The trip

The good thing about traveling with an Alzheimer's patient is that everything is new. The bad thing about traveling with an Alzheimer's patient is that everything is new.

We had a safe trip to Pacific City, Oregon, although it rained on us almost the whole way to our destination. We traveled along the Oregon Coast Highway, or U.S 101, which allows travelers to see magnificent views of the Pacific Ocean, the waves crashing against the rocky shores. Unless there's dense fog and then you can't see a darned thing. That was the case on this trip.

Being born and raised in Eastern Washington, it was always a real treat for us to go to the ocean. We always used to play this game of who could see the ocean first. Keeping an ever vigilant eye, my sister and I would try to beat each other at this game. On the way to Cannon Beach, we would always spot the ocean at about Ecola Park. But not on this day. We actually didn't see any ocean until we arrived at Pacific City and looked out our third floor window. We wouldn't have seen anything then but it was high tide and the waves were close to us.

Although Mom and I have visited Pacific City many times and stayed at the Inn at Cape Kiwanda, she couldn't remember, but thought the room was lovely and the view wonderful. That was my main goal - to let her have a memorable trip.

I helped Mom unpack. She is most comfortable with everything in its place in a chest of drawers, so I helped organize her clothing and hang up some of her clothes.

The next morning, we were greeted by bright sunshine all day long. It got a tad above 70 degrees, and it even got quite warm in our room, but we didn't care. We sat out on our lanai, watched all the beachcombers, dogs, campers and about a dozen surfer dudes all day long. Then we enjoyed a fabulous sunset. Mom seemed content, but had a little problem when she wanted to take the dog on a potty break. I told her I could watch her and she had gone for a little walk with me just a couple hours before. When several minutes had passed with no sign of the dog or Mom, I was just about at the door when there was a knock. It was Mom accompanied by one of the desk clerks. Mom became confused as she got to the lobby and finally asked the clerk for help. It was yet another lesson for me about what Mom can't do. And also another realization about how bad she's really getting.

I also got another wake-up call. I went into the bathroom and there was poop on the toilet seat. I was mortified because I thought I had done it. After washing it off, as I sat on the commode, I noticed poopy wads of toilet paper in the trash basket and realized Mom had done it. I asked her about it a few minutes later and she told me she just couldn't remember what to do with the paper. I told her it's just like home, so put dirty paper in the toilet, not the trash.

Another nice day put us in a traveling mood and so we went through Lincoln City and Depoe Bay to Otter Crest and the Devil's Punchbowl. Mom didn't remember any of the familiar places we had been so many times before, so as we travelled, I tried to jog her memory. Sometimes it worked and sometimes it didn't.

It was very windy at the Punchbowl, which made the waves on the incoming tide crash on the rocks below our vantage point. After we walked and peered over the fence to the rocks below, we decided to head back. As I started to back up, Mom asked me to go the other way. The parking area just makes a small circle so I asked what other way and she said many times, "You know, the other way where you can see the other side." I still don't know what she meant, but after we returned to the inn, she said it sure was a shame we didn't get to see the whole thing. Sigh.

Each night as she got ready for bed, I had to direct her which drawer held her pajamas, her undies and where her toothpaste was. And each morning, I had to show her where her clothes were and where the toothpaste was.

We were to stay four nights, but on our third morning, my little poodle had blood in her stool and we cancelled the rest of our trip and hurried home to the vet. Mom was very good, although I took over all the packing. We got home late this afternoon, after the vet said it was nothing serious and sent us home with medication.

After supper and dishes were done, I finally got to relax as Mom got ready for bed. She came in to say goodnight and a few minutes later, she came into the living room with a Macy's shopping bag. She sat it in front of me and pulled out a clean undershirt and a pair of socks. I asked what she was doing and all she said was, "This is all I had." I asked what else was in the bag and she pulled out several pairs of the disposable panties she wears every night. As she started to put them back in the bag, I said they don't belong in the bag and she became very defiant and told me they were going to stay in the bag if she wanted them there. And then I lost my temper. I grabbed the panties, yelled they were not going back in the bag, and proceeded to put them in their proper place so she can find them every night. Of course she got angry and then I felt guilty for yelling, but I was at the absolute end of my rope.

