When a Loved One Becomes Disabled

When my friend’s 25-year-old son suffered a head injury in a major car accident, death seemed like a certain outcome. Instead, he recovered. But medications caused him to gain 50 pounds and he suffered from cognitive delays that might, or might not, resolve.

He didn’t look or act at all like the athletic young man I had watched grow up. “I was prepared for his death,” said his mother. “I wasn’t prepared for this. My job is to figure out how to love him now.”

How to love him “now:” In that phrase, my friend captured the essence of our challenge when someone we love suffers a major change in physical or mental health status. The child or adult who is chronically ill or injured or the elder who is declining into dementia may bear little resemblance to the person pre-illness. The relationship between the person and people in the family, the friend network and the community may change drastically.

I’ve learned much about caregiving in the last 40 years — partly from taking care of my grandmother into her 90s, partly from talking to clients who have been in that role, and partly from supporting friends who were supporting loved ones. I’ve found that we all have much in common. Whether the change came about due to illness, accident, abuse, combat, or aging, the challenges for caregivers are much the same. Here are some thoughts about self-care while caring for someone else.

• Grieve in your own way, on your own timeline.
  Don’t put pressure on yourself to “get over it” on some artificial timeline. Everyone grieves in their own time and in their own way. The contrast between “before” and now may be overwhelming and sad. There needs to be room for owning and going through the feelings.

  The process identified by Kubler-Ross (denial, anger, bargaining, depression, acceptance) isn’t linear. Most people move among those processes in different orders or different days, often many times, until they can accept the loss of what could have been. The continued presence of a person who is but isn’t the person from “before” makes it all the more difficult.

  In the early 1960s, Simon Olshansky coined the term “chronic sorrow” to describe this ongoing sense of loss. It is a normal response to the repeated realization of the reality that the illness or disability will never go away. Each expected life milestone can trigger renewed grieving. Birthdays come and go. Peers marry, have children, get jobs, move up or at least on in the world while the injured or chronically ill person remains relatively static. Older people with dementia stop being the parent or grandparent everyone enjoyed. We don’t really get over it. We do learn to live with it.

• Find meaning.
  Chronic sorrow may be a constant undercurrent but it isn’t the whole story. As my friend so aptly put it, the focus is on how to love the person in the now. That means identifying what you love about the person and finding meaning in the relationship. Caregivers often say that they themselves grew and change in important ways through knowing and loving the person in their care. Some become effective advocates for the cause of their loved one’s losses. Some focus on the moment to moment of each day. There’s no “right” meaning except what is right for you.
• Adjust expectations.
  Comparisons to other people’s normal is a setup for disappointment. It’s more helpful to talk to professionals about what is reasonable to expect for your person on his or her particular timeline. Your loved one may never go to Harvard or explore the moon, but he or she will achieve things that matter. It’s something to celebrate when a person who has been terribly injured starts to take interest in life again or when someone who has been unintelligible gains some speech. I do think it’s fine to support an elderly person in poor health in her desire to eat two desserts. As my grandmother, age 90 at the time, said, “At my age, I’d rather have more ice cream than another year!”
• Adjust your home.
  One mother I talked to said that she wished she’d known sooner what equipment was available to make her paraplegic son’s life — and hers — easier. A lift for the tub let him have his bath in relative privacy. A tool for reaching and grabbing things he dropped let him be more independent.

  When my grandmother came to live with us, we found that grab bars positioned strategically around the house made it much safer for her to get around — which meant she was more willing to move. A commode next to her bed made dangerous trips to the bathroom unnecessary. Sometimes something as simple as a special spoon can make all the difference. Search the Internet and talk to an occupational therapist about what would be helpful.

• Accept help.
  Services vary by community. Talk to your doctor about how to access what’s available. My friend with the son with a head injury was able to access an excellent day program that he enjoyed. A state agency was able to provide respite workers one weekend a month to allow her and her husband to get a break. A weekly visit by a senior companion was a welcome change of pace for my grandmother — and some time off from being the focus of her attention for me.

  When family and friends offer to help, take them up on it. Let them be the kind of friend you would be if the situation were reversed. People who care about your family are often willing to run errands, visit now and then, or do some caregiving.

  Depending on cognitive ability, therapy for the injured person may help him or her accept losses and find strengths. Therapy for other family members provides support for managing conflicting emotions and for sorting through the myriad difficult decisions that often have to be made when supporting and loving someone whose life has taken an unexpected and difficult turn.

• Accept that loving “now” is an on-going process.
  When someone’s life isn’t going as we hoped and expected, we are regularly challenged to adjust to a new “now.” Disabled children grow even through their skills may not — or not enough. Adults who have become disabled remain dependent. Elders continue to decline. They get frustrated at times. So do we. The antidote is our love and commitment and the capacity to see the person before we see the disability.

Woman in a wheelchair photo available from Shutterstock