My mom's life changed dramatically

My mom's health started going downhill in 2008 when she was 79. In the fall of that year she said she wasn't going to drive anymore. She was worried her eyesight was failing and she didn't want to hurt anyone. I started taking her practically everywhere she needed to go - stores, doctors, funerals, weddings, etc. She felt sad to lose this independence but we knew she had made a wise decision. She kept saying she didn't want to be a burden. I told her I loved being with her and she would never be a burden.

At the time, I reassured her I was fine taking her where she needed to go. And I was. I did have to work around my job, my callings, my family's needs, etc. but I loved being with my mom. We've always had a wonderful relationship and friendship and it was a pleasure to be with her. She was always worried she'd be a burden to me.

The year 2009 was difficult. She had horrible back pain from osteoporosis, arthritis and degenerative disk disease which necessitated many doctor and hospital visits for epidurals. She gradually became less happy and more tearful. By August of 2009 she had a new problem - horrible headaches. I remember one day she called me at work 14 times. I couldn't answer because I doing orientation with new journalism students. When I finally called her she said her head hurt so bad. We worked with her doctor to give her better pain meds but by the end of the month, she wasn't better, she was worse. An MRI was ordered and she was found to have had a brain bleed or a small stroke. That news changed her life and ours.

Mom spent more than three months in a rehab center. It was excruciating for her and us. I thought she was going to die. I worked with her doctor to get her pain controlled and with her PTs to get her moving again. She needed hearing aids. She didn't want to go anywhere except in a wheelchair. She was angry and mean to me, something I had never experienced. It made me cry. After many prayers, priesthood blessings, hours of coercion and pushing to exercise and try, she rallied. By mid-November she was nearly her old, wonderful self again. But she couldn't live alone. It would take pages to write about clearing out space in her house, moving items from the "caretakers' apartment" (my brothers' old bedroom) to store in other areas, posting ads, interviewing and eventually hiring caretakers. I had to decide how much to pay, what care was involved, what was expected of the caregivers, what we were expected to do for mom and to provide for them. So many details! Over the course of the next five years mom had seven sets of caregivers. Some were better than others. All were good to mom, for the most part. It was hard for her to have strangers living in her home, telling her what to do and what not to do. I was on the other end, hearing their frustrations, hearing mom's frustrations, getting criticism and questions from others. And also getting a lot of love and support from wonderful family and friends. I had my own priesthood blessings when I was in such despair I didn't think I could go on. Heavenly Father has blessed me richly for caring for my mom and I am truly indebted to him.

There were good times and bad times during those years - mostly good, which we were all grateful for. Mom was still funny, happy, giving, willing, agreeable and could do many things for herself. She had not lost the ability to feed herself or use the bathroom without help. She did need help showering and she even made it fun, singing in the shower with a caregiver or making animal noises. My mom - always the joker, made it more fun, probably because she might have been a bit embarrassed to be naked in front of someone else. Make jokes, lighten the mood. She gradually adapted to having others care for her. So much so sometimes that she lost the ability to do things herself, like buttoning her own buttons. We had arguments about things like that. She'd complain that they wouldn't do her buttons. I'd tell her that I told them not to, that they should make you do it. She'd get mad and ask why. I'd tell her, "so you don't lose the ability to." She'd try for a time then give up and they'd do things for her that she should have done.

During this time, mom was losing her eyesight. She'd always had wonderful eyesight. She was the one who could see the billboard miles away when we were playing "Alphabet" on the drive between Pinedale, Wyoming and home. I took her to an eye clinic the summer of 2011. Doctors treated her for glaucoma, removed cataracts and prescribed drops for her eyes. I remember the first time she had to have a shot in her eye. She was scared and it hurt. We hugged and cried when we got to the car. It was a difficult experience and I was parenting my parent - comforting my mom in a moment of distress. It became one of so many. She got many shots over the years. At one point, when she basically couldn't read any letters in the field vision test, she asked the doctor why she should continue coming to him if she couldn't see. He really didn't have an answer. Yet he wouldn't declare her legally blind for tax purposes and even said she had enough vision to pass a driving test. Idiot.

Mom was losing words. When she couldn't come up with a word she'd laugh and fill in with another. It was funny. But it bothered her.

