Finding my underwear

Several friends have told me that I must keep my sense of humor about Mom having Alzheimer's. I have found that to be very difficult, but this incident requires a good laugh if not just a smile.

Since Mom has gotten so bad, I have taken over the laundry duties up to folding the clothes. After a load gets done in the dryer, Mom wants to fold the laundry, and I want her to feel as useful as possible, so I just leave her alone, she doesn't want me to hover, and she takes as long as she likes as she folds and puts everything away. Although I need to rearrange things every once in a while, she had been doing very well until yesterday.

I couldn't find my undies. I looked in every drawer that I could imagine and I still couldn't find them. She has put some of my things in her drawers in the past, so I went into her bedroom and searched through every drawer in her dresser, still not finding my lost laundry (and realizing I have to clean out her drawers - it's no wonder she complains about not finding anything).

Finally I give up and begin to go through my drawers again and UREKA! There are several pairs of panties neatly tucked under some undershirts in a drawer directly under my usual stash. I laughed and placed them in their proper place. And when I quit laughing, I became sad. My "old" Mom never would have done that. She taught us to always keep our dresser drawers tidy. My "new" Mom is kind of doing the same thing, only she has several sock and underwear drawers now and her undergarments seem to be scattered everywhere.

For the first time this morning, too, I looked at Mom as she was eating her breakfast and thought, "Who is this person?" She's not really my Mom, although she looks like her. But when she looks at me, I don't see my Mom any more. I don't see Mom when I look into her eyes. I see this stranger who is in my Mom's body.

I guess it's time to get to know her.

Another sad day

Something happened that made me sad today.

I made an appointment for Mom to get her toenails clipped last week. I know I must tell her several times about any appointment, so I told her several times yesterday and right before she went to bed I reminded her about getting up a little earlier than usual for her appointment.

Mom had been going to this woman for quite a few years, so she is no stranger to her. She sees her about every 6 weeks or so and she is in the same building as Mom's hair stylist, so everything is very familiar to Mom - or I should say it should be familiar.

I had a bad feeling when we pulled into the parking lot and Mom asked if she was getting her hair done again. I replied no, she was getting her toenails done today.

I had a check made out for Mom to give to the manicurist and gave it to her as she got out of the car. I decided to wait for Mom because I knew it wouldn't take her very long and as she walked up the few steps to the manicurist, she immediately tried to go into her hair stylist's salon. I was parked very close and yelled that she was seeing Toni today, not doing her hair. I was just about to get out of the car when she stopped at another salon that had the door open and the woman inside directed her to the right place.

After about a half hour, here comes Mom with the manicurist as an escort. As Mom walked around to the other side of the car, Toni came over to me and said Mom didn't know her. She said Mom walked by her salon and paused, saying she had a check for Toni. "I'm Toni," she said, but Mom didn't believe her. Eventually she convinced Mom was where she was supposed to be.

Bless her heart, Toni said I could call her if I ever needed to talk. And I do need to talk and I thank God for all the offers of help and support.

But this made me sad. Even with the increased dose of Namenda, Mom doesn't seem to be holding her own. I guess I was just hoping that she would be on a level field for a while and maybe this was just a little setback. I hope so.

Still it makes me sad to see Mom like this because I remember the strong woman who stood up to her in-laws and my Dad when she needed to. I remember after my Dad died how strong she was, even in the face of in-laws who wouldn't help her in her time of need. I remember all the hard work she did and how she never once complained about it, she just did it because it needed to be done.

Because of all these memories, this time in her life makes me sad. Sometimes I think I just can't take it.

Paranoia

One of the effects of Alzheimer's is paranoia, which I thought Mom could avoid, but she proved me wrong.

Yesterday she took the dog outside first thing. When she tried to open the front door, it stuck as it sometimes does and I heard it so I opened the door for her.

Last night, after I got ready for bed, I noticed she was sitting up with the dog in her lap which is unusual. I asked her what was up and she said she had a few questions for me.

