Tag Archives: Home Health

An Open Letter to Caregivers

Dear Caregivers,

You aren’t paid very well. In fact, most of you probably aren’t even paid living wages. You are overworked and overlooked. Despite your low wages, despite the lack of recognition, you hold positions of power. You hold power over our loved ones much like teachers wield power over our children.

Our loved ones can no longer take care of themselves. Some don’t even know when they need to eat or bathe or get dressed. They may have forgotten the world outside their rooms. Many of them can no longer speak for themselves. Some may try to speak only to find they have no control over which words come out of their mouths.  Many of them don’t even remember what you did to them or for them an hour ago. This gives you awesome power.

Those of us who need your help with caring for our loved ones need to be able to trust you to use that power with honesty and compassion. It is important that you understand their vulnerabilities are not weaknesses. Their vulnerabilities are your opportunities to improve another person’s life. Please respect our loved ones, their homes and their property whether they live in old houses or special facilities. Please respect our loved ones’ lives. Please be reliable and trustworthy; help your charges enjoy their final days, months, or years with some sense of dignity.

Please treat our loved ones the way you want to be treated when it’s your time to rely on strangers for daily care. See the importance of your work. Your presence in their lives holds so much potential value. Please strive to realize that potential by giving them something to be happy about when all else seems lost.

The fact many of our loved ones are unable to recall a visit, a joke, a family member does not mean they are ineligible for the opportunity to create new memories. If you sit with them, hold a hand, tell a joke, kiss a forehead, or share a story from your life, you are giving them something of value: your time, your attention, you. Even if they don’t remember the encounters, you still leave a mark within them.

JHP, JR, his mother, father and friends celebrating his graduation from OCS.

These men and women had full lives before you met them. They had careers, families, tragedies, successes. They fought in wars, in courts, in protests to afford you the possibility to live the life of your dreams. The life of an 89-year-old patient reaches beyond what you have read in history books. What you learned about the Great Depression, they lived. What your teachers told you about rations during WWII, they experienced.  These men and women were teachers, mothers, fathers, ministers, architects, entrepreneurs, survivors, farmers, attorneys, engineers, Girl Scout leaders, Cub Scout leaders. The vast majority of their parents had to fight for the right to vote, own property, attend school. These men and women voted for presidents you’ve only seen in books.

JHP,JR. and friend at CCC. Golf was his second love. Mom was his first.

If we take the time to tell you our loved ones’ biographies, please listen to us. Stand in awe of their accomplishments, trials, survival. If we don’t tell you details about their human experiences, feel free to ask. Feel free to show interest in who they were and how they got where they are. Don’t ever assume these older adults were anything less than productive members of our society. The person in that wheelchair is as important as your father, your mother, and your grandparents.

Please keep in mind, their value as humans shouldn’t be judged by the number of visitors they have each week. Their value as humans shouldn’t be judged by what they know about the world as it is today. Their value as humans is in their history, what they’ve done for friends and family. Their value is that they are still here, existing rather than living because they have no other choice. They rely on caregivers to help them make it through another day, in a long history of days, with some semblance of dignity and happiness.

While so many people strive to “live in the moment” that is where our loved ones often stay, without choice. They exist in their perceptions of this very moment which may be 1944, or 1955, or 1984. This very moment might be their cage. This very moment may provide shelter from the states of their lives. Please help them feel as if they are living in their moments with dignity. Please give them reasons to feel safe, secure, and important, even if it’s just for that one, brief moment. Please take good care of them.

Yours in compassion,

Jerome’s Daughter


The Paid Caregiver Dilemma

So, you’re spent. You’re done. It’s gotten to the point where you are drowning in the needs of your loved one. You’ve tried to hold on to some sense of a balanced life and sanity while being the primary caregiver, but at some point your loved one’s needs and emotions become too much for you and you alone. At some point, you have to face the fact that your needs must also be met in order for you to keep up the hard work. This is when you realize it’s time to get outside help. What do you do? Who do you call?

