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.

Catching up on life

I haven't written a blog for almost a year. I'm not sure why. Maybe it's being too busy. Maybe it's just that I'm facing some hard things right now. Whatever the reason, I shouldn't neglect getting feelings down on paper. Or screen. I do write in a journal every day so it's not like I'm not listing life's events. But it's cathartic to write for a blog, even if very few people see my words.

The year 2014 was remarkable for several reasons - two are named Wolfgang Winston and Astrid Josephine, our newest grand babies. The joy that our three little people, including my birthday grand baby Artemis Valborg, bring to our family is immeasurable! If I could do nothing but hold, rock, sing to, read to, play with and snuggle these three wee folks, I'd be content. I'm blessed to have WW in town (most of the time) so I get to see him a lot. I have way better upper body strength these days from hefting this guy around - 30 pounds at 8 months old!! But what a sweetheart. And I've been blessed to be able to fly to Phoenix pretty often (not as often as I'd like) to see the girls. Life is good and Heavenly Father has richly blessed our family with happy, healthy, adorable (I'm not partial) babies.

It was a crazy time at the end of May and through the month of June! Amy and Todd decided to move from my mom's small studio apartment to a bigger one in Provo, anticipating the birth of Wolfie. Another set of renters also decided to move. When I looked at the condition of both apartments I saw the daunting task of how much work needed to be done before they could be rented. I didn't have Riley to help as he was teaching his spring course away from town for six weeks. I really didn't have Amy, at least for a week or so, since she was giving birth and learning how to be a new mom! So I launched into the renovations myself and asked Tam Ah Sha (one of mom's new caregivers) to help rebuild many things in those apartments. He had a friend from Tahiti who helped, as well as his friend's wife. It would take too long to list what was done in both apartments but after 100 hours of my time and time from family and friends, they were ready to rent. I thought of my dad often as I worked on things he originally built. There were times I was completely exhausted, highly frustrated, in tears and in pain but I knew my dad would have been proud of me for doing the things he or Riley taught me to do or I figured out by myself. Brett and Kelly each flew in from out of state and did some of the things I wasn't comfortable doing - like plumbing and electricity. Brett and I used a jackhammer for the first time in our lives! We chipped out the cement floor of the shower we had to tear out. It was cathartic for me to use a hammer to rip out all the sheet rock in that thing but it was also tiring! I had to hire two men to rework the plumbing in the downstairs shower and then to tile it and the bathroom floor. My good friend Jera made and hung curtains, stained wood, painted walls and cleaned. Amy cleaned and hammered, finished trim and did other things, all with a week-old baby strapped in a carrier! Jan helped clean kitchen cupboards, drawers and doors. It was a huge much-needed effort and one I was trying to accomplish quickly so we wouldn't lose too much rent. They each rented easily by the first of July. Prayers were answered.

In June of 2014 I was hired as a freelance web writer and editor for Heritage School. It has been a joy to be a part of campus life where teens are getting help to change their lives for the better. My "other" son Ben Parker suggested me as a journalist/editor when they were looking to hire and it's been a great fit for all of us. I wrote all they asked me to and they continue to send projects my way including blog posts and bios to edit and writing articles about events. I can work in my jammies in the middle of the night if I want! But I love visiting campus and interviewing people there so I make sure I visit often.

Riley and I had a wonderful experience in Germany and Austria last summer. We flew to Munich and spent several days in the Bavaria region, climbing and picnicking in the Alps (after some pretty cool tram rides), seeing castles and lakes and eating delicious food. We ventured into Austria twice but traffic kept us from visiting Innsbruck so we just saw the back roads sites of mountains and lakes. We also visited Dachau, a concentration camp north of Munich. It's sobering and puzzling how evil people have power over others on this earth. Made me sad but the place has a beautiful spirit now as if all the evil has been driven away and the spirits of those who died there are exuding peace.

We drove north and stayed in Rothenburg for the night by sheer luck (and a quick, heartfelt prayer) since our room had been given away. In Europe it doesn't mean the same thing as in the U.S. when your itinerary says, "Guaranteed Late Arrival." Some sweet women helped us find a hotel near the one that shut us out. We missed the Night Watchman tour but wandered the quaint little village and climbed the wall the next morning. It's one of the last walled cities in Europe. We headed north to Schlitz and stayed with a colleague of Riley's - Peter and his wife Heida Zwick. It's always a pleasure to stay with locals in a foreign country. I love to see how people live, shop and what their houses are like. I also love to ask questions about holidays, traditions, favorite hobbies, etc. It makes it more meaningful to go a country when you can live, at least for a short time, with natives. Peter and Heida were wonderful, happy hosts.

We traveled the first week in a rental car on back roads and the Autobahn. I love the Autobahn! People actually respect others on this roadway. If you are slower than other drivers, you drive in the right lane. If you want to pass, you pass but quickly get back over to the right because a Ferrrari or Porsche might be bearing down on you at 180 km! I loved that driving is on the RIGHT side of the road, not the left - way better than England!!

