CAREGIVER DIARIES: QUESTIONS

Dad came home for a day.

I wondered Friday afternoon, as he was being taken from the specially equipped vehicle, "Where is the legion of people who would be helping me care for him?" 

I had imagined a happy band of people clad in gleaming white garments. There would be a doctor, nurse, PT, OT, CNA, chef, chaplain, masseuse, psychologist, and even a rep from Merry Maids. They would all quickly pour out of a large vehicle, like circus clowns, armed with their tools and supplies, and I would happily show them where they would all sleep. 

It was not to be.

Once Dad was wheeled into his room, the driver left. There Dad was, clad in his coat, hat, and pajama pants. He was looking around sleepily, and finally realizing he was in his own room. 

If not for two family friends who happened by, he wouldn't have been transferred to the hospital bed that had been delivered and assembled the night before. There was no transfer board; no bands to use; no hydraulic lift, just the upper body strength of two men.

One friend took Dad's suitcase to the laundry room for me, so that I could wash the clothes inside. 

Each of them asked if there was anything I needed before they left. They brought back Glucerna shakes, straws, and bananas. I couldn't think of anything else I needed from a store. What I needed most was skilled, medical help. 

Things are different now. very different. 

Dad is an amputee.

Most caregivers may feel as if they should get an honorary medical degree, based on their experience alone. Caregivers learn, and do what they have to, but it is a harrowing feeling when you're tasked to do what you are neither trained nor qualified to do.

I kept thinking to myself, "Dad's home." 

It was like bringing home a new baby, only the baby was 150 lbs., and could talk. 

I thought about all of the things that were done all day, by multiple people, when he was in hospitals and skilled nursing facilities. People were taking shifts. They had equipment. 

They were doubling and even tripling up to get things done. 

Once again, after almost 6 months, it was just the two of us again. 

"Where is everybody?" I thought.

I laughed, and was proud of myself as I wielded that big hammer Dad kept in the garage, and broke down the bed frame of the bed my parents had shared for years. 

In anticipation of Dad coming home, there were things to do. 

Moving the mattress and box spring to the basement was even funnier. I could almost hear Ross Gellar yelling, "Pivot! PIVOT!"

All the while though, and for a long time, I was keenly aware that I was alone. 

I was kind of proud of myself, though, for just plugging away and getting it done. I reminded myself, however, that I was no longer the 17-and-a-half year old who moved into this house in 1978; who could take two stairs at a time, and do cartwheels in the backyard. 

I had to pace myself.

I didn't sleep much the night that Dad came home. I left my room downstairs, and slept in the bedroom next to his, but I kept waking up to check on him. Someone suggested I buy a baby monitor. 

Every time I went to check on him, he was sleeping peacefully, but the urine in his foley bag looked abnormal. 

The nurse who did eventually come, had checked him thoroughly, but she, too had left, after telling me she'd see me in a couple of days. 

I logged on to Facebook. My high school friend Donna was awake, too, and sent me a Facebook message to let me know she was available to talk if I needed to. I needed to, and she kept me company on the phone until about 3 AM. 

I woke up again at 6:30.

Dad was awake, but too weak to sip water through a straw. I fancy myself an encouraging person, but none of my soft-spoken prodding and pleading was working. I popped in and out on him, and finally moved the high stool from the kitchen to his room, just sit with him. My back hurt. 

The oatmeal, water, banana, and Glucerna were just sitting there. I resorted to putting water on a teaspoon and putting it to his lips so he could sip. 

I was happy when I noticed him swallow. I looked at his Foley catheter bag several times. I'd seen that cloudy, orange sight before. 

At around 10 AM, I got myself together. I heard the nurse's voice in my head, "You have to be your father's blessing", Fatmata told me.

“There are times when you have to make decisions, and not care what other people think. You are here with him. You know what you see". 

I saw a man who should be getting professional care. 

"911 is always an option" has been a motto of mine for a long time. I heard my phone ding. It was my cousin Frannie. She was crying. She told me how she'd been awakened by a dream. Her words were confirmation to me. 

I dialed 911. 

The paramedics arrived quickly, were kind, compassionate. and decisive. They told me that the nearest hospital was "closed". 

"We're taking him to Southern Maryland".

I followed the ambulance so closely, I have no idea what roads we took to get there. When Dad got to the ER, my stress disappeared. When I saw my daughter's face, my heart leaped. When I saw those IV bags, I knew Dad would be okay. 

Hydrate a person, and they'll have strength to do everything else. Fight infection, and a person can function. 

I knew he would be helped and more alert in no time. 

Kristi, one of the nurses in the E.R., brought me a large cup of ice water. It was nice that someone thought about, me, too. 

As I watched everyone who laid hands on Dad, I knew they believed there was something they could do. Their movements were fluid. They were determined. 

