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?

First Day of 2008

The first day of 2008 started off with new thoughts and new goals. After midnight, I pulled out my new journal and wrote in it for the first day of the New Year. I began my journal by attaching Keith’s list of reflective questions inside the front cover and wrote my heartfelt answers to those questions. I even made a list of simple, yet manageable goals for the year. I’ll talk about those later, but one goal is to write in my journal every night before I go to sleep. Thank you, Betsy. I’m taking your writing challenge. Lights were out and I was asleep by 1:00.

Two is an early riser, but I was surprised when he woke up at 4:30 and told me he was going home. I walked him downstairs and went back to bed. I didn’t get up until 9:00. He came back down and sat with me to enjoy our morning coffee as we always do. He looked unusually tired and when I asked him about it, he said, “No wonder you’re always so tired. I know Mother gets up during the night, but she didn’t last night. Even when she doesn’t get up, you can’t possibly get any sleep with the way she snores.” I burst out laughing and so did he. He’s right. Whether Mom gets up during the night or not, I don’t get much sleep with her constant snoring. Funny though, last night, I didn’t hear a thing—not her snoring, not his snoring, nothing—I slept fine. I felt so comfortable with him there; I slept sound for the first time in a long time.

He left to go back home and I got Mom up to get her day started. I got her breakfast ready and we sat and talked while she ate. Then I convinced her to get into the shower without too much of a problem. We didn’t finish with all the bathroom detail until just before noon.

Mom sat at the kitchen table and peeled potatoes while I put the traditional pork and sauerkraut and kielbasa in a roasting pan to make for dinner. Once everything was in the oven, she sat in her chair in the living room and colored for the afternoon, while I sat in my chair and tried to finish writing a book review that’s been far too long in finishing.

I called Two around 4:00 and he came down to eat dinner with us. The conversation at dinner was quite different. For a moment, we thought Mom was fairly lucid when she asked, “Have my sons called?” “No, Mom. No one has called today.” “When do I go back to club?” “Tomorrow Mom. You had today off because of the holiday.” Then she looked at Two and said, “I’m glad you’re here for dinner.” It’s so difficult at times to know if Mom knows Two or not. She’s so good at talking to people and sounding like she’s a best friend with them. It wasn’t long before I realized she didn’t even know me. Or at least I think she didn’t. When she said, “You two are my best friends,” I sort of got the idea that at that moment, Two and I were, in her mind, just friends of hers. Then again, she may have been sincere about her statement. She’s always said I’m her best friend. I didn’t interject that I was her daughter, being her best friend has always been fine with me.

After dinner, Two sat and talked for a while and then went back to our house. It was time to get Mom washed and dressed for bed and she was sound asleep by 5:30.

Just now as I was ready to close this writing, I heard her get out of bed. She woke up at 9:00 after a dream and yelled up the steps. I started walking down the steps to see what was bothering her and she asked me if Mr. N. was upstairs. I told her no and directed her back to bed. On the days she isn’t at day care she asks all day when she goes back. Evidently, she misses being with her friends there. Glad I slept sound last night. I think tonight will be a long night again since Mr. N. is on her mind. Goodnight everyone. I’m going to catch my z’s in between Mr. N.’s visits. LOL

Little Things Matter The Most

Friday came and went too quickly. I took Mom to adult day care and went straight to my house to visit with Two Feather. We went to the post office to mail the bills I’d worked on the evening before and then we went to the store to pick up a few groceries. While we were at Wal-Mart we bought a few new releases to add to our collection of movies that we watch during the cold winter months.

When we got home, Two Feather was full of surprises. He built a fire in the fireplace and told me to lie on the couch and relax. I guess he could tell Mom and I had a long night. Without telling him, Two Feather always seems to know whether I was up most of the night or whether I was able to get some rest. He always encourages me to rest when I’m home even though that is our only time together.

Watching the flames surround the logs in the fireplace was hypnotizing. The heat from the fire warmed the living room and my heart knowing that Two Feather does whatever he can to make me comfortable when I get the chance to relax in our house. He knows that it doesn’t take much to make me happy, and it’s the little things that mean so much to me and matter the most.

I dozed off watching the fire and before I knew it Two Feather was waking me up at 1:00. He stood above me smiling and asked if I felt like eating. When I said, “Yes,” he said, “Good, sit there. I’ll be back in a minute.”

It took him less than a minute to bring a tray into the living and set it front of me. He’d made buffalo tenderloin and fried potatoes while I was sleeping and had already slipped one of the movies into the DVD player for us to watch while we ate our lunch together.

