vanessa: ideas and images: CAREGIVER DIARIES: RUN, TELL THIS

Yesterday, at AARP's Family Caregiving Executive Summit, Dr. Scott Kaiser said, "In many ways, there's this confusion that mirrors our society's confusion about what it is to be a caregiver. Is it a duty? Is it a chore? So many people are caregivers, but don't necessarily identify...We can improve the lives of family caregivers in this country-- starting today."

I was watching The Bipartisan Policy Center's family caregiving webcast this morning and heard, "Now, we live with chronic disease for years, with our family taking care of us--struggling to take care of us...Continuum of care has essentially been all about acute..."

I'm so glad these conversations are being had.

Since late 2005, each time my Dad fell ill, and the question of acute or permanent care arose, he adamantly expressed that he wanted to remain in his own home.

For the first time, this year, as his discharge date approached, he felt he needed more therapy as opposed to going home.

This time, his condition demanded that his left leg be amputated above the knee.

This time, the road is more difficult, but it isn't impossible.

His progress has been slow, but awe inspiring. He wants to walk again. He's a trooper. Once again, looking for the best possible facility was job one. Once again, arrangements, adjustments, and sacrifices had to be made. Once again, people who didn’t visit him when he was around the corner from them, are complaining about where he chose to be in order to receive the best care.

I can't say it enough. Caregivers need support--a team--a good, faithful, committed, understanding team.

It's comforting, and a bonus when you find that there are nurses, doctors, dieticians, CNA's and other medical professionals caring for your loved one, who are caring for their aging loved ones, too. They know what you're facing because they're facing it, too, and their words are more than encouraging.

The first time the idea of in-home caregiving was on the table and I volunteered, someone actually recoiled and snarkily said to me, "Well, you have to ask him if it's okay."

I didn't know what to make of that at the time. My Dad, who had never indicated any sign of weakness, illness, or vulnerability, needed help. His doctor said as much. "Your father cannot live alone anymore." I figured, "I'm his daughter, and I have the time and wherewithal to help him".

Someone who couldn't, and didn't want to do it, however, decided they had the authority to determine that I needed permission to help my own father!

Me and my dumb self, actually went and asked my Dad, and well, the rest is history.

It stung when that person treated me as if I was some incompetent stranger. It was perplexing then, but it has since revealed so much that I needed to learn, and wouldn't have, had I not volunteered.

These days, I've chuckled each time my Dad has expressed his appreciation. I tell him, "It's okay. I don't have anything else to do."

I think about what that person told me years ago, and how it made me feel. I've long since rescinded the power I had given them. I now see them for who they are. They're very good at smear campaigns when they can't get their way. I've seen them demonize other people. I don't know why I didn't see my turn coming. Even with my Dad, it was all about what he could do for them, and when he finally got a clue and called them on it, they suddenly changed their opinion of him, and had no time for him.

It always amazes me that after all this time, there are still people who endeavor to make caregiving harder.

My grandmother used to liken the behavior to one who throws a rock and then hides his or her hand. There are those who actually think things are all about them, and their wants and wishes. There are those who act as if you work for them as opposed to your loved one; those who think it's prudent and wise at any juncture to attack; those who talk an awful lot about you and the situation, but you rarely see them.

I know that there have always been those who were hoping that I will fail, or abandon my Dad; who attempted and failed to poison my relationship with him. Their plotting and meddling and micro-managing, and my struggle to defend myself used to be stressful, time-consuming, time-wasting, and infuriating. Now, I just feel very sorry for them.

Is it that they don't want him to HAVE help, or is it that they'd rather it not be ME providing it?

I know my Dad very well. He's a fiercely independent, family-oriented, religious, opinionated, man's man, patriarchal, right-fighting, chauvinistic piece of work, and can be stubborn, mean-spirited, critical and difficult, but he's my Dad. THAT'S my motivation.

It has been 24/7 work.

It has, at times, been thankless, full of criticism, complaints, and accusations from people I least expected.

