The Twilight Years Are Here

The Twilight Years Are Here

Thursday, July 26, 2012

I'm Better Than I Think I Am (Most of the Time)

I’m going to touch on a subject I have talked about before. It’s probably the subject every caregiver hates most to talk about. It’s definitely something I hate to admit. I am heading for a bout of “caregiver burnout”. I can feel it happening like a runaway freight train headed straight for me while I am tied to the tracks.

If you know a caregiver, give them a hug and offer to give them an afternoon off. You might just save them. I’m sure everyone feels it differently so I thought I would share a bit of how it feels to me. But first I have to explain how I get to this point. I take care of Dad round-the-clock five days a week. The other two days (Richard’s days off) I work overnight taking care of a 90 year old lady and Richard takes care of his dad. What this means is, I take care of people 24 hours a day 7 days a week. For a month at a time, I do really well, but after that I NEED a break. If I don’t get one, I start feeling like I am going to break. Imagine the emotional roller coaster caused by PMS magnified by 100 times or so and you will have a small sense of what it feels like.

I feel like I need to cry so often it disgusts me. I get horrendous headaches and I don’t sleep well. I have an extremely short fuse and it doesn’t take much to ignite it. I begin to second guess myself on every decision I make. I feel run down and can only hope I don’t get sick. I start having anxiety attacks. I pray for relief. I wish I were anywhere but here.

I feel like the very essence of me is being sucked out of my body, drained from my heart. I give so much of myself to my elderly people that there isn’t much left at the end of the day. It’s an exhaustion I never could have imagined until I had felt it firsthand. Maybe it’s because there is no “end of day” for a caregiver. You are on duty ALL the time. Even when I am sleeping, there is a monitor on in the room with me so that I can hear my charges, at home and at work. I have to be available if they need me. I’m not exaggerating when I say it’s a 24/7 job.

I have heard taking care of the elderly compared to taking care of a baby. In some ways it is and in some ways it isn’t. Babies don’t talk back or argue or sling obscenities, they can’t hit or scratch or bite. Babies are dependent in their innocence; adults are innocent in their dependence. Lifting a 20 pound baby and putting it into bed can’t compare to doing the same for a 100-200 pound adult. Honestly, you can’t even begin to compare changing a baby’s diaper to changing an adult’s. You can’t compare much about the two at all.

Try to imagine it… Your only time off is when you are going back and forth to the grocery, pharmacy, work and your child’s bus stop with an occasional trip to the bank or Walmart thrown in for good measure. Did I mention your only time off revolves around taking care of your charges needs, too? Sometimes, it can be extremely overwhelming and a bit suffocating. When you can’t get anything accomplished around the house because your charge won’t let you out of their sight. When you have a hundred things to tend to but you are cleaning the bathroom for the fourth time that day. That’s when the “burnout” begins.

Here’s a “catch 22” for you: Dad is doing so well with meeting the goals that home health set for him, they may have to release him. These companies exist to help keep people out of hospitals. Medicare figures it will be way cheaper in the long run to keep you healthy (or as healthy as you can be) than it would be if you were hospitalized. They are, of course, right in this assumption. In order for him to be recertified, he has to show a medical need for them being here. Alzheimer’s isn’t a valid reason. The get ladies who come here to work with him have given him a new lease on life. The interaction with adults outside our household is such an important part of his mental health. In his eagerness to please, he does everything they ask him to. Unfortunately, on paper that means he is getting better physically so they may have to stop coming. If he were to get sick, fall or injure himself, he would instantly be recertified. See, we are stuck between a rock and a hard place. The last thing anyone wants, least of all me, is for him to get sick or injured. I don’t want that as much as I don’t want to lose the additional help with him.
I think there should be a new study done on “caregiver burnout”.

I would be interested in knowing how much money is spent on caregiver healthcare each year. What percentage of that is Medicaid (or Medicare) dollars? Could there be less money spent in this area by providing more services such as home health to help alleviate some of the stress that caregivers deal with? Stress can lead to physical illness. I can’t afford to get sick or more levels than you can even begin to imagine.

As time goes on with his illness, things will only get worse. It’s the nature of the disease. We will float on the fringes of the healthcare system. Sometimes we will have help and sometimes we won’t. This will continue until the day arrives where I have no option but to call in hospice. Then, we will finally have available help that will stay with his case until the end. Unfortunately, that’s the way the system works, you have to be dying to get as much help as you need. I am grateful for what Medicare does do. But, to be honest, I’m pissed off at what it doesn’t do.

It seems like the contributing factors to “caregiver burnout” are endless but I keep reminding myself that I wouldn’t like the alternative any better. Mostly, I’m just mad at the disease and what it does to everybody who is touched by it. Knowing that I have a RIGHT to feel the things I feel helps a lot. Knowing that I have a support system of friends and family who lift me up helps me keep going. Knowing I will survive? That is the key to not losing my mind completely.

Sunday, July 22, 2012

On The Subject of...

