Learning life lessons

If anything good can be said about living with an Alzheimer's patient, it's that I'm learning so much every single day.
I'm learning to be patient. I always thought I was kind of a patient person, but living with Mom now has expanded my patience level a great deal.
Yesterday, we had to sign some papers in front of a Notary Public. Because Mom doesn't sign her name much any more, I had her practice signing her name before we left the house. When we got to the Notary, perhaps 15 minutes later, Mom couldn't remember how to sign her name. She started to sign "Mom," and I patiently corrected her. She finally got all three signatures down, but only after we practiced more.
I'm learning to be more observant, which I thought I was before, but I am finding I am not.
I watch Mom now more and discern what her behavior might be indicating. I'm getting good at reading her sign language and interpreting what she wants to say, although that's getting more difficult almost by the day.
I am learning to rely more and more on God and not my own self. That's a hard one and I don't know why. I have been a Christian since high school. I still have vivid memories of accepting Jesus into my heart and knowing I am a child of God. I also have vivid memories of when I joined the Catholic Church and how I went to Mass in the lovely little chapel on the Fort Wright College campus. I read my Bible daily and learn from it each day.
And I am learning who my true friends are. Right before Christmas, a friend of Mom's, who has known Mom close to 80 years, called her. She hadn't bothered to call Mom in more than six months. Before I called Mom to the phone, I told this friend I didn't appreciate her behavior and, knowing how ill Mom is, the very least she could do is keep in touch with Mom. She started saying how ill she had been, but I didn't want to hear it and didn't care.
And when I called a person who I thought was a good friend because I really needed to talk to someone about Martha's behavior, she dismissed me, said she'd call me back, but didn't until several hours later. When I related these incidents to my support group buddies, they all agreed that through this, I will find out who my friends really are. And I am.
I hurt enough from living with Mom and this disease for someone who says they are my friend and to call whenever I need to talk, to not be bothered when I really need them. I don't call people to talk about what's going on all the time. My group of friends who I feel I can talk to is dwindling.
When I really need to talk, I talk to God. He always listens. I'm learning that too.

Christmas 2010

I really wanted to make this a Christmas to remember. I just have this feeling that I won't have Mom for another Christmas, at least one that she will remember or participate in.

First, we got this HUGE tree. It's an oddity - trees look so much smaller on the tree lot than when they come into your home. But this year, Mom and I spotted this tree right off the bat. I asked the tree folks to trim some off the bottom, but they didn't, so when they delivered the tree, it nearly hit the ceiling. In fact, the guy hit the ceiling fan twice when he was putting it in the stand for us. But it's a perfect Grand Fir and smells so good. Mom loved that tree the minute it came through the door.

The next step was decorating the darned tree. I always start at the bottom with the lights and work my way to the top. Mom usually helps me, but didn't offer this year. So I got the lights on as far as I could reach and it still left about three feet at the top that was completely bare and that's with eight strings of lights. I knew I couldn't get any ornaments up that high, so I finally called on a friend who has tall sons and the top of the tree now has lights and ornaments. It truly is beautiful.

My sister decided that we should have Christmas Day dinner at our house which meant we could have about 10 people here. I knew I needed some help with that many people coming and so I decided to have a simple supper of homemade clam chowder served in sour dough bread bowls, a fruit salad and pumpkin pie for dessert. Gradually, the number of people coming for dinner dwindled to six, which made things a lot simpler for me. Since part of our normal group of friends couldn't come for Christmas Day, Martha decided to have Mom and I to her house for dinner and then have the rest of the group later that evening for snacks. Christmas Eve Day, I was busy wrapping and getting what I could ready for the next day. By that night, I was exhausted and looking forward to the big day. We had a pleasant Christmas Eve with my sister and the rest of our little group of friends with good food and lots of gifts. I took Mom to see some of the Christmas lights around town after we left Martha's and we got home about 9:30 p.m. tired, but happy.

