The Rest of the Story - or at least some of it...

Hey, I'll bet you think you haven't heard from me in more than a week because, as I remember, I had a plan and things should be rockin' along. WRONG!! I have so much to tell you. So get comfortable and allow yourself some extra time to get through this with me. You know that this Blog is as much for me as it is for you! So here it is.

I did sleep well on Tuesday night and got to Tanglewood by 10:30 to give me time to make sure Mom was clean and presentable. She was not either when I got there. Mom had been wearing the same t-shirt with a big butterfly on it 24 hours a day for at least a week. When I suggested that she change it, she let me know in no uncertain terms that she was not going to take it off. Mom smelled like a dirty diaper so I let her know that she had to change her underwear, pad and slacks. That was not going to happen either! After some time spent trying to cajole her into complying, I got physical and snatched those elastic waste brown slacks down around her ankles. The panties and NASTY pad were next. Mom swung at me and called me several names but I managed to pry this clothing from under her feet which she tried her best to glue to the ground.

Okay, she is in mostly clean clothes. We have a little time to spare so I try to visit with her, distract her, get her into a good mood.

12:00, time to get to the car so that we can stop for a quick lunch before going into Dr. Birdwell's office. The next hour and a half was spent, no kidding!, trying to get Mom to get into my car. She has absolutely no capacity for reasoning and just could not fathom why she needed to go although I tried "let's have lunch, lets have ice cream, you have been saying you wanted to leave and now is your chance, you are sick and need to go to the doctor." I mean! We went around and then around again. She was adamant about going back into the building to her room. Long after we were going to be late to the doctor appointment, Mom let go of her walker and let me put it in the car and she reluctantly climbed into the front seat with the promise that we would be gone only a few minutes and I would bring her right back.

One block from Tanglewood, Mom was having such anxiety that I agreed that it was time to go back. When I was there earlier, I knew that the Physician's Assistant was on site seeing some of the residents. As I turned around to head back, I called Tanglewood to be sure that he was still there and insisted on seeing him when I arrived.

Back at TW, Mom was escorted to her room and I sat with the doctor, the Director and the Alzheimer's Unit manager and let them know that her care in the past month was totally unacceptable. At that time, I was shown a zip loc bag with at least 50 pills in it that Mom had refused to take. I was at that facility daily and asked about her. In the first week she was there, I was advised one day that she had refused to take her meds and I was able to get her to take them. That was the last I heard of it. Mom's behavior had become increasingly defiant and physical if anyone came near her and she felt threatened. She told me that her tummy did not feel well and on a number of occasions, I was told that she had vomited. Does this sound like someone who is coming off of some high powered anti-depressant, anti-anxiety and anti-psychotic drugs to you? Well it did to me too! The P.A. felt strongly that Mom had a UTI and that was the reason for this changed behavior. He wanted to prescribe an anti-biotic. Why? So it could end up in that little baggy with the rest of her pills? Duh!! Nonetheless, he ordered home health for Mom and a nurse was scheduled to see Mom later in the day to get a urine sample. I insisted if she had a UTI, she did not have it when she got there, because I made sure she was clean! I was a mess by this time! The unit manager agreed to take on Mom's care herself AND to communicate with me throughout the day about Mom's status. This was on Wednesday, March 17.

On Thursday, I picked Julie up from work at 4:30 and we went to TW. Mom was sitting in a chair outside her room clutching her purse. Staff came up and explained that Mom had lost one of the lenses out of her glasses and they did not know where it was. I finally go Mom to let me see her glasses and discovered they weren't even her glasses!
I still don't know where hers are. Staff reported that Mom had been difficult all day, refusing to eat, participate or change her clothes. When I inquired about the results of the urine test, I was informed that the nurse had come but that Mom slapped, kicked, grabbed and called her names and would not cooperate. Julie and I stayed only a short while because Mom was in a different world and was only connecting in order to be ugly and angry.

Before I left the parking lot that day, I phoned the Physician's Assistant and insisted that Mom be hospitalized before she hurt herself or others and to be treated for a UTI if there was one. He said he would speak to Dr. Le and within the hour, Dr. Le phoned to say that if we could get Mom there, he had arranged a room for her at the hospital. We discussed how to get her there and the "what ifs" and agreed to give it a try. I phoned TW and asked them to use the gel (part Ativan and part Haldol) on her wrists to subdue her and Joe and I left to try to pick her up.

By the time we got there, Mom was calm and agreeable and staff had walked her to the front door. We arrived at the hospital and although Mom had already been accepted there, I had to sign forms and answer questions. All of which takes time as it is ticking away and the gel could wear off at any time.

