November Update

I’m gaining some strength back and feeling better and Mom is doing well health wise, but she’s losing strength in her legs and has had a drastic decline in her memory and ability to comprehend things.

November 7th was my 56th birthday. This year was much better than last. I heard from both my daughter’s early in the day. Two took me out for lunch and I received a few surprise calls. I also had a very nice surprise when I picked Mom up from day care. Angel had called the day care and asked if they would help Mom make a birthday card for me. Mom handed it to me in the car and when I opened it I broke down in tears. Mom was so proud that she remembered my birthday and made a card for me. The envelope had a flower on it made with foam and my name in foam letters. The inside of the card had more foam flowers and Mom’s handwriting. “To my beautiful daughter, Joanne. I love you, Mom.” Inside the card was a small wooden apple with a heart and my initials in the center.

Thank you, Angel. That did mean a lot to me. I will treasure this card from Mom for the rest of my life.

Angel, Tim and Katie came over on the 8th and brought a delicious chocolate birthday cake with strawberry icing. Katie was playing on the couch and fell. She smacked her lip on the edge of the coffee table. I felt horrible that she got hurt. She’s a tough little bugger, though. She barely cried and the ice Angel put on it helped to keep it from swelling and bruising too much.

November was pretty quiet the whole month, but not without mention.

On the 18th, Gail, the nurse at the day care called me to the side. She wanted to let me know that Mom’s perception of things is getting much worse. I knew it was, BUT, the way Gail showed me was a true eye-opener as to how much worse. An artist from the local art center visits the day care on Tuesdays and works with the clients. This art project was to draw an owl as they saw it from the picture the artist had displayed. Gail showed me the pictures of the owls all lined up on the counter. They were actually very good drawings. Then, she asked if I’d like to see Mom’s and she handed it to me. “Wow” was all I could muster before the tears started flowing. Mom’s drawing of the owl was a few circles for eyes with scribbles all around them, but in her mind, it probably looked just the the artist's picture.

I knew there had been a drastic change in Mom’s perception and understanding, that's normal with Alzheimer's, but seeing the pictures of the owls and the difference between her drawing and the other drawings truly made me realize how drastic the change was.

It made me realize I need to at least consider placement as an option, possibly before she becomes too weak and while she is still sociably aware, to help her adjust to a different environment. I even went as far as to visit a few ALFs beside the one I’ve used for respite care.

I nearly had my mind made up to make the change the weekend before Thanksgiving when Mom’s knee began to bother her and she couldn’t put weight on it. But I couldn’t bring myself to do anything so close to the holidays. She's back to using her walker.

We’ll see how things are after the holidays—or maybe we’ll see what this winter brings. I don’t know. I just know there are times when I don’t feel like I can do this anymore. Watching her decline is killing me, but I can’t bring myself to take her out of her own home. She may not remember it as such anymore, but my gut tells me that me being here with her is the only thing that she hangs onto. Maybe the same goes for me.

Progress Yes, But A Cure Would Be Better

I read this article “Progress Cited in Alzheimer’s Diagnosis” in The New York Times on October 14. Seems researchers are working on a blood test to detect Alzheimer’s disease. Though it’s too late for the millions of our elderly who are already in the severe to end stage of the disease, it would be wonderful if this blood test becomes something doctors will be able to use soon. Even with a 90% accuracy rating in its testing phase, it seems the blood test won’t be available to doctors for another “few” years.

There has been some talk about this test; some say they wouldn’t bother getting the test because they wouldn’t want to know if they would be tested positive for Alzheimer’s. Why? Because the medications used in Alzheimer’s treatment today, only slow down the process, if they work at all. For some, the medications aggravate the disease.

I’m not sure I would have the blood test when it would become available. The likelihood of me getting Alzheimer’s is high because both my parents had/have it.

Yes, this may be progress in learning about Alzheimer’s disease, but I’d rather see the scientist working on a cure for this horrible disease. Right now there is no cure, and the outcome, whether “predicted” or not would still be the same.

Mowing & Anxious to Read Into The Mist by Deborah Uetz

Today, we started working on filling in ruts on the path from my house to my Mom’s. With all the rainfall we’ve had lately, the water gushes down the path and has begun to make the ruts larger. We got a good bit done, but we had to stop working on that so we’d have time to get the mowing done at Mom’s house.

