April showers bring May flowers

Easter was fun, spent it with family, of course. Loved on Baby Garrett as much as he could stand. We had also bought some baby chicks. Mom enjoyed watching the chicks and also enjoyed holding them. We had these birds so tame, we could pick one up and it would chirp and then cuddle and sleep. 

Mom also continued to work on quilts. She and Ann got Amber's and David's quilt ready to put the back on. They were quite the team. It was fun to watch them work together. They made it all look so easy. Now if I could just figure out how to do it!

They made a Day and Night quilt for David. 

Mom loved springtime and all the blooming trees! So many beautiful colors in the area where we lived in Oregon. Mom and Dad started planning their trip and would be leaving soon. She was  so excited to be able to see old friends and family again. It had been 20 plus years since she and Dad had seem some of these people. Mom was making phone calls and texting and emailing. We went shopping for new outfits that we could pack for Dad to dress her with, color coordinated so that when they did laundry, it was easy for him to put them back together. Everything matched and we packed only what they needed. Mom even got a "smart phone" so that she could navigate for Dad. When they took trips in the past, she held all the maps and he did the driving. This would be just like old times. 

We bought a porta-potty for her to use if there wasn't a handicap restroom available. And we packed an extra shower chair. Dad had everything she could possible need on this trip. I was a worried "mama" letting "my beautiful" go off into the world.... I lectured Dad on what Mom needed, he just laughed at me. I told her to call me if she needed anything!!!! But I knew they would be just fine. Dad actually enjoyed doing everything for his bride. She was his everything and he was hers. 

The trip was nothing short than amazing. Weather was great, no tornadoes when they went to Illinois, Missouri, nor Minnesota. They hit Montana, Idaho and Wyoming too. Those states were the scheduled stops, they had more in between. Some nights they would stay with family and friends, other nights they had a motel. Dad would let Mom rest and sleep as much as she needed, as not to get her too tired. They took their time and a ton of pictures. They laughed and cried at each visit. So many special people in their lives, she just had to see them one more time. She was happy. She was doing what she loved to do, traveling with Dad, and seeing the people she had loved for a lifetime. 

Mom driving up in to the Van.

Dad saying goodbye to Bella, and closing Mom in the Van. 

Their trip ended with them meeting me in La Grande, my youngest son was graduating from High School. It was hard to believe that I missed his entire senior year. Sure we skyped and chatted all the time, but I wasn't there, home that is. I have no regrets for moving in with Mom, I wouldn't of changed that for the world. But it didn't change the fact that I was feeling the loss of being there for my son. My family always came first. So I was torn, and it hurt. My husband was there, okay, but I was Mom and next to my husband, my kids were my life. Family, it was all about family. 

Three generations.... My parents, my brother's family and my family. 

Laughing at how Garret loved to play with David's hair. 

Mom looked good and she was happy.

June turned out to be a great month! After graduation we took a quick trip to California to be there for my cousin's son's wedding. The weather was beautiful and Mom did great! She and Dad couldn't stop talking about how wonderful their "bucket list" trip went. Dad was an excellent nurse to Mom and other than a few down days, everything went off like clockwork. 

The end of June was our vacation time. My husband and I took a nationwide trip to see his family back East. Dad and Mom were recuperating from their trips and all was well in the world.  

Bringing in the New Year 2012

Happy New Year! 2012 was here and our January calendar was full. Or as I called it, Mom's dance card was full! She had so many men in her life, I was having a hard time keeping up with them. Dr. Mason, Dr. Baum, Dr. Andreasen, Bill the Phy Thp., Steve with the braces, Dr. Horner for the skin cancer, just to name a few. Poor Dad, by the time we got home and made dinner, she was ready for bed. We averaged three to four days a week out and about with appointments. 

By the end of the month, her lungs were hitting another stage of the digression. She was having trouble breathing at night. She begin to have panic attacks. Time for medication, two types, one for breathing, one to keep the panic attacks under control. The more upset and scared she got, the harder it was for her to breath. Only problem with the medication was that it made her more tired. And that would interfere with all the appointments. 

