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Vacationing – Alzheimer’s in the Family

Thursday was a good day. Mom got her hair done and had a full afternoon visit with Liz and Aunt Helen. It was a tearful but happy reunion. Mom was having a good day and was interacting, which was awesome. She ate ice cream for dinner.

Mom was tired and grumpy on Friday and I believe she was simply tired from all the Thursday activity. Glenda and Eugene came for a visit and they brought a great lunch with lots of fresh veggies and chicken. Mom ate a little and liked the food. She is eating about 475 to 700 calories a day. Not enough.

Saturday morning we left early to drive to Sapphire, NC for a vacation with our family. Mom was alert for the whole almost 6 hour drive. She is fixated on “tin roofs” on houses and redbugs (chiggars) when we drive through wooded areas. She’s had these fixations for about 2 months and talks about this at length, over and over and almost verbatim. I find it interesting. Deja vu, all over again!

It is great to be with my children and my grands. Mom has been very alert and talkative. Sunday was an interesting day. The kids went out for a hike to Turtle Falls. Mom and I stayed at the house. Mom was tired and complained about feeling funny. Her BP and pulse were all over the place. BP 161/79 with pulse of 57 to 88/62 with pulse of 145. She’s still wearing the heart monitor. The doctor thinks it may be A-Fib but it could be as simple as not eating enough to support her body functions. At this stage if it’s A-Fib why would one agree to implant a pacemaker? Feeding tube? What is wrong with letting nature take its course? NOTHING!

This brings us to today, Monday in the mountains. Temperature of 65 and beautiful sitting in the rockers on the porch. Mom got up, took her sink bath (she’s afraid of the shower and tub), dressed and she’s had her yogurt. She’s been asleep on the sofa ever since she had her breakfast. All this socialization has simply worn her out.

We go back home on Wednesday and I get to see her doctor on Thursday, without her. We have to sign some “end of life” directives. I don’t know how long we will have my mom but I do know she is and will be well loved.

More later.

Why Am I Losing So Much Weight? Alzheimer’s in the Family

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We came back to Mom’s house yesterday after I finished with my appointments in Myrtle Beach. She had insisted on coming back the day before. We weighed mom yesterday and she had lost 3.6 pounds since last Tuesday.

She asked how can she lose so much weight since she was eating so much food. I explained to her that 500 to 700 calories a day really wasn’t eating a lot of food. She had an incredulous look on her face during that conversation. She has lost 22.6 pounds since June 1st.

After my last appointment yesterday, I loaded the car to come back to Mom’s. We had a “catastrophe” as we couldn’t find her purse. She told me it was in her suitcase so I went to the car and searched her suitcase to no avail. When I came back in the house she and Ilona were looking everywhere. Mom was in a panic, even though her ID and other important cards are in my purse as she takes them out often, along with her cash, to make sure she has them. She does it everywhere and it simply isn’t safe. She counts her money over and over because she can’t remember how much she has.

While she was Rollatoring around, I had an epiphany and lifted the seat to the device and there was her purse. Her face became a sunbeam with a large smile.

We had an uneventful trip home and today has been pretty good. I bought a few mini Baby Ruth bars and she will eat them. 50 calories at a time. Yay! Today she has eaten a little less than 700 calories and she’s been more alert but very confused. She was visited by her pastor, Corky, today and it was a good interchange.

She is facing her mortality head on and is sad about “leaving us.” She sits in “her chair ” all day and reads the paper over and over and works her word finds and puzzles. She seems content even though there is little interaction with us. Seems to me that she is just passing time until everything aligns and she can leave.

I have an appointment with her PCP next Thursday to talk and initiate end of life protocols. I’m at peace because we’re doing what is best for my wonderful mom. It is sad that this is happening to her and us but, you know, there are worse things in life.

I’m glad that I can be here for her. It is an honor to honor her during this transition. Please keep her in you thoughts and prayer, however you believe. We appreciate all of you.

More later. Thanks for reading.

Where is the Silverware- Alzheimer’s in the Family

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Today has been a pretty good day. Got to appointments and got several chores done. Mom ate about 750 calories today.

