The Water Gets Deeper

My apologies in advance for the lengthy post.

The week before Mom’s dilemma was filled with sad events.

On Wednesday the 13th, my close friend’s father died. On Thursday, Angel’s husband’s grandmother died. On Friday Two Feather’s uncle died, and we were told Two’s dad would be going in for heart surgery this past Friday. All of which we should have been there to show our respect and none of which we could be there for. All this while I was dealing with Mom scratching herself raw, it snowed and iced again and I couldn’t get off Mom’s hill. So excuse me if the later part of my post shows my intolerance of unthinking people and my post is a week later due to all that’s been going on. My rant is marked, so you may skip over that and get onto the other reading without hurting your eyes.

Well…just like I thought—it was not scabies!

When I got Mom up that Friday morning, the bumps were still there and Mom was still just as itchy as she had been. The Permethrin did nothing to take either the itch or bumps away. So we know for sure it wasn’t scabies. I got Mom in the shower, washed her thoroughly, and dowsed her and myself with the cream a second time, just to be on the safe side. One treatment is supposed to treat and eliminate the itching and bumps for scabies. Two treatments couldn’t hurt. I called the day care to talk with the nurse to make sure the note from the doctor was satisfactory for Mom to return on Monday, and she said yes because Mom was treated. She apologized for the inconvenience and said they had to be precautious. I told her I understood that. They did what they had to do and so did I. All worked out well.

I was sitting in the living room talking with Mom and noticed that she was moving her legs back and forth, unaware that she was moving them. I didn’t think much about it at the moment and chalked it off to yet another strange little habit Mom picked up—like the one where she runs her tongue across her teeth and it looks like she has something in her mouth. She and I sat and talked most of the day, mostly her asking what day it was and why she wasn’t at day care. By late afternoon Mom was still scratching, only now she was telling me, “I’m itchy all over. This itching is driving me crazy.”

That Saturday morning Mom woke up at 6:00 AM and I told her it was the weekend and she could go back to sleep for a while. She snuggled back under the covers and fell back to sleep almost instantly. When I turned to glance in her room before going back upstairs, I noticed the bed shaking. I walked closer and watched for a minute thinking she was just moving to get comfortable. The motion continued as she snored. Her legs were jerking back and forth under the covers. It was the same jerking movement of her legs that I noticed Friday while we were sitting in the living room.

As I watched Mom’s legs twitch under the covers, I thought about what might be causing her itch and rash.

The pharmacy always gives me an information sheet about new drugs Mom is prescribed. I read every one of them to make sure I know what to keep an eye out for when it comes to side effects or warnings. After watching Mom’s leg twitch while she was sleeping, I ran upstairs and grabbed the information sheet on Seroquel. I remembered reading that the doctor should be called immediately for certain side effects and one was if there is any unusual or uncontrolled movements of the face, lips, mouth, tongue, arms or legs. I reread the information and immediately realized Mom’s leg twitch was new since she began taking Seroquel. I continued to read the side effects and found that symptoms of a serious allergic reaction to Seroquel may include: rash, itching, etc., etc.

I immediately picked up the phone and called the pharmacy and explained about the day care sending her home, about her itching and rash, the treatment for scabies, and that the treatment did not help. I asked if Mom’s itching and rash could be an allergic reaction to the Seroquel and they said it could and to call the doctor to have him prescribe something.

Mom was back up by 8:00 and when I took her pajamas off to get her dressed I noticed the bumps by her clavicle were more pronounced and she was scratching just as much, if not more than she had been the day before treatment.

The next call was to the doctor’s answering service. He called back within 10 minutes. He said to take her off the Seroquel immediately and he was calling in an antihistamine for the itching and that I should use the same anti-itch Sarna cream I used when she had dermatitis.

I called my brother and asked him if he could pick up the prescription for me. He did. I appreciated it, and I thanked him. In conversation he mentioned a number of things that I know his wife read on my blog and I said, “if your wife is so interested in knowing what’s going on with Mom, maybe she and you should visit rather than read my blog to get information and see how she’s doing.” He responded with, “Yes, she reads it but she’s never commented on it.” Instant defense about a rude comment on my blog that I never mentioned to him. You know what they say about people who defend themselves before defense is needed. Immediately, he followed with bashing Two Feather—the person who does all the work around Mom’s house even though he’s “not accepted into this family” according to my brother. After that, the conversation went sour. There is no talking to him. He knows it all, he’s always right, and I’m always wrong.

