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WritingAfterDark

Blogs of Writer, Artist, Photographer, & Caregiver Joanne D. Kiggins

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Joanne has published more than 2,500 articles and was award recipient of the 1990 Woman of the Year for Beaver County, Pennsylvania, for her accomplishments and excellence in journalism and to the community. Her co-authored book, “Unforgettable Journey,” won fifth place in the Grand Beginnings romance contest. An excerpt from her WIP, “Unearthed,” placed her fifth in the Absolute Write Idol contest. Most recently, her essay, “Perseverance,” is published in the Stories of Strength anthology in which 100% of the profits are donated to disaster relief charities. Her most recent articles were published in ByLine Magazine, Writer's Digest, AbsoluteWrite.com, and Moondance.org. She has a monthly freelance writing column at Absolutewrite.com. Currently, she is the sole caregiver for her 85-year-old mother.

Sunday, September 30, 2007

Happy Birthday, Ray!!

Just wanted to say HAPPY BIRTHDAY to a special person. Raymond K. Wong is not only a friend, but also a truly kind and sincere human being.

HAPPY BIRTHDAY, RAY!!!! Hope your day was a good one.

Here's wishing you many more.

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A Tribute to My Caregiver Friends -- Reversal

Many of my online friends have lost their loved ones due to this horrible disease Alzheimer’s. My heart breaks for those who are grieving now, and I wish them much strength in their grieving process. Though our loved ones do pass and we know they are finally at peace, it breaks our hearts to see them go.

((HUGS)) to all at the Alzheimer’s site who have walked down this road, and have reached the end where there are no more crossroads to wander. May each of you hold your loved ones in your heart and may they be at peace.

Thanks to one of the frequent posters at the site, I’m offering this poem that she shared with all the caregivers. Thank you. These words are so heartbreaking, yet so true.


Reversal
By: Hannah Ruth Joseph


When she was born and helpless and innocent as a dove

Her mother held her tightly

To show her she was loved.

And when she was a toddler, her legs just sent her sprawling,

So mother held her hand to keep her child from falling.

Then as she reached her womanhood and needed room to grow,

The mother reluctantly realized…

She had to let her go.



Time has a way of changing things, reversing the roles that are played,

Now, the daughter becomes the mother,

For the mother has lost her way.



When she grew old and frail and delicate as a dove

Her daughter held her tightly

To show her she was loved.

And as she grew more feeble, her legs just sent her sprawling,

So daughter held her hand to keep her safe from falling.

And when she reached the end of life with no room left to grow

The daughter reluctantly realized...

She had to let her go.

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Saturday, September 29, 2007

Conduct

Conduct

Do all the good you can,
In all the ways you can,
In all the places you can,
At all the times you can,
To all the people you can,
As long as ever you can.

~ John Wesley

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Friday, September 28, 2007

Happy Birthday, Two Feather!! Uncle Joe!! & Dennis!!!

I think I’m finally caught up with all the latest news.

I went to see my Uncle Joe yesterday. It was his birthday. He was in good spirits. All the nurses were surrounding him with flowers and balloons. He's adjusted very well to the nursing home. I'm so glad he did. I wish I could take care of him, too, but he understands that I have my hands full with Mom. He was happy to see me and really liked the new shirts, handkerchiefs, and winter hat I bought him for his birthday. Happy Birthday, Uncle Joe!

Today was Two Feather’s birthday.
We spent a few hours at the Rogers Flea Market earlier in the morning and came home. I was exhausted because Mom was up all night last night, so I curled up on the couch and fell asleep.

Two spent the day cutting and splitting wood.

I didn’t wake up until it was time to pick up Mom.

Poor guy didn’t have much of a birthday. I felt horrible that we didn’t celebrate in some way. He’s such an understanding man. Not too many men in this world would do what he’s doing; living alone, without his significant other, while I’m at Mom’s taking care of her, cooking for himself, and maintaining both properties.

I appreciate everything he does and Mom does, too.

Happy Birthday, Two. Thank you for being you!!

