Challenges and Frustrations - Mom with Primary Progressive Aphasia (type of dementia)
My mom is only 74, but has Primary Progressive Aphasia which affects the communication center of the brain, but memory and intelligence appear to be unaffected. She can see words and know what she wants to say, but often can't get the words out of her mouth. What would normally be a two minute conversation, often ends up taking a half hour or more, just to clear up one thing. She also has a host of other medical issues, including PMR that is an autoimmune disease, lots of arthritis, spinal stenosis which is a narrowing of some areas of her spine, sciatica, needs both knees replaced and also needs carpel tunnel surgery again in both wrists (among other things).
The carpel tunnel in her left wrist has gotten much worse as we've had to focus on other health issues, and now surgery is 8/23/2012. This is where the frustration comes in. In trying to work on getting everything scheduled, and enlist care for her her afterwards, we've had to have many important conversations. I also work long hours (not by choice, but because of the demands of the job), so finding the time to have the conversations is very difficult. I might ask a question, and she can't get the words out to answer it, or somehow isn't understanding me. So after asking the same question, in different ways, a number of times, frustrations start to rise -- particularly in me. I can't have these long conversations at work because I need to be working, but yet I have to have them with her.
I check in with her every day before coming to work. This morning, I asked a simple question, and it became a long drawn out conversation, that I didn't have the time for because I needed to get to work. I had to cut the conversation short, and now she doesn't want to talk with me today, but there's so much we need to accomplish today to be able to see the surgery happen. My sister also works a full-time and a part-time job, so it's hard for both of us to accomplish what we need.
Tomorrow we're sitting down to go over her Powers of Attorney for property and health care, which will be a challenge, especially since she has decisions to make about her health care. Then we need to go to the bank and have it all signed, notarized and witnessed. My concern there is whether we'll be able to make it to the bank before they close at 1, if our conversations again take forever. This is likely the last chance to have them signed up before the surgery, and since we've seen a decline in mom, we believe this is an essential thing to get taken care of before the surgery.
So here's what I'm looking for: (a) advice, suggestions on how to perhaps facilitate bettter communication with mom, especially when the conversations are essential (and especially if you have a loved one with PPA and can specifically relate); and (b) some support and suggestions for how to better cope (which I am not doing very well -- am actually losing it fairly often).
I love my mom dearly, and we have a wonderful relationship. But it's extremely challenging right now, and I could use all the help I could get.
Thank you kindly,