The highlight was that 2 hours after eating 100 calories for lunch, she decided she wanted ice cream. She got up and took the Rollator to the kitchen and fumbled around. I asked “What are you doing?” She replied she was getting ice cream. She just couldn’t remember where the bowls and spoons were. I guided her and she found the bowls and spoons but she couldn’t find the ice cream in the refrigerator. I guided her to the freezer and it was a eureka moment. She laughed.

I was giving her independence and just watching over her. She got a little ice cream and then proceeded to put the spoon back in the silverware drawer. She enjoyed the treat and I washed all the affected silverware. No biggie.

Today was a good day. She almost fell once even with the Rollator. It was scary. She has been a little more alert today but in a world of her own. Each day is a blessing. I don’t know how many we have. We just make the best of things.

More later.

Not Acute-Alzheimer’s in the Family

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Mom is alert today but still not moving from the sofa. I don’t think the Donepezil was responsible for the lack of appetite. She ate 1/2 cup of yogurt for breakfast and was full. For lunch she ate 5 small bites of chicken, 4 small bites of broccoli, and 3 small bites of cantaloupe. She simply isn’t hungry and says she feels full all the time.

We got a report on the MRI today saying there are no acute processes. While this is good it simply means that there was no new issue such as a stroke to cause her rapid decline. The neurologist will discuss the changes due to Alzheimer’s on our next visit.

They think her issues are wholly related to Alzheimer’s but to be sure we will be getting a chest and abdomen scan in the near future.

Things to be thankful for: mom thanked me for all I do for her and told me she loved me today. She is more alert today and not sleeping much. She seems to like being here and hasn’t asked to go home and she hasn’t talked about leaving me today.

She still is trying to fiddle with her monitor. Last night, at bedtime, she removed it and put it back on unassisted. The monitor started screaming as she had not really put it back on. I thanked her for helping me with it and got everything straightened out. She seemed pleased with herself and at least mom hasn’t taken the monitor apart yet. It’s a good thing.

Every day is different and has a new challenge. I’m looking into getting a ramp for her door as she tries to take the Rollator down the steps. We’re also trying to get a quote on a bathroom update to make her home safe for her. It’s hard to get anything done in that rural area and I wish we didn’t have to wait so long for good help. It will eventually come together and while I’m patient with mom, I’m not patient about things that concern her safety.

This is our New Normal. We start each day with no expectations and just take it as it is. More later.

It’s a Roller Coaster-Alzheimer’s in the Family

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I brought mom back to the beach with me. I still have to manage my life while being mom’s full time caregiver. She likes it at my house because it’s quiet and designed to make it easy for her to get around.

The neurologist took her off the Donepezil on Tuesday. By Thursday she was more alert and actually eating a little more. Today she has eaten about 600 calories and keeps telling me she’s doing better. She is in some aspects but she’s still not eating enough and still has no energy. She likes to sit and nap and do her puzzles.

She is talking a little more but she is fixated on tin roofs, Trump (no more news in this house), and not being a burden. The only time she has left the sofa is to go to the bathroom. Today she knows it’s 2019. It’s a good thing.

Last night my friend, Ilona, kept mom for me to visit with my friend, Ray. Today another friend stayed so that I could treat myself to a mani-pedi. It was nice having time. It’s important. I feel more rested, which is good.

Worth noting: power bars and Ensure are a Godsend; patience is vital; and Alzheimer’s is a crappy disease.

I’m thankful for a couple of days of mom feeling better. That she knows who I am and she isn’t fighting with me when I’m trying to help her.

Now, if she’ll just not remove the heart monitor. That would be good.

More later.

Homesick-Alzheimer’s in the Family

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It’s Wednesday, August 7th. I slept 9.5 hours and woke up exhausted. I got mom out of bed at 10AM. She is so weak today. Her best friend, Zona, stopped by with a coke and sausage biscuit and stayed for a visit. Mom ate 1/3 of the biscuit and was full.

We went back to the neurologist yesterday to address her downward spiral. I liked the associate that we saw. Seemed very competent. They took mom off the Donepezil and talked about how people with Alzheimer’s didn’t get better and the limited things that they can do for her. I told her that I understood all that but we needed help. She was just making sure that I understood the situation.

