Ever since I met Gary in 1985, I have been focused on my career. We started together selling campground memberships/timeshare and later, oil wells. We were incredibly successful with Network Marketing. I worked as an Admissions Advisor, Director of Admissions, Corporate Director of Admissions, Associate Director, Campus President, Provost and now Executive Director. I like to think that all were promotions or a better place.
Until about seven years ago, Gary was my husband, mentor and teacher. He taught me about sales, reinforced integrity, and taught me how to think critically in every situation. I am a free spirit by nature so learning the skill of using my left brain was often tough. He hung in there and eventually, I became an Executive. While he was proud of me, he also hated that in the latter years I had surpassed his success.
When it comes to Gary, I am not sure what came first, his failure or his Dementia. He started projects that were never finished. Was it boredom or was he hiding a weakness in his thinking?
I remember vividly coming home from my former College one day when I was facing a particularly difficult day of downsizing. We were so close as a work family that it was devastating to know that I had to ask someone to leave. I asked for advice from Gary. He looked me squarely in the eye and said, "Honey, I don't know what to tell you. I have nothing left to teach you.....you learned all I have to teach and you are better than me."
On one hand I was thrilled and at the same time crushed. While I watched him pour himself a triple whiskey and coke, I made a decision. He often begged me to quit my job and stay home to work with him. I decided that no matter what, I had to continue with my success because someday I may need to be the strong one. In retrospect, my wisdom then surpassed my situation. I had no concept then of what I would be facing with his dementia that was to come.
If you have never had to decide between work and family, I hope you never do. I was challenged with learning to balance the 50+ hour job and taking care of things at home. Even when Gary was still working, I spent weekends managing the books, troubleshooting the computers, marketing the current product or designing a campaign of some sort. We worked hard and we played hard.
I remember many nights coming home from work after a long day and spending 5-6 more hours in the office. We made a lot of money. We lost just as much as Gary started failing and took over the business as I focused on my job.
Before we moved from Elk Grove, there were times when I would have a crisis at work and would call him to say I would be late. The situation was always the same. I would ask if he could feed Diva (our beagle) and start dinner until I got home. Many times he did and many times I would find him at the computer having not eaten nor started anything.
When our accountant told us to short sale our house due to the price being nearly $300k under what we owed, I really started seeing his problems. He could not make decisions without significant input. He had hired a team to raise enough money to build a Dementia Care facility. He would drive around Elk Grove to find an appropriate tract and call the same broker he had called three times before never remembering that he had.
All the while, I was running a college and doing the best I could. Is that an excuse? Maybe, maybe not.
Now, seven years later, Gary is never to be alone for fear of him falling, burning the house with the stove or walking out to never return. He goes to day care five days per week and must have a caregiver at all times until I come home.
Due to my years of compartmentalizing home and work, I can focus on work while at work. In fact, having to escape thinking of him has made me a stronger Director. I immerse myself in Profit and Loss Statements, team building and providing a quality education to the near 1600+ students who are working on their B .S. degrees.
While at home, I must focus on him. I must start to plan for the future. How will I afford the long term care that he is going to need? I need to remember to tell the agency what days I will need someone late because I have a ceremony or dinner, etc. I cannot afford to miss a beat in either role.
Sometimes it is like having a split personality. I don't have that affliction but could function well if I needed to do so.
I know people mean well, but frankly, I am very tired of hearing how strong I am. I don't want to be strong. I don't want to be tested anymore.
Don't misunderstand. I am thankful that God has given me the strength to endure what we are going through as a family. I am eternally grateful. But, I am still human and I am sad, tired, grieving and still expected to rise each morning and perform at peak levels in life and work. That is very hard to do....day after day.
I do believe in self-fulfilling prophecy, so it messes with me that I just said that I don't want to be strong. That means that if I keep saying it....then I will lose that strength. I certainly can't do that to myself. Dammit.
So, here I am. 52 years old with a 67 year old husband with Dementia. Why? I know the reasons.....there is nothing I can do about it. That pisses me off. If my language offends, well, I am sorry. Sometimes, I just have to be honest about it all. I hate it.
