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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.

Monday, March 09, 2009

Nothing Ever Stays The Same

The frequency of my posts most certainly hasn’t increased and neither has my visits to other’s blogs to keep updated on what’s been happening in everyone else’s life. It’s sad. Sad, because I come back and find that Robyn lost her mother in January during my absence. I’m so sorry that I wasn’t there for you, Robyn. My thoughts and prayers are with you and your family.

I was finding it more and more difficult to find time to spend on the computer, but to come back and read the news of Robyn’s mom and find that many of my friends have quit blogging has saddened me even more. Nothing ever stays the same.

I’ve felt lost lately. During the whole month of January, I had bronchitis and pneumonia again. I placed Mom in the assisted living from January 5th through the 25th so I might be able to recuperate and gain a little energy to bring her back home to continue on this journey of Alzheimer’s with her. We were snowed and iced in the whole week after I brought her home. Unable to get off this little mountain, I spent the last week of January concocting ways to keep her and myself busy. We did everything from coloring to baking and I found myself exhausted again by the first week of February.

Once the driveway was cleared, Mom and I were back on our routine schedule—I took her to day care, spent the days trying to catch up on sleep, grocery shopping, preparing everything for taxes, and all the normal running that one does to keep two households afloat.

On February 11th, on the way to day care, Mom complained of a headache, nausea, and dizziness. By the time we reached the front door of the day care, her legs became weak and she had turned ashen white. The caretakers at the day care grabbed a wheelchair for her to sit for a moment. A few minutes later we had her back in the car and I was on my way to the hospital with her. At the hospital, after routine blood tests, chest x-ray, and CAT scan, the ER doctor said she had a very slight start of a UTI, a very slight start of pneumonia, and no indication of stroke. He prescribed antibiotics and sent her home. He said she could continue going to day care because the antibiotics would knock both the UTI and pneumonia out within three or four days since they were caught very early.

Mom seemed to be doing fine other than an increase in her confusion. Monday, February 16th when I arrived at day care to pick her up, the nurse greeted me at the door. Mom was in a wheelchair and the nurse said Mom was having a difficult time walking and her confusion had increased. It took three of the caretakers to get her to the bathroom during the day and two of us to get her into the car. I called Two Feather to meet me at Mom’s house and he helped get her out of the car, into the house, and onto a chair at the kitchen table. Her legs were very weak, she was out of breath, and she was complaining of nausea and a headache. I called her doctor to explain what was going on and told him I was going to call the ambulance to have her taken to the hospital.

More of the same tests that were run six days earlier came back negative—no UTI, no pneumonia, and no sign of stroke. Yet, Mom was increasingly confused and her legs were increasingly weaker. She was sent down to physical therapy each of the four days she was hospitalized. Her doctor suggested I have her sent to a skilled nursing facility for continued physical therapy. So, on February 19th, Mom was transported to the skilled floor above where she had been in assisted living while I recuperated when I was ill.

Mom’s been there ever since—in a wheelchair. She’s receiving speech, occupational, and physical therapy every day and will through the end of March.

It’s been three weeks since Mom has been home and I find it increasingly difficult to deal with. It’s not like placing her for a respite care where I know when she’s coming home. It’s heartbreaking. I visit her every day. Some days are good visits when I wheel her down to the daily activity, play bingo, or we sit in her room and talk. Other days are excruciating when she cries and begs me to take her home. Good visit or bad, I always come back home feeling empty inside except for the overwhelming feeling that creeps in that I’ve let her down.

I don’t know what will come from her therapy, what will happen next, or whether or not she will regain her strength, but I do know that walking into her empty house doesn’t prepare me for any of it. Everything in the house is the same—except she’s not here. I walk around glancing at her things and cry constantly. Visiting her every day is not the same as having her home. I miss her terribly.


I love you, Mom.

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Sunday, December 07, 2008

Getting That Christmas Spirit

I’m trying to get into the Christmas Spirit. I even put up Christmas lights in the windows in my rooms upstairs to brighten my spirit. I have nearly all my Christmas shopping finished. That’s not saying much since everyone who knows me knows that I normally have my shopping done by August. At least, I used to.

I have everything wrapped and boxed and ready to send to Stacey and her family in Alabama. Hoping to get that in the mail tomorrow after Two and I deliver the live tree to the day care.

Today was Two’s and my 6th Anniversary. He came down and had coffee with me this morning and after Mom was up and about he brought the Christmas tree upstairs from the basement and went home.

I spent most of the morning sorting through lights and chuckling because I was going through the same aggravation that Angel and Tim went through with their lights yesterday. Only mine was worse. I had all my lights working and had them on the tree, then, one minute the lights were lit and half the string was blinking and the next minute they lost their glow. I ended up taking all of them off and sitting for another hour fixing strings of lights. I finally got them working again and put them back on the tree just before dinner was ready.

I made a roast for an early 2:00 dinner and Two came back down to Mom’s and ate dinner with us. After dinner I had planned for Mom and I to decorate the tree. She had no interest in helping decorate; she just wanted to sit and watch. I think she enjoyed me struggling with the lights. She laughed a few times.

Never before has it ever taken me so long to put up a Christmas tree. After it was finished, Mom and I had a light snack. She couldn’t wait to go to bed and I couldn’t wait to come upstairs to let loose the tears that I’d been holding in all day.

It felt so odd decorating the tree by myself. It was always a family project and there was always a lot of talking and singing and laughing. The only person there to share it with was Mom, who had no interest in what was going on. She didn’t comprehend that Christmas was near, what the tree was for, and for that matter, I’m not sure she even knows what Christmas means anymore.

After a long hard cry, I sat on the bed and looked at the Christmas lights in my window. I’m not sure what this holiday season or the winter may bring, but the lights in the window helped brighten my spirit. I know that, if even for a moment, Mom enjoyed watching me decorate the tree, the time it took was worth it. When it was finished, she said it was the prettiest tree she’s ever seen. For now, I’ll take all those moments I can get.

Happy Anniversary Two! Happy Holidays to everyone. I'll try to post more frequently.

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Saturday, December 06, 2008

The Last Month of the Year

Here it is the last month of the year and I sit wondering where the year has gone. As I look back at some of my earlier posts, I become more and more aware of Mom’s mental and physical decline. She rarely knows my name. She sometimes know I’m her daughter, and even when she utters the word, she doesn’t comprehend that me being her daughter means that she is my mother.

Most of the time, Mom has no idea where she is, even when she’s home, and I’m just a nice, pretty lady who sits and talks with her and treats her very good.

We’re no longer living with a moment-to-moment memory—we’re living second-to-second. It is so heartbreaking watching Alzheimer’s take her mind.

The day care is decorating for Christmas. They already have an artificial tree decorated. On Friday, they said they wanted a small, real pine tree (a Charlie Brown tree) to set beside a cardboard fireplace decoration. I told them I could help them with that. Two and I will be cutting down a small tree and donating it to the day care on Monday.

Mom and I went to Angel’s house Saturday to watch Angel and Tim put up their Christmas tree. Their light strings were giving them problems, so we got to visit while they sorted through what worked and what didn’t. Katie was napping most of the time we were there, but we had the chance to visit with her when she woke up. She was putting together a puzzle of the United States just before we left.

I’m sure I’ll get to see their tree decorated sometime during the holidays. The tree they bought was beautifully shaped. I’m sure by the end of the evening it was filled with beautiful lights and ornaments as well.

