I'm really bad about this blog thing......

Let's see, nine months ago I wrote my last entry. Not much has happened since then. NOT!



Dad's decline is ongoing. I think the last six months have shown significant changes. He can no longer manage to read the newspaper, he doesn't follow the stock market (huge sign he's declining) he doesn't play solitaire anymore, he doesn't listen to music at all. All these things were his life when we brought him home from Arizona. A typical day now consists of getting up for breakfast, walking to the dining room, coming back to his room, napping, getting up for lunch, walking to the dining room, going back to his room, napping, getting up for supper, walking to the dining room, going back to his room for the night. You see, he accomplishes all these things at such a painstakingly slow pace, it takes an entire day. There are periods of wakefulness when he manages the occasional haircut or shower, all with much assistance.



He also manages to find time to complain to "the highest authorities" about any number of things. Let's see....people come into his room when he's in the dining room and steal things. (He refers to plates, bowls, cups that he labels with a Sharpie with his name. All these things belong to the nursing home.) He still needs to go to the hospital where there are doctors, not nurses, that can address all his medical problems. The people at Oak Hill are keeping him there against his will because he is a paying customer. Of course they're happy to have him!

It's just sad. He has said to us more than once that he doesn't know why the good Lord just doesn't take him. He is ready. Too bad the medical community, our society, and the powers that be can't let that happen. He absolutely recognizes the fact that he is no longer productive in any way. Why would someone as productive, driven, intelligent, clever, determined, and stubborn as Leonard Schultz want to live in his present condition?

We just pray he can be comfortable. Alzheimer's disease is one of the most unfair afflictions that can happen to a human being.

It's been a while.....

Can't believe how time flies! I haven't posted since October! It does speak to how life has been, however.

Dad has somehow miraculously settled in to the routine at Oak Hill (the nursing home he is in.) Of course he will always complain, saying he is being incarcerated, he is being mistreated, they aren't addressing my medical needs, and on, and on. But when given the choice of moving into his own apartment in assisted living, he vehemently declined, saying "they don't have the medical staff to address all my problems!" At this point he says, "I'm fine in the room I'm in and besides, I don't need all that room in those apartments." Man!

He has gotten much stronger physically since going to Oak Hill. He will never give appropriate credit to the physical therapist he worked with. No, "It's my own program that's gotten me where I am today." (sigh!) He doesn't remember having to be lifted from chair to bed when he first arrived because he was too weak to do it himself. Now, several times a day, he walks the hallway - 50 yards one way, he reports - seven times. He refuses to use his walker, even though he walks much faster when he uses it. The nurse told me yesterday she is so afraid he's going to fall, to which I answered "yes, he will. It is just a matter of time." Am I going to be the one to try to change his mind? Not on your life. It will never happen.

My mom and I enjoy living together in our villa. I'm having a blast decorating it. She and I butt heads once in a while. Gosh, how normal are we? Our villa is .3 miles from Oak Hill - a real bonus. I can walk to go visit Dad. (Like I really do that!) Life in Waterloo is simple, and I love that. The hectic in my life is my job, but I'm really starting to like that. All in all, things have settled down.

If only Dad could feel the same way....

What in the world??

Here's Dad after 18 hours in the hospital. Seem curious?



I wish I'd kept up with my blog during the past three weeks, but "life with Dad" was all consuming.



One day not long ago, Dad had what I've referred to as an Alzheimer's meltdown. He spent an entire morning on the telephone calling our landlord (to tell him what a health hazard this duplex was) an attorney (who he thought would come to his house to rewrite his trust) who he fired later that same day, his financial planner (who finally learned how really ill Dad has become) and his Belleville doctor, with whom he made an appointment in order to fix all of his medical problems. He then called both Jane and me at work to let us know that "he is the captain of this ship and, by God, we are going to do things his way!"



The doctor's appointment he made was a gift. It gave us the opportunity to speak with the doctor ahead of time to let him know that things were going downhill rapidly and Dad needed a serious change in his living situation. He was hospitalized with a diagnosis of "decline in mental status" with the goal of nursing home placement. What followed was a nightmare.



The hospital called the morning after he was admitted to tell us he'd fallen during the night. Actually, he decided at 11PM to do some deep knee bends because he'd been in bed all day. He passed out and was found in a rather large puddle of blood. The picture illustrates the laceration on his forehead along with a fractured nose. About a week later, we learned he also fractured his foot...but that is an entirely different story. The fainting episode earned him a bed on the telemetry unit on a heart monitor.