Can't forget to mention that today is also my son-in-law's birthday. Happy Birthday, Dennis!

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Tuesday, September 25, 2007

What Do I Do All Day?? I'm A Caregiver!

Many caregivers deal with people who just don’t get it. Alzheimer’s Disease is one of the most horrible diseases a person could get. There is no normalcy with this disease. There is no knowing what the day might be like. There is no knowing what the next moment will be like. Planning anything is almost impossible. Once a loved one reaches the severe stage of Alzheimer’s, and sometimes even in mid-stage, everyone can throw plans out the window. The best we can do is keep our loved ones on a schedule and hope that nothing agitates them to throw them off that schedule.

Our job is to maintain a safe, warm, clean, relaxing environment and protect the health, safety, welfare and dignity of our loved ones.

Caregivers are on a constant watch, every minute of every day, making sure our loved ones are safe, warm, clean, dry, comfortable, and we do our very best to keep our loved one free of agitation.

Some people with Alzheimer’s Disease become attached to the caregiver’s hip. There is no moving from one room to another without the AD patient following behind. There is not a moment’s peace or a moment to relax. Just when a caregiver sits down hoping to prop their legs up to relax, there is a call for some need or another.

AD patients need help with everything. They need their hygiene taken care of for them because they’ve forgotten what to do. They don’t remember how to wash, brush teeth, wipe after going to the bathroom, flush the toilet; sometimes they don’t remember where the room is where these things should be done. They need a step-by-step instruction on how to walk, move through the house, get to the bathroom, and once they are in the bathroom, they need a step-by-step prompt as to what they should be doing while they are in there. In many cases, the person with Alzheimer’s cannot perform needs even with the prompts. They become agitated because they are no longer able to do things.

Someone recently sarcastically told me they work for a living and asked me, “What do you do all day?”

On days the loved one may be at Day Care, the caregiver is still busy all the time. At least I am. Regardless of how many hours my Mom is at Day Care, that doesn’t change the need for other things to be done.

My significant other lives in my house. I moved in with my mom into her house. We have two houses to maintain.

There’s grocery shopping, cleaning, laundry, prescription pick up, PT therapist appointment, OT therapist appointment, home health nurse appointment, dog grooming, dog veterinarian appointments, carpet cleaning (due to accidents the Depends don’t catch), bed sheets to be washed, beds to be made, bathrooms to be cleaned and disinfected everyday, grass cutting, flower bed weeding, house repairs, gutters to be cleaned, shrubs to be trimmed, gravel driveways to maintain, ditches to dig for rain drain-off, ditch basins to be cleaned out, storm damaged trees to be removed from driveways and property, newspaper to be picked up, mail to be picked up, garbage to be taken out and picked up, car oil changed, furnace to be checked, bills to be paid, meals to be cooked, doctor’s appointments, etc., etc., etc. And when the loved one is home it’s a constant, never-ending day’s work just meeting their every moment daily needs--and all their nightlong needs.

A typical day with Mom begins as follows:

“Good morning, Mom. It’s time to get up.”
“Already!”
“Yes.”
“I’m tired.”
“I know, but you have things to do.”
“What do I have to do?”
“We need to get you cleaned up.”
“Where do I do that?”
“In the bathroom.”
“Where’s the bathroom.”
“Let’s get up and I’ll show you.”
“Do I have to?”
“Yes.”
“Grumble, Grumble. I can’t get up.”
“I’ll help you.”
“Thank you, honey.”
“You’re welcome, Mom.”
“What now?”
“I have to wash you.”
“I’m sorry you have to do this.”
“It’s okay, Mom. That’s what I’m here for.”
“Thank you, honey.”
“You’re welcome, Mom.”
“What should I do?”
“You need to stand up.”
“I can’t.”
“Sure you can, Mom.” (I help her up.)
“What’s that?”
“It’s your walker.”
“Why do I need that?”
“It helps you walk.”
”It does?”
“Yes. It keeps your balance.”
“I’m dizzy.”
“You’re fine. Hold onto the walker.”
“What do I do?”
“Move your feet.”
“I can’t.”
“Sure you can, Mom.” (I touch her leg to prompt the move.)
“Where do I go?”
“To the bathroom.”
“Where’s the bathroom?”
“Over there.”
“Where?”
“Follow me.”
“Where am I going?”
“To the bathroom.”
“Where’s the bathroom?”
“We’re on our way.”
“What am I doing?”
“Going to the bathroom.”
“What for?”
“To get cleaned up.”
“What for?”
“So you can get dressed.”
“I’m tired.”
“I know.”
“Where am I going?”
“To the bathroom.”
“Where’s the bathroom.”
“Over there.”

