The New Normal, Living with Alzheimer Disease

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Our journey is moving forward at a steady pace. Mom is doing okay and does her crosswords puzzles, criptiquotes, and word finds every day. Just a few months ago she could finish a hard puzzle in a matter of minutes. Now she struggles to finish one in several hours. She tells me how hard they are to do and I must be buying her the PhD level books. I’m not. Today, she has worked in her books for about 10 hours. I have to stop her so that she can eat lunch and dinner. She will be doing those puzzles until I tell her that it is time for bed, at 10:30 PM. Not much conversation today.

Mom doesn’t like to leave the house. I don’t push her but if I ask her to go with me and she says yes, we head straight out the door before she changes her mind. I took her and her best friend shopping for new outfits last week. They love having a younger chauffeur and Mom and Zona can be quite funny when together. While out and about, vigilance is important as she will wander away. I have to find items and give her two choices as she struggles with simple decisions and tasks. When we went to the dressing room, she needed help trying on the items. As we disrobed her to try the clothes I discovered that she had picked her skin on her torso and back. We (doctors included) knew she was picking at her nails, arms and legs but had no idea she was picking everywhere. Her arms, legs and body are covered in sores. The condition is known as Dermatillomania and is seen in the middle stages of Alzheimer Disease. No medicine seems to help her with this issue. The concern is that she will develop and infection and that would expedite her mental spiral. She will stop, at least for a little while, when reminded.

Mom picked a beautiful teal pants suit with a nice necklace and Zona picked a couple of items too. These outfits were for this past Sunday. Mom was going to be honored as Woman of the Year at her church and it was a surprise. We also shopped for hats as all the women were to wear hats for Crowns for Christ. We all bought fabulous hats. The shopping tired the friends out so they were pretty quiet on the way home. It was a good outing but mom doesn’t remember anything about the shopping trip and wondered where the clothes came from.

When we got to the church on Sunday, July 14th, Mom’s grandchildren, great grands, brother and cousins were there waiting. Mom got very excited that they were there but she still didn’t know that anything was up. During the service they talked about all she has done over the years for the church and community and then announced her name and asked her to come to the altar. She looked at me and asked, “Did you know about this?” I replied, “Why, yes I did,” with a huge smile on my face. Mom went up and received her plaque and a dozen variegated pink roses. They asked her if she wanted to say anything…… I held my breath as at this point in our journey we never know what she might say. Mom said, “I’m speechless,” with a big grin on her face. They took her picture and had the family come up for more pictures.

After the award, we were all invited to the fellowship hall for a large country food spread and some fellowship. Mom did well and everyone came by to talk with her and many told me how much they love her. It was a good event and mom was all smiles. When we went back to her house there were many visitors who came by to see her. The last visitors left around 6:30 PM, after Mom fell asleep in her chair. She was exhausted. It was a lovely day with a lot of smiles and hugs and kisses. Today, Mom doesn’t remember much about that day. That’s okay. All of us will help her remember (for a short while).

This week has been pretty quiet. Mom has been enjoying her puzzle books, ice cream and kettle chips, not necessarily in that order. Mom has adopted my cat, Scurry Murray, as her own and doesn’t want me to touch him. She has gone out with me a couple of times to run errands and we bought some lovely flowers. She loves flowers a lot but not as much as ice cream. I did her hair for her and she’s been getting her shower and wearing makeup everyday. Each day with her is a blessing and we try to fill her days with acceptance and love. She is a very special woman. She deserves better than this.

Mom and her birthday bracelet

I find this blog cathartic. Don’t know how often I will post but will as this journey progressives. This has been a good week, even with emotions being fluid as we try to come to grips with our new normal. Stay tuned for updates.

The Loss of Self, Alzheimer Disease in the Family – Volume 1

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Blogging about health is really hard to do. Looking back, this journey began about 18 months ago. My mother, Joyce, started repeating herself a little. Nothing concerning at all as she was 81 at that time. She began a downhill slope and by October 2018, she had trouble remembering how to use her cell phone and began more repetitive questions and statements. I had been taking her to her doctor all during this time but no diagnosis was made.

Later in October 2018, she phoned me and wanted to know when my son, Amos, was coming to get his car. She said he had left it in her yard and she wanted it gone. She was a little irritated about that car being there. Amos gave his older car to mom after her original car had been borrowed by a neighbor and totaled in an accident (not the friend’s fault). Mom went through the title transfer and getting new tags, etc in August. By October she didn’t remember any of this. It took me two days to be able to get to her house, 2.5 hours away and during that time she phoned multiple times about that darn car. I scheduled another appointment with her doctor.