The challenges faced during this new stage of care can come as a surprise. Eager for help, for some relief, you set off to find the perfect home health match. Then, you see the prices they charge, the rules they have, the limitations, and after listening to sales pitch after sales pitch, it’s becomes even more confusing. When the reality of the caregivers’ skill sets, demeanors, attitudes, and understanding of the disease become apparent, you might find yourself sorely disappointed. Even though you will easily pay $240+ per day for full-time care, the discrepancy between what you pay and the quality of care your loved one receives may begin to feel like a vast chasm full of contradiction and disappointed.

I am not telling you this in an attempt to sway you from your decision. I’m telling you as a warning, so you won’t go through what I went through with paid caregivers.

As you begin to look for an agency, here are a few things to keep in mind.

Ask for other family caregivers’ opinions about agencies.
If you attend an Alzheimer’s support group, ask around. If you know anybody in a similar situation, ask them about the agencies they used, liked, reported, etc. And remember, something they claim is wonderful about an agency might not seem so wonderful to you. Just hear the person out, then ask clarifying questions.

Check with your state’s Department of Aging and Disabilities or Health and Human Services Departments.
Your state may have a different name for the department that tracks home health agencies. Always check with these departments before signing a contract with a home health agency. Most states will list each agency’s “grade” and violations, if any. What may seem like a small violation to you now may later serve as proof that caregivers don’t properly track their daily activities with patients. This could become an issue later on.

Everybody you contact will probably tell you their agency is staffed with “Alzheimer’s Experts.”
Here’s the rub, Alzheimer’s is NOT an accurate term for all dementia patients’ diagnoses, it’s just one of the more recognizable terms associated with dementia diagnoses. Additionally, while caretakers absolutely must have a deep understanding of dementia, they must also be willing to become experts in your loved one’s situation. We used to tell caregivers, “I want you to have a PhD in JHP” (my father’s initials). If you find an agency with a good combination of knowledge, mixed with loads of compassion and integrity from the top down, hang on to it.

Finding a good home health agency for caregiver staffing is much like finding a childcare provider for your first child.
It’s a challenge to find the values, compassion and attitudes that you want in your loved one’s home. You have every right to be as picky as you were when you sought out a caregiver for your first child. You might know what you need/want in the beginning, but then you will go through the experience and you might begin to realize other things you and your loved one need/want. And dementia has its ebbs and flows, ups and downs that almost seem cyclical in nature. It’s good to plan ahead and find someone who can provide services when your loved one’s worst symptoms. Fine-tuning takes a while.

Managing caregivers can be one of the most infuriating and frustrating jobs you’ll ever have, but it doesn’t have to be.
You listened to so many higher-ups at so many agencies work their promotional magic that you became hopeful, oh so hopeful, that when you finally hired an agency they would have the best caregivers for your loved one. But, now it’s time for the experience. After awhile you may find yourself wondering if the company’s mouth piece told the caregivers all the rules/policies/promises they told you. Sometimes it won’t match up. Why? Because home health agencies (or nursing homes, etc) are only as good as their worst caregivers. And unless the agency does regular surprise, on-site visits to patients’ homes, they’ll never know for sure what is going on.

I highly recommend giving everybody in the agency, from the top down, the same information about your loved one’s symptoms, preferences, habits, likes, dislikes, etc. Put it in writing. List the rules and regulations of the home. You will basically be training new caregivers and checking in on them. Read their notes. Pay attention to the “feeling” in the room. Note how much attention each caregiver seems to need from you and your family. If and when a problem does arrive, utilize the home health agency’s specific protocol for handling complaints or other issues. Follow that protocol. Don’t take it all on yourself. Let the bosses do the work and hold those bosses to their promises. Keep the agency accountable for their employees. Otherwise, you will get exhausted. I promise.

And finally, make sure to have clear boundaries with caregivers. It’s easy to fall into feeling like they are part of your emotional support network. This leads to blurred lines in the professional relationship. Just be careful with this.

Most caregivers are paid just a little more than minimum wage.
This is part of the discrepancy between what you pay out weekly and the quality of care your loved one receives. Yes, the bill may translate to $10 per hour, but that full-time care adds up to $240 per day, $1,680 per week, approximately $7,200 per month and/or $87,600 per year. It’s very challenging to see the amount due on each monthly bill and not expect high quality care.