I know I am not legally obligated to be his caregiver, (Thanks, Judge Judy) but there is a moral duty. I am fully aware that this is a choice I made, so I suppose I never really had any expectation of anyone else. Genuine, meaningful help, I've learned, is a gift.

Have I wanted to quit on occasion? Absolutely. I don't know a caregiver who doesn't share my sentiments. A doctor friend recently told me, "Caregiving ages a person."

My back and knees have sent me sharp messages from time to time.

I don't recall the last time I slept for the recommended 8 hours. I've finally accepted that periodic breaks, maintenance of enriching activities, hobbies, nourishing relationships, good counselors, true friends, and qualified help are critical.

Although many of us have given it a good college try, experience and wisdom reveal--no--they SCREAM that caregiving is NOT a one-man or woman job. If there is meaningful help to be had, one should welcome it like rain on a hot summer's day.

I am an unpaid caregiver. That is not a complaint. It is a fact. Some people actually think that I am being given tremendous sums of money to help my Dad. I sure wish I knew where that cash was coming from, and where it's hiding! I'd like that new iMac Pro and a pedicure, and I hear Los Cabos is lovely this time of year. People have been whispering that I am living it up at his house, and taking advantage of his vast resources. Apparently plugging in my Dell Latitude D630 is sending the electric bill through the roof.

I've SEEN my own bank account, and I laugh at it enough for everyone.

As a pacifier, I've convinced myself that the $25.00 in maintenance fees that my bank takes from me each month, is supporting my favorite, local, public broadcasting station in their effort to air the documentaries I love. (I know. It's time to change banks.)

When I committed to be my Dad's caregiver, I was aware of every contingency, and what made me uniquely qualified, able, and available, to say "yes", however, there are those who apparently think I can exist on air, or am being supported by a leprechaun. I know better, so I am grateful for the opportunities to earn that have come my way at critical times. The shorter the duration of the assignment, and the closer to home the better.

I also have faith. God has always provided, and my needs are met.

The thought that I am being financially enriched in some way is driving some people positively bananas, to the point where they can't even focus on the tremendous progress he has made.

There are people who would rather see him in a sub-par facility, or permanently living in any nursing home, than to have me as his caregiver. The thought of having to ask me anything, or defer to me for information causes them to see red.

Over the years, my presence has thrown a monkey wrench in quite a few shenanigans.

My eyes are open now.

I don't always like or comment on what I see or hear, and the tunnel vision I seem to have developed concerning him, has shielded me from being blindsided by people who haven't even been around, but still want to be in-the-know, haven't helped, and haven't exactly worked out their own issues, arguments, or conflicts with him.

As a caregiver--and a human being--I refuse to be anyone's scapegoat or punching bag.

My aunt used to say, "Satan is busy, Baby."
He surely is, but, as a caregiver, you don't have time for him or his willing imps. There's simply no time or tolerance for people who, even through secondhand knowledge, should know the weight of caregiving, and the seriousness of your loved one's condition, yet still want to dump drama, mess, and foolishness at your feet every time they do bother to come around. There are those who come with a spirit of divisiveness and chaos. They come in with their "save the day" attitude, but are more like a bull in a china cabinet. They're all over the place, asserting their perceived authority, making boneheaded decisions, ignorant declarations, and undermining progress, but don't know a thing about what's going on. They hate you for knowing information, blame you for their ignorance, but there's no barrier stopping them from knowing, too. Skilled nursing facilities are public places.

As a caregiver, you have enough to deal with without taking on the guilt-ridden, unfounded issues and antics of those who feel justified and qualified to judge you and the situation from a distance.

Everyone, you will learn, is not in your corner--they've proven it by their own words and actions--so you have to stop appeasing and accommodating them. It's interesting how people don't ever offer help, and have declared as much, but are beside themselves wondering how you're managing without them.

There are times when it becomes necessary, for your own well-being, to distance yourself; unplug. Then, you have room for those who are helpful, nurturing, mature, wise, discerning, responsible, knowledgeable, trustworthy, honest, and genuine.