The doctor also told me to get help in taking care of mom as she didn’t want my heath to decline faster than mom’s. She talked to me about the toll caregiving takes on a person and for me to take care of myself. She was passionate about it. I know she’s right.

Mom has lost 19 pounds since the first week of June. It’s a 12% loss of weight. Over 5% loss is considered failure to thrive. The doctor ordered more test, the first being an MRI this afternoon. They are trying to determine if she has some other issue/s or if the brain damage due to the Alzheimer’s has affected the part of the brain that tells the body to process and use nutrients.

Yesterday mom told me that she was homesick. She was home, sitting in her favorite chair. So, now I’m thinking was she speaking of her heavenly home. I don’t know. She talks so much about “leaving here” and dying. Everyday. Yesterday she told the doctor that she was sad about leaving her family.

I have mom washed and dressed for her appointment and it’s 1 PM. She’ll rest until we leave at 3ish for her 4:30 PM MRI. Hopefully, they can determine what is going on. Next up is a chest and abdomen scan to rule out other disease. They tell me if she is in the failure to thrive stage, there isn’t much if anything that can be done and her time is short.

I don’t know how or what to feel. We get up each day and go forward and do what we can. Please keep us in your thoughts and prayers.

More later.

Ice Cream for Breakfast- Alzheimer’s in the Family

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Mom has really been feeling poorly the last few days. I did manage to get her bathed and dressed today. First day out of three that she hasn’t stayed in pajamas. She is still not eating much, no matter what I try to feed her. We settled on two scoops of ice cream for breakfast today so that she could take her pills.

Each time I give her the meds she asks,”What’s all this? I only have one prescription.” She has been on 10 prescriptions for years. Pills morning and at bedtime. She resists.

She is still wearing the heart monitor and has not taken it apart yet. She’s confused about wearing it but mostly forgets about it unless she touches or sees it.

Mom has been in her chair for the last three days and only gets up to go to the bathroom a couple/three times a day. She takes her small meals in her chair too and moves from there to her bed at bedtime. She is so weak that she talks and cries (at times) in a whisper. I have been unsuccessful in getting her out of the house for anything except doctor appointments. She simply refuses.

Her blood work all came back normal. The results of the urinalysis just came back negative so there is no infection. Her rapid decline is most likely the Alzheimer Disease. We won’t have the results from the monitor for about 25 days but I know in my heart it isn’t her heart that’s causing the new issues.

Mom is still cursing, something that she hasn’t done in her previous life. She snaps at me a lot out of anger. I know it isn’t me, it’s her disease. She is weak and helpless, which is hard to witness. Each passing day reinforces what I already know. I will not be able to care for her at home much longer. I dread that for her but her safety takes precedence over staying in her house.

Her friends don’t understand why she just can’t go out to eat and shopping with them. They only see snapshots of her life when they stop to visit. They don’t know she isn’t following conversations because she can’t, or that she isn’t talking because she doesn’t understand what they are talking about. They seem to think that all I need to do is force her to eat, force her to go out, etc. All is can say is, “This isn’t how any of this works.”

We have an appointment with her neurologist tomorrow, in hopes of a new medication that may help her appetite. I think they will be surprised at her rate of decline since her last appointment on 7/13. We’ll see what they can do to help her.

Today we are making lemonade out of lemons.

More later.

Scrambled Days – Sleepless Nights- Alzheimer’s in the Family

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This has been a week of adventure. My cousin, Glenda, came to care for mom on Tuesday. I had doctor appointments in Myrtle Beach. She stayed over night, allowing me to have a break for the first time in 2 months.

All went well and I came back to mom’s a little more rested. Being a caregiver to a loved one is hard. I’m showing more patience than I ever thought I could have. Caregivers have to be “on” 24 hours a day, 7 days a week. I sleep with one eye/ear open just in case mom decides to wander during the night. Showers are quick because things happen when the caregiver is out of sight.

