Tag Archives: Health

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.

Aside

I have to admit, every time I look at the header of My Father Doesn’t Know Me Anymore, I get a little sad. The series of pictures reflects more than just JHP,JR’s life. When I look at it, I see the potential, … Continue reading

Swim To The Ladder, Friend


                  
                        “I feel like I’m drowning.”

Those are the words spoken by a sweet friend of mine who was struggling with managing the increasing intensity of her role as a caregiver.  It’s such a hard place to be, but why would she be anywhere else? How could she be anywhere else? It’s a noble mindset that can leave a caregiver feeling overwhelmed and alone. But what else do you do?

After chatting with her, I went through some unpublished posts from last year, and lookie what I found. I wrote this in the spring of 2012 when I was going through managing a few realizations about people while continuing to make runs back and forth to dad’s place. I think it speaks to the drowning feeling.

“As you may have noticed, I took a few days off from My Father Doesn’t Know Me Anymore. I needed a break from thinking about this all the time, something that I believe most family caregivers need. Our loved ones seem to be constantly on our minds, even when we think they aren’t.
 
“I’ve been trying compose a wonderfully positive to piece – something any caregiver could relate to. Well, guess what? I got nothin’ right now. I don’t have any sweet little anecdotes to share about JHP, JR, his interactions with my daughters, or any clever little realizations that can help others. I just don’t have anything right now.
 
“I am exhausted and feeling very much alone.  I feel unduly judged for my concerns about the goings-on in dad’s world by people who aren’t supposed to judge me.
 
“I’m not sure how much longer I can keep this up.”
 

Reading this brought it all back to me. I felt it in my being, in my stomach, in my head – drowning while treading water in a dark lake all by myself. It was that feeling of no matter what I did it wasn’t enough for anyone, and I was tired of being seen at the over-protective, overly concerned, nit-picky B of a daughter. I needed clarity.

Like my friend and me, other family members on the front line feel the need to be with their loved ones. It’s a strong pull based on a variety of emotions – love, guilt, fear, concern, distrust, holding on, devotion, retribution, need for control, and maybe all of them combined.  These are the people who are in the thick of it emotionally, physically and mentally. It’s often hard to understand why others aren’t in it with them, why people don’t get upset about the way hired caregivers are behaving, or  why their “support” network doesn’t understand the need to talk about what seems like nothing more than trivial issues. Family and friends who aren’t on the front lines may not understand, and the front-liners feel the burden of the responsibility weighing them down more heavily when they feel alone.

It can be a lonely, scary, frustrating, exhausting place to be. It becomes even lonelier, scarier, more frustrating and more exhausting when your sounding boards, those “support” people, don’t contribute physically or emotionally. It’s not easy for anyone, but I have to say I’m biased. I lean towards being supportive of the one doing all the “grunt” work, so to speak. Getting yelled at, being bedside, lying to save the pain of realizing the people they are asking for have been dead for decades, working your life around your loved ones’ needs, leaving work to run to the hospital, doing all of the leg work creates a huge responsibility. And if that caregiver is a parent…..

So, the first thing I would say to someone feeling this heavy burden weighing them down, “Swim to the ladder.” The ladder needs to be made of rungs that represent healthy steps to build you up so you can keep going and pull yourself out of the water for a bit. If you choose activities that aren’t good for you – drink, rage, judgment, burying your head – then you won’t last much longer on this journey, and you won’t be any good to anyone.

One of the most important, yet challenging, rungs on the ladder for caregivers is to find someone, or a couple of someones, they can talk to openly and honestly. Caregivers need to be able to freely say what’s on their minds so they can  put it out of their heads and into the daylight to think it through. They need to feel heard, to feel supported. Caregivers last longer and are more effective when they are able to communicate what they want or need from those people who are their sounding boards. The last thing a caregiver needs when they’ve been giving their all is to hear someone minimize their concerns or treat them as a burden.

And, just a quick note on “giving their all.” Sometimes, the caregiver’s “all” seems to be less than someone else’s “all” because the caregiver is doing it ALL the time, because they are exhausted, because they are emotionally and physically drained from supporting the weight of another person’s physical and emotional being. After a while, an unsupported, overworked caregiver’s stamina wears out. It is like an athlete who just finished a marathon. There is a recovery period. There needs to be time between workouts for muscular, mental, emotional repairs. Caregivers can put on their blinders and focus all their energy on the tasks at hand day after day after day, but it will wear them down. It will drain them. It will leave them feeling uncertain, exhausted, in need of a friend or ten.

