Week Two of Providing Full Time In-Home Health Care for a Parent With Alzheimer's and Vascular Dementia

Is there a doctor who truly cares and can assist us in our journey? Thus far, we haven't found who we are looking for. In this small town, an hour away from Joplin and half again that to Kansas City, we find ourselves stuck squarely between cities which have good health care available yet no one seems to desire to live in our town. It isn't a tiny town, being moderately sized for the area. Some towns are larger, some smaller. It is the county seat, which should count for something but it doesn't seem to amount to much at all. Doctors living both north in KC and south in Joplin do travel here but are not here five days a week. Usually they are here three days at best, alternating with other doctors to provide a service for the area.

But you have to be seen by them, and that means that if you want to be sure of getting coverage every day of the week, you have to see a doctor that is here every day or else see every doctor to cover your bases. Nice system.

Right now, we saw a doctor last week on Wednesday. Since then, he has only been in town two other days. As he is busy seeing other patients (I completely understand) he has been unable to proceed with our requests of assistance in gaining a lift system, a better wheel chair, in home health care assistance (all of these require him to sign off as being needed before they can be put in place) and to date, nothing. But now we have a serious health question for him and are trying to get information from him in order to care for my father in law and cannot even get them to call us back! It is frustrating beyond belief!

My father in law is passing blood in his urine. Bright red blood. We believe it is that damn UTI (urinary tract infection) again. In reading his records, my wife found they had treated it with Amoxicillian, which while a decent antibiotic, does not pack enough punch to rid him of it completely. It has returned. He is displaying severe agitation, yelling at us, cursing, his body shaking. My wife asked him if he hurt anywhere, to which he was unable to answer coherently. She then asked if he could show her where and he placed his hand onto his groin area. She called the doctor, waited, called again, waited again and finally drove over to see him. She showed them a picture of what was going on, blood and all. They called in a prescription pronto. A much more powerful drug, but one that (of course) has side effects. Brittle bones and possible joint separation, anxiety, and so on and so forth. He has trouble taking large pills so I spoke with the pharmacist, asking for ideas. She gave me a boatload! She showed me a pill crusher, told me to mix the crushed pills into pudding, mashed potatoes, basically any soft food he likes. It works! Pancakes, turkey pot pie, biscuits and gravy, it all worked like a charm.

But the side effects are rough. His agitation levels are through the roof. Part of this is the pain, I am sure, but part of it is the medicine. A large part of his anger is directed at my wife. We think that it might be because of her being the one who cleans him up while I hold him on his side, or perhaps because she is the one who gives him his medicines. But these acts are not always in conjunction with the timing of her doing these things. He has spit water out onto the floor, trying to get us; yelled, cursed, even tried to bite my wife on her finger as she gave him his other med's. I told him to stop it and he grabbed my wrist and raised his other hand up, clenched into a fist, ready to fight me. He is not himself right now and we are so damn angry at the facility we took him out of for what they did, or rather didn't do: provide good care for him. We change him several times a day and he does not have any odors associated with him like he did when we visited him there. He always smelled like urine, his room stank of it, his bed, even his wheelchair. Here, with simple caring and attentiveness, he has no urine smell about him at all. None. Because they left him in a wet diaper for hours and hours on end, the UTI developed within him and we are dealing with it now.

One thing I want to mention about his anger, something I hope you will pay attention to. His anger is primarily at my wife, for reasons we are not sure of as I described above; but some of it can spill off to others. I feel that there are a couple of things which might be contributing to this situation: one, he has had mostly women caring for him while in care facilities so if there have been misbehaviors towards him, most likely it would have been by a woman and he is retaining that anger. But that would mean he is remembering it so that makes it doubtful. Secondly, he was taken advantage of by a woman to the tune of several hundred thousands of dollars, basically cleaning him out and leaving hum destitute causing a stroke which led directly to where we are today. Again, this would mean he is retaining the memory of her and as he doesn't know his daughter, I cannot give this one too much credence. Lastly, and most likely to me, is he is remembering his time with his wife, my mother in law. There was a substantial amount of acrimony there and I feel he is transferring the feelings for her onto my wife. Can't say for certain, just guessing.

I also want to say that I worry any time we are moving him from chair to bed and he is angry. The way I have to position him, his head right beside my head and shoulder, allows him the opportunity to bite my ear and/or shoulder area if he so desires. I believe that as he is unable to control his movements, arms and legs then he is aware that he can control his mouth and jaws. He has snapped at us in anger, at fingers and silverware, so I know he is able to do something worse. I can see my ear being a perfect target, or maybe the lower neck/upper shoulder if he has the impulse to strike back should he feel pain or threatened for whatever reason. Every time I bend over I think of the possibility.

We are learning things daily as we go along. Yesterday, I almost dropped him as we transferred him from chair to bed. He was so weak yet his legs gripped mine so tightly I could not raise him up enough to get him onto the bed very far. So, a couple of things have happened today. One, I learned how to better position my legs and feet in order to properly move him from bed to chair and chair to bed. Keeping my feet outside of his is key, so as to not allow him to grip my leg with his. Secondly, by paying close attention to where my feet are in relation to the chair's front wheels, we are better able to move the wheelchair under him once he is up. Sounds elementary I know, but putting it into practice is more easily said than done but it is very important. By placing my left foot directly between the front wheels I am in position to shift him into place and do not have to move my feet at all, just my trunk and him. Much easier.