By February, Mom was put on a smooth food diet. More mashed potatoes, jello, applesauce, puddings, yogurt, anything smooth she could have. She could eat regular food as long as she chewed it for a long time! Water was a problem too. She kept choking on her water! We started her on utilizing straws. She also had to start tilting her chin down towards her chest to prevent herself from choking while swallowing. It was also more noticeable in her speech. Her "uh huh's" and "unt huh's" all sounded the same. It was as if she was mumbling. We had to keep encouraging her to "over emphasize" her words in order for her to be understood. And to say "yes and "no" so that we could understand if she was OK. Since I was with her the most, I understood her the best. I received a new nick name, "mama" it was easier than "Nurse Betty."  I called her "my beautiful" and made sure she looked good everyday. 

Mom was basically in her wheel chair full time. Except when I got her out to use the bathroom, shower, or go to bed. Sometimes she would sit on the couch with her feet up. But we, Dad and I, would have to lift her and support her for each movement. She was just too unsteady to stand and change positions by herself. Even after going through physical therapy, she was just losing the use of her legs. 

Dad felt it was time for a Handicap van. We were lucky, and found just what we needed on Craig's list. What a difference it made with transporting Mom! 

We went to California to see family. We visited with her older sister, nieces and nephews. We also saw some of my Dad's family. It was good for Mom to be there and be with her family. Hard to say when we could make a trip like that again. 

We ended the month of February with a wheelchair evaluation. That was for Mom getting a customized motorized wheel chair. Now that we had the van, we would just push her up the ramp, with a motorized chair, she could drive up the ramp. (sooo much easier on me! and Dad!

Mom and Dad were still sharing a bed at this time. It was becoming more and more apparent that they needed separate beds. Mom was losing the ability to turn over at night. Once she was in bed, it was difficult for her to move around. She just didn't have the strength nor the control over her lower body. Amazingly though, she still had total control of her bladder and bowels. We installed side rails on Mom's side of the bed for her to use. And that helped. But there was also the issue of breathing. Night breathing was effected, again, because of the body losing ability to sustain itself. She needed to be propped up. Not wanting to give each other up at night, they struggled through as best as they could. Dad loved his bride. He was so sweet with her and was happy to dote on her through out the night as she needed. But twin beds were in the near future. 

We were still taking Mom to the MDA/ALS clinic and one of the suggestions was to get a full length brace for her left leg, it was supposed to give her support when standing.  Since Mom wanted to be as independent as much as possible this was hope for that very thing. We called it "Lucy" for fun. She would wear it around the house. While getting ready in the morning and she could stand at the kitchen sink, or walk around the house without me standing right behind her. 

These pictures show her learning how to walk with "Lucy" and our favorite Physical Therapy guy, Bill standing by to help! Mom always tried to keep a positive attitude. We all did. Even when things seemed disheartening, we kept our chins up. March was just as full as February and January with Doctor visits and  Rehab appointments. But Mom made time for quilting with her best friend, Ann. After all we were going for quality of life, doing things that bring us joy, bring Mom joy. 

Once the order came through for the motorized chair, we were all relieved! This would be with her till the end. It was customized to fit her body and her condition. It also had all the bells and whistles, Dad made sure of that. Even if he had to pay extra, his bride was worth it all. Dad still doted over Mom. Some days, I would go to my room and cry over it. I never had known this sweet side of my father. It was nothing short of breaking my heart and making me long for my husband. My heart was breaking because I knew how much they loved each other and that their life together would end. 

The MDA/ALS clinic were amazing and provided a motorized chair for Mom to use till her chair came in. She loved it! Of course, getting this chair involved moving more furniture, and rearranging the garage/craft/sewing room again. I felt I was in a constant state of moving boxes and totes and furniture! We also had to park the chair somewhere while she was sleeping. Poor Dad, he didn't know where anything was anymore. The house got rearranged at least once a month because of Mom's needs. It was almost like we just did it all on purpose to confuse him. 

April ended with Mom and Dad planning a trip. This was a bucket list trip. It was time to see old friends and family. It was time to say some goodbyes. 

