Sunday, May 24, 2009, at 3:00 AM

Mom fell in her room. It seems to be more of a "slide down" by the side of the bed. We are not sure what she was trying to do by getting up without the help of the care givers. Fortunately she did not get hurt, just a scrape on her elbow. However, this did exhaust her, and she spent that day and the next in bed.

Tuesday, June 2, 2009

I had to change mom's insurance since her current insurance does cover Simi Valley. The new insurance became effective on Monday, June 1, 2009. I had scheduled a doctor appointment a couple of weeks ago knowing that the insurance would be effective by the time of the appointment. I scheduled the appointment at 2:00 PM which is the first appointment in the afternoon and all the exam rooms would be empty. I made arrangements for them to take her into a room as soon as we arrived and let her lie down on an exam table/bed.

So, I took her to the doctor today, which she did not want to do, and it really tired her out. She weighs 88 pounds which is down from 104 before she fell in March.

The doctor checked her out and reviewed her medical records, but he can't do much until I get her new insurance card. He was hesitant to order a blood test due of all the potential confusion with the insurance change which could have us end up with a big bill. He is going to get a case worker assigned to her so that someone with "authority" can evaluate her needs, including possibly a mobile blood taker. It is not practical to take her to a blood lab or even back to the doctor's office just for a blood draw. However, none of this can happen until I get the new insurance card.

I asked about an X ray to determine if the fracture in her back had healed. It seems that it has since she does not complain about pain lately; she is getting Extra Strength Tylenol instead of Vicodin now. Again, it was a problem with not having an insurance card. He did say that they had some kind of program going for Osteoporosis, which she seems to have developed since the fall, where she could get a free body scan and X ray. I first thought this would be OK, but after getting her back into the wheel chair, I knew that she could not tolerate more times up and down on tables, so we had to pass on it.

If I had known about this insurance hassle, I certainly would not have scheduled a doctor appointment until later. The day was totally trying for mom.

They now believe she has Sundowners Syndrome since she gets confused and agitated in the late afternoon.

Sunday, June 7, 2009

Mom has been using a fold up walker which was obtained from the insurance. I had asked for a four wheel walker, but, of course, they did not send her one of those. We now have four fold up walkers which do not work well at all. She has used a four wheel walker at the adult residence and it works much better for her. So, after hasseling with the insurance company, today I went to Costco and bought a four wheel walker for her. I will take it to her tomorrow, and I am sure that it will make her life much better. She has a terrible time getting from one place to another, but at least she can walk where she needs to go - with the assistance of a walker.

Tuesday, June 9, 2009

I finally got the insurance card yesterday evening, and I took it to the doctor today. I got a call back this afternoon telling me that they had submitted a request for the case worker and the mobile blood test. Maybe now we can get some answers. Is this too much to hope for?

Thursday, June 11, 2009

Today a nurse from Home Health Care visited mom and evaluated her. She is going to talk to the doctor tomorrow about her needs. It seems possible that they will provide Vital Care which is for high risk patients. I will know more in the next few days (hopefully).

They are now beginning to suspect that she has dementia due to her confusion and continued rambling. She is calling the care givers multiple times during the night wanting to know what time it is, and asking if it is time to get up. Then when it is time to get up she does not want to since she was awake most of the night and wants to sleep all day. They should be performing some test shortly to determine if this is true.

Saturday, June 13, 2009

The nurse from Home Health Care came this morning to get a fasting blood sample before breakfast, not that mom has been eating anything.

Yesterday afternoon I got a call from a doctor from Home Health Care. He said he was going to the Care Cottage to check out mom, and I met him there this morning. After evaluating her, he told me that it would be best to put her on Hospice. She has been still staying awake all night and not eating. He also told me that her behavior is due to the brain not deteriorating like the body. She has lived in her own environment for a long time, and now is living in unfamiliar surroundings. This causes the brain to become confused. Since March 8, 2009, she has been in the hospital, the Camarillo Health Care Center, and now this adult residence.

The nurse who came from hospice this afternoon got permission from the doctor to give her a "strong" sleeping medication which would essentially dope her up for a couple of days so that she can get caught up on sleep. She also told me that mom not eating is due to the body not feeling hunger pains like normal.

It seems like she is awake all night because she thinks there is no one in the house with her. Since she is keeping the care givers up all night too, Marilea has agreed to spend the night with her in the room to take care of her and to reassure her that someone is there with her. I will do this tomorrow night and each night next week if necessary.

