One thing to you can be sure of is that life goes on, with or without your involvement. Our lives have been forever changed by ALS, in fact we were all personally changed because of it. Nothing about our futures happened the way we thought it would.
We thought that Mom would live to be in her 90's, and we thought she would outlive Dad. After all she was ten years younger than him. My brother and I even discussed how we would take care of our aging parents. But as of yet, we didn't look at them as being old. Mom was planning on working till she was at least 70. When she passed she was only 66. Dad, who was 76 was still working until it was apparent that Mom needed him home more. I was doing fine taking care of her, Dad just wanted to be there. And that was ok with me.
My parents were full of life and still very much in love. Even today, Dad talks about how good they were together. He keeps the house just the way she liked it as if she would arrive home any day.
It has been five months since Mom has passed away and we keep her memory alive each day. Everything reminds me of her and quite often I wish I could just call her up and chat awhile. Because life still goes on.
My daughter just got married and I am expecting another nephew any day now. Birthdays have come and gone as well as a couple of holidays. Mom and Dad's anniversary was this month. Life goes on.
Dad has gone back to work. Me, well, I am still trying to figure out what to do now. I made so many changes to be here for Mom. Now, well, I am just here.
I do plan on still blogging about our journey. Because I don't believe that you actually ever get over something. It just becomes part of who you are.
Thank you for reading this blog and being a part of our lives.
More to come.....
Monday, August 12, 2013
Happy New Year????
Even though our attitudes were upbeat, we could not ignore the signs that we were facing a struggle ahead. Mom was just too tired for her normal activity. Her baths were now sponge baths in bed as it was just to traumatizing for her to be moved to the shower bench and back. She no longer had the strength in her upper body to hold herself up, so we had to do it for her if she was not in bed or in her chair.
Her eating became less and less. We had to wake her just to keep up the nutrients in her body. Another thing was we had to be careful not to overfeed her, that was a risk as well. Her medicines began to change as well. She needed more of the medicine to help her relax and breath and less of the blood pressure medicine. She was using oxygen most all the time now.
The changes in her just from December to January were dramatic. Her voice was all but gone. And she would call out to me, "maamaa" and I would come to her side. That was pretty much all she could say. She wrote everything else down and that was becoming a struggle. I kept her last notes. They were hard to read, not because of the handwriting, but because of what she had written.
I called her closest friends and family, told them they should come visit. We just didn't have a timeline anymore and if they wanted to see Mom, they needed to come.
Mom could only handle visiting for a short time before she just had to sleep. The company was good for Dad. He was with her constantly. Making sure her legs were in the right spot. Or that she was warm or cool enough. Adjusting the oxygen tube so that she was comfortable. Calling her his Beautiful Lady, and kissing her on her forehead. He was amazing. His love for his bride was beyond compare. He worried about her terribly but would not let it show in front of her. We had quiet talks about the future and he would tear up, and I knew we had to stop and finish later.
The future was hard to think about. Actually, the future without Mom was hard to think about.
She and Dad had been married over 48 years. Not counting the four years that they dated before they got married. Over their marriage they helped out several family and friends in various ways. At one point Dad and I counted over 20 people had lived with them, and they helped purchase 7 cars/trucks for people. They were very involved in their church and invited many people over for dinner. They were always involved in something. Mom did several weddings and made quilts for babies and Teen Challenge men. I can't remember when they were not busy helping someone else out.
Even now, at this horrible time in their lives, they seemed to bless those who came to visit.
January ended with Mom once again stable. She was tired and slept most of the day, as well as all night. But she was stable again. We found comfort in that.
February came with Mom's breathing once again a struggle. She was short of breath quite often and needed air circulating in the house as well as being on the Oxygen. We started to use the morphine again to give her comfort. On The 11th of February, the nurse came and stated that we should think about a hospital bed for Mom. We agreed, it would be delivered on Thursday, Valentine's day.
My daughter Amber, who lived away at this time, came to visit. It was good for Mom, she smiled a lot and enjoyed us girls together again.
This visit was a special one.
Her eating became less and less. We had to wake her just to keep up the nutrients in her body. Another thing was we had to be careful not to overfeed her, that was a risk as well. Her medicines began to change as well. She needed more of the medicine to help her relax and breath and less of the blood pressure medicine. She was using oxygen most all the time now.