The First Christmas with ALS

Midway through the month of November my brother and his wife experienced the birth of their first child. Mom was so very excited, she knew that this baby boy was a promise God had given to her. She dreamed about this baby, years before he was born. So when he arrived, she rejoiced! 

This is me in the picture, holding my nephew at the hospital.  He was such a sweet baby boy! Mom is looking on, since she already had her turn! 

Mom and Dad and baby Garrett at Thanksgiving!~ 

Thanksgiving came with mixed emotions for all of us. With all the joy surrounding the birth of Baby Garrett, sadness also came. Mom realized that she was not going to be around to watch him grow up. I found her crying one day, staring out the window, her mind off in the distance. I asked her what was she thinking about. She said through the tears, "I can't get on the floor and play with my grandson, soon I may not be able to hold him, feed him, or rock him to sleep. I waited so long for this baby, and now he won't know how much I love him, will he even remember me when I am gone?" 

Tears became waterfalls of pain and heartache. I grabbed the tissue box, crying myself, and just hugged her. I promised her that we would make sure Garrett remembered her. We would never stop talking about her and the love she had for her family! No one would forget her! She was to special for that! 

Emotionally Mom was back and forth with the thoughts of her mortality. Then a setback happened. Mom fell. She was using her walker and got her foot tangled and was flat out on the floor. She just couldn't get around much on her own. She started using the wheelchair more and more. It was obvious that her other leg was also giving out. Not communicating with the brain anymore. But we just got the diagnosis! This is just too soon! Off to the doctor we would be going. 

December arrived out of nowhere. My oh my, and we haven't even thought about Christmas! My birthday, Ashley's birthday! Ashley, my daughter turns 21 this year! Lunch was a must! Portland bound to meet up with my sister-in-law along with her sister, mother and grandmother! It was tradition to do lunch when one of us was having a birthday! Ashley and I chose the Cheesecake Factory! Yum! It was worth every penny! Great food, great service and best of all great company! Just the thing to brighten up Mom's spirit! Lunch with friends! 

Mom then got a wild hair and decided that she needed to do quilts for each grandchild. So we called one of her best friends, Ann, over to help out. Because I know NOTHING about quilting. At least at this point I didn't. First was the quilt for Garrett, nickname; Squirrel.  Quilting always cheered Mom up, and next to that was shopping; so off we went, shopping at the quilt shops! 

We found the perfect fabric! It had squirrels all over it !So I was making a quilt too. Mom wanted plaids, greens and browns.  Mom and I also picked out fabric for Amber's quilt and then David's. Ashley's and Daniel's colors were still undecided. 

Mom had Ann and I put together the quilt and then she was off doing what she does best! Quilting! 

Mom loved to embroider. She had two special sewing machines that do just that. Since my sis-n-law loved the Hummel Designs, she chose five of her favorites and that is what mom used in the quilt squares. Then she quilted squirrels and acorns around the edge and in the other blocks. It was perfect for  baby Garrett! And made with love! This was the last item that Mom quilted on. Her hands were starting to cramp. ALS was rearing it's ugly head again. 

The MDA has a special clinic for those with ALS. Mom became part of that program. She would meet with a team of doctors and other specialist that would keep track of her progress, or lack there of, and advise as to how to get the best out of her situation. It was amazing! We loved everyone there. Such great hearts in the men and women who met with us. Mom benefited from each visit. And they were able to use her case for the further study of ALS and its effects. 

The doctor appointments came none too soon: braces for the legs and rehab to keep what muscles she had left in them working. Our life was getting full of trips to Springfield and Eugene, Corvallis and Albany. So many different people to see. We tried to keep everything upbeat. Took advantage of our time out. Did a little lunch out or would stop at a quilt shop. Just to keep the mood on the brighter side. Because the appointments were nothing more than depressing. (only in the information of how far she had digressed)  She also started speech therapy. Swallowing was becoming an issue at dinnertime as mom started choking on her food more and more. Also a sign of the bulbar onset of ALS. We just couldn't get away of what was staring us in the face. It was attacking her all over, not just her legs. She even had a breathing test to see if, and how much of her lungs were effected. The results showed they had been. We had a tough couple of days after that one. 