The earliest appointment was two weeks away. During that time she improved quite a bit and her memory was improving. She went from “that car isn’t mine” to “you say it’s my car” to “oh, that’s my car out there.” She was having a good day when we went to the doctor appointment but he asked some questions, performed an exam, and then scheduled several tests, including an MRI. They got us in 10 days later for the tests. The test results were unremarkable, diagnosis was “mild atrophy and small vessel white matter ischemic change.” While the diagnosis doesn’t look to bad, it can’t convey the loss of self my mother was experiencing.

Things progressed okay after the October episode. Mom could live alone, she could still drive, but she was still experiencing memory loss. In January 2019, I scheduled another appointment with her doctor. I was leaving on an extended trip in February and I wanted to make sure she was okay to leave, with my son checking in on her and with my calling her basically everyday while gone. The doctor found no significant changes and I was cleared to travel. In May my Mom didn’t know where I was or who I was traveling with. She asked every time I called, she asked if we flew out (we were RVing).

Mother’s younger sister died of dementia and heart disease on June 2. This seemed to send her in a tail spin. She spiraled hard and fast. Mom couldn’t travel to Michigan for the funeral so Amos took his laptop and arranged a live feed of the funeral on June 2, so mom could “be there.” It went well. By June 10th, mom didn’t remember that her sister had died and was very distraught. The earliest flight that I could get from Rapid City, South Dakota was on June 12th. When I got to her house she was in a bad way mentally. I scheduled another doctor appointment and she scored a 14 out of 28 on a cognitive test. She thought is was August 2001. This was a significant decline. Her physician told her she could not drive nor live alone. She forcefully said, “I’m not AFRAID to live alone.” He told her it wasn’t about being afraid, it was about safety. The doctor’s office scheduled an appointment with a neurological specialist in Raleigh, NC. The appointment was for July 12th.

In the time we had before the neurology appointment, I was living with mom and making sure her medicine was taken correctly and that she ate regular meals, even when she said she wasn’t hungry. She’s never hungry now but she will eat if you put it in front of her. She thinks I’m a good cook so that is a plus. One day I was getting a shower and when I got out, the front door was open and she was gone. I called and called to her and was in a mild panic. I finally found her pulling weeds from a flower bed and she was laughing because she didn’t answer me on purpose. It’s just the way her mind works now. She also forgot she couldn’t drive and I found her in the car backing out of the carport. She had another set of keys that she found. She hopped out of the car and said, “I wasn’t going anywhere!” Yet, she was. The other set of keys is under lock and key now also.

With all that I’m sharing, I have to say that we have laughed a lot, hugged each other and told each other of our love. Precious memories. Oh, and then there is the ice cream (premium brands) and the kettle chips. She loves them and will hoard a whole pint of Talenti ice cream and not let me have any. She wants kettle chips for lunch. Nothing else. Kettle chips. I don’t fight those battles, she can have a nutritious meal the next time. It makes her happy. Especially when she doesn’t let me have any of that precious ice cream.

We went to Raleigh Neurology on July 12th and saw Dr. Kenneth Carnes. I really liked his knowledge and manner. He was excellent with mom and gave her cognitive test in a normal (kind of) discussion. She thought it was 2013 that day. Before we left he diagnosed her with early onset Alzheimer Disease. He prescribed Aricept (donepezil hydrochloride) for her. It’s for memory and she takes it at night. It does help her sleep but I’ve not seen any memory improvements but sleep is good. This is the stage that most people get diagnosed but according to the Alzheimer group, early onset is stage 4. It can last months or years. Mom is 83 and her disease seems to be going at a good clip. She can’t live alone or drive, forever now. She seems to be okay and working her puzzle books. She will do this for hours. She doesn’t like to converse much but she does sometimes. It’s difficult to watch this happen.

Right now we are all adjusting to the living arrangement changes and acceptance of our new life. Mom and I call it “our new normal.” There are many decisions being made about living arrangements and processes. It will all fall into place. I plan to make memories with my mom and love her with all my heart. There are several resources available for us.

I’ll follow up as situations change or come up. We are striving to make the best of this life. It’s the only one we have. More later.

In the Shadows of Mount Rushmore, Custer State Park and More. June 4-18

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We based our operations in Rapid City, South Dakota at the Shadows of Rushmore RV Park, $10/night with Coast to Coast. It was a nice resort and convenient to everything. While there we visited Mount Rushmore, where we met Nick Clifford, the last surviving sculptor of the monument.I bought his book and he autographed it. It was a nice visit and I understand that he recently celebrated his 98th birthday. We also visited Custer State Park, which I enjoyed enough that we went for a second day. The Badlands was also beautiful and breathtaking. Deadwood and Lead were also interesting places with so much western history. All in all this was a wonderful stop but it was cut short as I had to come home due to a family emergency on the 15th. More about that later.

