Fireworks and Sundowning – Not a Happy Fourth of July

fear of light

As if sundowning weren’t a challenge for those with dementia and their caregivers we add fireworks to the mix on July 4th each year. A person who once loved fireworks may respond differently now. For someone with dementia, the loud pops and explosions can trigger memories of wartime experiences causing a return or worsening of PTSD (Post Traumatic Stress Disorder). Even someone who never went to war can be deeply affected by these annual displays. The flashing lights and changing colors in the sky can trigger fear leading to aggressive behavior that can be dangerous for the caregiver and their family member. Between the community events and backyard enthusiasts, the noise and confusion can often go on for hours. While some are calling for the ban of fireworks all together others are reluctant to do away with the long held tradition that they grew up with. It’s not an issue that will likely be resolved soon. However there is some good news. Many communities are becoming more aware of the impact fireworks have on those with dementia and are taking steps to minimize the impact by using quiet fireworks that focus on colors and effects rather than sound. It may not be a complete fix but it’s a step in the right direction for many.

If that is not the case in your area, here are a few suggestions that may help make things less stressful for you and your family.

  1. Talk to the person in your care about the holiday and what it means to him or her. Listen to their stories of picnics past and how they showed their pride in their country.
  2. Encourage them to talk about fireworks. Were they exciting and fun or too loud and scary?
  3. If you live near a place where you see and hear fireworks from your home, you should prepare them for what will happen. They may not remember later but you never know what will help on day like this and it’s worth a try.
  4. Early in the day may be a good time to show them a video of fireworks. There are a number links of the displays available for viewing on social media. Turn the sound off before showing it to the person in your care. Explain that they may see these lights in the sky later that night and you will sit with them until it’s over.
  5. If even the silent display is upsetting, close the blinds and drapes in their room before sunset to block out the flashing lights. Play music he or she likes using earbuds or head phones if possible to mask the noise. If these devices are not available or practical in your situation, play the music anyway and sing or dance along with it to distract them, they may even join you.

Behavior is communication and their actions always include clues as to where they are and how they feel. It is when we enter their world rather than insisting they live in our reality that true understanding comes to us, the caregivers.

Bobbi Carducci was a caregiver for her father-in-law with dementia for seven years. She is a caregiver support group leader, blogger, author of the book, Confessions of an Imperfect Caregiver, and national speaker on caregiver issues. www.bobbicarducci.com www.theimperfectcaregiver.com Twitter:@BobbiCarducci2 Facebook: https://bit.ly/2FXw3JP

 

 

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Where Have My Friends Gone?

friend therapy

Being a caregiver for a loved one is lonely. From morning til night, and often well beyond, caregivers are on call even when our loved ones demand we leave them alone. We become the bad guys. The woman or man who insists they bathe when they don’t want to and serve them food when they have no wish to eat. Our parents or our spouses resent being treated like children. Their losses are devastating and they resent being reminded of them. Days go by when they don’t say a word. Some can’t. Others were told long ago not to speak to strangers and that is who we have become.

Knowing we are busy and often unable to leave the house our friends drift away. Not intentionally. It simply happens. They visit a few times only to find us distracted and harried, on constant alert for a call from our loved one or the sound of that horrible thump that signals another fall.  Sometimes we cry and then refuse to follow well intentioned advice to take time for ourselves and get enough rest. We aren’t as much fun as we used to be. I get it.  But still we need you. If only for a few minutes now and then we need you to come by and share a cup of coffee with us. We need a bit of adult conversation. Having a friend say, “Tell me about it,” and then sit back and listen as we speak is a moment of respite we cherish.

Please, even if you only have a few moments, be a friend to a caregiver today. Someone is waiting.


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NaBloPoMo November 2014

 

 

Moment of Respite – A Dog Comes to Visit

Dog give me strengthI didn’t know how he would react but I was ready to try anything to brighten his day and relieve some of the stress we were both feeling. His daily walks were a thing of the past. His diet was severely restricted and either he wasn’t sleeping well or he was sleeping all the time. Mike and I discussed it and decided to contact some people we knew who trained therapy dogs and request a home a visit. We had heard stories of how people in nursing homes and hospitals would smile and begin to share stories about pets they had when the friendly animals came to visit. Nurses and staff members reported that patients were happier and more alert for hours, and in some cases days, after they dogs left. We felt it was worth a try.

