Wednesday, October 29, 2008

The Beginning of my Mother's Journey Into Her Illnesses

Today I stumbled across an old personal file of mine and while looking through it I found this 4 page letter typed by mom. She gave my sister and me each our own copy with a little note attached that reads "Anne-this copy is for you-I love you". To this day it is bittersweet to read. I don't remember exactly when I received this letter and I believe I have only read it one other time other than today. I'm pretty certain it was sometime around 1995-1998.
Here is the letter (written by mom)...

My journey with heart disease started back in 1979. It has been a rough trip but I feel I have learned so much about myself, life, and living with chronic illness.

I was forty-one years old when I was diagnosed with Coronary Artery Disease. I had asked doctors for a number of years why I was having chest pain and felt so tired most of the time. The thinking in the 1970's was that premenopausal women did not have heart disease. Although I had a very strong family history of heart disease, I was told it was "nerves", "depression", or "young housewife's battle fatigue". Then I would be given a prescription for a tranquilizer, told not to let stress get to me, and sent home. I even went to my parent's cardiologist and was told there were irregularities on my EKG but that I was probably stressed out and sent home - two different times!

Finally, I saw a doctor who I did not tell about my chest pain. I told of my fatigue and the general sense of not feeling well. She asked me to agree to go to the hospital for testing. She felt there was more than fatigue going on. The second night in the hospital, I called the nurse and told her I was having chest pain. The nurse took my blood pressure, asked me some questions and left the room. Shortly she returned with a small bottle of nitroglycerin. When I saw that, it made me angry for I knew what it was and why it was used. She had me place one tablet under my tongue. It worked! Then I was really upset for I knew I was in trouble. Shortly after that, my doctor appeared at my bedside. The time was after midnight but the nurse had called for her to come. The next morning I met the first cardiologist who would be taking care of me.

Three days later, I had my first Coronary Artery Bypass surgery. That was March, 1979. After surgery, I did not seem to be improved. Three months later in July, 1979, the Bypass surgery was repeated. The prognosis given at that time was poor. I was devastated. Our two daughters were in middle and high school. We were told I probably would not live to see either of them graduate from high school. How could this happen to us!

Hal, my husband, called in a psychiatrist to talk to me. I cried a lot and felt so completely hopeless. The psychiatrist encouraged me to take it one day at a time and strive to make it to the next day. Then I would tackle the next day in the same fashion. He helped me to deal with my death and my living. To this day I still work on the premise of one day at a time. I do plan for events knowing that the plans may have to change, but I have learned to be very flexible.

I also was so afraid of dying alone. The doctor taught me to realize that dying was something everyone did alone - even if the room was filled with people. He helped me lose my fear of death and I find I seldom give it much of my thought. I put my energies into living today.

The future that we were told to expect was short and very gloomy. Hal and I agreed and told our doctor to have my chart in the hospital marked "No Code". We just felt that life was over for me. One night I was having a very bad night in Coronary Care. I asked the nurse to call Hal and ask him to come to my side. I felt that I was going to die that night. I wanted Hal to come into my room and be with me. When he came, I asked him to hold my hand. I felt that as long as I held on to his hand I would not die. We held hands for several hours and finally I felt that sense of crisis leave me. I told Hal he should go on home to get some rest. As he got near the door I asked him to tell the nurses "Don't be too quick on the No Code". We have laughed over the years about this incident. We decided early on in this journey that humor was necessary to pull us through. We try to find some humor in all situations. It is difficult sometimes but if you look hard enough you can usually find something to laugh about.

Recently I was in the emergency room with severe angina. It seemed that another heart attack was in progress. There was a woman from housekeeping moving around the area doing her job. Each time she passed my bed she would look over and say, "You feeling any better honey?" and each time I had to say "No". The third time she passed by my bed she asked the question again. My answer was the same as before "No". She said, "You don't look so good neither". Hal and I looked at each other - we had found our humor for the evening. It did break the tension for a moment.

The first four years after my diagnosis I was in the hospital more than I was at home. It was a very difficult time for our family to survive. We did a lot of reading in our search for information and help. We did have some counseling for our daughters and ourselves.