I wonder why she does these weird things at night? Is it some kind of cycle that folks with Alzheimer's go through?

Yet another lesson learned. And although this trip was for Mom, I did get to be at the beach and after Mom would go to bed and before she woke up, I did get some private time.

I don't know when or IF we'll get to the beach again, but at least I know Mom had a good time. And perhaps she'll remember it for a while.

Going to the beach

Preparing for a trip is always hard work. Making sure you pack everything, getting your vehicle ready to go, making sure you have cash in case someone doesn't take a debit card, etc. I usually make a list, but I threw the list away this time.

For Mom's 90th birthday, my two cousins from Seattle gave her a gift certificate to stay at her favorite place on the Oregon Coast. We wanted to go after school started and finally made reservations. My cousins gave Mom enough money for us to stay four nights, a real treat for us. At least I'm hoping it's going to be a treat. Right now I'm not sure how this is going to turn out.

Things began to deteriorate yesterday when I asked Mom to pick some clothes out to pack for the beach. She asked why and I told her we were leaving in a couple of days and she needed to begin to get ready, to see if anything she wanted to take needed washing, etc. She said she didn't know we were going to the beach. I tried to remind her, but nothing I said worked. She just didn't remember and thought I was making up a big story about making reservations a month ago. I finally convinced her to get her suitcase out and we got most of her clothing packed, except for pj's and undies. At least I felt like I accomplished something.

Today, I got our cash, washed and waxed the car (that she's still convinced is new) and filled up with gas. I told Mom exactly what I was going to do and then said she should finish packing. She asked where we were going and if we were leaving right away and I said we are going to the beach and no, not until the next day. She went into her bedroom to finish packing and when I walked in to see if I could help, she had a whole other suitcase she was packing. I asked her to put the other suitcase away and that we could put everything in the one suitcase.

Then she said if it's raining she didn't really want to go. OK, this is the Pacific Northwest and we have rain here. I asked if she wanted to go at all and she said yes, and I said then we're going, period.

I love the ocean. I want this to not only be Mom's vacation, but I want a little vacation too. I haven't been to the ocean in three years and I can almost hear the surf and see the waves as I write this.

But I am such a control freak. I like to plan every single thing and God is teaching me, and being very patient I might add, that I can't possibly control everything. This is a very difficult lesson for me to learn, but I am slowly learning. God and Mom are teaching me.

And when we get to the beach, I will try very hard to go with the flow and be in the moment and enjoy every moment I have with Mom. Because this might be our last beach trip together, I never know. I hope it won't be, but it could be. My main objective is that Mom enjoys every moment at the beach and that she remembers this trip as a pleasant one. That's my goal.

No break today

Always expect the unexpected. That is what I'm learning.

Today I was supposed to get a few hours to myself. The rain had let up and it was a pleasant afternoon. Martha had actually asked Mom to come over to her house, so Mom was ready to go a little after 1 p.m. After we got in the car and she commented again on my "new" car, I told Mom that I was going to drop her off at Martha's and then go get a cup of coffee and take a little drive. Then Mom get that look on her face.

Every child knows this look. It's the "Well, if I have to," look. I asked Mom if that was OK and she said no, it wasn't OK. She wanted me there with her.

I had counted on this time to myself. I had been looking forward to it for a couple of days. I didn't have anything special planned except getting an iced coffee drink at one of my favorite spots and then just taking a little drive. So instead of time to myself, I drove over to my sister's and stayed there with Mom. On the way over there, I almost cried. I just had counted on it so.

My sister was surprised when I said I was staying and offered no help at all. She did take Mom for a walk and then I went to get my coffee, so I guess I got about 15 minutes. As Mom and Martha were walking away, Mom turned to me and asked if I'd be right back. I assured I would and I was waiting when they returned to my sister's house. And next weekend, Martha is gone to the beach, so I won't get a break then either. I don't want to be selfish, but I'm finding I really need this time to myself. But Mom was really clingy today and I don't know why.