I wish I had a picture of that visit. I had let Rodger know he was going to have two visitors, one of them a dog. He was skeptical at first.

“What am I gonna do with a dog? I can’t walk no more. Who will clean up after it?”

“The dog isn’t going to live here. He’s coming for a short visit.”

“Why?”

“For something different. To help pass the time.”

“Do what you want. I hope it doesn’t pee on the floor.”

Rodger rarely smiled but when a beautiful golden retriever slowly entered the room and sat at his feet he couldn’t help himself.

After introducing herself and her dog, who was wearing a vest identifying him as a therapy dog, the volunteer sat quietly and allowed Rodger and Casey to get acquainted.

Shortly after the smile appeared Rodger slowly leaned over and tentatively began to pet Casey.

“Did you have a dog as a pet when you were a boy?” the volunteer asked.

“No. No pets. In the old country dogs are for working. Not like here where pets are spoiled.”

And then he began to talk. He spoke about life on the farm. For a while he went back to a time and place where he was able to walk outside in the sun and work up an appetite for homemade pasta and oven fresh bread. He sat up straighter and the light so rarely seen in his eyes made an appearance. I could feel my neck muscles relax as I watched the transformation. He may not have had a pet growing up, and to him dogs were meant to work, but what he didn’t seem to notice was that this one was working too. Casey was working a little bit of magic for both of us and for that I was grateful.

For more information on the positive impact dogs can have on loved ones with dementia go to:

http://www.alzheimersproject.org/About-Us/News-Photos-and-Calendar/Latest-News/Pets-and-Dementia

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NaBloPoMo November 2014

Good Morning Caregivers

It’s your turn again. Please tell me how you are doing. If you’d like to share a bot of your story, please do. It may help another caregiver.

how do you feel today

Sometimes Caregiving Looks Like This

Pull Up Big Girl Panties

There were days when I felt more like the mean girl than the patient saint some believe caregivers to be. I didn’t want to do it any more. I got mad. I hollered back when he shouted at me. I regretted it the moment it happened but let’s be honest, this is what caregiving is like some days.

I have to admit I never looked that good when going through it. I more closely resembled the image below, right down to the scraggly plumage. But, I couldn’t resist posting this image. I love her attitude.

Rough Week

 

It is critical that we address the realities of caregiving  and not sugar coat it.We have to do everything we can to support the over 65,000,000 caregivers in this country and the millions more who will become caregivers very soon.

 November is National Caregivers Month. The President has issued a proclamation in support of caregivers. Caregiver conferences are being held across the country. It’s time to talk less and provide more help. Our legislators would do well to read caregiver support sites and hear from the caregivers themselves. Feel free to start by sending them a link to my blog.

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NaBloPoMo November 2014

The Face of a Caregiver

The following is written by caregiver blogger, Barbara London

Hidden Face 3Walking along the street – do you see her? Can you tell who she is or what she may be hiding deep inside? Do her inner feelings show; her longings or desires? Do you know what she spends her time doing? She could be almost anyone you see in the park; at the mall; at the grocery store; walking beside you every day. She could be someone’s wife, mother, daughter, sister, maybe even grandmother. Actually, “she” could even be a “he”!

The face of a caregiver is that of any other person you may see. They have the same feelings and desires as you or anyone else. They spend their time caring for a loved one who is unable to care for themselves. Sometimes they don’t have any choice in caring for this loved one; and sometimes they aren’t even sure if they even love that loved one anymore!

Many times the caregiver doesn’t even consider themselves a caregiver…which is where I found myself just a few months ago.

“She drew an unsteady breath. Yes, he has problems, and yes, I struggle with my feelings toward him all the time. But he’s not a bad man and I know that part of me will always care for him. Sometimes, I feel like I’m the reason he’s able to function as well as he still does…’

These words from the Nicholas Sparks book “The Best of Me” could be written by me about the journey that I am on with my husband who has vascular dementia. We have been on this journey for quite a long time; yet I have just recently realized that I am a caregiver. And, there have certainly been times when I wished I could walk away from it all!