Monday, June 15, 2009

The Hospice nurse/doctor prescribed some new medication for mom for sleeping and appetite which is to be given to her every 8 hours. There also is new medication for pain and constipation to be given to her as required. She still compalins of pain in her back and legs even though the fracture seems to have healed. I don't know if we will ever get an X ray.

Marilea spent the night with mom on Saturday. She told me that mom slept until about 3:00 AM when she wanted to get up to go the bathroom. She then slept until about 6:00 AM when she began sleeping and waking. Marilea spent the night in a recliner in the room which turned out to not be a good chair for a good night sleep. She ended up watching DVDs on her portable DVD player most of the night.

I then spent last night (Sunday) with mom in the same chair. I gave her a dose of the new sleeping medication at 10:00 PM and again at 6:00 AM. This is supposed to make her sleep, and it seems to be working well. She slept all night from about 8:30 PM until 6:30 AM when I left and came home. Mom slept well but I did not in that chair that is not a bed. Both Marilea and I took a long nap when we got home.

After spending so many weeks trying to get some professional help, it is really nice to finally have the Hospice help. It seems that there is someone coming to check on her constantly. I just hope this continues like it is supposed to.

The Hospice people tell me, on one hand, that Hospice is not for those who are dying like I had always thought. It can continue for months or years with periodic evaluation. On the other hand, they tell me the symptoms that mom has, not eating and drinking, constipation, agitation, sleeping all day, and etc. are signs of the dying process.

Thursday, June 18, 2009

Tuesday evening, I got a call from mom's primary care doctor concerning the results of the blood test. Her kidneys are functioning at 50%, she is anemic, her calcium is high, but her thyroid is normal. Her blood pressure is low now too. He stated that this is about normal for a person her age and there is nothing that is fixable. If she was younger, they would consider trying to correct some of the problems.

Monday night I got a call from the care givers at 2:45 AM telling me that she was not sleeping and keeping everyone awake. I went over there to calm her and spent the rest of the night keeping her quiet. Tuesday morning I contacted Hospice and told them about this. I got a call later that day from a nurse telling me that they were going to give her some stronger medication to make her sleep. She said that it usually takes adjustments to the medications before they find the one that will work. I talked to the care giver on Wednesday who told me that she had slept that whole night and was hungry when she got up for breakfast (unusual). In the afternoon she became agitated so they gave her some of the medication and it put her to sleep.

One of the main objectives of Hospice is just to keep her comfortable. There is really nothing else practical that can be done for her.

I visited mom around 1:00 PM today. The care giver told me that she is sleeping through the night, due to the medication, but she is constantly calling for her brother; "Clarence, come take me with you". They had two big chairs propped up against the bed because they found her up in the middle of the night with her feet on the floor and hugging the guard rail on the hospital bed.

When I walked in today, the care giver was just changing the diapiar because it was wet. This is very new as she has been using the bathroom all along. The hospice nurse ordered some diapiars because she said "she would need them". She told me on Saturday that this would happen and it has.

The care giver told me that she did eat some lunch today. Not much, but some Insure and some soup. I am not sure that she even knew if she was eating. So it seems like she is in a state of flux - coming and going.

She did not recognize me today. She kept mumbling and gave me a blank stare. I tried to get her to acknowledge me by talking to her and shaking her leg and hand, but she just said a few mumble words and closed her eyes in sleep again.

Friday, June 19, 2009

1:00PM: I called to see how mom is doing. The care giver (Lucy) told me that she is asleep. She told me that she is still mumbling and making no sense. She also said that mom removed her pants and socks in the night. So, I don't think much has changed since yesterday. I just put a call into the Hospice nurse to see if she could tell me if this is due to the medication or the dying process. According to the literature I was given, this is typical of the last one to two weeks of life. I am not going over there today. After so many tears yesterday, I don't think I can continue to see what is happening.

7:30PM: I called again and was told that she is asleep. The care giver (Anna) said that she fed her today. She tells her to open her mouth and she does with no objection. She told me that mom had taken off all of her clothes in the middle of the night. They also found her sideways in the bed with her feet hanging over the hospital bed rail. Now she is calling for her father, "father, come get me".

Anna said that Carole (the owner) was there today and also was very upset about this to the point of tears.

I have not heard back from the Hospice nurse. I hope she will call me tomorrow.