"Why did you lock me out of the house this morning?" she asked.

I was dumbfounded, and besides being tired and at 10:30 at night, I couldn't figure out what she meant.

She said, "When I tried to open the door this morning it was locked." I told her it was not locked, that it just got stuck and that's why I opened it for her.

"I know you locked the door," she said over and over again, and no matter how I tried to convince her I would NEVER lock her out of the house, she insisted I had. Finally I realized it was an argument I could never win.

I felt so sad to think that my Mom would even consider that I locked her out of the house. But it's another new normal for me. A few minutes later, after she was ready for bed, she acted as though she didn't even remember our conversation about the locked door. She probably didn't. That's one of the few good things about Alzheimer's - she forgets when we argue.

I went to Mass again this morning. It felt so good again. But this morning I was more prepared. Just in case Mom decided to rise early, I got her oatmeal ready and the toast in the toaster, so she could at least fix toast for breakfast and when I got home I could fix her oatmeal. Of course since I was prepared, she hadn't gotten up early and was barely out of bed by the time I got home from Mass. Like my good friend said, "Be prepared for anything."

I'm trying.

Mom's memory

Today Mom got a perm. It takes about two-and-a-half hours to get it done and by the time we got home and I got her lunch fixed, she was exhausted.

Alzheimer's is a funny disease. I've researched and read and read about it, but nothing really prepares me for what Mom does or how she is reacting to this disease.

My sister came over for one of her hour-long visits this afternoon after we had gotten home from the perm and she asked Mom if she was wearing the same top she wore to get her hair done. Mom responded immediately, which surprised me because I thought she wouldn't remember. However, she told my sister that she had three or four shirts just like the one she was wearing. And she had gotten them when she went to school. I wasn't quite sure what she meant, so I asked her what school. She said the school in Spokane. She graduated from Lewis and Clark High School in Spokane in about 1938.

I think it's interesting how her mind connected a shirt she is wearing in 2010 with clothing she wore when she went to high school 72 years ago. I want to know but of course I never will. I had to turn away so she and my sister wouldn't see my tears.

And on our way to the hair salon, everything was new to her. All the flowers in the neighbors' yards, the trees, business signs, they were all like she had never seen them before. I guess that's the one positive thing about this disease -- that everything seems new.

As I think about Mom's past behavior and look for signs of when this disease began, I remember going to the Oregon Coast (Pacific City is one of our favorite spots) about three years ago. As we traveled along the Columbia River on Oregon's border, Mom asked what all that water was. I just couldn't believe she couldn't remember the Columbia River, so I reminded her where we were going and what river it is. She just shrugged it off and said she had forgotten. But that was one of the signs that this disease was raising its ugly head.

It seems I've been in denial a long time. I just didn't want to see that something might be happening to the woman who had been my Rock all my life. I know I shrugged it off as old age. But it wasn't.

We're going to make another trip to the Oregon Coast the end of September, thanks to a generous gift from my evil cousins. I must remember to be prepared for anything and that all of that scenery we've seen about 85,000 times will be new to Mom. And as I learn to look at things through her eyes, it will be new to me too. That will make the trip even more special.

Mom's bathroom

This is another new normal for me.

I never go into Mom's bathroom unless it's to vacuum. Mom's usual morning ritual has always been after breakfast she cleans her bathroom. I thought she has been doing that all along, but I was wrong.

Last night, she came into the living room and asked me where her toothbrush was. I had no idea, so I went in her bathroom. As I started looking over the counter and in the cupboards, what I discovered was dirt and just a plain mess. I was shocked.

In her "other" life, Mom was so clean you could eat off the floor. And the bathroom was always spotless. I'm not going into detail here, but let's just say that there were dust bunnies where there's never been before and I won't even say anything about the toilet. This is so not like my Mom. It's just another thing I've got to get used to.