Yep, hate is a strong word. I love Gary. I hate the situation. But, everyday I have to dig deep, move forward and draw on every ounce of faith that I have. God has put me in this situation for a reason. He either has a huge purpose for me or an intense sense of humor.
"I can do all things through Christ who strengthens me...." Yes, Ada. Keep telling yourself that quote.....just keep saying it.
What a weekend!
Around the middle of last week, Gary started complaining that his right leg/hip was hurting. Getting in and out of the cars was painful for him, in fact, often coupled with screams of "ouch"! By Thursday evening, he was complaining bitterly and it appeared to be more than just a slight pain. On Friday, I called our new Primary Care Physician's office to make an appointment for him to go in. Since our insurance became valid on 10/1, it was nice to know we are covered. We had just received our cards and I looked at Gary's for the first time. there was a name of his primary care physician, but no phone number nor address.
So, I logged on to the Aetna website and attempted to log in. Of course, it was a log in where I could not use my normal log in and password due to syntax...so, I had forgotten the log in info. After going through a series of "forgot login" and "forgot password" agony, I finally accessed the proper log in for Gary. After retrieving the phone number and address, I called for an appointment. Upon telling the operator that I was a new patient and that I was calling to make an appointment with Dr. XX, she promptly said, "there must be some mistake. He is not taking new patients and is retiring. You will need to call your insurance and have a new primary care physician assigned and then we can make an appointment." I asked for the names of other physicians in the same practice and ensured they were accepting new patients.
I logged back on to the website and changed the physician. I called back to the practice and was told that there were no appointments available that day and that if we wanted to come to urgent care, they work with no appointment. Bingo! I wrote down the hours of the Urgent Care and decided I would take Gary on Saturday morning.
Later that afternoon, I was still at work around 5 when Heather texted me that Gary had gotten worse and he struggled getting into the massage chair and fallen back into the chair but was not injured further. I made the decision to take him to urgent care that night.
I drove home, picked up Gary and headed to Urgent Care. After filling out mounds of paperwork while Gary sat in the waiting room reading aloud all the signs out the window, he was ready to be seen. The medical assistant gave me a couple of "you poor things" before we saw the doctor. Gary is very sweet but very irritating. Several times during the check in, sitting in the waiting room, going to the bathroom and changing clothes to see the doctor, he yelled out of pain when he moved the wrong way. The nurse cringed at his volume.
Once the doctor joined us, she realized she was dealing with a patient who repeats everything he hears. So, every time she said, "Does this hurt?" He responded with a parrot like phrase. With my help, she moved his body into 50 different contortions and he did not express pain once. He lunged, squatted, bent at the knees, etc. She deduced that he did not have any broken bones and that he had a muscle-skeletal thing.....said to give him ice and heat for 20 minutes each and take anti-inflammatory.
Saturday came and went with several rounds of heat and ice. It basically did no good. Every time he needed to get up to pee, poop or move, he needed help. He yells in pain but I didn't want to take him to emergency to only be referred to a Primary Care Physician, so I decided to call Monday morning and report increased pain and demand an appointment.
I decided not to even try to go to church on Sunday. We stayed home all day and I assisted him in walking anytime he needed to move. He forgot everytime that he would be experiencing pain when he moved, so I had to watch his every move.
I know in my heart that this weekend was a precursor and a preview for what is to come. I get angry and sad within seconds of each other. I rage when I have to repeat myself more than four times...sometimes three. I am not good at being a caregiver no matter how hard I try. Gary thanks me frequently and tells me how thankful he is that I am here and tells me how sweet I am. I feel so guilty because me feelings are quite different. I just want to run away but know that I cannot do that. I feel so alone.
I want my old life back. I want to be carefree and go see a movie, get my hair done, go out for dinner and take a vacation. I want my husband back....I miss our old business conversations. I miss his tender touch. I miss my lifemate. The guy that is here is mostly needy. While I still love him, it is very difficult.
Only God knows the plan.
