Joe is my social media blogging friend that I discovered has a blog about his own Alzheimer’s. He wrote a book about it that I reviewed here part one on 1/25/11and part two on 2/18/11 here.
Lynn Potocny is what Joe Potocny might call his “better half “ and I have been dying to communicate with Joe’s wife as I have with other wife caregivers on my blog.
Carol: Welcome to my blog, Lynn! I am thrilled you are doing this interview and even that Joe arranged it. Incredible! Apparently your hubby Joe reads Plant City Lady and Friends regularly and he sometimes comments. He teases me about coconut oil and thinks my hubby is cool. I likewise am one of his faithful readers on his blog
How do you feel about my bugging him on his blog? I might be nagging him at times. We caregiving wives have to stick together after all!
Lynn: Go ahead and bug him it seems the only ones that can get away with nagging him are you, his readers.
Carol: Inquiring minds want to know about you. What is Joe’s caregiving wife like? Does Joe think of you as a caregiver? (My husband doesn’t think I am his caregiver.)
Lynn: I don’t think Joe thinks of me as his caregiver. I am first his wife and then somebody that has to put up with him and his disease. If you ask him, I am a nag; ask me and I just care a lot to get things done.
Carol: Lynn, how long had you been married when you started to suspect that Joe had medical issues and describe what is was like.
Lynn: We had been married for about 20 years. He was the one that suspected first that something was not right. He couldn’t remember all the things he used to or the way he did them. He could jump from task to task and not break stride and then he had to start using notes. That was about the time he wanted to retire and I became the breadwinner so to speak.
Carol: How did you proceed when you found about the memory problems?
Lynn: We tried the same thing that others have tried I am sure. Post it notes, long lists of honey dos. He made a list of things that he wanted or needed to get done and checked them off as it happened. Soon he started to forget he had a list. So we are still working on those types of things.
Carol: My husband forgets about his lists also, but still wants one each day I leave the home. My blog was inspired because of my husband’s dementia and I wanted to chronicle it. How and why did the book come about?
Lynn: Joe wanted to deal with the diagnosis and what was happening and I had seen another blog from someone else and suggested he try doing something along those lines. We did not think that anybody would actually read it. It was more for him to have an outlet. The book actually came about because he always wanted to publish something that he has written and this seemed to be the way to do it.
Carol: Two years ago I reviewed Living With Alzheimer’s and it seems from his blog that Joe is about the same. True?
Lynn: As you know they have good days and bad days. He has progressed but he seems to be progressing differently. It seems he has more physical problems and then some more mental problems after using his brain cells for too long.
Carol: You still work as I do. How do you manage with Joe at home? Do you do it all, or do you have help from your family and friends?
Lynn: I was laid off from my job after Joe was diagnosed and we did the HBO special. It took about a year to get a new job and that was fine. I spent that year with Joe. Now that I am back to work I still do most of the stuff around the house, but we have my mother and daughter with us so they help out with things I don’t have time for.
Carol: One of the hardest things for me is to ask for help. People just need to be asked, but it is so hard to ask them and yet this is what we are encouraged to do as caregivers. Then it can hurt our husband’s egos when we ask for help from others.
Lynn: Joe won’t ask for help even from me unless it is the last resort. I don’t ask for much but the family seems to know when I need it and they pitch in.
Carol: I have a worksheet on a clipboard that I use when I leave the house so my husband will remember where I am and what he is to do. What tips do you have for communicating with Joe when you are gone? Do you also leave notes and does he read them (my husband doesn’t always).
Lynn: I don’t bother too much with notes because he does not always read them. I tell him where I am going and hope for the best. Somebody is always around and when he is by himself he is usually getting into trouble on the computer or sleeping.
Carol: Google spilled my name (I used to be NewKidontheBlogg). I keep my husband’s identity (first name) secret on the blog for security. Have you had anyone come to the house or had other security issues because you and Joe use your real names?
Lynn: No, after the HBO thing aired we got some phone calls like immediately afterward. I think some were done within minutes of it being aired. But he had the blog going and people could contact him that way too. In fact it is funny because he used to go to the store with me and after it aired nobody even recognized him at the store where it was shot.
Carol: I am trying to simplify our home because there is enough to deal with. How have you made your home livable for you and Joe?
Lynn: We are not changing much. We would like to find a different place without stairs at some point but that would be the only thing.
Carol: I would imagine early on what Joe wrote on the blog might have surprised you. Do you discuss what he writes on his blog?
Lynn: He has only asked me about a few things that he has written. For the most part he comes up with ideas on his own. Sometimes when we are talking and he is feeling frustrated with his readership I tell him to let you all know what he is feeling and that he is pissed or hurt or whatever. I have only asked him to not always discuss some aspects of our life because I believe they are private.
Carol: Describe the abilities that he still has, the Joe who shines through.
Lynn: He can still be a pain in the ass. He is also the very caring father that he grew to be. You can’t ask for a better friend if you need something that he can help with. Using power tools though not so much anymore.
Carol: Joe fixed your computer!
Lynn: That is one of the things that he can still do even though it may take a while, and it completely wears him out.
Carol: Joe took a trip recently with you. How did that go? He barely wrote about it.