I questioned the idea of my being a caregiver for several reasons:

  1. My husband is still capable of handling many things on his own: dressing and bathing himself; eating/or feeding himself; warming up leftovers in the microwave; driving and getting where he need to go by himself; various other chores around the apartment.
  2. My husband’s dementia was caused by small strokes that damaged the memory portion of the brain; as far as we know, there have not been any more strokes and he has been somewhat stable since the diagnosis; but he is now getting worse.
  3. We have not had the same doctor for quite a number of years due to changes in insurance coverage and having to switch to different doctors. The doctor who was originally treating my husband is no longer in practice. So, there hasn’t been any consistent follow-up of the diagnosis.
  4. My husband’s personality has sometimes been a little abusive (verbally and mentally) and I was not able, at first, to decide if it was personality or the dementia that was causing these outbursts.

Yet, there are things that my husband is unable to do: cook a decent meal (using the stove rather than the microwave); make a budget and buy nutritious foods and items needed rather than snacks and munchies; handle the checkbook and finances; make doctor’s appointments; order prescription refills and setting up his daily doses of medications.

In addition to the above reasons, my husband is good at hiding his hearing problem – he just nods his head in agreement, or assumes he knows what has been said. And he is even better at covering up his forgetfulness; he just repeats the same questions multiple times if he is unsure or has forgotten. In the beginning, I just didn’t realize he was covering up.

Recently, I participated in the write31days.com challenge to write on a particular topic for the 31 days of October. I shared the journey with my husband’s dementia using the title “Dementia’s Demands”. During this time I was encouraged and supported by a wonderful group of bloggers who were also participating in the challenge; many, as I later learned by reading their blogs, were also on a journey with dementia, cancer, depression, and many other difficulties. Many were, in one form or another, a caregiver. Yet, looking at their pictures – they didn’t look much different than I or anyone else! As the days of that month continued, I discovered that – yes! – I am a caregiver! I “care for” someone who is unable, in many ways, to care for themselves. This, in itself, makes me a caregiver.

Are you struggling with that identity? Think about it…you may well be one, too!

For more on caregivng from Barbara’s London go here::http://scrapper123.blogspot.com

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NaBloPoMo November 2014

The Face in the Mirror

Caregiver in the mirror

Image Courtesy of the Caregiver Space

Reflections on Caregiving

by Bobbi Carducci

The face in the mirror evolved as you did. When you came to live with us I gazed on eyes full of hope. In my care you would do well. When you needed anything, I would provide it. We would share our stories and laugh or cry when feelings overcame us in the telling. For a time we did well.

Everything changed.

The face in the mirror reflected worry lines etched deep into my forehead. What was I doing wrong? Day by day, month by month, you slipped away. Would you know me today? When your memory left me behind, where did you go? And when, if ever, would you be back?

Time passed.

Eyes rimmed in black stared back at me. No sleep. Constant stress. You needed all I had to give and more. What we were to do, the two of us? We were at cross purposes fighting the same battle. You were determined I would not win. Every night I cried.

You are gone.

The face in the mirror is forever changed. In your living and your passing you left your mark on me. All the fear and loss, hope, love and laughter are reflected in my eyes. Every night I pray for you and hope you do the same for me.

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NaBloPoMo November 2014

Give a Caregiver a Bath

take a bath“November is National Caregivers Month. It is a time to acknowledge the important role that family, friends and neighbors play in caring for sick, elderly and disabled friends and relations.” From the Department of Health – Administration on Aging

It is also a time to support the men and women who are currently caring for a loved one at home. You may have offered to help many times only to be thanked politely for the thought and never taken up on your offer. Some of you may have started to wonder if she really wants help. Maybe she prefers to play the martyr and do it all herself and whine about how hard it is in order to make you feel guilty.

“Why should I keep offering if that’s the way it’s going to be?” you may have asked yourself.

The answer is, “Because she needs help. She wants help. If she doesn’t get help she is going to break under the pressure.” Often she doesn’t know what to ask for.

When my husband and I first announced we were bringing his ill father to live with us, many well meaning people assured us they would be there to help when needed, and they meant it. I remember saying, “We are going to need some time off once in a while so we can go on vacation or out to dinner. It will be great if I can call on you then.”

“Of course,” was the answer, and they meant it.
I didn’t know then that going out to dinner or taking a vacation would not be what I would come to need most. As my father-in-law’s illnesses progressed what I longed for was an hour to take a long hot shower or to soak in tub of water up to my chin until my fingers and toes turned pruney. I’d have done just about anything to stop listening for signs he was in distress or that he somehow knew I wasn’t paying attention and had decided to go down the stairs unattended, risking a fall. Even an uninterrupted ten minutes on the toilet would have been a gift on some days.

