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.
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.
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.
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.
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.
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.