Tag Archives: aging

Alzheimer’s Hypochondriasis, The New Fear.


Years ago, I was talking to my father and listening to him complain about misplacing his keys or forgetting to do what he considered a daily task. It worried him. He believed it was an indication of brain degeneration. I thought he was being silly because “everybody forgets.”

A while back, I found myself plagued with fear about my own cognitive health – a concern that has continued. I could not, for the life of me, recall someone’s name, someone I’ve known for over six years. I was blank. I picked up my phone to look through the contacts and thought, “I bet her name is at the end of the list,” so I reversed the order of my search and started in the V’s. Her name is filed at the beginning of the alphabet. Being wrong made the feeling worse.

I was horrified.

When JHP, JR was alive I called my forgetfulness “Vicarious Dementia” and pass it off as no big deal. This bit of forgetfulness where I couldn’t pull someone’s name from anywhere in my brain scared me more than forgetting one of my daughters’ many activities, or to call back a friend. This event scared me because as hard as I tried to remember the name, it was gone.

Of course, this got me to thinking about my own situation and what I would do if I was struck by dementia. I realized I’ve been taking steps, somewhat unconsciously, to lessen the likelihood that I will be in the same situation my father is in.

  • I rarely drink anymore.
  • I’ve upped my vitamin regimen to include nutritional supplements that work on the brain and memory.
  • I exercise almost every day. Injuries and illnesses are the only things that stop me.
  • I quit smoking.

These are things that normal people do normally, right? Up until a few years ago, I took my long-term health for granted thinking I was nearly invincible. Life changed and I began doing unhealthy things in reaction to my new life circumstances. My current life choices are both a response and a reaction to seeing what my father went through. And, as one dear friend says, I’m not a good drinker and my body lets me know how much it dislikes alcohol. While I have been secretly freaking out about what my situation might be like when I’m older, it turns out this is a worldwide fear. Out of the blue, I received a note from a good friend that included a link to a NY Times article entitled, “Our Irrational Fear of Forgetting,” by Margaret Morganroth Gullete.

If We Could Make Just One Sound At A Time…


One of the issues my father struggles with is the inability to sort through the various stimuli in his environment, especially auditory. I believe this is a form of sensory processing disorder that accompanies vascular dementia. For example, if I am talking to him while my daughters are having a separate conversation in the same room, and his dog is “requesting” a treat, dad will either struggle to figure out what words were intended for him or he’ll close his eyes, grimace, and shut himself off. Since I only play a dementia specialist on the Internet, this is a somewhat-educated guess via online research that tells me he very well may have auditory integration issues.

While I don’t understand all the physiological reasons for this inability, it makes sense to me that strokes and alcoholism have impaired portions of his brain that would otherwise be able to differentiate, tune out selectively, or just hear it all and know it. As I watch my father’s responses, or lack of response, it’s becoming more apparent that busy environments are extremely challenging and frustrating for him, if not painful.

Part of me wonders if this issue hasn’t always been there in a milder form, and if it’s been exacerbated by the damage to his brain. I say this because I remember some of his behaviors during my younger years that may have been indications he had issues with auditory stimuli. I’ve also found that, with age, I struggle with feeling over-stimulated by lights and sounds, especially a combination of them at higher intensity. Frankly, I have trouble writing with any noise other than bird songs in my immediate environment. Just ask my kids.

I’ve often watched Dad cover his head, eyes, and ears with his arms and hands as if he’s in pain. I’m beginning to realize he may be trying to shut out some of the stimuli. Ever since mom died, he’s had a tendency to be reclusive, but now these changes in his brain seem to have made it physically painful for him to be in the presence of more than just a few people, especially if those people aren’t aware of his issues. At most, he seems to be able to manage having my two daughters, the dog, and me in his presence at the same time. In any other situation that would be too much for him, but I think the fact he enjoys hearing kid-noise makes it less painful for him. In fact, I think he enjoys listening to their chatter more than he does talking to me.

Wednesday, I visited Dad during lunch time. A very talkative man was sitting at the same table.  Initially, I tried to focus on dad, but this white-haired little guy kept talking to me. He’s just a talker. He’s a sweet man, too, and I do love seeing him.  So I spent most of the meal chatting with this gentleman and trying to bring my father in on the conversation.