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Sunday, November 30, 2008

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.

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Friday, October 31, 2008

A Long Time Coming—August, September, October Update

I’ve had these writings in draft for quite some time, so they are a long time coming. Sorry I didn’t post them sooner.

I’m having a really difficult time finding the words to catch up and I’ve been in sort of a funk lately. So, I’m going to jam the last few months in as quickly and shortly as possible. Yeah right! When were any of my posts quick and short? LOL I’ve at least kept in touch and let you all know I’m still around by commenting on your blogs. I really do keep all of you in my thoughts and prayers each day even though I may not be around much to mention it.

AUGUST
Here it goes. Stacey and her family left on August 1st to go back home to Alabama. Her birthday was the 3rd and I’m glad I called to wish her a Happy Birthday. That’s all I’ll say about that.

The first week of August, we struck a deal with a different logging company to use our log landing, as long as they cut in a driveway for our soon-to-be new neighbors who bought the property that connects to Mom’s.

That first week was also the week we decided to let Ricky’s cage door open and let him roam in and out. If he were to go back to the woods, then that’s what is supposed to be. We nursed him to health and he was strong enough to be on his own.

Each evening we’d sit by the fire pit outside and call for him. Within a few minutes he crawled out from the bushes and crawled up Two’s leg. He’d play with our dog and run back and forth on the swing between us, jump down and scurry off.

These were the last pictures of Ricky taken on August 7th.

He climbed up Two’s leg, hugged his little white friend, climbed on my shoulder and gave me a kiss, then climbed on top of the swing.

The next night he didn’t come when we called. Looking at the pictures now, I think he was saying goodbye to us.

At the end of that week, Stacey called and said she’d been to the hospital. She had a lump on her throat. It seemed to appear over night and was the size of a plum. They immediately suspected thyroid cancer and told her to see her regular doctor and have tests scheduled. It was another week before any tests were done. The next week was hell on everyone waiting for the results. They were inconclusive and the doctor recommended she see a specialist and have more thyroid tests done. Three weeks later and still no answer and the specialist couldn’t see her until January 09. Stacey said she would call the specialist every day until she got an appointment sooner. Finally they set an appointment for the first week of October.

It’s probably a good thing I gave in and took Mom to the ALF the last few days of July. I had to call them and ask if she could stay the whole month of August. I’d gone back to my doctor the last day of July because I felt much worse. He prescribed a stronger antibiotic, inhalers to puff on six times a day, and I was ordered to bed rest.

I spent most of the month of August in bed sick, in and out of sleep, or on the couch doing the same. Finally by the 25th, I was able to breath, without my chest feeling like a Mac truck was sitting on it, my doctor cleared me from bed rest and said I was lucky. When I asked if I could take a short two-hour trip on Labor Day weekend, he said I could as long as I didn’t overexert myself.

Thank you to all who called to check on me. That was so very thoughtful of you.

I had four more days before the weekend and I planned to stay rested so Two and I could go to the last Powwow we planned to attend this year. It was in Columbus, Ohio. We left Friday the 29th. He danced his heart out. I watched mostly; dancing only a few dances. We’d planned to come home Tuesday, September 2nd but I started feeling lousy and we came home on Sunday the 31st instead.

SEPTEMBER
Monday, September 1st I took my time cleaning up a bit around Mom’s and my house so everything was fresh and clean when I picked her up from the ALF on the 2nd. Monday when I swept the leaves off the porch, Mom’s cat was sick. He was coughing and lying in the sun on the gravel along the side of the driveway. I made an appointment with the vet. They weren’t able to see him until Friday.

I picked up Mom from the ALF on the 2nd. She was so very pleased to see me and happy that she was coming home. I took her dog to the groomer before I picked her up and we picked him up before I took her home. She was excited to see him, too.

Mom went back to day care on the 3rd and I picked her up early to take her for her doctor’s appointment. Her doctor told me I’m doing a wonderful job with Mom and was glad to see I’d taken a month off from care giving. I told him I didn’t have a choice—I had pneumonia. He suggested I take a week each month from now on and then asked if I was considering placing her. “You’ve done wonderful, Joanne, but it sounds like it’s time you take care of yourself.” I told him I’d let him know if I get to that point. He nodded and said, “Please take care of yourself as well as you do your Mom.” I said I would try.

On the 4th, we found Mom’s cat, Tig, dead alongside the driveway; his favorite spot for sunning himself. Two buried Tig before Mom came home from day care and she never noticed he wasn’t around.

September 7th Two’s Kawasaki Mule broke down. The front dry shaft broke. On the 10th, the Kawasaki shop picked it up for repair.

Finally, September 11th the doctor took a biopsy of Stacey’s lump. He said the results would take 7-14 days. Good grief! It took five weeks just to get a biopsy! Now waiting another two weeks before any results. So much for catching things and getting something done QUICK!

September 12th I took my dog to the vet. She started limping a few days before and her limp was worse. An x-ray showed a small fracture in her shoulder. While I was waiting for the vet to put a full leg splint on her, Tim, Angel’s husband called me. I knew immediately something was wrong. Angel was at the emergency room with chest pain. The next words I heard were “possible heart attack.” The vet came in and saw me crying. My sweet little dog was all wrapped up and ready to go and he handed her to me.

So, after writing a check for $200+, I took her home and dropped her off with Two and headed to the ER to see Angel. On the way to the hospital, nothing I’d been through the last few months mattered; my daughters were having health problems now. I pulled off the road, cried, and prayed, “I don’t know what you have in store for me, and I don’t care, please just let Angel and Stacey be okay.”

I sat with Angel at the ER for a little over an hour. The cardiologist came in and explained that her heart was fine. I don’t recall what the name of the problem was, but it had something to do with her chest wall muscles. I’m so happy her heart is okay. It was a real scare for us since her paternal grandfather died from a heart attack and her father has had several heart attacks and by-pass surgeries. Angel was released that afternoon.

On the way home I thanked the Creator for a good prognosis for Angel and prayed Stacey would hear good news as well...SOON. With all that had happened from July until now, I couldn’t help but allow the question to run through my mind, “What next?”

I got that answer on the 14th. Just seconds before the Steelers kick off at 8:00 PM, the power went out from the high winds we were having. Thank goodness Mom had already been sleeping for a few hours. She had no idea the power went out. For fear that I wouldn’t hear her, since the monitor wasn’t working, I went downstairs and tried to sleep on the couch. If you saw my Mom’s couch, you’d know why I didn’t sleep a wink that night. It’s a 70’s (maybe even a 60’s) couch. It’s hard and itchy, with a rough rug-looking print, and uncomfortable as sitting on a wood step with gravel on it. But it’s in perfect condition. LOL

On the 15th, I took Mom to day care. They did have power; one of the few scattered places in the area that did. I called the ALF and asked if they had a bed for Mom. They did and I told them I would bring her in after day care the next day if the power didn’t come back on. Mom faired fine Monday evening at home. I was on the couch again. Tuesday I took her to the ALF after day care and promised I would bring her home as soon as the power was on. I didn’t feel comfortable keeping her home since there was no water, light, and no way to cook. It’s one thing for me to walk around in the dark, snack on whatever might be available, and rough it for a few days, but Mom needed to be where she would be safe—physically and medically. The power came on at my house late Wednesday afternoon. When I went to Mom’s to check it, the power was still off. That didn’t make sense to me since my power lines came from the pole by her house. I called the power company, but with all the outages in the area, I received only a recording. Thursday, I finally got through and they said they’d have someone out by Saturday. I went to see Mom and told her she would most likely be there until Saturday. She was fine with that and went back to playing cards with the ladies.