Now I’m sorry I bothered asking him for anything.

The only reason I continue this blog is because it is my only outlet and there is a wonderful group of people here who know what dealing with Alzheimer’s is like. That group of caring people, who don’t know me from Adam, come here nearly every day to read, comment, show support, and treat me as if I were part of their family. One of the group had even offered warmth and shelter in her home during the furnace episode and offered to sit with Mom anytime I may need a break. Thank you, Betsy. You’re like the sister I never had. I appreciate you all so much, yet, I am sad to say that I have to admit that you understand and care more about my mom and me than some of our own family members. It’s sad that you can accept me for who I am and what I say; yet people who are supposed to be that support system, do nothing but lie and put me down.

**RANT

Since they want to read. Let them read the truth!

My brother told me, “all you have to do is ask if you need anything.” Yeah right! When I asked for him to watch my mom for one day so I could get my uncle moved from his apartment and into a nursing home in April 2006, I didn’t get help. I was asked where my cousins were? Why can’t they move his stuff? Why? Because they have about as much to do with my uncle as my brother does—little to nothing.

Mom has stayed at his house twice in three years. Once in July 2006, when I asked for a weekend, and I was held up from leaving on time for the weekend because my brother didn’t pay enough attention when I showed him how to take Mom’s blood glucose test and I had to go up to his house and show him again just as we were pulling out of the driveway ready to leave. The second time was when Mom asked him to keep her for a night on November 2, 2006 because Two Feather had surgery and she felt I should be at my house with him. Three times since then, when I asked for him to take Mom for a weekend, I got told, “I can’t. I’m going away.” I quit asking. Oh yeah, that’s right, some people can take several vacations a year—every year.

Here I sit knowing that his wife has been reading my blog all this time, and she knew about the power being out, the furnace being broke, me being sick recently, and all the other things I’ve written about here—where was their phone call of concern or offer of help? There wasn’t any. Oh, that’s right, I’m supposed to ask.

Since my sister-in-law has been so “accepted into this family” as my brother says—if she’s so interested in sticking her nose in Mom’s business and mine and wanting to know what’s going on, maybe she should visit! She hasn’t been here since Easter last year. Sticking her nose here is one thing—nosing into other blog links from my site and doing a Google search on Two Feather just makes her that much more pathetic. What exactly is the purpose of either? Just to instigate more problems?

All I have to do is ask?

Taking Mom for Sunday dinner is out because when I asked them to move dinner up an hour so she can still be in bed at her normal time I was told, “Oh no, that’s too early.” God forbid I ask for a little flexibility or for someone to go out of the way just a tad to spend time with Mom.

And of course they can’t take Mom for a week because they "work for a living" and "don’t have time," yet when my sister-in-law’s mom got sick it was okay for her to stay at their house. What’s good for one mom should also be good for the other.

How about picking up Mom’s garbage at 4:30 on Wednesdays and taking it down to the bottom of the hill.

How about calling to make sure we can get off the hill when it snows six inches.

Or, how hard would it be to bring dinner a few times a week, even once a week, for both of us? It’s called “thinking” of little ways to help out. It should be really easy right now since the fish fries are taking place on Fridays for lent. All that would need done would be to pick them up and drop them off. No cooking involved.

I guess all this upsets me so much because they are not willing to bend their schedule to help out, and everything is expected at their convenience instead of working around Mom’s schedule. Why should I go out of my way when they can’t be the least bit flexible?

All I’m asking for is respect to be shown to Mom. This is about her—not me!

**END RANT

The last week of February wasn’t much better. On to more important people and things--my daughter Angel, her husband and Katie came over for nearly two hours last Sunday before they went to Tim’s grandmother’s viewing. Angel brought lunch for all of us. Thank you, honey. I really appreciate you bringing lunch and visiting at the same time.

