Show Don’t Tell – A Writer’s Advice For Caregivers

For writers, show don’t tell is the difference between: “John was being aggressive. Jane was frightened.”

And: “Stop! It’s me, Jane. I’m your daughter.” Jane ducked as the antique lamp whizzed through the air, missing her head by less than inch.

In the first example family members are left to fill in the details of what is going on. In the second one we see that John is out of control and Jane is in real danger. We feel for her and we want to help her in some way.

Showing your distant family members what you are dealing with on a daily basis may elicit a very different response than your telling them about the vile language your mother spews at you when you try to get her to eat. Or how she refuses to bathe or change clothes and hits when you try to calm her. They insist that the sweet woman they know would never act like that. You must be making it up.

You could provide example after example of the chaos dementia causes. How exhausting it is to be sleep deprived for months. How mean someone who raised you can be. How desperate you  are for a bit of understanding, a moment of peace and still they don’t get it.

So often I hear caregivers say, “Only someone who has done this can really understand what it is like.”

It’s true. What dementia does to a person cannot be expressed in mere words. So what can you do?

Show them.

Use the video camera on your cell phone as a way to communicate with your family. Brief clips of every day behavior can be emailed in moments. Show the anger and aggression, the refusal to eat and bathe. Let your family see what happens when their loved one is hallucinating and how dangerous things can get. Show your family how hopeless you become. How much you need help and understanding.

Nothing I suggest works for everyone  but at least your family will have seen for themselves what it’s really like to be a caregiver. It can’t hurt. Might help.

 

 

 

4 Reasons People with Dementia Hate to Shower & How to Fix It

shower-head

1. You asked: When asked a yes or no question a person with dementia may not understand the question and automatically answer with a resounding NO to avoid agreeing to anything they may not want.

Why? Because it’s one of the first words we learn when beginning to speak. It’s short and powerful and it works if we repeat it often enough. Instead of asking, get everything ready and then gently say, “Your shower is ready,” and lead him or her into the room.

2. Room Temperature: When preparing the room make sure it is very warm. It may feel like a sauna to you but to someone who is frail it could still feel chilly. Make sure the water is warm also but make sure it isn’t hot. Test it as you would before bathing an infant. Have plenty of soft, warm towels at hand. Warming them in the dryer just before shower time is a good idea.

3. Modesty: Most of us have some body issues and are reluctant to have others see us naked and this could be especially true of an elderly parent being bathed by one of their children.  It’s perfectly okay to wrap a towel around their chest and one over their lap and bathe them through the towel. They maintain their dignity, stay warm, and get clean all at the same time.

4. It’s Scary: Imagine sitting naked on an uncomfortable seat in a little room with sounds echoing around you. You’re not sure why you are, how you got there, or what’s going to happen. Then all of a sudden something starts falling out of the sky and hitting you on your head, chest or back.

Dementia affects vision as well as memory and other functions. The person in your care cannot see the water falling from the shower head. It’s confusing and frightening and they want nothing to do with it. (Note:  The next time you shower pay attention to the water flowing from the shower head. How well can you see it?)

To help alleviate the fear and confusion use a hand- held shower head and start at their feet, moving very slowly up the legs, talking softly as you go along, have their favorite music playing if you can. Let them wash themselves as much as possible.

When bathing is complete wrap them in warm towels even before leaving the shower and remain in the warm room until they are complete dry and clothed.

Will this work all the time for everyone? Probably not. There will come a time when showers and baths are no longer possible and bed baths are the best you can do. Until then,  try some of these suggestions they may make things just a little bit easier for both of you.

Five Practical Ways to Help Family With Mesothelioma

A Guest Post by Dani Alexis www.mesotheliomahelp.org

Mesothelioma is a type of cancer that affects the “mesothelium,” a layer of tissue found inside the lungs and lining other organs and areas of the body. Unlike some types of cancer, mesothelioma nearly always has a definable cause, like exposure to asbestos, silica dust, or similar substances.

Although the cause can often be pinpointed, that doesn’t change the reality of the disease or the fact that diagnosis often creates more questions than it answers.  Mesothelioma can leave a person who has it feeling helpless, angry, or afraid – and it can leave caregivers wondering what they can do to help.  Here are five concrete, practical ways you can make a difference.