Mom insisted I buy her a plain toothbrush a while back, so I bought her two. She has one of those nice Sonic toothbrushes, but for some reason, she's decided not to use it. However, last night, when I couldn't locate any toothbrushes, I asked her about her electric one. She acted as though she hadn't seen it before and I think she actually used it.

And she says now that she's afraid of the shower, so every night I have to ask her if she is taking a shower. Sometimes I think she lies to me, just so I won't say any more to her. And she hates to wash her hair. Today I had to ask her several times to wash her hair and she finally did. But it's like she's a small child, because she procrastinates until some days it's too late for her to wash it. She's got lovely, thick hair that takes a long time to dry, so if it gets too late in the day, she has to wait until the next day to wash it. That was what she wanted to do today, but I wouldn't let her procrastinate.

Now I know why God didn't give me children. I wouldn't be a good parent at all.

I keep praying Mom won't get too much worse and before she does I hope the Good Lord cradles her in His arms and takes her home. And when I pray this, I cry.

Selling Mom's car

Today we sold Mom's car.
Mom took it better than I did.
It was out of necessity mostly because we just couldn't keep paying the insurance and maintenance on two vehicles. And I feel selfish not wanting to give up my own rig, but I just couldn't. I still feel selfish.

A very nice couple from here bought it and I believe they will appreciate the car as we did. As they drove away, Mom said, "We sure had a lot of fun in that car, didn't we?" It was one of her clearer moments.
The first major trip we took in Mom's car was to Big Fork, Montana. Not everyone knows where Big Fork is, but we had been to Flathead Lake in Montana several times and Big Fork is nestled on the northern edge of the lake. It's really an artsy little town that boasts several galleries and good food. But more important, it's right in the middle of lots of destinations such as Glacier Park, Kalispell, White Fish and Polson. We spent 10 glorious days there and had a blast. We shopped and shopped, and saw buffalo and even some Amish folks bouncing along a Montana backroad in a horse and buggy. Mom still has glimpses of that trip and today was one of those.
We put less than 20,000 miles on the car since we bought it six years ago. But it's traveled several times to Eastern Washington, Seattle, Tillamook, Pacific City, Lincoln City, Depoe Bay and Long Beach. Mom will always have fond memories of that car, the last car she owned. I guess that's the important thing. I think as long as we created those memories for her with the car, that's enough for her.
Me, on the other hand, hates to see it go because it's admitting yet another failure on my part to provide for Mom. I feel like because I can't pay my share of the bills like I have in the past, I have failed. I try to make it up to Mom by cooking her meals and taking care of her the best way I know how. But I still feel like a failure.
I asked Mom if she was sad to see the car go and she said no, that it was time to let it go since she couldn't drive it any longer. She watched it as it disappeared down the road with very little emotion. I cried.

Forgetting simple things

This morning I decided to go to Mass. I hadn't been in months and months and since this was Assumption, it was a perfect day to go. I don't particularly like the actual church I go to, but today I felt very thankful God allowed me to go to Mass and I dedicated my prayers to Mom. After Communion, I felt so thankful to God, I cried. Tears came easily and although I felt a little embarrassed by shedding tears in front of my fellow church goers, I shed them all the same. And as I drove home, I felt so good. But that didn't last long.

When I arrived home, I discovered Mom had gotten up just after I left. She hadn't gotten out of bed before 10 a.m. for more than a week, but this morning of all mornings, she decided to get up early. She was just finishing breakfast when I walked in the door and it wasn't her usual breakfast - just toast and a small glass of milk. I asked her why she didn't fix her oatmeal and she said she was afraid she wouldn't do it right. I walked into the kitchen and she had dropped a bunch of wooden toothpicks on the floor. I'm finding toothpicks everywhere nowadays. On the table, by her chair in the living room, on any kitchen counter. I picked the toothpicks up off the kitchen floor and asked Mom to be careful not to drop them. When I started to make toast for my own breakfast, I discovered there was no butter in the butter dish. I asked Mom what happened to the butter and she got defensive and said "I guess we ate it." I asked her why she didn't get some butter out of the fridge and she didn't answer. This is when she pretends not to hear a word I'm saying. I asked if she just had dry toast and she finally admitted she did. I felt so bad. Now I feel like I can't leave at all because she can't even remember where the butter is. This is just part of the "new normal" I must get used to. We prepared her oatmeal later in the day when she got hungry.