Two Feather loaded our riding mower on the wagon and put the push mower in the back of his Kawasaki Mule and we headed to Mom’s house to mow her yard. I mow the small side yard, front area by the sidewalk, and the circle around her flowerbed with the push mower while he mows the rest of the huge yard with the rider.

I trimmed the trumpet vine on the porch, edged the sidewalk, and pulled weeds while Two Feather finished mowing.

We took the mowers back to our house and rode back down to Mom’s to get the mail and paper and put the garbage out for collection. When we got back to Mom’s house, a package was sitting on the table on the porch. I was pleased that UPS had delivered the book I’d just purchased. I’ve heard so much about Deborah Uetz’s book, Into the Mist: When Someone You Love Has Alzheimer’s Disease, I just had to buy it. Can’t wait to start reading it.

This evening I called Angel to ask how Tim was doing. A few days after Mom was in the hospital, Tim went to the emergency room. He’d had a gall bladder attack. He’s scheduled for surgery on the 11th. Angel told me they were coming in this weekend again because she has a job interview. She’ll be leaving for back home on Sunday and Tim will be staying for his job interviews on Monday and Tuesday. They plan to move back to this area as soon as they acquire jobs here and sell their house in Mechanicsburg. YAY!!!

Anyway, Angel wants to visit Saturday with Mom. It will be Mom’s 84th birthday! Angel thought we could take Mom out for lunch or early dinner. Two Feather and I had thought about that too, but we figured we’d wait to see how Mom is that morning. The home health nurse and OT nurse are coming Saturday, too. They won’t be calling me until Friday night or Saturday morning to let me know when. So everything is sort of up in the air until I know when her therapy will be done. Either way, we’ll make sure Mom has a great birthday.

Forty Things An Alzheimer’s Caregiver Needs To Remember

All too often caregivers find themselves in situations where they constantly feel they need to explain what they are doing and why they are doing it. All too often they run into people, including family members, who just don’t understand Alzheimer’s Disease, and for the most part never will. All too often caregivers have more stress from these type situations than they do with the care giving itself.

These are just a few of many things caregivers need to remind themselves when taking on the responsibility of caring for a loved one. You are a caregiver for the purpose of providing security to your loved one and maintaining their health, welfare, safety, and dignity. Anything beyond that is not your responsibility.

Each Alzheimer’s patient is different from the next. No one person has the same reaction to a situation. Each situation is different--every moment. This list is to help all caregivers remember they are doing a good job in taking care of their loved ones, and to remind them not to be too hard on themselves.

1. I need to remember I am here to do a job and that job is to take care of my loved one.
2. I need to remember that I am doing the best thing I can possibly do for my loved one.
3. I need to remember my loved one comes first before all others.
4. I need to remember to keep my loved one safe.
5. I need to remember to keep my loved one fed.
6. I need to remember to keep my loved one warm.
7. I need to remember to keep my loved one clean.
8. I need to remember to keep my loved one healthy.
9. I need to remember to keep my loved one comfortable.
10. I need to remember to keep my loved one happy.
11. I need to remember to keep my loved one free of pain.
12. I need to remember to keep my loved one free of aggravation and aggression
13. I need to remember to keep my loved one free of anger and upsets
14. I need to remember to keep my loved one from being distracted.
15. I need to remember to keep my loved one in familiar surroundings.
16. I need to remember to keep my loved one stimulated.
17. I need to remember to keep my loved one from loud noises and busy environments.
18. I need to remember to keep my loved one feeling adequate and worthwhile.
19. I need to remember to keep my loved one remembering as long as possible.
20. I need to remember to find solutions before behavior problems appear.
21. I need to remember that I do not need to explain my decisions to those who don’t agree with my decision; the caregiver’s concerns/wishes should carry more weight.
22. I need to remember I do not need to explain why I have to keep my loved one on a schedule.
23. I need to remember I cannot make others accept what they do not want to accept.
24. I need to remember I do not need to be everyone's "excuse" for what they cannot do or do not understand.
25. I need to remember others are responsible for their own actions.
26. I need to remember I am only responsible for my own actions.
27. I need to remember I am only responsible for my loved one’s feelings and mine.
28. I need to remember I am not responsible for how often someone decides to visit.
29. I need to remember that not everyone is as flexible as I am.
30. I need to remember that not everyone is as patient as I am.
31. I need to remember that not everyone is as understanding as I am.
32. I need to remember that I shouldn’t withdraw from social activities.
33. I need to remember not to worry about tomorrow, but instead think about the moment.
34. I need to remember to quit worrying about what other’s think or say; I am the only one who knows what I’m capable of doing.
35. I need to remember not to be disappointed when I don’t receive help.
36. I need to remember to give myself permission to grieve the losses, but also focus on the good memories.
37. I need to remember my loved one feels my love and remind them they are loved and respected.
38. I need to remember to take care of myself.
39. I need to find time for myself.
40. I need to remember my spirit can’t be broken.