  • Keep a health log. Mesothelioma is a progressive disease, and every person who has it responds to treatment a little differently. By taking on the task of tracking medications and making brief daily notes about your loved one’s health, you can help your loved one and their doctor spot patterns that will help to determine whether or not a particular treatment is working.
  • Become a good administrator. From keeping track of doctor’s appointments to making sure your loved one’s end-of-life plans are committed to writing, an illness like mesothelioma comes with a lot of paperwork. Spend a little time every day getting acquainted with your loved one’s current treatment plan, their insurance policies, and their estate plans.  Work with them to have yourself added to the list of people with whom their doctor may discuss their care.  Take these steps before you need to, so you’re ready if a crisis occurs.
  • Know your own rights. Millions of U.S. workers are covered by the federal Family and Medical Leave Act (FMLA), which allows them to take up to 12 weeks off work, unpaid, to care for a family member. Many workers also have compensation packages that allow them to take paid or unpaid time to care for a sick family member.  Check to see whether your workplace is covered by FMLA and what your compensation package offers, so you know how much time you have and what you need to do to protect your job and take care of your loved one.
  • Listen. Mesothelioma can be devastating news. The diagnosis often seems to come out of nowhere, and the fact that it can often be traced to a specific event, job, or time period can make the diagnosis seem even more unfair.  The best thing you can do for your loved one is to listen and encourage them to express their feelings. Your loved one may be feeling afraid, anxious, betrayed, angry, or hurt.  They may seem to have accepted the diagnosis one day, only to rage against the unfairness of it the next.  Remind them that their feelings are valid and that it’s okay to talk, cry, or process them in healthy ways, such as through journaling or exercise.
  1. Support yourself as well. It’s tough to be the “on call” person for your loved one all day, every day. Finding time for yourself can seem impossible.  That’s where a support group can help.  By connecting with other caregivers, you gain a place to safely process your feelings, as well as advice and guidance from others who are facing the same challenges you are.  Can’t find a support group for mesothelioma caregivers near you?  Try looking for support groups online or talking to those who provide care for family members with other chronic or serious conditions, such as cerebral palsy.  Even when the conditions are different, many of the tasks of caregiving – and the tips for making that caregiving easier – are the same.

www.mesotheliomahelp.org

If you are a caregiver for someone with mesothelioma, or know someone who is, and you would like a free Caregivers Are Heroes wrist band – send your request along with the complete mailing address including the street name and number, city, state, and zip code to me at bcarducci@comcast.net  (Continental U.S. address only).

National Family Caregivers Month – Tell Them You Need Help

Spread the word. Let everyone you know how many of us there are and how much we need their help. Don’t be shy. When someone says, “Let me know if you need anything.” Give them something to do.

Here are some suggestions:

Visit once or twice a month for thirty minutes so I can shower and rest for a few minutes.

Call when you are going to the grocery store and ask if we need anything.

Cut the grass or rake the leaves in my yard.

Once a month provide a meal so I don’t nave to cook.

Take my car to be inspected or pick up prescriptions at the pharmacy.

Be my friend when I need to vent and please don’t judge me when I am at my most vulnerable. This is harder than I ever imagined and I am doing the best I can.

What would you add  to the list above? What will you say when well meaning people say, “Let me know if you need anything?”

DROWNING

drowning

The Imperfect Caregiver is here to be a lifeline for you. I know how hard it is every day, how alone you feel, and how you wish that someone would truly understand.

You are amazing even on the days you feel as if you failed. When things change moment by moment you can’t be expected to know all the answers or to get it right every time. Sometimes anger is the only way to get through to a muddled brain. Cry when you must, laugh when you can, and know you are not alone.

 

 

Four of the Saddest Words Ever Spoken

She doesn’t remember me.

I hope my children never have a reason to say them. But it could happen. If it does I hope they understand that even in my confused mind they are still a part of me.

By the time I reach that point I will have lost much already.

My short term memory.

My rich vocabulary.

My love of long, hot showers.

My ability to cook.

My driver’s license or even how to find my way home if I did still have that privilege.

 

I pray I’ll still have the ability to read and understand the words my favorite authors have so painstakingly crafted. A world without books would be barren indeed for someone who loves to read as much as I do.

Alzheimer’s or some other form of dementia will have taken me somewhere back in time.

Perhaps I am reliving my days as a busy young mother and you, my darling daughter or son, are still in elementary school. You have not yet grown into the wonderful adult you will become.  I see you pink cheeked and out of breath after running up the steps, opening the screen door, and calling out, “Mom, I’m home. Guess what I got on my spelling test today!”

It may not seem like it in the moment but the memory of you is deeply implanted in my heart. The heart that beat so close to yours during the time I carried you. The heart that cried with you when you were hurt and rejoiced with you when you achieved a goal.

If the day comes when I look at you and ask, “Who are you?” I hope you will smile, give me your name, and tell me about your mother.

I love you. I pray you never forget that.

Dr. Phil: Please help support caregivers via the Dr. Phil Foundation. Caregivers are in desperate need of respite and you can help make it happen.

Giveaway for Caregivers

Caregiver Bracelet

Free to Followers of The Imperfect Caregiver

(US Residents Only)

Caregivers need all the support they can get. One way to increase awareness is to show the world how many of us there are, including caregivers, those who have been caregivers, and those who may become caregivers.  Our numbers grow every day and will continue to increase until cures for Alzheimer’s, all the other forms of dementia, and traumatic brain disease are found.  One way to do that is to display our support for all to see.

