Self Isolation – Alzheimer’s in the Family

As this pandemic continues we can only visit mom through phone calls. Our last call was the best yet. Mom was the most lucid that she has been in weeks. She seems to understand that we can’t visit and tells me not to worry about her because “they take good care of me and I’m safe and happy.” You can’t ask for more than that.

In SC our governor opened up the state to tourism this week. There are many people here from COVID 19 hot spots. I continue to isolate and only venture out for doctor appointments and pharmacy. I order groceries online and pick up without going into the store. My doctor had me wearing a face mask and not going into crowds before it became dictated by the government. I’m thankful for a good and informed physician.

I’m amazed at the number of people who don’t take this virus seriously. The beaches are crowded and few are wearing masks or other protective equipment when out and in close proximity to others. There is a six foot rule here but in most places it’s a joke.

Last week we received a text that the seafood market in Surfside had crawfish and stripped bass. We got our masks etc and headed over. The market only allows 3 in at a time and the employees wore PPE and operate pretty safely. We were the only customers who had on a mask. A man 6 feet ahead of us was about 75 years old and maskless. When he saw me in my mask he went into a diatribe about the virus being a hoax and the liberals doing anything to discredit Trump. He continued railing about it and I just ignored him.

Bless his heart. He was the third that was allowed in the market with us. He finished shopping and paid and then came over to glare at us, in our space. I turned my back to him and he continued to glare and smirk. I guess that he decided to leave because we wouldn’t engage him. What a bullying, frightened little man he was.

We bought our seafood and left. The crawfish boil was delicious as was the air fried stripped bass. Sweet justice for putting up with one of God’s troubled children.

With the governor removing some restrictions my doctor is now able to perform my needed surgeries. I’m scheduled for next Wednesday for a cardiac cath and to have an ICD implanted. An ICD is a hybrid pacemaker/defibrillator device.

I’m relieved to finally be able to get these procedures. Under pandemic rules and to keep hospitals from being overloaded these procedures were deemed as elective. I have a long list of symptoms that would be an emergency room visit. I’ve been on restricted activities since February as my heart is functioning at 30% EF. The meds to strengthen my heart causes hypotension with my BP dropping to 80/40 at times. I have some really bad days. Good thing is that I can’t do housework or anything that causes exertion.

During this time I’ve enjoyed hammock time, reading and writing and FaceTime with family and friends. I miss everyone so much.

I am a little anxious about the procedures but I look forward to a pretty normal life after recovery. Recovery is about a month but it will be the same as I’ve had to live now with the limited activities. I’m looking forward to feeling better and living a more normal life.

I am happy that a room in memory care opened up for my mom two days after I was diagnosed with the heart condition. Doctors had told me to place her due to concerns over my health. I am physically unable to care for her and am so glad that she is in such a good place.

Unfortunately several people who hardly spent time with mom have told me that she doesn’t need to be there and that if I loved her I would keep her at home, no matter what. I try to think these folks mean well and just don’t understand. I encourage people to be supportive of folks even if you don’t agree with decisions being made. unless you have lived it and know all the details you shouldn’t make judgments. Life is hard enough as it is without the unneeded and unappreciated comments both to me, my family and my mothers community. For the record, I’m tired of being maligned for making the best decisions for all of us. Be kind.

As always, more later.

Memory Care – Alzheimer’s in the Family

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Mom went into memory care nine days ago. Things went so well that I didn’t wait the recommended ten days to visit. I went yesterday, eight days since admission. I had been getting updates from the unit manager about how well things were going.

Mom has been making new friends, participating in activities, and has been very cooperative with her care givers. Each of the staff told me how sweet Miss Joyce is. Mom tells me the staff is very nice and the place is very clean, and has really good food. She says that she feels safe there. In conversation it came out that, although she didn’t want to leave her home, she wasn’t feeling safe there.

Mom is helping residents who are further along in their dementia/Alzheimer’s Disease. I believe this gives her purpose and makes her happy. She now admits to having Alzheimer’s but says her mind is clear as a bell, unlike some residents who have,”lost their minds.” She remarked about how sad that was.

