Stephen's story - being a caregiver

When you accept the challenge of being a caretaker for someone who has chronic vestibular issues you may think you know what you are getting into. Most likely your previous experience with this person has given you some idea of what caring for them will entail. Maybe you have a nurturing, altruistic nature. Clearly, this person is someone special to you.

Many people don’t realize that being a caretaker will have a profound impact on your time and energy, your emotional equilibrium, your relationships, and your lifestyle. It’s like getting married or having your first child. You simply could not have foreseen the challenges ahead because you’ve never had the experience.

Here are a few lessons I like to think I have learned (although I still struggle with them every single day!), which might provide some insight into the challenges you already face or the mission you have ahead of you.

How I became a caregiver

When I was 55 years old my father died, and my mother came to live with me and my wife in Houston, Texas. All of her life my mother has had problems with her balance and with attacks of vertigo. She has always called herself a “dizzy broad,” humor that she uses to lighten a serious situation. Often I’ll see her walking across the room and start to lose her balance, upon which she does a little Irish jig to catch herself before she continues slowly onward.

I thought being a caretaker would amount to such things as helping her make her bed so she would not have to bend over, putting her walker in and out of the car when we go to the store, putting her medications in her weekly pill boxes and checking to make sure she takes them. Doing those things on a daily basis is quite simple in comparison to grappling with the more mental/emotional challenges involved in being a caregiver.

No fault, no blame

It took me some time to understand that my mother’s vestibular problems are not some burden that came upon her, and as a result, upon me, because of something she did wrong. Regardless of how her condition came about, it is her condition and she has no choice but to live with it.

I do have a choice. I could choose to let my brothers or sisters take care of her. I could choose to help her find other support services to look after her special needs. But if I choose to accept her into my life and play the caregiver role I can no longer blame her for burdening me with an imposition into my lifestyle. I made that choice, not her, so I can no longer blame her with the frustrations with comes along with it. They are my frustrations. She has her own problems to deal with.

It’s her pain, not mine

She describes her symptoms to me repeatedly. It has taken me many holier-than-thou years to realize that a little empathy can free me as much as it can offer support to my mother. I am not responsible for causing the pain and fear she lives with. I am not required to actually feel it, and I am not responsible for healing it. That’s not my burden.

I learned a lot about this from years of working as a minister in my church. I remember sitting with members of the congregation and their families in the hospital, wishing I had wise words or unexpectedly brilliant actions that could relieve their stress. I would feel better if they felt better. If they didn’t get well or feel hopeful and happy, that would mean I wasn’t a good minister! I didn’t realize I was making their grief all about me.

The service I could provide was to be there with them, calm, caring, and consistently supportive through whatever ups and downs they would experience. Once I freed myself from the need to carry their pain or to heal it, I could sincerely say, “I am sure this must be difficult, but I know we can get through it together.”

Understanding

Can I ever truly “understand” a pain or condition that will never go away?

Earlier in my work as a minister, my mentor developed pancreatitis and experienced terrible pain as a result. As I sat with him I remember thinking that when I get sick there’s a part of me that knows I’ll be well in a few days, or at the outset a few weeks. I began to wonder, “What would it be like to have an actual pain or fear that will never go away, no matter what I think or do, but is only likely to get worse?” It must be terribly debilitating and depressing. I realized I would never know unless it happened to me someday.

About 15 years ago I ruptured a disc in my lower back. I remember once, while taking steroids for the pain, for an hour or so I experienced a slight attack of vertigo. I hope I never go through that again. Fear of that experience is what my mother lives with every moment of every day.

One of the most frustrating things for my mother is for people to say to her, “I understand” your condition. She shakes her head and tells you that you could not understand. Then she explains her pain and fear, gets a confused look on her face and says, “I guess I can’t explain it right.” I believe she is trying to tell me, “I desperately want you to understand,” while at the same time saying, “You can’t understand no matter what I say or do.” Both of those are true. She desperately wants understanding and tragically feels no one can understand. That, in itself, is a painful, repeating experience for her.

Saying, “I understand,” does not communicate understanding, but people say, “I understand,” to one another all the time, trying to reassure the other person that they “feel” their pain or concern.

I have found that it works better for me to acknowledge, “Yes, I may not be able to understand what you experience. It must be difficult. So what you and I can focus on is what we can do about this difficult situation.” Ironically, when I do that she feels more understood!

Why is she so irrational?

It is difficult to think rationally and make good decisions when you are in pain or afraid.

I remember when I broke the disc in my lower back the pain was so excruciating I could not focus on anything else. Pain was everything. All I could do was hope the pain would lessen in an hour or a day or with enough pain killers, although I had no good reason to believe it would change. Seeing ahead into a positive future without that pain was completely impossible. In those moments, pain was everything.

Once, when she was undergoing some tests at the office of her ENT, the doctor’s assistant put my mother in a position that caused her to have a vertigo attack. Neither the assistant nor I knew how to perform the Epley maneuver that would stop the dizziness. I was aware that, in that moment, it was unreasonable for me to expect her to “be positive.” All I could do was run out, get the medication she needed, bring it back to her, and wait with her while it took effect.

I believe this is what my mother experiences whenever she begins to lose her balance, when she has a bout of vertigo, or even begins to think about being dizzy. How can I expect her to be positive at that moment and to rationally and logically problem-solve her situation?

In such moments I may feel my own frustration building because I want the uncomfortable moment to be over. But in doing so I am making the situation about me, not about her, which adds more emotional pressure to an already difficult situation. I notice that my frustration is having an impact on her when I see a confused or scared look on her face. In the past, I would try to push harder, to make the point I felt she did not understand, but that would only increase the tension. While I still think my point is right, my frustration isn’t helping to clarify the point. At that moment I’ve learned to take a deep breath, step back, slow down and let her take whatever time she needs to talk through the fear. My job is to repeatedly outline the facts and the options until we arrive at a solution.