ON THE SUBJECT OF SKILLS: My 13 year old has proven just how big his heart is lately, not to mention how sharp his mind is. He frequently asks Dad to play cards with him. It has been a long acknowledged fact that “Pop” loves Gin Rummy. He and his “bride” played almost every day of their last few years together (and a whole heck of a lot of days over their lifetime together). Jordyn uses it as a way of connecting with him. When he can manage to get him to play, he has Pop keep score on the pretense of needing him to teach him how to keep score. This is a wonderful move on Jordyn’s part as it requires Dad to use his mind and his forgotten math skills while interacting with him on a one-on-one level.

Over the course of their two most recent games, I have seen Dad remember the rules, as well as accurately keep the score. He makes the same comments over-and-over again but Jordyn just smiles and nods. It really tickled me to hear him say, when laying a Queen down, “Look, Pop, it’s a lady.” He winked and said, “The lady is a tramp, right?” It was great seeing him turn the familiar words back to Dad, but it was even better seeing Dad light up at hearing the familiar words. As he is apt to do, he broke out in full singing voice, “That’s Why the Lady is a Tramp!”

***A sidebar: Dad will also burst into singing an old song “"APALACHICOLA, F-L-A!" that was written by Bing Crosby back in the 1940’s if anyone mentions the word Apalachicola. Richard loves to find ways to bring it into conversation just to hear his dad sing.

However, it was sad to hear Dad ask halfway through the game, “Who are you? Where did you come from?” Jordyn never missed a beat as he patiently explained, “I’m Jordyn. I’m your great grandson.”
Dad immediately said, “Sure you are. I knew that. Where do you live?”
To which Jordyn answered, “I live in the bedroom at the other end of the hall, Pop. Now, whose turn is it to deal?” The way he got him off the unsettling subject showed a maturity beyond his years. The patience he shows, most of the time, makes me proud.

I sometimes question the wisdom of raising a child in this unpredictable environment. But, every time I do, I stop myself with the realization that Jordyn is loving, compassionate and patient. He is learning to be even more so BECAUSE of the environment that surrounds him. The lessons he is learning are no less important than the ones I am learning daily, that all of us who live here are learning. I choose to believe he is going to be a better adult because of it all.

Now, ON THE SUBJECT OF MONEY… it has been an exhausting week. I was treated to a tantrum (otherwise known as a “fit” by us Southerner’s) a few days ago, the likes of which, I had never seen before. Dad decided he wanted me to cash a check for him. I asked him how much money he wanted me to get and he replied, “$5,000”. I told him that was an awful lot of money and asked what he needed it for. He was instantly enraged and rose shakily from his chair. He asked rather heatedly, “Is it my money? Can’t I have some of my money if I want it? Do I have to tell you everything?” He stomped his foot several times for emphasis as he went on, “I want some money in my wallet and if I want enough to look like a big shot then I should be able to get it. It’s none of your business why I want it. It’s your job to do what I tell you to and I want you to get me some money!”

I went into instant placation mode. I told him I would be happy to go cash a check for him the next morning because the bank was already closed for the day. I pointed out that I thought $5,000 was an awful lot of money to have to keep up with and that it might be better to get less. This began a war of negotiations that lasted more than 20 minutes. In the end, we agreed he could have $400 and he signed the check made out to “cash”. It remained a constant subject for almost 2 hours (until I finally left for work).

The following morning, I went to the bank and cashed the check. As soon as I walked in the door, I gave him the money. He made a big deal of folding it and sticking it in his pocket. I could tell he was completely confused but Richard was in the room and he tries not to discuss money in front of anyone but me. As soon as he finished his breakfast, he sat down his recliner and spread the money out on top of his newspaper, calling for me (though I was only 8 feet behind him). I sat down beside him and suggested he put the money in his wallet so it wouldn’t get lost.
He rolled his eyes (that and “Whatever” are 2 of his habits that drive me crazy) and asked, “Why did you give me all this? I don’t understand”. I reminded him that he wrote the check the previous night and had asked me to cash it for him. “But, I don’t need any money. Why would I ask you to get me $100? I don’t go anywhere so I don’t NEED any money.”

“Um, Dad, there is $400 not $100.” I counted out loud as I separated it into 2 piles one had 2 one hundred dollar bills and one had 10 twenties. He pushed my hands out of the way and gathered the money up. He painstakingly attempted to count it himself, separating it into 2 new piles. After a couple of attempts, he had a hundred and 5 twenties in each stack. Getting frustrated because he couldn’t accurately count it, and because he couldn’t remember how much it was supposed to be, he folded the piles up putting one in each of his front pockets.

He started to rise from his chair. I put a hand on his back to steady him and gave him a slight nudge while I suggested he put the money in his wallet so it wouldn’t get lost. “I have to go to the bathroom,” was his reply. “I will do it in a minute.” I am pretty sure, as he left the room I may have rolled my eyes.