We had the same conversations over and over but mom was engaging with me, something she hasn’t done for many months. She would ask friends what their name was again and then she introduced me as her daughter. One of the ladies looked mom in the eye and said she’s beautiful, then she smiled at me. It was a beautiful experience to be there and interacting with mom and her friends.

There are 28 people in the memory care unit and only four are men. It is a quiet place and the caregivers are kind and have much needed patience with the residents. Mom already has favorites in the unit, both residents and staff. She thanked me for placing her in a very nice facility. I really cannot ask for more.

We will continue to visit and I encourage her friends and family to visit when they can. There is a faith book in her room that you can sign and write a note. It will help her know that you came when she doesn’t remember. If anyone would like to send her something, she goes through word find books rapidly. They can be found at the dollar store. Just write her name on it. She received a card from Mary and it was the first thing she showed me. Thanks Mary, it means a lot.

That’s it for now. We appreciate all the support and we’ll wishes. More later!

Changes – Alzheimer’s in the Family

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Last Monday the TB test was read and is negative. We left the beach and went back to Newton Grove that afternoon. Mom was a little angry with me but I really didn’t know why. She seemed indifferent about being back at her home .

On Tuesday Glenda and Eugene stayed with mom so that I could pick up her FL2 form from her doctor. I really appreciate their help and support during this journey. I left the doctor’s office and went to Day Spring to complete almost 3 hours of admittance paperwork and to see mom’s room.

Everything went well and on Wednesday, after mom’s hair appointment, I took her to Smithfield’s BBQ (her favorite restaurant). We then left for Day Spring. I didn’t tell mom where we were going until we were on the way. I had agonized about telling her because she just wants to stay at home.

My voice trembled and tears filled my eyes as I told her that I could no longer care for her and keep her safe. I told her that it was an honor and privilege to care for her and that I loved her very much.

In the moment of lucidity she replied that she understood and that she loved me and she would adapt. Wow. She was matter of fact, no tears and full of acceptance. Prayers were answered. We talked about the place and how I would take care of her house and she was completely ok.

When we got to Day Spring, Ray was there to help us. He knew I was moving her in alone and he was simply there to help. It gave me such a sense of relief. It was good to have his support.

The director came out to greet mom. She had come to Myrtle Beach to do mom’s intake the previous Thursday but mom didn’t remember her. Mom did, however, hug her neck. We took mom in and she commented on how nice the place was. She was very animated and happy.

When we got to her room we discovered that her roommate was someone that went to school with her at Westbrook and mom has known most of her life. They had an emotional reunion while I set up moms side of the room. Clothes and books put away, feminine comforter and shams for her bed and heart garland and pix for her wall. Unfortunately, I didn’t get any pictures while there.

While setting up the room Ray and I noticed that my hands were trembling terribly. I guess it was all the anxiety of placing mom coming to a head. I didn’t stop trembling until later in the evening.

Mom was such a social butterfly and making friends. It was totally out of character for her. She was ready for us to leave so she could visit with her new friends. She said, “Just come see me sometime.” Then she was engaging with her new best buds. The move in could not have been any better.

I have not visited since move in day. I was advised to wait at least 10 days so she could settle in. I have called and talked with the memory unit manager and she assures me that Miss Joyce is doing great and engaged with new friends and participating in activities. I find this simply amazing as she has been so introverted over the last year and showed no interest in anything. I consider it divine intervention. All this reinforces that the decision to place her was the absolute right one. She is flourishing.

In the meantime I have slept in my own bed for the first time in over 8 months. I’ve slept from 9 pm to 9 am. I’m feeling some better physically. I start my doctor appointments on Wednesday to figure out what is going on with my heart and other issues. I’m hopeful that these issues are reversible with the major stressors removed.

I’m in the process of adjusting to yet another new normal. Hopefully one with a lot less stress.

Also, I was asked to tell folks that if you send cards to mom, please don’t send cash or checks, just cards. Also, we are asking folks not to visit before next weekend so that mom can settle in. We thank you all for your love and care.

More later.