I had been a smoker before the first By-pass surgery. My doctor and my husband collected my cigarettes and lighter the day I was told that I would be having surgery. The respiratory therapist followed right behind them into my room. We worked for the next three days to try to clear my lungs so that I would be in better condition for surgery. After the surgery, I felt so very bad that smoking did not even occur to me. By the time the second By-pass surgery in July 1979 was past, the thought of smoking just was out of the question. I had been through too much already and the thought of smoking again was an anathema.

I was enrolled in Cardiac Rehab after surgery. Each time I did not continue to exercise on a regular basis after finishing the course of rehab. I did change my diet and the way I cooked. I have learned over the years to create interesting and flavorful dishes based on the low-fat way of cooking. Low-fat cooking does not mean unattractive or bland.

Through the 1980's my condition fluctuated between not good and poor. I was hospitalized numerous times. I had to have abdominal surgery twice, I had a pulmonary embolism, I had congestive heart failure problems. It was one thing after another.

Sometimes I would be so weak I needed a wheelchair, I needed a walker for I had a string of leg and foot fractures. The list seems endless.

My energy level was so poor I could function at only a very low level of activity. I was still having trouble with angina. I was sent to the hospital many times because I seemed to be having a heart attack. I became more and more depressed. I went to Mayo Clinic seeking help. Pain had become nearly constant in my chest, my back and in other areas of my body.

Over the years I have also been diagnosed as having Fibromyalgia, Osteoarthritis, Osteoporosis, Psoriasis, and Multiple Sclerosis. The diagnosis of MS came just about two years ago. I was started on Betaseron (Interferon beta-1b) in April of 1994. It has made a great change in my energy level and contributed to improving my overall sense of feeling better. The finding of MS has explained so many of the problems that have confounded the doctors who take care of me. And it has helped me to know that so many mysteries about my condition can be explained.

By the end of 1993 I felt so bad all the time and I could barely walk across a room. I was so worried and depressed about my situation. In early January, 1994, I was again taken by ambulance to the hospital. Another cardiac catherization was done. The idea was to do the cath and then try another angioplasty. I had had a number of catherizations over the years and two angioplasties. At the time of the cath I had a heart attack and was taken to surgery. That was my third Coronary Artery Bypass surgery. To quote the cardiologist, "The recovery in the hospital was stormy". In recovery I went into cardiac arrest. From my point of view it was the worst experience of my life.

I had been having trouble with my vision for a year or more before 1994. I was having holes in what I was seeing, and in other ways my vision was distorted. The doctors thought I was having small strokes. After my third bypass surgery the problem continued to worsen. One morning in the Spring of 1995 I awoke and could not see and could not remember much. I finally was able to remember how to call one of my daughters. I found I could barely talk. I did get her to understand it was me and that I needed help. She came and called for an ambulance. There was another trip to the hospital. At first they thought I had had a stroke again. Further testing finally showed Multiple Sclerosis. The previous "strokes" turned out to be exacerbations of the MS. My vision was so disturbed I was seeing double. I wore an eye patch and could not drive and could barely read. This continued until I had been taking medication for the MS for months. Gradually my vision has improved to where I no longer need the eye patch and I can drive in the day time. My night vision is really not good.

I started another course of Cardiac Rehab after the surgery in January 1994. I have stayed with it this time. The idea that I am expected makes me keep my commitment to my exercise program. I tell everyone it keeps me honest. Since 1994 I have lost over fifty pounds. I have gone from a dress size of 18 or 20 to a size 10 or 12. I am so very proud of myself and how I look and feel. The weight is off and I am toning up the body. I feel better than I ever have most of my adult life. Someday I may even be crowned the Cardiac Rehab Poster Lady!