Mom did go back to day care last Monday with no problem. She still had the rash and we set up another appointment with the doctor for Wednesday afternoon. We had another snowstorm with ice rain overnight on Monday and we stayed in on Tuesday. Tuesday night we got more snow and we stayed in again on Wednesday. I had to call to have Mom’s driveway plowed and salted so I could get her out for the doctor’s appointment. We were back to Mom being up and down all night long after four nights without meds.

The doc said the rash didn’t look like an allergic reaction to meds but to keep her off the Seroquel just in case. He referred her to a dermatologist. She’s back on a light dose of Risperdal before bed.

Thursday and Friday she went back to day care. Friday after I dropped her off I went straight home. The weather report said we were expected to get another 2-4 inches of snow starting in late afternoon. The lower half of Mom’s driveway was solid ice, so I called for someone to spread anti-skid to give us traction. Between that and the new snow expected, I figured we’d be able to get up and down.

When I did get home, Two told me there was water coming in the basement. We couldn’t figure out at first how or why since there hasn’t been any melting with the low temperatures. He was shoveling the sidewalk and called me outside because he heard running water. I walked over to the side of our deck where the sound was coming from and found water flowing out of the top of our well. I called the well-drilling outfit to have him come and check it. In the meantime the water was getting deeper and the 30-year-old retaining wall beneath our deck collapsed and is blocking our basement door.

Two’s dad went in for heart surgery Friday and we sat at home waiting to hear how the surgery went since we couldn’t make the trip to be there. The snow was coming down harder, like a whiteout, and by 3:00 we had 4 inches. Two Feather rode with me to pick up Mom early knowing the roads would be bad. As we pulled up to the day care, I received the call back from the well guy. He told me to have Two call him when he got home and he’d tell him how to shut the well off until he got there on Saturday morning.

Had Mom at home by 4:00, Two walked back up to our house, called the well guy, and had the well shut off by 4:30. Two got a call at 11:00 PM telling him his dad made it through surgery okay. That’s a big load off our minds.

Saturday morning the well was fixed and Two Feather had all the water cleaned up in the basement and the dehumidifier was starting to dry it out. He walked down to visit after.
Stacey called and we talked for a while. Since Two was here she got to talk to him too. It’s always good talking to her. I miss being able to talk to her and Angel like I used to. Saturday was also my son-in-law’s birthday. Happy Birthday, Tim! Hope you got your card and had a great birthday.

Sunday was a quiet day. The lady from church came to give Mom communion. Two visited for a while. Angel called to say she was helping Tim’s family move his grandmother’s things so she didn’t think she’d be able to visit.

Mom and I spent the afternoon talking. Two saw a robin in the front yard. Maybe that’s a sign that better things are coming. I sure hope so, cause I’m sick and tired of being sick and tired.

Christmas—The Good, The Bad, & The Ugly

For those who want to read nothing but peace and goodwill, and want to see a pretty picture of a family at a dinner table, all showing love to each other, you may as well stop reading now. Family died with Dad.

It’s over and I’m done.
Bending over backwards to please others is over and I’m done getting screwed.

I’ve written about a few of the petty goings-on with this so-called family, but I’ve kept quiet about a lot of the lack of respect and ignorance I’ve tolerated. That ends here too!

Ray, my so-called brother, hasn’t bothered to call or visit Mom in four months. Why? He tells everyone it’s because of me. He says I’m keeping him from seeing Mom. That’s a lie. The truth is, he doesn’t have time for her if visiting isn’t at his convenience, and four months ago, after his wife screamed at me on the phone accusing me of not letting him see her, we put a fence line up on the edge of Mom’s property. He did have time to hire an attorney to send a letter to Mom and me four months ago threatening legal action, though. Threatening me for trespassing on what is really Mom’s property that he is trying to claim as his, and threatening Mom with legal action to take that property he’s trying to claim. Nice son, huh!