Each set of caregivers handled a different odd issue. One was the lawns. Mom wanted her lawns to be green and pestered one woman caregiver to the point that the water bill was $300 for one month. I told the caregivers how much to water and when and that I didn't care if the lawns stayed solid green. And I explained it to mom - she was being demanding about something that just didn't matter and it was alienating her caregiver. Another time mom was upset that her light bulbs weren't bright enough. The caregivers bought and changed out all the downstairs light bulbs several times. She wasn't satisfied. I had to explain that the bulbs were bright enough but that her eyesight was dimming. A sad situation to face.

One time she decided her box springs were hurting her back. She had a new, deep mattress on top of old box springs. I told her there wasn't a way to feel what the box springs felt like. She argued and argued and yelled, "I'm worth more than a set of box springs!" I bought new box springs.

Mom called one day and said she had no wash cloths in the house, that the caregivers had just cut up old bath towels into wash cloths. I bought some new ones on the way over, then pulled out every wash cloth in the house. There were at least 40. She said they were old and scratchy. I told her to feel them and see which ones were ok. She fingered all 40. All 40 were ok. Still kept the new ones.

There were arguments about sandals and orthotics, the flavor of yogurt, going to the dentist (she thought you only needed to go when you had a problem ...), the flavor of Gatorade, Gatorade powder (cheaper) as opposed to already bottled.

It got harder to move her around. She couldn't see and wasn't steady on her feet. I sometimes had to make several trips from car to house or car to Shauna's salon or wherever to get her and everything in. She apologized for being a burden. I reassured her she wasn't.

As I look back at the episodes with wash cloths and light bulbs and forgetting words I see now the beginning of dementia. I just didn't know about this disease or symptoms of a disease.

By mid-November the last wonderful set of caregivers were exhausted. They were getting up many times in the night. Mom couldn't see to use the bathroom and couldn't see if she had mess on her hands. She would smear it on clothing, counters, her walker, etc. She went from being constipated to having diarrhea. She asked the same questions over and over. We admonished them to be patient, that she was old. But wow, it was hard. Looking back I admire how long they hung in there. And Tam and Tofaea were still having fun with her. I'd sneak in the door and hear their conversations, still with laughter, still with love. But getting up 5-10 times at night, especially with an infant, wore on them. And the messes wore on them. They told me they were going to quit at the end of December. They agreed to stay so mom could have Christmas one more time in her home.

A few years back I had seen a new care center being built on 900 East in Provo. I'd passed it many times. I even made an appointment for a tour back when it was opening but the appointment fell through. I mentioned this place to my sister. She stopped and took a tour and was very impressed so I went the next day. It was everything we wanted for mom. It cost more than other places further south but I didn't want to drive south and my sister didn't want to drive north to Orem. So this seemed like a logical place - right in between the two of us. I worked with Owen Snead, the director, to get things rolling with the plan to have mom enter on Dec. 29th. Many forms to fill out, financial matters to go over, doctors forms to get, meds to switch from one pharmacy to the house one, a new nurse and CNAs to bring up to speed. It was stressful and exhausting.

We felt we were divinely led to Our House, the care center we chose. There were also some quirky things like Owen Snead buying my mom's friend Lorna Condie's house in Springville. Mom's next-door neighbor Paris was at the center when I first went - her mom had just died. She had lived there several years. Paris donated her mother's furniture to us for mom to use. And ironically, mom ended up in Paris' mom's room. A woman named Ema lived there - she was my employee at Canyon Crest. Another friend, Patty Sanderson, was secretary at Canyon Crest when Ema and I worked there. Patty and her husband coordinate the Sunday services for residents.

Plans changed the week of Dec. 16 when it became necessary for mom to go to the care center sooner than planned. I was in Phoenix but spent time on the phone making arrangements and figuring things out long distance. I arrived home on the 18th and stayed with mom that day and night. Jan came after work and we told mom about the need to go live in a care center. We thought mom would fight it but Jan did a beautiful job of leading up to why it was necessary and mom bought into it. We were astonished and thankful.