At this point we’ve only made it three feet to the end of her bed. Are you tired reading?

“Where?”
“We’re almost there.”
“I’m tired.”
“I know.”
“What am I doing?”
“You’re going to the bathroom.”
“What for?”
“Keep walking, Mom.”
“What’s this thing?”
“It’s your walker.”
“What’s it for?”
“To help keep your balance.”
“What am I doing?”
“We’re going to the bathroom.”
“It’s too late.”
“I know, Mom. We need to get you cleaned up.”
“I’m sorry, honey.”
“It’s not your fault, Mom.”
“I’m dizzy.”
“You’re fine, Mom. You’re just tired.”
“Yes, I am.”
“Keep walking, Mom.”
“Where is this place?”
“Just a few more steps.”
“Oh, there it is. What’s that?”
“It a toilet rail.”
“What’s that for?”
“To help you get on and off the toilet.”
“We finally made it.”
“Yes, we did.”
“What should I do?”
“Stand there while I get these (Depends) down.”
“Now what?”
“I’m running the water for your shower.”
“I don’t want a shower.”
“I know, Mom. But it’s the only way to clean you properly.”
“I don’t want a shower. I’m cold.”
“I know. The water is perfect.”
“I don’t want a shower.”
“I know. Let’s clean you up a bit.”
“What do I have to do?”
“Step over to the bathtub.”
“I don’t want a shower. I’m cold.”
“I’m sorry, Mom. Sit down.”
“Now what?”
“Slide over.”
“I can’t.”
“Sure you can, Mom.” (I help slide her over.)
“What do I do?”
“Lift your legs over the bathtub.”
“I can’t.”
“Sure you can, Mom.” (I lift her legs over the bathtub.)
“Now what.”
“I’m turning on the shower.”
“I don’t want a shower.”
“Feel how warm the water is?”
“No it isn’t. I’m cold.”
“Here’s the washcloth, Mom.”
“What do I do with this?”
“Put some soap on it.”
“Where’s the soap.”
“Right here.”
“Now what?”
“Put the soap on the washcloth.”
“I hate this. I’m cold.”
“I know.”
“What should I do?”
“Wash your face.”
“How?”
“With the washcloth.”
“I got soap in my eyes.”
“I’ll help, Mom.”
“There’s still soap in my eyes.”
“How’s that?”
“Better.”
“Good.”
“But I’m cold.”
“I’m sorry you’re cold.”
“Now what do I do?”
“Wash your neck.”
“Will you do it, I’m tired.”
“I’ll wash your back. How’s that?”
“Brrr, it’s cold.”
“The water is warm, Mom.”
“I’m cold.” (All this time the heater is blasting and I’m sweating.)
“Sorry, Mom.”
“What’s next?”
“Your arms.”
“What about my arms?”
“You need to wash them.”
“What’s next?”

And so on, and so on, and so on.

Finally everything is washed and clean.

“Okay, Mom. Let’s get you dried.”
“What do I do?”
“Just sit there for a minute.” (I dry her hair, and face.)
“That feels good, but I’m cold.”
“We’re almost done, Mom.”
“Hurry up, I’m cold.”
“Okay, Mom.”

We take the next ten minutes getting her off the bathtub chair, out of the bathtub, and standing.

