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The next phase...

Nine years I cared for Mom and Dad everyday. In 2009 we moved them into my home with a private room and sitting room. They were happy there for two years together until Dad passed away in 2012. Mom was good there until her Alzheimer's progressed to the point she wouldn't sleep and required 24 hour nursing. So on March 20th she fell and had a tramatic brain injury. After a brief hospital stay she came home with Hospice of the Valley support. I cared for her as long as I could but once my health was in jeopardy it was time for her to go where she could get 24 hour nursing care. So she is now at GlenCroft Care Facility. I visit nearly everyday.

My life has entered a new phase. Now I care for other people's mothers as a in home caregiver. I'm working 40-50 hours a week as a caregiver. Plus I am working another 20 hours as a Public Relations rep.

Christmas

My daughter was able to visit from California the week before Christmas. It was nice because our holiday time together was mostly just the two of us. Mom was there but very quiet and still confused as to who Julie was and why was she here. Julie’s very good at calming mom and letting her know she’s someone who loves her and that is all that matters.

When Christmas Eve rolled around mom and I went to mass at 4 PM and had our usual seats in the back of the church. It was crowded and there was an overflow mass in the hall. But we managed and enjoyed the decorations and the enthusiasm of the children. Mom seems to spot every baby and take joy from watching them from afar.

But again it was a bittersweet holiday for me without daddy. Mom doesn’t seem to remember him much anymore. If you do try to explain the reality of the situation, she gets angry and accuses you of being mean. I guess at this stage it’s best to go with the flow and live in her fantasy world. After all, it is Christmas, talk about Santa to every child. So let the magic and fantasy Christmas fill our hearts with joy and happiness. And let there be peace on earth.

Thanksgiving

 Holidays it become very difficult. First with daddy gone, they just aren’t the same. And it’s hard to know whether my daughter will be able to join us since she lives and works in California now. It seems the rest of the family has become fractured as well. The kids sometimes go to their dad’s family. My sister works long hours and never knows whether she’ll have time off. So all I can really plan on his mom and me.

 The other reason becomes difficult is anything out of the ordinary routine seems to upset mom. She becomes overtired and anxious. The desire to “go home” becomes all-consuming. You can see it in her eyes that she is in pain and very tired. Guess often stay too long and I have to let them know that we have an early bedtime in this household.

So for that reason I kept my Thanksgiving plans very simple. I roasted turkey, made mashed potatoes, peas and bread. I told anyone coming over to bring more to fill in around the basic dinner. My niece Stephanie made a bread pudding with Rum and raisins that was delicious. There seem to be enough food for everyone.

Another Stage Has Begun Wednesday November 7, 2012

Another Stage Has Begun Wednesday November 7, 2012

The last few days we have advanced to another stage of this disease. Mom is seeing ghosts or other people everywhere all the time. And she often doesn’t know me and is afraid of me. Her language skills are diminishing with slurred and irrational thoughts. Delusions are a constant. A couple of weeks ago she pulled that stunt of trying to jump out of the moving car. She did it again today. We went to the post office and she was fine with waiting in the car as I ran in to the post office to drop off a package and check my mail box. We do this all the time. But when I returned and started to back out she insisted there was another woman in the post office we needed to wait for and she would not leave until the other woman got in the car. I started to back out and Mom unhooked her seat belt opened her door and had a leg out as I was starting to pull forward. I stopped quick and almost smashed her leg in the door. I yelled for her to get back in until I parked. I re-parked and we had a screaming match as I was so scared she could have been hurt. She insisted there was the other woman in the post office so I said okay let’s go get her. I got her out and we went all through the post office looking for someone who didn’t exist. Finally she was convinced and we returned to the car. But again she didn’t want to go and this time I called my sister who was waiting for us to pick her up. My niece talked to Mom and convinced her to come to their house. I don’t know why she will believe everyone else but not me. I think we have a loss of faith that I am her caregiver and she doesn’t want me to tell her what to do anymore. Maybe I need to call in someone else for her to take a vacation from me. But who?