Because of his and his wife’s attorney letter addressed to my mom, it was against my better judgment to bend over backwards to make arrangements for this so-called son to spend time with Mom on Christmas. But I did make those arrangements and I’m sorry I bothered, because I broke Mom’s trust. I’ll never do that again! So, here was my Christmas…

The Good

Christmas morning was wonderful. Two came down from our house and we sat upstairs enjoying our morning coffee until it was time to wake up Mom. I got Mom up and got her into the shower without a problem, made her breakfast and the three of us sat and talked until Angel, Tim, and Katie came to visit and open gifts. Mom enjoyed watching Katie open her gifts. She enjoyed opening her own gifts as well. Stacey sent a box from Alabama and Mom loved the new sweatshirt, handkerchiefs, and two black velvet pictures to color. Angel, Tim, and Katie bought Mom a new jogging suit and blouse. Two Feather and I bought her a new sweatshirt, blouse, pajamas, socks, emery boards, and chap stick. Stacey called from Alabama while Angel was there so she was able to talk to everyone.

Two left around 11:00 to go back to the house and wait on his dad and step-mom to come. Angel, Tim, and Katie left around noon and headed over to Tim’s parents to open gifts with them.

Around 1:00 Two, his dad, and step-mom came down to Mom’s and ate our early dinner with us. Mom met them a few years ago when we went to Two’s Dad’s house for a visit. She recognized their faces as being familiar, but she didn’t remember the trip. They stayed until 3:00 and left to finish their day. It was a beautiful morning and afternoon.

The Bad

This is where the day turned a bit sour. Mom was sitting content and comfortable in her chair in the living room and Ray came at 3:30 to take her to his house for dinner.

“Mom, Ray wants to take you up to his house for dinner for Christmas.”
“I don’t want to go up there.”
“It’s Christmas, Mom. He wants you to go to his house for dinner and spend some time with you.”
“I don’t care. I don’t want to go up there.”

Ray heard this conversation from the dining room.

“Where is he? On the phone?”
“No, Mom. He’s here.”
“Humph.”
“You don’t want to come up for dinner? Why not? Pat’s there. Toby and Mandy and the kids will be there,” Ray said.
“Oh, you’re here. I haven’t seen you in a long time.”
“I know it’s been too long. I missed you,” Ray said.
“Yeah, you’d never know it.” Mom was irritated.
“So, you want to come to dinner?”
“Not really.”

Stupid me, trying to keep an argument from starting said, “Oh Mom, You’ll have fun once you’re there. They haven’t seen you for a long time.”
“I know they haven’t,” she said, glaring at me.

While Ray put her coat on her she glared at me the whole time. Piercing angry eyes, pleading for me to stop the process that was taking place. I knew if I didn’t encourage her to go I would have had an argument with Ray. I should have let the argument happen rather than put my Mom in a position to go somewhere she didn’t want to go.

She walked with her walker to the door turning and looking at me with those piercing angry and pleading eyes. My heart broke as she turned with tears in her eyes asking for a kiss and hug before she left. “I’ll miss you,” she said.
“You won’t have time to miss me, Mom. You won’t be gone that long.”

Twice, before she made it off the porch she asked for a hug and kiss and held me like she didn’t want to let go. Ray slung the diaper bag over his shoulder and Mom was at the edge of the porch and the walker rolled off the steps and crashed to the sidewalk.

“Stand there, Mom,” Ray said.
“I'll hold Mom while you get the walker, Ray.” I tried to say it as nicely as I could letting him know he shouldn’t leave her standing alone.

He tossed the diaper bag into the car and grabbed Mom’s arm to walk her to the car. I picked up the walker and folded it so he could put it in his car.

“Ray, she needs to use the walker at your house and she’ll need help in the bathroom, and not by you because that’s not appropriate.”

He nodded.

Mom made it to the car with Ray holding her arm telling her, “I’ve got you.” She went to get into the car and instead of sitting in the seat she fell into the seat.

“Well, you didn’t have me very good, did you,” she said to Ray angrily.

All I could think was, good grief, he hasn’t even left the driveway yet and already her walker went flying and she fell into the seat of the car. Is she going to come back in one piece?

As Ray walked around the car I said, “I’m holding you responsible for her while she’s with you. If anything at all happens to her, you call my cell phone immediately.”

“We’ll be OK, won’t we?” he asked me. He was nervous.

