I Am Learning And I Want to SCREAM

I have been researching about Lewy Body Dementia and I am really struggling with conflicting emotions. First I "need" to know what is happening to my mother. Which is what pushed me to search the internet for information about Lewy Body Dementia. But the more I search the more emotionally conflicted I become.

Mom first became "sick" almost 6 years ago. She went into the hospital in November of 2005. The same time I was diagnosed with breast cancer. She went from her assisted living apartment into a rehabilation center and I started chemo. I told my sister and brothers that I wanted to take care of my mother and they said I had all I could handle taking care of myself. Which was true but that didn't take my desire away. I submitted and allowed them to make decisions for Mom and I concentrated on living.

I made it a habit to call her every week. Sometimes I couldn't reach her. I would call at a different time and find out that she was out with my sister or out with my brother. And that was OK. I felt that she was being well taken care of.

But, after a second near death illness,my mother began to change. She was not able to carry on a meaningful conversation. She would repeat things over and over. Sometimes she would tell me wild stories.

My favorite story is about her marriage to a wonderful man who was tragically killed in a plane crash shortly after they were married. Her new stepson was going to set her up in a lovely apartment and take care of her. She believed that fantacy for weeks. But then after awhile she moved on to another equally unbelieveable story. I knew nothing about her LBD diagnosis and blamed her bouts of confusion to sleeping too much. Everytime I called she told me she had just woken up or was about to go to bed. I was convinced that she was bored and lonely and was inventing a dream world to makeup for the fact that my sister and brothers seemed to be neglecting to visit her.

I visited her between chemo and radiation treatments. I stayed with her at the rehabilation center and we just sat and visited during the day. She was herself most of the time but there were times when she would slip away and that made me very sad.

I went home and finished my treatments. I continued to call her every week. I was still convinced that all she needed was more contact with a loving family. I was angry that my sister and brothers were not providing that for her. But I didn't know. I didn't know that my sister was doing all the things that a loving daughter does. I didn't know about the dinners out or the trips the the house for the day because my mother forgot about them and couldn't tell me about them. All I knew was the lonelyness in her voice and the confusion, the ridiculous stories, the begging to be taken home. My heart was breaking because I was so far away and I longed to have her close.

On November 11, 2010 I flew to Minneapolis and on November 14, 2010 I flew back to Indiana with my mother in tow. I had such plans. We were going to spend every minute I could spare together. We were going to sit in the garden and sip tea and watch the humming birds and laugh and talk. We were going to be two "old" ladies walking in the park. Then I learned that Mom had LBD.

My mother cannot walk more the a few feet without assistance but if not watched closely will walk down the hall into other patients rooms. She eats like a bird. She cannot verbalize her thoughts so she reads everything that she comes in contact with. She does not remember what she had for breakfast 5 minutes after she eats. She is incontenent both of urine and bowel. She becomes aggitated easily. She is only a shell of the woman I remembered. But, she is funny, witty, mischievous. She is caring in her own broken way. She loves my cat even if she can't remember his name. She loves old movies, and chocolate covered cherries. She likes to watch the birds at the bird feeders and watch children playing in the park. She knows my name and my husband's name. Her eyes light up when we talk about her trips to Isreal. She smiles EVERY time she sees me. A day with her is like a day in sunshine.

I read that people with LBD live on the average of 7 years after diagnosis. Mom was diagnosied almost 6 years ago. I find myself begging God to give me more time. Other things that were important to me just aren't anymore because I want to spend every waking moment with her. If I could I would never leave her side.

No News is Good News

Haven't heard from the Waters today. That has to mean that Mom took her meds today. Tomorrow I will take her home for the day. I am going to try a few things differently. Friday is my day off. It is my day to catch up on housework and to do somethings that I like to do. I haven't been doing that lately and I miss it.

I have been reading about caregiving and I have decided that I need to get some of my "me" time back. So, I have decided that I will either turn the Hallmark channel on for Mom or lay her down for a nap in the afternoon. Then I am going to go upstairs for some cardmaking. I have collected several ideas for cards and I REALLY want to spend some time crafting.