To receive a free Caregivers Are Heroes bracelet: Follow The Imperfect Caregiver blog and send a request in the comment section below. Include your name and complete mailing address. Address will not be published on this site.   Requests may also be sent to me directly via email at bcarducci@comcast.net  No mailing costs or hidden fees apply. This is my gift to individual caregivers.  Current followers are eligible for this free gift.

Dr. Phil, we need your help! Please use your resources and that of the Dr. Phil Foundation to create a grant to help caregivers most in need receive the help and support they so desperately need.

To add your voice to mine contact Dr. Phil at www.DrPhil.com

 

 

 

NO!

No

NO! Two letters that exude tremendous power. It’s easy to say and has a huge impact. It soon becomes a favorite word for people in our care.

It’s time to eat. Are you hungry?

No.

It’s time for bed. You need to rest.

No.

Bath time.

No!

Food they loved yesterday they want no part of today. Bedtime becomes something to be avoided at all costs. Take a bath? At the very suggestion a temper tantrum is bound to ensue. This is how it often is for them and for us. And it’s so damn frustrating for everyone. Admit it, you get mad. You begin to think they are doing this on purpose to get back at you for some unknown reason. You want to cry and scream and throw a tantrum of your own. I did. I did all of that and it didn’t help one damn bit. And after my little tirade had ended the guilt set in. How could I behave like that? He was sick. He couldn’t help it. What was wrong with me?

The answer to that is, nothing. Nothing was wrong with me and nothing is wrong with you.

The fault can be found in this quote from the 1967 film Cool Hand Luke

“What we’ve got here is a failure to communicate.”

People with dementia often do not understand the question and don’t know what to say in response and as a result take the easy way, or in this case, the easy word, out. NO becomes automatic.

When they can’t tell us what they are thinking or feeling their behavior becomes their way of communicating. What would you do if you couldn’t tell someone you were hungry, afraid, cold, or too hot? What if they kept asking you questions in a language you could not understand?

I know I’d become angry and want nothing to do with them. I’d dig in my heels and refuse to cooperate. I’d also hope that someone somewhere would figure out what I needed or wanted.

Sitting here now, writing about it instead of living it every day, I hope to be able to help you.

Diffuse, diffuse, diffuse, is always the answer. Like everything else in dementia world it isn’t easy. It’s simply what is.

If they say no to food take it away and offer it again a half hour later. Don’t ask if they want it, put it in front of them and walk away. If they have to be fed, get them ready and start feeding them. If they refuse again walk away again. Go back a half hour later and say, “I prepared the food you asked for. Here it is.” This worked for us until it didn’t. There came a time when he stopped eating altogether. It broke my heart and it will yours too but it happens when they are preparing to go. It’s time for hospice.

The sleep problem is one of the hardest for us all. They need and want less sleep, we need more in order to care for them and ourselves. If you are alone in this you have to rest when you can. If that means the housework goes, so be it. I wish I had an answer for this. I don’t. If anyone does, please post it here.

Rodger would refuse to bathe and wear the same clothes for days at a time. He would begin to smell bad. He insisted that people in the Old Country (Italy) don’t wash as often as people in America. There was no convincing him otherwise so I stopped trying. He would take a shower and change his clothes before going to the doctor. I used that a lot. He never realized he had a lot of canceled appointments after bathing. Sneaky but effective.

When he could no longer shower by himself I would start the water running, put his shower seat in the tub, and warm some towels in the dryer and lead him into the bathroom. When he saw everything was ready he didn’t resist. This may not work for everyone but it may work for some.

I recently read that water is invisible to some people with dementia. They don’t want it on them and they don’t want to drink it. I don’t blame them. I wouldn’t want some invisible substance pelting me either. Nor would I want to put something I couldn’t see into my mouth. It’s up to us to figure out a way to help them understand what’s happening. Use a shower wand and let the warm water flow over their feet until it is okay to move up the body. Keep the spray away from their face. If modesty is a factor allow them to shower in their underwear. They will get clean, the underwear will get wet and they will take it off and put on a clean set.

When it comes to drinking, try adding a few drops of juice in the water to give it some color.

Even if you try these things and they work, the NO! won’t go away entirely and all of this may be a bust for some of you. I understand that your situation is as unique as the person in your care. If there were a magic answer we’d all use it and this blog would go away. I’d miss it but I would celebrate too.

If you have a tip, a hint, a suggestion that works for you I invite you to share it in the comment section. We need all the help we can get and we need each other. Blessed be.

Don’t let Dr. Phil say NO to the Dr. Phil Challenge. Join me in pinging on him to use his resources to establish grant funds to help caregivers who need it most. www.DrPhil.com

 

Winner, Winner

find some humor

Sometimes all you can do is laugh. The following is an excerpt from my book, Confessions of an Imperfect Caregiver.