“If you listen to what I’ve told you, you’ll be fine.”

Mom waived at me from the car. Her face was filled with anger, hurt, sadness—and exhaustion.

Two came down to pick me up and we went to my house. All I kept thinking was that I didn’t stand up for Mom’s wishes as I normally do. I was sending her off with a son who hadn’t bothered with her for four months. She was going to spend an evening with a family of strangers. People—her grandson, his wife and great grandchildren who live 10 minutes away and haven’t talked to her or visited her since last Christmas. People, who have no clue that Mom can sit and talk to them as if she knows them, yet wonder who they are the whole time she’s talking.

Two tried to take my mind off my Mom by turning on a movie. It was an excellent movie—Black Cloud, about an Indian boxer. It ended at 6:30 and Ray called at 7:00 to tell me he was bringing Mom home. “I’ll be there in 10 minutes,” he said. I knew it would take longer. It takes that long to get Mom from the house to the car. Two and I went back down to Mom’s house and sat at the kitchen table waiting.

The Ugly

Ray pulled in at 7:30. When Mom came in the door her eyes filled with tears. Whether the tears were relief of being home or distress from being away, I wasn’t sure, but I soon found out. I could see the exhaustion on her face.

“Are you OK, Mom?” I asked. She didn’t answer. She pursed her lips to keep from crying.

“Are you OK, Mother?” Two asked as I guided her to her chair at the table.
“Yeah, I’m okay. I’m tired. I’m glad it’s over.”

Ray went back out to the car to get the diaper bag and gifts.

I gave Mom a hug and asked if she had a good time. She looked at the door as Ray walked in and said, “I’m not doing that again.”

He set a bag on the floor and said there were a few pieces of pie in the bag and a few lottery tickets, a gift card, and some chocolate.

“Ray, you understand and remember me saying that this was a one time thing with Mom being up this late—that I’m not changing her schedule but this one time. This is too hard on her. She’s exhausted.”
“I thought you said she could come up for dinner on Sundays.”
“I did, and that’s only if Mom wants to go and if you change your dinner time to fit her schedule.”
He wasn’t happy with that, and looked at Mom for her to disagree. Mom looked up at him and said, “Yes, I’m tired.”
“I'll call you,” Ray said as he headed for the door.

Just before he walked out the door, Two Feather said, “Hey Ray, don’t you have something to say to Joanne?”
“I already said Merry Christmas.”
“Something other than that?” Two asked.
“I don’t know what you mean.”
“I think a ‘thank you’ is in order.”
“Oh yeah, thanks for letting me see Mom,” Ray said as he closed the door and left.

Mom grabbed Two’s hand and said, “Thank you. I’m glad you said that.”

Ray wasn’t even off the porch before Mom said, “I’m never doing that again!” She was angry…at me.

“Why Mom? What’s wrong?”
“Don’t you ever make me go there again. I didn’t want to go.”
“Then you have to tell Ray that so I don’t get accused of keeping him from you.”
“I did say I didn’t want to go!” she yelled. “You didn’t stop him!”
“No, I didn’t stop him. I’m sorry, Mom. I didn’t want an argument on Christmas. From now on, I promise you don’t have to go anywhere you don’t want to. But this was Christmas,” I said.

“If I’m around next Christmas, I’m not going and if you make me go, I’m moving out of here! If it wasn’t for that lady, Pat, I wouldn’t have had anyone to talk to.”

“I’m sorry, Mom.”

So there it is. I tried to make Christmas enjoyable for everyone and all I succeeded doing was making my mom angry with me by breaking her trust in me.

I’ve been living with Mom and taking care of her for three years for her health, safety, welfare, and dignity. Until now, I’ve held to her wishes. I went against my better judgment to give an “I” person what he wanted. There is no “I” in mother. Mother ends with “her.” It should be all about HER.

Maybe I should have called you at one, two, three, and four o’clock in the morning when Mom woke up asking nonexistent people in her bedroom, “Where’s Joanne? Why isn’t she here for dinner?”

Maybe you can explain that to her. I can’t.