The changes in her just from December to January were dramatic. Her voice was all but gone. And she would call out to me, "maamaa" and I would come to her side. That was pretty much all she could say. She wrote everything else down and that was becoming a struggle. I kept her last notes. They were hard to read, not because of the handwriting, but because of what she had written.
I called her closest friends and family, told them they should come visit. We just didn't have a timeline anymore and if they wanted to see Mom, they needed to come.
Mom could only handle visiting for a short time before she just had to sleep. The company was good for Dad. He was with her constantly. Making sure her legs were in the right spot. Or that she was warm or cool enough. Adjusting the oxygen tube so that she was comfortable. Calling her his Beautiful Lady, and kissing her on her forehead. He was amazing. His love for his bride was beyond compare. He worried about her terribly but would not let it show in front of her. We had quiet talks about the future and he would tear up, and I knew we had to stop and finish later.
The future was hard to think about. Actually, the future without Mom was hard to think about.
She and Dad had been married over 48 years. Not counting the four years that they dated before they got married. Over their marriage they helped out several family and friends in various ways. At one point Dad and I counted over 20 people had lived with them, and they helped purchase 7 cars/trucks for people. They were very involved in their church and invited many people over for dinner. They were always involved in something. Mom did several weddings and made quilts for babies and Teen Challenge men. I can't remember when they were not busy helping someone else out.
Even now, at this horrible time in their lives, they seemed to bless those who came to visit.
January ended with Mom once again stable. She was tired and slept most of the day, as well as all night. But she was stable again. We found comfort in that.
February came with Mom's breathing once again a struggle. She was short of breath quite often and needed air circulating in the house as well as being on the Oxygen. We started to use the morphine again to give her comfort. On The 11th of February, the nurse came and stated that we should think about a hospital bed for Mom. We agreed, it would be delivered on Thursday, Valentine's day.
My daughter Amber, who lived away at this time, came to visit. It was good for Mom, she smiled a lot and enjoyed us girls together again.
 |
| Amber feeding her Nana, last time they were together. |
The hospital bed arrived on time on Valentines Day. So did the nurse. She listened to Mom's lungs and after a brief visit with Mom, we put her down to rest. The nurse spoke with my Dad and I, along with my son, David who was there. She said that Mom's lungs were fading and her breathing was shallow. We were told that this could last several days and then she would most likely just fade away in her sleep. It could perhaps even be a couple of weeks. So we were to keep her as comfortable as possible and just ride it out. Keep feeding, but be aware of how much she would actually need. Since most likely she would not get out of bed much, if at all.
Mom did get out of bed. She got up that afternoon and stayed up till 11 PM that night. My husband surprised us with a visit. And we all talked about how Mom and Dad had their first date on Valentines day some 52 years ago and how that was the holiday that Dad always bought a card on for Mom. They even had their first kiss on Valentines day! We teased them and they teased us. We laughed and Mom's eyes sparkled and it was good.
We put mom in the hospital bed that night around 11 PM. We all told her we loved her and Dad and I kissed her forehead. I hugged her, she hugged me back. Dad went to bed in a single bed next to Mom. We went to our room, and snuggled, so glad my husband was here. I filled him in on the day and what our near future may hold. We drifted off to sleep in each other's arms.
Dad called me at 4:30 AM, (it was the morning of the 15th), "She's gone" he said with a crack in his voice. "What, NO, it's not time!" was my response.
I ran to their room, there she was, looking like she was just sleeping, but she wasn't breathing, still warm, he woke up because it just didn't sound right. He had heard her take her last breath and that woke him up. He was so attentive to her every sound and movement. He said he just knew something wasn't quite right. I was on one side of her, Dad on the other. I held her hand and cried. "It's just too soon! We just got the hospital bed! This can't be real!"
I looked over at Dad, he was crying, he told me not to talk to him, he just couldn't take it right now. He needed time.
I called Hospice. The funeral home director came next, I took care of that too. Got an outfit out for Mom, the one she wanted to be in for this moment. They came and took Mom away and the bed was empty. Sam, her little dog, was sad and confused. He was always with her. Now he too was alone.