The next morning, though, was the beginning of my nightmare. After my shower, I got my pumpkin pie baked first thing in the morning. Then I got Mom's breakfast ready and the dog's breakfast ready and started preparing the clam chowder. Mom didn't get up until after 10 a.m. and I had the chowder well started by then. She seemed to take extra time getting ready that morning and by the time she got done, it was almost 11:30 a.m. As she ate breakfast, I finished the chowder and had all these dishes to do. I asked Mom to start the dishes for me. But she disappeared. She was in her bathroom and I thought she was having trouble, so I checked on her and she said she was doing fine. I started doing the dishes, knowing I still had the table to do, the bread bowls to get at Safeway, Mom had to wash her hair and put it up to dry, etc., etc. I washed and washed, had almost all the dishes washed, when I got worried again and checked on her. She said she was getting ready for our company. I replied it was much too early and asked again if she would please help me with the dishes. She finally came into the kitchen and started drying. I finished the dishes and asked her to get ready to wash her hair while I was gone. I raced to Safeway, got back home 30 minutes later only to find her holding the dog. As I put my groceries away, I asked her to get her shampoo and towel and I'd help her wash her hair. She absolutely refused. She hadn't washed her hair since Wednesday when Jill was here to do it for her. So I asked her to help me with the table. I asked her to get the leaf so we could have some extra room at the table and she brought out two folding chairs instead. We needed the chairs, but again, that's not what I asked. That's when I lost my temper and just couldn't talk to her for a while. She disappeared into her bedroom again and got ready while I got the bread bowls ready, stirred the clam chowder, decorated the table, and finally had time to get dressed myself. I was on the verge of tears. Not only was this day not turning out to be perfect as I had wanted so badly, it was turning out to be way more stressful than I had envisioned. So I kept singing "Away in a Manger" which seemed to calm my nerves quite a bit.

But I think the most hurtful thing all day was what my sister did.

The night before, I asked her if our friends were going to bring her to the house, in case she needed a ride since she can't drive yet because of her recent surgery. She replied that her friends were bringing her. I asked our guests to come about 5 p.m., so I was surprised when Martha and another friend of hers came to the door about 4:45 p.m. After Martha settled down a bit, I asked her where she had been. She said she had been at this friend's home since about 1 p.m. I couldn't believe it. I didn't say anything to her because I think I was so worn out that it really didn't dawn on me until today what she had done. Instead of spending Christmas Day here with her Mom and her sister, her only family, she chose to spend most of the day with a friend and her family. She offered no help and when she got here, she offered no help. She sat on her butt the whole time she was here. She did offer to wash dishes, but I declined because I knew she needed a ride back home and I wasn't going to take Martha home at that point.

Mom seemed angry the whole time our company was here. Martha seemed oblivious to that and just kept smiling at Mom. But when we opened more gifts, Mom's mood seemed to lighten up and she even liked the clam chowder, which turned out very tasty I might add, and the pie, which also turned out well.

Today, I cried at what Martha had done. I tried to make Martha's Christmas as pleasant as I could and this is what I get in return. Her friends and Mom and I all went together to get her a new TV so she would have a good choice of programs as she recuperated from her surgery instead of having to battle with her old one. I brought her over here for a visit. We got pizza for Christmas Eve and took it over to her house. I even got her two more gifts, plus stocking stuffers so she wouldn't feel bad not having anything to open on Christmas.

I feel like Martha just slapped me in the face. I don't understand how she can be so inconsiderate, especially with Mom as sick as she is. What's wrong with her? Or am I just expecting too much? I don't know. All I do know is that I'm hurt and so is Mom. And I wonder when Martha is going to grow up. She turns 50 in March, I think it's time.

And thank God for "Away in a Manger."

A Stranger in the House

When I was interviewed by the local agency on aging, they recommended that I accept respite care. Since I can do everything, at first I balked. But when Martha couldn't or wouldn't stay with Mom for a few hours every week and I realized I really did need a break, I finally agreed.

Jill is assigned to us and she is an angel. She and Mom warmed up to each other right away. Although Mom seems to think she stays too long (she comes to the house once a week for almost four hours), I believe that will eventually change. Mom lets Jill wash her hair and now prefers her to do it. She also let Jill do a manicure and pedicure and claims that Jill does it better than anyone.

I thank God for Jill and yet it's very difficult to have a stranger, or rather another stranger in the house, doing things for Mom that I feel like I should be doing. After all, I can do everything, right? Wrong. I get overburdened and stressed and my patience level drops quickly. So it's better if this "stranger" comes and helps Mom.

