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.

http://drphilfoundation.org/

http://www.drphil.com/

@DrPhil

https://www.facebook.com/drphilshow?fref=ts

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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.”

GET THE HELL OFF THE MOUNTAIN

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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

 

 

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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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

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.

Magnitude

  • 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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Good Morning Caregivers

 

Lord for those who are hurting

My prayer for you today. Blessed be.

 

 

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

DNR … AND

 

DNR or Do Not Resuscitate are not terms I ever wanted to associate with my father-in-law, Rodger. I knew he was failing every day and the nurse and social worker would arrive soon to process the paper work to set things in motion for home hospice care. Intellectually I knew what it meant. Comfort care only. In many ways that would be a blessing for him. There would be no more needle sticks for blood tests. No more medicine in apple sauce several times a day, made necessary by his increasingly severe swallowing problems. For months his diet had been restricted to pureed foods and thickened liquids. Parkinson’s disease, schizophrenia, dementia, and congestive heart failure had robbed him of the ability to walk, eat, or reason. He slept most of the day, every day, only to come awake agitated and afraid throughout the long nights.  His once powerful body was frail and painfully thin.

“I’m going to die soon. I had a dream last night and God told me my work here is done,” he’d told me the day I knew it was time to start looking into hospice care.

“I don’t have a good feeling about this one,” the hospice nurse reported to the doctor on the other end of the phone shortly after assessing him. “We need to get a hospital bed and a comfort kit here as soon as possible.”

She ended the call and turned to me to explain that the comfort kit would contain medications to keep him comfortable and pain-free without prolonging life.  A bright yellow document with the word DO NOT RESUSCITATE across the top was to be taped to the refrigerator to alert any emergency medical personnel entering the house that CPR was not to be administered.

“I know this hard,” the nurse said. “But it’s the kindest thing you can do for him now. CPR is brutal and in cases like this it’s cruel.  He is so frail it will most likely break his ribs and that in itself will kill him.”

“I know. It’s just that it feels so wrong. I hate seeing DNR emblazoned across that ugly yellow paper every time I enter the kitchen. Even though I know it’s inevitable I don’t want to lose him. ”

“Death is inevitable for all of us. All we can do is make it as comfortable as we can. Try not to think of it as DNR – Do Not Resuscitate. Think of it as AND – Allow Natural Death and make it your final gift to him.

And that’s what happened. When the time came he passed away naturally. Free of pain and at peace with his family at his side.

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It’s Too Hard to See Him Like That

Caregivers,  often do you hear those words from family members trying to justify avoiding your loved one. For refusing to help even long enough to give you a few hours or days of respite? They may feel that upon hearing those reasons we will understand that they would like to help but they simply can’t.

Unfortunately, what they are really saying is:

“It’s too hard and it doesn’t matter how it affects anyone else. It’s not about Mom or Dad. It’s not about our brother or sister. It’s about me and how I feel.”

Some common comments and my responses follow. As the Imperfect Caregiver I speak for you so you know you are not alone.

“Mom doesn’t know me anymore so why bother visiting? When I do come by all she does is repeat the same stories over and over. It’s boring and irritating. I can’t take it.

 “I feel that way sometimes too. That’s why I need your help. Why can’t you understand that?”

“She was up all night for the past two weeks and you desperately need sleep? Take a nap during the day when she does. What’s your problem?”

“It’s not safe. If she wakes before I do she could leave the house and wander away or decide to cook something and forget it on the stove causing a fire. Could you nap under those conditions?”

“He’s combative and accuses you of stealing from him? What did you do to set him off? What do expect me to do about it?”

“I didn’t set him off. The disease did. I don’t expect you to fix it. I need you to understand what this terrible disease is doing to him.”

She seemed fine to me the last time I visited.”

If that’s true  and she is fine,why don’t you come more often? Why are you too busy to give me a break?

“My father would never use language like that! Why would you say such things about him? I think you’re the one who has a problem.”

Yes, I have a problem. It’s trying to deal with all this and you too. Would you like me to tape record him for you?

“A nursing home? Never! I promised Mom we would never do that to her.”

“We also promised to take care of her. When did “we” become only me?”

“If things are so bad put her in a nursing home. What do you mean you need help to pay for it? What about her social security and Medicare?”

 “The facilities that would take her for what little she receives are full with long waiting lists and you clearly haven’t seen what goes on in those places. Someone would have to be there every day to make sure she got the care she needs and we know who that would be.”

***

Feel free to share some of the comments you hear from family members in the comment section below. It helps us all to know we are not alone.

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