The Face of a Caregiver

I usually avoid cameras. I prefer the illusion that I look better than whatever shows up after the click or whirr that indicates my image has been recorded digitally or on film. Today I am shedding my vanity to show you what the face of a caregiver came to look like.

caregiving pic Bobbi

Bobbi in 2005 – three years as a caregiver. Four more to go.

When my father-in-law came to live with us I had a full time job. I went to the gym every day. I slept well and I ate right. All the things a caregiver is advised to do. Little by little it all fell away.

First the job went. My boss was understanding. I was even offered the chance to work from home most of the time and go into the office only as needed. We tried it for a while. It didn’t work. I was failing there and at home unable to give either the attention they needed.

Next to go was working out at the gym.  A half hour drive there and back plus an hour workout was too much time away. It wasn’t safe long before he needed constant supervision. He’d forget things on the stove and, for some reason, he liked to dry wet tissues on the light bulb of the lamp in his room. The risk of a fire scared me so much I bought a baby monitor to keep an eye on him.

Eating right was next to go. My diet became much like that of an exhausted mother of a newborn or a temperamental toddler. Feed him and grab what you can. The remains of sandwich here, a few chips there. Every now and then a yogurt cup to convince myself nutrition hadn’t fallen by the wayside entirely.

Getting enough rest became a hope for the future. A future I didn’t dare admit I thought about for it meant he would be gone and to wish for this dreadful disease to be over was wrong, wasn’t it?

For seven years I did the best I could. He did the same. It took a huge toll on me. It took his life away. I miss him. I would do it again if needed.

It’s important that people understand how hard it is. Perhaps by sharing what the face of a caregiver becomes someone, maybe even Dr. Phil, will get it. Caregivers need help. Caregivers need you.

Bobbi now

Bobbi on July 26, 2014 as we honored him on his birthday and shared his story with the public for the first time.   I look years younger and feel it as well. I hope he was smiling along with me.

More voices urging Dr. Phil to help caregivers.

Diane Waterman – Comment: I didn’t see Doctor Phil’s show, but I can tell you from experience, being a caretaker to someone sick or elderly could never pay enough for what these people do. I cared for my sister with help from my children, for the last months of her life. She had Lung Cancer! I have Fibromyalgia myself and was dealing with daily pain. I did everything I could to take care of myself, if it wasn’t for my own adult children, I would not have survived. They gave me breaks night time. The whole year was cruel in many ways, I had to deal with a very dysfunctional family as well! I was relieved when she finally passed on July 10th 2013, not only for her , but for myself!!  RIP Mona, I love you and miss you! Xoxo

Pamela Lynne Kemp  – Comment: Thank you to everyone for sharing your story.  You speak for so many of us.

Beth Anderson – Comment: I am full-time caregiver for my Mom who turns 85 in a couple of weeks. My mom has Alzheimer’s and Dementia as well as numerous other ailments. I have been Mom’s full-time caregiver since 2006 and after a recent fall, I am with Mom 24/7. I split my time at her home and bring her home with me for what she calls ” a mini vacation.” I am not a saint or looking for recognition, I just realize that it take a special person to take on the role of caregiver. I make most of her meals, take her to all of her appointments, set up her medications, bathe her, clean her after messy bathroom visits, take her for walks, take her to the nature center, the pumpkin patch, graduation parties, weddings and if my husband and I take a vacation, Mom goes along. I get occasional breaks, thanks to two of my sisters, but their work schedules are a usually a conflict. My husband has been so supportive through this chapter in Mom’s life as difficult and exhausting it may be. People do not know my story, as I do not know other people’s stories. With that being said, be kind to everyone. Offer assistance whenever you can. Smile, even though you don’t feel you have much to smile about, it could make all the difference in the world. Stay positive! Thank you to all caregivers, I am walking in your shoes! Love you Mom!

Sherri D – Comment: I’ve been caring for my severely disabled son for almost 15 years, with many more to go. Some say it’s my duty as his mother and they may be right, but it’s BC I LOVE HIM I have up my life for him. I’m coming out of a second marriage 😦  I don’t go anywhere with friends or much else. I used to be a dance teacher and dancing was my life. Now I’m a stay at home mom… Lonely and tired. With no relief in sight.

Linnea Hedborn – Comment: I am primary caregiver to my 95 year old mother. Every single day is a battle to be heard by her doctors and my family. I can’t let down for one second…not one. I have to keep so many different balls spinning in the air, no matter what my own financial situation (dire) or mental and physical health is. The latter is going fast. To be told to “take care of myself” is patronizing and unhelpful.

