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Alzheimer's Journal Offers Suppor to Caregivers

When times get tough, sometimes writing can serve as a balancing force to help us see greater meaning as we traverse the storm that is upon us. Marie Fostino kept a journal while caring for her father-in-law, Joe, as he gradually sucombed to Alzheimers. She has since turned the jounal into a guide of support for Alzheimers caregivers and an inspiration to us all.

MF: I want to thank you very much Jamie. I am honored. Since I have met you, the experience has been very exciting. I want to thank you for everything you have done for me.

PDB: Please tell our readers a little bit about your book and why you wrote it.

MF: My book is called Alzheimer’s A Caretakers Journal. This book is about taking care of my father-in-law, whom I loved very much, with this terrible disease and how it changed our lives. After he passed away I saw the way my husband and my children reacted to this experience, and I decided I needed to write this book. I wanted to share this story to let everyone know that they are not alone. I wanted them to see that every one reacts differently to these situations, and that there is no wrong or right way. I wanted to share that when they get discouraged, not to beat themselves up. After all, they are only human.

PDB: What gave you the courage to get through each day, particularly as your father-in-law got progressively worse?

MF: First you would have had to know my father-in-law. He helped me and my husband grow up after we got married. I was 19 and my husband was 21. Even though at the time we thought we were adults, when I look back, we were still children. My father-in-law built us an apartment to live in the basement of his home, and charged us only $50.00 a month. Later on through the years, he was always there, like when we moved and he would help us pack and clean the house. Or when he would come to visit us out of state and help panel walls or fix porches. The biggest thing he had ever done for us, was when we were in trouble, he let us move in with him with all 5 small children. I never thought I would ever get to pay him back for all his kindness. I was on a mission to have him live as normal as a life as I could, just like he use to come and help us. Once I took on the job to take care of him, there was no way I would let anyone else do it. I wanted the job, and as he got worse I was more determined to take care of him.

PDB: You’ve learned a lot about Alzheimer’s through this ordeal, what are the top two or three things everyone should know about it?

MF: First: Try and remember their loved one as they once were. Not to judge or get too angry with them as their personality changes. After all, they cannot help it. They didn’t ask for this disease, and have no way to control it. Second: MOMENTS are important. As this disease progresses, you will need to grab on to the moments that are good between the two of you. It could be the way they say I LOVE YOU in the morning or the smile on their face when you give them that first cup of coffee. Cherish the moments. Third: I believe in prayer and some sort of exercise to help deal with the stress.

Well those are some of the things important to me, but you also need respite care. It is important to take care of yourself, so you can take care of your loved one. Plus, you need a good support group. You need to talk with others going through what you are going through so you can vent and learn new ideas on how to cope. And finally you need hospice in the final stages. They will help you finalize whatever it is you are to do. They will help you get through their death.

PDB: Your book is a journal documenting your days/weeks/months of care for your father-in-law, Joe. How did you go about doing this? What motivated you to do it?

MF: My journal started as a diary wanting to watch the changes, document the times, and prove that I could stop this disease. It just started as a day to day thing to do so I could look back at the changes, and see how fast they came about. It was surprising to see sometimes how fast he would digress in some things. Then it came as a mission just to see how much he changed in such a short time. I also kept my feelings recorded so I could see for myself how I reacted with each time he got worse. I kept my children’s actions recorded so I could remember how they acted when they were around him. I wanted to remember the good and the bad. I think it was my love for him that motivated me to record this. Sometimes I would be so ashamed at myself for how I acted. I wanted so bad to give him back the love that he gave to me.

PDB: Have you always kept a journal? Were there other times in your life where writing served as a balancing point during stressful times?

MF: As I had my five children, I did real well at keeping a baby book for them. But I found I had to have more space to write in the book some of the memories we shared. So of course I added pages of writing and they will enjoy reading them, if I ever give them up. I am really a camera freak, and I have pictures of everything they did growing up. I did some writing, and made some short stories of some of the silly things they did, and have them hidden in my hope chest. When my son was told he had cancer, I took pictures and kept a journal for him. I put in his thoughts and our thoughts. I still have it and when he is cleared for three years, I will then give it to him.

PDB: What types of things have you done to heal and recover your own life—and that of your family- after coming through this painful and difficult trial?

MF: You first have to mourn. You have to deal with the guilt for how sometimes you didn’t treat them right. Then you have to ask them for forgiveness. You get the chance to recover your old life back, yet you feel like something is missing. I think I will always have a hurt on my heart for the loss of my father-in-law. Sometimes when I am swimming laps in the pool, I just talk to him. I know I will see him and my mother-in-law in heaven when I die.

PDB: How has going public with our story changed your life?

MF: I get the chance to meet and help people. I have been invited to support groups, to tell my story. I also listen to theirs. We all share tears and we all have something in common. We have a loved one that was taken away from us by that terrible monster called Alzheimer’s. I feel in a way that my father-in-law is still helping others, just like he has helped us. I treasure that.

PDB: What is on the horizon for you? Do you have any other books planned?

MF: I am trying to get my book out there more for others to read. There are a lot of books out there on this subject. I hope to get my book noticed, and help more families. And yes, I have written a manuscript about a young girl coming of age and finding love in the year 1968. The heroin is from a Christian home, but her parents are divorced, which was not heard of too much in that time. Life was so different then it is now, with no cell phones and black and white TV’s. I am now looking for a publisher, so who knows.

PDB: Is there anything else you’d like to add?

MF: Yes, if anyone out there has a loved one with Alzheimer’s, remember you are not alone. Whether you care for your loved one at home, or in a care facility, go find a support group, ask questions, and remember that you are human. You will go through all types of feelings of confusion, frustration, and even get angry. But you will also be blessed. Remember to the world you are but just one person, but to one that one person, you may be there world.