More often than not the responsibilities, problems, and feelings of a caregiver aren’t taken into consideration by those around them. If someone hasn’t told you you’re doing a good job in taking care of your loved one, read this list often to reassure yourself, and take this time to give yourself a pat on the back for doing the best job you can do.

There are times when you reach the point in your care giving where you need to learn to ignore problematic people and situations; continue to do what you’ve been doing for your loved one and make sure you take care of yourself as well. You cannot let people who don’t understand Alzheimer's Disease, and its many ups and downs, upset you and possibly endanger your health. If that happens, there would be no one to care for your loved one.

To all Alzheimer’s caregivers: Take a deep breath, read the 40 reminders often, and pat yourself on the back for sharing this disease of crossroads with your loved one until the road wanders no more.

Always remember: With Alzheimer’s Disease, the past is no longer, there is no future; there is only each moment. Cherish those moments, for they may be the last.

For more information about Alzheimer’s Disease visit the Alzheimer’s Association website.

Forty Things An Alzheimer’s Caregiver Needs To Remember has been published at Blogcritics.org in the Culture section.

Come Glow With Us—Light Up Our Lives

October 1 at 8:00 PM

I’m inviting all my friends, relatives, and other caregivers to shine a light on Alzheimer’s disease awareness. All you have to do is put up a string of Christmas light, turn on a porch light, or place an electric candle in your window today and turn them on at 8:00 PM.

Come Glow With Us is a campaign that was started to shed a little light on the thousands of primary caregivers who give of their time and their compassion, to ease the journey of those they love.

In many cases their work is unnoticed, unappreciated, unpaid.
They toil day after day, often in isolation, suffering along with their loved ones.

They are the invisible victims of Alzheimer and other long term illness.

The Come Glow with Us campaign began last year to mark the 100th anniversary of Dr Alois Alzheimer discovering the plaques and tangle traits of Alzheimer’s disease.

In response to our invitation “glowers” lit up the night skies from California to Florida, Vancouver to Newfoundland, (23 states and eight provinces were represented) as well as Ireland, England, Scotland and Australia.

This October 1 - we ask that you help us make the glow even brighter.
Place the spot light on dementias and light up our lives, so we know you care about those who someday, may be caring for you.

All you need do is place one string of Christmas lights somewhere prominent, and plug them in at 8 pm October 1.

Every hour that night - new sets of lights will glow as the clock turns eight in each time zone.

Give us hope of a better tomorrow - show you care - Come Glow With Us.

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!

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.

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.

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.

Back on Mom’s Schedule—Back to Unneeded Stress

Monday, August 27, 2007

It felt great sleeping in for two days but I’m back to waking up at 5:30 or 6:00 and back to sticking with Mom’s schedule. I woke her at the usual time of 6:30, washed and dressed her, took her blood glucose test for her diabetes, had her take her pills, and guided her out the door and into the car to take her to the Day Care.

The sun was shining on my deck when I arrived and Two Feather and I sat outside and enjoyed our morning cup of coffee together. Neither of us felt like doing much so we just sat and enjoyed the sun and talked about the projects we need to do around our house and Mom’s.

My flowerbeds are overgrown with weeds and wild grapevines from the woods surrounding the house have stretched into the yard and over the fence. When fall comes and trees and bushes lose their leaves, we’ll have a major project on our hands.

I called for estimates last week to have a few trees removed from Mom’s because they are a threat to the house and telephone and electric lines. I also asked for an estimate to have the leaning trees removed from behind my garage and along the side of my house. Better to be safe than sorry.

