Bumpy Ride – Alzheimer’s in the Family

Last Sunday we woke up to mom bleeding again. She had been on a lower dose of xrelto for just two days. The bedding was covered in blood. I got the bleeding to stop with compression. It was a mess and the end of xrelto for her.

Mom wanted to go to church so we got ready and arrived at church (with a first aid kit) at 10:45 AM. The parking lot was empty and the church was locked. Mom didn’t remember and I didn’t know that church on 5th Sunday starts at 9:30 AM. Oh well, we tried.

We (I) decided to ride around the countryside to see what has changed since I moved away 47 years ago. It was a pleasant experience and mom even remembered some of the home places and she was quite amused at some of the large bean fields which had multiple scarecrows.

We ate at her favorite restaurant (Smithfield’s BBQ) again. She didn’t remember what they served and she had trouble deciding even with my help. She just struggled. She got to see and speak with some of her friends while we were there. I consider that a win for her.

When we got home, her friend Charlotte stopped by and we had a great visit. When she left Shirley stopped by. Mom didn’t know who she was at first but she remembered with a little prompting. When the visitors left mom went to sleep in her chair. Her arm had bled off and on all day. It finally stopped around 4 PM.

I called her GP early Monday morning and left a message. They called back before 9 AM and told me she couldn’t take xrelto and to stop it and keep her on the 325 milligrams of aspirin. I had already done that. I also made an appointment for that afternoon to get the FL2 form that I needed for admission to assisted living.

Glenda came to visit mom so that I could go to the doctor appointment, it went well. We discussed the xrelto issues and items pertaining to the FL2 form. I expressed concerns about the difficulties surrounding getting guidance and help as we have hit one roadblock after another. If it wasn’t for friends who have been through this, I would be lost. It shouldn’t be this way but our health care system in this country sucks, especially for the elderly and poor.

The first thing that the doctor said to me was, “We were wondering why you hadn’t asked for this form before now. We know how hard caregiving is and don’t want you to lose your health or die before Ms. Joyce.” Surprised me. Now I’ve heard it from three doctors “take care of yourself.” I’m trying . The doctor also said that mom’s valvular incompetence was the worst they have seen and they didn’t know what the cardiologist would recommend. They are helping us get her cardiology appointment moved up. No luck yet.

I picked up the FL2 form on Tuesday and went directly to meet with mom’s case worker. The doctor listed mom’s issues in this order: Alzheimer’s Disease, atrial fibrillation, coronary artery disease, hypertension, Hyperlipidemia, depression, anemia, and edema of the extremities. Gee whiz.

Mom’s case worker was a huge help. I signed multiple forms and made an application for assistance for mom. The case worker told me of the next steps which includes an application with social security. She also called the assisted living facility to tell them that mom had a pending application, the facility will admit her with the pending application.

I called social security and their first available appointment is November 1st, I took it. The agent told me that they don’t recognize a power of attorney and that mom should go with me. I explained the situation so the agent said they didn’t want it to be a hardship for her so I have to bring any paperwork that shows my name in relation to doing business for her. It seems complicated and I may have to take her in. I don’t understand how they think someone with Alzheimer’s is capable of signing any documents at all. Absolutely stupid. We’ll see how this all pans out.

We planned to come back to the beach on Wednesday. Mom bled all over the bed again, 3 days after stopping the xrelto. Craptastic. While I was washing sheets and packing to leave, Jackie offered to do mom’s hair. Thanks Jackie. Mom looked beautiful. We headed for the beach around noon. It was so good to get home.

Mom has been sleeping a lot since we got here. Here bp is low normal and her pulse is typically 40 to 47, which may make her sleepy. Ilona kept mom for me to see my friend, Ray, and get some down time. Ilona is such a huge help to me and I’m so glad to have her in my life. She is a very special person. She has given me three more days that she can keep mom so that I have much needed breaks. I appreciate her.

Friday mom wouldn’t brush her hair nor allow me. She slept about 70% of the day but she ate a little more than usual. She got a serving bowl sized ice cream for herself and laughed with me when I asked her about it. She said it was just the right size for lunch. She thoroughly enjoyed all of that ice cream and promptly went to sleep.

More later.