The sedation did finally wear off - just as we got to her room and tried to get her out of the wheel chair and into the bed! This was maybe about 8:00. At 11:00, Mom was still in the wheel chair and was carrying on what she thought was a conversation with me. At my suggestion, Joe arranged for Stacey to come pick him up so that he could go to work the next day and he could leave me a car. Before he left, I took Mom to the bathroom and Joe removed the wheel chair, forcing Mom to sit on the edge of the bed. Around that time, I was able to get her to take a pill - an Ativan. At 2:00 in the morning, Mom was still "chatting" with me when she closed her eyes, stopped talking a fell asleep straight up in the bed. I quickly laid her over and covered her up. At 2:30 I was headed home for two hours sleep and a few items like a toothbrush, a book to read, etc. I got back to the hospital before Mom woke up and before shift change at 6:00.

And tomorrow, (or the next day) you will get more of the story. I told you it was a whopper! I will leave you with this though: tonight Mom is resting comfortably and is doing better than she has in more than a month. I on the other hand...am taking donations for my mental health cruise to Mexico!

Buenos Noches!!

A Little Bit More

A plan is in place. Mom has a doctor appointment with Dr. Birdwell tomorrow at 1:30. We moved the other twin bed and vanity to the Meyer's last night. I will go to Tanglewood before lunch to make sure she is clean and dressed. I am prepared to do her nails before we go, take her to lunch and to Wal-mart or the dollar store before taking her to the new place. I have Nonnies to take over there and her baby doll is already there. I will be speaking to the doctor about her medications. It has been 4 months since Mom was in to have them renewed and she has deteriorated significantly in that time. She is more anxious and paranoid, depressed and angry. How that all goes together, I am not sure. But hopefully we will get the answers that will help Mom be not so anxious and oppositional.

I am off to bed - with a little bit of xanex and God's Grace to relax and be ready for tomorrow.

Thank-you for your support and prayer.

More of the Story!

I have been waiting to update this story until I figured everything out. Like that is going to ever happen! So, here I am with the latest details as vague and unsettled as they are.

Mom has been at Tanglewood for almost one month and has not adjusted. The whole truth is, that she is not going to adjust to anything or anywhere. We know that and everyday when we visit and leave without her, we are reminded again. During the month she has been there, she has refused to shower, take her medications and eat at various times. She has grabbed a staff by the shoulders and pushed her away when she thought that the staff was taking things out of the closet. Mom has peeled her name and the name of her roommate off of the plaque by the door. She has been angry and pounded on the tables. All the while of course, flirting with the mindless old men there! Mom lets us know that she "has problems" and she is leaving there. She has packed the two tote bags and the basket of her walker with as much as they would hold and plans to leave the locked unit. Keep in mind that none of her language or actions make any sense at all and every day is a little different.

So, I am planning to move her. Yep. In as much as Mom is not adjusting, I am doing worse. Tanglewood is really a good facility. It is not a nursing home but an assisted living facility, even the locked Alzheimer's unit. The reason I am moving her is that I need more. I need more interaction with staff and with doctors. I want to know if she had a shower or if she is getting her medication and if she is sleeping at night, having nightmares and eating nutritiously. Currently I am not getting this information. As an "assisted living" place they don't have a system of communication that meets my need for involvement in her well-being.

Last week, I discovered, through some networking, that there is a private care home right here in Crowley about 3 miles from our house - in town on the opposite corner from the high school! It is owned by a family who, as it turns out, we sat among during football season while our kids marched in the high school band. Anyway, they dedicated 3 bedrooms to the care of Alzheimer's patients after they remodeled their home for the care of their own family member several years ago and are now a licensed facility. They have two empty rooms at this time and are willing to take Mom. We are arranging the move for this week I think if everything works out. At this place, Mom will be able to have her peanut butter and jelly sandwich every morning, her coffee and Nonni's for snack and ice cream if she wants it. I don't know if it will make a difference in her but it will ease my mind. I anticipate a doctor appointment with her this week to discuss medications too. Mom has changed a lot and I think her medication need to be adjusted to ease her increasing anxiety and aggression.

You know I will keep you posted!

On another note, though, Stacey, David and the kids have been here more frequently and it has been so very peaceful and enjoyable for everyone. I can't express the calm and peace in our home again. I am sleeping through the night. I am not taking Xanex. I did not question that Mom was always supposed to be with us in our home. And I don't question now that it is time for her to be cared for by others so that my family is no longer torn apart by Mom's verbal abuse, anger and increasing needs.

That's as up-to-date and real as it gets for today. I think it will be a busy week and I will have more to report next week at this time. Stay tuned! We love you!

The Journey Continues

Well, it's time to do this. I have had it going around in my thoughts for over a week but really did not have the time to sit here and do justice to the information. I'll give it a try tonight.

