We almost made it

We almost made it

All day we discussed our plans for dinner and the book club tonight. We went through a list of possible dinner options and decided on the Shrimp and Vegetables at China Grill. It is right on the way to the book club and easy access with parking at the front door. So we headed out early at 5:30pm to give us plenty of time to relax.

Not a quarter of a mile from the house a woman in a red Dodge Charger pulled out almost hitting me. I had to smash the brakes and float into the next lane watching the car to my right brake back too. We went about 30 degrees sideway even though we were only driving at the posted 40mph. But no one got hit. We drove on giving the offending woman dirty looks. But Mom was grasping her stomach. She was in pain and her heart was beating fast. Her anxiety level was pretty bad. I thought a cup of tea and time to unwind would get her under control. But she just got worse and we had to pack dinner to go and head home. Another missed book club meeting.

Mom is resting on the sofa watching her Funniest Home Videos always a stress reliever for her.

The Ghost in the Room

The Ghost in the Room

It seems there’s a ghost in the room. Mom walks into the living room and wants to know where the girl went who was sitting on the sofa a few minutes ago. We had been the only ones in the house all day. But she insists there was a girl sitting next to her on the couch. Today she even shared her sandwich with the little girl. When I said we were the only people in the house, she became agitated and nearly knocked over her water and the tv tray her lunch had been on as she was going to go hunt for the little girl.

We are also dealing with the stranger in the mirror issue more frequently. She walks by a mirror and sees a stranger looking at her and she gets afraid. But she is simply seeing herself. The experts say to remove the mirrors or cover them up.

My latest distraction ploy involves a spa treatment. Mom’s skin is getting very dry. So whenever she pulls the, “I want to go home now” bit, I say “later… right now we need to do a facial to relieve your dry skin.” Then I spend the next 30 minutes rubbing cleansers and moisturizers into her face. The warm washcloths and gentle rubbing often put her in a more relaxed state and she naps. By then it’s time for dinner and the anxiety is relieved.

Everyday she seems to think it is Sunday. She gets up and dressed for church. Then she wants to know if I will take her to church. When I say that I will on Sunday morning but today is Wednesday she is shocked. This happens most every day.  So once a week she gets it right.

I know my experiences are not all that unusual. My cousins are dealing with the same issues with their Mom, my aunt. And millions of caregivers around the world are managing the same problems every day. They may not seem like such big problems, but it is very stressful in the moment. Especially when the terror and anxiety is felt by someone you love. You want to help them overcome the prison in their mind. It changes every day so there is no one answer to the problems. They evolve and you must continue to seek new answers.

I can see the next hurdle approaching. The garbled speech. Already when tired she tries so hard to find the words, but it comes out unrecognizable. Her mind plays so many tricks she doesn’t know what is real and what is a dream. So it’s hard to decipher what she wants to say.

Yesterday she was certain her sister Reggie was taking her out to lunch.  All day she talked about it and I reminded her that Reggie is in North Dakota and we are in Arizona, so she probably can’t make it for lunch today. But over and over she repeated the same story. At one point she walked to the porch with her purse wanting to know where to catch the bus so she could meet Reggie. I suppose it is a blessing that she can’t walk as far as the driveway without help. At least she can’t wander too far. It’s just one of the reasons she needs to be watched 24/7.

Frustration

The frustration levels of dealing with Mom have been high as of late. But then I need to remember her frustration levels are even higher and never seem to get relief. The guilt over trying to make the best decision about what she needs can be overwhelming. Her meds as prescribed by the doctor have several options and decision points. There are pain, diuretics, and vitamins all to be used as needed. Those decisions are difficult when Mom can’t answer questions to help with the decision making process. I have to go by gut or past experiences. Then there is decision to fill out paperwork like the “do not resuscitate”. Recently the insurance company sent a letter asking what was being done about a tumor we have been watching on the adrenals. Her doctor and I decided it would be too difficult on her to proceed with a biopsy, since surgery would not be an option whatever was found.  So we don’t know if it is benign or cancerous. And it has been very slow growing. We just watch to see what happens.I write the insurance reply to say, no we opted out of cancer treatment like chemo and radiation.

The falling down is a daily problem. She is very unstable needing assistance even in getting up off the sofa to go to the bathroom. The walker we got her at the beginning of the month is wonderful, but she can’t walk far to use it much. She spends more time sitting on the seat with me pushing her. She pumps the handles while sitting thinking it will power up to move her. Her energy levels are low and taking her to Bingo yesterday wore her out. She was asleep on the couch right after dinner and in bed by 7:00pm.