To the support network, I say  be straightforward with the caregiver. Let him/her know what your limits are. Don’t wait until you are at your wit’s end with your life and then blow up at them. Please try hard to keep your word, your commitment to them, and do what you said you would do. If you can’t, then be upfront. But please don’t leave the caregiver dangling. And certainly, if you can’t live up to your commitment, don’t get on the caregiver for feeling stressed out, run-down, or needy.

To the caregivers I say, take that time to find support. Set boundaries with your loved ones who aren’t on the front line with you, tell them what you need if they aren’t going to be there with you. But don’t put all your hope is one person. Find a support group. They can help you when you really are alone or when you just need a more understanding perspective. Consider journaling,  and try try try to take mental and emotional breaks to reenergize your heart, body, and mind. It’s a must. You’ve earned it!

And, finally, learn to dust drama of your shoulder and onto the floor. If you get through this journey without drama, write a book about it and share your techniques with the world. You will be a billionaire!

Keep up the good work!

Lucy
Jerome’s Daughter

Whiskey? Sure, Why Not?


Once we are out of our parents’ homes we can, for the most part, set aside our feelings about some of our parents’ personal issues. When the time comes for adult children to return to their parents’ sides in order to help them maneuver their way through dementia diagnoses,  they often find themselves facing more than just health care concerns. Many adult children have to face, head on, their judgments about their parents’ lifestyles. Childhood issues can come full force into adult children’s faces. And deal with them we must.

The following post may be a bit controversial. I know my stomach churns a little at the thought of being judged for what I’m about to write, but a friend said something to me that made me realize the point is not how people feel about my family’s choice. The point is to share my story and hopefully help others realize they are not alone. So, here I go.

JHP, JR and me, circa 1979(ish)

For as long as I can remember, my father has been an alcoholic. It’s colored my entire family’s life. It’s stained our childhood memories and caused a great deal of pain. So, in the beginning of all this JHP, JR dementia fun, I had to stare down the fact that I had (and probably still have) serious issues surrounding my father’s alcoholism. I probably  would have benefited from hiring a personal valet for all my baggage I carried about this one issue. And, oh, I would have done anything to have a sober father. Maybe I could have forced him to become one, against his will. My sister and I thought long and hard about making him sober. In the end, we chose to let him have his booze.

This wasn’t an easy decision.

See, after watching dad go through DT’s the last time he was in the hospital, then dealing with his withdrawal-driven tirades about wanting whiskey, we gave up on the idea of ever having a recovering alcoholic for a father, because even in his weakened state Dad could intimidate the hell out of just about anybody. I went through the usual frustrations, blame, resentment and sheer hatred. I even utilized avoidance tactics to put off enabling his drinking. Most often, they helped in the moment, but not for much longer than a moment.

I could have stopped buying his whiskey for him. I could have said, “No Dad! I won’t support your continued abuse of alcohol.” And maybe I did a couple of times. I could have poured out every bottle in his house. Did I consider it? Oh hell yes! Did I resent being in that position? Double hell yes. I think I can speak for my sister when I say she was as frustrated by it all as I was.  Did I follow through and stop buying, providing, crying? No. I kept buying his booze for him and I even taught caregivers how to make his drinks. Does that make me an enabler? Maybe. Does that make him any more of an alcoholic than he was before? Not likely. Does allowing an 89-year-old alcoholic to drink make me a bad person, or a bad daughter? No. I don’t think it does. And it’s taken me a couple of years to finally allow myself to be okay with his continued drinking.

Mind you, his drinking is monitored now. And sometimes he even forgets about booze, but it’s never permanent. In fact, I very well may be a trigger for his desire to drink. I don’t know. There’s a very good chance he associates me with liquor.

Now, coming to this decision has taken a great deal of time, effort, tears, conversations and a few visits with Al Anon. And, maybe, if JHP, JR. hadn’t lost everything else I would feel differently.

Let’s review:

  • The man who did the NY Times crossword puzzle in pen every morning, can no longer think of simple synonyms for everyday words.
  • The man who used to read a couple of books each week can no longer read because he can’t see well enough, and even if he could see he can’t comprehend the words he’s reading.
  • The man who used to play golf at least 5 days a week, can no longer remember how to play golf or walk well enough to do so.
  • The man who once argued and won in front of the Texas Supreme Court more than any attorney in the state can’t come up with words to make an argument.