I'm thinking she doesn't feel comfortable at Martha's house. It's not that my sister's house isn't comfortable, but I think Mom feels better in her own surroundings. I might have to negotiate with Martha so she will come over here. And Martha needs to come over more often. Most of the time Mom can't remember Martha's name and one of these days, she won't remember Martha. But Martha doesn't seem to realize how bad Mom is. I suppose Martha will have to deal with that at some point.

I think I'm just tired.

Cataracts

Mom went to the eye doctor today. She hadn't been to him in a little over a year, and since she developed cataracts, he likes to check her annually.

We got into my car and she said, "Is this your new car?" She has been on this kick for a few days now. Some how she believes that I have a new vehicle. I always say, no, it's same one I've had for the last 13 years. I can't figure out what changed in her mind, but she swears that I have a different rig.

I carry Mom's walker in the car so it's available when we need it. It made me feel sad to get it out today and watch her use it, but I am also thankful that she doesn't fight me about using it, at least not yet. She didn't say a word when I got it out of the car - she just stepped right up to it and walked.

At the doctor's office, he patiently examined Mom. I had filled out an update form and had to indicate that she was diagnosed with Alzheimer's which just about killed me. The doctor said the cataracts were bad enough that Mom might want to consider surgery. He said perhaps she could read a bit better after the surgery. He said the local hospital has state-of-the-art equipment for cataract surgery and recommended a doctor who is trained on the new equipment. He said to discuss it and let him know. I hesitated mainly because of Mom's age. It's a risky procedure, as all surgeries are. But he also said we could wait a year and it wouldn't make any difference. So, I'll discuss it with my sister and see what she says.

Mom used to be a voracious reader. She not only read the paper every day, but she devoured books. Then she just lost interest in reading altogether. Of course the print on the newspaper is so small I can hardly read it any more, but when my sister brought over some large print books, Mom would look at it and then put it down. So I wonder if she just can't comprehend enough to enjoy reading any more. She does glance through our hometown newspaper every week, but then after she knows I've read it, she asks me if I noticed anything in the paper.

After the appointment, as I started the car, Mom asked, "Now who does this belong to?"
I give up.

Feeling guilty

Today I had my second real break. I took Mom to my sister's house a little before 2 p.m. and dropped her off. I told Mom I was taking a drive and would be back in a little while.

As I pulled out of my sister's, I felt so tired. I drove toward home and instead of going anywhere today, a lovely fall day, I decided to just go home. It was the right decision, but I felt guilty.

It was so nice and peaceful here at home. No one coming into the room while I'm on the computer to demand I get something done right now. Not even a little dog who wanted to be held. So I played on the computer, watched a John Denver special on OPB, took a short nap and read.

Close to two hours of doing this, I began to feel guilty. I was ashamed that I wanted to just be alone for a while. I know I won't have Mom forever and I don't want to think about what life will be like without her. And I love her more than I can say. And I love my little adorable poodle. It's just that I really needed a break I guess. And maybe I shouldn't feel guilty about this, but I did.

Tonight things are back to normal. Mom is in the living room watching a special about Big Band music and really enjoying it. The dog is on her lap after I told her I wouldn't hold her any more. And I'm listening for any movement just in case Mom gets up and starts wandering.

And I'm already looking forward to a break next weekend.

When Mom feels sick

Mom woke me up last night and said she wasn't feeling well. Immediately I pictured a trip to the Emergency Room, which we've done several times with Mom. I asked what was wrong and because she can't communicate very well, she really couldn't tell me. So I had to play 20 questions.
Is it your tummy?
Yes.
Is it a sharp pain?
No.
Does your tummy feel puffy?
Yes.
Can I get you anything?
No.
She sat in her chair for a while and said she was feeling better. She went back to bed without any more complaint.
However, I spent the night wondering if she'd be alright the next morning or if she would get me up again and want to go to the doctor.
At 90 years old, you just never know what might be going on with Mom. Physically she's been pretty good, but I always worry when she says she's not feeling well. All night I listened for her breathing. I checked on her and heard her breathe just fine.
She woke up with no pain and had a good day today. She ate very well although I didn't let her eat anything too rich.
And then I realized what the culprit might have been - chocolate chip cookies. I think she made one too many trips to the cookie jar. Guess I'll have to put a lock on the cookie jar or be the cookie cop.