“Now what?”
“Now we’re going to dry you and get you dressed.”
“Thank God. I’m freezing.”
“You’ll be warm soon, Mom.”

Now here we are an hour into the day and we’re just beginning to get dressed and we’re still in the bathroom.

I won’t bore you with the remaining 7-8 hours Mom is up during the day, but I think most people can get a pretty good idea of what a caregiver goes through in just one hour. Multiply that by how ever many hours the loved one is up and awake and maybe you’ll have an idea of how exhausting a “good” day is.

For those who ask what a caregiver does all day, maybe they should buy the book, “The 36-hour Day.”

The next time someone flaunts their work schedule at me and sarcastically asks me what I do all day, I should use the answer those on the Alzheimer’s Association site use: “I sit around doing nothing but eat bonbons and party all day. What do you do?”

But no, that would be me causing a problem, so I’ll just hang up!

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Sunday, September 23, 2007

Therapy, Nurses, Mom's Exhausted

I woke up Mom at 9:00 yesterday morning and got her into the shower. Showers are so difficult because she fights me every time the word is mentioned. She hates water on her face. She hates water, period. She never learned to swim because she does not like water.

Showering was finished in 45 minutes, then she was dressed, ate breakfast and sitting in her chair waiting for the entourage of therapists and nurses. The first came at 10:30 just after Mom sat down. Of course there was no time for me to do anything because I had to be in the room, answering questions, filling out paperwork, listening to what the nurses said and did so I would know what I was supposed to do. The first nurse left at 11:40.

I had twenty minutes to get Mom lunch and ready for her next visitor.

The next in line was the home health respite person. She arrived at 12:05. By the time she went over everything with me concerning Mom’s needs, filled out paperwork, and explained the program, it was 1:45.

My daughter had called Monday and said she was coming to visit this weekend. They were coming in for the Steelers game and she wanted to visit Saturday since she wouldn’t be able to visit Sunday. We’d made tentative arrangements for 1:00.

She called at 12:45 but I didn’t answer the phone because I was busy with Mom’s nurses. Called her back around 2:00 and said she could visit for a little while, but I wasn’t sure how long Mom would be in a visiting mood. She was already tired and agitated from the nurses being there.

Angel came for a little while and soon realized how tired Mom was. Angel talked with Mom while I made dinner. She didn’t stay long because she understands the disease and how it affects Mom.

By 4:00 we ate, Mom was even more exhausted and she was ready to go to bed. Once again, when Mom's asleep, I’ll grab whatever sleep I can. It didn't take me long to drop off.

This morning I got Mom up and started another day. Her home health nurse was coming at 11:30.

She was here until 1:00.

The rest of the day was a fiasco!

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Wednesday, September 19, 2007

Alzheimer’s Disease Progressing—Mom in Hospital and Home Again

I know I haven’t been here for a while. Things have been hectic to say the least.

A few weeks ago Mom was able to get up out of bed and dress by herself with very little help. One morning she woke and seemed very different to me. She didn’t know what her clothes were and couldn’t figure out how to put them on when I placed them on her bed. She had no clue what to do.

Her smile was still full, she was still able to stand and walk, she had use of both arms and hands; she just seemed weak and confused. It was like she came off her plateau and dropped down suddenly.

The rest of the week she still needed help dressing, and still seemed more confused than she had been.

So here we are in another stage of this horrible disease called Alzheimer’s.

She was complaining of being dizzy when she stood up. At Adult Day Care they said she also complained of being dizzy, but also when she was sitting. Each time she complained of being dizzy, her blood pressure and blood glucose were checked and they were normal. The Day Care attendants checked them too and said the same thing.

I called her doctor, explained the situation and he told me to take her to the ER. When we got there, I insisted that a neurologist be brought in and insisted she be admitted for observation. After four hours in the ER, they finally called her doctor and she was admitted.

A CT Scan done while in the emergency room showed that she had an older Lacunar stroke. They stated that it could have happened anywhere from a week to a few years ago. They told me that there was nothing I could have done because these type strokes show little to no difference. It most likely happened in her sleep, they said.