My husband called the kids and my Dad called my brother. We were all in a fog. The air was heavy and our hearts were broken. How can we console each other when we were each hurting so badly in our own ways? We all mourned for the loss of our beloved Mom, Wife, Nana, Friend, our Lottie.
.jpg) |
| My Angel Mother |
Monday, July 29, 2013
Christmas is coming!
"Happy Happy Happy!" was the motto of the month for us! Christmas is coming along with a couple of Birthdays, so we need our party hats on our head and smiles on our faces!
Our month actually started out kind of frustrating. A Red Tail Hawk decided to attack our chickens. It killed our two Silky chickens first, then an Americana chicken, then a Buff Orpington. We were NOT happy. Moreover this hawk is a protected bird. Hmph! The nerve! Our poor "girls" were scared and didn't want to be apart from us. And we worried each time we heard a squawk! We were told by the Fish and Wildlife Dept. that we could fire a few shots in the air, to scare the hawk. It seemed to work, at least for now.
My birthday and Ashley's birthday always meant a lunch to celebrate. We went out and had a great time with some family and friends. That was a morale booster for Mom. She seemed to be getting a handle on things now. We had Christmas to plan for and we even did some shopping. Mom got a new dress to wear and some new nightgowns too. She helped me make a blanket for my husband and we chatted about what I was sewing for the family this year. We always had homemade gifts along with the bought-en ones. She was working on crocheting washcloths and I was sewing potholders, aprons and totes. Ann still came over and made items to help Mom be more comfortable. Her friend Linda came over too. It looked like we were going to have a happy month after all!
We played Christmas music all month long and sang along with joy in our heart! Well, ok, I sang and made Mom laugh! She was a better singer than I and I have a tendency to get a bit goofy on the traditional songs. Mom was planning what we should have for Christmas dinner, even though she could not eat any of it, she still enjoyed the smells of a great meal. We baked and decorated cookies. We shopped on line, and wrapped presents as they came in the mail.
Mom actually became a bit more active this month. She was enjoying being involved in all the Holiday activities and the music helped too. She smiled more and laughed more and shook her finger at me more. Most likely she didn't approve of my dancing to the music.... hahahaha
It was good to see her this way. It was encouraging. We did have to face an ongoing issue with ALS though. She was having more and more trouble keeping herself up. Holding up her upper body was becoming difficult. Her muscles were weak and no longer communicating with her brain. So her faithful friend Ann, made supports for each side while she was in her chair and that helped tremendously. It was easier for Mom to breath with these supports and it also helped with her fatigue. She was getting more and more tired with each effort to support herself, now with what Ann made, she was able to sit up and not have to strain so much.
Christmas day was full of joy and laughter! We all enjoyed the company of each other and laughed at how Garrett was more interested in everyone's gifts but his own. He is quite the kid! Mom did outstanding! She was in a great mood and felt wonderful. She sat with us at each meal and chatted along with us as we ate. Christmas was as perfect as we could have asked for. We read the Christmas story out of the Bible and all prayed together. It was a Hallmark card in the making.
December ended with a simple anniversary celebration for my husband and I. Mom was stable and comfortable. We were all full and satisfied. Life was going ok. We all welcomed the New Year and our expectations were positive and we believed our futures were bright.
Our month actually started out kind of frustrating. A Red Tail Hawk decided to attack our chickens. It killed our two Silky chickens first, then an Americana chicken, then a Buff Orpington. We were NOT happy. Moreover this hawk is a protected bird. Hmph! The nerve! Our poor "girls" were scared and didn't want to be apart from us. And we worried each time we heard a squawk! We were told by the Fish and Wildlife Dept. that we could fire a few shots in the air, to scare the hawk. It seemed to work, at least for now.