On Saturday the power company came and said there was electric to the pole but there was still no power to the house. After they checked further, they found the line had been loose on the side of the house. Once they shored the line, we had power. I picked Mom up and brought her home. Good thing was that Mom was safe and our power was back on. Bad thing was we lost everything in all our freezers.

September 27th, Mom and I went to visit my Uncle Joe at the nursing home. It was his 83rd birthday. He loved his new shirts and pants we bought him. I served everyone on his floor a piece of the sheet cake I took in for his birthday.

The 28th was Two’s birthday. I baked him a cake. Trish, Gabe, Evan, Bob, Cecilia, and Landon came to visit him. Trish and Bob are two of Two’s six kids and Evan and Landon are two of his eleven grandchildren. It was good seeing all of them again.

OCTOBER
October started with about the same trend of the last few months. On the 1st, the riding mower broke down just as Two made the first pass of Mom’s yard. I called the mower service and they picked it up that afternoon. After they left, I sat and had a very long, hard cry, again. It seemed everything was falling apart; me, my daughters, the mule, the mower, the power—one thing after another. I wouldn’t let my mind entertain the question, “what’s next?” Instead, I said, “That’s enough. I give up. I’m tired and I just don’t care what’s next.”

I think the “I don’t care” attitude must have changed things a bit. On October 2nd, Stacey called and said the biopsy was negative and she would have to have it checked periodically to make sure it stays that way. I was so happy that she finally received results and it was good news. Both my daughters are going to be okay. On the 3rd, both the mule and the mower were fixed and delivered back home.

Angel, Tim, Katie, Two and I took Mom out to lunch on the 5th to celebrate her 85th birthday, which would be on the 6th.

The rest of October was pretty quiet. We went to see Uncle Joe a few more times and Mom dressed up as a cook for the Halloween party at day care.

All in all, October wasn’t too bad.

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Saturday, October 11, 2008

Some Fun, Some Not So Fun, Some Sad--July Update

July began with me not feeling well. I was aching from head to toe. There was no cold or sneezing, just a deep congested cough coming straight from my chest. I knew immediately the weather in June made a home in my lungs with bronchitis. An appointment with my doctor and a chest x-ray on the 15th confirmed it. I was put on antibiotics for two weeks.

My daughter, Stacey, and her family came up from Alabama for a visit on the 24th. They visited with us all day on the 25th while Mom was at club. Two Feather was cleaning up the branches from the big oak that was left lay by the loggers in the lower yard.



Stacey’s husband, Dennis, was throwing the small branches onto the wagon and Stacey drove the Mule behind the house where we threw the branches and brush over the hill in a large gully.



Trinity and Quenton helped throw branches, too. Tux, Stacey's dog, had to get in the action, too. They were having fun helping Pap Pap and Bammaw clean up GG’s (great grandma’s) yard.

On the 26th, Stacey, Dennis, Trinity, and Quenton came over and spent the entire day visiting with Mom and on the 27th they came back again with Angel, Tim and Katie and visited most of the day.



I managed to get everyone in the picture. Of course, there are two people missing in the picture; I was taking the picture and Two Feather ran up to our house to bring Ricky the raccoon down to meet the family.

Angel and Katie met Ricky in June. This is a picture of them.


The kids loved petting him.



Mom thought he was adorable and held him on her lap for a while. Her eyes lit up when he crawled onto her shoulder and squeaked.



She thought it was great that we nursed him back to health and that he was so small, cute, and cuddly. She just loved him.



I snapped of shot of Angel and Stacey playing ring-around-the-rosy with Katie, Trinity, and Quenton. Shortly after, the girls announced they were leaving because they knew Mom was getting tired. They planned to go out for dinner and left so I could get Mom something to eat and keep her on her schedule. It’s times like this that I miss being able to get up and go and spend more time with my kids and grandkids, but I’m very thankful that they recognize the signs of Mom growing tired and understand the need to keep her on her schedule. Mom is only able to take so much out-of-routine and more-than-normal crowd around her for so long. You caregivers know what I mean; anything and anyone out of the ordinary seems to mentally fatigue our loved ones that much more.

Monday the 28th I took Mom to day care and I went to my doctor because my bronchitis wasn’t much better. He gave me another seven-day prescription and insisted that I take care of myself for a change. I wasn’t getting the rest I needed for the antibiotics to work properly. It was either place Mom in the ALF or I would end up in the hospital and have to place her anyway. I called the ALF to take her in the next morning. After I dropped her off, I went to my house and slept and rested the rest of that day and all of the next.

Angel and Stacey wanted to go to the local amusement park, Kennywood, on the 30th. Angel, Tim, and Katie were meeting us there after work. I told them Two Feather and I would go along and watch the grandkids while my daughters and their husbands rode rides that the munchkins were too small for. After all, I’d only be walking around and the temperature was in the high 80’s so what harm could it do?

Two and I took the kids to Kiddieland to ride the kid’s rides. Trinity, Quenton, and Katie had so much fun riding the rides. I rode a few of the rides with them.

While Angel, Tim, Stacey, and Dennis rode the roller coasters, Two and I bought the kids drinks and a funnel cake with powdered sugar on it. Between sharing the funnel cake and talking with our grandchildren, we kept them occupied until my daughters were off the rides.



I thought it was cute that Angel kept calling me from the cell phone asking if we and the kids were okay and letting me know where they were in line and how long it would be before they came back.

The day was beautiful. I even road a few of the rides, too. I rode on the King Kahuna, which swings up in the air and upside down. There was a harness that came down over the shoulders and locked in position and it had handgrips to hold onto. It wasn’t too bad.

I love amusement parks! I love roller coasters and thrilling rides, but I can’t go on those type rides anymore since I have a plate in my neck. I’ve never been afraid to go on any ride…ever.

The last ride of the day, before we left, was the Phantom’s Revenge. I’m thankful Angel had gone on it prior to her convincing me to go on one last ride. She said I’d love it and she went on it with me. She hadn’t bothered to tell me there was no harness or handgrips. It was a long panel of seats in a row—something like movie theater seats. The only difference was it had a skimpy seatbelt and it swung high up in the air. Not too bad, I thought as it started swinging. Then, Angel said, “It’s not over yet!” When I asked, “What do you mean?” She giggled and said, “You’ll see.”

The ride swung higher and higher, and my heart felt like it was in my throat when the next swoop took us so high that we were facing the cement beneath us. I couldn’t wait for the ride to be over! Never in all my years of riding amusement park rides has there ever been a ride I wouldn’t go on again. There is now! I won’t even repeat what came out of my mouth as my heart jumped in my throat with each swing. When I walked up to Two after I got off the ride, I said, “That was terrifying! There was nothing to hold on to. Never again!”

Angel asked someone take a picture of all of us before we left the park. I'll have to get that picture from her.

It felt good to get home, take a hot shower, and cuddle up on the couch. I was tired from walking all day, but we had a wonderful time.