Secondly, we decided we needed a system to raise his bed up slightly at the head, in order to allow him to better breathe at night (less snoring) and get ready for the time when he becomes fully bedridden. In examining him, his abilities, his symptoms we are coming to the conclusion he might be entering the final stages of dementia. Thus, his time with us is most likely short, possibly a year or less. Hospital beds, those that are adjustable, are expensive. Thus far we are still not in possession of any of the prescriptions necessary to have any assistance. No in home care, no transfer system, no wheelchair, nothing. All because we are waiting on the doctor to decide we are important enough to help, I guess. And so, we decided to DIY it ourselves. After all, I am handy with tools!

Kinda.

We looked at hospital beds, bed systems, bed lifts, bed this, bed that. Anything you could imagine, we looked at when it comes to something that would allow us to raise and lower the head of the bed, allowing him to remain in bed on those days he just has no energy whatsoever and still allow us to feed him and take care of him. They are expensive! A cheap one runs several hundred dollars and doesn't look very good. A good one runs thousands of dollars. And if we can't get a 'script for a wheelchair, how are we going to get a bed?

So, as that old saying goes, necessity is the mother of invention (or something like that). We examine the problem, puzzle around it, brainstorm and arrive at an answer: build our own.

First, we know we need to lift the head up. How to accomplish that? I have one more good sized piece of plywood remaining from my other projects. I get it, measure it, compare it to the twin bed he sleeps in. A near perfect fit for the upper portion of the bed. I look at the frame and find that, with a couple of 2" x 4" pieces I have left I can attach them to the plywood with some hasps, create a forked end on them and make them fit over the frame in a way that will provide lift safely and of sufficient height as to make him have a perfect raised head bed. Now, the mattress does fold upward easily, so no problem there but it might slide downward so the next problem is to solve that. Still have some plywood remnants left so let's create an end that holds the mattress in place, coupled with a framework that sets under the mattress, thus using the weight of him and the mattress to hold the framework in position, keeping the mattress in position. Genius!

And so, with an hour or so of work, I was done, it was on and tested by my lovely assistant (wife) and it passed with flying colors. Cost: $0 because we used materials left over from previous projects!

I cannot stress this enough: you have to take time to care for everyone else in the family, including yourself. We make it a point to have time each day for one another, my wife and I. It might be just a hug or kiss, it might be a conversation, maybe a foot or back rub, something. But we know we made this commitment so we understand that if those moments are infrequent, that is how it is right now. But our son, he's another matter. Mid-teens, new school, we have to remember to do something with or for him every day. Today was a project for him and him alone. While he was still at school, after I finished his grandpa's bed I set out to install a bracket on the wall for him to put his gaming TV on, raising it off the floor and up into a better position. My wife assisted, of course and we got it done in record time. Then we put together a desk for him to do schoolwork on, eat a snack on or use as a place for his gaming items. Placed directly beneath the newly installed TV, it provides him the best of both worlds, schoolwork and game fun. Added in a new recliner (purchased for his grandfather but a good intention gone bad due to logistics involving getting him into and out of the chair) and he is tickled pink, smiling from ear to ear. I love you son! You are welcome!

We are closing in on two full weeks with my father in law in home, and it has been hard, joyous, tiring, enlightening, virtually every emotion one can think of and experience, we have had. But, I find one thing we seem to be doing is not eating right. For me, by setting beside him and spoon feeding him breakfast, lunch and dinner I lose my appetite to eat a meal. I snack, eat rolled up pieces of lunchmeat, drink a gallon of tea a day, drink a gallon of milk every two or three days, but I am only eating a true meal a couple of times a week. Today, for example, I got up at 5:30 AM, showered, got ready to run my bus route, ran it, came home, helped to get him out of bed, readied breakfast as my wife gave him his med's, fed him while my wife did his laundry, set to work on his bed, did my son's projects, fed my father in law lunch, put him down for a nap, ate a couple of slices of lunchmeat, went to run the afternoon bus route, came home, ran to meet with DFS, came home, fixed dinner for my father in law, fed him, helped my wife with the evening pills, fixed dinner for our son, cut off a slice of ham for a sandwich then sat down. My wife does basically the same thing and even though we know its not healthy, find ourselves doing this day after day. We snack (a bowl of cereal or pop tarts for me, candy corn pumpkins for my wife) and we keep going, going, going like the energizer bunny, praying we don't run out of power. Between these highlights come time spent with my father in law, setting and talking to/with him, watching a movie or just being beside him, caring.

We then collapse around 9:30 or 10:00 PM and do it all again the next day.

Well, that's it in a nutshell for week two. We are still chugging along, day by day to provide care for him and continue to provide all we need for ourselves and our son. I will probably not write for a couple of weeks and see you all again the end of the month. Take care and God bless.