Caring for an Elder with Dementia: Top 3 Negatives Made Positive

Guest blogger, Derek Hobson, shares how the difficulties that caregivers encounter can help us grow.  Welcome Derek.

Caring for an Elder with Dementia: Top 3 Negatives Made Positive
By: Derek Hobson

Becoming a family caregiver wasn’t easy and there were times where I downright loathed all the responsibilities. But when my grandmother passed away and my duties were lifted, there was this… elation that occurred. I don’t want it to sound like I was thankful that she passed, because certainly the first few weeks were dreadful, but I didn’t want to feel guilty for feeling relieved that she had found peace. Part of what made me feel less guilty was the fact that I had contributed in such a big way, but more than that, I felt less guilt because caring for my grandmother made me capable of handling so much more.
At the time, of course, many of the tasks were unbearable (which I’ll get to in the list), but once they were completed for the final time, I saw how my grandmother had helped me grow. Things that I hated doing, made me more prepared for future situations. It’s almost like – no, it absolutely is like yin and yang. Two supposedly opposite sensations, turned out to be complementary. By struggling to take care of my grandmother, I found the positives in every negative task. Admittedly, that not make a ton of sense without context, so here are my top 3 negatives made positive.
1. Sleeping in Front of the Door
My grandmother had dementia and even though we wheeled her around the house, she was not confined to the wheelchair. While it wasn’t often, a few times she would sometimes stumble out of bed and walk around the house in the night. It could’ve been much worse, I mean, I’ve heard of stories of seniors leaving the house at night and wandering around the neighborhood. While this never happened to my family, my grandfather would not hear of it; his precaution was to rotate who would sleep in front of the door to make sure she didn’t wander off.
This wasn’t simply uncomfortable, it was unnecessary! I made multiple suggestions for how we could seal the door, set up a blockade, or rig a bell, but my mother reminded me it wasn’t simply making my grandmother comfortable, but my grandfather as well. So, I begrudgingly slept in front of her door on more than a few occasions.
At the time, I never would’ve thought this would evolve into a positive thing, but it has. I don’t know how many people have researched power-napping. The idea being that if you nap for 15 minutes, you’ll feel as refreshed as if you slept for two hours (or 8 hours in some cases). Well, I could NEVER power-nap. I never knew how long to set my alarm for because I needed some time to fall asleep, but then, if I set my alarm for 20 minutes, I would be thinking of how limited my time is, I’d be counting it down rather than focusing on getting to sleep; it was dreadful!
Now though? After sleeping in front of my grandmother’s door, I can sleep practically anywhere. It may sound silly, but it’s a great thing. If I had a long night and have a big presentation in the morning, I nap for 15 minutes in my car, get up and do it. If I’m exhausted after the gym, but it’s still early in the evening, then I’ll nap for 15 minutes, and head out. I can sleep in my car, on a plane, the stairs – I haven’t tried it, but I’m sure I could. I am definitely better for it.
2. Communication
Eventually, my grandmother’s dementia became so bad that she couldn’t form sentences anymore. However, when it hadn’t progressed that far, she would talk to me, tell me stories, and ask me questions… and then repeat those questions and those stories. The repetitiveness made me so frustrated – especially when I thought about what I’d rather be doing.
Now, this negative didn’t happen overnight, but after several months, I realized what a unique blessing this could be. I’d often been told that I wasn’t a good listener… well, actually, if I’m being honest, I was told, “you don’t respect people when they talk to you,” which seemed harsh at the time. However, as time went on, I realized what that meant; the very thing, I said above, that I grew frustrated when I thought about what I’d rather be doing.
When I stopped thinking of where I’d rather be or who I’d rather be with, I started listening and was given the gift of communication. When my grandmother repeated questions to me, I didn’t always answer with clarity or with specifics. I would answer robotically or with generic answers. Later though, I started actively listening and really empathized with my grandmother. There was a stark difference between when I would just answer monotonously and when I actually started responding.
Since then, I’ve noticed in my personal life that I butt heads with people less often and when I do it’s resolved with concise communication.
3. The Stuff You Don’t Want To Do
I never used to talk about this stuff openly, but it’s something I’m sure many family caregivers experience. The stuff you don’t want to do… specifically dressing, bathing and any sort of clean-up that needs to happen.
My grandfather was a saint and tried to take all this on by himself, but even he needed a break and of course, that meant I was runner-up.
I’m not going to lie to you and say that I enjoyed any of this stuff… looking back, I’m actually surprised I managed at all. But without going into the details, I have since learned that I can handle just about anything. If it’s gross, sticky, smelly – doesn’t matter!
I’m still a young guy (relatively), but when my friends asked me to look after their kid for a day, I changed diapers with the best of them. I’m sure there are people who are pretty squeamish, but with no previous experience with babies, I could change diapers and clean spills without any uneasiness. Pretty much anything others don’t want to do, I do without a second thought.
Again, these aren’t things I relished at the time, but they’ve had a positive impact on my everyday life. Being a caregiver is not easy by any stretch of the imagination and it’s why I’m thankful that today I can work with a handful of people who actively lessen the load of family caregivers, but the rewards are manifold and actionable.