I have just briefly mention dealing with depression. It is something that at different times I have both dealt with and have denied its presence. It is very difficult to deal with chronic illness, pain, uncertainty created by both, and facing your own mortality. The work needed to create new ways of thinking about life and who you are requires time. It takes a lot of energy, both mental and physical. I have read many books and articles searching for answers and comfort. I have found a psychiatrist who has been a great help over the last number of years. He has helped me to know that adversity comes to all of us but how we diced to feel about it is most important. We cannot control all things that happen to us in our lives. We can control our feelings. Many times I have cried and been devastated by bad things that have come into my life. I let myself have a few tears, and "why me's", but then I must turn my thinking around. I must start to concentrate on thinking "Well, how am I going to cope with this?". I gather information to study and learn about the problem. You cannot cope with or deal with a problem without information. The next step is to take the gathered information and apply it to the problem and how it all relates to me. Next "How can I use this knowledge to help me live each moment in a way that will make me the most comfortable and happy." The major understanding that I feel I have gained is to live each moment to the fullest and to accept it as a gift. The freedom that that way of living and thinking gives you is limited only by your willingness to believe that this is so.

Our daughters are grown and out on their own now. We are grandparents. We are looking forward to retirement soon. I am so filled with wonder and joy to find I have made it almost twenty more years. I know I cannot make all my problems go away. But I can accept each day as a gift and a challenge. And there must be humor in there somewhere.

Marilyn B. Forrester

Thursday, August 14, 2008

On the rebound once again!

Since I wrote that post (Could this be the beginning of the end?) Mom seems to be rebounding back as she usually does. Dad said he has been taking her to movies which is something they both really love to do together. She may not always remember what she saw but for those brief two hours they can sit quietly, hold hands, and really enjoy being together.

Dad said they watched Randy Pausch's Last Lecture video and he is reading the book to Mom. They have been discussing with Moms doctor (upon the doctors request) to write and speak about Moms nearly life long illnesses. The Last Lecture video is inspiring them to do this project, follow the same format as Randy. I think it will be so beneficial to Mom, it will give her a 'purpose' once again and a way to release all of the stress and sadness that has built up inside of her for the past 30 years. She will also be able to help inspire others with her will to defy the odds, her will to live and live a full live with a purpose and happiness among the stress and sadness. I really hope they follow through to begin and complete this project.

So... here we are again on the fast downhill of the emotional roller coaster of our lives.

I love you Mom!

Monday, August 11, 2008

Three generations of Forrester Women


L to R: my daughter Emma Balcom, my sisters daughter Lyndsey Estes, ME Anne Balcom, my sister Camille Estes, Mom Marilyn Forrester

This picture was taken at my sons 5th birthday party on August 9, 2008
Can you see my son who "photo-bombed" this picture?  Hint: Darth Vadar

Friday, August 1, 2008

Could this be the beginning of the end?

Well... here I sit at my computer feeling many different emotions today. At this moment: hate, resentment, sadness and sorrow, worry, hope and guilt, stress, nervousness and fear.

HATE: coronary artery disease, multiple sclerosis (MS), diabetes, an inoperable leaking heart valve which is stealing Moms energy and strength, dementia brought on by her MS which is stealing the only thing my mom has left... her memory, all of her memories.

RESENTMENT: I resent the illness(es) that took our mother away from us at an early age. I resent the illness(es) that took our fathers wife away so early in their lives together. Mom got sick in her late 30's and was not to live to be 42. I was only about 10 or 11 when Camille and I were told we needed to prepare for her death. I resent that I had to face living without a mom to carry us through puberty, to see us graduate high school & college, to see us marry, and to meet her future grandchildren. All of that is so difficult and frightening at such a young age. I resent that my sister at the age of 13 or 14 had to become the woman of the house, she had to grow up too fast to help my dad take care of me, too plan and cook our meals so dad could work. I resent we had to have hospice come to our home to prepare for moms death. Our first emotional roller coaster. We were so lucky that Mom pulled through, beat the odds and lived to see her 42nd birthday and beyond. She wasn't supposed to but she did. She made it through her first open heart double bypass surgery. Little did we know the worst was yet to come and it would all span over 30+ years... more emotional roller coasters.

SADNESS AND SORROW: Mom didn't get to live the life she wanted to live. Over seas travel was taken away. Raising her two daughters the way she wanted was taken away. Fear of losing the battle was always in sight. So sad for Mom for all that she has had to endure, all that she had to give up, all that she has had to suffer through to make it to where she is now, to have all of her memories eaten away. It's so sad and so difficult to watch. I don't cry about it much anymore, it's part of our everyday life.