On the 31st I asked everyone to meet us at a Mexican restaurant for dinner. I wanted to take them all out to dinner to celebrate Angel and Tim’s wedding anniversary (which was on the 29th)
and Stacey’s birthday (which would be on August 3rd). Stacey was leaving on Friday morning and I wanted to be able to spend time with everyone before she left.

All in all, July wasn’t too, too bad. My bleeding ulcer is being treated with two medications. The abnormality in my blood was diagnosed and I had another small surgery at the beginning of the month. There are a few other things I need to take care of that I wouldn’t mind telling my friends about, but I really don’t feel comfortable putting it out here for nosey eyes to read. Let’s just say, things are going as well as can be expected and I will persevere!

On another note, a dear friend of ours passed away, another friend’s daughter had a gorgeous baby girl, our loving cat, Coffee, died this month, and the logging was completed on July 7th.

Be back as soon as possible with the next update. I’ll try to cram August and September into one post so I can get back to regular posting. Keeping all of you in my prayers.

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Friday, October 03, 2008

When It Rains, It Pours--June

The month of June did exactly that – poured.

June was a busy month all the way around. Two and I talked about going to a few Powwows this summer and worked toward spending a few weekends together. Sort of like getting some of our life back—but not. All of you who had been and still are care giving know what I mean.

The first Powwow was at the beginning of June. It was a powwow we hadn’t attended in four years. We planned to take Mom with us, but when we called about facilities and conveniences for her, we were told there were no bathrooms close to the Powwow circle and the camping was a half-mile from the circle. While on the phone, the Powwow director asked if Two Feather could set up his Indian art since we were planning to go. After thrashing around the idea for a few days, I decided that the best place for Mom would be at the ALF for that weekend. There would be no way I could keep and eye on her, help Two with his booth, dance, and get her to the bathrooms and camper a half-mile away when she needed to go.

We enjoyed the Powwow immensely. Two was gifted highly and honored by the lead lady dancer, a Cherokee woman from Oklahoma. She gifted me as well. It was a very spiritual and relaxing weekend.

Here is a picture of Two Feather’s set up at the Powwow.


Mom did fine in the ALF and enjoyed seeing her friends there again.

The rest of June was filled with the sound of chain saws and trees falling. I decided to have a selective cut logging (14" or more in diameter) done on the property in order to put some use to the larger and older trees rather than have them die or blown down in storms. The logging started June 11. All I’ll say about the logging is to make sure “everything you expect” is in the contract.

They knew the terrain would require a bulldozer to cut in trails, but they wanted to cut corners and not bring one in. That resulted in them ripping up the yard and damaging the block foundation of the barn before they finally decided to bring in a dozer. Also in the process, one of the logging trucks ripped the cable line off the house and we had no cable or TV for nearly two weeks. (One of the reasons I hadn’t posted anything in June). Comcast cable finally got the cable repaired and didn’t charge us, but the barn damage became a two-month-long issue with the logging company owner, who would not take responsibility. One of the Amish workers who ran the bulldozer ended up paying for the damage since his boss wouldn't.

Here is a picture of just one pile of logs brought in before it was loaded on the logging trucks.

I wouldn’t recommend the logging company I hired. In fact, I won’t even mention the name, but I would recommend Detweiler’s Wood Products of Kennerdell, PA. Mervin Detweiler IS a man of his word.

During the time of the logging, Two and I were traveling back and forth from our house to Mom’s on his Kawasaki Mule while she was at day care. One early morning on the way to Mom’s we saw a small animal move its way slowly across our path. I got off the Mule and walked to the edge of the path and found a fairly young, weak baby raccoon. He couldn’t have been more than a few weeks old, if that. He was very skinny and clumsy. Either he had fallen or had been pushed out of the nest by the mother. We picked him up and took him up to our house to see what we could do for him.

This is what he looked like when we took him home before he was cleaned up.


After a quick exam of the scrawny little masked creature, we found he had ticks in his ears and between his toes. We put Bag Balm on all the ticks and within a few hours they had backed out and died. I gave him a warm bath and wrapped him in an old towel to keep him warm and Two Feather named him Ricky. We figured we’d try to nurse him back to health and give him a fighting chance.

This is Ricky after he was all cleaned up. He's cleaning himself and our dog is curious about this new little furry creature in our kitchen.


We had an old wire dog-training cage in our garage and put an old blanket in it for him to sleep on. He had to be to force fed with a dropper because he was so weak. Two Feather and I were planning for our second Powwow the following weekend, so we had to somehow get Ricky on solid food before we left. We had six days to accomplish that.

The morning after we found him we thought we might lose him. He was lethargic and barely breathing. We took him out of the cage, wrapped him in a warm towel and continued to dribble milk in his mouth every 20 minutes. By afternoon he was much better. He was up stumbling around the house and curious about our little white Maltese. By the end of the second day we had him drinking milk from a baby bottle, he was more stable and running around the house playing with our dog.

Nose to nose.


Every time we called his name, he’d make the cutest squeaking or chirping sound. By the fourth day he was gaining some weight, getting frisky with our dog, giving me kisses on the cheek when I asked for a kiss, squeaking when he wanted fed, and came running when he heard his name. Ricky would crawl up Two Feather’s pant leg and sit on his lap, or crawl up to his shoulder and sit on his shoulder. He would make the cutest chatter or chirping sound.

Two days were left before it was time for us to go to our second Powwow. Ricky was still drinking out of the bottle but wouldn’t drink out of a bowl. We couldn’t leave milk in a bowl to spoil over the weekend anyway, so we had to get him on solid food.

The day before we left he finally drank out of a bowl. I decided to get some soft canned cat food to put in the bowl for the weekend and hope he ate. If he didn’t eat, he wouldn’t have been any worse off than when we found him. He turned his nose up at the cat food and squealed for his bottle. We fed him one last bottle before we left for the weekend.

The second Powwow we attended was in Farmington, Pennsylvania. The Powwow this year was in honor of the celebration of the birthday of the two-year-old white buffalo born at the Woodland Zoo. We camped at the edge of the Powwow grounds in direct view of the white buffalo. The zoo named the buffalo Miracle and its color has not changed to brown; by Indian belief, if a buffalo is born white and stays white, it is the sacred buffalo that will bring all races of man together.

At both Powwows the Longest Walk II participants were there. It was good to support them in their efforts of keeping Native American traditions alive and raise the awareness of Indian culture.

It was a very special weekend. Two Feather and I enjoyed the Powwow, dancing, watching the buffalo, and we met some very special people that weekend.

When we returned home, we were greeted with little squeals from Ricky when he heard his name. Nearly all the cat food was gone. He had done just fine! He climbed up the side of the cage by the door and squealed until we let him out. Once he was out the door, he climbed up Two Feather’s pant leg and chest and sat on his shoulder chattering.

During the logging and the Powwows, June was full of rain. It seemed the puddles didn’t get a chance to dry before more rain came to make more puddles and mud. The dampness and chill played havoc with my body. That brings us to July.

I’ll be back very soon with another update.

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Thursday, September 11, 2008

It's Been A Long Three Months -- Catching Up -- May

It’s been a long three months!!! A lot has happened since I last posted. I apologize for the worry I had caused all of you dear friends and faithful readers. Had I felt well enough to post before now, I would have.

Let me first thank all of you for your concern, e-mails, notes and phone calls. You are all amazing people and it does a heart good to know there are so many wonderful caring people out there. Thank you!!!!

