Fingers crossed.
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