Bonnie and Deena left on Wednesday, Feb. 24 after a great week together. Yes, the visit was interesting, enlightening, endearing, affirming and productive in many ways. They were able to meet the woman our mother is today. They heard the joyful and made-up stories - several times. They went to church with us and to I-HOP. They were awakened many times during the nights by Mom being up and dressed. When they couldn't find something, like a tube of lotion that Deena had just bought at Target, guess where we found it? Yep, they pretty much got the whole experience except perhaps the bouts of anger and agitation that come out of nowhere.

In order to take you on this journey with us, I'll have to go back a week or two.

You all know that I have been contemplating again, how I will know if and when we would need to move Mom to a place where she would be safe and healthy and that I have been in prayer about this for sometime. So, while Deena and Bonnie were here, I took them to the memory care place that Joe and I had toured in October. After meeting with staff there, we took the initial steps to begin moving Mom there. Medical records were requested from her doctor and an in-home assessment was scheduled for Feb. 19. The person who was to do the assessment did not show. I thought perhaps we had mis-communicated about the time but I was unable to reach her at her office or on her cell phone.

My prayer has been "Lord, I want to do your will, but how will I know what that is?" So, I was leaving it up to the Lord to lead me in this decision. And it appeared that the door to that memory care unit was opening. Okay, we were still rocking along like normal; Becky was here everyday and things were pretty "normal."

On Friday, Feb. 26, Becky came as usual. Mom got up before I left for work so I initiated getting her dressed and asked her to put on fresh panties and pad. She did it but was not happy. I left her dressing while I continued to get ready for work. Mom dressed and came to the kitchen table while I was talking to Becky and getting everything together for the day. Mom announced that she could not live here anymore! That turned the conversation a little. Knowing that I had already taken steps toward this, I agreed that she was probably right and that I would work on making some arrangements for that. At that point, I dug through my purse and found the card of the person who did not show up for the assessment and was determined to call her when I got to work - taking matters into my own hands, essentially. I found the card and slipped it into my pocket and started out again.

Before I could get to the door, Mom had an indescribable moment of clarity and announced that she wanted to move to Tanglewood!

Becky and I were speechless! Goosebumps! Awe! One moment I am taking matters into my own hands because God is not moving on this and the next, the answer to my prayer comes out of Mom's mouth. Becky explains it saying that not only did He answer my prayer, He sat at the table with us that morning and delivered the message!

I left for work finally and called Tanglewood on my way there. The details of the day are foggy but throughout conversations with administrators there, the obstacles such as TB tests and doctor orders, just fell away. By 12:00 that afternoon, I called Becky to say that Mom should pack a bag. And here the story turns a little! When Mom heard that she was to pack a bag for Tanglewood, she became very agitated and angry and Becky called me to come home. Mom denied EVER saying that she wanted to go there, she hated the place and a lot of other stuff, including that she WAS NOT going to go!

There was absolutely no doubt in my mind that this had to happen and to hesitate on my part would be lack of faith, doubt and even disobedience. I moved through it, packed her bag, found out that Joe could get off at 2:00, and by 3:00 Becky, Joe and I were in the car with Mom as she held and cuddled her baby, en route to Tanglewood, the whole time, ignoring Mom as she insisted she was not going to stay there.

And that is where Mom is today. She still does not want to be there. We moved her bed, dresser and rocking chair there. I take more things to her everyday when I visit.

I see how unhappy Mom is almost every day - she tells me she wants to be dead rather than live there. But it is unbelievable how she fits in there! Today, Mom was resting on her bed refusing to go to lunch and wearing her blue jacket that has her name on the front and "Outdoor Army Store" on the back. She was quick to tell me that she was wearing it because a boy had stolen it and she got it back from him! I got her to take the jacket off at one point and what did I find in the pocket, but a metal belt that did not belong to her! I finally got her to the lunchroom and saw that she was wearing a wristwatch - NOT HERS! One of the guys there, stopped me to ask if I had tried the pool yet? I told him no, that I had not. THERE IS NO POOL THERE.

Of course, leaving her there when I know how unhappy she is, is very hard but I am still at peace with the decision. I do weigh it now against what I come home to: a peaceful home with my children and grandchildren around me. Stacey, David and the kids have been here more and have not been subjected to the verbal abuse or the chance that Grandma will trip them or try to scratch them as they walk by. And I have slept so well every night. Haven't taken a Xanex all week.

This chapter is long, I know. I wanted to share the details with you. You have supported us in prayer, cards, phone calls and visits. I don't know where we go from here but I will be exploring it in the coming chapters of this blog I suppose.