I suppose I need to bring everyone up to date. I’ll do that with several smaller posts rather than ramble on for pages since it’s been so long since I updated.

Let me start by telling you what took place in the last few weeks of May after I posted last. Believe me, this alone will be long enough for now.

Two Feather did set up his Native American art at the Nationality Day Festival between May 16-18th. Our friends, Ed and Ellen Strano, of Strano Remodeling offered Two Feather half of their store front in town so Two Feather could set up inside.

I scheduled a stay at the ALF for Mom between May 15th and the 26th so Two and I could work together at the festival and go to the Memorial Day Weekend Powwow in Columbus, Ohio the following weekend.

The turn out for Nationality Days was great! The Beaver County Times featured Two Feather in the Saturday morning paper and even more people showed up to see his art after that.



He sold his Indian art and I sat outside the storefront and did Indian face painting on faces of children and adults. During the three days, I painted more than 150 faces and Two Feather did well selling his art and talking to visitors about Indian lore.

Angel, Tim, Katie and Tim’s parents came to the festival on Sunday so Two and I could give Katie her birthday present. Katie’s birthday was on Friday the 16th. She turned two! Since we were set up at the festival from morning until late evening, they all came to see us on Sunday.


Katie loved her birthday present and loved getting her face painted. Believe it or not, out of all the faces I painted during the weekend, Katie was the only one who sat completely still as I painted. I painted a butterfly on her face. Butterfly is the Indian name Two Feather gave her.



The Nationality Days weekend was wonderful!

Between May 19th and 22nd we packed the camper and got everything ready for our Memorial Day Weekend Powwow in Columbus, Ohio.
Just before we were ready to leave on Friday, my neighbor called and informed us that her brother had passed away. You’ve heard me speak of him before. He was the son of the 102-year-old neighbor who passed away in January. We’ll miss seeing Billy standing by the driveway waving to us as we drive by.

Two and I had a great time at the Memorial Day Powwow. Angel, Tim, and Katie came down to Columbus and camped by us and stayed the weekend.



All of them came into the dance circle and danced with us too.



Two Feather’s daughter’s Nikki and Tricia and her husband, Gabe and their son, Evan (Fast Deer), came down for a day. It was nice having three of our eight kids there with us.

That brings us to the end of May. I had full intentions of posting right after Memorial Day weekend, but I didn’t seem to find the time to get online. Then, June was loaded with things. Some good. Some not so good. Some fun. Some not so fun. Some bad. I’ll get to all that in my next post.

In the meantime, please know that I appreciate each and every one of you and I’ll try to do better at updating if I’m not posting as regularly as I used to. No matter what goes on from this point on, I’ll at least post and “I’m still around” comment or have someone do it for me. Love you all!!

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Wednesday, May 21, 2008

Checking In

First, I’d like to thank everyone for the comments, concern, e-mails, and notes sent during the past month or so. I really do appreciate each and every one of you. Mom is fine and I’m doing okay. I didn’t mean to worry anyone. A lot has happened since my post on April 18. I’m gathering all the information and stories and I plan to have a chronological update for you soon after the Memorial Day weekend.
In the meantime, please know that I think of all of you often and I should be back to posting regularly and trying to catch up on your blogs in another few weeks. Love you all!!!!

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Friday, April 18, 2008

Respite: Sort of Like Spring—A Breath of Fresh Air



Sorry to keep you all wondering and worrying. I'm back.

Spring has sprung. The daffodils are blooming and being forced to take a break from care giving was like a slap in the face but turned out to be a breath of the spring’s fresh air.

Mom’s doctor has been telling me for two years to take some respite time. “You’re doing a fine job of caring for your mom, but you need to take care of yourself,” he said. My answer was, “I take her to day care.” Being one of the better-known doctors in the Alzheimer’s and geriatric field in this area and knowing I’ve been living with and caring for Mom for more than three years he said, “That’s not enough. You NEED to take a few weeks every three or four months to recoup your strength and get some needed rest from sleep loss and stress.”

That is “the” one thing every caregiver tells another and we all nod our heads and continue to go on one day at a time, putting off our needs, burning the candle at both ends, and hoping for a better tomorrow.

I, like many of you, took/take much better care of our loved ones than we did/do ourselves. When energy levels became low, we pushed forward knowing that in another one or two hours we might be able to prop our feet up for an hour or so before the next need arises. Probably like many of you, I always take my showers when I hear Mom snoring the loudest. I know then she is in a deep sleep and I can rush through my shower and get dressed before she might awake or I’ll take clean clothes to my house and shower there while she is at day care. Never can I take a shower when she is awake for fear that she will get into something and get hurt or possibly fall. We all know that caring for a loved one with Alzheimer’s is more difficult than caring for a child. An elderly person who has been independent their entire life is much more difficult to handle than a toddler—our loved ones are bigger, stronger, more demanding, and vocal than a toddler. Let’s face it, it’s easier to tell a toddler they shouldn’t do something that may hurt them than it is to tell an 84-year-old they shouldn’t do something they’ve done for longer than we’ve been alive. Switching roles of child to parent is no easy task. We sleep with one eye open for wandering shadows and ears tuned for sounds of breathing. There is no body replenishing sleep for a caregiver and all too often the adrenalin runs out, nutrition is poor, health problems arise and the caregiver dies before the person they are caring for.

When my tests results came back, I wasn’t surprised—at least with most of them. My rheumatoid arthritis is worse and my fibromyalgia is grandstanding the arthritis. No surprise there. Cholesterol levels that my doctor had been amazed were always fit for a twenty year old suddenly changed to worse than Mom’s. Blood pressure that was normally always on the safe low side is now what is considered normal for others, but high for me. My nutrition level is…well…almost nonexistent. I have a ganglion cyst on my wrist and my knee. The quarter of a stomach I was left with 35 years ago after surviving stomach cancer has turned into an ulcer, and I’m anemic. There was something wrong in one of my blood tests, don’t ask me which one because I don’t know, but as a result I’ve been to visit my dear old oncology doctor who took care of me 35 years ago. I was given only six months to live back then. He also treated me three years ago when I had a blood abnormality. That was a few months after I moved in with Mom and the abnormality ended up being a tumor the size of a grapefruit and me having surgery to have it removed along with my ovaries. I drove to the hospital and Mom and Two Feather sat in the waiting room until it was over. After recovery, we waited a few more hours until I wasn’t in a fog and I drove home to continue taking care of Mom.

The good old doc was as shocked to see me then, as I was to see him. He looked as old as dirt when I was 20—funny how he looks exactly the same all these years later. LOL All joking aside though, he’s still testing my blood and trying to figure out what the abnormality is this time.

Needless to say, after all the test results, my doctor told me I needed to take a break from caring. He told me to take a month. I took almost two weeks. Even though I’d talked with Mom about it and finally got her to understand I needed a break and she was okay with it, the day I took her to the assisted living facility she was livid with me. She refused to speak to me, hug me or say goodbye. I knew that was going to happen and I’m glad I’d prepared myself for it.

I admit I was exhausted. I knew that before I set up the respite care. I just didn’t realize how exhausted I was until I woke up some 36 hours after I sprawled across my own bed at my house.