I leaned back in the chair and relaxed. 

I have no patience for naysayers and quitters when it comes to seniors and children. When it comes senior citizens, they need advocates and cheerleaders; people who are aggressive and positive; people who don't just throw their hands up, but when they do, they grab whatever they know will work, and turn a situation around. 

Seniors need people who believe they are valuable, indispensable, and capable of long life--provided they are given the help that will promote it. They need cool-headed, knowledgeable, confident, reassuring, able-bodied people, who aren't indifferent, and whose strength doesn't peter out at the same time theirs does. 

Families need advocates too--not people who make them feel they are on their own; not professionals in name or title only. Families need people who have ready answers and solutions; not people who leave them bewildered and overwhelmed.

Years of being a caregiver have taught me many things. One is that America's health care system is broken in ways that are not irreparable. I know excellence exists because I've seen it. 

I have so many questions:

Why are people discharged from hospitals and skilled nursing facilities before they are well?

 

Why are there so many differing opinions about how, when, and whether to treat and cure a thing?

 

Why, when there is a known condition, are patients sent home to be cared for by amateurs, loving though they may be? 

Why doesn't every community have a state-of-the- art hospital, staffed by competent medical professionals? 

How can funds be found for casinos, monuments, stadiums, and museums, but not hospitals? 

Why aren't substantial scholarships given to high school students who seriously seek to become medical professionals?

 

Why aren't high school students, who live in communities where hospitals exist, given incentives to pursue careers in health care? 

Why don't we pay those who deal with the ailing and elderly, a wage that demonstrates that we value what they do? 

Why is a skilled nursing facility EVER understaffed? 

Why do some people in skilled nursing facilities seem to be happy to hear the letters DNR? 

Why do we treat family caregivers like slaves and indentured servants?

 

Why don't we think that family caregivers need personal resources, and respite? 

Why do family members have to camp out daily in the rooms of their loved ones, in order to make sure they are being cared for properly by people who are being paid to do so?

 

Why, even when your loved one is in a skilled nursing facility, do caregivers feel as if they have another full-time job in visiting every day?

 

Although I am a fan of handwriting, WHY is information not being stored in computer files, so that it can be easily shared from one doctor, specialist, or facility to another when new referrals or appointments are made?

 

Why doesn't every hospital have a wing that includes a skilled nursing facility and rehabilitation center, so that when patients are discharged from their hospital rooms, they can be easily transported within the building. or complex? 

Why, if the tools are available, are resources withheld from patients? 

Why is doping patients the go-to method for understaffed facilities? 

What is being conveyed and taught to physical therapists, that CNA's need to know? 

Why are substandard skilled nursing facilities allowed to continue to operate? 

Why is the place ANYWHERE where food is prepared, ever filthy and filled with clutter? 

Why is the food in some skilled nursing facilities and hospitals so abysmal?

Why are people who don't want to work at all, working at skilled nursing facilities? 

Why aren't patient's wounds being treated when, and as they should be? 

Why are people showered so infrequently? 

Why is there no full time physician, podiatrist, psychologist, etc. on staff at every skilled nursing facility? 

Why is the weekend crew ever less skilled than the nurses and CNA's who work Monday through Friday? 

Why aren't people turned in their beds so that pressure sores won't occur? 

Why, all over the country, are elderly people sitting crooked, and sleeping for hours in wheelchairs when their legs should be elevated? 

WHY does the doctor assigned to a nursing facility only visit once a week? 

WHY don't doctors make house calls any more? 

WHY don't primary care physicians make rounds any more? 

Why do people, who don't like people, insist on working with people? 

Why don't people answer when patients push those buttons they are instructed to push?

 

Why are incompetent people hired--on ANY job? 

Why are some facilities top notch (shout-out to Inova) and others suck? 

Why does a veteran EVER have to do anything except show up at ANY hospital, ANYWHERE and be treated immediately and thoroughly? 

Why is money and profit the bottom line when dealing with the health and well-being of human beings? 

WHY is there so much red tape? 

Why are people so quick to say there's nothing they can do? 

Why is everyone so freaking litigious? 

Why are people afraid of doing what's right and prudent? 

Why are family members left feeling it's all on them? 

WHERE IS THE CARE IN HEALTH CARE?

I felt better when I left the hospital yesterday. Dad is getting the care he needs in the place where he needs to be. 

It was bittersweet that he only spent a day at home. He smiled a lot, through his sleepiness, at the thought of being home, but he needed to be in a hospital. 

His nurse, Felix was kind and thorough. "I look at him. He could be my father, my papa, and I should care for him as if he were my own; as if he was in my own family. A patient deserves compassion. That is what I believe. That is how I see it." 

That's how everyone should see it.

I slept well last night…finally.