Every good supervisor I've ever had, taught me the importance of good documentation skills. I keep records on everything concerning my Dad. (Thanks iPhone.) Details matter. There's information I must keep track of. When his memory fails, mine has to kick in.

I also cover myself, because I know I'm being scrutinized, and I've learned not to put anything past anyone. Time and date stamps are your friends when you know there are people lurking who don't want you on the job, but they don't want it either.

I've consistently tried to keep others abreast of what's going on with him via texts, e-mail, photos, phone calls, etc., but even that's not good enough for some. Everyone wants their own personal run down, and if you tell one but not the other, you're accused of conspiracy and secrecy.

I know I'm the topic of many conversations of people who are itching to run to my Dad with "See! I told you so!"

Even relatives have gossiped so much about what they think is going on, that it has poisoned relationships with other relatives-- who would rather take sides than know the truth.

The latest lies circulating are that I’ve initiated a law suit, have put all of his assets in my name, and have ruined or blocked other people's relationships with him. “They said they stopped coming around because of you.”

Anyone who knows him or me, knows I don't have that kind of power.

Hundreds and hundreds of days, he and I were alone at home, and there was a ring neither from the phone nor doorbell.

There were so many times when he wanted company, or wanted to go out. Where were these people who were so desperate to be near him?

It's not unusual, though, for people who've had agendas, or what they thought was control, or a favored position to blame others for what they have failed to do.

It's never surprising when people accuse you of that of which they have been guilty. Those who were attentive to him know who they are--and they weren't looking for points--but I've taken note of every one. The truth is, each time they attended to him, it refreshed me.

I KNOW where my Dad would have been if I hadn't accepted the challenge--unhappy and raising sand in the best nursing home his insurance could afford. He wouldn't have liked it--and it would have been yet ANOTHER thing for people to gossip about. "Ain't it a shame what she did to her father?"

Still, there are people who have been relentlessly in his ear encouraging him not to trust me. Is it disappointing? Yes, now that I know who's been doing the talking and sabotaging, it is.

Is it a deterrent? Nope. I'm still on the job, but this time, on my fourth caregiving rodeo, I think I'm a bit smarter, more aware, less trusting, and not the least bit apprehensive or ashamed about the concept of self-care.

Do I have days when I want to vent, or take up drinking? Yes. This is obviously one of them.

There are many things that should send me racing to the nearest exit, but he needs help. Fortunately, I've got great help, now. I learned to ask for it.

There are nice people who have my back—who keep me encouraged. There are those who keep me connected to what I love--so I've treasured opportunities to go and sing on occasion. There are those who understand, and have been caregivers themselves-- and I thank God for them.

It's funny what people assume, though.

The way I have been confronted while out of the house on an errand, one would think that my dad was left bound and gagged a closet with a few soda crackers, tap water, and a straw.

I'm always baffled by the way people ask, "Who's with your dad?" as if I'm not supposed to leave my post, or see the light of day, except to get the mail and newspaper.

There were those who considered themselves qualified to “talk to me” on his behalf based on one-sided conversations, misinformation, and gossip. They really didn’t want to hear what I had to say. “Not At All” can’t say a darned thing to “Every Day”.

I'm always amused by people who want to school others in matters about which they have no knowledge or experience because they're never around long enough to gain any. I figure if you're sincerely worried about someone, perhaps you should put your money where your mouth is--or operate your functioning hands and feet where the work is.

I have been accused of everything from stealing money and jewelry, hoarding food in the basement freezer, padding the grocery bill, not feeding him in a timely manner, not feeding him at all, stashing valuables in my bedroom closet, leaving and coming in at ungodly hours, blocking phone numbers, deleting messages, to creating astronomical utility bills. Someone even told him that I “might” be inviting men into the house to visit me while he is asleep. They encouraged him to check the basement--even though he was a fall risk.

Perhaps they should have been on hand to help him get back up the stairs.

Someone else actually told him that he should sit with me when I'm ordering groceries to make sure I'm staying within his budget, as if I'm dishonest and need supervision. All I could think of was Sophia's face when she told Miss Celie, "You told Harpo to beat me."
Some people really don't know that their two cents only makes things worse for a caregiver. I guess that's their plan, though--to make things tough for you, but why?