I kept telling myself before I took Mom that I could sleep without having to listen to the monitor, sleep without having to get up every few hours, sleep without having to get up early to take her to day care, sleep without having to watch the clock to make sure I picked her up on time—I could sleep without having to worry about Mom because I knew she was in good hands. My little talk with myself worked like a charm and I woke up feeling refreshed for the first time in three years.

All week I enjoyed the comforts of my own home and enjoyed the company of Two Feather. We’d wondered how different we would act being in the same house 24/7 again after three years of being separated. To be honest, we were concerned that we might not know each other anymore. It was a great relief to know that though we knew it was only for a short time we’d be together we fell right back into the pattern we used to have. It felt odd to go shopping at Wal-Mart after dark. Heck, it felt strange to be anywhere after 5:00 in the evening.

We didn’t do anything special or go on a vacation of any kind because I was too exhausted to drive any long distance. The time we spent together and the relaxation I enjoyed sitting on my couch watching the evening news together and sitting on our deck talking over morning coffee was worth its weight in gold.

We enjoyed a few hours at a Maple Syrup Festival at a local park with my daughter Angel, Tim, and Katie and we went out to dinner with them on another night. It felt strange, but wonderful, to have that freedom to just walk out the door spontaneously and do something—anything different.

I was told not to visit Mom while she was there because it would confuse her, she’d cry and beg me to come home, and it would defeat the purpose of the respite care. I did call to make sure she was doing okay and I talked to her mid-week to let her know I hadn’t abandoned her.

I called my brother to let him know I had placed Mom in an ALF so I could get some respite time. That turned out to be an argument with him thinking I should have consulted him first. When I asked why I should consult him he said, “maybe we could have worked something out. I could bring her up for dinner or take her for a weekend.”

I told him that a few hours for dinner wasn’t going to help me at this point, and neither would a weekend. Then he said he was shocked and I asked why. “Because you said you were never going to put her in a place ‘like that’,” he said. I told him the place was very nice and he shouldn’t be shocked that I’m finally taking a break after three years. He reminded me that all I had to do was ask and he’d try to work something out, so I asked him to take her for a weekend in May, from Thursday evening to Monday morning, because Two Feather was asked to set up his Native American art stand at the popular Nationality Days in our area. He said he’d let me know after he checked with his wife.

Angel visited Mom several times and reassured her I’d be there to pick her up last Sunday. My brother visited her several times as well.

Saturday was a beautiful day but a sad one as well. It was the last full day and night Two Feather and I would spend together and we both had a difficult time holding back our emotions. We agreed that the respite time was good for me and I did get somewhat refreshed and it was good for us to spend quality time together without having to stop what we were doing to take care of Mom. We also agreed that I needed to listen to Mom’s and my doctor and continue to take periodic respite in order to reenergize myself and get a small part of our life back.

After a week, I called my brother to ask if he had talked to his wife about the weekend I’d asked for and he said he could do it Thursday through Saturday, but not Sunday and he asked if he could take Mom to day care on Thursday and Friday. I told him that he was only going to have her Thursday after day care and he could take her to day care if he used his wife’s car, but since he couldn’t do it through Monday morning to forget it. Then he argued with me about the dates of the festival and repeated that he couldn’t do it Sunday. Geesh!!! That turned into another problem. Two Feather said to tell my brother to cancel his plans on Sunday. After all, Two has cancelled his life for the past three years. Well, needless to say that didn’t go over well with my brother and we ended up in another tiff. He said he didn’t ask Two to do anything and I’m the one who chose to take care of Mom. I said, “You’re right. Two does everything Mom’s sons should be doing at Mom’s and he helps me because that’s the kind of man he is, and I chose to take the responsibility of taking caring of Mom so I’d take the responsibility for that weekend too. I told him to forget about the weekend. Then he said he had to talk to a few other people and see if he could do it Sunday and he’d call me Monday or Tuesday. At that point, I said, “I don’t know what your plans are and I don’t care, but if you can’t make a decision about helping with Mom without asking someone else, just forget it!”

Granted my emotions were running high because it was the last day I would spend at home, but I either have a commitment for help or I don’t. I’m not going to change what plans I’d like to make to fit everyone else’s schedule.

When I picked Mom up on Sunday she was happy to see me. She had the biggest smile on her face and held her arms out to give me a hug. She helped me fold and pack her clothes and within 30 minutes we were heading out the door back to her house.

Once we were home, she didn’t recognize her house at all and asked how long she would be staying here. Not that she really knows the house is hers anymore anyway, it was just sad that she asked how long she’d be there. She told me all about the nice ladies she met and what a great time she had. One day they went to the local mall for Senior Day and another day they went to the local high school to see the play Annie. She fit right in once she was there for a few days.

Monday, my brother called me and told me he worked it out so he could keep Mom on Sunday, too. I hate to say it, but that led to the biggest argument we’ve had. We were on the phone for nearly and hour and half dredging up past garbage—me explaining why I feel the way I do about a lot of things and telling him things about my life that he never knew, and him not remembering 80% of the occurrences I spoke of, and not agreeing with the other 20% of what I was talking about. The stress caused by that conversation left me feeling like I needed another week’s respite just to get over it.

Tuesday morning, I called him and called a truce. I told him I wasn’t in the best of health right now and the last thing I need is stress from arguing with him on top of the caregiver stress. The discussion/arguments we’ve had were worth it. I was honest and open about everything whether he believed me or agreed with me or not. We’ve finally agreed that we have nothing in common, except Mom and we don’t get along. All I asked from him was to speak to me decently and quit using a sarcastic and combative attitude toward me about everything. When it comes to me, I know my brother always thinks the worst. I’ll never know why, but it’s nice to know that he was pleasantly surprised that his sister has a better head on her shoulders than he thought. He actually complimented me on the ALF I picked for Mom.

All in all, the respite was wonderful and it may have actually been the straw that broke the camels back with these petty fights he and I have been having. At least I hope so.

As for those who are still in the midst of care giving, please don’t be as stubborn and procrastinating as I was about making arrangements for your loved one to stay in an ALF for a week or two to obtain some respite care for yourself. You’re the only one who can take care of yourself. Respite is like a breath of fresh air! Please don’t just nod your head when someone says to take care of yourself and wait until your health begins to fail before you take that break. If you die before your loved one, who will step into your shoes?

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Sunday, March 23, 2008

Spring! Snow? Happy Easter!

Hello, my friends. Didn’t mean to worry everyone. Just been very busy taking care of a few things around both houses. The last three Fridays we had fish dinners from our local fire hall. Two Feather sat with Mom while I went and picked up the dinners the first two Fridays and on Good Friday Angel and Tim bought dinners for all of us and brought them to the house to eat dinner with us. Good Friday marked the tenth anniversary of my dad's death.

My doctor has put me through a battery of tests and I’m still waiting on the results from those. He’s not happy with my weight loss and it’s time for my annual tests anyway. We’ll see what comes from that. I’m not really worried. Whatever comes, comes. I’ll handle it.

I’ve been up to the nursing home to visit my Uncle Joe twice since I posted last. He had the flu but seems to be doing better now. His dementia is progressing and his lack of concentration was very evident this past week.

Mom’s appetite is getting better and she’s abandoned using her walker. She’s getting around pretty good and her legs seem to be getting stronger as long as the walking distance isn’t more than ten feet. The time change confused her for nearly a week and she’s back to getting up and down during the night. Seems lately her Alzheimer’s is taking a few steps back instead of progressing. That’s a good thing, it’s just you never know from one moment or day to the next which way it’s going. Memories are coming from nowhere at times and conversations are forgotten within minutes or seconds. I hate this disease and its back and forth, ups and downs and plateauing.