I took mom to her PCP on Wednesday for a recheck. Something is going on with her heart. May be A-Fib. They ran an EKG, bloodwork and urinalysis to rule out infections, thyroid, etc. We have to cover all the bases. They ordered a Rollator walker and a cardiac monitor. Mom’s BP and pulse are all over the place, low to high so she’s been weak and dizzy. She is a fall risk. She kept telling the doctor,”I’m just wore out. All wore out.” She keeps talking about “going out of here.” When pressed she says she knows she is dying. I always respond,”Not today, mom, not today.”

My daughter, Jeremi, and my two young granddaughters came for a visit on Thursday. Mom was having the best day in about 12 days. She interacted with the Greats and stayed awake for the visit. She ate better and served everyone ice cream in a cone. Wow! I used this time to pickup her walker. She was too agitated to do that after her appointment on Wednesday. Mom told me that she felt better because she got two shots at the doctor. She did not.

I took mom in for her heart monitor on Friday at 8:30 AM. She asked me several dozen times where we were going and why. I answered patiently each time. Mom has lost her filter and I have now heard her curse for the first time. She is also saying many inappropriate things that she would never say before. We go with the flow. At this appointment she had trouble walking a few feet with the walker, shortness of breath and dizziness. The nurse had to get a wheelchair to move her and take her to the car. We are now trying to get a wheelchair. She simply can’t fall for a lot of reasons.

I explained to the cardiac technician that mom was in a fix it stage and that she may take the monitor apart. She has already taken apart a watch, CPAP, and a toilet tank. The plumber was here yesterday to fix the toilet. She keeps telling me that things are broken and she can fix them. The things aren’t broken until she “fixes” them. I can see this becoming expensive. I redirect many times a day but things still happen.

Mom’s screaming woke me up this morning around 3:00 AM. I ran in to her room. She was dreaming and screaming. I woke her up and she tried to speak but her words were all jumbled up. After a couple of minutes she could talk. She told me her mom was whipping her. She was so sad. I stayed with her until she went back to sleep. It’s 8:40 AM now and she’s still sleeping, crossways on the bed. I’ve been up since 4:20 AM. I just couldn’t go back to sleep.

When she awakes, I have to change the battery in the monitor and remove it for her bath. She forgets that she got the monitor and when she finds it asks me what it is. She doesn’t remember anything about this week and yesterday she couldn’t remember my daughter’s name. She is calling me Gayle a lot. Gayle is her younger sister who died of complications of Alzheimer’s the first of June. It’s sad to see her going through this.

Mom has also decided that she has unlimited funds and she wants to pay for everything. She constantly says, “I have money, I’m going to pay.” She is on fixed income and has always been frugal. I usually say, “You paid yesterday, let me pay today.” This seems to work now. We’ll see.

We are taking one day at a time. Doing the best that we can. We see her neurologist on Tuesday for an earlier recheck. Her PCP recommended that we not wait for her planned recheck in September. Things are moving so fast.

I know that I won’t be able to keep her at home at some point. Her safety is the main concern. I’m doing interviews now and forming a plan. It’s better than scrambling at the last minute and being under that pressure.

Thank you to all those in our support system. We appreciate you more than you know. You are all such a blessing.

We’ll see what today brings.

More later!

No Food for Me-Alzheimer’s in the Family

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Mom has been having a hard time since last Friday, almost a week. She fell twice on Friday and has been weak and more disoriented. I took her to her personal care physician (PCP) yesterday as her BP and pulse were all over the place. Pulse varied from 49 to 94 in just a few hours.

The PCP did a physical, EKG, urinalysis and blood work. They told me to call her neurologist and move her recheck appointment from September to now. Mom has lost 16 pounds in less than 6 weeks. I can hardly get her to eat anything. She’s not hungry. We have added Ensure and I can pour it on ice cream if it helps to get it in. We all know how much she likes ice cream but sometimes she refuses that too.

The PCP ordered her a new walker and scheduled her to get a 30 day heart monitor to determine what is happening with her heart. We get that in the morning. Mom has been taking things apart for a while so I hope the monitor survives and we can develop a treatment plan.

I have a call in to the neurologist and awaiting a new appointment. Her PCP says there is a medication that may help her appetite. The neurologist needs to prescribe it but if he doesn’t the PCP will.