As usual, Dad barely said a word. Every time I spoke to my father, the other gentleman spoke. Dad turned toward me, looked at me, closed his eyes then turned away without giving a verbal response. This may have been because Dad’s attention was immediately drawn towards the other man’s words and my father was then unable to get back to his thought . It may have been his frustration with being interrupted. I honestly can only guess because he didn’t speak.

JHP, JR and my daughters

On the other hand, it’s a completely different experience when Dad spends mealtime in his room with one voice speaking at a time or music playing. Wednesday evening, my daughters and I packed up our usual treats for dad and treats for his dog, along with my eldest daughter’s violin and my other daughter’s recorder. Dad was asleep. When I woke him up to announce our arrival, he was thrilled the girls were with me. I decided we would all sit together in his room while he ate, so he could interact with his granddaughters without being interrupted by other residents who love seeing my girls.

These really are some of our best visits with him, even though there is very little conversation. My oldest daughter played her new violin. My youngest daughter filled a plastic glove with water and drew a face on it. I worked on putting out chocolates for dad, putting away the remaining candy stash, and getting the dog treats put away.

Playing violin for Grandpa

Hardly a word was spoken the entire time, but Dad tapped his foot. He bobbed his head. It took me a while to realize what he was doing because I was concerned he was falling asleep and his dog would catch the sandwich as it hit the floor. As I watched to make sure Dad didn’t drop anything, I noticed he was intentionally bobbing his head to the music. When my daughter fumbled through a new piece of music, he popped his head a little more obviously. That’s all. He bobbed his head, he tapped his foot, and he listened to her play violin. He was being her metronome.

Later, as usual, silliness took over. My youngest did her circus act on his walker, jumping up and down doing her version of a “walker dance.” Then my older daughter jumped in and did some of her new Hip Hop moves. Dad smiled and clapped his hands, and he made it very clear that he likes it when the girls are silly and talkative. It’s like they are on stage. He gets to watch and even if he doesn’t understand exactly what they are saying, he can tell they are having fun and that they are doing it for him.

It’s such a different experience from spending time with him in the common areas of the facility.

This makes for a challenging situation, though. While I want him to be around people, I don’t want him to be miserable or uncomfortable. I want him to interact with people, but I prefer he interact with people who are sensitive to this part of his struggle. I’d love for the facility where he lives to have an employee designated specifically for people like my father who can’t handle being in the common areas, just to fill the gaps since families can’t be there all the time.  I’d like for all elder care facilities to have that service available to those more reclusive residents. But for now, the focus of our visits with Dad is to give him that type of interaction that seems to work best for him.

I think my daughter put it best. “Grandpa isn’t deaf. He hears everything all at once. So we have to make noises one-at-a-time.”

An Open Letter to Caregivers


Dear Caregivers,

You aren’t paid very well. In fact, most of you probably aren’t even paid living wages. You are overworked and overlooked. Despite your low wages, despite the lack of recognition, you hold positions of power. You hold power over our loved ones much like teachers wield power over our children.

Our loved ones can no longer take care of themselves. Some don’t even know when they need to eat or bathe or get dressed. They may have forgotten the world outside their rooms. Many of them can no longer speak for themselves. Some may try to speak only to find they have no control over which words come out of their mouths.  Many of them don’t even remember what you did to them or for them an hour ago. This gives you awesome power.

Those of us who need your help with caring for our loved ones need to be able to trust you to use that power with honesty and compassion. It is important that you understand their vulnerabilities are not weaknesses. Their vulnerabilities are your opportunities to improve another person’s life. Please respect our loved ones, their homes and their property whether they live in old houses or special facilities. Please respect our loved ones’ lives. Please be reliable and trustworthy; help your charges enjoy their final days, months, or years with some sense of dignity.

Please treat our loved ones the way you want to be treated when it’s your time to rely on strangers for daily care. See the importance of your work. Your presence in their lives holds so much potential value. Please strive to realize that potential by giving them something to be happy about when all else seems lost.

The fact many of our loved ones are unable to recall a visit, a joke, a family member does not mean they are ineligible for the opportunity to create new memories. If you sit with them, hold a hand, tell a joke, kiss a forehead, or share a story from your life, you are giving them something of value: your time, your attention, you. Even if they don’t remember the encounters, you still leave a mark within them.

JHP, JR, his mother, father and friends celebrating his graduation from OCS.