Two Feather and I talked about how we’ve neglected our house and yard because we don’t really have the time to take care of it after we take care of Mom’s place. We’ll eventually get the work done at our house. It may take some time, but we’ll whittle away at it little by little. We will have to start working on it in the next month or so in order to make any progress before winter sets in.

Today was a beautiful day, sun shining and not too humid, and discussing our thoughts on sprucing up the place gave us something to talk and think about. The time seemed to fly and before we knew it the time had come for me to leave to pick up Mom at the Day Care.

The nurses at the Day Care told me Mom didn’t have a good day. She was moody all day and had several incontinent accidents. That was apparent to me when I walked in because Mom had on the “spare clothing” I’d given the Day Care in case of accidents.

On the ride home, Mom’s mood didn’t seem to be any better. Mom didn’t remember that she had been cleaned and changed at Day Care. I guess one of the good things about Alzheimer’s disease is that the loved one forgets they were embarrassed. Unfortunately, the feeling of embarrassment seems to stick with them in an uncertain way. It changes their mood and they can’t remember why they’re angry, but the anger lingers.

Mom didn’t make it to the bathroom once we arrived at home, so I ended up putting her in the shower again. Then, she remembered what happened during the day and became angrier.

“I hate this,” she said. “I did this all day.”

“I know, Mom. Don’t worry about it. Sometimes we have accidents. Let’s get you cleaned up and you’ll feel better.”

She cried the entire time she was in the shower.

Needless to say, after those type incidents, making dinner and trying to eat is a challenge for the caregiver. What appetite one may have had, is gone. In most cases, the loved one normally forgets the incident, sits down to a nice meal, and wonders why you’re not eating dinner, too.

Mom’s appetite isn’t what it used to be. The diabetic diet isn’t the problem, but the amount of food is. It used to be that she could eat the limited card-deck-size piece of meat, the potato or starch, and the vegetables, and ask for more. Lately, I’m lucky if I can get her to eat half of that before she tells me she’s full. Tonight she ate only a few pieces of chicken, a few bites of baked potato, a few teaspoons full of applesauce, and no vegetables.

We sat at the kitchen table and talked for a few minutes and she began to doze as we talked. We were running a bit behind her normal schedule because of the shower, so by 5:45 she was ready for bed; by 6:00 I could hear her snoring through the baby monitor. She’d had a long, hard day with all her accidents and mood swings, and the continued louder pitch of her snoring told me she was totally exhausted.

Two Feather normally comes down to visit me after Mom is asleep. She’s been aware of this since I moved in and said she feels better when he’s here. She’s even told him he should move in, too, but he respects her too much to have her embarrassed by the possibility of him seeing her walking through the house half dressed at times. He always side-steps this offer by saying, “I appreciate the offer, Mother, but I need to take care of our house, too.” She’s content with that.

We sit upstairs and quietly talk for about 30 minutes and he goes back home. This evening because Mom and I were running behind schedule, his visit was later than normal. He came down around 6:30. Just before he was getting ready to leave at 7:00 PM Mom’s phone rang.

Everyone in the family knows Mom goes to bed early and has been directed to call my cell phone if they need to call after 4:30 PM, so I figured it was a telephone solicitor.

Boy was I wrong. It was my brother. He called to ask me why there were stakes and rope at the top of the path. I told him that after the recent storm the path was blocked with trees and Two Feather put up the stakes and rope because he’d be working down there with his chainsaw. He knows his grandchildren play in his yard and he wanted to make sure no one came near there when he began to work on cutting up the fallen trees.

“That’s not why you put them up,” he said. “You put them up to make a point!”

I’m so tire of my brother and his attitude. The only time he calls “me” is to bitch about something.

“What the hell point would I be trying to make by staking and roping off a path that you haven’t used in three years?” I said. “You haven’t used that path since you told me to tell Two Feather he had to cut the grass because you were going on vacation. You haven’t been back to cut the grass or do anything around Mom’s house since. Do you realize how ridiculous and childish you sound?”

“You put them up to make a point,” he repeated.

“So you’re calling me a liar?”

“Yes,” he said.

“Two Feather has never cut wood close to someone’s yard before. I don’t appreciate being called a liar. Excuse me for the fact that Two Feather shows consideration to everyone. I don’t need to explain to you what Two Feather or I do on Mom’s property, and I’m really sick of your childish nonsense. Why don’t you grow up? By the way, what time is it?” I asked.