This is an interesting journey. No two days are alike. At present mom has extreme difficulty in walking and is very wobbly. She has no energy to do easy and routine tasks. For the past 2-3 days she says,”I know I’m going out.” When I talk to her about it she says she is referring to dying. She just knows she is dying. I always tell her, “Not today,” and that all of us will eventually die. She also speaks of leaving a debt burden for me, although I tell her she doesn’t owe anyone anything. My day is spent reassuring her when she expresses a worry.

So we go for the monitor tomorrow and we get results from all the tests so we can make a new plan. All I can do is keep her safe, love her and reassure her. We live each day as it comes. Thanks to the advice of a friend, I am approaching events and decisions from a clinical standpoint and using my heart to love her. It helps.

More later. Thanks for reading.

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After the Fall -Alzheimer’s in the Family

Yesterday was a quiet day. Mom claimed she wasn’t sore after the fall on Friday but when she moved she made ouchie bsounds. No broken bones. She wasn’t very talkative yesterday and just retreated into her puzzle books.

We had planned to go to church this morning and she seemed to want to go. When she came out of her room this morning in her pajamas, I knew it was a no go. She’s been sleeping in her chair most of today, it’s 3 PM now. She tells me she feels bad but can’t express how and doesn’t respond when I ask her about it.

She has eaten four mouthfuls of food today and when she came to the table she was very unstable on her feet and appeared to be dizzy. No falls today though so that’s good. We never know how the day will go until we experience it. It can change in minutes, hours or days.

Oh, I forgot to report that Mom took her CPAP machine apart during the night on Friday. Can’t attempt to use it until replacement parts come in. Maybe we’ll just quit using it. Not worth the anxiety.

Alzheimer’s facts: 5.5 million people in the US have the disease with 3 million new cases each year in the USA. 44 million have the disease world wide; it most often affects women (they live longer); no cure; meds may or may not slow progression (not working for mom); annual cost of memory care is $127,000 to $158,000.

This disease takes a toll on health, wellbeing, finances and the family. It’s devastating to the person suffering from the disease.

We’re taking it one day at a time. Doing the best that we can. Tomorrow is another day.

More later!

Wander Woman-Alzheimer’s in the Family

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Yesterday started at 7:00 AM and it seemed to be a pretty good day although Mom thought it was 2013. She was excited about getting her hair did. When she returned home she looked beautiful, thank you Jackie.

I needed to go to town to pick up her prescriptions. Mom decided to go with me although she couldn’t remember where I was going. We took off to town for an adventure. Little did I know what an adventure it would be. We picked up the meds and headed to her favorite store for a little shopping. Shopping for me is picking up needed items. Shopping for her is hanging on to a cart for stability and looking, never buying.

We were shopping together and I was putting things in the cart. Journals, new pins, grocery items. Mom was just looking and looking. She asked me to get some storage containers from the top shelf. In the time it took to turn and get them she was gone. Three seconds tops. I called and looked for her but she was no where to be found.

I went to store management and asked them to page her and gave a description, including what she was wearing. They paged several times and I continued to look. Employees were helping me search for her. I was beginning to feel a little panicked and almost ready to call the police when we found her wandering and oblivious. 12 minutes of being scared for my Mom.

I had her stand beside me as we checked out and went to the car. She had no idea of the scare she put us through. Our fun adventure was over and we headed home.

I spent a couple of hours researching GPS items so we can track her it she wanders again. And. It will happen even with constant vigilance. I want to be prepared. This is what is being ordered:

When we got home I was exhausted but needed to cook dinner. I sautéed chicken breast with onion and stir fried squash, garlic, bok choy, and mushrooms. It was the first time Mom had ever eaten bok choy and she liked it a lot. She actually ate everything on her plate. She told me the meal was so good and that I was a better cook than she. She said it sincerely and with love. Looked like the day was ending on a better note.

Soon after the meal she began to cry. I asked her what was wrong and in a minute of clarity she said, “I didn’t want to go out this way.” We talked about it for a bit with me reassuring her that we would be okay. And. Just like that she forgot about it. The rest of the night was uneventful.