Wonder if I want to go to Mass again? Do I dare leave Mom on her own? Wonder if she wants to make her oatmeal after all and leaves the burner on high? Maybe I should just sneak out of the house from now on.

Additional burdens

When I quit my job in January to be with Mom, I had no idea what I was in for. Not only caring for Mom, but the financial worries that comes with this.

I have been trying to get a job working from home to no avail. I simply cannot leave Mom, even for an hour. The only place I go any more is to the grocery store and I hit the store running between 7:30 to 8:30 a.m. armed with a list. I fly through the store and am in the checkout line in 30 minutes and home in less than an hour. By that time, Mom is usually thinking about getting up and I am safe to unload the car and put away the groceries. If I wait any later in the day, Mom gets worried and has paced up and down the street looking for me. Or she decides to go out in the backyard with the dog just to look things over. She often says I've been gone a "long time" and asks where I was, even though I gently wake her before I leave, put the dog on the bed with her and tell her where I'm going.

I've gone online to look for work from home, but almost all of them sound like scams of some sort.

My entire savings is gone, which wasn't much, but it got me through the first six months of this year. And now Mom's savings is depleted and I don't know where to turn. That's partly why we have Mom's car for sale - not only can't we afford the insurance and maintenance on her car, but we just plain need the money. We've been trying to live on Mom's Social Security check, but that just isn't working.

I asked my sister for another loan, but she said she's had added expenses this month and may not be able to afford to help us out. She suggested Mom try to go on food stamps. Isn't that for really poor people? Oh, wait, I guess we fall into that category now! I hate the idea of going on food stamps. I was raised by two hard working parents who believed that hard work pays off and you earn your own way.

I know President Obama signed a bill recently to make sure caregivers of veterans get paid and I sure wish he would sign a bill similar to that for my type of giving care. I don't want to get involved with the state because they want all of Mom's assets and since she has her home and her farm land, I don't want the state thinking they could claim any of it. I think we live pretty tight as it is. Our only real luxury is when we go to Wendy's for hamburgers and now we can't even do that.

So I keep praying and praying and praying and I know God will take care of us. And if He's trying to teach me patience, He's doing a great job!

But we can't pay a couple of bills. And I know we'll need more groceries before Mom gets her next check in September and her meds need refilled and she needs a perm and two big insurance payments must be made. The word stress doesn't even begin to cover it.

In the meantime, all the added stress is going straight to my back. The muscles beneath my shoulders cramp and can be miserable. Ibuprofen helps. Or maybe I just need a stiff drink that will knock me out for a while. Trouble is, I don't drink, so to knock me out, it wouldn't even have to be a stiff one.

I did do something for myself today. I went to see "Eat Pray Love." I am reading the book and it's a good movie. I haven't been in a movie theatre for three years and had some gift cards so I could go to the show and even have popcorn. I've also been reading more, something besides information about Alzheimer's.

I took Mom to my sister's when I went to the movie. When I returned, Mom didn't say much. I asked if something was wrong and Mom said, "You didn't tell me you were leaving. You just left me here." That's enough to tear my heart out.