Derek Hobson, BA, is the editor for ConciergeCareAdvisors.com, a senior care referral agency. He developed a passion for elder care when he became the primary caregiver for his grandmother. Since then, he has sought to inspire fellow caregivers as “there is no success without hardship.”

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Hearing Voices

Many Hear Voices When No One is There

“Many people hear voices when no-one is there. Some of them are called mad and are shut up in rooms where they stare at the walls all day. Others are called writers and they do pretty much the same thing.” ~ Margaret Chittenden

Little did I know when I first read that quote how true it is or how the voices of mental illness and creativity would come together in my life.

Rodger heard the voices of mental illness. Diagnosed with paranoid schizophrenia as a young man they often spoke to him. I hear the voices of my characters. As I write our story I rely on his voices and mine to bring it to life.

I knew he was a bit odd long before he came to live with us. His life centered on meals and his three daily walks. His social life was almost nonexistent. He would attend weddings and funerals if pressed to do so by his wife and he barely tolerated visits from family. Other than that, he spent his days in front of the television watching news programs or reruns of old westerns. I liked him but I didn’t know him very well. Even years after becoming his daughter-in-law we never had anything more than a very superficial conversation before he turned inward again.

“Hi. How’s everything. How are the kids? How is work? That’s good.”

He was the same with everyone no matter how closely related or long it had been seen he’d seen them.

Married for over forty years, my in-laws had a contentious relationship, yet it worked for them. I believed that once the worst of his grief over losing her eased, he would like living with us. Mike and I would provide a loving and safe home where he would finally be able to relax in peace and quiet. I didn’t know the voices were already working against me.

I was putting the last touches on dinner and called his name to let him know it was almost time to eat when he ran out of the house and down the street in a panic.

“She’s trying to kill me! I can’t trust her!” he told the sheriff’s deputy who happened to live nearby. Seconds later I arrived beside them; out of breath from running after him while praying I’d be able to catch him before he had a heart attack.That was the beginning of years of cat and mouse games as I tried to everything I could to save him from himself and he did everything he could to resist my efforts. I tried to understand what was happening.

“What do the voices say?” I asked.

“They say what they say.”

“How do you feel when they speak to you?”

“Nervous and suspicious.”

“Suspicious of what?”

“Suspicious. That’s it.” He refused to say more. Eventually I could tell when the voices returned.

“The others are active today,” I would say to myself. Although he got his daily medication on time, crushed and mixed into applesauce, more and more often it wasn’t enough to keep them quiet.

“Is this food any good?” he asked one day before lowering his head to sniff his plate. I thought he was concerned that something had spoiled after the power was knocked out by a severe storm. I assured him it was fine.

“She’s poisoning me slowly,” he told the nurse on his next visit to the hospital. “It’s not her fault. She has to do what the boss says.”

“Who is the boss?” I asked.

“The boss is the boss. He controls everything. Don’t let her kill me.”  After taking antipsychotics for over 60 years, the medication was losing the ability to work.

There may come a time when it doesn’t work at all,” his doctor warned. As much I did not want to lose him, I prayed God would take him before that happened. He often said that when the time came he wanted to die at home. If there was a way to make that possible we would.

“Did he ever tell you what they say to him?”

“He won’t talk about that.”

“Based on his behavior when off his medication, in his case they are not saying anything good. Often they are screaming at him when you are talking to him. If he doesn’t respond to you, or refuses to believe what you tell him, it could be because he’s been warned not to. It could also be that he doesn’t understand what you are saying because he’s hearing several voices at the same time,” the doctor said. I can relate to that last part. I tune everything out when a new character starts clamoring to have his or her story told. It’s never frightening but it can be very confusing when a multitude of ideas start coming more rapidly than I can sort them out. It may take my husband several tries to get my attention when this happens.

“Earth to Bobbi.”

“Hmmm? Did you say something?”

“Okay I get it. The others are here again.”

