Long Time No...?

I know I haven't been very consistent at this lately. Energy and time are the enemy. I have been working late and on weekends being one staff person short. Here at home on the weekends, there have been new flooring projects, mowing, cleaning, etc. that are getting done when I am not at the office.

The news about Mom though, is that there isn't any real news. At least not to us. We see her gradually slip away everyday. Here are a few things that we have observed and experienced lately within the past week or two.

• after David and Sherianne were here, Mom had another seizure and we have been seeing more deterioration
• changing sleep patterns
• coming to the table at 9 p.m. and asking for breakfast
• not getting up until noon
• having more sleep time than awake time throughout the day
• a tomato sandwich is something she has never had
• Stacey staying with her on Thursday while the caregiver went to an appointment and she had never met her before
• up at 1:00 in the morning at the kitchen table - confused and agitated
• told the caregiver the next day that she was afraid to go to sleep because there were some women and kids in her room talking about taking her walker
• agitated yesterday because there were kids running through the house making noise
• asks me everyday when I come home from church if we are going to church
• not changing her poise pad or underwear in DAYS (caregiver and I are going to work on that one in spite of Mom)
• this week she is sleeping under the covers
• communication with her is very simple and direct - long sentences or not talking directly to her are either lost or ignored for lack of grasping it
• Mom met my brother Lou last weekend
• she would eat only ice cream, Nonni's and peanut butter and jelly sandwiches if we let her
• and it isn't always easy to get her to eat anything else

That is a sample of who Mom is today. She still will not get her hair cut and is very proud of the curls that "my grandma gave me", not seeing the bushy, fly away long hair that she really has. I am quite sure that she doesn't know who I am 95% of the time but she knows we belong here and I have a lot of rules and I take her to church. Rules like changing her underwear, not feeding the dog her food, washing her hands after she has used the bathroom and played with the dogs, ice cream and biscotti are not a nutritious meal...

While Lou was here and talking about Ohio, Mom stated once again (almost every day - that she remembers!) that she wanted to go back there. I advised her, as I have before, that she can go back any time she wants, she is not a prisoner here, there are several nice nursing homes there where she would have to live. She came back with "well if they're so nice, why don't you live in them?" So, she is still being held prisoner here in Texas. I don't think it would do any good to pursue that hostage theory and demand a ransom from someone? I didn't think so.

Now just a note about her captors: Joe and Julie are doing great. Julie is such a HUGE help with Mom in support of me. Their lives are only disrupted by the complications in mine, like working late and having a four day headache last week. I thought is was a virus, a side effect of a new medication I was taking, a random blood clot from wrecking my van two weeks earlier (look, it made a lot of sense after hurting for 3 days) or a sinus infection. Finally, on Friday I had Joe drive me to the doctor who diagnosed a migraine. I have never had a migraine in my life! If I had, I would have remembered the axe in my head! A pain shot in her office and I was human again. The hangover lasted a couple days, but this was a reminder to stay healthy. On Tuesday night after I barely drove myself home, I lay on the futon in the patio room and I swear, it made total sense when I prayed, Lord I can't die until someone gets home because there is no one here to take care of Mom.

So there you have it. I hope you feel caught up on our news and can almost imagine being here. Or even wish you were here! Not so much, huh. Oh well! Keep us in your thoughts and prayers. I am off to do all of the mowing, laundry and cleaning before time for church. We get to go to IHOP again! Love you all!!

Guest Blogger Insight

Today I opened an e-mail from David who visited here with Sheriann and whom I invited to guest blog. He was having trouble logging into the site and put his insights about the visit into the e-mail to cut and paste. Which I have done, so appreciatively. Thank-you, David for the visit and the post. I love you.

FROM DAVID:
Been trying to log on and write on the blog but can't get in. So I've decided to share my thoughts here and hope you can transpose it to the blog.

Sheriann and I had the recent pleasure of spending part of our vacation with Mom, Cheryl, Joe and family Having just become caregivers for my 87 year old father we were excited about comparing notes and getting pointers from Cheryl and Joe, who have been caring for Mom for a number of years now in her battle with Alzheimers. What we learned was how blest we are that although Dad's eyesight is very bad and his body is beginning to fail him his mind is still very sharp and he remains alert and witty. Being a regular reader of "The Butterfly Net" I thought I had a pretty good idea of what Cheryl was dealing with day in and day out. But I wasn't prepared for the moment to moment change in Mom's personality. When she was pleasant it was very nice, but that could turn to mean and nasty in a split second.

Cheryl has asked me to share some of the "fun" stories from our visit with Mom. When we arrived I could see a hint of recognition in Mom's eye's but it was also obvious she had no idea who I was. After giving her a big hug she said, "I remember you, we were classmates." Then, as I put my hand on Sheriann's shoulder to introduce her to Mom, she said "She's way too young for you, you shouldn't be hugging her."At that point I didn't know what to say but she had instantly won Sheriann over. Sheri then got the grand tour of Mom's room as I visited with Joe. Mom showed her the butterflies and various "secret" papers she had stashed throughout the room. As well as all of her craft items. She rummaged through her drawers on several occasions whispering, " I have to hide things because THEY are taking my stuff." We could tell that Mom really liked visiting with us and especially liked the attention she was getting. She would touch my arm or rub my back every time we passed and I knew she felt a connection with me and was struggling to remember what it was. It was at these times that I realized how awful Alzheimer's is, not just for Mom , but for all of us that love and miss her!

