The 36 Hour Day

All who know me personally, know that there is an illness in our home.

The two-year anniversary of my husband's diagnosis of Early Onset Alzheimer's Dementia is upon us and we have seen many changes. It is a compelling situation and one that simply cannot be planned for.

First, for anyone not familiar with EOAD, it accounts for less than 5% of Alzheimer's patients. Typically brought on by genetic mutations and certainly exacerbated by Bill's long term bout with hypertension. That Vascular Dementia played a roll early on is something I truly believe along with untreated stress related anxieties. There were also several back-to-back surgeries in the mid 1990's that may play a role in his disease, as all required long bouts of general anesthesia.

Bill was also diagnosed with Post Traumatic Stress Disorder and it is believed that left untreated for over some 40 years continued to interfere with his cognition and rationale. For many years prior to his diagnosis, our family had noticed subtle changes and did what all loved ones do....we compensated.

To digress, we are speaking of the most loving and caring man I know. That hardened rough exterior was always in direct conflict with the dependent man he is. By dependent, we refer to the dependencies on staff, family and friends. AD patients become experts in "covering up" their illness. They blame others for things gone bad or wrong and place blame sometimes when blame is not necessary. They know there is something gone ace-deuce but cannot grasp it as their memories first play tricks on them and in Bill's case, his unintentional response would be to deny, deny, deny.

In the early stages of his diagnosis, many of Bill's long term friends called and came to visit, only to find that they saw no difference in the man and friend they knew. To a passerby, this is most likely true. Two years ago we were introduced to a wonderful neurologist and very aggressive AD medications which were showing great promise in "slowing" the effects of the disease. It was explained to me then that we were not looking for a cure, but a prescribed method to keep him at home for a longer period of time.

First, he was angry and then aggressive. We have had instances where he has hidden from us and because of hallucinations, has once run away from home (in the car). Of course by the next morning, he was ready to come home. Not uncommon, as he forgets rather quickly what made him mad or angry in the first place.

Forgetting is certainly a problem. Short term memory loss is a killer. Just in the wee hours this very morning, I was awakened by the sound of an electrical buzzing in the garage. When I went downstairs, I noticed water running out of the HVAC duct work and into the garage door opener motor. Getting it unplugged was the first order of business and then I ran back upstairs to try and find the source of the water. Bill's bathroom sink was running over, spilling onto the flooded floor and into the HVAC vent in the floor. No doubt, he had been up in the night, rinsed his mouth out as he commonly does and never thought to shut the water off.

That is a pretty common occurrence. Water in the kitchen sink, water in the bathroom sink and shower, water at the outside spigot. I regularly just sit down in a chair and hear water running and then go and search for the source. He has turned on the gas grill outside to "burn off" the grate and I find that its been on for days - am sure the gas company is thrilled with that!

He obsesses these days over his phone (which he still calls his radio), one grandson Dalson, how gray his hair is getting, that his arms look just like J.W.'s and a special hair brush. His habits are changing. He wants 4 pop-tarts for breakfast every morning, Even though you offer cereal, oatmeal, eggs, bagels and he wants strawberry or blueberry - no cinnamon please. He wears the same uniform everyday which consists of Wrangler denim carpenter shorts from Walmart and Guy Harvey T-Shirts. You can buy him a another kind of shirt, but he won't wear it.

I started this blog with the specific intent of organizing my thoughts about his illness, our trials and the like but after my first post never wrote again for a very long time. Instead, I dealt with with the effects his illness and accompanying and immediate financial consequences were having on us along with a 15-year old daughter who will turn 17 this week.

Today we write to mark a milestone.

We generally let him sleep until he gets up as a sudden start creates confusion and this robbed him of the trips he took in the morning to take Kate to school downtown. He has not been able to administer his medications to himself in quite some time, he can mow the grass with assistance as he forgets how to get the bag back on after emptying and how to restart. From time to time, Bill will wander around the neighborhood in a borrowed golf cart, watches too much television and likes to spend time in the garage in his favorite chair with the fan blowing.

As much as he used to like to go, he rarely likes to go anywhere. If it is just family, then he will certainly be on the ready but otherwise he is content to stay at home. We do better with schedules and normalcy. Any new event, visitor coming or dates are issues as he has been unable to ascertain days, dates and seasons. He can no longer make change or work the credit card machine at the gas pump. And, some days he will ask you the same question over and over again. Then the next day, he may be as clear as a bell. It is a truly a mystery what each new day brings.

Perhaps because of our denial, I felt that writing these things down were an invasion of his pride and privacy, however we have now moved into new territory. Its like this......if you want to go back and find something later, hide it. Things move around the house, things go missing often, the milk ends up in the pantry, things get broken and have to be repaired because he gets frustrated, vehicles have bad luck so it has also become an expensive plight as well.

It is 10:30 am, he has just risen, stepped up behind me and kissed me on the neck. "Do you still love me" he asks. His need for constant reassurance is daunting, the continual questions are exhausting, that he is mobile in body but not in mind is horrifying. "Of course I love you - and you are having frosted mini wheats for breakfast".