Tag Archives: caregivers

Jenni Inspired Me To Come Back

First of all, thank you to all of those folks who wrote me asking where I had gone and when I’d be back. It’s nice to know that you are interested in what I have to say about my experiences.

Secondly, I have a few reasons for taking this very long break from writing My Father Doesn’t Know Me Anymore. Most importantly, and the reason that most deeply affected me, is the fact that I felt a need to discuss certain issues that I did not feel safe discussing here. I censored myself for fear of upsetting anyone. And, I may or may not bring up those issues at a later date. I may disguise them as topics or I may relate my personal experiences with them. I don’t know how I will present them, but I will present them. For now, I’m just going to work on writing about those things that people have asked me to address.

I do owe you an update however. My father, JHP,JR, passed away Sept. 20, 2012. I’ll go into that long story in another posting. My hope is that I can have this blog up and running for the first anniversary of his death. I’d like to think he’d be proud of me for doing so, but he would probably be really ticked off that I stopped for so long.

As always, if you have any topics you want me to explore, please feel free to drop me a line.  I’m working with hindsight now and it’s amazing how similar the view.


Self Care: My Decompression Chambers

As I wade my way through JHP, JR’s new life, I have slowly begun to realize the importance of self-care. One of the ways I take care of myself is to have a variety of what I call decompression chambers where I can sort through my feelings, or just forget about them for a few moments, particularly after challenging visits with my father.  Being able to process these feelings while also learning how to fill one’s own cup are necessary skills for anyone. Let’s face it, unless there is somebody to call or talk to right away, caregivers are often on their own emotionally.

I’ve also learned that processing my reactions to what’s going on with JHP, JR can take time. The fear, the feelings of helplessness, not knowing what to do with these new feelings about our new relationship can be overwhelming. It’s important to find that balance between reaching out and reaching within. Not only must caregivers be careful about over-utilizing friends’ ears and shoulders, we must also strengthen our resolve to honor ourselves and our situations while taking good care of our bodies and minds.  Since I’m more than just a daughter, I’m also a mother and a friend, I have to find that balance. Dad is not the only person who counts on me to be strong and effective. In fact, it’s easy for me to forget that I, too, count on myself to take the necessary precautions. And I am fairly certain I’m not so unique as to be the only caregiver who does this.

One of my most effective tools for decompressing is walking outside. These days, one of my favorite decompression chambers is a local park that includes a small lake and lots of trees. Not only does it have a paved walk that wraps around the perimeter of the lake, there is also a nature trail that takes walkers through loads of mature trees and leads to a simple meditation labyrinth.

Whether I walk at the park or in my neighborhood, I always have my cheap little MP3 player in my pocket. This gives me the option of either listening to nature mixed with car sounds or listening to music. When I listen to music, I have a tendency to think of it as a soundtrack to the sites I see as I either try to forget about my emotions or work them out in my head. After a couple of miles, I usually pull out my camera and take pictures while I cool down. This simple act serves to literally shift my focus away from my fears and concerns about dad and force a different perspective, if even for just 20 minutes.

Then there’s drumming. I’ve been learning how to play the djembe for over three years. Besides attending Saturday morning classes sponsored by Drums Not Guns, I’ve also taken classes taught by Master Drummers from West Africa, and other talented musicians in the DFW area.

What I love about hand drumming is that my teachers use the rote method of instruction, meaning there’s no sheet music. These teachers use vocalizations to signify the different ways of hitting the drums to make the right sounds. Since I haven’t read music for many years, this works well for me. Then, there’s this one little aspect that makes drumming such a great tool for me. When I stop thinking about whether or not I sound stupid, if I focus on technique and allow myself to feel the rhythm I’m creating, then I get lost in it…if just for a few minutes.

Photo by Billy Keith Bucher

Finally, there is dance. Yes. I dance. I don’t dance in public, but I dance nearly every day. Whether I’m dancing with my kids around the house or working out, it puts me in a happy place that makes me smile, laugh, and sometimes I even sing. Mind you, I’m not much a dancer, but I’m not a horrible one either. Dancing serves as both exercise and a decompression chamber/mood lifter. Maybe one of these days I’ll set aside my self-consciousness and dance in front of other people like I did when I was younger. For now, it just helps me let go.

And I think that’s part of it all. Letting go helps. It’s easy to get stuck in that place where I think I have to do it all. I have to put myself into caring for others so that I can continue caring for dad, but that’s bogus. It’s okay to be self-serving too. Because ultimately, who do I, you, rely on the most to handle all of this emotional messiness? I have to rely on myself to get to the place to find the love and support both inside myself and outside myself. It’s a tricky gig that I’ll keep muddling my way through even after JHP, JR dies. For now, I think it’s best just to go easy on ourselves and appreciate/honor/respect not only what our loved ones are going through, but also what we as caregivers are going through.

What it comes down to is simple preventative self-care. De-stressing in healthy ways that really do brighten your day can make all the difference in your effectiveness, and it may prevent caregiver burn-out, or at least more frequent feelings of caregiver burn-out.

Back to journey,

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.