From A Caregivers Point Of View…
As promised, the second of two. ..
A heartwarming and informative personal story sent in response to the When Mother Gets Sick, Part I post:
I, too, have been in the same boat with my mom. When my dad passed away, I returned home with my husband-to-be, relocating from one coast to another, to oversee mom’s life in general and be her support system. She was still young at age 70 and quite capable of being on her own but some of the day-to-day things that my dad handled were suddenly daunting (do we have enough fire insurance or who will climb the ladder to change the smoke detector batteries?). We muddled through on our own. Six years later, the three of us decided to relocate to Arizona.
Mom was still very independent and able to live on her own. We secured two apartments in the same community, unpacked our things and prepared for life in our new city. We were so excited and hopeful. My intention was to find some nice male companionship for my mom as she was still very vibrant and full of life. Or so I thought…
Ten days after we arrived, my mom and I were having a conversation by phone and she was talking backward. Nothing made sense. She was having seizures for the first time in her life although I didn’t know it at the time. My husband and I took her to the ER and went through a battery of tests. We learned several days later that she had a brain tumor in the area of her brain that controls speech. Surgery was scheduled and performed and we sat on pins and needles waiting for the diagnosis. Another ten days of worry went by and we were hit with the news that mom had a year to live. I was told it was time to start radiation; five days/week for five weeks. I received that call from our neurosurgeon while I was alone in my home. I froze on the phone. Then hung up and literally screamed from the pit of my stomach. I wailed like a child although I was 38 years old. So this was it. No fun happy hours for mom; no dates for mom. Surgery, radiation, death. I had a year with her at best and no plan. Oh…and I had to deliver the diagnosis myself.
I was quickly thrust into the medical world of blood work, appointments, post-op instructions and the job of continuously explaining to my mom her diagnosis and that she was not dumb; the tumor was interfering with her ability to speak. No guidance for what to do, how to do it or what to expect. I had no idea that caregivers even existed. How do you know when mom is near the end of her life? How do you know when it’s time to call hospice? How do I honor my mom’s wishes and continue to let her be fiercely independent and live by herself? I was a clueless adult child who was about to become an orphan. It was time to pull up my boot straps and figure it out.
My mom always used to say “what would I do without you” and I really didn’t have an answer. What did everyone else do who didn’t have a daughter to devote every waking hour to her mother? Let’s face it, we can’t stop our lives, quit our jobs and sit ‘round the clock for possibly years at a time waiting for our parents to pass on. We are still in the land of the living and must function while preserving our quality of life and that of our parents’.
Two years after she passed away I decided to answer her question “what would I do without you”. I searched for a way to help others, fulfill my own heart’s needs and employ myself at the same time. I contacted an agency and asked that they give me a chance and hire me. I had hands’ on experience and my heart was in the right place. I was certain there were others out there who needed me and I was right. Over the past six years I have been fortunate to see both sides of the coin; as a caregiver employed by an agency and ultimately as a self-employed non-medical caregiver!
Both have advantages and disadvantages to the client in need of care.
A caregiving agency can provide 24-hour care with shift changes. They can provide backup if the caregiver is sick. On the other hand, I am one person with a family of my own and can only provide so many hours of care in a day. An agency is going to place more restrictions on the caregiver’s involvement, i.e., they do not allow caregivers to dispense medications or even tap a pill into mom’s hand.
As a self-employed caregiver, I can give all of myself and offer as much as I’m comfortable with.
When contacting an agency, ask questions not only of the agency and their policies but actually interview the caregivers yourself. If you don’t like their answers, move on to an agency that does fulfill your needs. Pretend this is your infant going to daycare and do the same kind of legwork needed to find the right people. Your parent is just as vulnerable as an infant.
When you meet, if your gut tells you to move on from that caregiver, do it. Don’t allow your own doubts about *being fair* to creep in by telling yourself that you’re not giving the caregiver a chance. If you have doubts, listen to your inner voice! You can’t go wrong.