My birthday and Ashley's birthday always meant a lunch to celebrate. We went out and had a great time with some family and friends. That was a morale booster for Mom. She seemed to be getting a handle on things now. We had Christmas to plan for and we even did some shopping. Mom got a new dress to wear and some new nightgowns too. She helped me make a blanket for my husband and we chatted about what I was sewing for the family this year. We always had homemade gifts along with the bought-en ones. She was working on crocheting washcloths and I was sewing potholders, aprons and totes. Ann still came over and made items to help Mom be more comfortable. Her friend Linda came over too. It looked like we were going to have a happy month after all!
 |
| Mom in her new blue dress, ready to have lunch with friends. |
 |
| Daniel helping "Nana" Mom wrap presents for Christmas. |
 |
| Mom on Christmas morning in her new nightgown! |
 |
| Our little tree! Nothing too big, or she can't drive around it! |
Mom actually became a bit more active this month. She was enjoying being involved in all the Holiday activities and the music helped too. She smiled more and laughed more and shook her finger at me more. Most likely she didn't approve of my dancing to the music.... hahahaha
It was good to see her this way. It was encouraging. We did have to face an ongoing issue with ALS though. She was having more and more trouble keeping herself up. Holding up her upper body was becoming difficult. Her muscles were weak and no longer communicating with her brain. So her faithful friend Ann, made supports for each side while she was in her chair and that helped tremendously. It was easier for Mom to breath with these supports and it also helped with her fatigue. She was getting more and more tired with each effort to support herself, now with what Ann made, she was able to sit up and not have to strain so much.
 |
| Mom helping me with making the blanket for my husband. |
December ended with a simple anniversary celebration for my husband and I. Mom was stable and comfortable. We were all full and satisfied. Life was going ok. We all welcomed the New Year and our expectations were positive and we believed our futures were bright.
Falling up and down
November started out as a quiet normal month. The Hospice nurses and aids were coming out on a regular time schedule and Ann came over and sewed "convenience" items for Mom. We had a few visits from friends and that is always a moral pick up for Mom.
Garrett turned one! Mom was able to go to his first birthday party! It was important to her to be there for her newest grandson! It was good to be out again and enjoying others in a public place.
Mom really enjoyed herself and she was happy.....
Then we had a tragedy. A very close family member to us, to my Mom, passed away from Stomach cancer. She was diagnosed just after Mom was with her ALS. So they have been corresponding with each other, encouraging each other, praying for each other. Both wanted to live and beat their diseases. Both were strong women, with even stronger faith.
I heard Mom cry out "Noooooo, Not Diana!" Then she slumped in her chair and just bawled! Her crying was uncontrollable. It came from deep within her. She couldn't stop the grief from coming out. It was hard for her to breath, so she went on Oxygen, then on morphine. It was the first time she had to take some, only a couple of drops to get her to be able to breath. She was unable to control the grief, so we had to intervene. She needed to breath and she needed rest.
She cried for Diana, she cried for the loss of an angel on earth and she cried for her own fate. She knew it was coming and the pain of the reality just couldn't be held in any longer. It broke me. After Mom was resting, I went to the opposite end of the house and closed myself in a room, still able to hear her if she needed me, and quietly wept. "How are we going to get through this?" was my cry out to God. "Where are you in all of this?"
Thanksgiving came by surprise. It was all a blur. We had each other, Mom was still here, so we were thankful, but we all still hurt over the loss of Diana and were all worried about Mom. It was a quiet day.
Mom's sister and brother in law came to visit. It was her daughter that passed away. So the visit was short, but my Aunt just had to see Mom one more time. Traveling was hard on her. My Aunt was the oldest, Mom was the youngest in a family of six kids. Mom was basically raised with my Aunts children. So she was very close to that family. The visit was a sweet one, but sadness still lingered between them both.
The grief took its toll on Mom. She had digressed some, too much. Her speech was obviously effected and so was her moral. It seemed as though she was giving up. She was just sad and begin to show an "I don't care anymore" attitude. This had to change. I wasn't going to let her give up that easy, nope, not happening on my watch!
We needed to refocus, that was my new plan, changing the atmosphere. One from sadness and sorrow to happy, happy, happy!
Friday, July 19, 2013
As the season changes
As the season changes, so do we. We can't help it. Oh some of our traits stay the same, but life changes us. What we experience changes us. We cannot flee circumstances. We can only choose how do deal with them.