These men and women had full lives before you met them. They had careers, families, tragedies, successes. They fought in wars, in courts, in protests to afford you the possibility to live the life of your dreams. The life of an 89-year-old patient reaches beyond what you have read in history books. What you learned about the Great Depression, they lived. What your teachers told you about rations during WWII, they experienced.  These men and women were teachers, mothers, fathers, ministers, architects, entrepreneurs, survivors, farmers, attorneys, engineers, Girl Scout leaders, Cub Scout leaders. The vast majority of their parents had to fight for the right to vote, own property, attend school. These men and women voted for presidents you’ve only seen in books.

JHP,JR. and friend at CCC. Golf was his second love. Mom was his first.

If we take the time to tell you our loved ones’ biographies, please listen to us. Stand in awe of their accomplishments, trials, survival. If we don’t tell you details about their human experiences, feel free to ask. Feel free to show interest in who they were and how they got where they are. Don’t ever assume these older adults were anything less than productive members of our society. The person in that wheelchair is as important as your father, your mother, and your grandparents.

Please keep in mind, their value as humans shouldn’t be judged by the number of visitors they have each week. Their value as humans shouldn’t be judged by what they know about the world as it is today. Their value as humans is in their history, what they’ve done for friends and family. Their value is that they are still here, existing rather than living because they have no other choice. They rely on caregivers to help them make it through another day, in a long history of days, with some semblance of dignity and happiness.

While so many people strive to “live in the moment” that is where our loved ones often stay, without choice. They exist in their perceptions of this very moment which may be 1944, or 1955, or 1984. This very moment might be their cage. This very moment may provide shelter from the states of their lives. Please help them feel as if they are living in their moments with dignity. Please give them reasons to feel safe, secure, and important, even if it’s just for that one, brief moment. Please take good care of them.

Yours in compassion,

Lucy
Jerome’s Daughter

The Mind: An Amazing Piece of Bio-Electronics


First, let me say I am overwhelmed and humbled by the response to yesterday’s post after being “Freshly Pressed” on WordPress.com. I found it hard to breathe for a couple of hours yesterday morning, because it suddenly dawned on me that, wow, a lot of people have been and are in similar situations. We need support. We need to feel heard and we want to talk about our loved ones. So, please feel free to send me any personal stories you are comfortable sharing, or suggestions for upcoming posts. I know that a single day as Freshly Pressed does not an Oprah-worthy blog make, but I do hope you will continue reading and sharing stories. We can all help each other.
Thank you,

Lucy

Long ago, when I was a student at UNT, my Abnormal Psych professor  was explaining what was then known as Multiple Personality Disorder. He said, “The mind is one of God’s greatest gifts. Look at what it will do to keep us functioning.” At the time, his statement made some sense to me. Over the years, however, it began to make more sense as I realized some of the security work my mind had managed in order to keep me going. Then, a couple of weeks ago, I was reminded what an amazing bit of bio-electronics we humans possess when I witnessed dramatic changes in my father after he fell, hit his head, and ended up in the emergency room.

It’s important to note that for the last two or three months my father had gotten to the point where he barely spoke. When he did speak he rarely completed a sentence. This change has been emotionally challenging for me because it’s been so dramatic. Back in the day, dad was a master of the English language, and during the last few months, I couldn’t even piss him off enough to make him talk. Frankly, as anybody who’s ever known my father will attest, he never shied away from expressing his anger. Never.

Anyway, I believe it began during the wee hours  of Monday, April 4. My ringing cell phone woke me up from a dead sleep. Initially I didn’t answer because I really just wanted a good night’s sleep. Then, I realized the only calls that ever come that late at night are either drunk dials or bad news. Of course, it had to be bad news. So, instead of listening to the voice mail message, I called back the number on caller I.D.

“Autumn Leaves.”

“Oh hi. Um..I’m Lucy…somebody called..I’m Mr. Parker’s daughter.”

“Oh Lucy! I’m here with your father. He fell and hit his head. The ambulance is on its way to take him to the hospital.

“Oh! Umm…Do I need to go, too?”

For a few minutes, the caregiver dealt with a very sleepy, uncertain, and not-so-bright daughter trying to wake up enough to understand what was going on. Eventually, I apologized profusely for my dimwittedness and said I was on my way to the emergency room to meet my father.

JHP, JR. letting everybody know he is okie dokie.

It may have been her professional wisdom that kept her from describing the scene. I don’t know. Honestly, I’m glad she didn’t warn me about what I would see when I got to him. I was also thankful for my father’s poor vision because it meant  he couldn’t see the change in my expression when I saw him covered in blood with a blood-soaked turban-like bandage wrapped around his head. His face was covered in blood. His hands were covered in blood. His shirt was covered in blood. All I could say to him was, “Hey Dad! It’s Lucy. I’m here. Wow, you sure made a bloody mess.”  Thank God he saw some humor in my less-than-graceful entrance.