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The Time is Nigh – Alzheimer’s in the Family

We have been at Myrtle Beach since 12/27. It has been quiet and mom has been on a plateau since her hospital stay. She is physically doing much better. Mentally she has become worse since Thursday. There is a notable decline. She is back in 2001 and she is very confused.

Our home health care provider (hhcp) started last Monday and she is great. Mom thinks she is sweet. Elisa is coming Monday, Wednesday and Friday for 5 hours. This has allowed me to get out of the house to meet friends, run errands and go to Urgent Care. She actually got mom to start a painting of bluebirds and trees and they made friendship bracelets. Mom hasn’t done anything like that for months. She won’t even attempt it with me. New face = new person to please.

When I returned on Friday, Elisa talked with me privately about mom’s mental decline over the past two days. She had a hard time with her as she went to a dark place about my father and wouldn’t redirect. Elisa eventually took her out to the patio in an attempt to change the mindset. Mom was and is in victim mode again. Sad to say.

Tommy, mom’s brother, and David came to visit and spent an afternoon with us. It was a good visit but mom seemed lost. She didn’t remember that Gayle had died and asked Tommy about her. We have decided to tell her a fiblet. We will tell her that Gayle is in Michigan, which she is, and avoid her grieving afresh each time she learns that her sister has passed.

This week I got a call from the memory care facility. The director came on Thursday to do the intake paperwork. They have a bed for mom. The two ahead of her are male and a female bed was open. We got mom’s TB test today and I pick up the FL2 on Tuesday and hope to move mom in by Thursday.

This couldn’t have come at a better time. I’ve been experiencing extreme fatigue and have no energy. Ilona kept mom for me to go to urgent care on Sunday. I had my first ever abnormal ekg. I was diagnosed with left branch bundle block but the doctor said that wouldn’t cause the fatigue. The bloodwork and ekg results were forwarded to my Primary care physician. I am being referred to a cardiologist and internist. Hopefully, we will get to the bottom of it soon. It just reinforces what 3 of mom’s doctors and my doctor said about placing my mom and preserving my health.

I had included in an earlier blog that 40% of caregivers die before their patient. That figure has been recently updated to read 60%. It’s time for placement and I’m so happy mom is going to a 4 out of 4 star facility with no deficiencies in over 10 years. One of the best in NC. They also have memory care therapy, which is very important.

I have mixed emotions about placing mom but I know in my heart, mind and soul that it is best for both of us. I have worried that something would happen to me and mom would become a ward of the state. Not a good thing. Having her placed and the funding in place will prevent that from happening.

This journey is long and hard. I’ve come to realize that when one does their very best, that’s all that one can do. I have learned not to beat myself up over decisions made. The priority is keeping mom safe, secure and cared for.

As always, more later.

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What Day is This? Alzheimer’s in the Family

We went to Newton Grove on 12/20 and stayed until 12/22. We went to Oak Grove Church on Sunday and then to Smithfield’s BBQ for lunch with friends. Everyone was so excited to see mom and she received many good hugs. After lunch we visited with Zona, mom’s lifelong friend for most of the afternoon. It was so good watching them interact.

When we got to mom’s after visiting Zona, I saw that a panel of the storage building was pulled out enough for a person to get through. I went out there and got spooked so I called Larry to come over before opening the building. We discovered that someone had been in and drawers to dressers had been left open. We closed the panel and that was that. I might add that I awoke around 2am to the sound of metal scraping. I didn’t see anything and went back to bed. Now we know what I heard. It’s a sad state in this country when people violate your space when you are home.

After Larry left, mom and I went to my daughter, Jeremi’s, house to stay through Christmas. We had a wonderful visit and mom did pretty well. Mom was taking the travel really well. She retreated into her books but she was in the room with us. She got showered with a lot of love.

I made sugar cookies with the girls, which was a huge deal for all of us. As we were making the cookies Ansley said,”I haven’t made cookies since Memaw died.” She then asked if I was making new memories with her. She is 6 years old. We talked about Memaw several times during our stay. Ansley just misses her so much. Hope is missed by everyone as she was such a dear soul.

My son, Amos and his family came over on Christmas Day and we had a lovely time. Good fellowship and lots of good hugs. Overall it was a good holiday.