Second visit to the neurologist

August 12, 2010

Early this morning we went to see the neurologist for the second time. Her first appointment was only April 26. They put Mom through some tests, such as drawing a clock, naming different items on a suit, writing down a sentence, asking who the President is, what day it is, what month, etc. Mom could answer very few of the questions. It makes me so sad. When she asked how I was doing during the appointment, I told her truthfully that I wanted to cry. The doctor didn't spend much time with us but asked me pointed questions about her behavior. He said the tests indicated there wasn't much change, but he would trust my observations more than the tests. He said that we should try increasing the dose of Namenda to 10 mg twice a day and if Mom is still going downhill fast, then perhaps we should try Aricept. I told him I didn't expect her to get this bad this fast and he said it can happen this fast and could continue to do so. He wants to see Mom again in two months to assess how the Namenda is doing. Hence my wanting to cry. I HATE this.

And of course my sister was absolutely NO help at all. One of the test questions asked to list four animals that begin with "S." The example they gave was "Shark." Mom couldn't name one animal. And instead of acknowledging that Mom couldn't name one animal, my sister told me that the example was a poor one and they should have something else. I responded that I couldn't help it and she became snippy and said she knew that. I told her to take it up with the doctor and don't talk to me about it. I wish she hadn't come. She is more of a burden than any kind of help. Then when we got home, she claimed that the nurse didn't give Mom enough points from the test. I told her that it didn't really matter and she replied, "Well, it would have made me feel better." Really? It's all about my sister and her feelings, never mind anyone else's.

Mom took the whole thing in stride. She just enjoyed getting out of the house and seeing different scenery. I also took her walker. I didn't ask her, I just loaded it in the car and unloaded it when we got out. She got along so well with it, I couldn't believe it. There's more than one way to outsmart an old woman!! My Momma didn't raise no dummy!

The next hurdle is selling Mom's car. When I decided to post it on Craigslist and in The Nickel classifieds, I cried. Mom loved that car. She'd wanted a Toyota Camry for so long and when she finally got one, she took such pride in driving it. She named it "CC" for "Comfortable Car." I told her how I hated to sell it and now she can't remember naming it and can't remember ever wanting it. She said, as I was crying, "Sally, it's just a car." That made me cry even more. Because she got the point and I wasn't getting it at all.

Thanks to all my dear friends who have responded to this blog. I appreciate all the thoughts and prayers. This is very therapeutic for me and I may have to call on you more than once to cry or vent my anger or just chat. Thanks just isn't the right word. How about Muchas Gracias.

Tears today

August 11, 2010
Mom cried today. She doesn't cry often, but when she does, it breaks my heart. She began crying after she asked about a walker in the trunk of the car. I said she had never used it and I sure wish she would. It would be perfect for her to go shopping at Fred Meyer. It has a basket and a seat, so if she gets tired of walking, she could sit down. She also has a new walker that she hasn't taken out of the house yet, but the doctor insists she needs. After I explained all this to her, she cried. Ok, not just cried, she bawled. Loud. When I asked her what was wrong, she sobbed, "I'm just sad." That's when my heart broke and I had to walk away to hide my own tears.
And it was a battle to get her to wash her hair. She kept putting it off, saying she couldn't find her shampoo and she couldn't find her towel and she had to give the dog some water until finally I said, "Mom, please just wash your hair." She laughed and finally did. This is not something my "normal" Mom would do. But as one friend said, "This is your new normal."
I'm still getting used to the new normal. Perhaps I never will get used to it. Another wise friend said, "Sally, be prepared for anything." That's part of the new normal too.

And I'm dreading what tomorrow may bring. Mom has an appointment with the neurologist early tomorrow morning and I just don't want to hear what he has to say. I'm afraid. I know that I should have more faith than that, but I'm still afraid. I'm afraid that he might confirm my fears, that Mom is getting much worse and might need even more medication. What is that medication doing to her body? It doesn't seem to be slowing down the progression of the Alzheimer's. At least not much. I wish someone would tell me what to do and I would know that it was the right thing. I should just listen to God and I try but that's just difficult. I wish His voice would be louder, but it isn't. At least not to me. I will be interested to see my sister's reaction to all this since she wouldn't go to the first neurologist appointment in April. She is not acknowledging that Mom is as bad as she is. I think she's in deep denial. Which I was for quite a while, but looking back on the last five years or so, I can see that Mom was gradually showing signs of this awful disease. And I suspect that my Grandma Dora had it as well, but she was never diagnosed. I don't think any of Grandma Dora's sisters or brothers had it, but they've all passed away because of other health issues.

