Finding the good in rough times

A lot has changed in 2 months. Mom’s dementia progressed to the aggressive stage. She was becoming combative with caregivers at the personal care home, so a doctor from her Geriatric Specialists Group prescribed an anti-psychotic medication to reduce her agitation. Five days later, mom was in the hospital with Parkinson’s-like symptoms. Her entire body was going into tremors. She couldn’t stand or walk. She couldn’t swallow.

While in the hospital, she was taken off the anti-psychotic medication and prescribed an anticonvulsant medication to counteract the tremors. As a result of the different medications, she was extremely delusional and talked nonstop. Nothing she said made much sense. She would start a sentence and her words would trail off. During her hospital stay, mom daughter visited her grandmother. I had been afraid for her to see her in her angry, combative stage. But, the hospitalization gave my daughter the opportunity to see her grandmother and be a support to my sister, brother and I.

Within 24 hours, mom was “medically cleared” for discharge. This meant that she could be cared for in a nursing home. But, due to her inability to walk or feed herself, as a result of the decision to prescribe the antipsychotic medication, her level of care had changed. The personal care home would not accept her back. So, my sister and I began the search for a “good” nursing/rehabilitation center for mom.

The caseworker’s job is to get the patient out of the hospital as quickly as possible, so he was pushing us for a decision. But, my sister and I put our trust in God during this time, more than ever before. We read devotions, looked and listened for God’s answers. . . and we got them!

“We need a healthy dose of fear that, without Him, we’d be lost. . .Don’t fall behind. Don’t think you can find your way. Don’t run ahead and don’t detour around. Just stay close behind the Lord where the trail is fresh.” — Joni Eareckson Tada

We weren’t going to let anyone rush us into this important decision about our mom’s welfare! I posted an update on facebook, and a good friend of our family recommended the nursing and rehabilitation center in which her mother had been a resident. While waiting to hear back about a different facility, my sister received a phone call from the admissions director at the nursing home recommended by our friend. She immediately liked the woman. So we had our answer!

Once we arrived at our decision, and got mom transferred to the nursing and rehabilitation center, mom seemed to be more pleasant and cooperative. She received PT and OT. A speech therapist worked with her to help her to recover her ability to swallow regular foods again. My sister and I both talked to the diet tech about mom’s food preferences. We thought we were almost “out of the woods.”

As mom regained her ability to walk unassisted, her combativeness returned. Now she wasn’t just combative with staff, she was slapping other residents. The staff doctor prescribed an anticonvulsant/mood stabilizer to calm her agitation. When that didn’t work quickly, she was given xanax. This combination exacerbated her behaviors.

Saturday evening, June 11, 2016 I received a phone call from a nurse at the nursing and rehabilitation center. Mom had physically attacked the nurse. It took two other staff members to pull her off. Then she “stormed down to her room” and went after her roommates. The nurse needed permission from a POA to send mom to the hospital for a psychiatric evaluation. I granted the permission.

After many tests to rule out a physical cause for her aggressive behaviors, the hospital staff physician talked with me on Sunday, June 12, about finding a combination of medicines that would calm mom’s agitation, without producing dangerous side effects. He recommended a different antipsychotic medication than the one previously used. Later that day, a staff psychiatrist interviewed me on mom’s medical history, and he had a different opinion on the antipsychotic medication. After reading the recommendation of the psychiatrist, the staff physician accepted his opinion. Throughout all this, I learned the importance of advocating for a loved one. The nurse misinterpreted the physician’s instructions that day, and she was going to give mom the drug he had initially recommended. When I told her that she should wait in order for him to read the psychiatrist’s opinion first, she told me she thought they were going to consider giving mom the second antipsychotic medication in addition to the first. That could have killed my mother!

On Sunday evening, June 12, mom was started on the antipsychotic, Risperidone. She was also given Depacote, which is a mood stabilizer that works in combination with Risperidone to calm agitation. Between Sunday and Thursday, I saw a steady improvement in mom’s demeanor. My sister was out of town for the week, and my brother is unable to take off work, so I was handling everything with mom.

Each morning, mom would be agitated when caregivers tried to get her awake for the day, but she was less combative each day. During the remainder of the day, she was much more content and pleasant. I visited during her period of agitation. I was able to help the caregivers with mom, not just physically, but also by giving them some insight into what calmed her. It also gave me insight into what they experience in their jobs everyday.

“Imagine, just imagine, a church in which each member used his or her strength to make up for another’s weakness. Eyes see, ears hear, hands hold, and feet move the body forward. When everyone fulfills his function, the whole body benefits. When someone’s not doing his thing, everybody suffers.” — Joni Eareckson Tada

On Thursday, June 16, mom returned to the nursing and rehabilitation center. I was babysitting my granddaughters during the day. My husband relieved me for a short time that morning so that I could go into the hospital to make a check on mom. She was in a wonderful mood with me. After getting back to my granddaughters, I got a phone call that the nursing and rehab center wanted to move mom back earlier than I was able to be there. Moving dementia patients later in the day increases chances of “behaviors.” I was told I didn’t need to be there when mom arrived, so I gave the o.k.