Time to think about Christmas again; the girls decorated the tree and everyone passed around the baby! 

Christmas day was a good one. In fact the whole week was good. Mom was good. We laughed a lot and enjoyed the time with the whole family. 

The new year was full of appointments and surgeries for skin cancer. Mom was  to be a traveling woman! At the ALS Clinics they told us that she could plateau and live longer, she would just need the braces and other aids to help her out. We prayed for that to happen. Looking forward to 2012 we vowed to be positive and full of HOPE! Yes, attitude is everything and we were strong in heart, so we would prevail in spite of it all! Little did we know the road got narrower and darker and harder to travel.  

Understand ALS

Since we had never encountered this disease in our family or our circle of friends before, we had no idea what we were facing. Research had to be done. Our approach had to be positive. No room for negativity in our lives right now. 

ALS, Amyotrophic-lalteral-sclerosis, or Lou Gehrig's Disease; in a nutshell: was  nerves no longer regenerating nor communicating with the brain. Your body just stops working. Depending on the onset, one may live a long life, just aided with a caregiver and wheelchair, or more special equipment as one loses other motor functions. IE; speech  breathing, eating, going to the bathroom. The bulbar onset is the "other one" that no one wants. It brings a short life expectancy and possible complications. This is what Mom had. We didn't know it at first, but soon it was obvious. 

All in all, there is usually no pain. Mom didn't have any pain except for her bursitis. Possible depression, anxiety as one will most likely suffocate to death, because of the clasping of the diaphragm and lack of oxygen to the brain. Mucus problems as one loses the ability to swallow. Plus more. 

I don't mean to sound brash, but these are the facts. And as I held my Mother as she cried over what was becoming of her life, I had to suck it up and give a shoulder that could handle the tears and keep her going as long as possible. Keep going Mom, I wont give up on you! 

Here is a link to learn more about ALS: feel free to explore. 

http://als-mda.org/disease/amyotrophic-lateral-sclerosis/signs-and-symptoms

After the tears, we needed a plan. We are like that, always planning something. Mom wanted to go out laughing. She asked me to make sure of that. She wanted it to be peaceful and full of love and laughter. No problem, her and I laugh all the time. We laugh at each other and ourselves mostly. Ok Mom, I can do that, make you laugh. Bring joy to your darkening world. 

Now: first things first. Mom, (aka Lottie) was using a walker to get around. This was in September 2011. She just could not trust her leg. It was no longer communicating with her brain. So we needed to set into motion things that would give her a better quality of life. That's right QUALITY, not quantity. We were not guaranteed any quantity. So in October, my dad and brother built a ramp for her to use to get into the house and into the garage. And let me tell you, they are hefty ramps! 

The garage held the sewing room. Anyone who knew anything about my Mom, knew she could sew. She could paint, quilt, craft, crochet, knit, all of it. And she did it well. Life in the garage/sewing/craft room was fun. Good memories. She decided that she needed to make a few things before she couldn't make anything at all. 

In the photo, Mom and Amber are working on baby booties. She enjoyed sharing her skills with her granddaughters. 

We made Booties for a Boise State fan's baby girl and a fun Thanksgiving hanging. Mom was happy. Sewing made her happy. 

She was also still working at that time. She loved to go to work. It was getting harder to get around and carry items, then she put a "shelf" on her walker so that she could cart things around. (see, crafty!)  The people she worked with were family to her. She cried at the thought of having to say goodbye to them. Soon she would need to. It was just too exhausting on her to go in, even when the hours were cut back. But how could she leave "her people?" It was gonna be a sad day. And it was. Sad, that is. She resigned in November 2011. Bummer of a day, but it had to be done. Everyone knew it. That same month, I also resigned my position at work. It was obvious that she needed 24/7 care. She just needed that arm to lean on. She was not safe alone. 