Lynn: We went up to see our daughters’ family for a birthday. It was a short trip because of that thing they call work. He slept a lot but was awake enough to have the kids use him as a jungle gym. They love their papa.
Carol: You have fish in a pond. Any other pets that Joe takes care of? My husband thinks he mows the lawn, but very often neglects it and now we have to get our riding lawn mower fixed because he hasn’t started it up. What does Joe do or think he can do still?
Lynn: We have our daughters’ cat and my mother’s dog. Both animals are small enough to trip him up if he does not look down. He cleans out the cat box and pets the dog. Every once in-awhile he still thinks that he is on top of everything. But he forgets what he is on top of. It took a year for him to work on a chest, sanding, painting that sort of thing, before it would have been done within a week.
Carol: How did Joe’s participation in the HBO special on Alzheimer’s come about? [See http://www.hbo.com/alzheimers/memory-loss-tapes.html] Is it a blessing or a curse? I notice that Joe keeps up with what happens (including death) to the others in the video.
Lynn: It came about because one of HBO’s employees read his blog and when they were talking about doing the special they called and started talking to him. They were talking to a few people in the area who also have AD but they decided to use Joe and we talked about things like “So if you’re filming and he falls asleep are you going to film that?” and what did they really want from him or us. I think it worked out well. It is neither a blessing nor curse that we did it. I do have some wonderful memories on tape now.
Carol: I quoted Dr. Joe Sivak (author of When Can I Go Home) who said: “People like Joe are a gift to the human race; he reminds us to never forget. . . . Joe is not an Alzheimer’s victim; Joe is just a guy who happens to be living with the disease.” Can you amplify this statement?
Lynn: I think he is a person to look at that says, OK I have this now what are we going to do about it? Just because you are handed a death sentence does not mean lay down and cry. Keep living with what you have and make the best out of it while you can.
Carol: The AD loved one is pretty focused on himself. Does it hurt you to not be able to share more of yourself with Joe because he will not remember? Or do you share even if he doesn’t remember later? (I get asked repeatedly how was you day, Carol, and each time I repeat how my day was.)
Lynn: We listen to stories that we have heard quite a few times. I share things but I know that in the future he won’t remember them. Usually within a matter of hours or days.
Carol: We can’t ask them how their day was because they won’t remember! Was it hard for Joe to give up certain things like driving. How did that go?
Lynn: He gave up driving by himself. He had a close call and decided that he did not want to take anybody else out.
Carol: My husband decided to give up driving on his own also. They say that every AD loved one is different. Joe has mixed dementia with Alzheimer’s and Frontal type. Does this shed light on his condition?
Lynn: He threw himself out of bed a few months ago and we got a CT scan done. When we got the results it explained a lot about his problems because there was a spot on the scan that nobody had mentioned before. Having the two types also is why certain drugs won’t help him.
Carol: Joe seems to think that the Alzheimer’s Association is not worth much since they haven’t helped him. Do you go to an Alzheimer’s Association support group? Or how do you get help for coping?
Lynn: No, I don’t go to any support groups.
Carol: I love the Warrior Lament that Joe wrote in his book. He is ready for heaven. “I pray Thee take ME HOME” is so poignant.
Lynn: That was something he just sat down and wrote because of the way he was feeling. Each of our children has a copy of that framed and in their homes.
Carol: About three years after his book was published he seems less angry on the blog and more used to the fact he has Alzheimer’s. Does he accept his “new normal” as it keeps changing?
Lynn: I think he does. He may not like it but what else is he going to do? We joke a lot about his abilities or lack of like his tongue being too big for his mouth when he is trying to talk, but I know he does get frustrated with not being able to do things on his own anymore.
Carol: Joe is a gentleman who signs off “God bless you and this great country of ours.” Is he able to keep up with events in California and our country (not that any of us can)?
Lynn: Don’t get him started on politics. It is amazing what he can retain.
Carol: My hubby and I go to church and Toastmasters together. When we go to the grocery store he wants to sit in the car or on a bench in the store. What outings do you and Joe regularly do together and how does that work out?
Lynn: We don’t. He is afraid of going away from the house. I ask and he says no. Going on that trip was hard but getting him to the home improvement store down the street is harder.
Carol: How do the children and grandchildren relate to Joe?
Lynn: The kids treat him like they always do. Sometimes they talk louder. The grandkids are different. The oldest few know that papa is sick and that he may get grumpy at times. The younger ones don’t really understand because this is always how papa is.
Carol: What advice do you have for other caregivers?
Lynn: First and foremost take care of yourself; you will be no good to anyone if you are sick. When taking care of someone like this, don’t sneak up on them--drives them crazy. Treat them with respect because no matter what they deserve our respect. They are still persons of interest. Let them talk even if you have heard the story 20 times; they don’t know that. Don’t talk down to a level that is demeaning. Coax them to take their medicine, baths, and eat.
Carol: Give us a humorous incident about Joe that maybe he wouldn’t recognize.
Lynn: We have decided that he has a round bottom because he can fall over sitting on the floor. But he knows that.
Carol: LOL! Do hope he doesn’t get hurt. My husband can’t get up from the floor, but he has issues with his skinny bottom. He has to have a comfortable seat anywhere he goes.
It has been such a pleasure to interview you, Lynn.