Dementia - The Circle, Living with Dementia

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Guest: Dr. Sally Hughes Smith – Author

Host: Dr. Linda Austin – Psychiatrist

Dr. Sally Smith: I am Sally Smith

Dr. Linda Austin: And I am Dr. Linda Austin. Welcome to Age to Age. Let’s talk. Sally, I know you have just out with a new book about your experience with your mother who developed Alzheimer’s disease, the book is called The Circle - A Walk with Dementia. How did you come to write this book?

Dr. Sally Smith: Well, I came to write it as a device strategy really that was strictly for self-help. That was a private diary to help me deal with angst of this very emotional, difficult, sad time in my life when my mother was turning into a child and I was having to realize that made me have to turn into the grown up.

Dr. Linda Austin: And that is very hard certainly for anybody going through it. So many people go through that journey alone either by virtue of not having siblings or being the sole caregiver to a parent. You have three siblings, is that right?

Dr. Sally Smith: I am one of four, yes.

Dr. Linda Austin: And what were some of the things that you learned along the way if you could encapsulate? One or two or three, the most important lessons, what were they?

Dr. Sally Smith: Well, I will have to say I learned a tremendous amount and way more than I ever dreamed. I went into it as a situation just to be dealt with to survive, to try to make the best of, and it ended up teaching me like so many strong experiences in your life, so much more then I ever dreamed. If I had to say what the most important things I learned were I would say number one was the most important thing in dealing with anything like this is relationships. The relationships of the people you deal with in solving them when you used to say when we thought about what our parents had left us, they really left us each other and that it was not worth falling out over details and we should really protect and care and nurture the relationships and then secondary was getting the problem solved, that would be to me the must important thing. The other thing was the awareness it gave me of my own, potentiality of my own life that I was not my mother, I still had time. It gave me a complete adrenaline rush of looking at my life and looking at my life backwards with what would I want to be able to say if I were near my mother looking back over 90 years, what would I like people to say she was like that what did she accomplish, did she open her package, did she use her talents and fulfill her God given whatever, DNA and that was a huge lesson of the awareness factor and there were many others as well.

Dr. Linda Austin: So, often when we have problems in life, we think of ways to solve the problem that Alzheimer’s may not be the kind of problem you can just solve.

Dr. Sally Smith: Well, that was so eye opening because one of the big things also that I learned was that you cannot solve it, we could never fix mother and we look trying to fix mother, we would say all of this Christmas, this is on Thanksgiving, or this is Tennessee, this is in South Carolina, or whatever the things were in. Finally, we realize what difference did it make, what she got to a certain point, there was no need for reality check and I think that was interesting, the key there that helped us the most as caregivers was to realize that each day was a new train that we were in uncharted borders that everyday was a free fall that you?d solve one problem and two days later, the solution was no longer working and it was just such a slippery slope and once we realize that, then we were much easier on ourselves, we weren’t so full of anxiety that we get every single thing right because she was changing so rapidly that we were just along for the ride.

Dr. Linda Austin: What are the things I have seen in families with an Alzheimer’s parent is they try very hard to keep that parent in the present saying mamma, do you know what day this is, do you remember what happened yesterday and you can see mamma getting more and more agitated and frustrated. I have a friend though who gave her mother the gift of an old photo album, in fact actually she gave it to both of her parents, both of whom had Alzheimer’s and they would sit for hours looking at the same pictures over and over again, then go back to the beginning do it all over again, do you think it is okay just to let your Alzheimer’s parent stay in the past?

Dr. Sally Smith: Oh! I think there is no right or wrong, that’s what I think. It is ?whatever works for them, whatever makes them happy, we -- when my husband’s mother lived with us towards the end of her life and she had dementia and we met with geriatric experts and they said when she was still very connected to life, but then should have whole spurts where she was disconnected and didn’t make good sense and so in that situation, they were saying some of these reality testings like it is Monday not Friday can kind of help them like work their mind and keep it in here and now, but once it gets slipperier than that and it is further down the road, I think what’s the point, it is just frustrating. I loved it. My mother -- we went to have a luncheon with the gentleman who was really testing mother to go the assisted living home and we were having this luncheon with her and he was asking her questions and she was answering and then he said well, Ms. Hughes, I understand you have four children, is that right? She said, yes I do and she said -- and the man said how old is the eldest and she thought and I got that look on her face computing and she looked at him just in the most gracious way and she said young man, I don’t do numbers anymore and so she just didn’t do numbers anymore and you just take what there is and go with it. I think that was another one of these lessons that there was so much to get from my mother, so much of just a loving kindness, the basic trust, and personality even though she wasn’t making sense. You just have to enjoy what you get. You cannot turn her back into the mother that is not going to advise you or hear your problems and help you, you can't get that back, but what you can get is the hand held or the timer as lied up, all the way she will put her hand on your face. You just have take what there is, whatever it is in each case and enjoy it because it’s all you are ever going to get.

