Some Prologue

Julie came running in the back door earlier today yelling "it's gramma, it's gramma!" Joe and I meet her in the living room where she has a Monarch butterfly sittin on her hand opening and closing its wings.

There is a Light at the End of the Tunnel

Yes, there is! Mom passed peacefully at 6:42 this evening listening to Alan Jackson sing her favorite hymns. As things quickly deteriorated today, Mom sang (without words) and sang and when the pain got worse she sang louder. About 3:00 this afternoon, Mom quit yelling at everyone and barely responded when she was touched or moved. The afternoon was filled with frantic tests, scans and x-rays to determine the cause of her decline. At about 6:15 following a scan, the infectious disease specialist they called in confirmed that Mom had very serious colitis and that the anti-biotics she had been on had killed even the good bacteria, making her susceptible to this. At that point, Mom began showing signs that she was leaving. Joe and I were bedside as were about 3 nurses and the doctor.

Joe and I had the honor of sharing those moments with her. Her journey has ended. She spared us difficult decisions about her continued care there at the hospital and about the care we anticipated she would need when she left the hospital. Mom has been ready to go for a long time and has told us so on numerous occasions.

I don't have words to thank you for your prayer and support these last few years. Thank you for sharing the ups and downs with us. Thank you for the encouragement and love!

We are making plans to celebrate her life this coming week at St. Joseph Mission in Ashtabula. Please continue to pray for us as we move through this. There will be memories, laughter and tears when we all get together to "sing and shout the Jubilee!"

Mom has found the LIGHT at the end of the tunnell!

Update

Stacey here. Since my mom posted her update this morning, Gramma's condition has deteriorated even more. They've moved her to the ICU and are suspecting possible renal failure. That's all the information I have at the moment. Please pray.

(((Love you)))

BUT WAIT!!!! There's More!

So, we meet again...for more of Marjorie's journey through this dark tunnel of Alzheimer's. I hope you are still praying for and supporting research to find a cure, a preventive or life changing treatment.

I come to you today from Mom's hospital bedside where we have been since Tuesday, April 6 after I received a phone call from Garden Terrace saying that Mom had fallen and most likely broken her arm. As it turns out, she did indeed break her right elbow but, as far as we can tell, there was no other damage. The elbow is cast and after some discussion with the doctor, I have decided that the further trauma of surgery would not benefit Mom. When this heals she will have fairly good range of motion and should be physically able to do much of what she was able to do prior to this.

The actual truth of the matter is this. Mom has deteriorated so much, I do not, at this moment, anticipate that we will have much of the Butterfly left.

(aside: Fr. Phillip was just here to pray with me and to give Mom the Sacrament of Anointing - formerly called Last Rites. It was beautiful.)

Let me give you a picture of what I am looking at. No, not an actually picture, that would scare you I think, but I will try to describe where we are on the journey today.

Mom was on the observation unit until 11:00 on Thursday night. They moved her at that time to a private room on the 5th floor because she was disturbing the other patients there. Initially, Mom was somewhat coherent. Enough to refuse food, water and meds. But also coherent enough to respond to me and I was able to get her to take some water, a few pills and some jello. Mom's reputation precedes her from shift to shift and unit to unit. Throughout the day I remind her that she is in the hospital because she fell and broke her arm. Whether it is the Alzheimer's or the morphine, Mom's only communication is screaming, yelling and physical resistance. If she hears a noise, she yells. If someone touches her forehead or arm or checks her bracelet for her name, she yells. If someone in scrubs comes in, she yells. The tough part is determining what part of the yelling is pain and what part is "Go to hell," which she is unable to articulate at this time.

I have a compact CD player tucked under her pillow with head phones resting on the pillow next to her. I keep it playing her Alan Jackson CD of Gospel Music. Yesterday and today when she was not agitated or complaining, Mom even hummed the songs with me as we listened to the music. I have not been able to get her to take any food or drink yet today and Mom has barely opened her eyes. About the only way to know if Mom is in pain is to let the morphine wear off and measure her yelling against her rise in blood pressure and pulse. That was not working for me. My instructions so far have been that she is to be kept comfortable. When Mom wakes up crying in pain, they have waited too long to give her the pain killer.

I am rethinking that today as I would hope that the pain is receding and I would like her to be awake enough to take food and maybe respond more with words rather than behavior. The risk there is that since Mom has not had her Alzheimer's medication again and when she is not sedated she will be trying to leave, pulling out anything that is attached to her and cracking someone over the head with her casted arm! And then someone rushes in with a dose of Atavan because she is a danger to herself and others.

Mom has bought herself more time here in the hospital by running a fever and having a yet unidentified infection. The broken arm will require rehab, so her 20 or 100 days starts over maybe? The expectation is that Mom will be released from the hospital on Monday. I spent yesterday speaking to and meeting with staff from local Alzheimer Rehab and nursing homes. This past weekend, before the fall, I was "this" close to just bringing her back home, hiring Becky again and moving into the other twin bed in her room. The doctors, my family and friends have dictated that this is not an option.

As I sit here next to her bed I can envision the Butterfly that trotted around without her walker, ate Peanut Butter and Jelly sandwiches every morning and more if she could get away with it, dunked her Nonnies in coffee and loved going to church. But I honestly don't see that in our future. This is a left turn on the map and I just don't know what part of her besides the angry, controlling and stubborn part will be left. Now, don't you tell me that you didn't know that side of her!

I guess that's all I have for today. You know I could go on. And on. But if I did, you might be disillusioned about me as well! So let's leave it as it is. The devoted daughter by her mother's bedside who deserves a CRUISE someday!

I love you all and do so much appreciate your thoughts and prayers - and God's Grace! You hold us up!!

Where Did I Leave Off?

Mom and I spent Thursday night, Friday, Saturday, Sunday and most of Monday in the hospital. By Monday, she was much improved after getting her medication - by hook or by crook and yes, once by frustrated force on my part. I arranged to have her transported on Monday to a Rehab and nursing facility that has an Alzheimer's unit to get her land legs back and her medications stable. She is being evaluated by a psychiatrist to adjust/change her medications and is doing remarkably well. So well, that I am not stopping by everyday to see her but speak by phone to the charge nurse or doctor when I do not go.

The task now is to find long term Medicaid placement for Mom where she will get her needs met as she declines. I have arranged a visit to one facility for this afternoon and will arrange more in order to find the right place. I do not look forward to doing this again.

That is where we are today. But the story is not over yet, so I hope you will stay with us in spirit. In this case, NO NEWS is probably not GOOD NEWS. It means that I am probably too busy to update you but I will get to it eventually.

In the meantime, my prayers are with all of you for a Blessed and Peacefilled Easter!

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.