I remember one morning in particular. He’d had his breakfast and I had helped him wash and dress. I’d seen to it he had his medications and the TV was tuned to his favorite show. He should have been good for at least thirty minutes. I was about to start a load of laundry when my I felt the sudden urge to pee. I had just settled on the toilet when I heard him calling.
“Bobbi! Bobbi! Come quick, I need you!”

He sounded so frantic I was afraid of what I would discover when I got to him. I jumped up in mid stream, pulled my pants up, and ran up the stairs.
“What’s wrong?” I asked, ignoring the warmth running down my leg.
“The TV’s gone berserk. I can’t get any channels.”

I bit my tongue, fixed the TV, and went to my room for a quick wash up and change of clothes. Clearly it was going to be one of those days.
If anyone had asked what I needed that day the answer would have been quick and easy.

“I need a bath.”

November is National Caregivers Month. The gift of time is precious for those for whom every moment counts. When wondering what you can do to help, consider stopping by a caregiver’s home someday. Maybe she’s wishing for a bath too.

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NaBloPoMo November 2014

A Feeling You Wish You Didn’t Have …

The anger ebbed and flowed. The first time it hit me, right after Rodger returned home from an extensive stay in the hospital, I thought I was losing my mind.

I’d just spent months watching his mental health deteriorate as unbeknownst to me he’d been “cheeking” the medication for his  paranoid schizophrenia and spitting them into the toilet once he got out of my sight. His medication had been adjusted up and then down, brands were changed and consultations scheduled over and over again.

Then it happened. One sunny Sunday afternoon he lost his mind. Accusing me of trying to poison him; he ran down the street, moving at a pace that would normally be impossible for a man nearing 80 years old.

“She’s trying to kill me!” He insisted, shaking with fear whenever I got too close.

He spent eight weeks in the psychiatric ward that time. Discharged on a Friday afternoon he was back in the hospital Sunday evening. He had pneumonia. They had sent him home sick. After a week in ICU he was finally well enough to go into a medical ward. He’d also developed swallowing problems somewhere along the line. He had to have his food pureed and his drinks thickened. He refused to eat slowly and take small bites as the doctor ordered. As soon as his tray arrived he’d grab a spoon and start shoveling the food into his mouth as fast as he could and then he’d choke. So a nurse fed him each morning and I made sure I was there for lunch and supper. Three weeks later he was finally well enough to go home. Once there he seemed determined to start the dance all over again.

“I can take my medicine myself,” he declared almost immediately upon returning home.

The anger reared its ugly head for the first time as I contemplated the downward spiral that would inevitably ensue if he were allowed to have his way.

I tried to pretend it wasn’t there but each time he tried to convince me to give him his pills it grew stronger. I was royally ticked off that he would even try to manipulate me again. I knew he would again lie and insist he was taking his medication when he wasn’t. I was furious that he would subject me and his son to sleepless nights and hours of driving to and from the hospital to assure he received proper care. I resented that he seemed to think he was smarter than me.

There were moments when I had to walk away as soon as he entered the room. I didn’t even want to look at him. I was racked with guilt and questioned my basic humanity. How could I possibly be angry with this sick old man? The guilt was overwhelming at times. I prayed, I vented in the car when I went to the grocery store and cried a lot.

I finally got some relief when I admitted my feelings to my husband.

Mike assured me that it was normal to feel the way I did; that the job I’d taken on was harder than anyone could imagine and what I was feeling was normal. I had nothing to feel guilty about. He took a couple of days off from work and encouraged me to get out of the house.

“Go see a movie. Get a massage. Pamper yourself,” he whispered as I cried on his shoulder, relief mixing with the overwhelming sadness that I finally allowed to engulf me.

I couldn’t concentrate on the movie. I spent the entire time in the theater trying to figure out what was wrong with me. I passed on the massage. I don’t like strangers touching me. But I did go to the gym. An hour of aerobics helped ease the tension from my shoulders and neck. It felt good to sweat and push myself again. The next day I went for a run on the treadmill. It was there that it all came together for me.