I do recommend visiting this area. South Dakota is a beautiful state and the people are very friendly and inviting. There is a lot to see here. This blog is mostly pictures with descriptions. Please enjoy.

I flew out of Rapid City Regional Airport in South Dakota at 5 AM on June 15, headed to Raleigh Durham Airport (RDU) in North Carolina. The Rapid City Airport had two runways and seven gates. I flew a Delta small jet, capacity 50 people, to Minneapolis. I arrived in RDU around 8:30 PM and was so glad to see my son waiting for me. My mother’s condition had worsened so I had to cut my trip short. Travel is on hold for me for a bit and while it is, I’m going to blog about my family’s journey with Alzheimer Disease. I will be brutally honest, sharing insights, and I hope it helps someone. Please stay tuned.

The Battle of Greasy Grass or Little Bighorn…. Hardin, Montana June 2-4

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We did a stopover at the Crow Agency near Hardin, Montana. Our base of operations was  Grandview Campground , $42/night with Good Sam’s and is cash only. The plan was to visit the Little Big Horn National Monument and take a tour with Apsaalooke Tours to get the Native American point of view. We were not disappointed.

The Native American’s call the Battle of Little Bighorn the Battle of Greasy Grass because the grass in the area is so tall that it rubbed the bellies of their horses and caused a shimmer on the grasses. We went on a tour with the Apsaalooke Tours, run by the Crow Indians and includes visiting the Crow Reservation. We had three Crow guides and Ray and I were the only people on this particular tour. It was an excellent two hour tour and we learned so much. I highly recommend going and engaging with the guides to learn a more complete picture of this Battle. I also recommend reading Lakota Noon by Gregory F. Michno. He used recorded Native American accounts of the battle to form a timeline and give their perspective on what really happened that day. It’s a fascinating account and well worth the read.

After the Apsaalooke Tour we went to the visitor center/museum and watched the introductory film. It was interesting that the Park Service now indicate that the Native Americans were protecting their homes and their way of life. Afterwards we went on our own self-guided tour, which was also very informative. The Monument has changed over the years and brown markers have been laid to indicate where Native Americans fell in battle. These were added well after the white markers of the US Calvary. On the knoll we saw a number of white and brown markers and the marker for General George Armstrong Custer. One thing I noticed while touring was that visitors were quiet and reverent as this was a place of loss of life and the magnitude of what actually transpired here.

The battle was on June 25-26, 1876 between the US 7th Calvary, led by General George Armstrong Custer and the Lakota-Northern Cheyenne, and Arapaho tribes who were camped together at the Little Bighorn River, while hunting. The Native Americans were led by Crazy Horse in battle and Sitting Bull at the camp. Other tribal leaders were Gall, Red Horse, American Horse, Two Kettles, and Two Eagles. The Calvary led by Reno attacked the unsuspecting encampment, which was full of women and children, and the battle began. It didn’t go exactly like the Calvary expected. The tribes fought back fiercely to protect their families and homes.

Six women and four children were killed in Reno’s original attack. During the battle thirty one Native warriors died in combat or from wounds. The 7th Calvary lost sixteen officers and 242 troops, with one officer and fifty one wounded. The 7th Calvary lost 52% and suffered a massive defeat with Reno becoming the scapegoat after the battle. I encourage you to read credible sources as to what really happened. I promise that it will be an eyeopener for you.

I do encourage you to read more about this battle and the Indian Wars. Our history books painted a much different picture than what actually happened during this time. Live, learn, grow. Thanks for reading. Next up Rapid City, South Dakota, a beautiful and historic place.

Yeehaw! Cody, Wyoming… Buffalo Bill and the Nez Perce -May 30 – June 2

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New base of operations in Cody, Wyoming is the Absaroka Bay RV Park, $39 per night with Good Sam’s. This was a very nice park and centrally located for our day trips to the Chief Joseph Scenic Byway (also known as the Nez Perce Scenic Highway), tours of the town of Cody, and the Buffalo Bill Cody Center of the West Museum. This area is rich in history and a wonderful place to visit. To see the museum in full you need about 1 and 1/2 days. So much history and artifacts, you don’t want to miss it.

When we left Idaho Park, Idaho we decided to take one last trip through Yellowstone, yes with the RV. We left early and the scenery was spectacular. We said our goodbyes and headed for Cody, Wyoming. It was a great trip and we got to Cody early enough to make a trip out to check out the town. Pictures of our travels through Yellowstone.