Jill and I also are getting to know each other well. She feels free to talk to me about what Mom tells her when I'm not in the house with them. They were looking at some photos the other day and Mom couldn't recognize my Grandma Dora, Mom's mother. That is the first time that I know of that she didn't recognize Grandma Dora. I cried when Jill told me that. But I made sure Jill knows that she must tell me what Mom does or says.

Mom is declining day by day, more rapidly than I expected. I notice little things that she does or doesn't do that hadn't occurred before. She can't prepare her own breakfast any longer. And I noticed that she chews her pills, so I give them to her one at a time and makes sure she swallows them. Her communication skills are very bad and getting worse and that is so frustrating for her. She knows the word, but she just can't get it out of her mouth. So we play this guessing game, with me trying to guess what she wants to say. Actually I'm getting pretty good at it.

Last night, she got up just as I was turning off my light and said there were people in her bedroom and she was frightened. I assured her that Gigi and I were the only ones in the house and she finally went back to bed, but she didn't remember anything this morning when I mentioned it. This may be the start of a wandering phase that many Alzheimer's patients go through. I hope not. She still is on Namenda and if that is slowing things down, I really would hate to see what it would be like without the drug. I wonder if it's helping at all, but there's no way to know for sure.

Martha asked if we should make another appointment with the neurologist and I said no because he can't help her. I don't think more medication is the answer and that's what he would recommend. He even admitted that he doesn't have much faith in the medications for Alzheimer's, so in reality, he can't do anything for Mom.

Sometimes I don't know how much more I can take. I know God is carrying me through this because He's the only One who could let me go through this. Sometimes I feel like I have the weight of the world on my shoulders, at least my world. And sometimes, I just don't want the responsibility. I want my Mom back. I want her to be my Mom again.

But I know I can't ever have her back again. God, I miss my Mom.

Declining day by day

I usually don't cry at every little thing Mom does or doesn't do, but today I cried.

Mom has declined to the point of not being able to comprehend how to make her oatmeal or toast, her breakfast that she has every day and has for countless years. So when she gets up every morning, I get her oatmeal ready and put it on the stove and put two pieces of bread in the toaster for her. I get her dishes and silverware out and put them exactly where she needs them and then I must supervise when she gets into the kitchen to get her breakfast. I must tell her to turn the stove on, not too high and tell her to put the bread down in the toaster and when to butter it. After her oatmeal is cooked, I must direct her to put it in her bowl, put some sugar on it and get her milk. I put her medications out in plain sight of her meal and then she is finally ready to sit down to eat. And before she gets done with her meal, I must ask her to take her pills. Every morning is the same routine.

However, this morning was a bit different. I prepared everything except putting the bread in the toaster. Then I went into my bedroom to do some last minute Christmas shopping on the computer. I heard her in the kitchen and then she came into the bedroom. I asked her if she had turned on the stove for the oatmeal and she had. I then told her that she needed to get some bread out and put it in the toaster and toast it. She said OK and returned to the kitchen.

I wasn't in the bedroom but about 20 minutes and when I got into the kitchen, I just couldn't believe it. There sat Mom with her oatmeal sure enough, but she had one piece of plain, UNtoasted bread sitting on a napkin with butter on it and a few bites taken out of it. The second piece of bread was on a plate, untoasted and smeared with oatmeal. I asked why she did that and she said she didn't know.

Then I began to cry. Mom got concerned and asked why I was crying and I just told her I was tired.

How could I tell her that I HATE seeing her like this. That I hate seeing her get worse almost every day. That I hate what this damned disease is doing to her. That I want to yell at God for letting my Mom get this horrible disease.

So folded laundry and tried to take my mind off it. I am really trying to quit trying to understand why Mom does what she does and how her mind is working now. It's a waste of time to try to understand and I don't think I'm supposed to understand. But sometimes, it's so difficult to cope with this. And it's like this every day, every single day.

And I continue to pray that God cradles Mom in His Arms and takes her home soon. Please God, hear my prayer.