Dad was happy to see me, but he was sleepy. The lights were bothering him because, not only were they really bright, he just wanted to sleep. He was also annoyed by people talking loudly and RNs calling him “buddy,” otherwise he said he was fine. This was surprising considering his appearance. He ended up getting about 20 staples in his head. All the tests came back okay, no concussions or broken bones. And I had a chance to flirt a little with a doctor and a muscle monkey RN. Of course, Dad gave me the evil eye for it because I was doing it on his time.

“Dad, next time you want to work on introducing me to a nice doctor, try a dinner party, not a head bashing, OK?” Thankfully, he was again able to see the humor.

All in all, it was only about four hours and a few office supply jokes before he was back in his own bed, and we were done with it.

Actually, no. We weren’t done. We weren’t done at all. The most amazing thing was about to happen. Talk about throwing me for a loop!

I visited dad later that day after I took a little nap, and every day after that for about a week. The first visit, he was understandably tired. Still, he wasn’t in any pain, but he was surprisingly alert. He was coherent. He even talked in complete sentences.

The next visit, he was still surprisingly alert. He was still coherent. He was still speaking in full sentences. Okay? Wait. As I was able to set aside the worry, my brain started to function again and I began to catch on. He was speaking to me…in full sentences…for the first time in a couple of months. Granted, it still took a while for him to form the sentence in his head and then send it out his mouth. And, yes. It took me nearly 24 hours to realize that I was once again having full conversations with my father!

He began questioning me about conversations we’d had 8 months ago and asking if I followed through on some things. He berated me when I told him I did not. He asked about my daughters. That question alone was significant, because he actually remembered them. Better still, he asked about my daughters by name. He asked questions. I answered. He laughed. I laughed. I asked about his head. He got mad at me for worrying. I told him, “Tough <expletive deleted>, dad. I’m gonna worry because that’s one thing I’m very good at.” He laughed because I cursed.

“Dad, this is amazing. You’re talking to me. You’re bitching at me. You haven’t finished a sentence in months and look at you now! I swear to you, if I had known a good whack on the head would get you back for a day or two, I would have done it months ago.” Again, he laughed. Then, he said,

“Really? I wasn’t talking to you? Are you sure?”

“Yes, Dad. I’m sure. Please tell me you see why I’m laughing about you questioning my memory.”

He laughed again.

Yes. The fun did come to an end the next day when his blood pressure dropped and he stared at me from his bed unable to tell me what was wrong, but generally he’s okay. We can still sort of talk, but he’s slowly going back to being nearly silent. It’s no longer the I-fell-in-a-vat-of-toxic-waste-and-became-super-human stuff we had for a couple of days, but that’s okay.

As I’ve recounted this story to professionals, nobody has been surprised by the changes in my father. Apparently, it could have gone either way. The head bashing could have made him worse. Alternatively, it could have made him seem better for a few days, which, lucky for me, it did. I think I was lucky that I had a chance to experience what I call my New Dad again. I’m not so sure he was lucky, though. Even though we were able to talk and argue and laugh and joke and swear at each other, he also re-realized his life is very different. But there was a brief moment when he looked at me the way blind folks look towards you but not really at you. In that moment, I knew he knew I am just as surprised as he is by how well we get along and how much we count on each other, each in our own special way.

“Whodda thunk, Dad? Let’s just enjoy this while it lasts. I’ll be back. The girls will be back. We’ll visit you. And if things change, I’ll still visit you. I’ll still worry that I’m gonna piss you off, and I’ll tell you stupid jokes.”

“Oh no! Not more stupid jokes!”

“Whatever.”

So, this is how I came to realize, once and for all, the mind really is an amazing piece of bio-electronics.

Lucy
Jerome’s Daughter

My First Encounter With Dementia: Daddy Pat (Part I)


Some people may claim they had the best grandfathers in the world, but I really did. Wylie Patterson, aka Daddy Pat, was an old country boy who farmed, worked at a cotton gin, and then went on to work at the Panama Canal until literally 3 months after I was born. He was, and remains, the best man I’ve ever known.

