Understanding Helps But Does Not Heal

I have been doing a lot of thinking. I can't believe it has been a year since this post, in which I discussed my stepmother's aphasia. I have recently come to understand that there is not a lot of hope for improvement beyond this point.

I have been doing some research online and have found that my stepmother's rapid decline is actually pretty typical. My sister and Andy and I have been saying over the last year, "There's something else going on. There's something they're not telling us." My stepmother has been more and more confused; she sent Valentine's Day cards in late March and is afraid to cook by herself. She recently was thrilled to hear that my stepbrother and his wife are expecting (they had told her at Christmas and she completely forgot). With the litany of confusing behaviors, we assumed that she had some other issues, presumably Alzheimer's.

But I recently joined a message board for caregivers of PPA (primary progressive aphasia) patients and I was shocked to read that this is all normal. We just always thought that her speech would be the only thing she would lose. However, the disorientation we are witnessing is part of the disease. Eventually PPA sufferers become so disoriented they are unable to care for themselves, even simple tasks like brushing their teeth or getting dressed.

I wish someone had told us this in the beginning. I don't know who, but shouldn't a doctor have prepared us? I suppose the neurologist just handed my parents some pamplets about the linguistic part of this disease. We were all told to speak slowly and use as few words as possible. But my siblings and our families were all so unprepared for this recent part of the disease.

Now that I know that her behavior is typical of PPA, I feel kind of bad. I blamed a few family members, whose behavior has caused great stress, for my stepmother's rapid decline. I also wished my stepmother would have stayed in speech therapy and worked harder on word retention. And I thought that maybe if she took better care of herself mentally and physically (exercise, yoga, reducing stress her in life) that things would be different. But I really don't know that any of that would have made a difference. Reading this message board, I see that after a few years, most people with PPA are at about the same level she is.

My stepmother is only 62 years old and she has only had aphasia for four years. At first it was just the loss of words here and there; then it was shortened sentences; now there are very few words she understands. You can hear the excitement and relief in her voice when she actually understands something I say to her on the phone. I think it is cruel that she has to live this way. I know she is depressed and hurting constantly and all of us, her kids and grandkids, are so sad about our inability to connect with her and the confusion we are witnessing. Her aged appearance is startling to me.

I guess I wrote this blog for myself...to put all my thoughts down in once place. I wish I could go to doctors' appointments with my parents and I wish I had more knowledge as we go into the more advances stages of this disease. PPA is not like Alzheimer's - there is not a lot of information out there and it's hard to find people to connect with. I guess now that I know how bad things will get, and how quickly she is declining, I am going to try to visit my parents more often. One thing my stepmother can still do is hold babies. I know that makes her happy so I am going to try to get little SPY guy there a few times while he is still small.

~