Three days later, we got a call at 1AM to let us know he was in ICU on a continuous dopamine drip and an external pacemaker. Big words that meant his heart was sick. While on the monitor on the telemetry unit, he'd had an episode of atrial fibrillation followed by a 12 second pause. It pretty much looked like his heart stopped. The end result was a diagnosis of "sick sinus syndrome" and the fix was a permanent pacemaker and yet another new prescription med. It was his "sick sinus syndrome" that caused the fainting resulting in his fall.



Eight days after he was admitted for a three day hospitalization for nursing home placement, Dad went to a nursing home in Columbia, 20 min. from Waterloo. He hated it there. Even though we all knew it to be a nursing home with a very good reputation, we understood why he felt that way. There were alarms going off constantly, patients shouting and generally speaking, not a very healing environment. God answered our prayers when three days later, there was an opening at the Alheimer's unit here in Waterloo. He was transferred there, now only 5 minutes away from us.

He's still very unhappy, but they tell us every single person admitted there is and then they eventually settle in. I don't see anyone as functional as Dad is, so I'm hoping after all the physical, occupational, and speech therapy (due to the fact that he sometimes chokes when he eats) he'll be able to transfer to the assisted living side.

When Dad has bad days, they're very, very bad. When he has good days, they're pretty darned entertaining. Today was good. I spent an hour and a half outside with him in the beautiful sunshine learned more things about his youth than I ever could have known. What a blessing!

Here's hoping Dad can find some kind of joy in what's left of his years on this earth. We never know what God has in his plan for us. I'm praying this part of his plan for Dad will end soon.

Things I've learned....

I really can survive without air conditioning.

It's been at or near 90 degrees all week. Dad wears a flannel shirt and keeps the house open.....for the fresh air. The humidity, of course, nearly matches the temperature. The good news is that I've had to work four of the five days this week. St. Louis folks like their air conditioning. By the time I come home, it's close to sundown and it really does become bearable again (only because it's September) So, even though I haven't been overcome by the heat, I still don't have to like it.

Always have your masking tape and Sharpie handy.

Dad labels things. Everything. Most importantly, food must be labeled. I came home a few days ago to find Dad in the kitchen happily preparing what he thought would be a nice lunch. He was chewing on something and I looked at the plate on the counter. "Dad, what are you eating?" "Well, I found this in the door and thought it smelled pretty good." "Dad, that's Eli's dog food." "Oh! Well, it's pretty good!" A few minutes later (I could tell he was really mulling this one over) he said to me, "Now do you see why I label everything?" I have developed a close relationship with the masking tape and Sharpie.

Caring for a patient with Alzheimer's disease can never prepare you for life with a parent with Alzheimer's disease.
"Who are you and what have you done to my father?"

*A formerly vibrant man who walked two miles daily can no longer make it around the block.
*An extremely healthy man for 85 years who's dental assistants didn't believe him when he reviewed his medical history (or lack thereof) and who prided himself in the fact that he never needed prescription medication now has a "menu" of pills for which he has created a schedule around each meal. Requests for medical specialists occur on a near weekly basis: his nose runs when he eats, he had to see an ENT dr; he has diarrhea for four days, then constipation to the point that he needs to go to the emergency room (which did resolve itself without the ER visit.) Now he is demanding to see a specialist so he can have a "colonostomy." He woke up in the middle of the night with a pain between his fourth and fifth toe. After rubbing vitamin cream on it (which turned out to be Neosporin) and getting some relief, he thinks he should see a podiatrist. I won't go into his dental issues. Suffice it to say, even though he moves at the speed of turtle, his ill fitting dentures double the time it takes him to eat.
*Saddest of all, my financially savvy dad can no longer make simple change for twenty dollars. That alone was our biggest red flag.

The good news is he still knows everyone. He can still cook for himself and generally take care of himself.

It is quite an education.

Dad's new friend

One of the things I really stressed about was how Dad would take to Eli. He's never had an indoor pet. Seems like maybe things will work out fine!

David will let us know exactly what to do with the truck.

The journey begins...

The cross country trek took about 18 hours. Jennifer and Becky drove the entire way. Anne was spent.