Happy Spring and Happy Easter to all who celebrate. Though I’m not sure spring has sprung with 20 degree temperatures here and another inch of snow. :( The sun has melted all the snow finally.

I’ve missed reading what’s going on with everyone. I’ll try to get caught up on my blog reading this week. Hope all are well. Have a great week everyone!

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Tuesday, March 11, 2008

The Rash Is Gone

Not much new here lately. Mom’s rash is gone. The antihistamine and the anti-itch cream must have done the job. It's been gone since Friday. The dermatologist couldn’t fit her in until this week and they said to cancel the appointment if the rash was gone by then. So I guess we’ll never know what it was. I’m just glad it’s gone and the itching is over with.

We're seeing more robins and the woodpeckers are starting their drumming on the trees. The daffodils are poking out of the ground at Mom's house. It's starting to look like spring here. My place sits in the woods and doesn't get much sun, so there's still four inches of snow on the ground and it still looks like winter up there.

Angel, Tim, and Katie visited on Sunday. Other than that, it’s been quiet around here and I don’t have much to say.

Just wanted to let everyone know we’re doing okay here.

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Wednesday, March 05, 2008

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.

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Friday, February 22, 2008

When It Rains, It Pours

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Thursday, February 21

As I said in prior postings, Mom’s doctor took her off trazodone because the increased dosage resulted in her getting one of the side effects of the drug or an allergic reaction—itching. She scratched and scratched until she scratched her skin sore, and in places broke the skin. She had a bout with dermatitis last year, so her doctor recommended I apply lotion a few times a day. I’ve been applying lotion on her entire body everyday ever since, but with this itching, I’ve been applying it more often. The few places she had scratched raw were healing nicely and she had very few spots compared to what she’d had before. The spots were on her forearms, between and just below the clavicle bone, and on the back of her hand, and a few on her cheek.

I told the day care facility more than a week ago that Mom had the itching side effect or allergic reaction from meds.. Symptoms of an allergic reaction include: rash, itching, etc. She started with an itch here and there once in a while and then it stopped until he increased the dosage. The itching came back and a rash started. That’s when her doctor took her off trazodone and put her on seroquel. The seroquel is working wonders for Mom’s sleep and mine, but the itching and slight rash is taking its good old time subsiding.

Thursday I got a call from the day care asking me to pick Mom up. Mom was scratching her hand and the nurse noticed she had a spot / bump / rash on the top of her hand and supposedly on her belly that she suspected might be scabies. I told the nurse (who was standing in for the regular nurse and was aware of Mom’s med reaction) that Mom had been itchy from a reaction to meds and she said I had to pick up Mom and have her tested for scabies. Naturally, I called Mom’s doctor and asked that he fit her into his schedule that day to have her checked. The appointment was scheduled even before I picked up Mom from day care at 11:00 in the morning.

When I arrived at the day care, I said I had an appointment at 3:15 and they were shocked I was able to get her in so quickly. They told me they called the health department and I had to have Mom get a skin test and she wasn’t allowed to return until they had proof of the skin test from the doctor. Then I asked if anyone else was sent home with this same thing, and was told “yes, one other person.” Okay, no problem. I at least knew to tell Mom’s doctor that two people were sent home due to a “rash” and to be extra cautious with a diagnosis.

From my extensive reading over the years, I did know a few things about scabies. Yes, it does show in the form of a rash; it is an infestation of the skin caused by mites; it is contagious; and it is usually spread by personal close skin-to-skin contact between people in child-care facilities, nursing homes, and by sharing the same bed or clothes. I also knew that scabies normally appears in creases of the skin, between fingers, genital areas—none of the areas where Mom’s bumps are—with the exception of the small bump on the back of her hand between the knuckles of her ring and little finger.

I had nearly four hours to waste before Mom’s appointment, so being the conscientious person I am, I took her home, and sat her in the living room. First, I went upstairs and grabbed my magnifying glass and went back downstairs. Mom probably thought I was nuts when I took off her sweatshirt and began examining her forearms with the magnifying glass. I asked her to turn her head this way and that and checked the “bumps” on her cheeks, then got in close and looked at the “spots” on her hand. After inspecting Mom from head to foot, finding nothing that looked like these pesky little mites or tunnel-looking areas on her skin, I figured I’d take precautions anyway and ripped the sheets off her bed, threw them in the washer with the hottest water setting, added detergent and Clorox and disinfected her bed. Then, I went straight to the computer to research this nasty little parasitic monster that might have found its way into my mom’s skin.

The website for the PA Department of Health states that scabies is “pimple-like irritations, burrows or rash of the skin, especially the webbing between the fingers; the skin folds on the wrist, elbow, or knee; the penis, the breast, or shoulder blades.”

Other sources also mention scabies can be found “on the sides of fingers, armpits, inner thighs and around the waist (belt line).”

According to all the websites I checked (nearly a dozen), all the information I read and pictures I found, I felt confident that whatever it is making Mom itchy and causing her to scratch—it is not scabies. None of Mom’s bumps are in any of these areas and none of her rash-like bumps looked anything like the pictures on the websites.

Off to the doctor we went anyway armed with all the information I never really wanted to know about this little parasitic infectious skin irritation.

Mom’s appointment went well. I told her doctor that the day care said they wanted a skin test and she couldn’t return until they received written documentation of the test and he cleared her to return. He looked at the small bumps on her forearms and shook his head “no”. He said, “it’s highly unlikely that she has scabies and it doesn’t form on the face.” He looked at her clavicle area and said it looked like the dermatitis she had last year. Then, he said, “I’m not going to test her for scabies. It takes longer to get the test results than it does to treat it. So I’m just going to treat her for it.”

“So we don’t know if she has it or not?” I asked.

He said, “She’s had this itching and bumps for a while. As close as you are with your mom, if she had scabies, you’d have it by now, too. You’re not showing any signs of itching or rash.”

“No,” I said. “I don’t have a mark on me, and I wasn’t itchy until we started talking about this. I already washed her bedding before I came here.”

He laughed and I did, too.

“You realize scabies doesn’t mean a person or their surroundings are dirty, right?”

I said, “Yes, I know that. It’s just the old-fashioned ideas of scabies bother me, and I’m not real thrilled with having to be treated for something I know I don’t have.”

“Yes, I understand,” he said. “Everyone acts like it’s a big epidemic and gets so alarmed by the word, but it’s really quite a common thing.” Then, he said, “It’s very evident that you take very good care of your mother, Joanne. Knowing you, and seeing the report from the social worker who went to your mom’s house when you wouldn’t place her in rehab several months ago, you wouldn’t need to worry about it anyway. They noted that you kept your mom’s house spotless.”

He added, “If it hadn’t been that you said another person was sent home with a rash, I wouldn’t treat her, but we’ll treat this as if it were scabies just to protect your mom and you. I’ll write a prescription enough for both of you. You treat yourself as well. As long as it’s treated, she’s not contagious and if the day care were open on weekends, she could return by Saturday.”