Mommy and Daddy Pat celebrating their 50th wedding anniversary, 1973

To say that I was lucky to have spent so much time with Daddy Pat feels funny to me because of the reasons behind our frequent visits. My mother was diagnosed with colon cancer when I was seven years old. She spent the remaining two years of her life in and out of the hospital, fighting the good fight. Thus, Mommy and Daddy Pat became very important adults in my life not only as grandparents, but also as caretakers. I spent many nights at their house when I was sick so my father could go to work.

It was during these “live-ins” that I really learned about the man my grandfather was. He used to quietly wake me in the middle of the night so we could sneak into the kitchen and eat Mommy Pat cookies on vanilla ice cream. Since he was a man of few words, this was a pretty easy task for him. Others might have called him stoic, but he really wasn’t. He was dear, quiet, sweet, and funny. He was my Daddy Pat.

As I got older and needed less attention, he changed. He slowly became moody. He resisted any and all offers to help with his lawn. He resisted to the point of taking out several of the fruit trees in his back yard. He told me he did it because the trees crowded the yard. Mommy Pat told me he took them out because he couldn’t take care of them on his own anymore and he didn’t want to admit it.

He also became repetitive. He told the same story about cranking up a Model A and nearly breaking his arm. I must have heard the same story about driving the sharecroppers to the fields via a deep dip in the road a million times. “Them older guys knew to hold on. All the new boys would damn near fly out of the bed of my truck!”

Slowly, he became even quieter, less talkative, to the point of near silence. But he always lit up when he saw me. He always hugged me, pat me on the back, kissed my cheek and said, “My girl is here!” (still brings tears to my eyes) Then, he always made sure I got one of the good swivel rockers in their living room. Mommy Pat and I would rock and talk for hours while Daddy Pat sat and listened, smiled and laughed, or frowned and said “Oh no!” (mostly when I spoke about boys)

Then, he’d be back to his old self, or as close as he ever got again. He and Mommy Pat began recounting events during the first weeks and months following my mother’s death. Daddy Pat would say, “Ernestine, tell her about how she’d wait for Joy” (my mother). So, they’d recount the times I stood by their front window, looking outside, for what seemed hours at a time, nearly 10 years prior.

“Honey girl, what you doin’ at that window?” Mommy Pat would ask.

“Waiting for mommy to come and get me.”

Daddy Pat would tell me this story over and over again, then he’d look me in the eyes and do something I’d never seen him do before. He’d cry. He’d say how sorry he was that I had that life. He’d tell me he wished he could have done more for me. We’d spent a lot of time consoling each other and it would end with, “You know, you’re my very favorite grandpa?” He’d say, “I’m the only one you know.” Then we’d agree that’s why I only had one, because the other might have felt left out.

This is when I first notice his mood swings. The man who once only showed a level head around me began to cry and get mad in front of me. Mostly, he got mad at Mommy Pat and his son, my sweet Uncle Sonny.  He usually cried about the fact I was so young when mom died or how my cousin Kenny worked so hard to help his mom, my Aunt Helen, through her battle with cancer. Sometimes it felt refreshing to see these new displays of love and grief, but mostly they confused me. At the time, I had no idea what all these symptoms meant. My grandfather was invincible. The thought his mind was failing never occurred to me.

Then I got that dreaded call from Mommy Pat. At the time, I was living in Denton attending the University of North Texas. She called to tell me she had to move Daddy Pat to a nursing home because “he’s too hard for me to handle on my own. He’s not himself anymore, sweetie.”

(continue reading….)

Mommy and Daddy Pat in the nursing home.

He Said WHAT?!


Dementia changes people. It’s that simple. Dementia tends to shut down the social filters in patients’ brains. It gets confusing because some behaviors are affected by changing attitudes that come with age or the justified anger and frustration about their situation, while other behaviors are the result of the death of the social filter. For instance, a once modest woman may speak more frankly about sex, or a typically assertive man may appear hostile or easily set off.  In both cases it may be hard to tell exactly the cause of the behavior. Knowing which behavioral changes are related to the disease can be challenging, especially for those of us who are emotionally connected to the patient.

My sister and I have experienced this confusion with our father’s behavior. During the course of the last few years, we faced my father’s verbal onslaughts with great frequency. Many of these attacks left me bawling my eyes out in my car. My father still had the attorney in his core, so his ability to argue was still working even if he couldn’t always pick the perfect words. Dad could sling some of the most painful verbal assaults with such power that his words could knock you on your ass. I often gave it right back to him, because I couldn’t sit by and take it. These fights tended to be very loud and peppered by curse words I never knew I had in me.

