I am very lucky. I could not ask for a more caring and open Doctor for LW's care.
I am able to communicate with LW's neurologist by email and she always answers anything I ask within a day or two.
A few days ago I asked her where we stand with LW's prognosis. Her answer is follows:
Below is a statement regarding her condition and my professional opinion about her prognosis. I hope this helps you. Please let me know if there is any additional information that may be helpful.
As you know, She has a diagnosis of Alzheimer's Disease. This condition is due to abnormal proteins building up in the cells of her brain, leading to cell death and cognitive decline. I suspect she has a particular sub-type of Alzheimer's Disease that predominantly interferes with her speech/language and her ability to communicate. This sub-type tends to progress more rapidly than what is expected for more traditional Alzheimer's Disease. It may also appear to progress more rapidly because of the significant interference with the patient's ability to communicate.
She requires 24 hour care not only for her safety, but also to assure she has taken her medications, eats, toilets, bathes, dresses, etc. These needs are being met in the home between your care and the care that you have arranged for while you at work.
Her condition will continue to decline. We are currently seeing significant changes every 3-4 months. She will have more and more difficulty communicating, which will become increasingly frustrating for her. She will require more help with bathing, dressing, eating, etc. She may develop more difficulty with swallowing. I do not anticipate a problem with ambulating. However, if this occurs, she will likely require skilled nursing care for bathing, turning, changing, medication administration, etc. This would be provided in a nursing home environment.
I hope this is helpful. Please let me know if you have any questions.
My question is can you think of any additional questions I might ask?
Reading your post brings me back to the day when I went to the N's office to pick up the documentation for H's disability applications and the content of the reports was all to similar (although he has FTD).
I remember reading the reports in the hospital lobby and just having a surreal feeling. I had almost the same feeling, but not as intense, on my way to the first ALF I visited. I did not feel disassociation, like I was not there but instead felt like the world in front of me was turning over. (He is at home, but this is not my or his N's choice.)
JimB-- The Dr. covered it very well.The only variation I might suggest as possible,would be if you brought in Hospice toward the end and might keep her home---if that's what you wanted.
Hospice has been involved to some extent since last November but very little. They call me once a month to see how Kathryn is and if there is anything they can do for us. Last November they asked me if it would be ok to add Kathryn to their call back list. That they would like to keep up with her condition and provide any assistance they could.
We haven't needed them yet but it is nice to know they are out there if we do. I plan on keeping Kathryn home as long as I can take care of her and she knows who I am and where she is and is happy being here. When she was first diagnosed we talked and she told me she did not want to die at home. I think because she knows I would not be able to live here if she did. I'm not sure it would make a difference. I don't think I could regardless. Every time I walked into a room I would just remember that she was no longer there and I would just miss her too much.
The doctor and hospice both have said that they believe she has about a year but I don't see it. Physically she seems to be holding her own. Mentally she is declining fast. That I can see. I think she has longer unless the end comes on really fast physically. Maybe it is there and I just don't want to see it I'm not sure.
What I do know is I don't want her to be in pain or scared. I would rather lose her tonight than have her suffer as much as it would hurt me to lose her.
Jim, it is so comforting to hear from someone whose thoughts are the same as mine. Lloyd is 61 and was diagnosed in January of 2009. The doctor said it had probably started 5 years prior. I know he was having problems talking as early as 2006 and some comprehension problems. Lloyd is happiest in familiar surroundings. There were times (not lately) when he was afraid and would cry and I would tell him that I will be right there with him to the very end. The day he was diagnosed, we knew it was a death sentence. He can only walk anymore, but falls occasionally so we will be picking up a wheelchair today. I do everything else for him- bathing, dressing, feeding, holding his glass so he can drink, putting his pills in his mouth. He is still using the bathroom and has very few accidents. I make sure he goes first thing in the morning and the last thing at night before we go to bed. I have to pull his pants down, wipe him, and pull them back up; but he still goes. Lloyd had his first seizure in April 2011 and went into respiratory arrest in the ER. Since I did not have a DNR (do not resuscitate order) at the time, they brought him back. I do have a DNR now and a power of attorney that I carry with me at all times. I was just so angry and felt so guilty that I could not stop them from reviving him when it would have been so easy and so quick for him to go. I just hate this lingering frustrating confusion that he has to go through every day, but am thankful for his being happy most of the time in spite of it. Friday we leave on our last vacation. We are leaving Ohio and going to Florida for 2-3 weeks to stay with family. He will get to walk on the beaches one more time and see the ocean and spend one day at Disney in his wheelchair. Our 18-yr.-old grandson will be traveling with us, doing most of the driving, and carrying Grandpa if he has to. Jim, you are an angel...Kathryn's angel...sent from God to care for her until he calls her home.
jim you are doing a very good job caring for your Kathryn. your love and devotion comes thru clear as a bell. your neuro is a fine fellow to reply and update you on her condition. its all we can ask. divvi
Thanks divvi, Kathryn's neaurologist is not a fellow. She is a lady and I don't think I could have gotten a better more caring neaurologist. If I call at anytime she always returns the call as soon as she gets it. I have had her call on a weekend to see how Kathryn is doing after a visit. It was like winning the lotto when we got her.