We set up camp around 1 PM in Cody, Wyoming and headed into town to look around. Cody was founded on the Shoshone River in 1896 with the help of Colonel William Frederick (Buffalo Bill Cody). Cody is the county seat of Park County and has a population of about 10,000. Many of the original buildings are intact and still in use. We walked the streets and met a couple of real cowboys, with beer in hand. They were happy to give us some tips about the area and acted like our long lost friends. I truly enjoyed the town and the area.

We stopped by the Buffalo Bill Cody Center of the West, which has five different museums under one roof and is a world class center. Draper Natural History Museum, the Plains Indian Museum, the Cody Firearms Museum, the Whitney Western Art Museum and the Buffalo Bill Museum  make up the Center. I found it fascinating, but did not enjoy the Firearms exhibits because visitors were firing guns at stations and that unnerved me a bit. When we bought our tickets we worked out a deal to come back a day later to finish the museums as we planned to take the Chief Joseph Scenic Byway the next day and didn’t want to spend two consecutive days inside. The staff granted the the exception and were very easy to work with. Two thumbs up. I should also mention that the Center is a Smithsonian Affiliate.

The Chief Joseph Scenic Byway is also known as the Nez Perce Scenic Highway. It is the trail that Chief Joseph and his tribe followed trying to escape the US Calvary to a safe life in Canada. They were just a few miles short of the border when they were captured and forced on to a reservation. The trail is now Wyoming Highway 296 and is approximately 50 miles of beautiful territory. The beauty belies the desperation that the Nez Perce must have felt fleeing for their lives and their way of life.

I hope you have enjoyed the Cody Capers. Thanks for reading. Up Next: Rapid City, South Dakota. Mount Rushmore, Badlands, Lead, and more.

Too Much to See… Too Much to Do… Yellowstone Days 5-9 Part 5

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Day five was an errand day in Idaho Falls (Ammon), Idaho. I was to get two new tires put on the truck while Ray went to his eye appointment. We had a slow leak in one of the front tires and we were also having that checked. It simply couldn’t be a patched tire. We had cracked a rim on our off-road adventures. So two new tires and a new rim later, we were back on the road. $$$$$ to “Cap the stack,” as my mother says, they didn’t have any chrome rims to fit so we ended up with a charcoal colored one. Three chrome rims and one dark rim made for a stylish ride. We did order a matching chrome rim and had it delivered to Arkansas to be installed when we arrive there a few weeks later. We did see some pronghorns and elk on the errand adventure, which was great.

We spent the last few days exploring more areas in and around Yellowstone. It did not disappoint us. We started every morning around eight AM, packed a good lunch with snacks, and we would get back to the RV around nine PM. Glorious days and we were enjoying more and more sun. One of the days included going back out to Tower Falls Road, where we were blessed to see a Big Horn Sheep with her days old baby. I didn’t know the babies are gray but the are and they are adorable. We watched the two of them walk down the steep rock face, cross the road, and then disappear in the direction of the river below. The lamb did not miss a step on the steep slope. It was impressive! As with the other photos, we used a telephoto lense and stayed a good distance away.

We managed to see a Whistling Swan, Sandhills Cranes, another Moose on the loose, elk and bison. We also visited more geothermal sites and watched a few geysers. Everyone wants to see Old Faithful but there are many more great geysers to see, without the crowds of Old Faithful. All in all I rate Yellowstone National Park a 12 on a 1 to 10 scale. I will return again and again. It’s officially my favorite of the places we visited.

I really enjoyed Yellowstone and can’t wait to go back and share it with my family. It is a spellbinding place, full of wonder. Next up: Cody, Wyoming! Thanks for reading.

Over the River and Through the Woods, to the Grand Tetons We Go. Day 4 Part 4

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We started our day around eight AM. It was a beautiful but chilly morning. Eagles and pelicans were out at our campsite, which started the day wonderfully. We packed our lunch and headed out to Jackson Hole and The Grand Tetons National Park. The sights were beautiful and peaceful, making for a great day.

A little about Jackson Hole: It is named after a beaver trapper, David Edward (Davy) Jackson, who trapped there starting in 1820. He was the first European to stay an entire winter in the area. Although Native Americans hunted the area and used it for religious ceremonies, the valley wasn’t inhabited year round until 1870. The valley lies between the Teton Range and the Gros Ventre Range.