Stacey Belt – Comment: I have quit jobs to care for three family members who have now died.  I now need help and find myself unemployed, homeless and about to fight melanoma for the second time.  Guess what? I have no one to care for me, no one, zip, zilch, zero!  I gave up everything three times to care for family and now the best thing that can happen is I die quickly since I am homeless, jobless, penniless and have no support!! That’s the thanks I get! But hey, God has a special place in heaven for me or so I’m told! What a great thing to look forward to right?!

To contact Dr. Phil directly and ask him to accept my challenge to offer real help to caregivers go to the following links.


If I Tell You I Need Help – Do Not Take It Lightly


Being told you are appreciated is something caregivers rarely hear. The people in their care are often to ill or too confused to be aware of everything their caregiver does every day.  Family members who are too far away or too busy with young children, jobs and everyday life often take caregivers for granted. Far too often they drop in to question and or criticize decisions that only someone who lives with these terrible diseases know enough about can make.

Yes, appreciation would be nice. But, make no mistake, it’s not why they do it. They do it because the need is there. They do it out of love. Many spend years caring for people who have abused them in the past because no one else will.  They don’t do it for appreciation but it would be nice to receive some once in a while.

More than the precious the moments of sincere appreciation caregivers need help. Don’t take my word for it. Read the following comments from caregivers responding to the Dr. Phil Challenge. (More to come tomorrow.)

Electra Posada – Comment: I am a paid caregiver, but I started by taking care of my father when he was dying from metastatic melanoma that had spread to his brain when he was 48. And yes, it was EXHAUSTING! I had one break for dinner out during the 5 months I was with him. I had to take away his keys and explain to him that he couldn’t drive any longer. I ended up having to try to feed him, but he was not eating by that time. I also had to clean out his mouth and brush his teeth when one of his tumors ruptured and gave him a massive nose bleed the night before. I was holding his hand when he died. I was 24 and not prepared for such things, but he wanted to stay home and wanted my sister and me to be his caregivers during the last 6 months he knew he had on this earth. This is just one story in millions people go through every day. We ask you to support and honor what we as caregivers do. We give a huge piece of ourselves, both physically and emotionally in order to make another person as safe and comfortable as possible in their time of recovery or facing the end of their lives. Thank you for helping us shed light on the difficult path we are called to take.

sheila hare – Comment: I challenge dr. phil to this as well good luck and hope to get answers  I work as a cna   since 93  and now  I take care of mom too she is 88 my sis lives in another state their is no one else  I work it live it  but I still love it  is my health going o yes ive gained weight again  single  who wants  a fat girl  and cant leave to go anywhere   well hopeing  he will create a spa for caregivers  we talk about this all the time calgon take me away!

Dylan Fliers – Comment: I am a caregiver and as I watched this segment of the show on it’s original air date, I thought it was completely useless as well.

Jennifer Pepera – Comment: I challenge you too!:) I am a caregiver to my 81 year old Mother.I would love to see some shows regarding this topic please.

Renee Herndon – Comment: There are too many caregivers to count, both full and part-time who give selflessly and without pay, or often any breaks or support from anyone else. You let us down and didn’t adequately represent what we go through or offer any true help or advice.

Dawn – Comment: Dr Phil … I am a single Mom of a 22 severely disabled Son requiring 24/7 care.  Additionally I work an extremely demanding job as an insurance consultant that is way more than a 40 hour work week.  My back-up is my 13 old son.  I eat right, try to get rest…we all know that.  What we need is help.  I’ve spent numerous days and hours advocating for our children with no voices at the Legislative Office Building in CT an effort to get funding and assistance.  What many don’t understand is the impact it has on the entire family unit.  Please help us as you are so kind in helping others.

Tobi – Comment: I’m a Personal Support Worker and see the burnout of many family members taking care of their older parents and it is heartbreaking what they give up. I know of a special woman who has given up everything to live with her elderly parents and help them. she is also a very smart woman and knows that she should take better care of herself and she tries, but her parents are always on her mind. I think there should be a lot more education to the caregivers about programs to help the caregivers out more and make their life a little easier. I think they should be educated on the funding’s for renovations on homes to make it life easier for the elderly. Programs like multiple home care companies to come in and assist with chores and take the weight off the caregiver. There are companies that make nutritious meals and be delivered to your door. Apetito is one such company then there is meals on wheels. I think Community care should be paying more visits to the homes and talking to caregivers alone about what help they need. I’m always looking for ways to make my clients and their families life easier for them. It’s hard when you don’t know what direction to look in.