When I’d heard this, I could pretty much pinpoint when it happened. One day she was dressing herself, when she woke up the next morning she was different as I explained before; unable to recognize her clothing, unable to dress herself, totally confused, and a little weaker.

For the next day and half I was running to the hospital, talking with doctors, neurologists, social workers, nurses, physical therapists, occupational therapists, and working out some kind of schedule to have all these people come to her house for the therapy she needed.

Her doctor suggested I place her in a skilled nursing facility for rehab in order for her to get her therapy and for me to have some respite care. I told him I would rather have her home because a facility would confuse her more. He totally understood and commended me for the decisions I was making in the best interest of my mother. He told me I was doing a wonderful job and encouraged me to continue to keep her home, in her environment. His encouragement and thoughtfullness was all I needed to give me that extra ounce of strength to continue doing what I'm doing. Caregivers don't hear much encouragement, and when one hears it from a doctor, it affirms that what we are doing is the best for our loved one.

Her doctor and the neurologist stated that she was in the severe stage of Alzheimer's. I'd already known that, but at least I now know for certain that I was correct in my thoughts of her progression and it was verified by doctors. It doesn't take much to understand the disease when you watch it's progression and you're dealing with it everyday. Even the slightest change is noticeable.

Today I brought her home from the hospital at 3:00 and we were back in our routine. Just a little slower now because she’s walking with a walker. She was once again exhausted and in bed by 4:00. I knew I needed to get all the rest I could because the team of therapists and nurses were scheduled to start tomorrow.

When she fell asleep, so did I.

Then the phone woke me up. Nevermind about that. I won’t even get into it here. It’s not worth it!

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Sunday, September 16, 2007

Nightmares and No Sleep

I didn’t get any sleep at all last night. When Mom finally fell asleep, she woke up every half hour with nightmares. I asked her what her dreams were about and she told me that there were strangers in the house and they were trying to hurt her. I kept telling her that there was no one in the house but us and no one was trying to hurt her. An hour later we went through the same thing. Every thirty minutes to an hour she was screaming for me again. Each time, she said she thought there was someone in the house who was trying to hurt her or me.

Alzheimer's is horrible. Tiny things will stick in our loved one's mind, sometimes good things, sometimes bad things, but we never know what is going through their minds. It's hard to tell what caused her nightmares. It could be a simple schedule change. It could be the smallest memory that aggitates her. It could be my brother's visit. Any number of things could trigger her aggitation. Regardless of what it was, we still deal with the aftermath.

By 7:00 AM she finally fell asleep and she only slept until 10:00. She was exhausted from not sleeping much and I was exhausted from not sleeping at all.

After our morning routine of showering, dressing, and eating breakfast, she complained of being tired. I kept her busy all day to keep her awake and active. I did the laundry and had her fold the clothes and towels. I did the dishes and had her put them away. I had her coloring, working with word finds, hidden picture puzzles; I even had her looking through old magazines pulling out recipes and coupons. We tried anything and everything that would keep her busy and awake.

There was no talk of visitors or dreams. She didn’t remember either.

While I was making dinner, I had her break up lettuce for our salad. She was so exhausted by 3:00, I had to keep talking to her to keep her awake while she ate. She ate very little and wanted to go to bed by 4:00. After dinner we started our bedtime routine. It was earlier than the normal 5:00 bedtime, but there was no sense in trying to keep her up any longer. By 4:15 she was in bed and asleep within minutes.

I can always tell by the level of her snoring how exhausted she is and how much sleep I may get in between her calls for help. This evening I might get 2-3 hours before she wakes and has to use the potty chair. We’ll see. Goodnight, all. I’m grabbing the zzz’s while I can.

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Saturday, September 15, 2007

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.

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Wednesday, September 12, 2007

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.

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Friday, September 07, 2007

Memories Cut Limb by Limb

Friday, September 7, 2007

Some memories you can keep forever; others need to be cut away limb by limb to maintain peace of mind.