“Seven, why?”

“What time does Mom go to bed?”

“Five.”

“So, why are you calling her home phone at 7:00 PM? You know to call my cell phone after 4:30. And since you called only to start childish nonsense again, let me remind you that you’re not to stop by the house without calling and verifying if it’s a convenient time.”

“There was no problem when Angel was there.”

“You don’t see barging in on someone else’s visit a problem, I’m sure. But problem or not, it’s a matter of courtesy toward my mother. I either don’t answer the phone because we’re not home or I’m busy with her. Busy can mean many things: She has company, I’m giving her a shower, cleaning up her bed after an accident, cleaning her up after an accident, or her mood and agitation level is bad. The last thing she needs is you just stopping by when we’re ‘busy’ with something like that.”

After a few more insults from my brother bringing up past garbage that has nothing to do with Mom and her illness, I gave up and hung up the phone. I’m so tired of his intimidation tactics and his attitude toward me, and his lack of consideration and courtesy toward my mother.

I’ve sent him information about Alzheimer’s Disease so he could get a better picture of what is going on; to help him understand. I even marked off the stages that she’s already been through. I’d think that he’d have some clue since my dad had this disease as well and died from it nearly 10 years ago.

Sometimes caregivers can explain until they’re blue in the face, the need to keep the loved ones on a schedule, the many things that can and usually do happen during the course of a day, the need to clean and change the loved one, the moods, the agitation, etc., but some people just don’t get it!

The End of My Respite Care Weekend

I slept in again this morning, which not only delayed but also put a halt to the idea Two Feather and I had for today. We thought about going to an open-air flea market in Kirwin Heights where we used to set up his Indian art. We haven’t been there for three years. It’s an early market, though, most vendors are set up at 6:00 AM and leave by 1:00 PM, so it was senseless for us to drive the 45 minutes knowing most of the vendors would be packing up to leave.

Two Feather and I spent the morning talking about how odd it felt to sit on our deck and enjoy our morning cups of coffee together as we did every morning before I moved in with Mom. We reminisced about the powwows and gatherings we had enjoyed and talked about what we might do with our time when the day comes that we’ll be together again.

That discussion didn’t last long because we both felt it was somewhat wrong to discuss a future when the alternative meant that Mom would no longer be here. Yes, we miss our life together, but neither of us would wish for the inevitable to come sooner in order for that future to happen. Our life together was and is precious but having Mom around is too.

We also talked about something that disturbed me on Saturday evening after I called to check to make sure things were running smoothly with Mom and Angel. My brother has been given specific instructions to call and arrange a time for his visits. He’s been told that if I don’t answer the phone we’re either not home or I’m busy with Mom. “Busy” could mean I’m giving her a shower, cleaning up a soiled bed, cleaning accidents on carpeting, or cleaning up Mom after an incontinent accident.

Lately, if I don’t answer the phone and call him back to his immediate satisfaction, he’s been showing up at the house unannounced. He’s found no one home and drives back to his house. I know this because he left a message saying that he stopped by and for us to call when we got back home. When he has shown up during one of the above mentioned busy times, I’ve called him when I’m finished and asked him not to just show up. He accusing me of “not letting” him see my mom. He tunes out what he doesn’t want to hear and exaggerates what he thinks he hears. His response has always been that he doesn’t have to listen to what I say, and his attitude is that he can do whatever he wants, whenever he wants, with no regard to anyone but himself.

The last thing Mom or I need is for him to push his weight around after dealing with one of the situations that I mentioned above. Each of those situations changes Mom’s mood and the mood that results from them is seldom easy to deal with. It takes her an hour or two to get over her anger of incontinence and her anger that she has to take a shower. Most Alzheimer’s patients despise getting in the shower. Any caregiver can tell you that performing daily hygiene is no easy task.

Saturday evening when I called Angel, she told me my brother “showed up” without receiving a call back. Needless to say, this put a damper on the only respite care I’ve had in more than a year. Mom isn’t comfortable with him visiting when I’m not around. I was a bit disappointed in the events that took place and unfortunately expressed that disappointed to my daughter. If I had paid a home health nurse to stay with Mom, that person wouldn’t have known my brother from a rock, and therefore would not be obligated to open the door. I did however understand that Angel was put between a rock and a hard place trying to enforce the simple request I’ve made to my brother, over and over again. She didn’t want to deal with him any more than I do. She’s heard about the outrageous nonsense I deal with from him, and sometimes it’s better to totally ignore people who just don’t get it.