September was a quiet month. Nothing out of the ordinary at least. Ashley moved closer to us, that was good. She was a real blessing around the house. Amber was also there, helping where she could. It was nice to have both of my daughters there. Mom enjoyed having them around. She was always asking them to "bake" something. Mom lived her life though us, cooking, cleaning, laundry and sewing. Her friend Ann came over and she and I sewed together. She made things for Mom and I just tried to make things... anything. I was still learning how to use the machines Mom had to their fullest potential.
Dad's birthday was this month. We made him a German Chocolate Cake, his favorite next to Angel Food. It was a quiet celebration. Mom was mostly getting her food through her tube, so eating cake was a treat. She just never felt hungry and swallowing was such a chore.
Now mind you, Mom was still using the facilities. She had great bladder control and we would lift her out of her chair onto the toilet and then back to her chair again. She was just about completely reliant on us for her transfers. Her legs were useless to her. Same with the shower. I would lift her onto the shower seat and then pick her up when it was done. Help her dry off and dress her. I dressed her everyday. Helped her with her hair and such. She needed us, either myself or Dad, 24/7 at this point.
We started having visitors. Outside visitors, other than family. It was nice since Mom was home-bound. She needed people to come and see her. Oh we could go out, it was just so tiring on her that we saved our trips for doctor appointments and special occasions only.
It begin to be clear that Mom was getting more and more tired. Her body just wasn't regenerating itself anymore. She had lost weight by not eating, but was maintaining a steady weight now that she was tube fed. Her arms were tired and it was obvious that sitting up on her own was becoming difficult.
Her spirits were up and we chatted about her quality of life. Quality, that was our focus now. What can we do to make it better for her? She was not on any pain medicine, except for her hips, she had bursitis. The ALS was not painful. That was a blessing.
October ended with us starting Mom on Hospice. We needed extra help and Mom needed the extra attention. They were nothing short of wonderful! Mom had a nurse come twice a week to check up on her and bath aids also twice a week. She was blessed with a massage once a week. We couldn't have asked for a better group of people to be working with. They all spoiled Mom.
We were also blessed with more friends coming to visit. We had lunches with a couple of ladies that were special to Mom and then a life long couple from Montana came to visit. It was such a special time. Mom's voice was going so I had to interpret quite a bit, or she would write down what she wanted to say. But her eyes sparkled and you could just tell she was happy. Regardless of the fate ahead of her, she was sweet and blessed those who came to see her.
Mom's circumstances changed her. She was a strong, independent woman who took great pride in her marriage and family. She loved the Lord and loved serving Him. Mom was active in many activities, including her quilt club, gardening, painting and crafts. She loved to create and decorate. She also enjoyed singing and listening to the Gathers on CD. Now Mom was a totally dependent woman, who could barely sit up with out support. She could hardly be understood when she was speaking, her voice weak and full of air. She could no longer cry, it was just to hard on her body to do that. She relied on Dad and I to dress her, bath her and feed her. But all of this, these changes, were just circumstances. Mom was still Mom. She still loved all those things, she just was not in a position to partake in them. Her mind was clear and sharp and she still loved serving the Lord. She still took pride in her marriage and family. And watching quilting shows on TV still brought her joy! Circumstances changed her outwardly, but inwardly, Mom was dealing with it. And she was still that strong independent woman that raised me to be the same.
September was a quiet month. Nothing out of the ordinary at least. Ashley moved closer to us, that was good. She was a real blessing around the house. Amber was also there, helping where she could. It was nice to have both of my daughters there. Mom enjoyed having them around. She was always asking them to "bake" something. Mom lived her life though us, cooking, cleaning, laundry and sewing. Her friend Ann came over and she and I sewed together. She made things for Mom and I just tried to make things... anything. I was still learning how to use the machines Mom had to their fullest potential.
Dad's birthday was this month. We made him a German Chocolate Cake, his favorite next to Angel Food. It was a quiet celebration. Mom was mostly getting her food through her tube, so eating cake was a treat. She just never felt hungry and swallowing was such a chore.
Now mind you, Mom was still using the facilities. She had great bladder control and we would lift her out of her chair onto the toilet and then back to her chair again. She was just about completely reliant on us for her transfers. Her legs were useless to her. Same with the shower. I would lift her onto the shower seat and then pick her up when it was done. Help her dry off and dress her. I dressed her everyday. Helped her with her hair and such. She needed us, either myself or Dad, 24/7 at this point.
