Advice on Providing In-Home Health Care for a Parent With Alzheimer's and Vascular Dementia: Some Lessons Learned

Last week, we decided we needed a bed addition to raise and lower my father in law's head easier, so that when he needs to remain in bed and eat we can be ready. So, we designed and built then installed the framework for it and found it worked well. However, we also learned that in order to raise his head, one of us would have to hold him up in a sitting position while the other maneuvered the frame up or down. Not impossible, but definitely challenging. So I decided to build a better mousetrap because I hear the world will come knocking on my door.

How to raise and lower the bed frame with him in it. Electric would be nice, but definitely not cheap. Mechanical would work but again, costly. Plus how to place it under the bed and be able to access it when we needed it. So more thoughts, more brainstorming and voila! A solution appeared. A block and tackle system.

So a trip to the local hardware store to shop for a couple of small block and tackle pulleys, a couple of screw in eyes and back to work I went. While I had the frame off, I also padded the end piece which keeps his mattress in place with some bunting and material, using my staple gun to affix it in place. Then I added a cross member to the forked pieces used to elevate the mattress in order to better manipulate it when lifting. I then set out to affix the block and tackle.

They are small, meant for 3/16" rope and perhaps 3/4" diameter wheels. Cost: $1.50 each. Hook to place in the wall: 3" long, 1/4" shaft and $1.25. Screw eye to place on the frame: 1" diameter, 1/4" shaft and $1.25. A clevis to connect the lower pulley to the screw eye ($0.89) and that completes the investment. Total cost: $7.00 with tax. A length of parachute cord, find a stud about 6 1/2' above the floor and thread the line through the pulleys, then we test it out. It works, a little tough though. I look at it closely and find the lines twisted a bit (no idea how) and with a moments untwisting and another try, smooth as silk. I have my wife lie down on the bed and try it: works like a charm! We try it out Sunday evening with him in bed, and it is amazing how easy it works.

A note here on the line we used. We tried clothesline initially but found it stretched too much, plus it had a breaking strength far lower than we are comfortable with. Parachute cord is much tougher, doesn't stretch and has a high breaking strength. And the cost was only about $3.50 for 50'.

Thus far, he is eating almost everything we fix. Breakfast consists of eggs, pancakes, bacon or sausage, and biscuits and gravy in some combination every day. These provide a bed on which to mix in a medicine which is crushed with the pill crusher. Lunch is usually either leftovers from the night before or a pot pie, sometimes even Sweet Sue Chicken and Dumplings, or Dinty Moore Beef Stew. He likes these and we will mix one in periodically for him. Dinner can be whatever we choose to fix, barring a few exceptions. We won't fix him chili (obviously, as what goes in must come out) or anything spicy. We tried spaghetti but the logistics of trying to wrap the noodles around a fork proved to much for my fingers. Tonight we had roast and potatoes, cooked in the crock pot all day. He really liked that. We also made cinnamon rolls for desert to which we said they were "delicious".

We've fixed pork loin, chicken breasts on the grill, hamburgers, hot dogs and brats, french fries, and other mainstays of American households. We just have to cut things into bite sized pieces and take our time, providing lots of water for drinking.

For snacks, we focus on pudding, cookies, snack cakes (he loves the cinnamon cakes warmed up and served with cold milk) and even Chex mix. We do have to watch what we allow him to feed himself as we have a small dog in our home who loves to pretend he's a vacuum cleaner and suck up anything that falls to the floor. The other day he came running into the kitchen chewing something. It was part of a peanut butter cookie. No chance getting that away from him.

Some are over the counter, such as a daily multivitamin, aspirin, and a pain pill. Most are controlled ones, requiring a prescription. They vary in size from tiny to horse pill sized. Some can be chewed (although not suggested, they have no ill effects) and some cannot. One he takes, Depakote, is a horse pill, 500 mg in size. We have to give it three times a day and it is time released so no chewing. If they are chewed (we found out) they have severe side effects including extreme agitation. If the person is in a bad mood to begin with, this will accentuate that mood. As I said, we have found this out. Supposedly, it is for bi-polar disorders and seizures. As he often tries to chew his med's when he is tired, we face a bad situation: give it to him and deal with the chewing and temper tantrum, or not and run the risk of seizures? Thus far, we have dealt with the behavior but it is getting so bad we are considering not giving him a dose in the evening in order to just get him into bed without running the risk of a severe bite while transferring him and changing him. Ultimately, I fear there is no right answer.