I have been a live-in caregiver since June of 2015. Anyone who doesn't know that, but gossips about how "alone" and "neglected" he has been, has obviously not visited him. Now, what on Earth could they possibly say about their deep love for, and devotion to him? Absolutely nothing, you say?

That's right.

It became necessary for someone to permanently live with him after he was released from rehab following a serious cooking accident.

Just as he'd done in late 2005, when he finally addressed his cancer diagnosis, he asked me to be his caregiver, and I consented.

"I know you" he said. "I don't want no strangers in my house. You can stay there."

All of the nursing home brochures were promptly refolded, and it was decided that I would permanently, relocate to Maryland from DC.

But, alas, there remain people who are in denial about his fall, 1^st, 2^nd, and 3^rd degree burns, prostate cancer, lymphoma, vision and spinal issues, peripheral artery disease, diabetes, hospital and rehab stays, and would rather think that I just showed up one day and burst my lazy, freeloading behind into his home unannounced, and began to squat, clean up, and redecorate because I was destitute, and didn’t have a place to live. They don't think he even needs help. To them, he and his home "look fine".

Gee whiz.

I wonder why and how it got that way?

Was I reluctant to be his caregiver a fourth time? Yes. Caregiving is NOT easy. I learned that elderly people can become miserable, depressed, and experience a decline in health in nursing homes, particularly if the decision to enter one was not their choice. Every therapist and doctor shared that seniors tend to fare very well in their own, familiar environments.

My Dad is now a nonagenarian. Each time I agreed to be his caregiver, his prognosis was not good, and yet, he is still alive and kicking.

The aging person is dealing with his or her own mortality, and lack of independence, and there you are with your able-bodied self, easily handling the things that they now find difficult or impossible.

The aging person wants to remain in a space that they can no longer maintain—but it MUST be maintained, otherwise, their living conditions would look and smell like an episode of “Hoarders”.

Caregivers wear multiple hats that some people either fail to, or don't want to see.

As a caregiver, contrary to what some people think, the ailing person may be sitting all day long, but the caregiver most certainly is not. You are a multi-tasking troubleshooter. You are the cook, maid, nurse, seamstress, accountant, organizer, transportation coordinator, personal assistant, plumber, repairman, laundress, monitor, guide, gopher, time keeper, secretary, extra eyes, nose, ears and hands. It’s like having a newborn, only the newborn is a full-grown adult who's hopped up on medications that adjust their mood and mobility. You, the caregiver, by virtue of simply being there become the target of frustration, and have to remind yourself not to take seriously any filter-less speech. Sometimes the person you're caring for can be particularly unkind, impatient, unreasonable and even abusive. Your compassion and understanding kick in and you learn to deal with it. What you DON’T have to abide are selfish, spoiled, messy, chronically absent people always on the outside looking in, who don’t have a clue.

Do I care what people think? No. Well...maybe a bit more than I should. Do I detest liars, and people who do things for show, or who want to pretend they're doing more than they actually are? Yes. Definitely.

Am I fully aware of the desperation, confusion, depression, anger, and loneliness that illness and aging brings; that cause a person to be ungrateful, critical, unappreciative and in denial to the degree that he or she sows seeds of discord among people, just to have company or remain the center of attention? Most definitely.

I had to laugh at the person who told me how "good" my Dad sounded during their 2 minute phone call. The second he hung up, he had a coughing spell. That persistent coughing was brought on by a bout of congestive heart failure. THAT doesn't sound "good" at all, and can keep a body awake at night.

Oh. Before I forget... Every caregiver knows how tired he or she looks. You don't have to remind them, especially if you have no intention to relieve them so they can take the nap or break you think they need.

I hear that I’m mean and unfriendly these days. Someone actually called me a bully! I’ve never been referred to that way in my life, but if that means you don’t get to disrespect, disregard, or harass me as I advocate for my Dad, and you don't get to take advantage of him (like you perhaps used to), then I guess I am a bully. Call me Pit Bully.