I am comfortable with my life being totally tied to Mom’s needs. She is like a toddler needing constant supervision. Otherwise I get fires in the toaster from inappropriate things being toasted, butter in her coffee, teapots almost melting from being heated without water, too much salt or sugar if it is near her, air freshener being used as hair spray, and pain stop roller being used as a Bingo dauber. Yesterday she threw away unplayed Bingo sheets and insisted they had shorted her. She messed up more games than ever - even won once but forgot to call Bingo. She won’t eat all of her food, often playing with it making a mushy pile. But then she will wrap leftovers in a napkin and hide them in her purse. And the purse and wallet are constant companions. She wants cash so I make sure she has a few dollars. She moves it from one pocket to the next so many times it is like playing hide and seek. Then she insists someone is taking her money. She stuffs so many odd items into her wallet it won’t snap shut. And she hides her purse in drawers and closets so she can’t find it. It’s often on a hanger under several buttoned shirts and sweaters to protect it from thieves.  There is no one in the house to be a thief!  I know it is all a part of the disease and she can’t control her behavior.But it is frustrating!

In my mind I imagine the end coming in so many different ways. When she fell hard in the bedroom a few nights ago I screamed and my mind raced to the entire scene from when she fell before and paramedics taking her to the hospital and surgeries and complications with her heart. Sometimes I wonder how much my heart can take of these stressful incidents.  Even stumbles make me think if she fell and hit her head on the coffee table it could be fatal. So do I move the coffee table away? Coming in from the car she would wander off the sidewalk teetering on the precipice about to tumble into the yard. So I widen the path and hold her arm.  It all reminds me of the fears when I first became a mother. They told me then it was because new mothers have a protective hormone that comes into play causing you to have nightmares of your child running in to the street. But why do I have those nightmares about Mom now? Do I have too much of that worry hormone?  My solution is to get up early and write. Take a swim before Mom wakes up. Read a good book. And mostly to pray. The Serenity Prayer is my constant companion. I even laminated a copy for Mom to read with me.

Thank God for Larry

The other night at 8:00pm I was turning down Mom’s bed with me on one side and her on the other. I don’t know how she did it, but she twisted her feet and tripped on her cane and went flying down on her right side and hit her head on the door knocking the closet door off the track. My scream should have woke the dead! After checking her out a bit nothing seemed broke, but she was sore and too weak to get up. I ran upstairs to wake Larry up (he was sleeping early to get ready for his 36 hours work shift) and he came down and lifted her up like she was a feather.  She did scrape her elbow and bled a bit.

She has been falling and tripping more than usual. Her legs are very wobbly and tire quickly. We went for a walk through two aisles at the SwapMart on Sunday and she had to sit most of the time in her new walker and be pushed. Even just the walk from the sofa to her bed seems too much at 8:00pm bed time each night. I have to hold on tight because her legs give out frequently. She seems like a rag doll.

We have an appointment with the doctor in two weeks.  We will check into what is causing this weakness.

I did get a letter from Cigna about the follow up scan of the tumor on her adrenal glands. Dr. Abubakr said it is very slow growing and not feasible to remove. We just watch it with ultrasounds.

We aren't having as many fights over "going home" at night as she is too tired and weak most evenings now. The confusion has advanced to most of the time now. Distraction with photo books is the best calming device. We built a new book from our vacation and she enjoys that one most. She still reviews Dad's Memorial book everyday multiple times. She's not sure who he is but knows he is related somehow. Occasionally there is a touch of clarity.

Today we go to see Trudy to get her hair cut.

Night Wandering

The night walking has begun. People have told me this can become a problem and now it is happening. Mom sleeps much of the day in front of the TV sitting up. Then at night she wakes up and wanders the house looking for something. At midnight she climbed the stairs in total darkness and went into Larry’s room. He woke up and took her back downstairs to her bed. Then at 4am she was calling me from the bottom of the stairs. She said she lost the baby and thought the baby was under her bed. When I tried to get her back into bed she got down on the floor to look under the bed and saw there was no baby there. Trying to lift a woman with a hip replacement up off the floor is no easy task. But I got her back into bed. But an hour later she is opening doors to the laundry room and garage searching again.

This morning Larry and I decided some door latches up high and an alarm to let us know she is out of her area would be a good idea. We will start working on that today.

California Vacation

The thought of taking a confused person on a road trip to California was a bit daunting. I had promised Daddy I would take Mom to see Jo’s home in Temecula and so we were going. But I decided I needed another person to help maintain control of Mom. So I invited my 12 year old nephew to come along. He was very happy to oblige! And he was the best caregiver you could ask for, at Mom’s arm all the time helping her and carrying what needed to be moved. The drive over was easy and we made two stops to stretch our legs and get a drink. The car didn’t need any fuel. The new Toyota Prius hardly used any fuel in town getting over 45mpg in stop and go traffic even with the air conditioning on! Out on the highway it made 37mpg.

Arriving at Jo’s home was a bit overwhelming but a happy reunion. Mom knows Jo still and was happy to see her beautiful home. Although by evening she insisted we were in someone else’s home and needed to leave. This is a common thread even in our own home in Glendale. The boys had all gone to the fireworks at the Pechanga Casino a few blocks away. Mom was confused and over tired. She was so tired it made her sick and she was vomiting and losing bladder control all at the same time. After cleaning her up I thought she would go to bed. But no, her mind played tricks and she gets a guilty feeling she should not be where she is staying. She thinks the police will come and arrest her. She believes everyone is lying to her. So she began the fight to leave even trying to walk out the front door in her night gown and robe. She had Jo nearly in tears. I’m more accustomed to the battle, but was so sad to see my sister Jo upset. After several hours of frustrating discussions I managed to get her into bed. I slept on the floor between her and the door so she wouldn’t try to leave in the night.  

