Who Knows

Just a bit about Jan's condition. She is better, now define better. She no longer is agitated and striking out. Previously I have mentioned how she walks leaning to one side, well that returned. We have a pretty good idea which drug causes this but we are waiting and working with these new drugs. We are just trying to be careful and not cause the agitation to return. Her strength is better, but she may never get her strength back to where it was two months ago, that is just where we are.
She seems to be sleeping good and her eating is good. This disease is really hard to predict. It's hard to tell what is a symptom and what is the disease. What can you help her with and what do you have to settle for?
I had to make a trip to the doctor to get some emotional help. Seemed like I was crying all the time. He put me on some antidepressants and they have helped and I feel better since taking them.

September 19-21, 2011

Medicine can be wonderful at times and awful at other times. Doctors are smart, but not so smart about other things. So much that we do not know about these diseases. This week we are all happy that a smile has returned to Jan's face instead of the agitation we have seen in weeks past. Her smile is a great one and it makes the day for everyone where she lives. Gaining strength each day, walking again. Getting all over the building. One thing that seems to be returning is the walking with a lean. We seem to be pretty sure that one of her meds are causing this problem. We had this problem before and when we took her off of some of the meds she got straight, so we have it narrowed down. The problem is that we will accept some lean, as long as we don't have the agitation. But things are going pretty good at this point in time. thanks to everyone for their prayers and concerns.

September 17-18 2011

Saturday was a good day. Jan had reduced agitation, eyes were open and what I couldn't believe she was at times finding words to speak. Not repeating what she hears, but finding her own words. She carried on brief communication with the hospice nurse and myself, one or two word responses. Her level of awareness was up greatly from the previous week. One thing that looks like it may be a problem is the level of weakness she exhibits. We are using a wheel chair to move her around, but she is able to walk some. Not as stable as we would like but walking. We have taken her off of constant care with hospice due to her progress. I guess that is a good thing, but falling is still a possibility. Reducing her agitation was a major goal in changing her meds, and it looks like we are on the right track. Praise God.
Sunday was not quite as good as Saturday, but progress will be slow as she adjust to the medicine. Several times over the weekend she pocketed her medicine and spit it out once the nurse left. I witnessed it twice. She takes her meds with pudding, but still I'm sure there is a bitter taste to the pudding. All total we are making progress. I'm not sure we can expect her to return to where she was before the anger started. Her condition is vulnerable and the state of weakness may place her at even greater risk.
Thanks for your prayers and continued friendship.

September 15,2011

This is a post from seeing Jan yesterday.
Jan was very sleepy yesterday. I could not get her to eat, just a little food and drink. She basically could not stay awake long enough to eat. I certainly did not like the drug state that she was in and no one else did either. Her doctor showed up about mid afternoon. He described what was happening this way.
"We needed to get her agitation under control so we have done that. Now we need to back off of some of the meds to see if we can get a more balanced behavior. So we are eliminating some additional medications that should allow her to be alert again, but hopefully without the agitation."
Jan has become extremely weak over these last two weeks. I am very concerned with that and unable to know if it's disease related, or drug related. We won't know that for a while. To get Jan out of the room we have ordered a wheel chair with a reclining back so that we can allow her to get out of the room. On this day it appears that we may have taken a step back from the previous two days. I'm anxious to see her on the 16th and I hope by the weekend we have better results.

September 14, 2011

Jan was about the same for the most part. Still had some agitation however, but not as bad. Confined to her room and isolated from the other residents. Jan has continued to eat well, but needs some of her body functions to step up and be active. Concern for that has risen. I guess there is a real chance that her body functions will shut down.
Tomorrow we see the doctor who will further review her symptoms and the drugs she is taking. I may give you the doctors report in another posting from today. God bless everyone.