The date for mom to move in was Dec. 19, the next day. Working from a list from the care center I pulled items from all over mom's house to label and pack. My dear friend Jera Parker came as did Amy and Wolf. Melanie came and sat with mom while we worked to get things labeled and organized. There was a wonderful, happy spirit of togetherness in the house. It felt good. I know we were being blessed, guided and comforted that day as we made preparations to make the biggest change of my mom's life. Jera ran to WalMart for needed items and bought lunch for all of us. Tam and Tofaea packed and moved some of their things. Mom happily held baby June and baby Wolf. She was pampered all day by all of us.

Riley and Paul Ashton came for the big items - the dresser from Paris, mom's bed, big chair, nightstand and other heavy items. They loaded them on Paul's trailer and hauled it all into mom's room - #53. Jera and I followed in our cars with mom and the rest of her things. Mom was calm and seemingly happy. She'd taught us all her life to be a good actress. I think she was doing just that.

It felt a little strange to decide what mom would need at the care center. This wasn't just a visit. This was where she would probably spend the rest of her life. She had spent 53 years in her home on 200 South and now we were deciding what small accumulation of things would make up the last days, weeks or months of her life. Many of the things we took were for us - pictures of family, a pink flamingo, a cookie jar. I knew she couldn't see any of it but they would, at least, be conversation starters for visitors, and would make us feel at home. We took her favorite clothes and blankets, her hot pad, used every day, all day, lamps, her exercise pedals, Mr. Saver (oxygen), and other items.

For several hours we unpacked and placed things around the room. We started learning the routine of Our House. We'd learn later that the staff was short handed - it was Christmas and staff were gone. Since we had to rush getting mom admitted there were no medical orders. I wrote many notes explaining how to take care of her and posted them everywhere. Mom was calm that day so I thought we were off to a good start. Not so.

I was exhausted and didn't get down to see mom as quickly as I had wanted to on Saturday the 20th. I called Amy and asked if she would go check on "Gma" since Amy lives just four blocks away, which is a huge blessing! She called me in tears a bit later and asked me to please hurry, gramma was very upset. I drove quickly and saw my mom in a state I've never seen her in - agitated, angry, flailing, yelling - for a solid two hours. She wailed:

~I can't believe you'd do this to me.
~I can't live here; I want to go home right now.
~I'll never forgive you for this.
~How would you feel if someone did this to you?
~You've taken away my life, you've thrown me out of my home.
~I'm in the middle of nowhere; no one knows where I am.
~I might as well be dead.

David and Jera Parker had come to visit and I shooed them out. I was in tears. Then I called them and asked them to find Riley so he and Dave could give mom a blessing. They did a while later and she seemed to calm down. But for the next four weeks it was a roller coaster of those emotions and those statements along with her genuine love for us and a willingness to try. Dementia and Sundowners affect the mind - they bring clouds and curtains of sadness, confusion, doubt and anger. There are times when mom is a babbling, incoherent mess. When we are lucky our old mom comes out to play. We've had ups and downs within minutes and within the course of a day. We've had the good, happy mom for several days in a row. There is no rhyme or reason. We never know which mom we will get. But we love her no matter what.

Mom has learned a new normal. She has dug her heels in at times, saying "I can't ..." but she has learned. She can use the call button she wears to call an aide. She will exercise with her pedals. She now drinks more - a huge help to having cognitive ability. And she loves to sing! We've sung many old-time songs and she now entertains people in the dining room with her songs. She is now the darling of Our House, as we knew she would be. She can't see her new friends and doesn't know their names. But she is grateful - she tells me she makes sure she tells people "thank you" for helping her.

My sister and I see her nearly every day. Sometimes mom doesn't remember we were there and asks why we never come. I guess we could skip going since she doesn't remember but I go because it makes her happy in the moment. And it gives me comfort that my mom is still here, whichever version of mom that is.

It's been eight weeks since mom went to live at Our House. I visit our house, the house in Springville I grew up in and I have to push away the sadness as I wander the rooms. I know we will dismantle that house, the trinkets and memories, probably soon. We cannot pay the bills of her new life without selling the home of her old. That hurts my heart. I don't have memories of another home with my parents and siblings. While I lived away from Utah for 11 years of my 54 on earth, that house is where we came home to for visits. Opening the front door, from the days of my youth to my adult years, I always knew my mom would be there, waiting with a hug and a smile and a welcome home. I know Heavenly Father has a plan for my mom and wherever she lives, I will visit and I will love her.