The next morning she was fine. We got dressed and went to the casino for a couple of hours and Mom was in her element at the poker machines. She needed Jo’s help pushing the right buttons, but she won $45 right away and we put away her starting stake of $20. She continued to play off her profit for a couple of hours. She enjoyed it and we walked slow and she rested frequently. Then we drove to old town Temecula for shopping and site seeing. After only a block of walking, it was apparent it was too much for her. The wood railroad tie like sidewalks were difficult to push the walker over and she was likely to trip. So Jo brought the car up and we went to the golf country club for brunch. It was beautiful and we took pictures in front of the lush waterfalls. Mom really enjoyed her praline waffle with strawberries! The rest of the day we spent at home relaxing. Jeff made delicious chicken kabobs on the bbq and we ate on the patio. It was a totally relaxed and comfortable meal. But somehow it was still too much anxiety and Mom lost her dinner without a bit of notice. Again we cleaned her up and had her in bed by 7:00pm. That night no fight. I think she was too exhausted. Still I slept beside her on the floor to be sure she didn’t wander off.

On Sunday we drove to Irvine to spend a couple of days with my daughter Julie. The traffic was heavy and construction made the 2 hour drive take longer, but it was pleasant enough. We were at the Marriott SpringHill Inn at the John Wayne Airport. It was a nice place. Julie met us and took us out to Seal Beach to the Beachwood BBQ restaurant for dinner. Her business partner Brandon joined us and we had a delicious meal. After the meal, Julie took Roger down to the ocean, while Mom and I sat on a bench across from the pier. Mom got cold so we went to the car to warm up and drove around looking at the neighborhood. Knowing she would tire out we headed back to the hotel for an early night.

Monday was a day of adventure starting with an excellent activity Julie found for us. We went to Sherman Gardens and Library, a beautiful botanical garden with easy to walk paths and lots of restful seating. Mom enjoyed the easy walk, I loved the flora and we put Roger to work taking hundreds of pictures. A couple of hours were delightfully spent working up an appetite. So Julie took us to Laguna Beach to Big Fish. We had a great meal there and found a parking space right next to the beach so Julie and Roger could swim while Mom and I watched from the bench above. It was a perfect warm but overcast day. Roger really enjoyed the ocean and made friends who taught him how to boogie board. Amid such a blissful day, Mom still was experiencing anxiety over every little thing. She worried about every child in the ocean going out too far. She worried about the car being parked in someone else’s space – it was a public paid parking meter that I kept fed. She thought she had an appointment and someone was missing her somewhere. Every attempt I could think of to help her stay calm with distraction, music, prayer, stories of our lives, comment about the beauty around us right that moment… nothing keeps her calm. It’s like an stormy ocean always brewing in her mind. And I don’t get the guilt. Is that a Catholic upbringing that makes her worry about being guilty of something. Even being in someone else’s space; she wanted to leave the public bench because a gentleman walking his dog might want to sit there. I struck up a conversation with him about his cutely dressed Chihuahua that yapped at everyone. I asked if he wanted to sit down and he said no he had been driving too long and needed to stretch his legs. That finally calmed Mom a bit. Again we made an early night and Roger went to swim in the pool. Mom worried about Roger being too young to be at the pool. He was fine. She worried the tv was too loud and they would throw us out. It was barely audible. She went to sleep early. When Roger returned he and I played on the computer and some kids on the floor above were running in the hall. Roger took it on himself to go upstairs and politely asked the big sister to quiet the children because his Grandmother was asleep on the floor below. They apologized and quieted down. What a great kid Roger is! I am so glad I brought him along.

Tuesday we took off for home making a stop in Pasadena to have lunch with Mom’s sister Josie and her niece, my cousin Lisa. I enjoy getting to know Lisa again after many years. We share many interests, not the least of which is handling this terrible disease, Alzeheimers, in both of our mothers. Josie is two years younger than Mom but her symptoms are more advanced. I believe she had a more stressful life. But the two sisters sat next to each other like strangers. Pleasant but without much recognition even when told, “that’s your sister”. I see they both played with their food, eating a bit but not sure how to handle it. I know now I should order her simple bite sized finger food like chicken strips. She doesn’t care what she eats anymore and flavors have no appeal. There are no cravings. Except maybe for sweets.

Finally we made it home and the next day when I asked how she enjoyed her trip she asked, “What trip?” She had no memory of any of it. I put together an album of pictures of her in the various places we went and still she looks at them without any recall. So maybe the trip was more for me to fulfill the promise I made to my Father. And for Jo and the boys to see their Grandmother again.  But what it taught me is that it’s not a good idea to take her on trips. She needs the stability of the daily routine at home. Even short trips at home can be stressful. So we will do all we can to keep life peaceful.