Sadly, in my experience, good in-home caregivers were few and far between, despite the enormous fees. The caregivers usually weren’t “trained,” but were tested over dementia materials they read upon being hired. The practical experience was usually lacking, although they all told us things like, “I worked for Mr. Peabody for 12 years and I treated him like he was family.” Yes….caregivers told me similar things many times. We’ll go over the problem with those kinds of statement on another day.

There was always something with the caregivers, and usually it went beyond to a lack of training or understanding of the manifestations of the diseases, and the lack of basic common courtesies normally extended to others. We had missing money which led to an “accounting system.” There were long distance phone calls on the land line that did not have long distance which led to a large note taped on the phone saying “Do NOT Use.” We had notebooks of information that very few caregivers read. We had caregivers who claimed to be “experts” that judged our father for typical dementia behaviors AND who worked on his feet even though he had an amputated toe. (FYI…ElderCare 101: ONLY podiatrists work on elderly people’s feet….period.) There were many more issues that arose during the course of the 2 years our father remained in his home, and while those listed may seem minor, when added up it was a whole new set of stressors.  Even though it was nice not to have to be at his house everyday, I lost sleep to worry about my father’s health and well-being.

The more they toot their professional horns, the more closely you might want to watch them.
This one tip comes from time after time of listening to “professionals” at various levels of management in home health care agencies talk about how wonderful they were and how highly trained/skill/perfect they were with “Alzheimer’s” patients. Those people who did this the most were usually the least capable. I got so tired of people telling me about all their experience/expertise that I began to tell them, in a not-so-friendly tone, “I really don’t care to hear a verbal CV. Just show me what you got. If you can show me that you are an expert, then I’ll believe you.”

Nearly across the board, the folks who tooted professional horns had little to show in terms of insight into my father’s diagnosis. Over time, I learned to see that behavior as a bright, Garrison-sized red flag and would nearly immediately write off that person as a potential caregiver for my father, and call the respective agency to find a more suitable match.

Unless you have nanny cams in every room, you will have to trust the caregivers’ notes and explanations.
Always read the caregivers’ notes. Check to make sure they are following the rules. Pay attention to the lists of foods prepared, the medications given, the number of baths per week. If a caregiver isn’t keeping notes, make sure to tell the agency.

The beauty of caregivers’ notes is that they do tell a story even when the caregiver isn’t leaving any. You may find complaints/excuses/or interpersonal issues in the caregivers’ notes. Also, make sure to check with the agency on their policy about caregivers’ notes. Does the agency leave them in the home or file them in the office after a week? Will they leave copies of the notes for you? Find out the answers to these questions and then do what you can to make sure you always have copies for yourself.

Also, most likely, you won’t be at your loved one’s side day and night. There may be times when your loved one may claim certain things are happening which may seem absurd to you. Read the notes. It’s hard to hear a loved one’s complaints, dismiss them as symptomatic of dementia, and then find out the claims were not true. The reverse of this can also happen. Notes, even minimal notes, can show information and attitudes. Some caregivers may tell on another caregiver in the notes, but not in person.

For instance, our father claimed one caregiver was abusive towards him. I honestly discounted my father’s claims because I was convinced he was being racist and sexist. Then, two other caregivers witnessed the young man verbally abusing my father. I became much more open to my father’s claims after that, and in hindsight there were indications in the caregivers’ notes that I just hadn’t noticed before.

This is also why it is so very important to make sure you trust the caregivers and the agency. You’ll have to determine for yourself what signs suggest someone will be a good fit for your loved one. It may take a bit of experience to find the formula that works for you. It will come.

Read your loved one’s demeanor, moods, and body language around each caregiver. It’s okay to be picky.
This will be reliant upon your loved one’s ability to communicate. Better to be safe than sorry. Better to err on the side of caution. Hopefully, you’re accustomed to your loved one’s emotional cues and can get a good feel for his or her sense of safety and security around the caregivers.

This is only a smattering of ideas and suggestions, warnings and lessons learned. It was such an interesting experience going through those days of dad living in his home with 24-hour care. There are many more items that I’m sure I’ll cover over time, as I recall situations and people. Go with your gut. And, in the meantime, please check my Links page for information on questions to ask home health agencies. Just be prepared, do your research, and listen to what other families have to say. It may save you a lot of time and energy.