Saturday, June 20, 2009

12:30PM: I called and was told that mom was asleep and that she had slept all night.

6:45PM: I just talked to Anna, the care giver. She told me that mom was awake most of the day and is now awake in her room, but she is picking at her clothes. She had quite a lot to eat today and was talking to Anna as she was being fed. She told her to open her eyes and she did, open her mouth and she did. She said that mom knew who Anna is. When Carole came this afternoon, mom knew who she is. Carole gave her some yogurt for a snack and she ate it. They are not giving her the pain medication now, only the Ativan for agitation and Trazodone for sleeping. She seems to be more alert when the sleeping medication is out of her system.

Sunday, June 21, 2009

12:30PM: I stopped by after morning services. They had just fed mom, mostly some Ensure, and she was back in the bed. She was asleep and would not wake to recognize me. I would talk to her and she would mumble something and go back to sleep. She opened her eyes one time, but there was no recognition that I could tell. They had taken the blankets of her because she was wrapping herself up in them and they were afraid she would suffocate. She seemed to be cold so we put the blankets back on her and notified the care giver that we had done this. We think she said (mumbled) "that's better". We also noticed that her upper lip and chin were beginning to turn blue.

Monday, June 22, 2009

I went today at noon so I could see what was happening at lunch time. Anna was feeding her some blended soup, yogurt and Ensure. She was eating, but I don't think she knew what she was doing. In the middle of lunch she started saying "toilet", so Anna put her on the commode and she went tinkle. She wanted to lie down so Anna laid her down and fed her some more. She ate, but not much.

After eating, she went to sleep. I stayed there awhile talking to her and trying to get her to wake up and recognize me. She opened eyes two times but did not show any signs of recognition. One time she said "I don't have any eggs".

Anna told me she slept all night. They got her up for breakfast, and she ate some Malt O Meal, Yogurt and Ensure. Then she laid down and slept all morning.

The Hospice nurse noticed the chairs surrounding the bed (who wouldn't notice) and ordered a full rail for the hospital bed which came today.

5:30 PM, I just gat a call from the Hospice nurse. She was there today and said that mom was too sleepy. She has cut down on her medication and will visit again on Wednesday to determine if it is working.

Wednesday, June 24, 2009

Today, Carole (the owner of Care Cottages) told me that mom has not slept for the last two nights. She has been agitated all night, and the medications do not do anything for her. I was there about 1:00PM today, she was asleep, and I could not wake her at all. Even Carole could not wake her up. She thinks mom is totally exhausted from being awake all night.

Last night, in the middle of the night, they called Hospice who worked with them over the phone telling them to try different things. Nothing they tried worked. This morning they sent a "special" nurse to see her and was there most of the morning. They are consulting a doctor today to determine what to do in terms of medication. Tonight they are sending someone to stay the night with her to try and determine what is keeping her awake.

Yesterday, Carole fed her some lunch, and she seemed to be alert saying her name and eating. Today, she had some breakfast but no lunch since she will not wake up.

Carole told me today that mom still is aware enough that she will not use the diaper. She wants to get up and use the commode. She told the care givers that this is why she is removing her pants, and when they see this they should immediately get her on the commode.

6:30 PM, I just got a call from Vitas telling me that there will be an LVN with mom from 4:00PM tonight until 8:00AM tomorrow, and then again the same hours tomorrow.

Thursday, June 25, 2009

Today I went to Oxnard so I did not visit mom. It is now 6:30 PM, and I just called over there. Anna told me that the LVN was there with her from 4:00 PM yesterday until 4:00 PM today. There will be another LVN coming tonight at 12:00 AM until 8:00 AM tomorrow. The nurse last night saw what is happening and they adjusted some medications, but nothing seems to be working. She was awake most of the night moaning and calling the name of various people. The medication she was given put her to sleep for about two hours, then she would wake up agitated. Hopefully the LVN seeing what is happening will give some insight into what a solution might be.

Anna said she ate well today, but she has been sleeping most of the day.

Friday, June 26, 2009

2:00 PM, I got a call from mom's "new" Hospice nurse - he is now her nurse since he lives closer to the Care Cottages. He said they will increase the Adivan dose tonight so that she should be less agitated and should sleep all night. They will still give her only one tablet of Trazodone. She is still sleeping in the day and awake at night calling for her mother and other people. He said that this is an indication of Sundowners Syndrome which is caused by a gland in the brain that measures light and shrinks with age so that it does not function correctly. The syndrome comes and goes as is evident with mom.