September 13, 2011

I waited to go see Jan until later in the day. I wanted to give the new medicine more time in order to see if I could detect any improvement. When I entered her room my hopes were high and I have to admit I was filled with anxiety. This had to work.
As soon as I opened the door, she was sitting in the recliner and she gave me a smile, a good smile, pointed her finger at me as if to say, there you are. She also mumbled something. That was so very good. She obviously recognized me. She ate all of her dinner and the jerking and agitation movement were all at a minimum. The last few days I have been saying to the nurse that Jan's awareness to things has been rising ever so slightly. It was a little stronger on this day. Thank you all for your prayers. Doctors can only do so much, but prayers to our God can work wonders.
We should all keep in mind that things can change quickly. Even though Jan is young, the outcome probably remains the same. But, working to make her more comfortable, no pain. We don't know how long this will last or if we will see greater improvement, but things do seem to be improving.
She did respond to some of my questions yesterday and it was so good to hear her voice.

September 12, 2011

Went to see Jan early as I wanted to speak with the nurse and the hospice nurse. When I arrived they were already in the office discussing the situation with Jan. Everyone is trying their best to make Jan more comfortable. Her doctor is responding over the telephone quickly and everyone is thinking about the situation. Of course I have my opinions as well and I know I can be a little overboard but I think that sometimes doctors don't follow or use common sense especially if they are dealing with a lot of patients. Jan's doctor has continued to win my favor in the way that he has managed her meds. He is not too quick to give up on what he thought was the correct course of action and jump to a new course, or new plan.
I found out that the nurse where Jan lives spent the weekend doing research on meds that could help Jan. She loves Jan and hates to see her in this condition. That pleases me very much, so we just cry together sometimes. I have to think that our new plan of action will improve Jan's condition. With so many prayers to god for relief and comfort this is going to work. In a week she will be better, I just know it, it has to work.

Last Two Days

Five days was enough to be away from Jan, so Saturday I was going to see her and the medical group felt that it might help. Jan remains isolated, still agitated as of yesterday. I walked with her and as we would near anyone the agitation became obvious, so off to her room. It's not easy to maintain her isolation. She constantly wants to get up and when she does, she might throw the lamp, if it's available, or grab anyone. We have taken her off of two medication to see if that might help and of course it takes time to get the drugs out of her system. I prefer a delayed change in meds or else it will be difficult to tell what is working and what is not. We are not going to add anything new until we have had a chance to evaluate what is working and what might work.
Saturday when I first entered her room, I sat on the bed next to her sitting in a lounge chair. Her eyes were closed and she seemed really drugged out. When I called her name I was thrilled that she recognized that voice, turning her head, and trying to open her eyes, even a little smile. So even though the agitation remains I think there may be a little higher level of awareness. On Sunday the same was true, some understanding on her part, but still a lack of control. My hope is that some level of understanding continues to rise within her as she gets further and further off of some of the meds. I really do cherish the few times when she can utter a few words like she did yesterday. I was having to help her remain in the chair and she clearly said, "Don stop". I haven't heard her speak in so long, I really logged that into my memory.

Her Condition- unchanged

Today, we are still trying to find what will work to decrease her agitation. She remains isolated for the most part from the rest of the residence. Hospice has placed a RN with her full time, not just a caregiver. I can't imagine what must going on inside her body. We seem to just want to keep on giving another drug. I can appreciate the position of the doctors and nurses, but it also opens my eyes to the real fact that there are more things they don't know than what they know. In this type of case patients become lab rats to see what works and what doesn't. I have allowed them to try most things they have recommended for this past week, no improvement. Information is available on all the drugs along with side effects. This morning I said no to a plan to add additional drugs to her medication. I also requested that we begin to look at what she is taking and eliminate things. We have been on some of these medications for over 6 years. We know that dementia is a problem, but long term dementia medication can have side effects. Are they really still needed is the question and could they be causing a problem? That is my question to the doctor and nurses. All I can do right now is pray that God will guide our path to get Jan some relief. Thanks to all of you for continuing to pray for us both.

Anything that works

We have changed her medicine and man that scares me. Those drugs are very powerful. I hope and pray that her good health serves her well during all these changes. Yes, at this point anything can happen. Stroke, heart attack, system shut down. You can't even just stop taking the drugs, you have to slowly take someone off the drugs. The drug Haldol is the main player right now. I give you that in case your interested in that sort of thing.
I am remaining at home today. May be the longest time I have ever been away from her. Today, we are trying to keep her in the room and away from the noise and activities. Hoping that the calm atmosphere, along with the new medicine can make Jan more comfortable. It sounds like restraint, but she seems to be okay with it at this point, I keep checking. A nurse is with her 24 hours.
I hear from a lot of people and I want you to know that you help me get through the day. Words cannot express how appreciative I am of all of you, God Bless each of you and I will give thanks for such friends.

