June 28, 2011
This update is not written for pity on me, as I have said in the past but for all that read it to say a prayer for my lovely wife as we continue on this unknown journey.
We just got back from an appointment with her neurologist yesterday and the prognosis is not good. Sandra’s symptoms have changed quite a bit since three months ago. When you have discussions with the doctor regarding feeding tubes, hospice, botox shots to relax muscles in your face, etc., it is not encouraging. But steps have to be taken.
The thoughts and what we are going through below were written on June 24 – before we went to her doctor yesterday.
Progressive Supranuclea Palsy
To watch my wife declining like this just about puts me in tears. It is so sad.
I read what others have gone through with this disease and the last stages when you have to insert a feeding tube that no one wants. The agony and pain with a decision like that is going to be just about unbearable. My prayer is that my wife never has to go through that stage. She has told me before that she does not want anything like this that will prolong her life in that state. But you read these other accounts other PSP caregivers go through and you just hope and pray you don’t have to make a decision like that.
As of today, she has gotten to the point that I have to do just about everything for her. She can brush her teeth but will leave the rinse water in her mouth for 15 minutes. Her brain just does not tell her body what needs to be done as far as movements. I help her with everything else. She lies around quite a bit. She can’t walk by herself. I have a power chair but she cannot use it because of the sight. She talks but it is so hard to understand her because her words are slurred and she whispers. She will sit up at the breakfast table, eat a little food, and try to read the paper, clip coupons and set there for two to three hours – kind of in a trance. She stares at the ceiling or at something else for long periods of time with no comments. She can’t see well. She has had hallucinations. I have to hold her up at times because she leans to the right. When she is sitting in a chair without sides, or in the bathroom getting dressed, she leans at a 90 degree angle to the right. During the night, she will try to get off the bed and has fallen many times…it can be pretty tough trying to pick her up at times. But I have to most every day.
When you have had a partner for 43 years and you discuss everything and make decisions together, it is really sad to come to this point. Now, I have to make all the decisions – she just cannot help with those at all. Until recently, she would at least try to get on the computer to do something. I helped her about 2 months ago create her a Facebook account but now her eyes are so bad and the fatigue, she hardly ever tries to do anything with the computer.
My wife will set at the table and hold a glass of coke to her mouth for probably 7 or 8 minutes before bringing it back down to the table. I have to feed her pills usually because she will drop them trying to get them in. You can ask her a question and you get no answer. She has started giving me hand signs to help her get her thoughts out. Most of the time, the whispering is so low, I just cannot hear her. The thought process is just not connecting all the time. You can tell her to put the glass down and it’s just like she does not hear you.
I can’t leave her alone. She’s to the point now that she will try to get up and do something or pick something up and if someone is not with her, down she goes. I have to dress her, bathe her, go to the bathroom with her, at times feed her…….but I do it because I love her. She would do the same for me.
I just friended Ronald Ray on Facebook recently, whom I worked with at Maxton, NC, for a little while during my railroad days. He is the brother to Lois Wheeler, one of my bosses at the railroad when I worked in the crew office. And he gave me a note of encouragement from the Bible….”God promised HE would not put more on us than we can bare”.
I truly believe that scripture but just like all humans, you tend to wonder at times. But with God’s help, he will get us both through these trying times.
And, please, say a prayer for Sandra as I am sure she would love to have all the prayers she can get. I did – last night as we lay in bed she asked me to pray for her as we progress to this next step. And I will continue to pray for my wife.