Michelle Morrison – Comment: I am full time carer of my father who has LBD, Parkinson’s. I hate how I need care yet the resources go only him the one over 65. It is a two way street. If I was not his daughter the person who baths him, washes the clothes, feeds, administers meds, etc. would expect compensation, and rest. I get advise. I get how dare you expect anything. Help those keep those with these conditions in a homey loving place not the pasture as my father has called nursing centers.

Beth Tomac  – Comment: Where I didn’t see the episode, I do agree that caregivers need help taking care of themselves.  I know this from personal experience as I was a caregiver for a 91 year old woman with early signs of dementia.  I was a live in caregiver for 2 weeks straight without being able to take myself or the woman out of the house.

Yvonne Holloway – Comment: Please help we all need a break.  I just got told by thr sister of my momI’m doing a terrible job and that I should get away as much as possible.  Yet all medical personnel tell me she should not be alone. Plus my mom says she does not need any help.

a. fry – Comment: AMEN! I’ve been there, done that more than once. 10 years ago, it was my in laws ( RIP) Right now I care for not only my ill spouse who had a stroke, is diabetic, has severe eye problems ( NOT from the diabetes) and aphasia ( can’t understand half what I say), I also have a 30 year old son who is bi polar one that I help manage his finances and health care, etc.

We share housing and costs with another couple in the almost the exact same boat. If we were not supporting each other, sharing expenses and giving each other breaks so we can at least get to the grocery store without paying for help, BOTH our spouses would be in  nursing homes! NO, there is NO covered care where we live for family caregivers. Our families ( and most of the general public) have NO concept whatsoever what REALLY goes on to spite us trying to tell them numerous times. One of our children was actually barred from the home due to stealing items, harassing for valuables and threatening us because they were more concerned about their “entitled” inheritance than whether we got proper care for our spouses.  Do NOT coddle us, smile and say how fantastic we are. We do NOT want to hear it. We want our health care system to DO SOMETHING!If I tell you I need you

To Contact Dr.Phil and add your voice to mine click on the links below.   @DrPhil



Good Morning Caregivers – Get Off My Mountain

Many paths to success

Just as there are many paths up the mountain there are the many paths of caregiving.  How ours will twist and turn depends on the reason it began in the first place and how the one in our care responds to the many obstacles in the way. Will he reach for me to guide him along the way or will he insist on refusing my help only to fall and accuse me of pushing him?

Every day, around each new bend, we are faced with something unexpected. It could be a breathtaking moment when the air clears and the sun breaks through the clouds of confusion and he smiles. I feared I’d never see that twinkle again. “Thank you, Lord,” I whisper.

Far more likely it’s another loss making every step we take together more difficult. Our path is longer and far more arduous than we could have imagined. It is also the way that works for us. We figure it out as we go along.

 The last thing we need is “the one who runs around the mountain, telling everyone that his or her path is wrong.”

Unfortunately there seems to be as many of them as there are of us. If you are dealing with someone like that send them this Hindu proverb and tell them the Imperfect Caregivers says, “You are not helping. You are making things more difficult.”


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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.”


“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:

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NaBloPoMo November 2014

Good Morning Caregivers

An Army of One

Look around. Whom do you see? Women, men, teens, grandparents, spouses, sisters, brothers, friends, significant others.  Nurses, home-health aides, doctors, Visiting Angels, hospice care workers, social workers. Priests, nuns, ministers of every denomination. People of all races and ethnic origins.  All across the world, in every country, we are there. We are the caregivers.

Yet we are alone. Every story is different. Every caregiver fails in his or her own way. The guilt eats at us. The lack of sleep drains us. The accusations of neglect and abuse by loved ones suffering from dementia or brain injury haunt us day and night.  We feed and clothe and them. We bathe them. We cry for them and with them.  We love them. And some days we don’t like them. We go to battle for them and we beg for some time away.  We are part of you and we are alone.

My husband and I planned for the time when one or more of our parents would need care. We would bring them into our home and provide a safe, loving place for them as longs as it was needed.  It would be hard but hard is what life is sometimes.

Living with and caring for my father-in-law, Rodger, was far more difficult than I ever imagined.  I never suspected his quirky behavior was due to schizophrenia first diagnosed in his early twenties. A diagnosis long hidden from members of the family, including my husband and me. Not only had the disease affected his life but so had the years of powerful drugs that enabled him to function.  His memory and ability to reason were vastly diminished. Suspicion and paranoia made it impossible for him to trust me while I, innocent that I was, trusted him when he said he took his medication.