Today we started our day at 7AM. She remembered how to make coffee and had it ready when I came to the kitchen. She had a burst of energy so “we” washed her sheets, made her bed and were just putzing around doing odds and ends when she FELL.

I was right there with her but she wouldn’t let me help her up. In her stubbornness she fell forward the second time. She will be sore but nothing appears to be broken. She laid on the floor for a few minutes at my insistence. I could not get her up. Luckily Jackie was at the beauty shop next door and she came to help me. We got her up and into her chair and told her to sit there a while. Mom complied.

Mom’ cousins Glenda and Eugene were coming and bringing lunch (lunch was delicious thank you Glenda and Eugene). Mom was doing better but we all noticed that she was talking like a little girl and pouty. It is almost 3 PM and she’s still talking like a little girl and pouting. She is being quiet and withdrawn.

Each day is different and there are some difficult moments. We meet each of the days with love and patience. As it should be.

More later.

A Day in the Life – Alzheimer’s in the Family

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Yesterday was an interesting day. Up at 7:30AM to meet the day. Mom has remembered for two days how to use her cell phone. After her usual Greek yogurt breakfast it was medication time. She came into the kitchen to get water and stood at the sink and said, she couldn’t get water. There was no glass on the counter and she couldn’t remember to open the cabinet to get one. She just looked around looking puzzled. I went over and opened the cabinet and there were the glasses. She had such a look of surprise on her face and a big old smile about the glasses magically appearing.

I had the neighbor look out for her so I could go to my doctor appointment. All went well and mom was packed and ready to go when I got home. We were going back to her house for a while.

On the trip home mom was talkative for the first time in weeks. She asked me a couple of dozen times where her medication was and I patiently told her each time. She said she wanted to drive her car when we got home. I reminded her that she can no longer drive. She wanted to know who said that and I replied that her doctor said that. She wanted to know why the doctor was only telling me and not her. The rub is that he did tell her.

She doesn’t believe that she can’t drive, live alone, or that she has Alzheimer. She went from being angry to crying. I told her not to worry because I would take care of her, it is our new normal. That didn’t make her any happier.

We finally arrived at her house. She doesn’t remember any of the conversation, that she got an award at church Sunday before last, or that we had been staying at my house. She “read” her mail as she sat in “her ” chair and she has reverted to not communicating.

She is still not hungry and will only eat a little bit of food (unless it’s ice cream). Sometimes she chokes when she tries to eat. We were up early today, 7AM, she’s back in her chair reading the newspaper and being very quiet. I can’t get her to eat her breakfast but she will eventually. She’s getting her hair did this morning. She’s tried to cut her own hair several times in the past week. We’ve had a lot of redirection going on.

Lessons learned this week: Move all knives to a safe location; move kitchen shears to a safe place, put pictures of what is in the cabinets on the doors (thanks Liz); get a baby monitor (thanks Michelle); put locks at the top of doors out of eye level; gin up the patience; and love with all your heart.

More later.

Ice Cream Nazi-Alzheimer Disease in the Family

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Today has been an interesting day. Mom woke up around 8:30 AM and was in a mood. She was a little cross and didn’t want to eat breakfast, which is usually Greek yogurt with fruit. She eventually ate the yogurt and promptly went to sleep. She was “put out” that she couldn’t have ice cream for breakfast. It was a no from me. When she woke up again, Ilona (a friend who lives with me) supervised her meds for me as I was working on a project on the patio. Ilona is a wonderful young woman, an EMT by trade, and she is very good with Mom and Mom is really fond of her.

Later in the morning Mom decided that she needed to help out and started vacuuming a couple of rooms. We just let her “help out” as it was really important to her. She remembers the vacuum but not really how to vacuum. In the greater scheme of things, it’s okay. We will clean up later when she is asleep.

Later in the day Mom got up and left the room. She went back to the bedroom and for the first time in weeks she remembered how to use her cell phone. She called her lifelong friend, Zona. She hasn’t been able to use the cell phone for a long time. Somehow it clicked for her today. With Alzheimer Disease you never know what the day will bring.

