Imagine a rugged, gregarious, elderly man. He is quick to tell a story and flirt with all the ladies. He was the toughest cowboy who ever lived. He has never been sick a day in his life. He does not even notice the cut on his hand. He will blush and admit to some memory problems, however he is quick to reassure you that he is doing just fine. He explains all the help he receives from his family and friends. He tells you about all the things he is still doing. This man is healthy as a horse.
It is easy to assume he is doing just fine, until you realize this is the third recitation of the same story. He goes to church every Sunday. He spells out his daily routine. He will regale you with tales of his fishing adventure just last week! Biggest fish he has ever seen! He still drives around the town he has lived in for 70 years. All the while, he keeps forgetting about the cut on his hand. He looks down with a puzzled expression every time the bandage enters his field of vision.
He just wants to go home. Yes, he is well aware that his children want him to move closer to them. He is indignant and proud. He can manage just fine.
Sure, he may have had some difficulty managing his bank account- that darned internet is too complicated for him. It’s not surprising he does not remember which way to turn when he drives down that particular street, they must have changed it all up. There is entirely too much new construction around here anyway. It is just a waste of the tax payers money. They keep changing the roads every week!
He just wants to go home. There is nothing wrong with him. He is fine. He has been taking care of himself for 65 years. He raised four children. Of course it has been more difficult since his wife died. She had always cooked the meals, taken care of the house and laundry, and managed all the finances. He sure does miss her.
Keeping all his medicine straight is difficult, his doctor gives him too many darned tiny pills, and have you ever tried to open one of those bottles? You almost need a hacksaw to get into one of them. It is okay, the lady that cleans his house puts them into a box for him. One says AM and one says PM. Problem solved.
He finds the bandage again. He is getting slightly irritated at the discomfort. He starts pulling off the gauze so he can leave. He does not need to be tied up. Why would he have his hand wrapped up? He needs to get that mess off so he can go home. Besides, that is not his bandage. He doesn’t need it.He does not believe he would care to buy that today. He promises to come buy it another day if I need the sales commission.
He tells you about fishing last week. It was the biggest fish he has ever seen. He reeled in it all by himself. He is demonstrating his manly prowess, and proving he can take care of himself. Sure, he lost his wallet again. Nope, he has no trouble getting where he needs to go. He has never been in an accident or had a traffic violation.
He is quick and sure to answer your questions and concerns.
He can tell the best stories about when he was a cowboy. He still tends all his own fences. He just plowed his garden last week. What on earth could you possibly be saying? Of course he can fend for himself! Besides, he has wonderful friends who drop by and check on him.
He was horribly confused and combative in the night. He pulled out his IV site (more than once.) He spilled his coffee repeatedly. He wanted his pants. What kind of nonsense is this? Stealing a man’s pants? He was not going to stand for this. Fine, you know what? He has money. Where is his wallet? He will buy his pants back from you. He never uses the call light despite repeated reminders. He keeps insisting he is not in the hospital.
You realize he has no idea who you are. You have spent countless hours with him over the past few days, and in fact you were just in his room fifteen minutes ago. Every time you walk through the door, you are greeted joyously. He does not remember the nasty tone of voice he was using with you last time you were in here. He does not remember that you are the one who will not allow him to go home. He tries calling you darlin’ and he gives you a little wink.
It is not too hard for you to redirect him. All you see is a sweet old man. You can even laugh at times. Some of his antics are funny. He is “pleasantly confused” and you are well aware he does not mean any of it. This is not the man who raised you. You have not witnessed his decline from greatness. You are not the one who will have to go home and feel remorse for not being able to make it work with him at home. This is just another day at the office for you.
His son sits with a resigned expression at the bedside. He never interrupts or corrects his father. He only fills in information when his father looks to him to answer the question. I keep trying to give the son an opportunity to pipe up and let his father know he can’t go home in this condition. I try telling this man he can’t stay at home alone at night. I look to his son and wait for him to tell his dad he has to come stay with family. He only asks me how long I think his father will need someone to stay with him. I can see the wheels of desperation turning over in his mind. Oh. He is not always this bad. Okay. The infection could explain it. Perhaps a few days or weeks would be sufficient.