He said that she has a bruise on her right ankle that she keeps holding. She has not complained about pain, but the holding indicates that it hurts; probably from one of her falls. He asked the care giver to put a warm compress on it to ease the pain, and she seems to be comfortable now. If the pain continues he will prescribe some Vicadin tonight. I asked him not to do that since it makes her say and do weird things. He said, OK, he would try Tylenol first, but she is already doing weird things so that it might not affect her anyway.

He told me that it is normal for people to behave the way she does when they fall and break something. People tend to lead an active life while the body and brain are still functioning properly. Then they have a fall, and even though the fall does not directly affect the brain, the brain acts as though it has been injured also.

I probably did not explain the above exactly the way he described it to me since I do not totally understand all this medical terminology.

I did not go there today, but probably tomorrow.

Saturday, June 27, 2009

Today was the saddest day yet. At 8:30 AM, I got a call from Carole telling me that mom has taken a turn for the worst. After being agitated most of the night and calling for her mother and father, she is now not responsive and congested. The nurse has put her on oxygen since she is having trouble breathing. They also have given her some of the pain/agitation/sleeping medication that contains morphine.

I went there about 10:30 this morning. She was resting comfortable and did not move the entire time I was there. I kept talking to her, but she did not respond in any way. There had been a Hospice LVN there with her all night and another LVN was with her until 4:00 PM this afternoon. There will be another LVN coming to stay with her from 12:00AM until 8:00AM tomorrow. The nurse listened to her lungs and said that the congestion had gone but her breathing was labored. I could tell that her breathing was not normal since she would take several real deep and noisy breaths then not seem to breath for several seconds. I left about 12:00 PM.

I went back at 2:00PM with Marilea. They had changed the bedding and she was in a different position but still did not move the entire time she was there. The nurse told us that it was good medicine for her to hear Marilea and me talking. Even though she probably did not hear what we were saying, she could hear us and she knows our voices.

Today was very hot day in Simi and they had turned the air conditioner on. I was beginning to feel the cold so I asked the nurse to cover her with a blanket since all she had on was a sheet. Mom has always been cold. She told me that people in this condition do not feel the heat or cold. She had taken her temperature which was 99 degrees. They do not like to cover her because if she gets too warm she can develop a fever. She did not eat or drink anything today which the nurse says is normal with the shutting down process.

Sitting there today was very difficult for me. I kept thinking about her life, and now I see her in a state where nothing matters. I am not sure that she even knows or cares about her condition. Trying to get her to wake her up enough to recognize me left me with a total feeling of emptiness.

Kristine is coming here on Monday, arriving at 9:00PM. I told mom that she was coming and that she should hang on until Kristine arrives. I am praying that she can do that.

I left about 3:45PM.

Sunday, June 28, 2009

There is really no change today. I was told by the person staying with mom today that she was a CNA (Certified Nursing Assistant) not a LVN. The person who came today at 4:00PM was a LVN. So in all my notes, I am not always sure whether the person for any particular shift is a LVN or CNA. I keep referring to people coming at specific times. There are people from Hospice who, for the most part, stay with mom around the clock. There are, however, some shifts that are not covered.

Since she has not taken any liquid (or food) for two days, they are swabbing her mouth periodically to moisten the membrane in her mouth. The CNA today told me that as the swab is being pulled out mom bites down on it for the moisture. They seem to be doing this quite often since I saw a lot of swabs on the dresser next to the bed when I was there at 12:30 PM, but only two left when I returned at 3:30 PM.

Yesterday, between 4:00 PM and 12:00 AM, there was not a LVN or CNA with her. When there is someone with her they can tell when she needs some Ativin medication when the agitation is coming on. Consequently, mom became agitated until the 12:00 AM person was able to get her calmed down again. The nurse today instructed the care givers on how to watch her and administer more Ativan when it is necessary. They are giving her a minuscule amount of Ativan on a frequent basis rather than a large dose every so many hours. This seems to be what mom needs since it keeps her resting comfortable.

Monday, June 29, 2009

4:40 AM, I got a call from Victoria, the CNA who has been staying with mom for the last several nights, saying that mom had passed away at 4:18 AM, and that she was very peaceful prior to her passing. We were hoping that she would wait until Kristine arrived tonight. Victoria said it seemed as though she was trying to wait, but it seems that the Lord had his own agenda.