Mom was not interested in eating lunch and absolutely refused. She said she wasn’t hungry but I highly suspect it’s because she couldn’t have ice cream. I’m not the soup Nazi from Seinfeld, I’m the ice cream Nazi. “No ice cream for you!” I prepared sauteed chicken, bok choy, and mushroom rice for dinner. She did eat a little and said she was full. Then she asked about ice cream. I said, “Mom, you said you were full.” She said she just wanted ice cream. Maybe before bedtime. She can’t live on ice cream and I don’t try to argue about it but she simply can’t have it for every meal and not suffer from malnutrition. We walk a thin line.

At the moment Mom is engrossed in Web of Lies on the ID channel. She’s fixated. She has not worked any in her puzzle books today, which is unusual. I really don’t know what that means. At 7:45 she asked if it was bedtime. I told her it wasn’t so shes still awake at 8:25 PM. She has hardly spoken today. No conversation. She’s just in her own little world. It’s where she feels safe. All I know is that tomorrow is another day and I have no idea what tomorrow will bring. All I can do is love her and keep her safe. Each day is a blessing. I wouldn’t have it any other way. More later.

It’s Ice Cream for Dinner-Alzheimer Disease in the Family

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Our days are pretty low key as stimulation, even conversation, is overwhelming for Mom. She likes the quiet and solitude of staying in the house and working her puzzles everyday. At least while she’s got the book and the pencil in her hand she can’t pick at her skin. Our days are full of a lot of redirection. This is not meant in a derogatory way but is meant to be fully transparent about dealing with Alzheimer. Most of the time we have to reason with my Mom similar to reasoning with a toddler. I’ve never been known for my patience but I find that I have infinite patience with her. That’s a blessing, no matter how you look at it.

Being a caregiver has it’s challenges. I will be 67 next month and this isn’t how I planned to spend my golden years. That’s okay. Caring for my Mom is my responsibility and an act of love. I have no siblings to help and must depend on hiring people to get a break. As a caregiver, one can’t leave the house for any period of time without someone coming in to “help” Mom. Yesterday my dear friend, Tracey, took me out to lunch at a new, nearby restaurant. 44th and Kings, a nice little place. We were gone about two hours and the neighbors watched out for my Mom while we were out. It was revitalizing to get away and laugh and joke and catch up with my dear friend. I felt like myself and a real person. I miss that part of my life. The travel, the meals out with friends, the things are too numerous to list. When we get into a better routine we’ll be able to have structured help and I, as a caregiver, can do a little more for myself to stay sane. Hope that happens soon.

Many decisions are being made. We will probably live at my Mom’s place for the foreseeable future. We have been living two weeks at Mom’s and two weeks at my house at Myrtle Beach. Each trip is hard for her and I believe it will be best for her to be in a stable place that is familiar to her for as long as she is able. We will probably go to her house this week. I have a business in Myrtle Beach and two homes. I want to keep my residency here so there are issues to be addressed. Planning is key to everything. Planning gives peace of mind.

After lunch with Tracey I returned home to find Mom sitting right where I left her, puzzle book in hand. She ate 1/2 of a pimento cheese sandwich and ice cream for lunch. I did some chores and took a little nap. Mom had eaten a soup mug of chocolate chip ice cream for dinner and was too full for the planned nutritious meal. Sometimes you just have to go with the flow and let it be. Life is short, especially for her.

Mom has started taking her CPAP mask off during the night. Now she seldom will tolerate it except for a few hours. Even if she quits wearing it altogether, why worry her about it. She doesn’t understand and it will just add stress for her. We aren’t looking for battles, we are looking for peace. At 83, how much can not using the CPAP shorten her life? It isn’t important in the greater scheme of things.

Mom woke up at 10 AM today and had her usual Greek Yogurt (after I redirected from ice cream) for breakfast and is already into her puzzles. She’s not talking much today, which is okay. Today looks like a quiet day. I may get some chores done but I may not. This journey may be a loss of self for my Mom but it is also a journey of self reflection and self awareness. It’s hard for me but I’m equally sure that it is harder for my Mom.

More to follow. I hope this baring of our truths can help others. That is the goal.

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!