Turns out, Paul Harvey was not going to chime in “With the rest of the story.” (If you don’t know that reference google Paul Harvey.)I am mildly concerned, but feeling a little better. This confusion could be the delirium so many patients experience in the hospital. Nope. Not at all. Charming Grandpa has not been doing well for a while. Ok, no problem. Just get him to go home with his son. Phew. Glad I solved that problem.
It is painful to see adult children struggling with their new role as a protector and decision maker. What do we do when the body still works, but the mind is no longer able to handle the complexities of life? How do you take away your father’s car keys? How do you finally insist they cannot live at home anymore? It is not stubbornness that leads to their insistence to stay home. They are unable to realize and comprehend the reality of their cognitive decline.
So, what happens when they refuse to go to an assisted living, nursing facility, or even to live with relatives who can look after them? How do you compel someone to leave the home they built and raised their family in, when they feel fine? I somehow managed to convince myself patients with dementia actually understood how confused they were. Oh! This is why we perform mental evaluations. People do not know when they are confused. They truly believe everything is fine. Now what? You seem fine in short conversations, you are not physically debilitated, why would I say you need to be forced from the home you built with your own two hands. Yes, I remember you still mend your own fences. Yes, you used to be a cowboy. A real cowboy, not one of those fancy boys.
This is not an easy process. We don’t like to hold people against their will. You can’t just kidnap grandpa because you decide it is the right thing to do. Furthermore, NO ONE EVER TELLS YOU HOW TO DO THIS! Maneuvering through all the rules, insurance regulations, and red tape is maddening. Now, imagine trying to handle all of this if you live and work somewhere else, compounded by the fact that your parent has everyone fooled. He looks great! He is at church three times a week. He does not realize how severe the problem is, and neither does anyone else, until something happens. He gets lost and drives 3 states away. He leaves the stove on and starts a fire. He takes all of his money out of the bank and no one can find it.
There is no easy answer.
However, your grandpa with dementia may be entertaining a group of nurses tonight. He will keep them on their toes. They will watch over him while you try to sort out his affairs. They will nurse him back to health from whatever ailment landed him in the hospital. They will make sure someone is keeping an eye on the guy who likes to Pole vault over the bed rails while they rush to take care of their other patients. There will probably be a bed alarm that shrieks out every time he tries to get out of bed. A gaggle of nurses will rush to the door to protect him from harm. He will not remember the instructions he received 2 minutes ago to use his call light. These nurses will quietly ask you about discharge planning, and express concerns about him going home alone. They will be there to support you while you go through the hardest experience of your life.
He will vacillate between irritated and charming. When he turns on the charm in an attempt to manipulate his way out of this situation, he will capture a few hearts. He will demand he be released from this prison. Charming grandpa will constantly interfere with all attempts to treat his medical condition. He will forget he is sick.
Dementia is hard.
The aging cowboy has no idea this is happening. He will tell you again about his fishing trip. He will rip the bandage off his hand, and try to get the string, actually, those are sutures and I really wanted them there, out of his hand. We have only had this conversation 27 times in the past three hours. The cowboy will become furious at his wrongful conviction, and as soon as he gets distracted the situation never existed. He will politely ask to go home. He feels fine. There is nothing in the world wrong with him.
His son will tell me how his dad is the strongest, toughest, and bravest men he has ever known. He is facing a tough battle. He will have to overrule the ruler. No one will be able to convince him he is not a terrible son for taking his father from his home. Worse, it may not even be safe enough for his father to come live with him. The son will have to vigilant to prevent the cowboy from absconding into the night.
If they live long enough, even the strongest men (and women) are at risk for developing cognitive decline. It will happen in bits and pieces. Things will appear manageable even after they are careening through a mine field. We have to support the families of these super heroes. We have to reassure them, offer guidance, and listen most of all. It is heart-rending to watch.
Basically, there is no easy answer. It is difficult to prepare for this situation because you want to believe it will never be that bad. Your dad is the strongest man in the world, why does he have to lose his independence?
It must be hard to parent one’s own parent.