Mike copied me about ‘the others’ but it’s true. The voices of my characters are often as real to me as Rodger’s voices were to him. And now Rodger’s voice is one I hear as I write our story. Sometimes what he says is not very nice, reminding me of the difficult days we shared, and sometimes his message is a touching reminder of why our time together was such a gift.

“Welcome back,” I whisper.

When Rodger was hearing voices I was careful not to confront him. As long as he didn’t act out in way that could be dangerous to him or others I didn’t interfere. If he became restless or combative I followed doctor’s orders and gave him a prescribed sedative.

When I hear the voices in my head I sit at my desk and let the story flow, just as I’m doing now. I hope you find it helpful.Does your loved one suffer from mental illness or any form of dementia that causes them to be delusional, have hallucinations or hear voices? How do you handle it?

For more information on this subject click on the links below.

http://www.hearing-voices.org/voices-visions/

http://www.intervoiceonline.org/support-recovery/a-practical-guide

http://www.psychologytoday.com/articles/200701/in-your-head-hearing-voices

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Good Morning Caregivers – A Fearsome Intimacy

Caregiving Fearsome Intimacy

When we hold our infants in our arms we are filled with awe and hope for the future. We envision a life of promises fulfilled. We never picture them feeding us, holding our hand to keep us from falling, or changing our underthings.  I couldn’t type the word diapers. The thought of losing my dignity to such a degree is truly fearsome.  In my mind I hear the words, “It’s enough to scare the pants off me.”  The irony makes me shudder and chuckle at the same time.

The caregiver and the cared for locked in a fearsome intimacy.  I don’t know where the quote came from.  If I did I would give credit here. What I do know is those five simple words speak a devastating truth.

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Dealing with Caregiver Guilt

As usual, I was multi-tasking. I had one load of dirty clothes in the washing machine and one load of clean clothes running track in the dryer. The timer was set to notify me when the pot of potatoes I’d set to boil were be done enough to mash for Rodger’s lunch. I was trying to remember where I put the cordless phone. I didn’t want to scurry around looking for it when the nurse called to discuss the continuing fluctuations in his blood pressure.

And I was trying to figure out how to deal with the guilt.

I wanted be more like my friend, Dana. Dana does not multi-task, claiming that it takes less effort to do ten things consecutively than it does to try to do five things all at once and she insists that feeling guilty is a complete waste of her  time and energy.

“Get over it. Guilt is a useless emotion.” She is probably right. I just don’t know how she does it.

I tried doing fewer tasks at once but I never got down to doing only one thing at a time. No matter where I was or what I was doing part of my mind and most of my heart was with him. I went to sleep puzzling over how to add flavor to his diet of pureed food and thickened liquids.  I woke up wondering what his blood pressure reading would be.  I often stopped in mid step, listening to the too still air, hoping for a small cough or sneeze to signal he was still breathing.

Caring for him reminded me of caring for my babies the first days of their lives when they seemed too fragile to be of this world and I feared that any misstep on my part would bring disaster.

He had a heart attack. He almost died. Again. And I felt so guilty about that. Shouldn’t I have seen the signs before it got that far? Looking back, he did seem more tired than usual and his heart rate was slow enough for an alarm to be sent to his doctor through the tele-health monitor in our home.  Still, everyone agreed he seemed to be doing okay and the readings weren’t dangerously low.

“We know you’re taking good care of him,” his care coordinator said. “We’ll keep an on this for a day or two and see what happens.”

Now we know. A heart attack happened. I realize that his EKGs had been fine up to that day. I know he never complained of chest pain or shortness of breath until the moment the blood clot hit him. I know that I did the right thing when I called 911 right away.

“Time is critical in a situation like this, the paramedic explained. And you got us here fast. You did good.”I didn’t feel good. I felt guilty. I wanted to know how to deal with that.

And I wasn’t the only one to feel it.  Not by a long shot.My husband felt guilty because I spent most of my time caring for his father. On an especially hard day he apologized many times. ”My poor honey. I feel so guilty.”

kept telling him there was no reason for him to feel any guilt. He went s to work every day to earn the money that supported us. We planned for this long before it became necessary. We agreed on the division of labor. But still he felt it and it showed in his face even when he didn’t say it.

I understood.  My own father, older than Mike’s Dad, was also quite ill. He was being taken care of by his stepson in Florida while I cared for someone not of my blood.  I longed to go to him but I couldn’t and he didn’t to want to leave Florida. I cringed every time I heard him say, “I don’t know what I’d do without Brian.”

A cousin of mine, so close we are more like sisters than cousins, was filled with guilt because her mother was being cared for by her daughter. Grandmother and Granddaughter lived in the same town and shared a special bond.  My cousin lived across the country, visited often and called almost daily.

