Tues. April 8, 2015 morning

Dad had a low grade fever yesterday, so the nurse kept him in the dementia wing during lunch. We visited with him there, but he did not eat anything. Nursing staff are concerned about the swelling in his legs. Main nurse said she asked to have the doctor check him.
We were able to see a lot of acting out and shouting from the residents in the dementia wing. This was very disturbing to Mom, so we took Dad to his room to wait for staff to put him to bed for his afternoon nap. “I don’t ever want to go through something like this,” she said. “Just let me go, okay? This is too hard to go through.”

Mom’s eye exam went well. No glaucoma. No change in prescription. She is quite happy.

I’m re-reading sections of the book The 36-hour Day. Mom gets super sensitive about some things and I have to remind myself of why she will have a few outbursts now and then…what the book calls “catastrophic reactions.” We call them over reactions…but I need to remember to slow down, not offer too many suggestions, and when she repeatedly asks the same questions, to respond to her without sounding like I’m talking to a child.

Not sleeping well in general. Last night was one of the worst; seemed like I was awake most of the night tossing and turning.

Mom’s friend’s husband, Lou, died two nights ago. She has another relative, Laura, with lung cancer and little time left, although she is scheduled to come over Friday with Carol, another relative, Friday for an afternoon meal. Mom is worried about “things happening in three’s.”

2:00 p.m.
Dad was bright eyed when we arrived today. No temperature. He had a good lunch. Nurse concerned about labored breathing, so he was hooked up to some oxygen. Dr. has ordered some blood work and an x-ray. We brought some of his own compression stockings, but the staff had temporarily taped his legs. When he arrived a few weeks ago, Dad was given some medicine to increase his appetite, so that’s why he’s generally eating better. It’s also why he has gained some weight.

I’m still dragging from lack of sleep. Will probably take a nap, but better set an alarm so that I don’t sleep more than an hour.

9:30 p.m.
Mom received a call from the nurse. Dad is being given medicine for a lung infection and he’s doing better. This upset Mom, but she also said, “At least he’s there and they are looking out for him. If he were home, I wouldn’t know if he was in trouble. Well, I know I won’t sleep tonight.”

Thurs. April 9, 2015 6 a.m.

Got a bit more sleep last night.

Well, Wed. April 8, 2015 should go down as the day Mom and I peeled off a major layer in our “housemates” relationship.
“You make me feel like an idiot,” she said, crying.
“You make me feel like a child,” I replied. Of course I immediately thought: not skillful!
“Well, you are my child. You’re my baby.”
“I’m your 68-year-old baby.”

Nobody shouted. We just both sounded frustrated. We were both being honest.

Of course she feels like an idiot. Her short-term memory is quite impaired at times…and then when I explain something for the 5th or 6th time, my “teacher” voice probably kicks in. I think I’m trying to sound kind, but to her it probably sounds like I’m talking to a 5-year-old.

After the exchange, she opened up quite a bit and I listened. It was very helpful.
Throughout her married life, Mom has been given an allowance. In recent years it has been $40 per week. I tried to get Dad to raise it to $100/week, but he would just chuckle. In the meantime, he managed all the finances until it got to the point last year when it would take him about an hour or two to write a check. That’s when I convinced Mom she needed to take over check writing, and she has been nervous and uncomfortable with it ever since…to the point of going to the bank and having a trusted manager help her.
So with me setting her up with some general files…reminding her over and over that she did file income taxes and received her refunds already…the project of consolidating everything at one bank…my getting frustrated when she takes us on weird routes to places because she doesn’t quite remember how to get there…and then her having to be in charge of all the decision-making and feeling lost, afraid, angry, and frustrated…the pressure cooker naturally builds up pressure.

I’m glad she can easily share her thoughts and feelings. I’m fascinated that as much as she HATES anyone telling her what to do, she hovers over and directs others by telling them what to do. That said, she is quite aware that I’m there because I want to help her get things organized and adjust to their last chapter together with Dad in long-term care. She is also worried because when I go back to Missouri for an extended visit, she wants to be able to take care of things on her own. We’re working on that: auto pay for bills, using one bank, creating a file system for statements, driving herself to local places, etc. Understandably…it’s all so much so fast.

I also think she is fearful about her own cognitive functioning. During our discussion last night I was able to tell her of my concern about her frequent confusion. She cannot seem to remember that she now has the bank books and keeps them in a place she decided is safe. When she looks at recent banking activity in the ledger, she thinks Dad did these things…wrote these checks…made these payments. And then, as gently as possible, I tell her, “He can’t.”

Friday, April 10. 2015 afternoon

Difficult day yesterday. Mom and Dad had an argument. He’s hooked up to oxygen and after lunch we were in his room and he needed to wipe under his nose. Naturally, the tubes were in the way a bit and Mom watched horrified as Dad tried to remove the tube. She was very nervous and shouted at him “No! No No No!” Then she slapped his hand lightly. “What the hell are you doing?” he shouted. “You need the oxygen! I don’t want you to die! You want to be dead?!” “What are you talking about?” he asked. “You need the oxygen. You need to get better. I want you to come home!” she said. And it went back and forth a bit until she broke down sobbing. Clearly, she was sorry she slapped him, but I saw that once before at home.