Today, I’m watching a part of my life that has been around for as long as I can remember be stripped of its branches and laid to rest. The nearly 100-foot pine tree that stood tall, overshadowing my Mom’s house, is being taken down. With the storm damage a few weeks ago, we dodged a bullet and I felt it was time to remove a tree that had the potential of being a real danger to Mom’s house. The last thing we need is a storm during the middle of the night, or anytime for that matter, that could easily uproot this monstrous pine tree and have it land on the house.



As I watch Tracy Fennell, owner of Fennell’s Tree Service, climb with his spikes, I remember climbing this tree as a child and with each branch he falls a little piece of me falls apart. I’ve always known I’m an emotional and sentimental type person, but these past years taking care of Mom I’ve realized how very tuned in I’ve been to my past and my surroundings. It was with great sorrow and many tears I watched each limb come down.

Here is a picture of the same area after the tree is down.


I mentioned that I was saddened that the tree was taken down, but I must admit, it makes the view to the side yard all that more beautiful. The deer and turkey are more visible and it’s quite fun to watch them graze in the yard.

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Tuesday, September 04, 2007

Street Sweeper Ticket Waived--Thank YOU!!

Tuesday, September 4, 2007

I went to the Police Department as requested to speak with the Chief about the ticket I received for dropping off my mom at the Day Care while the street sweeper went by.

The Chief took the ticket and said he would take care of it. He explained that many residents had been calling and were angry that people didn't move their cars for the street sweeper and the officers decided to give tickets regardless of the situation.

He apologized for the inconvenience and said he wished the officer had used some discretion in this case.

I'm just thankful that the Chief took the time to check into the situation and told me he would take care of the ticket. He told me that this was the last street sweeping for the year.

I said, "You can be sure that next year when the street sweeper begins his job, I'll sit back and wait until he passes no matter how many officers wave me on by."

He chuckled, shook my hand, apologized again, and we both told each other to have a nice day.

Thank you!!

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Monday, September 03, 2007

It Isn't Worth the Aggravation

Monday, September 3, 2007

I called my oldest brother and asked if he had taken the pages from Mom’s family album the last time he was up. He said, “No, I wouldn’t take the only thing that would help her remember.” I told him that was why I was so upset that they were ripped out and missing; because it is the only way to show her she had a past and those memories/pictures are now gone.

So, here I am, between a rock and a hard place, again, wanting to help Mom keep her memory as long as possible and not being able to ask for pictures taken from her own album. After speaking with my oldest brother, I remembered I had shown Mom the album before and wrote about it in my blog. I searched and found my writing in October, 2005. This verified to me that he couldn’t have taken the pictures because he hasn’t been up to visit since 2004.

He told me not to bother asking my other brother because I’d just end up with World War III on my hands. I agreed and haven’t bothered with it.

It’s sad that the few things Mom could or may enjoy have been taken from her personal family album and her home. I get so tired of dealing with added nonsense that I’m inclined to agree with my oldest brother. It would cause World War III and I’m not willing to get sick over childish foolishness. It isn’t worth the aggravation.

I had planned to make copies of the album for each of us kids when her journey with Alzheimer's Disease is complete.

Hopefully, between the copies of pictures Mom had given me over the years, what pictures I'd already had, and the pictures in my uncle's album, I'll be able to make a new memory album for Mom that will be nearly as good as the one she had.

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Sunday, September 02, 2007

Went to See Uncle Joe & Dealing With Dilemmas

Sunday, September 2, 2007

Went to see my Uncle Joe at the nursing home. Mom and I enjoyed sitting outside with him for the afternoon. It was the last hot dog roast for the summer. We all enjoyed our hot dogs and sat on the bench outside until about 3:30. Joe was in good spirits but sad to see us leave. I’m thankful that he understands Mom gets tired and I neededed to get her home.

We were home by 4:00 and Mom was exhausted from sitting and talking all day and walking the 30 feet (twice) from the front entrance of the nursing home to the car.

