Tag Archives: spirituality and dementia

You are More than a Caregiver

You are more than a caregiver!  Unfortunately, I had almost forgotten that motto. I haven’t written much in the past month. My house was accumulating dust. The garden sat untended. I was so overwhelmed with #caregiving responsibilities that I found myself neglecting important matters.

You are More than a Caregiver

Last year, when I moved my mom back into my house I wasn’t sure what to expect. Doctors had been discussing hospice and I was really afraid she would die among strangers. Bringing her home again felt like the right choice. I could not foresee how much my own life would change. I wanted last summer to be special. I wanted Mom to enjoy the sounds of birdsong on the porch and feel nourished by good home cooking. I didn’t plan further than that.

After we moved her, Mom got stronger for a while. Then she got weaker. I went from being able to manage her hygiene alone to needing another support person. Now we rely on a rotating group of helpers who pop in when I have to take her to the bathroom, or make sure I can get out to go to the bank. My household is like a carousel that keeps spinning. But in the process of managing everything for my mother, I’ve been quietly losing bits of myself.

How #Caregivers Lose Ground

In recent months I stopped finding time to do things that matter:

  • I wasn’t taking my walks. I used to go out almost every day for at least 20 minutes. The weather’s been nice, so there’s no excuse. I just let daily walks slip out of my routine.
  • My personal writing projects were shoved to the back burner. Pieces I’d been working on for months started to seem unimportant. Somehow they never got finished.
  • Mom now needs two people to lift her instead of one, so I can’t leave the house for more than two hours unless there are two aides on duty. My response: I stayed home more and lost time spent with friends and my sweetheart Mike.

I could blame my mom, but I let this happen without noticing the subtle ways things had changed. I’m getting a grip on the wheel again and I can see how even a modest lack of discipline can result in losing track of yourself. Somewhere along the way I stopped fighting the rising tide of responsibility.

Now I see that #caregivers must fight that tide to keep our lives from getting swept away in it. I have to schedule my walks on the calendar if I’m going to take them. In terms of family health, my walks are as important as my mother’s doctor’s appointments. I have to fight the temptation to do so much for others when the itch to write gets strong. Those unwritten pages haunt my dreams. Time with friends is essential, too. I need to take the initiative to make sure I get those social breaks.

Being a #caregiver is hard. We’re forced to make many sacrifices. Our silver lining is a rare, prolonged glimpse into the heart of human experience. If we pay attention, we can learn patience and humility — essential qualities in this crazy world! But we walk a tightrope every day. Without balance, we fail ourselves.

Words that Can Soothe or Scare: Hospice

I cringe when I hear certain words. Hospice is one of those terms I’ve tried to ignore throughout my mother’s illness. No matter what a person really means when they say it, all I hear is: “The End.”

Between the Pond and the Woods

A few years ago, a writer told me she had been doing research on hospice programs and she thought I should look into them for my mom. She’d never met my mom and, from my perspective, her comment seemed awfully premature — even downright thoughtless. At that point, my mom still had a lot of life left in her and I was determined to avoid thinking about “The End.” A few years later, I did my own research and realized that hospice isn’t always a morbid concept.

The Merriam Webster’s Dictionary offers this explanation from their Concise Encyclopedia: “Hospices provide a sympathetic environment in which prevention (not just control) of physical pain has top priority, along with patients’ emotional and spiritual needs.” That actually sounds like a good thing. I mean, we’re all struggling to meet our loved ones emotional and spiritual needs and minimize their pain, right?

The problem with the notion of hospice is that you have to be willing to admit that there will be an “end” before you can open yourself to whatever hospice offers. Like most people who’ve cared for someone with dementia, I have used hope and persistence to prop myself up for a long time. A hospice evaluation forces you to redefine your ideas about the future and that’s so hard to do. According to the National Hospice and Palliative Care Organization (NHPCO),  “A patient is eligible for hospice care if a physician determines that the patient has six months or less to live if the terminal illness runs its normal course.”

Dementia is such a weird disease, it’s hard to know what will happen in the next six weeks, much less six months. But there is a list of symptoms that are considered valid indicators that it’s time to consider hospice. For my Mom’s type of dementia, they are:

  • The person is unable to walk, bathe, and dress independently.
  • The person speaks few intelligible words.
  • The person is incontinent of bowel and bladder.
  • The person is steadily losing weight.
  • One or more of the following has occurred in the past year: 1)Aspiration pneumonia; 2) Kidney/urinary tract infection; 3)Recurring fever after antibiotics; 4) Pressure ulcers (bed sores)

The symptoms vary somewhat for each type of dementia, so you should do your own research according to the diagnosis. Despite any fear the word may conjure up, the hospice people I’ve spoken with seem to be extraordinarily caring. It’s their job to help minimize pain, and they try to do that for caregivers as well as patients.