And so I keep praying and talking to people and reading about this disease that's stealing my Mom away from me.

Today's addition

Just a footnote about why I named the blog "My Mom the Stranger." It's because she is. She is in my Mom's body and once in a while I get a glimpse of my Mom, but for the most part, I deal with this stranger every day. She does things my Mom would never do. Like not being clean about her hygiene, and insisting on putting dirty clothes in the dryer instead of the washer or making me wash clothes that I put in the dryer because she thinks they aren't clean or not washing her hair. The list goes on and on and gets bigger daily. And I also am becoming the parent now with Mom acting as the child. So I'm trying to get to know this stranger, but it isn't easy because I keep believing she's my Mom. And she isn't.

August 10, 2010

I've never done a blog before, but I want to begin this because I know there's got to other daughters and sons out there experiencing the same things I am.
My Mom, Wilma, who turned 90 years old this year, was diagnosed with Alzheimer's on April 26, 2010. That date is burned into my memory. Since her diagnosis, she has been taking Namenda, and for a few weeks, I could see an improvement. But for the last month, she's gotten worse. We have an appointment with a neurologist on Thursday, Aug. 12.
I began to write down what I was thinking in January when I quit my job. I was thinking about a blog then, but I was so caught up in taking Mom to appointments and dealing with my sister who doesn't want to admit Mom is sick or offers to help, that I just didn't do it until today.
Please write down your thoughts for me. Tell me if I'm losing my mind. all I want to do is be a good daughter and give Mom the best care I can possibly give. And most of the time, I feel like I don't.
So here goes.

Monday, January 11, 2010

Mom is worse today. I had to guide her about making her oatmeal this morning. She had made her toast but hadn't started her oatmeal yet, so I had to tell her to get the pan, get the oatmeal, get the measuring cups, sugar, etc. Sigh. It's so hard to realize that this woman who has been such a rock in my life is no longer that rock. Now I am the parent and she is the child. Once in a while, Mom will shine through all that haze, but not very often.

Today was a weird day. I actually had to rethink my whole day because it was the first day I didn't go to work. 

Tuesday, August 10, 2010

Today is the first day Mom couldn't remember my name. She had to ask me what my name is. I feel like this is a milestone that is marked by how bad she is really getting. She can't remember Martha's name (she is my only sister) half the time, but that's because Martha isn't spending much time with her. 

Mom also picked some strawberries today. Most of them were rotten and I had to throw them away. This is only the second time she has attempted to pick them, and that's good that she even gets into the garden. The only time she goes outside any more is when she takes the dog out.

She's having a difficult day. I had to physically help her get her breakfast, the second day for this. She couldn't recognize what toast was. Yesterday she put her toast on a cereal bowl instead of a plate. But each morning, step by step, I must tell her what to do. I admit some mornings I just want to do it myself. It would be easier. But I figure as long as she's able to fix her breakfast, she should. I think it's good for her and it makes her feel a little useful.

This is the most difficult job I've ever had. I guess that's my mantra for now.

And I keep praying that God will take her home before she gets too bad. I just don't think I could take it if she got as bad as Maxine (Mom's best friend who recently dies from Alzheimer's) was. I think my heart would literally break.

And the financial worries are just overwhelming. I just hope we can get Mom's car sold before the end of the month or we're going to be in a world of hurt. I try to not let it bother me, but evidently it is because the muscles in my back are killing me. Not so bad today as yesterday, but I had to get up about 4 a.m. and take some ibuprofen. It's still cramping a little and usually that's where all my stress goes.