We continued to Freiberg and visited the LDS temple. From the beginning we had asked various people for directions and info and they all spoke English well enough to tell us. When we got to Freiberg we couldn't easily find the temple. We pulled into a parking lot and asked a man if he knew where the Mormon kirsche (church) was, making steeple hand motions. He didn't speak English and tried to motion where to go, then motioned for us to follow him. We did and he drove us across town and pointed to the temple and the spire with Moroni on it. We waved and motioned a thank you to him. I wonder if this small interaction will spur him to wonder about that "kirsche" and why we were so determined to find it. Maybe we've been missionaries in a very small way. I hope so!

Our evening was to be spent in Dresden but we decided we had enough time to go into the Czech Republic. We crossed the border and stopped in a small town and got out for a few pictures.  Riley is never really nervous about anything but he didn't like being there so we left fairly quickly. So we can say we've been in the CR but we really only dipped a toenail in.

On the way back to Dresden we saw the Konigstein fortress and drove around to look at it. We didn't go in but made the decision to go there the next morning - it was not highly touted in travel materials (Rick Steve's book doesn't even list it) but it turned out to be one of our favorite places! We spent a good part of a day there, wandering the castle rooms and the outer edge of the wall and gardens. Riley water colored while I read a book. We sat on a grassy hill overlooking the river Elbe. We ate snacks and relaxed. In fact, we relaxed a lot on this trip. We've traveled a lot the past 15 years and we have generally packed each day with so many things to see and do that we are exhausted at the end of each day. This was a lovely trip because we chose not to do that. We skipped some things on our itinerary and spent longer time at others - a nice change from a hurried pace!

We ventured north to Berlin, making a brief solemn visit to the Berlin Wall, or remnants of the wall. There's a lot to see in Berlin but this was really all either of us wanted to see. There is something about seeing a structure that first embodied evil then, over time, switched to a symbol of perseverance and freedom. We each touched the wall to feel the cool cement and imagine the stories of those who died trying to cross it. It was a wonderful day in 1989 when the wall finally began to come down, reuniting family and friends who had been unjustly separated for many years. 

We stayed in a hotel in Berlin and ate at a Spanish restaurant next door. Another thing that is different about European restaurants as opposed to U.S. ones is there is no rush in a European (or South American or Tahitian or Taiwanese ...) restaurant. You "buy" your table for the evening. If you're in a hurry, tough luck. It took about three hours for us to order and finally eat a nice pan of paella.

Driving west to Potsdam we dropped our car off at the rental company then figured out how to take the tram to church. It was Sunday morning and we wanted to attend sacrament meeting. We made it just as the sacrament was finished but we could feel the spirit of this wonderful little branch. And they invited us to stay for a potluck lunch, which they have once a month and we lucked (or were blessed) into. No buying groceries on Sunday! We found our hotel across town and settled in for five days. It was a huge hotel but with tiny rooms, tiny beds and very little air. We did fine though. Riley attended his Dipterist Congress meetings and I wandered town with some of the wives and by myself. Jan Fisher (about 70 years old) and I logged about 17,000 steps one day on a trip around the town and parks. Riley joined me one day for a look at some palaces. While they are nice, we just aren't all that enthusiastic about palaces or the trappings! We'd rather wander trails and parks.

We had one more visit in Berlin near the end of our stay to the Natural History museum. Riley was excited to see the "Berlin Specimen" - the most famous fossil in the world. He took many pictures. We flew to Munich the next day and spent a night in a hotel near the airport, too far out and too costly to go into town to sightsee. We took a long walk and found a nice Italian restaurant and had a lovely dinner. We had eaten many kinds of food and I had said earlier I wanted to eat Italian food in Germany! It was the only restaurant around for miles! I love traveling, exploring and making new memories with my sweetheart.

I got home from Europe, lived at my mom's for a week while the caregivers were away, then packed and flew to Arizona, arriving just an hour after Astrid was born! I love spending time with my kids, helping when a new baby has arrived.

I'm glad we haven't let worries stop us from traveling. My mom has been in poor health for more than six years now. If we had thought she might die every time we were planning a trip and canceled plans, we would have missed out on so much! And I know she wouldn't have wanted us to miss seeing the world either. We had hired a seventh set of caregivers in May of 2014 and mom was settling in with them. They were from Tahiti - Tam and Tofea Ah Sha. Tofaea was pregnant and while we'd only had one other couple with a baby in mom's house, we hired them and they had a darling baby girl in June. They were happy, sweet, helpful and attentive. They had fun with mom and made her laugh. And Tam was a wonderful chef - it was always a bonus when anyone wandered in during a mealtime!

And since this is so long already, I'll write about November and December's events in a different blog post.  (And I should include some photos too!)

The one thing I have to maintain about life is that there is more good than bad. Heavenly Father is mindful of each of us and is helping us through even the most difficult trials. And I love that He is.