All of this may sound awful to the outsider. That, I understand. What the outsider doesn’t know is that I’d heard many horrible things from my father for years. What I found challenging about this behavior once he was officially diagnosed with dementia was that, in all honesty, my father really never had a filter. I never knew for sure if it was his true personality, only-child syndrome, drinking,or  depression that caused these emotional outbursts. He was never one to bite his tongue, at least not for the last couple decades. As I got older, moving from my teens to my twenties to my thirties, his filter seemed to all but disappeared. Many times he justified his behavior by telling me I was old enough to hear the truth.

So, when we began getting reports that he had been saying extremely inappropriate things to caregivers, there was a run on opinions by every person involved in his case, and even some who weren’t. Those of us who knew him the longest secretly figured it was just him, but we were reluctant to tell anybody for fear of losing the help we so desperately needed. Others just thought he was an ass and said so. True professionals suggested that it was the result of dementia and his inability to control impulses. Would I hear this and believe it? No. I was angry at him and I was convinced he was just acting that way to affect the people around him without concern for our feelings. Occasionally,  I would I fess up and tell the professionals what I then believed to be the truth. “Don’t kid yourselves. He’s just a <expletive deleted>.”

So, my sister and I had no idea what the proper course of action might be. We felt these outbursts were more about him being demanding and inconsiderate; being typical JHP,JR. We had to do something though, and show the caregivers we were making an effort. So, I called dad’s physician, cried, and recounted some of what was going on in the house. Then, I told him my “diagnosis.” The doctor ended up giving my father an anti-psychotic medication that would hopefully bring and end to those undesirable behaviors.

The medication seemed to help. It was hard to tell because, at the time, my father and I were in the throes of how much we hated each other. This was during one of the first extended episodes where he didn’t know who I was. All he knew about me at the time was he absolutely hated me. Mind you, I was not objective in the least. In fact, I was very judgmental and stuck in emotional quick sand. The caregivers did say they saw changes in his behavior. He still had angry outbursts, but his behaviors weren’t nearly as inappropriate as before. I assumed the medication was doing its work.

Eventually, I attended a support group. The guest speaker was Jane Anderson, co-founder of a Texas-based family of memory care facilities called Autumn Leaves. She offered a perspective that helped me better understand my father, his brain, and the disease by explaining the idea of social filters and how they are affected by dementia.

Basically what Ms. Anderson said was dementia kills the brain’s social filters by damaging the frontal lobes. She likened this portion of the brain to the Miss Manners control center. By shutting down “Miss Manners,” dementia led to a lack of impulse control. This means dementia patients are more likely to act out in socially inappropriate ways.

A-HA! This was new information for me. As I listened to Ms. Anderson speak, all these little bits and pieces of this hugely unorganized mess of diagnoses, emotions, relationships and information began to fit together better than they ever had. And I realized something.

My father had been suffering from the effects of dementia far longer than any of us ever suspected.

This knowledge changed so many things for me. I no longer got AS angry when my father said mean or hurtful things. I also learned that I could bite my angry tongue but free my rational tongue. This knowledge made it okay for me to tell dad what I thought of what he was saying. I finally gave myself permission to respond to him rather than to react. I began to have a better understanding that many of these behaviors were beyond his control, and probably had been for years.

Another insight I gained was that some of these “inappropriate” behaviors were manageable through distraction, redirection and staying busy. Eventually, we moved dad to a Ms. Anderson’s memory care facility and agreed to take dad off the anti-psychotic medication. We were pleasantly surprised to see positive changes. As far as we know dad has not behaved inappropriately thanks to proper care, educated caregivers and our better understanding of the disease.

These A-ha moments helped me tremendously. And by helping me, I’ve been able to better help him. I’m a better caregiver because of this knowledge. I’m also a better daughter. Funny what a little information can do for a person.

NOTE:
In honor of JHP, JR, retired Attorney-At-Law, who taught me to CYA, I offer readers the following disclaimer:
Please do not mistake any of the information on My Father Doesn’t Know Me as medical or therapeutic advice. All of the information contained in this site is based on Lucy Parker Watkins’ experiences, personal research and advice she received during the course of her father’s treatment for dementia.