We started having visitors. Outside visitors, other than family. It was nice since Mom was home-bound. She needed people to come and see her. Oh we could go out, it was just so tiring on her that we saved our trips for doctor appointments and special occasions only.
It begin to be clear that Mom was getting more and more tired. Her body just wasn't regenerating itself anymore. She had lost weight by not eating, but was maintaining a steady weight now that she was tube fed. Her arms were tired and it was obvious that sitting up on her own was becoming difficult.
Her spirits were up and we chatted about her quality of life. Quality, that was our focus now. What can we do to make it better for her? She was not on any pain medicine, except for her hips, she had bursitis. The ALS was not painful. That was a blessing.
October ended with us starting Mom on Hospice. We needed extra help and Mom needed the extra attention. They were nothing short of wonderful! Mom had a nurse come twice a week to check up on her and bath aids also twice a week. She was blessed with a massage once a week. We couldn't have asked for a better group of people to be working with. They all spoiled Mom.
We were also blessed with more friends coming to visit. We had lunches with a couple of ladies that were special to Mom and then a life long couple from Montana came to visit. It was such a special time. Mom's voice was going so I had to interpret quite a bit, or she would write down what she wanted to say. But her eyes sparkled and you could just tell she was happy. Regardless of the fate ahead of her, she was sweet and blessed those who came to see her.
Mom's circumstances changed her. She was a strong, independent woman who took great pride in her marriage and family. She loved the Lord and loved serving Him. Mom was active in many activities, including her quilt club, gardening, painting and crafts. She loved to create and decorate. She also enjoyed singing and listening to the Gathers on CD. Now Mom was a totally dependent woman, who could barely sit up with out support. She could hardly be understood when she was speaking, her voice weak and full of air. She could no longer cry, it was just to hard on her body to do that. She relied on Dad and I to dress her, bath her and feed her. But all of this, these changes, were just circumstances. Mom was still Mom. She still loved all those things, she just was not in a position to partake in them. Her mind was clear and sharp and she still loved serving the Lord. She still took pride in her marriage and family. And watching quilting shows on TV still brought her joy! Circumstances changed her outwardly, but inwardly, Mom was dealing with it. And she was still that strong independent woman that raised me to be the same.
 |
| Here is Dad feeding Mom thru the PEG tube early in the morning. |
 |
| Mom getting a hair cut from my cousin Stef! |
 |
| Mom and Dad with Baby Garrett. He loved to go for rides on her chair. |
October ended with our weeks pretty much on a schedule. Nurse visits, Bath Aids and the once a week Massage for Mom took care of all our extra time. Ann still came over once a week to sew and to spend time with Mom. Hard to believe that they have known each other for over 20 years! Mom's other friend Linda also came to visit. Moms mental state was good. Physically she was changing, but her mind was good. And the fact that she was not forgotten, helped!
Oh, and one more thing this month, another life long friend of hers and one of mine were doing the sweetest thing, sending cards every month plus more. Mom would light up with each card she got in the mail! Again, not to be forgotten, that was good food for her soul!
Don't worry Mom, we wont forget you!
Monday, July 15, 2013
Dear Mom
Dear Mom,
It has only been a few months since you have left us. And I just want to tell you how much we all miss you. We miss your smile, your laugh, your jokes. I even miss you telling me where I missed spots while cleaning. I miss our inside jokes that we had together. Everyone misses you. The grandchildren all miss you. Brother misses you, and most of all, Dad misses you!
I still fix Dad dinner each night and we visit about his day. I am sure you're glad for that! I know how you loved all his stories. We talk about his day, then mine. Anything new that happened with the kids and then he tells me if he needs anything. Bread, lunch meat, fruit... Then we talk about you. Some days are easier than others. I know that it is still hard for him. He loves you sooo much! He takes care of the house for you, and your flowers. It's important to him that everything is the same. Just like you left it.
I miss being able to just give you a call and vent or tell you something funny. So many times I find myself sitting in silence, wishing I was talking to you. It hurts not having you here. But I know that you are in a better place, jumping up and down and praising God and having a wonderful time!