I despise busybodies, gossips, and those who take advantage of vulnerable people. Sue me---or come and scrub a toilet, empty the trash, pick up a prescription, cook a meal, or fix a bed. That might make me friendlier.

Have I had to check anyone in the last 12 years? Yep. I know. It shocked me, too—and I still have my Jesus card. A couple of good things caregiving has done, is give me thicker skin, and erase my fear of confrontation.

It’s true. Some people just have to be told to mind their own business, or roll up their sleeves, and help.

Some people now understand that they can actually be of assistance by DOING rather than flapping their gums. They realize if they really want to know what's going on, firsthand knowledge is better.

There is no magical woodland fairy. The breakfasts, lunches and dinners prepared, the dishes washed, the laundry, yard work, and grooming done were not courtesy of Jeanie Nelson, Endora, Tinkerbell, Samantha nor Tabitha Stevens.

No one sees or hears what a caregiver experiences on a daily basis. If you're a caregiver, perhaps you've tolerated interference. Perhaps you've been motivated by mercy, and never wanted to make waves with people. Sometimes, however, you have to get your surf on. YOU are on the job. YOU know. Sometimes people are just going to have to be mad with you for doing what you know is in the best interest of your loved one.

No. People can't just pop in or call whenever they want. There are schedules and routines. There are restrictions and requirements. An aging and ailing person's home is not a hotel or a dumping ground. Disregard cannot be tolerated. Sometimes a caregiver has to put his or her foot down upon the foot of someone who thinks they don't have to be respectful or helpful.

I can't say it enough. Anyone who thinks they're THAT special, or who loves the ailing or aged person THAT much, should be the FIRST to volunteer to do whatever they can to HELP--consistently--and without expectation of reward.

I'm still his caregiver in spite of it all. It's about him. He needs help.

Yes. I am extremely tired-- mostly of people running their mouths--but it's just a distraction. Yeah. I have social media stalkers who call him and tell him what I've posted. (I can’t wait to learn the identity of the “hit dog” who’ll phone and read this post to him…lol).

The ones who call and interrogate him are THE worst. I think if you have a problem with the manner in which someone is doing a thing, that’s your perfect opportunity to pitch in and help. If you think someone needs a heart-healthy breakfast at 6:45 AM as opposed to 8:30, 9:30, or 10:30 AM, guess what you should do? Find a restaurant with a heart-healthy menu, buy a meal and bring it, pick him up and take him out, or cook one yourself.

Before you listen to gossip, spread it, or embellish it, STOP. Consider if it is accurate or not. Your words can do irreparable damage. Besides, talk is cheap.

Want to impress a caregiver? Ask them if there’s anything you can do to help—and mean it. Even if they say “Pray” just do it. If they say, “Yeah. Could you bring some toilet paper?” don’t ask if they need it right away, and definitely don’t ask if it’s for them, or the aging person. Aging people have to wipe their behinds, too.

If there is a caregiver looking after a loved one of yours, and you have done little or nothing to help, other than speculate, whisper, scrutinize, make excuses, repeat gossip, and stir up trouble, you should stop. Just find some duct tape and wrap your entire mouth. You should be ashamed of yourself.

If you have uttered the words "got it made", "piece of cake" or "chilling" in regards to a caregiver, slap yourself hard—preferably with a bag of quarters. You have either been living under a rock, are extremely self- absorbed, or have clearly lost your mind.

Please, please, please don't undermine a caregiver. Don't cause friction in a situation where friction could be life threatening.

Stress is a killer. Don't be the purveyor of it. Nosiness, meddling, ignorance, unauthorized changes, uninformed actions, unwise decisions, and unsolicited input DO NOT HELP.

Getting information from the wrong people and acting on it, no matter how good your intentions are, can be deadly.
Sure, this is America and you are entitled to your opinion, but TRUTH and facts are much better premises from which to speak.
If you aren't going to help in ways that count, don't hurt.

If you don’t know what you’re talking about, SHUT UP--and, apparently, there's nothing like progress and good news to shut up a busybody.