The Paid Caregiver Dilemma


So, you’re spent. You’re done. It’s gotten to the point where you are drowning in the needs of your loved one. You’ve tried to hold on to some sense of a balanced life and sanity while being the primary caregiver, but at some point your loved one’s needs and emotions become too much for you and you alone. At some point, you have to face the fact that your needs must also be met in order for you to keep up the hard work. This is when you realize it’s time to get outside help. What do you do? Who do you call?

The challenges faced during this new stage of care can come as a surprise. Eager for help, for some relief, you set off to find the perfect home health match. Then, you see the prices they charge, the rules they have, the limitations, and after listening to sales pitch after sales pitch, it’s becomes even more confusing. When the reality of the caregivers’ skill sets, demeanors, attitudes, and understanding of the disease become apparent, you might find yourself sorely disappointed. Even though you will easily pay $240+ per day for full-time care, the discrepancy between what you pay and the quality of care your loved one receives may begin to feel like a vast chasm full of contradiction and disappointed.

I am not telling you this in an attempt to sway you from your decision. I’m telling you as a warning, so you won’t go through what I went through with paid caregivers.

As you begin to look for an agency, here are a few things to keep in mind.

Ask for other family caregivers’ opinions about agencies.
If you attend an Alzheimer’s support group, ask around. If you know anybody in a similar situation, ask them about the agencies they used, liked, reported, etc. And remember, something they claim is wonderful about an agency might not seem so wonderful to you. Just hear the person out, then ask clarifying questions.

Check with your state’s Department of Aging and Disabilities or Health and Human Services Departments.
Your state may have a different name for the department that tracks home health agencies. Always check with these departments before signing a contract with a home health agency. Most states will list each agency’s “grade” and violations, if any. What may seem like a small violation to you now may later serve as proof that caregivers don’t properly track their daily activities with patients. This could become an issue later on.

Everybody you contact will probably tell you their agency is staffed with “Alzheimer’s Experts.”
Here’s the rub, Alzheimer’s is NOT an accurate term for all dementia patients’ diagnoses, it’s just one of the more recognizable terms associated with dementia diagnoses. Additionally, while caretakers absolutely must have a deep understanding of dementia, they must also be willing to become experts in your loved one’s situation. We used to tell caregivers, “I want you to have a PhD in JHP” (my father’s initials). If you find an agency with a good combination of knowledge, mixed with loads of compassion and integrity from the top down, hang on to it.

Finding a good home health agency for caregiver staffing is much like finding a childcare provider for your first child.
It’s a challenge to find the values, compassion and attitudes that you want in your loved one’s home. You have every right to be as picky as you were when you sought out a caregiver for your first child. You might know what you need/want in the beginning, but then you will go through the experience and you might begin to realize other things you and your loved one need/want. And dementia has its ebbs and flows, ups and downs that almost seem cyclical in nature. It’s good to plan ahead and find someone who can provide services when your loved one’s worst symptoms. Fine-tuning takes a while.

Managing caregivers can be one of the most infuriating and frustrating jobs you’ll ever have, but it doesn’t have to be.
You listened to so many higher-ups at so many agencies work their promotional magic that you became hopeful, oh so hopeful, that when you finally hired an agency they would have the best caregivers for your loved one. But, now it’s time for the experience. After awhile you may find yourself wondering if the company’s mouth piece told the caregivers all the rules/policies/promises they told you. Sometimes it won’t match up. Why? Because home health agencies (or nursing homes, etc) are only as good as their worst caregivers. And unless the agency does regular surprise, on-site visits to patients’ homes, they’ll never know for sure what is going on.

I highly recommend giving everybody in the agency, from the top down, the same information about your loved one’s symptoms, preferences, habits, likes, dislikes, etc. Put it in writing. List the rules and regulations of the home. You will basically be training new caregivers and checking in on them. Read their notes. Pay attention to the “feeling” in the room. Note how much attention each caregiver seems to need from you and your family. If and when a problem does arrive, utilize the home health agency’s specific protocol for handling complaints or other issues. Follow that protocol. Don’t take it all on yourself. Let the bosses do the work and hold those bosses to their promises. Keep the agency accountable for their employees. Otherwise, you will get exhausted. I promise.

And finally, make sure to have clear boundaries with caregivers. It’s easy to fall into feeling like they are part of your emotional support network. This leads to blurred lines in the professional relationship. Just be careful with this.

Most caregivers are paid just a little more than minimum wage.
This is part of the discrepancy between what you pay out weekly and the quality of care your loved one receives. Yes, the bill may translate to $10 per hour, but that full-time care adds up to $240 per day, $1,680 per week, approximately $7,200 per month and/or $87,600 per year. It’s very challenging to see the amount due on each monthly bill and not expect high quality care.