**UPDATE** Wednesday September 18, 2019 We received a call from our pharmacist detailing alternatives for this pill. There is a less dosage pill (125 mg) which would require four at a time, but they are capsules (they call them "sprinkles") which can be opened and put into a soft food item and swallowed. Still time released and don't chew but granular in form which lends itself to easier swallowing. We just tried these out in cinnamon applesauce and it worked great. He swallowed them down with no issue at all. Yay!! Thus far his behavior has gotten significantly better and his mood swings have diminished.

We use the internet daily in order to learn something, anything which might help us better care for him. Today (Tuesday 9/17/19) I read a couple of articles detailing late stage Alzheimer's and another detailing the 7 Stages of Alzheimer's. For the most part we knew everything in these articles. And in knowing while reading we understand we are in the final stages of the disease. He is sleeping more, barely able to communicate at times, moaning and growling, and this morning, for the first time, was unable to eat. He took his med's well, no chewing at all but could not chew his breakfast at all. We were able to get some water and a little milk down him but at present he is sitting in the bed we made for him, eyes closed and occasional noises coming out of his mouth.

He spent virtually the entire day like this, in bed, eyes closed, eating nothing, drinking little. The next morning (Wednesday 9/18/19) was the same. A few bites of breakfast, a couple of sips of milk and water, minimal water at lunch with no appetite at all. It worries us to see him like this. Is this what they call "actively dying"? Then, around 5:00 PM he opened his eyes and we were able to give him the Depakote in applesauce plus more applesauce. While she fed him these I made a quick run to the store for more applesauce, more pudding, some Jello, a few cans of soup, some soda and a sports drink in fruit punch flavor. This morning his blood sugar level was low, 59. He is a Type II Diabetic so this is really cause for concern. But, he hasn't eaten or drank much for the last two days. Now that he was awake we tried to give him whatever we could to help. Some vegetable beef soup, more sports drink were all he could handle but that's more than he's eaten in the last couple of days total. He is more alert, and is able to verbalize thoughts into sentences. He appears to be a youngster, late adolescence to early teens perhaps; difficult to tell. But he did ask if we told his mother about the sports drink before he would drink it.

These past few days have been a whirlwind for us. We had a Home Health company, Integrity, person visit us to appraise his situation. He was extremely kind and very nice during our visit and gave us key information regarding what kind of care was available. Unfortunately, he also gave us the news that my father in law was not the type of case his company would be able to take on. Home Health is more tuned to assisting people who have a chance at health improvement; our case is such that no improvement it expected.

However, he did share better news with us, telling us his company has a Hospice group as well and in his opinion, our case was tailor made for that type of care. He placed a call before leaving. We received a call shortly thereafter from the director of Integrity, making us aware that she did have care available for us. But, (there's always a but it seems) depending upon where we lived we may or may not be eligible for that assistance. Once it was determined we lived slightly more than an hour away from them we learned we were not eligible. Each person receiving care must be within an hour's drive from their base location and because they are on the south side of Joplin, we are slightly more than an hour away.

But (another but, this time a good one) we are within reach of a few facilities which can provide assistance. She would make a few phone calls and get back with us. Later that day, she called to inform us that a company out of Lamar, Compassus, would be contacting us in the immediate future. She then relayed to us how she came about that decision, as several companies were within the hour time limit. She calls the company; if no answer she leaves a message. She then gives them a limited amount of time to return the call. If they do, then she knows they have sufficient staff to help us any time; if not, she knows they are not staffed enough to help in a timely manner.

The company contacted us, set up a visit and arrived spot on time. A coordinator arrived first, followed by a nurse. They were extremely kind and informative, giving us information we never would have thought of on how to proceed. Need a hospital bed? Done. Better wheelchair? Done. Anything else? How about that lift you spoke of? Done. Side rails for the bed to keep him from rolling off? Done. Pads for the rails? Done. Bedside table that can reach over the bed for feeding him? Done. Air mattress for the bed to assist with bed sores, one that inflates different areas to periodically move him so no sore can develop? Done. Wipes? Better diapers? Gloves? Cleaning supplies? Training? Done and done.

These people are so kind, thoughtful and helpful that we are overwhelmed. Then a social worker came to visit, offering his assistance and knowledge. A chaplain will visit next week and we have visits set from no less than four people to help us each week, with multiple visits from each available. There is a respite available, five days per month where if we need to go anywhere, or just need to go out for a movie or something, they are there to cover us. All with a smile and a hug, and huge amounts of caring. We have a number to call anytime, day or night and guaranteed call back within ten minutes.

We received instruction on how to better move and turn him without causing any discomfort, using a bed sheet. It is folded in half and placed beneath him, then using the sheet we can grip it close to his body and move him with ease up or down in bed, or roll him from side to side. So much easier than what we were doing! But we also learned that some things we had been doing were the correct way, such as folding the diaper or pads in thirds then placing them beneath him while on his side and rolling him back over to pull it out on the other. They praised us for figuring that out on our own, saying it is a taught skill at their company. Good on us!