New normal things

Since Mom can't quite make it to the bathroom any more when she's sleeping, she's been wearing disposable panties at night. My "old" Mom threw her used panties away every morning, but my "new" Mom is playing a game of hide and seek, with her hiding and me seeking.
If I don't see her dirty panties and throw them away, she hides them. But then when she wants to wear them again, she forgets where she has put them. So each day, when she's sleeping or eating or doing something where she can't see me, I try to find them. Most of the time I am successful, but sometimes I'm not. I've found dirty panties in her closet, tucked on top of some wash cloths in her linen closet, in the washer and various other places in and around her bedroom. But yesterday, my search surprised me. I was getting her some fresh panties before she got ready for bed and a dish towel seemed out of place to me. It was neatly folded and tucked away in the back of the linen closet. I reached to retrieve it and realized there was something inside it. Sure enough it was two pairs of dirty panties. I threw the panties in the trash and the towel in the washer.
When Mom does something like this that is totally out of the norm, I usually spend hours trying to understand why she does it. But I have learned with this disease that is a waste of my time. Mom simply does things I don't understand any more and I must accept it. This incident kinda takes the cake.
Is this a game she likes to play? Does she see how long she can hide her dirty panties waiting until I find them?
I don't think so.

I decided to change banks because our current bank is going to begin charging $10 a month for its "free" checking, so we joined a local credit union. Before we left to open new accounts for Mom and I, I had Mom practice signing her name several times. When we got to the bank, she did very well, with very little coaching. Only after sitting there for two hours did she forget how to spell her name and I had to coach her then letter by letter until she completed her name.

My sister came over for a visit yesterday afternoon and told Mom she is going in for major surgery on Monday. I thought Mom would be more upset than she appeared to be, but she wasn't. My sister will be in the hospital for about three days and then she'll go to a friend's house for a couple of days before going to her home. Her total recovery time will be from four to six weeks. I have known about her surgery for some time, but my sister didn't want to tell Mom until very close to her surgery so Mom wouldn't worry too much. I'll try to keep her mind off it.
This might be one reason Martha hasn't dealt well with Mom's illness. Martha has had her own health issues to deal with and couldn't deal with Mom's. Since she doesn't talk to me, I didn't know what she was going through, so I now understand a bit more how she reacted to Mom's illness.
And my prayers are always for my sister to heal both emotionally and physically.

Losing it

Last night was one of the worst nights I've since I've been taking care of Mom.
Usually, between 8 p.m. and 10 p.m., almost every night is my time to relax. I just like to sit with the dog on my lap and watch TV, whether there's anything worth watching or not. It's my time to just relax.
Almost every night Mom interrupts me about the time she's getting ready for bed looking for something she just can't find and is usually in plain sight. But I really don't mind, it usually only takes a minute to find what she needs.
But last night was different.
Mom walked into the living room and said she wanted to go shopping some day soon because she needed some things. I take great pains to make sure Mom doesn't need anything and so when she said this, I got upset with myself. I asked what she needed and she said she didn't know, but she needed things. I followed her into her bathroom and asked again what she needed. She faced me and rubbed her chest, like she was washing. I asked if she needed soap and she said yes. I got her two boxes of Dove from my bathroom and asked if she needed anything else. She nodded her head. Then pointed to an empty tissue box. I left her for maybe a minute to get a new tissue box and by the time I got back into her bathroom, she had opened one box of Dove and the other one was gone. I asked her where she put the other box, because I had asked her to put it in plain sight so she wouldn't forget where it was.
"Did you give me another box?" she said. I said yes and asked again where it was. "I've forgotten," she said. I started opening cupboards and drawers, looking for the soap and not finding it, I asked again and got the same reply.
That's when I lost my temper and just started yelling at her. Then I started sobbing. And I couldn't stop. The tears came in buckets and wouldn't, couldn't stop. I forget how many times I asked her for the soap and each time was the same reply. Then she asked why I was crying and I couldn't tell her. I couldn't form the words to tell her, because I didn't know myself at that point.
I finally found the soap, put it in her little basket and left her, still sobbing.
All of this over a stupid box of Dove soap.
But I couldn't stop crying. It wasn't my regular crying thing either, it was sobbing. My whole body sobbed.
I know I'm tired. It's been a month since I've had any type of break. And I know I'm so stressed about our financial situation. As bills come in I wonder how we're going to pay them all this month. I hate what this disease is doing to Mom and I want to fix it. But I can't fix it and it makes me feel so helpless. I feel like such a failure when I lose my temper, or cry, and I think that everything overwhelmed me at that moment and I had to let it all out.
I think I must have sobbed for at least a half hour. Mom came into the living room where I was sitting and held my hand and asked what was wrong. Finally I could catch my breath enough to tell her, that I hate this disease, I hate what it's doing to her, I feel like I'm not taking good care of her. She rubbed my back and said I was taking good care of her and that she's going to get worse. Then she started crying which made me feel even more guilty and made me cry harder. So we both cried for a while.
It's not that I don't thank God for every day I have with Mom. I really try to be thankful and grateful for every day He gives me. This particular time, I was simply overwhelmed. I guess I just had to let it out, whatever it is.
By the time I was actually able to talk, and wanted to call someone, everyone I know was in bed. I didn't get to sleep until almost midnight.
But today is a new day and I will try my best to take care of my Mom.