She wasn’t hungry because she ate the hot dog at 3:00, so I made a small salad and she ate about half of it before she started dozing off at the table. It took until 5:00 to get her cleaned up and dressed for bed. Once she was comfortable in bed, she was snoring by 5:15.

Mom gets worn out easily from doing practically nothing. I sit and listen to her breathing and realize that it won’t be long before she’s unable to visit with me when I go to see Joe. The ride, the walk from the car to the front entrance of the home, and sitting trying to think of things to talk about is exhausting for her.

Tonight I sit and contemplate all that has gone on lately and I wished for others to understand what she’s going through, what it takes to be a caregiver for her as she goes through the stages of Alzheimer's Disease, and I try once more to relax and take advantage of the time she sleeps. I begin to question myself, and wonder if I’ve done the best thing for Mom by keeping her in her home, in her own environment, and trying to keep her memory for as long as possible. When I’ve hashed out all the problems I’ve dealt with that aren’t associated directly with keeping Mom safe, warm, loved, and comfortable, I come to the same conclusion. I’m doing the right thing. I’m doing exactly what Mom asked me to do. Now, if I could just continue to keep telling myself that, my job of care giving would be so much easier. I need to remember that I do not need to explain my decisions to those who don’t agree with me, I do not need to explain why I have to keep Mom on a schedule, and I do not need to be everyone's "excuse" for what they do not understand or do not want to accept. I can only send information about the disease, let them know that they are responsible for learning what they can and they are responsible for their own feelings of inadequacy. If they don't feel they see her often enough, maybe they should pick up the phone once a week rather than once every 4-6 weeks when it's convenient for them. I’ve tried everything from bending over backwards, to being blunt, to ending up in an argument—none of these courses I’ve tried have made a difference.

I’ve finally reached the point where I have to ignore the problem people, continue to do what I’ve been doing for Mom and make sure I begin to take care of myself as well. I cannot let people who don’t understand Alzheimer's Disease and its many ups and downs, upset me and possibly endanger my health. If that happens, there would be no one to care for Mom.

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Saturday, September 01, 2007

Photo Album Pages Ripped Out--Memories Gone

Saturday, September 1, 2007

Mom was up about six times last night. It always amazes me that she can wake up, yell for me to help her with her pants, and be back to sleep and snoring before I get back in bed. Of course, I lay there trying to go back to sleep and normally don’t until after her third or fourth need to use the pot. Once I’m awake, it’s very difficult for me to go back to sleep. I’m starting to look like a raccoon with my black circles under my eyes.

I did manage to get a few hours sleep before I woke her up at 9:00. She wasn’t happy about getting up and she was less happy about having to get a shower. After an hour in the bathroom, I finally had her washed, dressed and ready to sit in the kitchen to eat. Mom is normally always very sweet, but when Alzheimer's Disease and agitation decides to take over her brain, she can be a handful.

This morning she wanted to know where we were and why we weren’t eating at her house. For months she’s not recognized her own home and I continue to point out the things that might register: the cabinets that Dad built and put in the kitchen, the ceramic trivets she made that are and have been hanging on the kitchen wall for thirty years. Lately, I realized that she really doesn’t remember these things; she’s only remembering me telling her about them.

I tried explaining what the house looked like when Mom and Dad bought it, but it wasn’t doing any good. She said, “Are there pictures of all this you’re telling me about?”

“Yes, Mom there is.”

I went upstairs to get the family photo album and show her what the house looked like when she and Dad bought the place.

When I took the album downstairs and opened it, I was totally shocked. More than forty pages of pictures had been ripped out from the old rope tie that once held them together. She asked where all the pages were. I didn’t know what to say! All the pictures that could have helped remind her of her past were GONE. She cried when she recognized the album and saw all the pages torn out. “Who did this?” she asked. I was at a loss for words. I didn’t know how to console her, other than to tell her that I’d try to find them.

I knew Mom hadn’t ripped them out; her picture albums were her pride and joy. Beside that, they were upstairs in a dresser, and she hasn’t been upstairs since I moved in. Good God, what’s next?!

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