Patience, not necessarily a virtue- Alzheimer’s in the Family

We came back to mom’s house in Newton Grove on Sunday, November 17th. Mom was happy to be home. I paid bills and caught up things at her house. She sat in her chair and read the newspaper over and over with no communication.

Monday my daughter and grands came to see us. Ansley skipped school to come and it was a special day. Ansley is six and Hayden will be 2 next week. Hayden has been jibbering a lot but on this visit we could understand a lot more of what she said. When she got here she ran to mom calling Granny, Granny and she hugged her. Melted my heart. She also called me Grandi for the first time (that I could understand). So special.

On Tuesday the 19th we had an appointment with her neurologist in Raleigh. I knew it would be a difficult day when she came out in her pajamas. It’s always a sign of a challenging day when she’s not dressed when she leaves her room. I told her she needed to bathe and dress soon as we were going to her neurologist. She said she wasn’t going.

Zona, her best friend, came by for a while and I had to tell her we needed to get ready for an appointment in Raleigh. When she left we had to rush to get mom ready. It was too much. Mom needs to take her time because between the not eating and the A-Fib she simply needs a lot of time or it’s a disaster.

We did make it to the appointment and mom had lost over 18 pounds in 8 weeks. She had difficulty answering questions too. The doctor said she was in an extremely rapid decline. The doctor also talked with me about the high possibility that I will develop Alzheimer’s and that I should plan accordingly.

The visit was thorough and the doctor gave me the option of starting mom on Razadyne 2 mg once a day. The normal dose is 2 mg twice a day but due to mom’s sensitivity we are trying a very low dose. It doesn’t reverse damage but it can slow the progression of the disease. I told her we would try it. That was Tuesday and the doctor called it in to our pharmacy. As of close of business today, Thursday, Medicare has declined to cover it and the doctor and the pharmacy are appealing and trying to get it covered. Maybe it’s a sign that I need to say no.

I must share that on the way to Raleigh for the appointment mom was talking about many wrongs from her past and asking me if she is dying. I always tell her “not today, mom.”

Glenda, our cousin, came to help with mom on Wednesday. Glenda is one of those special people and she means so much to us. Eugene too! I left at 9:15 am to start all the memory care facility appointments that I had that day. It was a productive day and mom is on the waiting list at a 3 star facility in Harnett County.

One facility I visited that was recommended was a dump. Warehousing the elderly and dementia patients. They told me they had no deficiencies. NC has a website from the agency that licenses these facilities and the post deficiencies (problems) and fines and how the facility is rated. The highest rating is a 4. This facility had a 1 rating and several fines. So much for truthfulness. If you are looking for an adult home in N.C. just check here for information: https://info.ncdhhs.gov/dhsr/data/ahlist.pdf

The last facility that I visited was beautiful and everyone seemed happy and well cared for. Staff answered all my questions and I was impressed and thought this is the one. I was told they had no deficiencies and they also had an open bed in memory care. I looked them up and they had a 2 rating and have had many violations since 2009, with the latest one in August 2019. All in the memory care unit. One incident ended in a death in 2017. This place is also a no.

I wonder if many folks don’t know about how to check out a facility. The place I just mentioned had massive fines and was forced to close for about a year. After reopening they are still unable to provide good care. The death was after they regrouped. They are still licensed in N.C. I don’t know how considering the extreme violations they have committed. Buyer beware.

That was the last appointment. I got home around 4:30 pm. I was physically and emotionally exhausted. I had many tears during the day. It is what it is. I thanked Glenda for all she does. I appreciate her so much. One of life’s blessings.

Shortly after Glenda left I got a call from Rolling Ridge Assisted Living. They had a bed for mom on December 1. It broke my heart to tell them that we had just found out that mom no longer qualifies for their facility. Rolling Ridge is a 4 star facility with no deficiencies for the past several years. The best of the best and in my mother’s community. Life is full of detours.

Tomorrow I am going to Day Spring in Wallace. They have a memory care unit, a 4 star rating and no deficiencies. They also have a long waiting list. It is a sister community to Rolling Ridge. I know that at the end of the day, mom will be on the waiting list. It’s worth waiting for a good fit and a great facility. I would also advise to beware of any memory unit that has an open bed. There is a shortage of these places and if there are openings, there is probably a reason that you shouldn’t put your loved one there.

Mom has barely eaten this week. Several days with 1/2 serving of yogurt, 2 bites of sweet potato, and nothing more. When she eats she says she is forcing it down for me. Her doctor says that at this point not to worry about what she eats or drinks and give her anything to get nutrition into her. I can’t even get her to eat her favorite ice cream. Ice cream. She is down to 154 pounds from 205 in May.

Her doctor also said that in this case it was good that mom was a little overweight at the onset of this disease. The organs in the body usually don’t shut down until the body gets to 80-90 pounds. That said, her A-Fib was probably caused by her lack of nutrition and rapid weight loss. The A-Fib will probably be her demise before the Alzheimer’s gets her. At times I think that it would be a blessing for her to go out before Alzheimer’s completely decimates her mind. This disease is so cruel. It robs the person and their family and friends of so much.

That’s it for now. There will be more later. Thanks for reading. I hope this blog helps someone.