WORRY: Is it almost over? I worry for my dad, the toll it has taken on him to see his wife suffer for so long. The effect it has taken on his physical being, his spiritual being. Having to live with the constant worry of "is today going to be the day?"... always looming in the cellar of his mind (and ours too).

HOPE AND GUILT: Hoping that it will be over soon, the suffering. The guilt for having that hope... I don't want Mom to die but I want her suffering to end, I want our suffering to end (more guilt for feeling this way). I don't know if there is a "happier place" that everyone talks about... a place where families are joined together after many years of being apart. If there is such a place I can only hope that Mom will find her mom and dad, that they are waiting for her with open, protective, loving arms. I know Mom would love to feel them again.

STRESS: This comes from everything I've mentioned. It wreaks havoc on my physical being.

NERVOUSNESS AND FEAR: I'm afraid of what it will be like to have to live without my mother in my life. I don't want to have the experience of hearing for the first time that Mom is gone, I don't want to have the experience of picking up the phone to call her then remember she's no longer there. I don't want to feel that profound sadness that I've heard is felt when a parent dies. I don't want to have to face visitors with a strong, brave face. I don't want to have to hear "at least she isn't suffering any longer". I'm afraid of what will happen to my dad. I don't want to have to try to comfort him that his wife is gone. I don't want to have to tell him everything will be okay. I don't want dad to have to face visitors with a strong, brave face. I don't want to see the devastation and sadness in Dads eyes.

Fortunately not all was bad though. For a few years Mom was able to go back to work in real estate, she was able to travel as far west as California, as far north as Alaska, and as far south as the Panama Canal. Mom has two sisters who have given her so much help and have been so supportive, Mom has lots of loving, caring friends who kept her busy, took her shopping for pretty clothes, made sure she had lots of laughs. Mom lived to see Camille and me graduate high school and college, she lived to see Camille and me get married, and she lived to meet her grandchildren (all 4 of them). She lived to enjoy many years with her husband whom she loves like no other, and she is so fortunate to have a husband who has undying, unconditional love for her.

My sister, Camille, called me yesterday afternoon (7/31) to ask if I had talked to Dad. Dad told Camille that Mom has gotten to the point where she sleeps a good portion of the day away and has for a while. This I knew and it had occurred to me already that this may be a symptom of an end in sight. Dad and Mom met David, me, and our kids out for dinner last night. For the first time in the 11 years that he has known my mom David could tell that she was not well. She is very frail and unsteady. Mom is currently in heart failure and is retaining a lot of fluid. She has fluid build-up around her lungs which is making it difficult and painful to breath - pleurisy I guess. At the dinner table Dad leaned over to me and whispered that we should spend as much time with her as possible. So... here we are in another emotional roller coaster. Moms track record is to come back from the brink, when all of us including her doctors are certain it's the end. Part of me hopes this is one of those times when she will come back strong, then part of me hopes she will just fall asleep peacefully and hopefully, reunite with her parents(again the guilt).

Thursday, July 31, 2008

"You Just Have to Decide if You're a Tigger or an Eeyore."

Randy Pausch was an inspiration to my husband, David, and me and we were both so sad to learn of his death when we returned from our vacation. If you haven't watched his Last Lecture video I urge you to do so, it is humorous and bittersweet. You will laugh and you will cry but it is truly amazing. This video is about 1 hour and 15 minutes but it just may change your life, it's worth watching.

"You Just Have to Decide if You're a Tigger or an Eeyore." This is a quote from Dr. Randy Pausch and I love it.

Tuesday, June 17, 2008

Insanity at its funniest - thank you cicada's!

This post has nothing to do with my mother or dementia but I had to post it because, I think, it is hilarious...

Over the past month we have been, literally, invaded by those icky 17 year cicada's in our neighborhood. The invasion has been so bad that our kids are afraid to play outside. You haven't been able to be outside without one of them flying into your hair or landing on you... anywhere!