Although he lived for five years after his last psychotic break he never really recovered from it and the near fatal bout of pneumonia that he came down with while in the hospital.  After that came the heart attack, followed by surgery to implant a pacemaker. The pacemaker led to blood clots forming in his arm.  Blood thinners requiring regular blood tests caused him great anxiety.

“What is the government doing with my blood? Why do they need so much?”

My suspicion that he was developing Parkinson’s disease was deemed incorrect until months later it could no longer be denied. It ran in his family and his sister had recently died from it.  He needed a walker and could no longer use the stairs. Severe swallowing problems meant pureed food and thickened liquids made up his diet. I learned to cook food that tasted good and offered as much nutrition as possible but even I had to admit it looked awful.  Dementia came next bringing the phenomenon of sundowning along with it.  No one slept much once that started.

When people learned I was a caregiver they would say they understood. Some may have, on some level. But, I knew deep in my heart that they could not really know how it was.  How could they?  His life was his own. His back story defined who he became.  His history of illnesses was as convoluted and complicated as his mind.  He needed so much. What he got was one woman, part of a vast army of caregivers who tend their loved ones alone.

Some Caregiver Statistics from The Family Caregiving Alliance

Who are the Informal Caregivers?

Although there may appear to be wide discrepancies in estimates of the number of informal caregivers in the U.S., the figures cited below reflect variations in the definitions and criteria used in each study, e.g., age of care recipients surveyed or relationship of caregiver to care recipient.


  • 65.7 million caregivers make up 29% of the U.S. adult population providing care to someone who is ill, disabled or aged. [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S. National Alliance for Caregiving. Washington, DC.] – Updated: November 2012
  • 52 million caregivers provide care to adults (aged 18+) with a disability or illness. [Coughlin, J., (2010). Estimating the Impact of Caregiving and Employment on Well-Being: Outcomes & Insights in Health Management, Vol. 2; Issue 1]Updated: November 2012
  • 43.5 million of adult family caregivers care for someone 50+ years of age and 14.9 million care for someone who has Alzheimer’s disease or other dementia. [Alzheimer’s Association, 2011 Alzheimer’s Disease Facts and Figures, Alzheimer‘s and Dementia , Vol.7, Issue 2.] – Updated: November 2012
  • LGBT respondents are slightly more likely to have provided care to an adult friend or relative in the past six months: 21% vs. 17%. [MetLife: Still Out, Still Aging 2010. Study of Lesbian, Gay, Bisexual, and Transgender Baby Boomers]Updated: November 2012

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A Hug For You and Your Loved Ones


hug 3

This is the final day of National Blog Post Month and I met my goal of posting a blog a day. It’s been difficult at times to find something meaningful to share with you. Not that I don’t have anything to say, there is so much more to our story I am confident I can write about caregiving for many years to come. The sometimes difficult part is to be inspired on any given day to the degree that will honor all that you do.

This weekend two of my youngest granddaughters were here over night. They ran me ragged and I loved every minute of it. They just left with their Mom. I knew it would be exhausting but I want to spend as much time with them as possible while they are little and I am still able to hold them on my lap and tell them stories. One of the things I treasure most about these visits  is the hugs. Tiny arms wrapped around me always bring me a sense of peace and an outpouring of love.  It doesn’ matter how young or old we are, a hug is one of the greatest gifts we have to offer.

Hug your loved one today. You will both be enriched by it.

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You Held My Hand


As a child you held my hand

Hands reaching for one another speak to me as you can probably tell from this image as well as the images on the cover of Confessions of an Imperfect Caregiver and my business card. They remind me of the innocence of my childhood and the many times I reached for the hand of my mother or father and the sense of security their touch inspired.

And of course I’ll never forget the first time I held the hand of one my four babies. The tiny fingers would wrap around one of mine as we bonded body to body. I held their hand when they took their first wobbly steps.  When they prepared to walk into school for the first time I felt the loss as their grip loosened and they began to slip away from my protection.

Now I hold the hand of my loved ones as we take our final steps together and although it is the hardest thing I’ll ever do it is a gift I will not shy from.

As a child you held my hand … Now is my turn to hold yours.

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NaBloPoMo November 2014

A Bit of Humor To Get You Through

As you continue to care for your loved ones and prepare to recognize the Thanksgiving holiday in a way that is best for you and your family; I offer a bit of humor in the hope of bringing a smile to your face.

survive the week

And in honor of your making it through as I’m sure you will, you are a caregiver after all, here is your sparkling helmet.

sparkle helmet

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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 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::

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NaBloPoMo November 2014

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