After notifying family, my daughter-in-law texted me that she could leave work early so that I could leave earlier to meet mom. I left for the nursing and rehab center at 1:30 p.m. On the way, I was praying, just as I had been continuously for the last 6 days. I was praying for God to help me feel his presence, because my sister had been out of town since Monday, and my brother had had to work all week. I was thinking, “I hate going in there by myself Lord, not knowing how mom is going to behave once she gets there!”

When I arrived, the admissions director (MJ) told me mom would be there soon. She was late! It did seem fitting. As I was sitting in the lobby waiting, I saw a familiar person walk by. It was one of my mom’s former co-workers, Cindy, from teaching at Reynold’s Middle School. She had felt “called” to visit mom that afternoon, not knowing that mom had been in the hospital all week! I immediately felt and thought, “God answered my prayer for his presence!” I told mom’s friend (and mine) that God sent me a “Sister in Christ!”

We saw mom being wheeled in on a gurney. I will never get used to that! We waited until she was taken back to the unit, before going back ourselves. As I entered the hallway, one of the nurses was coming from mom’s room. I asked how it was going. She said mom was being “feisty” already, trying to hit the aides who were getting her into bed. I felt heartsick. Cindy and I headed to mom’s room. The door was closed. Two aides were still in the room with mom. I knocked but nobody answered. After knocking a few more times, I slowly opened the door. Everything looked o.k. I told the aides who I was and they said to come in.

After the aides left the room, mom was talking in the same negative way she had talked about the staff prior to going to the hospital a week ago. I felt like Cindy and I were double-teaming her. We distracted her with stories of things she used to do with each of us, looked at pictures, read out of books, looked at magazines, etc. I tried my best to reassure her about the caregivers by telling her that I sent them in to take care of her, and that anyone who comes in to take care of her is someone who works there. I left briefly to tell the head nurse that I thought it was a good idea to give mom the extra dose of Risperdal that the doctor prescribed, as needed, for in between the other 2 doses, while I was there. I thought it might help calm her agitation as she acclimates again. The nurse did give the pill to her around 3 pm. By the time I left her room at 3:45 pm, she was calmer.

My stress and devastation over mom showing signs of still being aggressive with staff there was made worse by the attitude I perceived from the caregivers toward me. Before leaving I stopped in the office of MJ the admissions director. I told her that the nurses and aides were being so unfriendly to me, and made me feel like they are mad at me. She said they are scared because of the episode with mom last Saturday. I understand that, but it’s not my fault, or even my mother’s fault. I was doing everything in my power to provide help while I was there, and even suggested the medication to calm mom. My mom is ill. MJ did reassure me that the behaviors from mom were to be expected, because any move is very hard on dementia patients, and it ended up being fairly late in the afternoon (not a good time).

I prayed for a peaceful night. I needed to keep my phone by my bed now. It’s so overwhelming! But, as I told mom, when she said, “Don’t make me stay here forever.” “And it came to pass….” I told her that everything passes. She won’t be there forever. I am trying to keep those words in my head. This situation won’t last forever.

The following evening I received a phone call from a nurse again. Mom had vomited and it tested positive for blood! My husband and I headed into the ER. My sister was driving home from her week vacation. She met us in at the ER later that night. Our pastor also visited us in the ER.

After more tests, it was determined that mom probably had a minor irritation that caused the bleeding, and was kept overnight for observation. The next morning, I witnessed again what an amazing difference it makes in having family involved when it comes to getting people out of the hospital. I fed mom cherry jello and applesauce and apple juice on and off, starting at 10:25. She wouldn’t eat for the nurse. She didn’t open her eyes much with me, but talked with me at times. I also fed her some soup for lunch. Then my brother relieved me, so I could go home for a break. He stayed until she was transferred back to the nursing home.

This past week has been a relatively quiet one. I’ve kept my cellphone by my bed every night, but haven’t had any emergency calls. Mom has continued to be agitated first thing in the morning, but fairly pleasant and cooperative the rest of the day.

Yesterday my sister and I visited mom. She was resting in bed. Shortly after our arrival, she vomited on her shirt and sheets. My sister got me the trash can from the bathroom and ran for a nurse. I held the trash can under mom’s chin, and helped her to sit up in bed so she wouldn’t aspirate on the vomit!

When the caregivers got to the room, I helped them strip the bed and they changed the sheets. My sister and I helped mom change into clean clothes. I still question at times, “Why Lord?!!! Why do you allow good people like my mom to suffer like this?” But, when I reflected on all the interactions my sister, brother and I have had with staff and residents at nursing homes and the hospital, I see so much good that is coming from this ordeal.

“Above all love each other deeply, because love covers over a multitude of sins. Offer hospitality to one another without grumbling. Each one should use whatever gift he has received to serve others, faithfully administering God’s grace in its various forms.” 1 Peter 4:8–10