Mom and I went to her house on the 26th and visited with family and friends. We came back to the beach on the 27th. It’s good to be back at the beach. The parts have come in to fix my storm door that was broken in a breakin attempt. I will install the parts tomorrow.

It has been quiet at the beach and we will be spending the bulk of our time here while we wait for her space in memory care. Today I hired a home health aid who will start on Monday for three days a week. I’m looking forward to the help. Of late I’ve felt depleted and have been suffering from some depression. I’ve been the only caregiver 24/7 for the last 7 months. I’m just not able to do it much longer. The memory care facility believes they will have an opening for mom soon. I hope they do.

Mom does not want to go but it is beyond me to keep her safe. That said, she doesn’t listen to me like she will anyone else. It’s normal but hard. This journey is full of ups and downs. It doesn’t matter how much you love someone, the reality is that you must love them enough to do what is right for them. Sometimes that includes placement.

More later.

Withering Away – Alzheimer’s in the Family

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We are back at Myrtle Beach as of Saturday afternoon. It has been a hectic few days. Mom is on the waiting list at Day Spring and there are only three ahead of her. That is good news.

We are waiting on the confirmation letter from social security before we can open an application for aid. This will be the second attempt and it takes weeks because of the bureaucracy. In the meantime if a room opens up it will be self pay until the applications is filed. We are hopeful.

Mom has lost 5.1 pounds in 8 days. Today she ate 1/2 serving of yogurt and 2 bites of a sandwich . She asked me to please not feed her anymore today. She just can’t eat. It’s sad to watch and be totally helpless to help her. This disease is devastating.

I got to take breaks on Saturday and Sunday nights thanks to Ilona taking care of mom so I could get a much needed rest. Thanks to Ray for the company and the movies. I appreciate both Ray and Ilona so much. My friends and family make this journey more tolerable.

I’ve been cooking for Thanksgiving today. We are having what I call an orphan holiday late lunch at my house, for people who can’t home or don’t have a home to go to. Mom has been instructing me about the food, but bless her, she can’t remember and can’t help. We laugh and carry on. We will be spending the weekend celebrating Thanksgiving with family.

I really don’t know why but today has been a weepy day for me. I’ve cried at the drop of a hat. Maybe I just need a cleansing cry. These days have happened every few weeks in this journey so I just go with it and then it passes.

So now for thoughts about action plans for both young and old. Trust me, if you do these things your family will have an easier time if one becomes incapacitated for any reason.

– make a living will and have it notarized and/or registered with the clerk of court

-create a durable power of attorney, if you have this in place your wishes can be legally followed

a. name someone you can trust and alternates as POA

b.covers medical, real estate, investments and other issues

c.use an attorney and have it filed with the clerk of court

d.it isn’t expensive

e.your family will be grateful

-create a list of assets: life insurance, financial accounts, real estate, jewelry, cars, anything of a positive value/include account numbers if applicable

-create a list of liabilities/bills/people you owe. Include account numbers and phone numbers

-get long term care insurance (if you are younger the premium is very low, if older it can be expensive) it will protect your assets if you become incapacitated

-avoid the mindset that it won’t happen to you or that you have “lot’s of time”

-if you notice a family member in decline don’t wait too long to intervene

I will be adding more to this list soon. It is really important to address these things to avoid delays and hardships in getting things that you need. While it will not remove stress it will reduce stress and frustrations to your loved ones when they are trying to help you.

My journey with mom has been stressful and frustrating because many of these things were not done. Also, in hindsight, she was making bad decisions for the last 10 years. It tells me that she was astute at hiding her fading memory. Unfortunately, doctors don’t make a diagnosis until they can no longer handle finances or get lost while driving. In my opinion, by this time your loved one has been in danger for way too long. This needs to change.

There will be more later. Have a wonderful Thanksgiving. We intend to here.

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.

Mom and dad on their wedding day

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.

Mom 4th of July 2014
Mom the practical joker
Mom and best friend, Zona

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.

Mom at 30
Mom and Me
Princess Mom at 80th Party

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).

Family

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.