A Caregiver's Story

For several months, Janet and her husband, Jack, managed to hide the signs that a devastating illness was overtaking their family. Jack had Alzheimer's disease.

Like many people in the early stages of this disease - and other dementias - Jack was very good at covering up. When family and friends visited, his long-term memory, which held out the longest, helped him make conversation that seemed normal. And when he talked about what he'd been doing yesterday, nobody knew that what he said was not even close to the truth - nobody, that is, except his wife, who, loyal and proud, never corrected him.

So when the day finally came that Janet could no longer manage her husband's care and had to place Jack in a long term care home, some friends and family were shocked. And skeptical. They wanted to be supportive, but frankly, they questioned Janet's decision....and it showed. Already consumed with guilt, Janet felt terribly hurt and lonely. Many family members - male, female, spouses, children - can relate to Janet and her experience. Their relatives don't mean to hurt them this way. However, few people have any concept about how physically and emotionally exhausting, and eventually impossible, it can be to care at home for someone who has a dementia. It takes living with the ill person on a daily basis to truly understand.

Just how do you deal with the sometimes crushing burden of friends and family who don't believe you've done the right thing in placing your loved one in a nursing home?

• Clear the decks for action. You know you did the right thing. Regrets, guilt, sadness - it's natural to feel these things. But you must keep it in perspective or the disbelievers in your life will undo you. So set aside self-blame and sentimentality, stop defending yourself, resist letting your emotions turn you against those in a position to help (family, friends and staff), and resolve to put first things first: your health and your ability to provide guilt-free, loving care and support to the resident.
• Communicate the facts. Rather than suffer in hurt silence, choose to bring about change by communicating with disbelieving family members and friends. Talk frankly about the "vibes" you're picking up, and describe in detail what life was like for you and your spouse or parent before the nursing home. Recommend reading material. Ask the nurse to speak on your behalf. Give the disbeliever a chance (and time) to understand; education is often a great healer.
• Show compassion. True - compassion more rightly belongs to you, but sometimes you must give before you can receive. Show disbelievers that you understand their reluctance to accept the way things are. It's tough to come to terms with a beloved relative or friend in a new situation. You can express this better than anybody!
• Ask for the support you need. Sometimes that's all it takes. "I really need you right now; this is terribly hard for me, and I need to know I have your support." Give the gift of showing people they are needed.

If relatives and friends continue to be unsupportive, they may just need more time. Be patient, have courage and know that you did the right thing.

If you, or someone you know is struggling with caregiving responsibilities or exploring care options, please reach out. There are many organizations that can help. Visit Where to Begin for more information.