Rather than cause a scene, in front of my mother, and her grandmother, she told him he could visit for a little while, but he’d have to leave soon because she was getting ready to make Mom’s lunch.

Not only did he not comply with my request of him not just showing up, but also he infringed on the time my daughter took out of her busy life (driving four hours from her home) to share with her grandmother. Both, in my opinion, were just more representations of the rudeness and lack of consideration my brother shows. It never ceases to amaze me why some people think they aren’t obligated to comply with the guidelines set forth by the caregiver for the comfort, health, and welfare of a loved one.

I returned to Mom’s house at 3:00 PM so Angel could drive the four hours and be home before dark. She didn’t leave until 4:00 due to the frustration I showed and the discussion we had over this matter. Even leaving an hour later would have put her at home before dark and before Katie’s bedtime at 8:00 PM.

When I didn’t receive a call from Angel by 9:00 to tell me she arrived home safely, I became concerned and called her cell phone. She called back about fifteen minutes later. I could hear the frustration in her voice. Some of it may have been from the conversation we had, but most of it was because she was still driving and hadn’t made it home yet. She’d gone through Pittsburgh, instead of taking the turnpike from Cranberry, and she hadn’t realized one of the Pittsburgh tunnels had been closed. It took her two hours to drive the long way around Pittsburgh to get back near the turnpike. She missed her daughter all weekend, and she missed getting home on time to put her in bed for the night. Her frustration turned to tears and I couldn’t help but feel horribly guilty that I’d taken her away from her daughter and husband for a weekend.

The conversation she and I had before she left wasn’t important now. We both agreed that things should be different with my brother, but regardless of how anything is approached with him, he puts up an automatic defense attitude that gets in the way of any conversation, especially when it comes to me.

Mom had a fairly decent weekend while Angel was there. No accidents. No messes to clean up. Angel got a small taste of what I deal with each and every day taking care of Mom. She also got a taste of what it’s like to miss her own normalcy too. She told me she doesn’t know how I do what I do, and I told her I do it because I love my mother. She reminded me that I should take more time like this so that I live long enough to enjoy a life after Mom. And I reminded her that sometimes it’s easier just to continue what I’m doing rather than deal with the added problems resulting from leaving Mom for a day or so.

It’s difficult not feeling guilty for wanting a day to spend with my significant other, or just a day to spend on my own. The repercussions that result from me being away add to the already difficult task of care giving. Two nights and one day without my presence set Mom back a few notches. All evening she asked if I was going to stay the night and she cried. She said, it was nice visiting with Angel, but she didn’t want me to be away from her again. She was afraid I wasn’t going to come back. She told me she wasn’t comfortable with my brother visiting when I wasn’t home. All evening, after she was in bed, she kept calling out to me to make sure I was still around and to make sure no one else was in the house. Each time she called out for me, I’d go downstairs and reassure her that I’m home and wasn’t leaving again and the only people in the house were us. Five hours, every twenty minutes or so, I’d repeat the same thing: go downstairs, tell her I’m here and staying, we’re the only people in the house, and I’d go back upstairs. She finally fell asleep, exhausted, around 10:00 PM.

Going away for a weekend is just not worth it to me if it’s going to affect Mom this way. I care more about her than I do myself and the anguish caused to her by me being gone for a few days does me no good either. We’ll see what tomorrow brings, but I can place bets that tomorrow I’ll be asked if I’m staying the night again. This is just one more perfect example of how changing the schedule or routine of an Alzheimer’s patient can throw them into a more confused state.

Health care workers tell caregivers to take time like this to relax and recoup some strength. The nurses at the Day Care keep telling me I need to take time for myself. They say, “It may confuse her or make her angry, but she’ll get over it. She’ll forget.” Granted I need to keep up my own health in order to take care of Mom, and respite time allows the caregiver to relax and unwind. But whether Mom forgets within a few days that I was away or not, I just don’t know if I agree that it’s worth adding to her confusion and causing her unneeded anxiety. I’d rather her feel comfortable and secure and her know that I’ll be here until her last day on this earth. She knows she can depend on me and I can’t take that security from her, ever again.