So much is happening right now, you were supposed to be here for. Ashley is getting married on yours and Dad's anniversary! It will be a quiet private wedding. Out in the yard, by your flowers. The boys are getting ready to leave for college and Garrett is getting so big now. The new baby will be here soon and Brother will then have two sons!
I wish I was working on the wedding details with you. Or at least getting your advice on what to serve and how much we need of certain items. I know you will be watching, smiling, looking down on all of us with your tender eyes.
So much to say mom, but most importantly, I love you. You are beautiful and always in my heart! Thank you for being you!
Love,
Your Daughter
It has only been a few months since you have left us. And I just want to tell you how much we all miss you. We miss your smile, your laugh, your jokes. I even miss you telling me where I missed spots while cleaning. I miss our inside jokes that we had together. Everyone misses you. The grandchildren all miss you. Brother misses you, and most of all, Dad misses you!
I still fix Dad dinner each night and we visit about his day. I am sure you're glad for that! I know how you loved all his stories. We talk about his day, then mine. Anything new that happened with the kids and then he tells me if he needs anything. Bread, lunch meat, fruit... Then we talk about you. Some days are easier than others. I know that it is still hard for him. He loves you sooo much! He takes care of the house for you, and your flowers. It's important to him that everything is the same. Just like you left it.
I miss being able to just give you a call and vent or tell you something funny. So many times I find myself sitting in silence, wishing I was talking to you. It hurts not having you here. But I know that you are in a better place, jumping up and down and praising God and having a wonderful time!
So much is happening right now, you were supposed to be here for. Ashley is getting married on yours and Dad's anniversary! It will be a quiet private wedding. Out in the yard, by your flowers. The boys are getting ready to leave for college and Garrett is getting so big now. The new baby will be here soon and Brother will then have two sons!
I wish I was working on the wedding details with you. Or at least getting your advice on what to serve and how much we need of certain items. I know you will be watching, smiling, looking down on all of us with your tender eyes.
So much to say mom, but most importantly, I love you. You are beautiful and always in my heart! Thank you for being you!
Love,
Your Daughter
Summer Fun ~
After a wonderful visit with my husbands family, we arrived back in town in time to take mom to her MDA/ALS doctors appointment. She had an appointment to see the Oregon Lung Specialist just before seeing her normal group of doctors for ALS.
The appointment didn't bring much good news. Mom was losing weight and was more fatigued than usual. Her speech was also digressing. So they gave us a lot of good recommendations for her and then the really bad news came. First of all her lungs were now at 31% of normal predicted value. Not good. Also, they recommended a PEG tube to be inserted into her stomach for feeding. She could still eat soft foods but she just wasn't getting the nourishment that she needed. We got an order for suction equipment for the extra saliva that she couldn't swallow. Also, she needed to be using the oxygen more. All in all they ended with giving us hope. Telling us that these are normal things we would be dealing with and that she could become stable and manage for quite some time like this.
Ok, positive thinking.... that is how we left it. We would be going to more speech and swallowing therapy and some physical therapy as well. It was fine. All fine.... and dandy.
August started off with Mom and Dad's 48th Wedding Anniversary! Mom got all dressed up and Dad took his Bride out to dinner with some close friends. It was so sweet. Dad started taking pictures of her, telling her how beautiful she was. I just smiled and waved, laughed and told them not to be out too late!
Mom looked great too. After they left, I went inside and cried. I cried because Dad couldn't and neither could Mom. I cried for both of them, we all knew, even though no one said it, it would be their last Anniversary together. So, I cried.
The month filled up fast with Mom and her leading men. She saw the doctor for the surgery in putting in her PEG tube. She saw Mr. Bill at Physical Therapy, Dr. Mason. Then the actual surgery. And follow up appointments.
It went really well. Just like that she had a feeding tube sticking out of her stomach. We got issued special formula that we quickly nicknamed her "juice" and we started feeding her. A week later, she was in the ER, not able to breath. Her right lung was collapsing. Things just started happening so fast at this point. We made another appointment with the neurologist and then again with the Oregon Lung Specialist and what was coming back to us was not what we expected to hear.
Time for a sit down with the head doctor. "What was REALLY going on here?" I am a realist and I wanted to know just what I was facing. No more surprises!