Dad continued to work, since I was here for Mom, he was comfortable with that. I quickly received the tag name "Nurse Betty" and took my job to heart. Mom loved to cook and she was the "dutiful housewife." So when she could no longer stand in the kitchen and cook, I did. I admit I am not as "dutiful" but she was a hard act to follow. Again, she could cook or bake anything. She was my "go-to" whenever I had a question on how to make something. We needed to go over the recipes! That was a must. She was a wealth of information that I didn't ever think I would lose! She always fussed and worried over Dad. Her favorite question of the day, usually at breakfast; "What are we (meaning me) making Dad for dinner?" "I don't know Mom, what would you like me to fix?" She was still in charge of the kitchen, I was just the body in there doing what she asked. 

Since Mom was always an independent woman, I still took her everywhere with me. Shopping, Banking, Post Office. All the errands and then some, I took her. We started using the wheel chair more and more. I begin to gain a pair of muscles too! All that lifting, putting the chair in and out of the Jeep. We didn't have a handicap van, just their Jeep. Oh and getting her into the Jeep, that was funny too. I told her we needed a "butt lift." Car rides always started out with a laugh and thankfulness that we were not being filmed! She would pull and I would push, then she would slide into the seat, while I was pushing her at the same time. Too funny! Trust me! 

November went by fast, at her first doctor's appointment we discussed the reality of what she would be facing in the near future. Items we would need around the house to make life easier for Mom. Hand grips, shower chair, higher toilet seat with side bars, moving the furniture so she could get around in a safer manner. Simplify, simplify, simplify. Nothing lingering around the house to get caught up in her walker or wheel chair. Removing throw rugs was on the list too. No shoes left on the floor. Pick up everything! Keep the floors clean, it was surprising what she would get caught up on. 

I ended up rearranging the garage/sewing/craft room three times before it was a usable space for her. Workouts each time! Getting her set up to be able to sit comfortably with easy access to items she may need. She would sew and I was the gopher: I'd go for this and go for that as needed.  I ironed, while she stitched. We made a great team and enjoyed our time together. Chatting away like chickens in a hen house. Chitter chatter and so much laughter. This was a good transition, I thought. It is going to be OK. 

In the beginning..... with ALS

Hi, my name is Cathy, and welcome to my blog. I have recently lost my mother to ALS (amyotrophic lateral sclerosis, or Lou Gehrig's disease) It wasn't how it was suppose to happen, her dying this way. At least that is what we all thought. But it did. And this is my journey with my mother, who was also my best friend.  

When she was actually diagnosed, back on August 23, 2011, she asked that I move in with her. She needed me. And of course I did, move in that is. Before the diagnose she had had surgery for a "pinched nerve." Because for about a year her foot seemed to drop, then her leg just wouldn't move quite right. After many, (and I mean many) visits to the doctor, and after many mis-diagnoses, Mom and I decided  she needed another doctor and I was going to go with her on the visits. I journeyed (six hours) to my mom's so that I could go to the doctor with her. I am not quite. She needed that. She needed someone to stand up for her, and ask more questions and not be shut down, just because of her age. 

I had been noticing that her voice was also different. She seemed to make an effort to pronounce certain words. Almost as if she had had a stroke. But she didn't. I spoke up at the Doctor's office and he seemed to listen, now that more information was coming in. She was sent to get and MRI and a Cat-scan. Both came back with "no stroke" results. More visits to the Neurologist and then came the diagnose; Amyotrophic Lateral Sclerosis with a life expectancy of three to five years at best. 

Wow, Really, Are they sure?!!! Why not longer, what are they not telling us? I requested all her medical records, present and past. I started reading everything I could about ALS. None of it was good! And I was not happy. None of us were. My Dad, Mom, brother and I were all in shock. Our families and close friends were in shock too. Not mom! Not Lottie! That woman was in better shape than I was, this just can't be! But it was and we needed to deal with it straight on. No coping here, time was too short for that! 

My husband and I decided that being with mom was important, so I took medical leave at work, and moved in with my parents. Mom needed me. And I needed her. I wasn't ready to lose her yet! I had to be strong for her, she was scared. I was too.