“She’s doing what I should be doing. I feel such guilt,” my cousin said.

“There is nothing wrong with your daughter being there for your mother. It’s what they both want, and she is on good hands. It’s okay,” I insisted. But in my heart I felt guilty for not having a better answer for her.

Rodger, my father, and my Aunt were all getting good care. The problem was not with them, it was with us. The caregivers. The ones who try to do it all and can’t.

The timer on the stove went off almost simultaneously with the buzzer on the dryer. The phone was ringing and Rodger was making his way down the stairs. I could deal with all that. That part was easy. But I needed to know how to deal with the guilt. How could I get over that?

When things finally settled down I picked up the phone and called Dana.

Is there someone you can call when the guilt starts getting to you? Everyone needs someone with whom to vent. If you don’t know where to turn, get in touch with me. I’m a great listener.

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Good Morning Caregivers – A Few Days Away

Today I am headed to Pittsburgh for the annual Pennwriters Conference where I am  attending  several writing workshops to help me improve my work as well as doing some teaching myself. Every year I look forward to spending time with this wonderful group of writers, from beginners to  best-selling authors, who have become my friends and who inspire me every day.

I have chosen some of my past blogs to run during my absence. I’ll be back here and writing on Wednesday, May 20th.  Please don’t hesitate to comment as you see fit. I look forward to sharing more with you on my return.

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Good Morning Caregivers – For Your Inner Peace

 

inner peace

But if it does, if someone is driving you crazy with advice on how to do this and telling you things you already know and have heard so often you want to scream. If a family member is more concerned about where the money for care is going than how much you are giving up to be there for the one who needs you. If your loved one is failing fast and your heart is broken, know that I understand and I am here for you.

Sometimes there is no peace for us. Only the next moment and worry about what it will bring. For those minutes, hours, days, years, I send you my prayers every night.

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Good Morning Caregivers – Just for Today

Maxine - Throw in the towel

Caregivers, just for today leave the towel where it landed. I know you are doing everything you can to maintain your home, your family, the person in your care. You do much more for others than you do for yourself. Just for today let go of every little thing that doesn’t have to be done right now.

Maybe you were taught to make your bed every day. Just for today leave it unmade. 
Instead of cooking dinner order a pizza.

Let the dust settle on the coffee table. It will be there tomorrow.
Stay in your pajamas.
Let someone else take out the trash.

Consider the things you do automatically because you have always done them … pick at least one … and just for today let it go. Use those few moments to have a cup of coffee with Maxine and absorb a bit of her attitude. Do it just for today. Do it for you.

 

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Good Morning Caregivers

superpower

When I was a young mother I often wished I knew what my babies were thinking. I wanted to know what the world looked to them, how it felt to be so dependent. Were there moments when they felt alone and wondered how they had landed in this place so different from what they had come to know? When did they recognize me as someone who loved them and would protect them always?

Caring for Rodger I wished again for that same super power. I never received the ability to read minds but I never stopped trying to figure out how to keep him warm, comfortable, and safe. Some days the things I tried worked, some days they didn’t. There were days many days when my actions confused and frustrated him. But there were also many when he recognized me as someone who loved him and would protect him always. Love and care are the super powers we have and that dear caregiver is everything to them regardless of their age or needs.  Be proud of who you are and what you do.

If you have a super power, or wish you did, tell us about it here.

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Confessions of an Imperfect Caregiver Juniper Grove Book Tour

Confessions of an Imperfect Caregiver Juniper Grove Book Tour.

Good Morning Caregivers – If I Tell You I Need You

If I tell you I need you

Somewhere a caregiver needs you. They may not say it out loud but they are communicating their need. It could be in their absence from all the activities they used to be involved with or by the phone calls, text messages or tweets that no longer arrive in your inbox.  Perhaps the last time you saw her or him in the grocery store there was a brief moment when he or she appeared about to cry.

Maybe you asked what you could do to help and were told everything is okay but, somewhere inside, you knew something was not as it should be.

It’s not that caregivers don’t or want your help, it’s that they don’t know what to ask for.

How do you request a good night’s sleep or a few moments to collect your thoughts? How do you tell friends who are so busy with their own families that you are lonely and wish they would stop by for a visit now and then?

How do ask someone to keep you from falling when every moment of your time is spent holding on for dear life to another?

Somewhere a caregiver is trying hard never having to depend on anyone, to never show any weakness.

If you know a caregiver, please don’t ask if he needs help. Know that he does and do whatever you can to let him know he is not alone.

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