From this point on, whether people understand or not, there is no changing HER schedule for anyone. For this so-called family who claim they want to ‘see’ her—you’ll have to call or visit HER in HER house on HER schedule. If you can’t do that you’re not much of a family, are you?

It’s over and I’m done.

Nice Visit -- Big Surprise for Mom

I got Mom up at 9:00 as I do every Saturday morning. We went through our regular routine of getting her into the shower, dressing, and eating breakfast. By 10:35 she was ready for her day.

We normally sit at the breakfast table after she's finished eating, so it wasn't out of the ordinary that she sat drinking her coffee while I excused myself and used the phone. I called my brother and told him she was ready.

I sat waiting anxiously for him and his wife to pull up and wondered how she would react when they came in the door.

When she heard their car pull up, she asked, “Who’s that?”

I said, “You have company, Mom.”

When my brother and his wife walked in, I could tell by the expression on her face that she wasn’t sure who they were.

My sister-in-law walked up and hugged her and said, “Hi, Mom. How have you been.”

I thought for sure her bubbly voice would ring a bell and Mom would realize who she was, but that look of confusion was still on her face.

She said, “Do you know these people? It’s been a long time since we’ve seen them.”

I knew from that statement that she wanted me to tell her who they were; their faces were familiar, but she couldn’t figure out who they were.

“I sure do know them, Mom. Do you?”

“I think so,” she said.

My sister-in-law jumped in immediately and said, “Sure you know us, Mom. This is your son, Bob, and I’m his wife, Boots.”

Boots handled it perfectly, introducing themselves.

After they talked for a few minutes, Mom asked where they were from. She was still confused.

I sat at the table to make sure Mom was comfortable with them there and told Mom I was going upstairs to let them visit.

Mom said, “You can stay down here.” That is always a sure sign to me that she doesn’t want me to leave the room, but I felt they needed their time with Mom without me there.

I said, “I know, Mom, but Bob and Boots don’t get to visit often and this is their time to visit. I get to see you every day.”

She seemed okay with that and I went upstairs. I came down a few times to take her to the bathroom and went back upstairs when she was finished and back at the table with them.

After a few hours, Mom told them she was tired and they decided it was time to leave. They seemed like they had a nice visit. They thanked me, I said they were welcome and they went on their way.

They gave Mom a picture of her great-grandchildren and put all their names on the back.

After they left, I took Mom into the living room and sat with her. She was very quiet and thoughtful for about 10 minutes as she stared at the picture. Then she said, “who are these people in this picture, and who were those people that just left?”

For the rest of the day and most of the afternoon, I explained the same thing over and over. “That was your son and his wife and the picture is of your great-grandchildren.”

I think by the time she went to bed, she finally grasped who they were.

“Wow, that was a big surprise to see Bob and Boots today!”

“I’m glad it was a surprise, Mom. Glad you had a nice visit.”

I was glad they had a nice visit. I'm sure my brother has a little better understanding of a few things about Alzheimer's Disease. At least he saw for his own eyes how easily Mom tires out, how slow she is at getting around, and how often she forgets what's just been said.

Surprise Phone Call--Mom's Getting a Visitor!

I received a surprise phone call from my oldest brother this evening asking me when would be a good time to visit Mom. I asked him when he was planning on coming up. He said, “I’m here now.”

Needless to say, I was shocked. I didn’t think he’d be visiting anytime soon with all he has going on in his life, and I certainly didn’t expect a spur-of-the-moment visit because he has to drive nine to ten hours to get here.

He said he didn't know for sure if they were going to make it up. He had some sort of convention in D.C. and wasn't sure his wife would feel up to the rest of the trip, so he didn't want to call until he was sure they'd make it.

I told him that she’s in Day Care Thursday and Friday, but he could visit Saturday and Sunday. He knows she's in bed early and knew that evening visits weren't a possibility. So we made arrangements for him to come on Saturday after I woke Mom, bathed her, dressed her, and made her breakfast.

He said Saturday morning would be great because he and his wife planned on leaving Saturday afternoon. I told him I’d call him Saturday morning when she was ready.

I didn’t tell Mom he was in because I didn’t want to ruin his surprise.