A good day

I feel like I've been whining a lot lately, so I want to make note of a good day, actually a couple of good days in a row, which I am very thankful for.

Mom was in her element yesterday. She cleaned. Although I have taken over most of the household chores now, yesterday Mom dusted. I had to show her where the Swiffer was and put a new one on the little wand for her, but then she dusted and it was like I had my "old" Mom back again. She dusted the whole house I think and enjoyed every minute.

I like to see her doing something she knows contributes to the household because I think sometimes she feels pretty useless.

Then she was so exhausted she had to sit down for a rest which usually means a nap.

And as she napped, I baked some bread. That's a good therapy too, especially if it's the kind of bread you must knead. I can take out all my frustrations on that small pile of dough and know that it's good for the dough! By the time Mom woke up, the bread was out of the oven and we could share some warm bread with melted butter on it.

And I thank God for every good day.

Wandering and having a nice afternoon

Another symptom of Alzheimer's is the victim wandering and not knowing what they are wandering for or wandering to. I hoped to avoid this with Mom, but I don't think I'm going to be that lucky.

The other night, less than an hour after I had fallen asleep, my little poodle made a sudden movement. Since she sleeps next to me, I felt her and woke up with a start. Standing right in front of me was Mom.

I asked her what was wrong and she said she heard a very loud noise. I told her I hadn't heard anything and the dog had not reacted to anything, but she insisted she was awakened by some loud noise. I tried to convince her otherwise, but she wouldn't listen and decided to check all the locks on both doors and walk around the inside of the house to make sure everything was alright.

The next morning, she didn't remember a thing. This is another new normal.

This afternoon, my sister actually came over to be with Mom while I got out of the house for a couple of hours. I went to Lowe's and as I was racing around trying to find items on my list, I realized I could actually take my time, something I couldn't normally do. And I did. I also got a blended coffee drink that really hit the spot and then went for a drive and ended up at a park that overlooks the Columbia River. As I watched the boats and sipped on my drink, I called a good friend and chatted with her for an hour and a half. It was glorious. I think I was gone for almost four hours and I realize I need to do that more often. So every weekend, my sister will come here or I will drop Mom and the dog off at my sister's and I will get some time all to myself. Yep, I felt guilty not being with Mom. But I also realize that I need time to do some things I wouldn't ordinarily do. And it felt good.

Expect the unexpected

We were invited to a friend's birthday party last night. Mom was doing very well, even actually remembering that we were going (after I reminded her). She picked out which clothes she wanted to wear and asked my opinion about them. She washed her hair (which I have to ask her to do or she won't do it).

While she was resting, I felt comfortable enough to make a quick trip to the store to pick up a gift and some extra ingredients for the potato salad I volunteered to make.

When I returned from my trip, everything was going well. I made my salad, got the dog ready to go and Mom said she was going to take a shower. I reminded her what time we needed to leave and told her how much time she had and then I ran through the shower myself.

I just finished dressing, and noticed I had enough time to gather everything and everyone into the car, when Mom appeared in her bedroom door with only her panties on. I was dumbfounded and asked what was going on, that we only had about five minutes before we should leave.

"I made a mess," she said. So I followed her into her bedroom thinking that she had a bad experience on the toilet. "I just kept turning around and around in my bathroom and I didn't know what to do," she said. "I finally got into the shower and washed. But now I don't know what else to do."

Gently I guided her through getting dressed, putting her shoes on and combing her hair. She changed her mind about what to wear and finally seemed satisfied about her choice.

Now I am the type of person who HATES to be late for anything. And although I was chomping at the bit to leave, I knew this was one of those times that my support group buddy would remind me to, "Expect the unexpected." And although we were about a half hour late, it really wasn't that big of a deal.

I worried about Mom all night at the party, but she had a really good time. She ate really well and even visited a little. Since she's so hard of hearing (and refuses to get a hearing aid), visiting isn't easy for her, but she did very well. She really hasn't socialized much since her diagnosis in April, so this was good for her.

Without my support group system though, I think I would already be crazy or at least drinking heavily. My friends and the support group I attend are helping tremendously. I thank God for them.

And this is yet another reminder that I must be more conscious of how bad Mom is and that our lives seem to be changing every single day.