We went to the bank and Wal-mart with my sister without incident. But when we got home my friend Larry and a worker were building bookshelves in the living room. They had power tools including saws out. Mom seemed to get in the way every time she moved. We tried to get her sitting safely in a chair but she wanted to do the opposite of anything we asked. I yelled at her loudly when she reached to pick up a power saw by the blade! It was an extremely dangerous move and she was angry at me yelling at her like a child – yet she was acting like a child doing dangerous things. My heart was pounding. Even when I yelled at her she continued to try to play with the hot power tools. I physically had to grab her away from the danger.

When I think back her dangerous actions started early in the day today. I went upstairs and got dressed and had a few envelopes to address before we left. When I looked up she had climbed the stairs and was walking toward me. She had a smarty pants grin on her face knowing she wasn’t allowed upstairs and seemed to expect me to react. So instead I told her to sit down and help me with my work. I had her sealing envelopes and rubber banding the stacks. Then I took her into my room as I changed and even put her at my makeup chair to do her chin whisker tweezing and moisturizing and lipstick. As we went down the stairs one at a time I pointed out how dangerous it was for her to climb the stairs alone. And I made a point of how her hip hurt after. She insisted it didn’t hurt. It’s all about making me wrong at every comment. Again I think I need to give her a break from me. I just need to figure out how to do it. I need to find a caregiver to move in for a bit. I put it out to the universe to bring someone to me.

Home all day Saturday October 27, 2012

It’s like she wants to be going somewhere all the time. She wanted to go to school when she woke up and dressed in the oddest combination of clothes you could imagine. This is a woman who always wore coordinated and matched outfits totally appropriate for the occasion. I took her in and changed into stay home clothes because I told her, “No school on Saturday.” I took her into the backyard to work on watering plants and watching me clean the pool, do weeding and planting. She enjoys sitting in the sun. She scares me getting too close to the edge of the pool. So I steer her toward a chair where she can watch me safely. She’s fine watching me work.

As soon as we go into the house she wants to go home again. Every day, a hundred times a day, we go through the “I’m going home now,” routine. Sometimes I can use distraction, “let’s do this first…” or I say “I wish you would stay with me because I will miss you.” Often I follow her down the driveway and she runs out of energy and comes back. Today I drove her around the neighborhood until she confessed she didn’t know where to go to get home. So we returned home I give her a Zanax and she sleeps all afternoon in front of the tv.  Some days we go through extreme range of emotions and have even been to the Urgent Care with blood pressure off the charts. But an hour later all is forgotten and back to the beginning again.

Haircut Friday October 26, 2012

Trudy has been doing Mom’s hair for many years and she does an excellent job. Each time it is cut it comes in whiter and whiter. Usually I sit and talk to Trudy while she is working on Mom’s hair, but today I had another stylist cut my hair right next to Mom and Trudy. I could hear the stories Mom was telling Trudy about how she and Daddy were traveling and going places. This was stimulated by Trudy saying she was going to Mexico on vacation. Mom went on and on weaving intricate yet unfeasible stories based on all of her travels in the past. One minute in Las Vegas, then LA, then in Maine. It made me wonder how that mind of her works. It’s all in there she just can’t put it together correctly. Trudy knows and can see how far Mom has slipped into another world. She takes extra time and gives Mom special attention. I tipped her a little extra.

We went to the bank to try and get my sister’s loan processed. The paperwork wasn’t ready yet.

My sister came home with us to watch Mom while I went to pick up a new TV with a friend. While I was gone my sister says Mom tried to leave to go home at least four times. She would walk with her and guide her back home. The afternoon Zanax puts her to sleep on the sofa and she is in bed by 7pm.

Doctor Visit Thursday October 25, 2012

The doctor had called the night before to suggest we go in for an EKG before she say us on Thursday morning. The test run the week before along with blood work had some abnormalities she wasn’t happy with and wanted to see if they continued. When I mentioned we would discuss her hip and leg pain, she also ordered an x-ray of her hips.