I reminded him that the day care wouldn’t allow her return without the test. Mom’s doctor is well known in our area for working with nursing home residents. He said, “When there’s one person diagnosed with scabies in our facilities we treat that person and everyone on the floor just as a precaution, including the staff. The day care can’t stop your mom from returning if she’s been treated. A person who has been treated is non-infectious to others on the day after treatment.” He added, “I’ll write a note that she’s been treated and is non-contagious. If that’s not good enough for them, you tell them call me directly.”

He wrote a prescription for Permethrin, enough for two people, and wrote a note on his prescription pad that Mom was treated for scabies, was non-contagious, and he wrote on his prescription note that the day care should alert their clients and suggested they and the day care workers in contact with Mom be treated as well.

He handed me the prescription and said, “If this is scabies, this will stop the itching in a day or so. If the itching doesn’t go away, call me and we’ll get your mom set up with a dermatologist.”

I thanked him for fitting Mom in between patients. I stopped at the day care and gave them the note from the doctor and said Mom would be back on Monday. I was told that the doctor’s note on the prescription might be a problem. They said, “We were told to tell you that she had to have the test, we have to have proof of the test, and she can’t return until then.”

I said, “Mom’s doctor said it takes less time to treat the supposed problem than it does to get the test. By Monday she’ll have been treated and non-contagious. If treatment and his note aren’t sufficient for your nurse, she can call him directly. We’ll see you Monday.”

Mom and I stopped at the pharmacy to pick up the medication and went home to dowse ourselves in Permethrin.

Oh joy! Are we having fun yet?

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Tuesday, February 19, 2008

Hit Me Like A Brick

Today I decided to get off my lazy butt and start cleaning MY house. I’ve not taken very good care of it since I moved in with Mom. Being so tired all the time, I don’t give my house the attention or the thorough cleaning I used to. I manage to swipe a feather duster around the corners of every room and all the shelves and knick-knacks every few weeks and mop the floor once a week, but it’s not the same.

I gave both bathrooms a thorough cleaning—the down-on-my-hands-and-knees-type cleaning like I used to. I scrubbed the walls and took the shower curtain down and cleaned it. The bathrooms looked so nice when I finished that I decided to move into the bedroom and start working on it. I opened every drawer of the dressers and neatly rearranged all the clothes, cleaned the dressers with Murphy’s Oil soap, and gave them a good waxing. I put clean sheets on the bed, ran the sweeper, and started the laundry.

Then, I decided to tackle the bedroom closet. When I moved to Mom’s most of my clothes moved with me, but the floor of my closet was piled with clothes I’ve been hauling back and forth. It was time to get them out of the piles and hang them or put them in drawers. It took me 30 minutes to pull all the clothes out and set them on the bed to go through and decide where I was going to put what. There were things in that closet I knew I’d never wear so I put those items in a box to take to Good Will.

I sat on the floor of my bedroom looking at the room, clean and fresh, and felt strange looking at a bed and cleaning a room I haven’t slept in for three years. That strange feeling turned to sadness as I glanced at all the wall hangings that had once been so neatly dusted and cared for. I turned my attention back to the closet as not to cry and arranged the half dozen pair of shoes on the shelf and pulled out another pile of things I had no idea what they were because I hadn’t been in the closet for so long.

Still in the bag, was an Indian blanket Two and I purchased at his reservation in North Carolina when we were there four years ago. Beneath that was a pillow heat/massager that would have come in handy the past few years had I remembered I had it.

Then, below that was what hit me like a brick! It was a treasure I’ll never forget nor one I’ll ever get rid of. My bed caddy! What’s a bed caddy and what’s so great about it you ask? A bed caddy is what you keep your book, eyeglasses, TV remote, and other essentials close at hand. It tucks easily under a mattress and hangs on the side of the bed. This bed caddy is special. I made it from a pair of my dad’s carpenter jeans.



After Dad died, I made one for Mom, both my sister-in-laws, and me. I’d taken it off my bed just before I moved to Mom’s since I wouldn’t be using it. When I pulled it out from the closet, all those strange feelings I’d had while glancing at the room boiled up inside and spilled from my eyes. I sat, on the floor of my bedroom, hugging my dad’s jeans and cried. The book I was reading when I left to live with Mom was still in the pocket with a bookmark Mom made me still holding the place. The pockets also still held my body lotion, reading light, extra pair of outdated glasses, and that darn TV remote Two Feather hasn’t been able to find for three years. I thought finding the TV remote would bring me to my senses when I chuckled, but the tears continued to flow. I held Dad’s jeans against my chest and ran down the hall to Two’s workroom, tears still streaming down my face.

“What’s wrong? What’s that?” he asked. Between sobs I managed the words, “My dad’s jeans.” The shocked look on Two’s face didn’t help stop the tears and neither did the bear hug he gave me when he realized what I was holding. I buried my face in his chest and sobbed, long and hard, whispering, “I miss you. I miss my dad. I miss my mom. I miss cleaning. I miss everything!”

I wiped the tears from my face, walked back to the bedroom, placed the TV remote on top of the TV, and put the bed caddy back in the closet. Two came in and asked why I didn’t put the caddy back on the bed and I told him I wasn’t putting it back until I could use it again.

He laughed and said, “In that case, you didn’t have to change the sheets on the bed. I haven’t slept in it since you left. I sleep on the couch.”

It was then that I realized how difficult our separation has been for him. In these three years I had no idea that Two didn’t sleep in our bed. All this time I thought he was sleeping comfortable and instead he’s been stretched out on a tiny couch in our living room. He’s always called it the “Joanne couch” because it’s only four foot long.

It’s strange how much our life has changed during this care giving journey and how little things like a bed caddy made from my dad’s carpenter pants can send me to tears. Dad died of Alzheimer’s and will be gone 10 years on the first full day of spring. There isn’t a day goes by that I don’t think of him. Losing a loved one is one of the hardest things to deal with. We caregivers tell each other it gets better, and it does eventually, but there are always those unexpected little things that take our breath away and reduce us to tears. Today, for me, it was my bed caddy and Dad’s jeans. Even after 10 years. Love you, Dad. I miss you.

Mom has been sleeping better with this low dose of Seroquel. Friday, Saturday, and Sunday night she only got up twice to use the bathroom each night. YAY!! I slept pretty well on Friday night, but Saturday night I woke up five times. I think my body and mind had been so used to reacting these past three years that it doesn’t know what to do when it’s not called to duty—so it did what it was used to—woke up. It didn’t take me long to get back to sleep once I realized that there was no need to run to Mom. Sunday morning I did feel the effects of not sleeping sound, though. I felt like I was dragging.

It was a dreary day and Mom was having a difficult time deciding what she wanted to do so I decided to pack her up in the car and go visit my Uncle Joe. I normally visit him twice a month, but with everything that’s been going on lately, I hadn’t been to see him since Christmas. I called him in between, but that’s not the same as a personal visit.

He seems to be doing well at the nursing home. He still says the food is lousy but the nurses are good to him. We visited for a few hours and when Mom used the bathroom Joe said he’d follow us to the elevator when she came out. He looked tired and I guess he had had enough visit for one day.

When Mom and I got home, she wanted to eat and go to bed. I tried to keep her up until 5:30 but she was dozing off at the kitchen table after dinner. By the time I got her dressed for bed she was exhausted and fell right to sleep.

Monday was a nothing day. I did absolutely nothing. Guess I’m entitled to that once in a while. :D

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