Home Again

Hospice Doctor called early to discuss options for Jan. She is under constant care from hospice and we know that she did sleep through the night, but when she got up she was highly agitated just like the day before.
We discussed her medicine this morning. The doctor asked if I was open to changing her medication and I obviously am very interested in what we can do. Interesting that she asked how long Jan had been on Namenda, which is one of medications that is given to anyone who begins to suffer from dementia. It's been over 6 years that she has been taking that drug. She was going to discuss with another doctor the idea of taking her off namenda. I told them that I was open to this idea, as she can always go back on it if solutions are not found. We are discussing and they are considering very powerful psychotic drugs that are used to treat multiple mental conditions and helping patients control their behavior. Not the first time they have been used.
I will stay away again today and leave the professionals to do their work. I just pray that they can find some method of giving Jan some relief. These are all symptoms of the neurological system being under attack. It's a disease of the entire body and not just the brain. Your prayers are appreciated. Pray for comfort and relief from the urge to strike out at others.

Sitting at Home

I got a call from the nurse at Autumn Leaves and she recommended that I might want to take the day off as Jan was having a very bad day. Scratching, choking, pinching anyone that would come close to her. It was necessary for the nurse or the Executive Director to keep Jan in their offices. As you know Jan really likes to walk, but she would also come into contact with other residents and she just could not keep from attacking them in some way. We have call in hospice for constant care. AL cannot keep someone with her all the time. Hospice will also be working with the nurse and doctor to try and find a solution for Jan. New drugs don't necessarily guarantee success. Some work, some don't. It takes time to determine success.
I kind of felt like this was coming due to her behavior towards me the past two days. The best thing we can do for her is pray that we find a solution that works and give her some comfort.

Just when you thought

Well I really thought that we may have found a solution, but things don't always go as you think they are gonna go. Today, which is Saturday, she is back to being aggressive, putting her hands on other residence, gritting her teeth and not wanting to cooperate with anyone. Monday I will sit down with the nurse and put our heads together to try and figure out what happened.
Yesterday, she was a little sleepy, but still moving around and not being aggressive. She really seemed much better, so for any one of your who have been reading this blog, you know by now that things can change day to day, and they have.
I don't know if we can continue to keep her at this location if she continues to be aggressive because they can't be with her every minute.
She really doesn't look good out of her eyes, but of course that may be the look she wants to give me. She is not aware of anything that is going on, seems very confused.

A Better Day

While yesterday was very difficult to witness personally, today was a bit better. Better is certainly relative. Today she was less aggressive, even had a smile for me when I walk up to she. Did not get one yesterday, so a smile was nice. After I turned her over to the nurse yesterday, the nurse was ready with a new drug that we had all talked about and we had it on the shelf. So today, Jan was more comfortable about things in general, not walking like speed walking. She also will sit and rest at times, sometimes for a long time. She took a 2 hour nap after lunch. I took her a piece of Coconut Cream Pie, and she loved it, so I did good.
We will just need to wait to see how she adjusts to the new medicine to see if it really helps her over the long haul. It did today and I am grateful.
Hospice also brought her a new bed that seems to be an improvement, we shall see.

Life is not easy

Today, I went to see Jan early, due to having some things to do in the afternoon. When I found her she seemed okay. Did not recognize who I was, very sure of that. One of the caregivers wanted to take her to be changed so I went along to see if I could help. Jan resisted with force. Grabbing the caregivers shirt and just gritting her teeth and muttering ugly sounds. We decided to just check her standing up and so we did and she was fine.
We walked for a while longer and she just became more aggressive so I took her to her room to lay her down. She sat down in a big chair and was out in no time. Slept for about 45 minutes. Time for lunch so I got her up and she was out of control. Mad, trying to pinch me, pushing me. I have seem her that way one other time. It was in December right before I put her in her new home. I walked Jan to the nurse and she said she would take care of her and that she had the meds to help her. I left with two people trying to get Jan to sit for lunch. She was out of control.