I wasn’t just mad at him for trying to take control of his meds. I was mad at him for tricking us and causing so much trouble but I was really mad at him for not appreciating all I had done and all I had been through. While I was busy caring for him I’d lost my own mother to non Hodgkin’s lymphoma. She was gone and he was still here. She took all her treatments and she died. He refused to do what he was supposed to do and I got to nurse him back to health. It wasn’t fair. He should be fighting with all he had just as she did. If anyone should still be here it should be…

In that moment I heard a soft voice whisper… “It’s not up to you to decide who lives.” And then I heard a short and very special phrase that rings true no matter how often it’s repeated. “Let go and let God.”

I found myself nodding my head in agreement and moments later I began to feel better. I was able to go home refreshed and take care of Rodger again.

It’s not a cure-all. The anger and resentment still came back sometimes when he was acting out. And I’d even gone so far as to tell God he had better get busy as I’d let go a while ago and he didn’t seem to be doing anything to help at that time. But finally recognized it for what it is.

Rodger was doing the best he could with a mind that was failing in spite of all the love and care and medication he was getting. And I was doing the best I could in spite of all my weaknesses and doubts. And God? He was there running alongside me on the treadmill, reminding me to take care of myself too.

So this is my reminder to you. Take care of yourself as well as you take care of your loved one. Go to a movie, get a massage, pray, get some exercise, sing at the top of your lungs, sob in your best friends arms, whatever it takes – do it.

Related articles

The Colors of Caregiving

50-Shades-of-Caregiving-1

Colorful is not the way one would typically describe the life of a caregiver but once my father-in-law, Rodger, came to live with us my days began to revolve around the colors of his life.

Outwardly he appeared to be a drab little wren of a man. All his clothing was either brown or grey, the monotony broken only by one of the muted plaid shirts he saved to wear for an appointment with one of his many doctors. His lined, expressionless face would have been a blank canvas if not for deep brown eyes topped by grey eyebrows so overgrown they rivaled those of the late Andy Rooney. When he spoke there were no colorful sayings to add interest. ‘Just the facts, Ma’am.’ Everything about him seemed designed to blend into the background. At the time I didn’t think to question why he was so determined not to be seen or what he might be doing when he thought I wasn’t looking.

Every day started and ended with a rainbow of colored pills, red, yellow, white, green, blue, pink. Some were taken once a day, others two or three times a day, to treat or control his mental illness, Parkinson’s disease, heart disease, Dysphagia, and various infections that seemed to pop up as often as weeds in summer. In between doses, billowing clouds of vapor from breathing treatments to ease his C.O.P.D. wafted out of his room. He counted out is various medications and filled his pill box weekly and he religiously filled out a mail order form when they began to run low. He knew when it was time for each pill and never failed to take them on time. Or so it seemed.

I should have known what he was doing when the symptoms first appeared but I was still too green to know how devious he could be. Even his doctors were fooled until they day his mind shattered into shards of throbbing suspicion. As I write this I try to imagine what a psychotic break looks like. I picture it as a swirling mass of colors so bright they burn his soul leaving him decimated and his caregiver shrouded in deep, purple guilt.

Eventually I discovered that the anger and resentment I sometimes felt when dealing with the daily stress of life as a caregiver could hide in a fog of grey fatigue or the flashing colors of an aura signifying the onset of a migraine headache causing me to scramble to find what I could to minimize the pain.

Fortunately, not all the colors of caregiving are dark or somber. If they were we couldn’t do it. I treasured the bright blue moments of clarity whenever they appeared. Like the day he told me how he and his brother would roll up the carpets in the farmhouse kitchen, when they were young men living in Italy, in order to dance a tango with girls from the village. Was that a hint of pink pride on his face at the memory of holding a pretty woman in his arms? I basked in the bright yellow sunshine of joy when he gently held his newborn great granddaughter, Ava, for the first time, his eyes full of love for the tiny creature gazing up at him.

Yes, being a caregiver is a very colorful occupation. When Rodger passed away, once the worst of the grieving passed, I realized that the moments we shared, the good and the not so good, would forever be part of the richly colored tapestry of stories being woven by caregivers who tend to their loved ones every day and I am grateful to discover there are places like this where we can share them. What are the colors in your story?

Note: This post first appeared on The Caregiver Space in 2013 under the title, 50 Shades of Caregiving. I am honored to be a guest blogger for them in addition to writing here as The Imperect Caregiver. You can also find caregiver blog postsby me on AgingCare.com

 

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NaBloPoMo November 2014

 

 

 

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