Another thing I am going to do is take some time on Saturday or Sunday or even both days to either play on the computer or do more cardmaking. I think Mom will be fine for a couple of hours. I may ask the Waters if I can bring home her alarm. I have been staying right with her the whole time while she is home. If I go upstairs to my craftroom or the computer I think I will feel better if she has her alarm on. Anyway, I am going to try it out and see how things go.

Mom is Refusing to Take Her Meds Again

I remember having to hide meds in juice, applesauce, oatmeal, anything to get patients to take their meds. Don't nurses do that kind of thing anymore? Here I am stuck in my office because Myron dropped me off and I get a call to tell me my mother refuses to take her medication. GRRRRR
I told the nurse to tell her they were vitamins. Hopefully that will work. If not then I will start going to the Waters in the morning before work to give her her meds. She may take them from me. I called and spoke to the Asstant Director of Nurses about this. She said she would talk to the nurses about trying a few other ways to get Mom to take her pills.

I'm going to go get her on Friday so she can spend the day with me. I'm feeling a little stretched though. Friday is the day I catch up with my housework and I also like to spend time in my craftroom. I haven't been doing that since I have been bringing Mom home on Fridays. But, I am thinking that if I made it possible for her to lay down for an hour or two maybe I could then have that time in my craftroom. I am going to try it and see if it works for us. After all, they often have her lay down for a time in the late afternoon at the Waters. She needs the routine but she also needs the stimulation of being with me.

Christmas In Indiana

I wish I had pictures to post of our Christmas but I just didn't think to take pictures. We went to Pat and Becka's first. They had a beautiful breakfast of scrambled eggs, potatoes and bacon waiting for us. We brought our gifts for the girls. We played with the girls for about an hour and then went next door to Kathy and Tracy's. There Brooklyn met us before we got in the door and Connor was ready to "beat" his papaw up. Connor couldn't decide what to play with first. He would pick up the dinosours and growl and then pick up his mickey car and make engine noises. After a while he was making the same noise for all of them. Brooklyn eagerly looked over her stamping supplies but then put the up where Connor couldn't get into them. She asked for stamping supplies that she could leave at our house. It will be interesting to see if they make it back to our house.

At just around noon we went home to prepare our Christmas meal and then at 1:00pm I went to pick up Mom. She was still eating when I got there. She was more then happy to leave though.

Mom refused to take her meds on Christmas morning. She was slow to respond and very unsteady when we needed to transfer her from place to place. She was not interested in holding a conversation but was content to be in the middle of everything and quietly observe. She was very happy to see Tobby (our cat). She doesn't know his name but she enjoys coaxing him into her chair. Tobby sees her chair as a safe refuge. It is a happy mutuel relationship. Mom does NOT like going into the bathroom. On Christmas she appeared to be fearful of going in. I had to insist and almost push her into the room. Her urine is VERY strong. She is not drinking enough.

Mom just picked at her food. They say at the Waters that she is a good eater. I don't see that. I worry about her getting enough to eat. Sometimes I can get her to eat a few sweets. Mostly she just plays with her food.

I recorded Miracle on 34th Street on the DVR. Mom happily watched that. Then got REALLY interested in How the Grinch Stole Christmas. She was awake the whole day. She did not ask to lay down and did not even one time tell me she was tired. Like I said before she was content to quietly observe. We took her back to the Waters at 10:00 pm. She enjoyed looking at the Christmas lights. Myron took the long way back so she could see the lights. All in all I think she had an enjoyable day. I know we did.

Christmas is just two days away

This will be our first Christmas together for many years. It has changed many of my plans for the holidays. I found that I have trimmed our holidays to a very small gathering.

In the past I made it a point to invite a few people to share Christmas with us who didn't have anyone to spend Christmas with. This year it will be just the four of us. Our oldest son is coming home for the holidays, myself, my husband and of course Mom. But somehow this OK with me. Instead of a family gathering at our house on Christmas Eve, we are taking grandkid's gifts to their respective homes. We will have breakfast at one home and share snacks at another. Then we will go get Mom and take her home with us for the day. We have gifts for her under the tree. AND she will find a stuffed stocking at the foot of her bed when she wakes on Christmas morning.

A very dear friend of mine (fellow cancer survivor) brought gifts for Mom and the woman who does hair at the Waters. I was so blessed by her thoughtfulness.

I wish I could have done more but this year is a learning experience. Maybe next year I can be more generous.