Here is what happened to me today (June 7, 2008):

I just got back from running a couple of errands with the kids to get pinata stuffers for Emmas birthday pinata. We pulled in the driveway and there was not one cicada sound after nearly 4 weeks of being driven insane by the sound of those damn bugs, and I pointed out to the kids how quiet it was.

We three brought in the things we bought... I went to go pee and while standing at the sink washing my hands I heard it... the tell tale cicada screetch... IT was IN THE BATHROOM WITH ME... somewhere in there!

I turned to look behind me in the mirror and I saw it on my back. THE HORROR!!!! I flew out of the bathroom, running and screaming as loudly as I could "CICADA ON MY BACK!!!" sprinting out of our bedroom, down the hallway and out the front door spinning in circles and shaking my shirt as I'm still screaming that there is a cicada on my back. I'm sure the neighbors got a kick out of seeing me in action. The kids didn't know what to think about me.

Most recent issue

Dad called me on the morning of June 3 with some worries about Mom. Some things are too personal to type in my blog and to keep my mothers dignity in tact I won't mention them here. One disturbing thing my dad mentioned was that in the middle of the night he woke up hearing my mom calling for help from their living room. When Dad found her she was standing there with no idea where she was. She had been in the kitchen earlier trying to make something with blueberries and had juice and other food strewn all over the kitchen counters... a huge mess.

My poor father is her primary care giver and while my sister and I help out as much as we can, he is the one to bear the burden. Camille and I see him slipping deeper into depression and we don't know what to do.

Friday, May 30, 2008

I'm still here

I'm back... just a quick note to let those of you who read this blog know that I'm still alive... just haven't had much to post nor have I really felt like posting anything. Here is a recent picture of me with the folks over Memorial Day weekend (Saturday May 24) that David took with his new camera.

Sunday, March 9, 2008

You may have noticed a small change

So you may have noticed (or maybe not) a small change in my page header describing my blog. I have taken the word Alzheimer's disease out of the description because my mother HATES that word. She's not too fond of dementia either so she came up with her own name for her memory loss. CRS is now what we will call this disease that is robbing my mother of her memories but, as you will read, NOT her sense of humor. CRS stands for Can't Remember Shit... this coming from the woman who has it (but doesn't always remember it).

Love you Mom! You make me smile.

Tuesday, February 26, 2008

Edelson test results and catching up

So... Mom had the Edelson test done. Apparently this is a test to help determine if the patient has declining memory... or something like that. I need to Google this to research it more. The results came back and it was determined that Mom's memory problems are a result of her MS - NOT Alzheimer's. MS or not... in my opinion, she still has a dementia. Just two days ago she called me about an expiration date on a can of soup... the date was Aug. 2009. She had to ask me if that meant that the soup was no longer good to eat NOW (2/23/08 I think). I had to tell her she had a year and a half before the soup was no longer good.

This morning (2/26/08) I was awoken to a 6:15 am phone call from my Dad telling me that Mom was in an ambulance on her way to the hospital with severe chest pains and sweats. How can this happen when she has a heart defibrillator implanted in her chest?

I'm too tired to type more. I'll come back to type more later... maybe.


Tuesday, January 8, 2008

The Reality of alzheimer's Strikes Again!

Last week, Thursday I believe, my parents flew out to Kansas City for a funeral of a close friend of theirs. Upon their return to Louisville on Sunday evening (1/6) Mom called to let me know they got home safely. She described their trip, how the funeral was, who they met, and so on. Before we hung up she told me how exhausted she was from the flight and that she was going to bed. I guess our conversation lasted about a total of 5 minutes.

I hung up the phone after saying good-bye to her, sat down on the sofa with David to finish watching our show. About 5-8 minutes later the phone rang again. It was Mom again, calling to tell me that she and Dad were back home from Kansas... giving me all of the exact same information as if we hadn't just spoken 5 minutes earlier. She had no recollection of calling me the first time. I continued the conversation with her, not letting her know of her prior phone call. I couldn't believe what was happening. It was as if someone pushed a rewind button. I have to say I was stunned. I looked at David in disbelief when I hung up the phone for the second time.

Guess I got knocked in the head with the reality of alzheimer's.