Sadly, in my experience, good in-home caregivers were few and far between, despite the enormous fees. The caregivers usually weren’t “trained,” but were tested over dementia materials they read upon being hired. The practical experience was usually lacking, although they all told us things like, “I worked for Mr. Peabody for 12 years and I treated him like he was family.” Yes….caregivers told me similar things many times. We’ll go over the problem with those kinds of statement on another day.

There was always something with the caregivers, and usually it went beyond to a lack of training or understanding of the manifestations of the diseases, and the lack of basic common courtesies normally extended to others. We had missing money which led to an “accounting system.” There were long distance phone calls on the land line that did not have long distance which led to a large note taped on the phone saying “Do NOT Use.” We had notebooks of information that very few caregivers read. We had caregivers who claimed to be “experts” that judged our father for typical dementia behaviors AND who worked on his feet even though he had an amputated toe. (FYI…ElderCare 101: ONLY podiatrists work on elderly people’s feet….period.) There were many more issues that arose during the course of the 2 years our father remained in his home, and while those listed may seem minor, when added up it was a whole new set of stressors.  Even though it was nice not to have to be at his house everyday, I lost sleep to worry about my father’s health and well-being.

The more they toot their professional horns, the more closely you might want to watch them.
This one tip comes from time after time of listening to “professionals” at various levels of management in home health care agencies talk about how wonderful they were and how highly trained/skill/perfect they were with “Alzheimer’s” patients. Those people who did this the most were usually the least capable. I got so tired of people telling me about all their experience/expertise that I began to tell them, in a not-so-friendly tone, “I really don’t care to hear a verbal CV. Just show me what you got. If you can show me that you are an expert, then I’ll believe you.”

Nearly across the board, the folks who tooted professional horns had little to show in terms of insight into my father’s diagnosis. Over time, I learned to see that behavior as a bright, Garrison-sized red flag and would nearly immediately write off that person as a potential caregiver for my father, and call the respective agency to find a more suitable match.

Unless you have nanny cams in every room, you will have to trust the caregivers’ notes and explanations.
Always read the caregivers’ notes. Check to make sure they are following the rules. Pay attention to the lists of foods prepared, the medications given, the number of baths per week. If a caregiver isn’t keeping notes, make sure to tell the agency.

The beauty of caregivers’ notes is that they do tell a story even when the caregiver isn’t leaving any. You may find complaints/excuses/or interpersonal issues in the caregivers’ notes. Also, make sure to check with the agency on their policy about caregivers’ notes. Does the agency leave them in the home or file them in the office after a week? Will they leave copies of the notes for you? Find out the answers to these questions and then do what you can to make sure you always have copies for yourself.

Also, most likely, you won’t be at your loved one’s side day and night. There may be times when your loved one may claim certain things are happening which may seem absurd to you. Read the notes. It’s hard to hear a loved one’s complaints, dismiss them as symptomatic of dementia, and then find out the claims were not true. The reverse of this can also happen. Notes, even minimal notes, can show information and attitudes. Some caregivers may tell on another caregiver in the notes, but not in person.

For instance, our father claimed one caregiver was abusive towards him. I honestly discounted my father’s claims because I was convinced he was being racist and sexist. Then, two other caregivers witnessed the young man verbally abusing my father. I became much more open to my father’s claims after that, and in hindsight there were indications in the caregivers’ notes that I just hadn’t noticed before.

This is also why it is so very important to make sure you trust the caregivers and the agency. You’ll have to determine for yourself what signs suggest someone will be a good fit for your loved one. It may take a bit of experience to find the formula that works for you. It will come.

Read your loved one’s demeanor, moods, and body language around each caregiver. It’s okay to be picky.
This will be reliant upon your loved one’s ability to communicate. Better to be safe than sorry. Better to err on the side of caution. Hopefully, you’re accustomed to your loved one’s emotional cues and can get a good feel for his or her sense of safety and security around the caregivers.

This is only a smattering of ideas and suggestions, warnings and lessons learned. It was such an interesting experience going through those days of dad living in his home with 24-hour care. There are many more items that I’m sure I’ll cover over time, as I recall situations and people. Go with your gut. And, in the meantime, please check my Links page for information on questions to ask home health agencies. Just be prepared, do your research, and listen to what other families have to say. It may save you a lot of time and energy.