Marking time

I decided to cut back on my photography business.

My wife has Alzheimer’s and I’m her caregiver. It is a terrible, terrible disease; probably the worst I have ever come in contact with first hand. Yes, cancer is terrible too and yes, I have lost loved ones to it but Alzheimer’s is different and that difference makes it appear less deadly, even though it is not. Alzheimer’s works over time, slowly at first but builds like a freight train rolling at you. It slowly dissolves the mind, reducing a capable, intelligent human being into a shell of a person robbing them of dignity, grace, compassion and life over time. Cancer by contrast suddenly appears, rears it’s head, laughs at treatments and sometimes moves on. People do beat cancer. Alzheimer’s is more like torture, it eats your brain alive. You don’t escape. There is no hope. No one gets out alive.

I started my photography business after a career in the software industry. I opened the door to my studio in February 2013 expecting business to build over time. I had figured that within six months I could be actually putting a bit of money away and wondered how many assistants I would have within a few years. Seriously. But wow. I was in for a lesson. I struggled but my wife was by my side, working at her job and giving me that always needed shot of confidence to keep going. I worked 7 days a week. I worked all the time either behind the camera or developing my media presence and networking like a mad man. By late 2013, I was still struggling and my wife had developed some issues as well. I noticed but she kept telling me to not worry, she was going to the doctor and things were going to work out. About this time, problems developed with my Mother. She is older, and in the developing stages of dementia and she needed care. Of course, I was still building my business during all this. My plate was full. In 2014, a diagnosis was presented to my wife. Early on set of Alzheimer’s. It wasn’t real noticeable then. She still drove her car. She still functioned well enough but she was on disability from her job and at home. She was plenty able to carry on normally. We talked and talked and she wanted me to keep up my business. She insisted. So I did.

For the next few years I noticed changes, very slowly and very minute. We traveled here and there, we were actually enjoying life as it were and based on my research, I was optimistic that we had a fair piece of time before the disease would become advanced and impact her life that much. We as humans, always want to be optimistic in these matters. I mean we both knew there was no running from the disease and that there is no cure and Alzheimer’s unfortunately is in her family, so she knew first hand what was coming. But she had only just turned 60, so we just lived on and made the best of it.

The medications provided are just meant to slow the disease. It can’t be treated. As it turns out the medications are more effective in some than others, and the way Alzheimer’s works, the meds may not be effective at all. No one really knows why. Even now, I feel her meds are more placebo than useful. By 2016 she wasn’t driving anymore. I was working less and spending more time with her. From there things progressed much more rapidly too. Far faster than I could have imagined.

Now, in early 2019 we are at a point where she needs me more. I cannot devote the amount of time needed anymore to run a photography business. I still own equipment. More than I need or want and will deal with that via sales and give-a-ways but I cannot take on work scheduled out for any period because I can’t honestly say I will be able to cover it. We sometimes can’t make scheduled dinner dates due to her behavior patterns which are ever changing and very rollercoaster like in nature. I cannot in good faith contract with a client knowing its at best a 50% chance of me being able to fulfill it. So today I announced that I am still in business but in a very limited operational state. My wife does not require 24/7 care yet, maybe more like 14/7 or 16/7 care since resting and sleep are her best friends right now. But even at rest she does need to be monitored so someone needs to be with her. I can arrange that but it really complicates me trying to schedule work anymore so while I am available to work, it would be very difficult to schedule it. I think I am at work more in my heart than in the physical.

My days are tough, but not as tough as hers. She knows, she is still very aware. She cries. She is quiet as she finds conversation difficult. Our being together for 47+ years has the benefit of knowing each other well enough that we can get by with gestures and minimal words. We hug a lot. Being with her and watching as she tries to still be herself is so hard. I have to retreat to my office at times to wipe away tears. I have never cried so much in my life but I cry for her. I have wished so many times, it was me in her place. She deserves so much better. She is and has been the most kind, caring person I have ever known. She has put up with me all these years, and believe me, if you know me then you know she is a candidate for sainthood. She was a provider for our family, retiring early from a Senior Management position in the IT field in an age when women in those roles was not commonplace. But her brains, common sense and unreal knack for organization coupled with her compassion for those she worked with made her standout. A lifetime of skills as a person, a Mother, a wife and a professional developed and honed to perfection and Alzheimer’s has wiped most of it out in five years.

If you have hung on to my words so far, thank you. Don’t feel sorry for my wife, Irene. She would not want that and for sure don’t feel sorry for me. We have had a large share of good fortune in our lives, Irene and I. Dealing with this disease is one more piece of life. We are tackling it the same as trying to pay bills when we were first married, and the bank account was empty. We’ll figure it out.

I rarely ever play the Lottery. People probably think I’m kidding, but I have always said I don’t play because having Irene for my wife has been like winning the Lottery. How could I be any richer?

I still feel that way. Hug your family folks. Live. Our time is shorter than you can ever imagine.

NOTE: I will be writing blog posts, checking out equipment and still offering up info about photography. I have to have some outlet! By all means stay in touch and if I can be of any assistance, you know how to reach me.

Wally KilburgComment