He has no real friends. He has paid staff at the facility. He has his dog. He can’t drive. He can barely see. He doesn’t remember his own life. People tell him when to get up, when to eat, when to bathe. He can’t focus on a storyline, so he can’t even watch TV. He doesn’t even know how to work a TV any more. He has to rely on others to get him where he needs to go, even if it’s just down the hallway to the dining room. He can barely get himself to the bathroom without falling, and that’s when he’s stone cold sober.

If he wants whiskey or chocolate, I’ll give it to him. Hell, I’ll soak the candy bar in whiskey if that’s what he wants.

Lucy
Jerome’s Daughter/Bartender

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

How To Handle Significant Dates, Significant People: I Have No Idea


One of the challenges we face as caregivers is how to handle conversations about significant names and dates that are painful for our loved ones. Outsiders and well-meaning friends might say, “Just never bring it up,” but it’s not always that easy. It’s inevitable that we’ll have difficult conversations about family members who have gone before us. And it’s inevitable that a loved one will realize, time and time again, for the first time, that significant people in his/her life are gone.

Shortly after my father’s May 2008 stroke, he often asked where his parents were. Each time he asked, I’d respond by telling him they’d passed away. This would send him into a crying jag where he’d  hold his head and go on about what a horrible son he must have been if he couldn’t remember his parents were dead. It was painful to experience, painful to watch and painful to realize how much it was hurting him to find out that his loved ones were dead. The fact that each time I told him he was, in his own mind, hearing the news for the first time made me realize I had to rethink how to handle these situations.

These conversations are inevitable though. Experts suggest having visual reminders of your loved one’s life available for them to see every day. Unless we withhold pictures of dead loved ones, there’s no way around it. Unless your loved one has absolutely no memory of significant people in his/her life, there’s no way around it. So how do you deal with it?

I haven’t figured it out yet.

This topic is especially meaningful for me because today would be my mother’s 84th  birthday. Mom died in 1974 after a rough battle with colon cancer. Dad was understandably devastated by mom’s early death. For as long as I can remember he said, “I married my sweetheart. I’ll never marry again.” He dated, but he kept his word and never remarried.

What often happens on days like this is that, even though my father’s vision has declined so much he’s nearly blind, he senses things about me.  He also seems to have body memory around significant dates. Add to this the fact that I named my oldest daughter after my mother and I named my youngest daughter after my sister Shirley, who died at the ripe old age of 27, it’s really hard to avoid these conversations.

For some time, whenever I referred to either of my daughters by name, my father’s eyes would widen and he’d look around. “Where is mommy? Why won’t she visit me? Is she mad?” That was heartbreaking. I had to tell him she was dead because if he thought she was alive and not visiting, wouldn’t that have hurt him more? So now, whenever I refer to my children I call them my daughters, the girls, or “my little ones, Joy and Shirlee,” in the hopes of avoiding reminding him that his wife is dead.

Some days I wonder if my father remembers any of his family because he asked about anybody for some time. I also try to limit my references to them and, frankly, that’s become easier since we spend more time sitting together in silence than we do talking. However, I wouldn’t be the least bit surprised if today was the day he asked questions. I wouldn’t be surprised if he reacted to hearing me saying something as simple as, “Joy, will you hand me a napkin, please?”

So, there’s a very good chance that if I visit him today he will be in a bad mood or he will sense that something is bothering me, or that hearing my daughter’s name will fire something in his old memory banks and he’ll think of his wife. I just never know what the trigger will be for him. But you can bet, if we do go visit dad, I will probably work hard not to use the word joy in any context just out of sheer avoidance. I guess we’ll just muddle through as we always do.

I obviously don’t have the perfect answer for how to handle these conversations, but I do have something to say. Be compassionate, understanding, and emotionally honest. There’s no way of controlling your loved one’s recall or reactions. They change from day to day. Do your best to avoid showing judgment. Try not to let it get to you and, please, never lead your loved one to feeling guilty for lack of memory or reactions to memories. Because, the truth of the matter is, dementia will eventually beat out the remaining memories of significant people and dates.

And I’m still not sure which is worse: remembering, over and over again for the first time, that they’ve lost people they loved or not remembering their loved ones at all.

Lucy

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.