So we got on the road early and stopped by McDonalds for a coffee and Egg McMuffin before going to the lab for the tests. Mom was in a good mood and enjoyed going out for breakfast, even on the run. I noticed she was reluctant to drink her coffee even after I had cooled it with ice. She had been choking on liquids for some time and had really reduced her drinking lately. It was one of the things on our list to discuss with the doctor. I know Dad had a problem drinking thin fluids after his stroke so I was familiar with the issue.

When we got to the lab so early we got right in for the x-ray. I was planning to wait in the out waiting area and the nurse took Mom back for the x-ray. Within a couple of minutes she was out asking me to join them in the back. Mom was disoriented and confused. So I went back to get her ready for the EKG – putting on the gown and waiting for the technician. The test went quick and we were off to the doctor’s office test results in hand.

We were early and there was about a half an hour wait. As always, with waiting, Mom was very impatient. She wants to be going all the time. Several times she wanted to leave. She got irritated we needed to wait and upset when other people went back and we didn’t yet. Finally the nurse called us back and got Mom and I into an examination room. We waited another fifteen minutes. The nurse buzzed in and out doing blood pressure and meds history. The time went fast to me but to Mom it seemed an eternity. She continued to complain she didn’t know why she was there and had to wait.

When the doctor came is she still wasn’t happy with the EKG results. There were a couple of issues, one old and familiar but a new one had cropped up. She wanted to change the meds taking away some of the anti-depressant and anti-psychotic. But she added another Zanax the one that makes her calm and sleep. So now she will get one at 2pm and another about 7pm. Effectively it will make her sleepy all day so we won’t be going out much. After discussion of the swallow issues the doctor ordered a swallow test to be done at the hospital. We went over all of the meds again and doctor understood the progression of the congestive heart disease and repeated swelling of the ankles. It’s something left to me to monitor.

Finally we left and I made a quick stop at the Social Security office to get information on getting a new card. I had lost mine and needed it now. It was a quick hop in and out the door learning they didn’t do them at my west side office. I need to go downtown or north valley to get a new card. I could see Mom in the car waiting the entire time and she was fine in a cool shady spot. When I returned she was fine and I thought it would be an easy stop for me to pick up paint I needed on the way home. Home Depot wasn’t busy and again I left her in the car with the windows down. It was for all of five minutes as I ran in grabbed what I needed, went through self check-out and ran to the car. As I opened the car door she looked at me with a shocked look and said, “Who are you?” She really didn’t know who I was at that moment. As I started the car she insisted that this was her daughter’s car and I had to get out. I drove away thinking getting home was the best bet. We live just across the road. She continued to objet as if I were a car jacker and she began to attempt to get out of the car as I drove on to the main road. She failed to get the door open or her seat belt off and I got to our driveway in less than a minute. My brother-in-law, Fred, was working on his truck in the driveway next door. I told her to ask Fred who I was. And as soon as he said I was her daughter, she said of course I am her daughter, as if nothing had just happened.  I was beginning to think I was the one who needed a Zanax!

Holiday Plans Low Key

Wednesday October 17 2012

After discussions with my Alzheimer’s experts I have decided we will have a very low key holiday season this year. It is all too much for Mom to handle. So if it is okay with all of you, we will not do any big dinners, gatherings, gifts or tree. We need to stay away from shiny and fluttering things like bows and gift wrap, ornaments and flashing lights. All of them tend to stress Alzheimer’s patients and Mom is very far out on the edge now. She is anxious and upset all of the time. She wants to go home so bad she is running out on me several times a day now. And her attitude is severally depressed and negative. Everything is always wrong and off-setting to her. So we need to keep everything calm and routine. She may need even more than the double Zanax she is getting now which will put her to sleep earlier.   Just so you know her bed time is 7PM these days and she sleeps in till about 7-8AM most mornings. Her congestive heart failure is worse and I give her water pills frequently to keep the fluid retention down. She’s up to 140 pounds today, up from 125 after her last hospital stay. We are watching her close. She goes to the doctor again on Oct 25^th. In fact we will go get blood work done today.