When he came back 15-20 minutes later, he had money sticking out of his pocket. I reminded him he needed to put it in his wallet. Obviously exasperated, he pulled the money out of his right pocket as soon as he sat down. “Where did that come from?” he asked. I again explained that he had gotten me to cash a check for him. He pulled his wallet out and started to put it away. I suggested he put the rest of the money up, too, pointing to his left hand pocket. Confusion reigned supreme as he finished putting up the money in his hand and then dug in the other pocket. “I don’t have any more,” he said, reaching to put his wallet up. I turned to him with battling senses of alarm and resignation, “Dad, you divided the money in half and put it in both your front pockets before you went to the bathroom. Remember, I suggested you put it away in your wallet? You said you would AFTER you went to the bathroom?”

He looked at me like I was crazy, “Sweetheart, I don’t remember any such thing. I don’t even know why I have all this money.” The whole time he was talking, he was turning all his pockets out. Sure enough, he only had half the money! I assured him I would look for it and took off down the hall. I went to the bedroom and looked everywhere I could think of. I went to the bathroom and looked everywhere I could think of. I got on my hands and knees and looked under everything I could think of. I looked in, behind, and on top of everything I could think of. Alas, the money was nowhere to be found. The whole time I looked, I could hear him mumbling to himself in the other room. As I got closer I could hear him saying, “I’m going crazy. I don’t understand any of this.” As I stepped into the room, he looked at me on the verge of tears and said, “I don’t even remember what I lost!?!”

I assured him it was ok. I patted his hand and told him not to worry about it, “I’m sure it will turn up, Dad. These things have a way of working themselves out.” Then I turned the TV on and asked if he wanted a Coke. By the time I returned with it, he had obviously already forgotten the entire incident and peace was temporarily restored.

Three days later and I still haven’t found the money (still haven’t found the partial bridge he lost 4 months ago either). I am starting to think he may have flushed them down the toilet by accident. Yes, his teeth and the money. Maybe I will find the teeth someday. Maybe I won’t. Maybe I will find the money someday. Maybe I won’t. All I know for sure is we are at a point where I can no longer let him have his way about certain things. Battle lines seem to need to constantly be redrawn.

Today, he pulled out his wallet and wanted to know why he has so much money. I gave him an abbreviated version and then pulled up the image of the actual check on our bank’s website so he could see that HE wrote the check. He was greatly disturbed by the whole situation. It must be so hard to hold your head up when being confronted with your own actions. But it must be even more so when you can’t formulate a single glimpse of a memory regarding it. After several tense moments, he asked if maybe we should do something with all the money in his wallet. He suddenly realized that he might lose it.

Making a quick decision, I got smart. “Hey, Dad, why don’t you keep 2 twenties and 2 ones and I will put the rest back in the bank? If you run out of money I can always get you more. How does that sound?” The instant he acquiesced I removed the extra money and put it safely away to be taken to the bank tomorrow. I will always wonder if the teeth will turn up. I will always wonder if the money will either? I will always feel a sense of accomplishment when a crisis is averted with Dad. I will always wish they could be avoided altogether. And, without a doubt, I will always, always hate this disease.

Sunday, July 8, 2012

Don't Let the Sun Go Down On Me

Elton John wrote the music for and sang "Don't Let the Sun Go Down On Me", Bernie Taupin wrote the lyrics. For a couple of months now, I have found myself singing this tune in my head daily as the sun slides lower into the western sky. It could so easily be the theme song for Sundowner's Syndrome. The only line that doesn't fit is "I can't find, oh the right romantic line". Here are the lyrics. See for yourself what I mean...

I can't light no more of your darkness
All my pictures seem to fade to black and white
I'm growing tired and time stands still before me
Frozen here on the ladder of my life

Too late to save myself from falling
I took a chance and changed your way of life
But you misread my meaning when I met you
Closed the door and left me blinded by the light

Don't let the sun go down on me
Although I search myself, it's always someone else I see
I'd just allow a fragment of your life to wander free
But losing everything is like the sun going down on me

I can't find, oh the right romantic line
But see me once and see the way I feel
Don't discard me just because you think I mean you harm
But these cuts I have they need love to help them heal

I don't think I will ever hear it again without thinking of all the people who suffer from a syndrome that is still a HUGE medical mystery. I know I will always think of Dad in particular.

Recently, I was running late getting dinner on the table one evening. As we sat down, Dad and I, I noticed that the shadows in the room were longer than usual and that Dad was moving a bit slower than usual. As the meal progressed and the darkness outside began to close in, I was startled to see Dad deteriorate right before my eyes. He became increasingly more confused. His ability to find the right words to express his thoughts became rapidly nonexistent. He began to tremble and had great difficulty getting his fork properly up to, much less into, his mouth. By the end of the meal, he was beginning to drool and could not rise from his chair by himself.

Normally, by that time of night, he is either dozing in front of the T.V. or he's already in bed. Perhaps that's why I had never seen such a dramatic downward spiral. Actually, that isn't true. The only other times I had seen anything like it were times he was hospitalized. He suffers from Hospital Psychosis as well and the Sundowner's is markedly worse when he is institutionalized. At least when he is there, I can leave the worst of it to the medical personnel. At home, it's just us, and we have to get through it the best we can. In general, things are getting worse so it stands to reason this would as well. We are both frozen here on the ladder of our life.

If you would like to read more about Sundowner's Syndrome try