My best recommendation for finding a private caregiver is to ask your parent’s friends for recommendations. Chances are, they have a caregiver or have had one. People never lose the business card of a good caregiver. Ask people you trust in your church, the local drug store that has a home health department, your trusted family doctor, your hairdresser and the neighbors. Chances are good that one of your friends has already dealt with this and can advise you. Really open your eyes and pay attention as you’re moving through your daily life. When you see a client and her caregiver in the grocery store or the hair salon, listen and really hear what’s going on. If that caregiver seems loving and gentle, ask her for a business card. Did she open the door for her client or did she leave her behind while she walked on ahead with her cell phone pressed to her ear? Observe.
When I meet a new client for the first time (as a caregiver for hire), I encourage as many of the adult children as possible to be present with a list of questions. Mom should have her own list of questions, too. Then we sit as a family and have a cup of coffee and just talk. I tell them about my own personal experience with my folks but keep out the expansive medical details. I also suggest they contact the families I work with or have worked with for personal references. They know the name of my husband and will eventually meet him. I have even broken the ice with an elderly couple who were resistant to caregiving by bringing pictures of my dogs. The client knows who I am before I even know who she is. And most importantly…mom is addressed to her face and talked to as part of the decision-making team. Even if she is unable to communicate well, I feel it is of the utmost importance to maintain respect toward her at all times. Never speak about her as if she’s not in the room. This is her life we’re trying to enhance as a team. And if she doesn’t like the caregiver, listen to her and pinpoint why. Not every relationship is a match made in heaven. Mom has her vibes too and she’s the one who will be spending her precious hours with that caregiver.
This is a scary time of life when mom is losing her independence, driving privileges, and her friends. It’s not easy for her to face it all and by telling mom “you have to do xyz” is only going to cause a battle and make her resistant to these changes.
I believe a good caregiver brings ideas to the table on the type of care she can provide. I’m always asked “what exactly to you do” and my reply is “I do everything a daughter would do”. Then I elaborate. My purpose in a private home is to keep my client independent and safe. I will then offer ideas on how to make that happen, i.e., removing throw rugs, extension cords, step stools, etc. I suggest that I can help with light housekeeping, i.e., change the bed, empty the dishwasher, do the laundry, cook, shop, schedule doctor/hair/nail appointments, get mom to her appointments on time, report to the family what the doctor has said, order prescriptions, etc.
My personal touch goes a long way and I eventually become part of the family until the end of the client’s life. I request the children participate in mom’s life not only for her sake but for mine as well. Interaction with family and friends helps offset depression in our seniors. It’s a team effort. And as the saying goes “there’s no I in team”!
I can also assist in the nursing home/assisted living/Alzheimer’s setting. Families cannot always be present during working hours to check on mom. But a caregiver can. I offer random checks in my business where the family knows I’m going to see mom but the facility does not know when I’ll be arriving or how long I’ll be staying. A good quality facility should welcome another pair of eyes. I also like the idea of a log book in the client’s room. It doesn’t have to be anything fancy; just a notebook to jot down observations or concerns.
Remember that as your mom’s child, your intention is powerful. Put out there what you want coming back. It may take time and you may go through a few caregivers, but the right one will come along.
Take time for you. Don’t punish yourself about keeping that Saturday afternoon all to yourself. You cannot be a good caregiver if you’re not taking care of yourself. Chances are good that mom is quite fulfilled from the conversations with her new caregiver and she’s thrilled that you’re taking the time to do something for yourself!
And remember…through the eyes of our parents, the most important role we play is their child not their caregiver. They’re still the parents and they’re still in charge. A hug does us all good!
About the author: Dianne Marcinizyn is a private caregiver in Scottsdale, Arizona. She is also a licensed and nationally certified massage therapist specializing in deep tissue and trigger point therapies. She lives with her husband and two senior rescued Labrador retrievers and is currently developing recipes for homemade dog food in her spare time. She can be reached at Gemini1961@aol.com.
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Deborah Hayes, CTA Life Coach
Empowering women to live a life of consequence, a life without regrets that is your own unique version of the life you love. About Deborah
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