So he told us. Mom had the Bulbar onset of ALS. Which is why she was at first given a three to five year life expectancy. Now, that was changing according to how fast the ALS was progressing in her body. Now she had a three to six month life expectancy.
Whoa! Hold on! We just went from a few years to a few months! Just like that! We were doing everything they told us to do and more. Mom was seemingly great, except for the breathing part and eating part. Ok, that stuff is important, but months!
Not only that but she was just diagnosed a year ago this month! (August)
That being said, I knew where I needed to be. Dad knew where he needed to be. Right by Mom. My brother came down every weekend and stayed with us. My husband came as often as he could. My kids came over and hung out to just be there, in case she wanted to tell them something, anything.
We were family, a tight one at that. We ate all our meals together as often as we could and Mom and I spent all our time talking, laughing and doing whatever she wanted. Sometimes that was just sitting quietly together, sometimes we chatted up a storm and followed it with showers of laughter. We were just girls together. I kept house for her and she made sure I got all the cobwebs and dust specks that I missed.
Summer was over, and it wasn't much fun. Fall would be better, it just had to be.
The appointment didn't bring much good news. Mom was losing weight and was more fatigued than usual. Her speech was also digressing. So they gave us a lot of good recommendations for her and then the really bad news came. First of all her lungs were now at 31% of normal predicted value. Not good. Also, they recommended a PEG tube to be inserted into her stomach for feeding. She could still eat soft foods but she just wasn't getting the nourishment that she needed. We got an order for suction equipment for the extra saliva that she couldn't swallow. Also, she needed to be using the oxygen more. All in all they ended with giving us hope. Telling us that these are normal things we would be dealing with and that she could become stable and manage for quite some time like this.
Ok, positive thinking.... that is how we left it. We would be going to more speech and swallowing therapy and some physical therapy as well. It was fine. All fine.... and dandy.
August started off with Mom and Dad's 48th Wedding Anniversary! Mom got all dressed up and Dad took his Bride out to dinner with some close friends. It was so sweet. Dad started taking pictures of her, telling her how beautiful she was. I just smiled and waved, laughed and told them not to be out too late!
Mom looked great too. After they left, I went inside and cried. I cried because Dad couldn't and neither could Mom. I cried for both of them, we all knew, even though no one said it, it would be their last Anniversary together. So, I cried.
The month filled up fast with Mom and her leading men. She saw the doctor for the surgery in putting in her PEG tube. She saw Mr. Bill at Physical Therapy, Dr. Mason. Then the actual surgery. And follow up appointments.
It went really well. Just like that she had a feeding tube sticking out of her stomach. We got issued special formula that we quickly nicknamed her "juice" and we started feeding her. A week later, she was in the ER, not able to breath. Her right lung was collapsing. Things just started happening so fast at this point. We made another appointment with the neurologist and then again with the Oregon Lung Specialist and what was coming back to us was not what we expected to hear.
Time for a sit down with the head doctor. "What was REALLY going on here?" I am a realist and I wanted to know just what I was facing. No more surprises!
So he told us. Mom had the Bulbar onset of ALS. Which is why she was at first given a three to five year life expectancy. Now, that was changing according to how fast the ALS was progressing in her body. Now she had a three to six month life expectancy.
Whoa! Hold on! We just went from a few years to a few months! Just like that! We were doing everything they told us to do and more. Mom was seemingly great, except for the breathing part and eating part. Ok, that stuff is important, but months!
Not only that but she was just diagnosed a year ago this month! (August)
That being said, I knew where I needed to be. Dad knew where he needed to be. Right by Mom. My brother came down every weekend and stayed with us. My husband came as often as he could. My kids came over and hung out to just be there, in case she wanted to tell them something, anything.
We were family, a tight one at that. We ate all our meals together as often as we could and Mom and I spent all our time talking, laughing and doing whatever she wanted. Sometimes that was just sitting quietly together, sometimes we chatted up a storm and followed it with showers of laughter. We were just girls together. I kept house for her and she made sure I got all the cobwebs and dust specks that I missed.
Summer was over, and it wasn't much fun. Fall would be better, it just had to be.
Subscribe to:
Posts (Atom)