Meet Karen Garner:
I am a 43-year-old Mom of two and I have been married to a wonderful, smart, loving and steady man for almost 16 years. Oh yeah, and he is a handsome man too.
I started this blog with the backing and encouragement of friends and family. It was a tiny seed in my mind but really only came about with full on props and help from some pretty awesome people. I can never re-pay them for the depth of support they have shown to me and continue to show me daily.
My friend and lover and the father of our children has Younger Onset Alzheimer’s Disease. That is a mouthful. It is also a life full. A life full of hopes dashed. A life full of new beginnings. A life full of learning patience and accepting what life throws at you and realizing the universe laughs at you every time you think that you control your own destiny.
I write this blog for many reasons. The first and foremost is to share our story in the hope that someone, maybe you, will read my words and feel compelled to do something. To donate money, time or services to an organization like the Alzheimer’s Association or maybe a smaller one in your local area that helps families facing this long journey.
I write this blog to share our story with friends because I am asked every week how Jim is and how I am and how the kids are and how do I do it? I don’t really feel different or special, but I know that I am in a situation that is unique and at times unfathomable.
I also write and cry and reveal our voyage through this journey so openly because I know I am not alone. I know there are tons of others in this world that are going through similar situations. I speak out for them. For those that don’t have a voice or at this point just aren’t able to share their tale. I speak for you. For all of us. This is more than forgetting where you place the keys. This affects relationships, finances, emotions, lives. It is all consuming. It is my hope that with an understanding of what life is like in an Alzheimer’s home, a change will come about.
Patience is Indeed a Virtue Patience
How I wish to the heavens above I were a more patient person. Unfortunately, all of my life I have struggled with this very thing. I distinctly recall as a young girl my Father talking to me about being patient and learning to relax. Many years later he is still telling me these same things. It seems such a cruel joke for me, of all people, to be put into a position where each day brings a new level of need that I could never have foreseen. When you are a mother, a full time employee and a care partner to someone with Alzheimer’s Disease, patience seems to always be flittering just out of reach.
I somehow find the patience to deal with work, although there are times I can tell I am not quite as tolerant as I used to be. I have patience to deal with the person who just cut me off while driving. Or the call center person that answers when I call for the 3rd time about a bill that is incorrect. I have patience for the person talking loudly on their cell phone next to me in a restaurant. Somehow I manage to tolerate a rude server or incompetent customer service rep.
Where I seem to be lacking in patience: a combination of two kids and a husband that sometimes makes me feel like I have a 3rd kid. The people I love the most are the very people that will bring out the utter lack of restraint I possess. By the time I get through my workday, I am sometimes on the cusp of a meltdown. Then to find out one of the kids forgot their homework or that Jim didn’t check to see if Brad had homework and instead stayed at the park way too long so we are now rushing to get something to eat and out the door to practice or piano and homework and reading will have to wait. Homework comes first, right? Or when someone finishes up the bread, milk, bagels, cereal, fruit, etc. during the day and doesn’t mention it to me so I can pick it up on the way home. I find out we are out of something the next morning when it isn’t there to fix for breakfast or to make for lunches.
If I only had to deal with one area of my life that needed patience, maybe that would work. But it seems that I am constantly needing to use every ounce of tolerance I possess and search within me for any reserves. Sometimes there isn’t any to be found.
Then the guilt comes. Although I am getting better about the guilt, I see it as a gift to keep me in check and to encourage me to be the calm I want to see in the world. Especially my own world.
Those of you that read my words who have traveled this path will certainly understand and probably relate. Those of you reading my words without a personal experience living with someone with Alzheimer’s Disease will hopefully become more educated and garner a better understanding.
In the past two weeks I have: walked in the door to find that Jim has taken ALL of the fire alarms down and laid them out on our bar in an attempt to find the one that was beeping (he even grabbed the one out of the attic); found my treasured “Life Is Good” mug hiding above the dryer with a huge chip missing after Jim had told me weeks ago he had broken it and thrown the pieces in the trash outside; had to reprimand Brad for disrespecting his father and taking advantage of our situation, while Jim was standing there aloofly listening; discovered Jim sleeping with his jacket on in our bed with two quilts and a blanket also covering him; found an overflowing basket of wet clothes sitting outside and Jim not recalling when he took them out there; asked Jim to keep an eye on the heat pump I had just turned on for the winter to make sure the water was flowing through the radiator pipes, upon returning a few hours later from softball practice I realized the heat had not come on, Jim had completely forgotten and the house was freezing. I have witnessed a slight decline in Jim over the past few weeks that starts the heartbreak train and the emotional inner-turmoil churning. Yes, you can know that someone is going to get worse and read all the books and speak to all the specialists. But it cannot prepare you to be a bystander as it unfolds in realtime.
By sharing these stories I am not putting Jim down or trying to have anyone feel sorry for me. I think it is important for everyone to understand that having Alzheimer’s Disease is just that; A DISEASE. There is nothing to be ashamed of. It is more than forgetting who someone is or getting lost. It is a frustrating life that can wear even the strongest person down.
The REAL irony and truly sad part is Jim is probably THE most patient person on this Earth. If the roles were reversed, I cannot imagine him not being patient and understanding. He always has been, even now. He doesn’t get mad and angry and just accepts what comes as it comes. He continues to teach me so much and is helping me grow into a person that is so much better and stronger than ever before.
The next time you see someone in the store, or driving down the road or in a restaurant and they snap for something that doesn’t seem like that big a deal, please stop and remember you don’t know the fifty things that happened before that moment they had dealt with. One minor thing can release the flood gates that have been held together by a wall of crumbling rocks.
See more at: Missing Jim:Confessions of an Alzheimer's Wife