Giving thanks

Saturday I cooked one of our turkeys we received as gifts from two of my angel friends. Mom and I had good turkey dinners sent from the folks we were supposed to be with on Thanksgiving and it took us two days to eat them! So when we ran out of those, I cooked our own turkey.
And it made me sad.
On Friday, I made cranberry sauce. I had frozen cranberries the year before, so I just got them out of the freezer and made sauce. As Mom came through the kitchen, she paused to see what was on the stove. She studied them, really looked them over. I asked her if she knew what they were and she said she thought they were buttons. I said no, they were cranberries.
The smell of the roasting turkey filled the house on Saturday and made me think of Thanksgivings past. It made me think of our lives on the farm as we gathered to eat delicious rich food, starting with a shrimp cocktail in Fostoria cocktail glasses, and ending with pumpkin and mincemeat pies topped with mounds of whipped cream. We all sat at my Grandma Ida's big table with the family's china and silver, her house smelling so good it made our mouths water.
And in recent years, we invited our cousins from Lynnwood, Wash., a suburb north of Seattle. Before the big dinner day, Mom spent two days getting out the good china, washing every piece by hand and putting it back in the china cupboard until our special dinner. The white plates are ringed with gold and in the middle are some strands of wheat in gold. The whole set was brought from Japan when my uncle was there.
Mom also got out our family's silver and polished every piece by hand.
I loved making Thanksgiving dinner for everyone. I made my Auntie Em's rolls, pumpkin and mincemeat pies, mashed potatoes, and usually asparagus and I was in charge of the turkey and dressing. As I made the dressing, Mom volunteered to be the official "taster," making sure I put in enough salt and sage. Mom made cranberry sauce and jelly, the gravy and she always carved the turkey. We really made a good team in the kitchen.
Last year, she made all the cranberry stuff and I did everything else. This year, she couldn't do anything and didn't even offer to. I thought she was going to offer to carve the turkey when it came out of the oven, and I would've have declined her offer, but she didn't. She just sat down at her chair and waited to be served. That is SO NOT like my Mom. This stranger in our kitchen didn't even offer to taste the dressing as I made it. Again, not like my Mom.
So last night, after Mom went to bed, I cried. I am thankful to have another Thanksgiving with Mom. But I cried for losing my Mom. I cried because I know there won't be any more cooking together in the kitchen, no more tasting the dressing before I stuff the turkey and no more carving the turkey. There won't be any more helping her put the good china away after she so painstakingly hand washed each piece. I HATE what this disease is doing to her. It's taking my Mom away from me and I hate it.
I know I should be thankful for each day I have with Mom, but sometimes this feeling just overwhelms me. I am losing my Mom, little by little and there's not a damned thing I can do about it. I feel so helpless. I am used to just charging through life, fixing things. I want to fix this, but I know I can't.
Each day brings on another new challenge with Mom. Just when I think I've conquered all these negative feelings, they come roaring back like a big ol' lion.
God is so good to me and as I prayed last night and again this morning, I know He's walking right beside me and carrying me through this.
For that I am truly thankful.