The Grand Teton National Park: It is 310,000 acres just 10 miles from Yellowstone National Park and is part of the Yellowstone Ecosystem. Paleo-Indians hunted in the area 11,000 years ago and were the first known humans in the area. The Grand Teton mountain is 13,775 feet in altitude and rises 7,000 feet above Jackson Hole. The Grand Tetons are the youngest mountain range in the Rocky Mountains, 6 to 9 million years old and were formed by earthquakes on the Teton Fault and continues to shift due to an active fault block. This area is absolutely beautiful.

What a beautiful day. Next up: Day 5-8. Back in Yellowstone and the Henry Lake area. Thanks for reading!

Cubs and Calves and Stampedes, Oh, My…. Yellowstone Day 3 Part 3

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We left very early for the Tower Falls area of Yellowstone National Park on the 3rd day. We had packed a lunch, as usual, and planned to stay until early evening. This was a spectacular day for wildlife viewing. Two grizzlies, five black bears, pronghorns, elk, and stampeding bison and calves. We also saw some outstanding geothermal features and enjoyed the Mammoth Hot Springs area. It was a wondrous day!

What a fantastic Day 3 in Yellowstone. So much to see! Stay tuned for Day 4 – Jackson Hole and The Grand Tetons. Lovely!

It’s Baby Season in the Park…. Geothermal Features…. Yellowstone Day 2 – Part 2

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Day two in Yellowstone National Park took us on a route down Firehole Canyon Road, alongside the Firehole River and Falls. It was early in the morning and we were in for a big surprise. Down on a little peninsula in the Firehole River was an Elk who had just given birth to a beautiful calf. We parked and slowly exited the vehicle and sat quietly on a rock on the ledge above the river. We watched as the calf got up and nursed for the first time. It was a surreal and spiritual experience, a sacred part of nature. Please note that we used a telephoto lense and were well spaced away from the event out of respect for nature.

Once we could tear ourselves away from the miracle of birth, we completed the trek down Firehole Canyon Road. We stumbled upon a coyote hunting rodents in the meadow, bison, and many geothermal features, including geysers. We also saw Old Faithful and while it is a big attraction at Yellowstone, there are many other geysers that are more impressive and have fewer tourists vying for a good spot. I love exploring!

How in the world can one have a better day than day two at Yellowstone? Well, day three was bear day… Grizzlies and black bears. One with her yearling triplets. Stay tuned. It’s awesome! I love Yellowstone!

Bison & Pronghorns & Bears…. Oh, My! Yellowstone May 18-30th

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We made one stop at Deer Lodge, Montana, Indian Creek Campground at $31.34/night, to break up the distance to Island Park, Idaho. We broke camp early on the 19th and headed to Jared’s Wild Rose Ranch, $45.46/night with Good Sam’s, just 20 minutes from Yellowstone National Park and on Henry Lake. What a beautiful place. The park had full hookups but the spaces were very small. That didn’t matter when you saw the view of the lake and the Mountains. We also had eagles visit us right at our campsite each day. I would definitely stay there again. The staff was also very accommodating and while we didn’t fish, the fishermen (and women) were making many big catches of trout.

We spent several days in Yellowstone and made day trips to the Grand Tetons and Jackson Hole. Everything was so picturesque and being spring, the wildlife was in full bloom too. Calves, cubs, fawns, etc. You name it, we saw it. All this means is that the Yellowstone blog will be broken in to several parts. This is Day One – Part One… I must have taken a thousand or so photos. If you are interested in avoiding crowds and seeing a lot of wildlife, I recommend going early in the morning or staying later in the evening. It will make for an amazing visit. We did a little of both and slept well at the end of the day. Please respect the wildlife and stay a respectable distance away and please do not feed them. It causes many of the bears,etc to become dangerous and they sometimes are removed but sometimes they are destroyed. RESPECT! A bison can weigh up to 2,000 pounds and can run up to 40 miles per hour. Watch for their warning signs and do not get too close. It will keep you safe.

Yellowstone National Park is the first national park in the USA, founded by President Ulysses S Grant on March 1, 1872. It is known for it’s abundant wildlife and it’s geothermal features. It is a hotbed of volcanic activity and is absolutely beautiful. Ancestral Native Americans inhabited the area about 11,000 years ago. The Park is 2,219,789 acres, with 96% in the state of Wyoming, 3% in Montana and 1% in Idaho. The Yellowstone Caldera is known as a “supervolcano” and the largest volcanic system in the USA. It is expected to erupt sometime in the future, which would have devastating effects on the world. Something to look forward to?

The first day we took the route to Madison, Norris, and Canyon Village from the West entrance. It was beautiful. Some of the roads were closed due to late snows but those roads opened in a couple of days. The best way to experience our trip is through pictures, although the pictures cannot capture the beauty. Yellowstone is my very favorite of the national parks that we visited. I want to go again and again. I will!