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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.

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.

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.

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.