Risk Management

We are supremely aware that having severe balance problems poses a fall risk, so in our discussions we sometimes have to apply basic “risk management.”

When my mother moved into our house ten years ago she took over our second floor with three bedrooms and two bathrooms, smaller than her previous homes but a nice retreat where she could have her own space. One day, my wife watched her grasping the handrail as she struggled up the stairs with her little Maltese dog in her hands, praying that she would not lose her balance and tumble down the stairs. That was when we realized that we had to relocate her to the downstairs bedroom. She was initially resistant. We don’t normally impose our will when making decisions about her well-being, but the risk of an accident was just too great, so we insisted.

Two years ago my mother turned quickly in her to avoid tripping over her beloved dog, lost her balance, fell and broke her hip. We knew it would probably happen one day, and we’ve dealt with the related challenges as best as possible.

Mom’s bathroom as a sunken shower, which means there are two steps down into the shower area. It would be risky for her to climb in and out of that shower every day. Losing her balance and falling is the proverbial “accident waiting to happen.” We have another shower on the first floor, but she has to walk all the way through the house to get to it, which is inconvenient and sometimes challenging to her because we have several dogs.

When we are having these “risk-management” discussions I ask her, “On a scale of 1-10, what is the likelihood of the fall-event happening?” On some days she believes that likelihood is very small because she is feeling good. So the next question is, “On a scale of 1-10, what is the potential damage that might occur if a fall-event does happen?” Even if the likelihood of a fall seems small, it is obviously not worth the risk if the damage is high. Asking those questions gives her the chance to think it through, accept an uncomfortable situation, and choose to use the safer shower.

Slowly losing hearing

This may not be true for everyone who has vestibular problems, but my mother has been slowly losing her hearing for many years. Most people think they just need to talk louder, but that only causes more problems. Her hearing aids do boost sound, but damage in her inner ear makes it difficult for her brain to understand that sound to be any more than a bunch of noise.

In fact, I learned from her ENT that her brain often reinterprets what we say, so she literally believes we said something else. In the past I thought she just didn’t listen. Now I understand that it’s a hardware problem, like a short in her circuits. Actually, she can come up with some pretty funny interpretations, so we all get lots of laughs. But we can laugh because we know it’s not anyone’s fault. It’s not her fault for not listening. It’s not our fault for not being clearer. I have learned to speak slowly and clearly and look directly at her so she can read my lips.

It must be terribly frustrating to sit with a group of people who are talking and just hear noise. For some reason, in group settings where there is lots of noise, she will begin to feel dizzy. So we don’t go to parties or restaurants often because the noise is physically stressful. As a result, her world has shrunk.

It must also be terrifying to know that you are slowly losing hearing while at the same time slowly losing sight to macular degeneration. There is only so much medical science can do to fix these things. So we do as much as we can to create a safe, comfortable environment, and hopefully not add more stress to an already difficult situation.

I’m her translator

Because my mother doesn’t hear clearly I know I must accompany her whenever she has a doctor’s appointment to make sure she understands the doctor and the doctor understands her. One of my big jobs is to translate what doctors and nurses tell her. I’m always nervous when a medical technician walks off with her to perform an x-ray or CAT-scan, not knowing if they will remember my instructions about how to communicate. I explain to them, “Her hearing aids do amplify your words, but inner ear damage makes it difficult for her to understand your words, so you need to speak slowly, distinctly, looking right at her so she can understand.”

But medical professionals are busy and have their own habits for relating to patients. Some respond well, others do their own thing. So I make sure to translate for her, and make sure they get the most important information they need from her. On the drive to a doctor’s office our habit is to review the list of questions and issues we want to discuss, and she leaves it to me to make sure it all gets done.

It’s not just about me

In most of what I have written here it’s obvious I keep referring to my experience with my mother. But I learned it is important to constantly be aware that it is not just about me. The decision to have her live with us affects my wife, Myrrh, my business partner, and my brothers and sisters.

When Myrrh and I decided to buy our house we purchased a place with much more room than we needed because we expected at some point to be caretakers for one or more of our parents. Myrrh’s mother developed dementia, and because her challenges were more than we could manage she lived in a nearby full-time care facility where Myrrh could care for her. So instead of her own mother, my wife inherited her mother-in-law to come live with her! Sounds like the makings of a typical situation-comedy show.

How lucky am I to have a wife who will make that choice? I won’t go into the dramatic, challenging, and often entertaining mother, son, daughter-in-law dynamics, even though with her whacky sense of humor my mother thinks it would make a great article. Suffice it to say that I am always appreciative of the adjustments other people in my life have to make to support my mother.

While her circumstances may require us to adjust our lives for her, my mother doesn’t want everything to revolve around her. So we are very conscious to make sure everyone gets support.

Myrrh is a professional artist, a plein-air oil painter with a studio in our home. When she needs to focus we let everyone know to stay out of her way – you don’t want to inhibit the creative process. I need physical exercise to keep myself balanced, so we make sure I have time to play pick-up basketball games at the gym. Sometimes I will join Myrrh on a painting trip for about a week so that we can have time together, just the two of us. During this time one of my sisters will fly out to look after our mother. I keep all brothers and sisters informed and up to date on how she is doing so they can understand and do whatever they can to help.

Why do I do it?

I care for my mother because I care about her. I’m sure you have someone in your life who you feel this way about. The caregiver relationship is not always easy, but patience, empathy, and self-care can help you maintain your sanity and build a stronger bond.