Cheryl and Julie came home from work and we made plans to go to dinner with Stacey and her family. It was at this time I saw how quickly Mom's personality could change. When we arrived at the restaurant, Stacey, David and the kids were already seated at the table. When she saw them seated there she turned and tried to sit at a different table. She became sullen and very difficult to deal with throughout dinner. Casting many a glare at Levi and Micah all evening long. I had heard how mean she could treat Stacey and her family but really wasn't prepared to see it firsthand. I was both shocked and saddened! Also, knowing how much this must hurt them, I was impressed with how well the kids handle Mom's bitterness.. Stacey and David have done a wonderful job dealing with the situation and are a great source of strength and support for Cheryl and Joe. Love ya Stace!

Another observation we made is how if you don't really know Mom's background and are conversing with her you might think she is perfectly normal. Sheriann had this experience. Her and Mom sat at the dining room table talking for quite a while. After Mom went into her room to rest Sheri came out and asked Cheryl how long Mom had taught school. Mom had told her a long tale of her many years teaching high school and all the kids she had had in her classrooms back in Ohio. Sheri was amazed at how much Mom remembered until Cheryl told her Mom had never been a teacher.

In the short amount of time we were there we saw Mom's mood swing many times. She even became a little confused and agitated at IHOP after Church Saturday evening (the highlight of our trip!). But the one thing I noticed was that she never became cross or mean to Julie. Julie is so patient and helpful to Mom. Never getting frustrated or short. Always there to get things for Grandma when she asks. What a source of Pride and Joy for Cheryl and Joe! Love you too, Julie! Gonna send you some snow this winter!

Can't end without telling about Becky (Mom's Energizer Bunny caregiver during the week). She bounces around getting things done for Cheryl and taking care of Mom with a smile on her face and a song in her heart. Even though Mom says, "I don't know why she's aways around. I don't like her." and, "That mean woman tried to drag me out of the car at the nursing home." This was the incident when Mom couldn't find her crafts to pass out at the home and refused to go in. Once again claiming , "Somebody took them from my room."

We had a great time visiting and spending time with Mom. Brought back many crafts and gifts which Mom insisted we take. Passed the crafts out to the people in my sisters hi-rise apartment building. All the time knowing that "someone" is being accused of stealing them. Many more stories I could share with you but realized I've turned this into a book already and need to cut it short.

In closing I would like to say "Thank you Cheryl and Joe for sharing your blessings with us and still accepting me as part of your family." The world may idolize a whack-O like Michael Jackson, but in my mind it's people like you that are the real "Superstars".

Much LOVE and many PRAYERS,
David

Moments of Joy in the Jumble

You guessed it - another Saturday night. We have been to church and IHOP. It has been a very busy couple of weeks around our house and there has not been time to sit down here to note some things. David and Sherriann were here visiting and there a couple of humorous stories to tell about that. I have asked David to be a guest blogger to give you his perspective on their visit in regards to Mom. Hopefully we will hear from him.

Other than that, there has been pretty much the usual chaos with all of us and others, coming and going - floors still being done, new caregiver, working late, taking days off in the middle of the week to go sightseeing, taking dog to the vet - a lot of things that disrupt whatever continuity we are sometimes able to achieve. For the most part, it would appear that Mom has been unaffected by it. I can say that maybe we are just seeing more of the same, but "more" of it. Her sleep patterns are different and she continues to find ways to assert her independence and right/need to control and choose. Mom continues to choose to sleep on top of the covers in spite of fresh clean sheets with lily of the valley print. She continues to hide things in her room and if fact, most of the stuff that have been on shelves in her closet are now put away elsewhere. She has filled her dresser drawers with everything and goes on and on about people going into her room and taking her stuff. In reality, she does not remember that she hid it or where she hid it.

Mom's day to day ability to communicate has drastically decreased. She tries to be involved sometimes and contribute to dialogue but her contribution is almost always disconnected from what is going on. It is more likely, like at dinner or at home, that she is silent and looks around the table as though she is eating with strangers. Tonight at church, Mom greeted a lady sitting near where we sit and spoke loudly to her and insisted on hugging her. I worked at redirecting her and getting her to our pew, saying "shhh" with my finger to my lips. She turned, still being friendly and loud, put her finger to her lips and said she did not want to "shhh". We finally got her settled in but at the beginning of mass during the greeting, she did pretty much the same thing with everyone around her. Going to church is the highlight of her week and she asks every day when I get home, if we are going to church.

Mom has a terrible wheeeez. She refuses the medication and she refuses to give some good coughs and get the gunk out. I will take her to the doctor next week for a regular 3 month followup and I know that the doctor is going to tell her the same thing we do - cough! The wheeez is rather dramatized at times - attention seeking. The congestion is not in her lungs as much as it is just in her throat and vocal chords so that she can speak with a raspy voice. And she does, of course, whenever she thinks it will get attention. Mom loves attention. If it isn't about her it is not worth being part of and she goes to bed.

Becky, our new Energizer Bunny caregiver took Mom to the nursing home to distribute her crafts. Mom loved it and I understand that they loved her. She had an appointment to go back at 2:00 the following day because someone there had something to give to her. In the meantime, mom came home and put her bag of crafts away. The next day when Becky tried to get her out to go back to the nursing home, mom could not find her bag and was certain that "someone" had been in her room and taken it. Somehow, Becky got her into the car anyway and they drove to the nursing home. Mom absolutely refused to get out of the car! Urging, begging, bargaining and promise of ice cream fell flat. Later, she had stories about how Becky tried to drag her from the car. Becky's laughing response when I told her was that she hadn't had her but whooped in a long time and she sure didn't need to get it whooped by a little old lady by trying to drag her out of a car!

We are so blessed, aren't we? With so much lost there are so many other things to rejoice over - like Mom saying the Lord's Prayer from start to finish in church tonight! And her odd but so very important phone conversations with Deena each week as I listen in on speaker phone! Thank you all for your love and support!