Two Feather cooks his own dinner every evening since I’m not there to do it. He seldom comes to Mom’s to eat because he doesn’t want her to feel uncomfortable. Our meals together are far and few between.

The meal he made was wonderful for a lot of reasons. Buffalo is excellent if cooked properly, and Two Feather knows exactly how to cook it. The meal was also wonderful because I didn’t have to cook it. Here someone whom I should be cooking for was catering to me. What more could I ask?

We watched the movie Fracture while we ate. I’ve always loved Anthony Hopkins. He’s such an excellent actor. From Silence of the Lambs to Hannibal, the deep psychological parts he plays never cease to show what an amazing actor he can be. Fracture was no different and his part delved into the deep recesses of the mind once more.

When the movie was over, Two Feather and I talked for a bit and it was time for me to leave to pick up Mom.

Friday was a joy. It was one of the best days I’ve spent at home in a very long time--even if it was for only a little while. But…it’s the little things that matter the most.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

When she fell asleep, so did I.

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

Adult Day Care Picnic and a Weekend of Respite Care

Friday, August 24, 2007

Today was family picnic day at the Adult Day Care facility where I take Mom to gain a little respite care. Caregivers were invited to share the day with the family member and experience a typical day for the patient. I attended last year and pretty much know what her days are like, but since I was going to be away for the weekend I thought it would be a good idea to spend the day with her on this special day.

Clients who attend the Day Care start their day with a bit of exercise (most from the chairs they’re sitting in), which includes arm and leg movements to music. After the fifteen minutes of musical exercise, they move to neatly set tables for breakfast. Freddie the musician normally comes every Wednesday to play oldies (the 30s to 60s) and the clients who feel like kicking up their heels get on the dance floor. Mom never misses a chance to dance. That was one thing she and Dad did every Friday night when I was a youngster. Last year the musician played one of my mom and dad’s favorite songs, “I’ll Be Seeing You” and naturally, being the emotional and sentimental fool I am, I had to step outside while the tears flowed down my face.

That song just tears me apart every time I hear it because Mom and Dad danced to it at the Friday night fire hall dance and fish fry every week. Dad would dance with Mom and I would wrap my arms around both their necks and be strolled around the dance floor with them as I sat on his elbow. I was small, but he was strong as a bull.

This year, I expected and prepared myself for the song. I took pictures of Mom dancing to that lovely song, but due to the privacy of other clients, I’ll not post them. Let’s just say she didn’t kick up her heals like she used to do with Dad, but seeing her shuffle her feet to one of her favorite songs (and mine) was enough to reduce me to tears again this year.

I'll Be Seeing You

I'll be seeing you in all the old familiar places
That this heart of mine embraces all day through
In that small cafe, the park across the way
The children's carousel, the chestnut trees, the wishing well.

I'll be seeing you in every lovely summer's day
In everything that's light and gay
I'll always think of you that way
I'll find you in the morning sun
And when the night is new
I'll be looking at the moon
But I'll be seeing you.

The singing and dancing lasted about an hour and, as Freddie packed up, everyone placed themselves at a table for lunch. Fruit salad, hamburgers and hot dogs, baked beans, and macaroni salad was served. After lunch a magician came and performed, and then there was bingo and a drawing for the door prize.

The affair ended at 3:30 and we were on our way home. After spending the entire day at the Day Care with Mom, we came home and finished off her day in the usual manner: making dinner, getting ready for bed, and talking at the kitchen table until her normal bedtime. Over the past year her bedtime has become earlier and earlier as she tires out quicker from her long days. Fifteen months ago she was staying up until 7:00 PM, a year ago it shortened to 6:00 PM, and just in the last six months she’s been getting exhausted around 4:00 PM and going to bed by 5:00 PM.

Mom was exhausted when we reached home today.

I tucked Mom in bed around 5:15 PM and went upstairs to my room to wait for my daughter, Angel, to drive in from Mechanicsburg. She made the four-hour drive to stay with Mom this weekend so Two Feather and I could spend the weekend together.

Angel arrived a little after 10:00 PM. I stood on Mom’s porch with her dog so he wouldn’t bark and wake Mom, but Mom knew Angel was coming and dozed and woke every hour until she knew Angel arrived safely. (Even Alzheimer's sometimes doesn't change the way one cares or worries about the safety of others.) Once Angel was in the house Mom fell asleep and we could hear her soft even breathing from the baby monitor in my room as I explained the weekend directions to Angel.

By 11:00 PM I was sitting on my couch at my house just a stone’s throw through the woods from Mom’s house.

It felt eerie driving at night. I can’t remember the last time I’ve been out in a car after dark. It felt strange being in my own home that late at night, too. Everything felt strange, but it felt wonderful at the same time.