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.
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