Dr. Linda Austin: In your book, you commented that in some way your mother’s illness protected her from some realities that might have been very painful for her; otherwise, can you say something about that what did you mean by that?

Dr. Sally Smith: Well, I have come to this realization and in a way it has given me a lot peace. The timing of mother’s dementia was at the time of father’s illness and death and they were a love match and they built a long life, 60 something years of married life and I think she just didn’t really want to be in the world the way it was completely aware anymore. I think she was having some issues and I think she just really almost turned a little switch and in a way it protected her from them grief and loss of my father’s going and also now her indignities. Woody Allen has a wonderful comment that I love and he says. ?I don’t mind dying. I just don’t want to be there when it happens? and in a way this Alzheimer’s and dementia it is the protection of senility. My mother is protected from her deteriorated physical state, the fact that in many ways she has turned back in to a small child and so I say great, I say bring on the fog and just let her just float and not be anxious about it. I think the hardest thing when I go to see my mother is the other people that are anxious. I think that would be hardest to be the child completely aware of your mother in a demented sate and to have her full of anxiety wringing your hands and crying out -- you know, you have been in older people nursing homes and it just -- it is heartrending and if -- but my mother has peace. She is calm, she is peaceful, she has a smile, and so wherever she is, she is not anxious and I think if had a one of the parents that were, I mean, I just want them to have some sort of la-la medicine or something because I don’t think people should just go on in to eternity with that much churning inside them, so in a way her senility has been a wonderful protection.

Dr. Linda Austin: Any final thoughts about what you have learned even since you published this book Sally?

Dr. Sally Smith: I have learned several things, one I will say is I have learned something I never thought about during reading the book, I mean, writing the book that people reading the book have told me and that is that this is your last chance with a parent and you?ve got to almost mind the territory for whatever you need from the situation, not just solve their problems and get them as happy as they can be. What I mean by that is a lot people have families where they have never expressed affection, they know the parent loves them, but they have never said it, you know, they are not wired that way that is something several generations ago; people didn’t say as often, meanwhile, to their children I love you and very physical and my family was physical, so I didn’t that issue, but so many people have come to me that have had that issue now that they have read the book and we have talked about it and they have gone and said things like mother I need you to tell me the words I love you, I need you to say I love you because in some of them with touch, I know someone that came to me after their father died and they had read the book and they realize that the hospice person was rubbing cream on their father’s hand. He was completely aware of everything. He had just gotten where they had coming on rapidly and she realized one she needed to hear him say certain things to her like we just touched on, but the other thing was she never -- she though why is the hospice lady rubbing his hand, I could rub his hand, I could have that experience with my father and she did it and it was very fulfilling for her and I think that is one of the things that have learned even -- since the book. The other thing that have learned is this is my journey, but I had no idea how much is everyone’s journey. Everyone goes through the loss of parents, one way or another and it is tragically early or tragically late and I think the huge connect for the book is that we are all on a journey and we are all connected to this similarity that we all walk through together and it may be my journey, but it is also universal man, it is everyone’s journey and I think that it has shown me how connected the human race is and should be and I think the one of the huge things that has grown out of it is we all have different joineries, but you know what we have in common is we all have the choice of how we walk that journey and your journey is different from mine; everyone is placed out differently, but we all have that space in our brain where we choose to be happy and make it work or we choose to be chirny and miserable and fall apart and yes, there are times when I cried, there are times when I was frustrated, there were times when I was just to pieces, but there were also such times of awareness and love and laughter, and just many, many gifts, so you can't -- I am not saying it was perfect I just chose to be a Pollyanna, but I did choose to see it through the lens of this is a day of my life and I will never get it back, so I am always won’t make the best of it.

Dr. Linda Austin: Sally, I know that the process from this book to benefit the Medical University of South Carolina Center on Aging and we thank you for the generosity of heart and of effort and of outreaching caring in giving this book to the community. Thank you.

Dr. Sally Smith: Thank you.

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