They complemented us on our solutions to the problems we had been facing, such as the pulley system for raising the bed, boardwalk outside, ramps and such, saying that most people do not do things like this, rather they walk in to any manner of problems which have to be taken care of first before providing the assistance for the infirmed person. They called our room for him "his own apartment", saying that by providing him his own space we were doing exactly what was needed. Quick to praise, quick to offer assistance, quick to care, we are already so very thankful for this group of people.

We are experiencing the highs and lows of this disease on a daily basis. There are days where he is completely catatonic, barely able to drink from a straw and then we have to "prime the pump" by dribbling drops of liquid on his lips to get a reaction. These stages have lasted two days or so then he will wake up and be hungry, smiling and playful. We have this behavior for two or three days before he relapses into a between stage, not fully awake nor asleep, just in between. We can wake him for meals and sometimes get minimal conversation from him, answers to questions given several times but nothing offered to us.

Then there are the days where he shams being asleep in the morning as we begin to get him ready for the day. We will take off his blanket and begin to clean him up when he throws his arms up and screams "arrrggghhhhh!" at us, trying (and succeeding) to scare us. He then laughs before lying still and allowing us to continue to perform his morning ritual. One morning my wife pulled his diaper from beneath him and it squeaked, sounding much like another, stinkier sound (if you get my drift). He quickly advised us that "It wasn't me!" to our obvious laughter.

His agitation levels have dropped, due no doubt to the proper taking of the Depakote. If he does get mouthy, such as when we are changing him he might tell us to "Get out of there!" or cuss at us, my wife is now speaking firmly to him telling him to stop it, and asking him if he would like it if we spoke to him in that manner. For some reason, that seems to get through and he stops resisting and speaking that way virtually immediately.

But it is wearing on us, this watching him continue to fail. I liken it to us being a rubber band, stretching out and snapping back. One of us will go somewhere, only one. We then return as quickly as possible. One, and only one can leave at any given time.

We have had the hospice team in for several visits so far. Aide, nurse, chaplain and social worker are all fabulous. The aide comes twice a week to give him baths and help us move him about; the nurse comes twice a week as well to check on him, asking about his med's and how he is doing. She also let us know that when the time comes where he is in great pain there will be something to ease his pain and give him a measure of comfort when he needs it most. The chaplain will be coming by twice monthly to visit with us, speak with our son and anything else we might need. The social worker is on a once monthly visit cycle but available anytime should we need him.

Something else came out of our first visit with the chaplain: the knowledge that they will be available for up to thirteen months after he passes for additional assistance in anything we will need. All of us, anything we might need in the manner of mental health aspect for our family. This was unexpected and will be most welcome when we require it most.

Saturday, September 28

He awoke this morning somewhat groggy, with a slight slurring of his words. Whether from sleep, blood glucose levels or a possible stroke overnight we don't know. But he took his applesauce and medicines well, followed by eggs, sausage and pancakes. He ate most of his breakfast and drank about half of his power drink. We put on a John Wayne film (his favorite actor) and after we positioned his bed let him relax. From there he became if not catatonic, then severely listless. He slept virtually all day long,not eating his lunch nor dinner. Again, we worry. Then after a breakfast the next morning which consisted of two bites of eggs, only one of which was swallowed leaving the other to be removed somehow, no lunch again he suddenly awoke in the afternoon completely wide eyed. It is so strange, unbelievably frustrating and hard to comprehend and deal with, this damn disease.

I wonder at the continual changes in his behavior. Is his mind truly becoming something comparable to Swiss cheese? Do the electrical impulses generated within get lost on the way from one location to another, encountering the gaps in his brain much like the holes in the Swiss cheese are? Simply moving along and encountering a large hole, preventing it from continuing onward? Then later, something closes in the manner of a switch being closed, thus connecting the two sides and suddenly thoughts can rush across once more.

Is he aware of these interruptions? Sometimes we can tell he is trying to do or say something, as he will begin a sentence then suddenly begin stammering, until he waves his hands in frustration and halts his attempts. I know that at that moment in time he has a complete thought in mind but is unable to force the words from his mind to his lips.

I will halt our conversation and supply of information and learned wisdom at this point. I have found a book online in the library I am associated with which has piqued my interest. It is exactly what I am doing at this point, providing a view from the caregiver's standpoint. I am anxiously reading it, both for tips and pointers and to see how they dealt with what we are encountering. Once read I will pass along the name and title of the book to you for your perusal.