I fell to pieces last night … literally an unrecognizable, weepy being frozen in my bathroom. My husband heard my sobs over his ever-increasing TV volume and shoot ’em up Army movie, so I must have really let it all hang out. To his credit and excellent nature, he came to comfort me without saying a word, understanding the pain inflicted on this lovely family.
I always thought I was incredibly strong, but when the realization hits that you are helpless against a loved one’s disease, there is no pain quite like it.
My dad is battling Alzheimer’s and he is losing. I can see it now and the heartbreak is almost more than I can bear. He answers the door when the telephone rings, pushes buttons on the telephone to lower the volume on the TV, and just fell last week and broke his nose. There’s more, but I won’t bore you. Dad is still exceptionally conversational and cares for himself very well. He’ll talk on virtually any topic, but politics and gardening seem to be his favorites.
Recently, for what seemed like an eternity but only took a few seconds in reality, he forgot that I was his daughter. Then a moment later, he caught himself. That is the first time that ever happened. I somehow managed to keep a poker face only through the grace of God, I’m sure, then managed to walk out to my car where I promptly called my brother and let it all hang out again.
I am not complaining. I am hurting. I hurt for dad who never deserved this horrid affliction. I hurt for him because he is in the stage where he knows something is amiss; it seems like a hellish limbo to me. Truth be known, I hurt for all the people out there that have this disease, and for all of us that are dealing with it on a daily basis. “It must be the work of the devil,” I told my husband. “He must be in such a lonely place.”
On the one hand, I praise the doctors for knowing as much as they do and helping as much as they can. On the other hand, I curse them because they don’t know enough. My mom made her exit from life rapidly, and I am seeing what a blessing that was.
As with anything negative, it is the wise who will turn it into something positive. Because of this life experience, I can now add another dimension to my work as The Estate Lady: assisting my clients who are also dealing with this same issue. I can most definitely relate, and now I can comfort them too. It has long been said that in comforting others, you also will be comforted. I certainly hope so. I feel another book coming on. I’m open to title suggestions ….
© 2012 Julie Hall
9 thoughts on “This Part of Life Doesn’t Come With An Instruction Manual”
First – let me send you a warm virtual hug! I’m so sorry you are going through this, that your Dad is going through this – that you are all going through this! Yes, this will make you stronger and it will undoubtedly help you help the families you so lovingly serve. In the meantime, know that you are not alone and I’m sending you lots of love!
I would like to share this with my readers Julie. I’d like them to read that they are not alone and that there struggles through this maze of dementia is one that is challenging and very hard.
Thanks for sharing this with us. You are an amazing woman and your Dad is lucky to have you in his life!
Thank you for your kind words, Pierrette. They mean the world to me. I will be in touch about an Alzheimer’s blog I am thinking about writing for just those sharing purposes.
Oh Julie! I am so sorry for what you are going through! I dread the thought of going through that with a loved one.
I’m so sorry about the thought of losing your remaining parent. I have buried 3 sets of parents and it never got any easier. I suggest a name for your book “After the Tears” because when all the weeping is done we are the ones that still have to deal with the details…and we do. I’ll keep you in my prayers.
Thank you for your compassion, prayers and title suggestion!
Did you see this last week? You might want to look into it. I’m sorry that you are having to go thru this.
I have two suggestions to share with you. You can find out more about them through the two web links below.
My father died at age 91 at the end of April 2012. During the last two years my experience was often much like what you are going through now. I am sorry you and your father are suffering. As you care for him please allow yourself to have plenty of time, attention, respite, and support from others. My father and I were also able to enjoy many moments during that time together. It was hard work, but it was worth the effort.
1. Communication and cooperation with care were sometimes very frustrating for my Dad, and the rest of us. This was the most helpful book I read, to understand what was going on, and to grasp how to respond in positive and effective ways. It contains wonderful advice about working with the resilience of memories that are associated with powerful emotions, favorite music, and art.
I’m Still Here, by John Zeisel, Ph. D.
2. This is a good program about how music helps people with dementia, and their caregivers.
April 18, 2012 – All Things Considered – For Elders With Dementia, Musical Awakenings
This links to two options: you can either read the written transcript of the broadcast, or you can listen to it as audio recording (8 min. 19 sec.).
And do also scroll down the body of the transcript to click on and view the accompanying video called, “So He Gave Me These Sounds” (6 min. 30 sec.)
Thank you for your suggestions; I will certainly look into them. I am so sorry for your loss. Your words of encouragement and “it was worth the effort” were exactly what I needed to hear.
Dear Julie, These words touch my heart. My Father lost his battle to Parkinson’s and Alzheimer’s in Dec. 2011. I was his primary caregiver for 7 and 1/2 years. I learned to love him as much as I could at what ever point he was at that time. Treasure each day, however long they may seem, because when they are over they can’t be retrieved. Each emotion you described were exactly ones I remember, the unfairness know me once or twice. Lots of humor helps, and looking at it as a battlefield that you can help him navigate gives a caregiver a sense of purpose. I also totally agree with the anguish the patient feels when they know something is wrong and can’t understand what. Love and support is the key to getting through this. Prayers for you and your Dad. I will always be, my Dad’s daughter