When he first came to live with us, the only things he asked us to buy for him were Milk of Magnesia and prune juice. He had prescriptions for stool softeners and laxatives issued by his former doctors and continued by his new doctor. He constantly complained of constipation, greeting everyone he spoke to, including strangers, with “Hello. How’s everything? My bowels don’t move.” If he did happen to go, he made sure he told them about that as well, in great detail. It soon became clear he was taking far too much of the stuff. Every day, in the morning and at midday, he’d drink a large glass of prune juice, followed by Milk of Magnesia. Often he’d wait a few moments after taking it, look at his watch, and take some more. A few moments later he’d do it again. One day, after just telling me he’d had a bowel movement, I saw him drink another large glass of prune juice and reach for the Milk of Magnesia.

“Why are you taking that? “ I asked.

“For the constipation,” he said.

“But you just went.”

“That don’t count. It was all liquid.”

That’s when I knew I had to do something. No matter how we tried to explain it to him, he wouldn’t accept that it was the laxatives that were causing his problem. The more he took, the worse it got—and the more he worried—resulting in a vicious cycle that was interfering in his normal bodily functions. His psychiatrist said that it’s not unusual for a schizophrenic to keep track of what goes in and out of his body. In his mind, solid food was going in but nothing solid was coming out. That meant something was very wrong. Once I began to limit his access to prune juice and Milk of Magnesia, and started monitoring his use of laxatives, he started showing signs of stress. He paced and muttered to himself and began making frequent trips to the bathroom where he’d sit for hours, waiting for something to happen. I hated to see him like that, but I had to ease him off the stuff. His doctor tried to help by telling him that taking too many laxatives could interfere with his other medications and land him back in the hospital. He wasn’t buying it. When I wouldn’t give in, he complained to Mike, and when Mike backed me up, he called him one of the worst insults he could think of.

“You’re nothing but a dictator! You’re another Mussolini, that’s what you are!”

Later, after Rodger calmed down and we were getting ready for bed, Mike looked over at me and shook his head. “Mussolini? Now I’m Mussolini?”

I couldn’t hold it in any longer. The giggles I’d been trying hard to stifle came rolling out. “The Mussolini of laxatives!” I laughed harder. “You Fascist poop dictator!”

Mike looked at me in confusion for a moment, and then the hilarity of the situation hit him and he was laughing as hard as I was. I laughed so hard I got the hiccups, and that made us laugh even more. We ended up rolling on the bed, laughter feeding more laughter, until we were exhausted.

“Oh wow, I needed that,” I said when I was finally able to catch my breath.

“Me too,” Mike agreed. “I don’t know how you do it every day. He’s so damned stubborn. I’m glad I’m not like that.”

“Right.” I poked him the ribs. “Me either. I’m not stubborn. I’m determined.”

“Yes, dear,” Mike said with a grin. “Do you think you can determine to keep loving me through all this?”

“Sure, if you can determine to come over here and give me a kiss.”

“Sure thing, Babe.” He enveloped me in his arms and kissed me, both of still chuckling.

If you’ve have a winning moment that laugh you laughing, I invite you to share it here:

And if you want to vent – Please join me in pinging on Dr. Phil to use his resources to help caregivers via creating a grant for respite care and other kinds of help for caregivers who need it most.  Send him a message at www.drphil.com

Out of Order!

out of order sticker on my head

Wouldn’t it be nice to do just that? I know most of you can’t but it’s a wonderful thought, isn’t it?

When I saw this print I smiled. Not only at the sentiment but at the determined look on the duck’s face. And look at his stance. He means business.

“I’ve had it! I have been pushed to my limits and I’m done!” is what I see in this picture. There is no way to tell if he actually did what he felt like doing but I bet it felt good to announce his feelings to the world.

I had many days when I felt exactly like he does. I wanted to vent not only my feelings of anger and frustration but also my cry for help. In those moments I truly was “out of order.” My body was exhausted and my spirit broken.  I didn’t go back to bed and you won’t either. You can’t. There is too much to do. But, you can vent and you should.  If not here, then in private. Look in the mirror and stand like this little duck and let it out. Cry and scream if you have to. And, if you do, drop me a note in the comment section and let me know how it goes. It may just make your day.  I’m smiling just thinking about it and I hope you are too.

Dr. Phil, caregivers need your help. Please accept the Dr. Phil Challenge and use your resources and the Dr. Phil Foundation to help caregivers most in need. I’ll happily help in any way you see fit.  You may contact me directly at bcarducci@comcast.net

Caregivers, to contact Dr.Phil and add your voice to mine click on the links below.

http://drphilfoundation.org/

http://www.drphil.com/

@DrPhil

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