I sat on the unoccupied bed and just watched. No way was I going to suggest anything to her. The few times I’ve done so set her off. I just let the whole thing play out and it resolved itself, although I remember thinking that this was another reason she should not care for him by herself. She yells at him and he yells back…plus she has the potential to slap or throw things. I’ve read that this is quite common for caregivers who are under a great deal of poorly managed stress.

Today’s visit went well. He had a big smile when he saw us. Didn’t say much, just looked and smiled. Mom dotes on him…kisses his arm and his hand…tells him how much she loves him…how much she misses him. We just sat together in the TV room of Section C. Most of the residents were not very responsive. One lady occasionally yelled loudly. Another lady held on to her baby doll like a mother bear. Ruth kept asking to leave, although she smiles every time we arrive because she thinks she and Mom went to high school together.

One of the caretakers came by and put another bracelet thing on Dad’s left wrist. The white one has his basic information. The new red one has no information. Mom asked if that was another ID and the caretaker said, “Yes.” So I asked ID for what? “DNR,” he quietly responded. Mom asked what that was and I explained that the red bracelet lets staff know that if anything should happen to Dad, they are obeying his power of attorney for health and they won’t hook him up because he doesn’t want that. It was the simplest way I could explain it to her. Later Peggy the social worker gave me two copies of doctor signed DNR forms. She said they are good anywhere in Illinois.

We were also told that Dad was having a bit of congestive heart failure. His medicine has been adjusted. He’s eating well, but has gained weight due to his being given medicine to stimulate his appetite. My…It’s all chemistry, isn’t it? I’m glad all the paperwork is in order and that he has the red bracelet. That could save a lot of heartache down the road. After I explained the red bracelet to Mom she was quiet for a while…and teared up. Then she said, “You know… some people just live too long.”

Had another “glory trip” in the car this morning as she tried to remember where the license plate place was. She had to pay for new stickers. It took 40 minutes, but we got there okay, although my blood pressure was probably elevated from my effort to keep my mouth shut and just drive.

It’s clear to me that the honeymoon phase is over. I can hear my cousin say, “I’m surprised it lasted this long.” Maybe some of my friends who have been through this would say the same thing. I no longer feel so altruistic. I often shift into how-do-I-keep-my-sanity mode. The bad days we’ve experienced will only get worse. The good days and calm clouds of time are to be enjoyed. Several times today she said to me, “I’m lucky to have you here.” And yet she wants me to be back in MO and to be managing okay by herself.

We’re still waiting on her lawyer and then the doctor to give us a letter saying Dad can no longer manage his affairs. Dad’s trust gives Mom the authority to declare that, but we’ll have to deal with Social Security and moving Dad’s payment to Mom’s bank, so a medical authority will probably be needed. Also, we can’t finish consolidating the banking matters until we get the doctor’s letter, for which the lawyer is supposed to help provide wording. The doctor will not provide his own letter because he doesn’t want it to interfere in any way with what Dad’s legal papers say. I understand why he’s being cautious.

In two weeks Mom will have her annual exam with the doctor. I mailed a confidential request that her cognitive functioning be assessed initially by him, and if needed, furthermore by specialists. She has many signs of early dementia, and if that can be diagnosed, then I will need that verification later, maybe in terms of her ability to drive, manage finances, etc. I hate doing this behind her back, but I’ve learned that it is not an uncommon request made by family members.

We’ll have lovely, clear weather this weekend, and it will be good for her to practice visiting Dad on her own. We talked about her doing this. I will feel comfortable visiting Missouri for a few weeks as long as I know she does well driving locally and to visit Dad. She might rely on neighbor Kevin to help with driving her if the weather is bad.

There is little I can do at this point without her permission. That may change in time, but I certainly hope she can maintain some independence for a while and feel more confident with banking matters and driving. It seems like 80% of the time she’s fine, but the other 20% is plagued with confusion, misinformation, and the inability to accurately comprehend all the mail and banking matters.

I know it is likely that eventually I will be responsible for her long-term care. I am very firm in my conviction that when that happens, we will need to be in Missouri. As long as Dad is with us, however, home is where she needs to be. She would never consent to relocating them both to Missouri.

Remote control: It disappeared. I remember turning it off before we left the house a few days ago and it was on the ottoman. It vanished. We are using the remote from upstairs. I don’t remember seeing it in her hands. I think I was the last to touch it. I have searched everywhere. Gone. Ah…this is what it feels like to be losing my mind.

Measuring cups: I needed a cup measure yesterday. Opened the drawer where they are kept. Not there. I asked Mom if she knew where they were. She spent 20 minutes going through stuff in the kitchen. She could not find them. We later found them nestled in with some metal bowls that stack. I did not put them there.

Bank books: Last night Mom complained again that she doesn’t know where Dad “keeps” the bank books. I reminded her that we found them all after I arrived and she decided to keep them in a certain drawer. She retrieved them and sat at the kitchen table pouring over numbers…shook her head in confusion…and needed to ask for some explanations. She has a difficult time reading small numbers when handwritten. A “3” looks like an “8” to her.

Some people would suggest that she let me take over the finances for her to keep things organized. Some people would also suggest that the landing on the moon was fake and eating chocolate is a cure for memory loss.