After the One You Have Been Caring for Dies, Life Changes Dramatically 

The care of a loved one with a debilitating condition often falls to their mother, but fathers, siblings or spouses also may take on that role. Even if there is additional help available, the responsibility of assuring good care will usually be taken on with love by one person. Often, especially in the case of those with rare diseases, the need for care will last for many years.

My oldest daughter’s rare disease was such that she needed extensive care at times over the course of many years, but she also had long stretches of being able to be independent. However, the disease was progressive, so for the final 5 years of her life, she required care on a 24/7 basis.

My major focus during that time was her care. Unlike some with rare conditions, she had normal intelligence, so she was keenly aware of all of the abilities she was losing. It was a very difficult process for her and for those of us who loved her, even though she had the very best medical care as well as spiritual care. When she died, we were all relieved that she no longer suffered intense pain, but we also knew that we would miss her terribly.

The days following her death were busy ones, receiving phone calls, making arrangements for her funeral, clearing out the many medical appliances she had been using, and answering all of the lovely messages that were sent to us. And then… the reality had a chance to really hit. I looked at my husband one day, almost in disbelief, and declared, “We lost our daughter and I lost my job of caring for her.”

I had anticipated the fact that her condition would take her life, but I had never thought of what my life would be like when I was no longer taking care of her. It was shocking! Since I have stayed involved with others in the rare disease community, I have seen others face the same challenges.

We, in essence, lost ourselves while all of our focus had been on caring for a loved one.

If you have lost a loved one remember that no one can tell you how to grieve. While we all feel pain, the way we handle that is unique to ourselves.

Bearing in mind, that is now time to take care of yourself, you need to rest. For some that might mean reading enjoyable books, going on a vacation, watching funny movies or simply sleeping.  That works initially, but you can’t stay in that place indefinitely.

Although you will always grieve your loss, you will also need to find out who you are and what you need to do next.

In the beginning, your pain will be intense, as your feelings are raw, but with time the severity lessens. Yet, don’t be surprised when something triggers a flood of tears, even years later. That’s a normal response to loss.

Some caregivers have a career to resume or other family members needing their attention, but if you don’t, realize that there are other people in your life who want to help you navigate your new course.

We all have different abilities and talents. You may need to try a number of different endeavors before you make a decision as to where you belong at this point in your life.  Some of us stay involved with our rare disease family, but if you need to back off, that’s understandable. No one will ever fault you if that is the course you choose after you have devoted so much of your time to caregiving.

Finally, try prayer. Prayer won’t bring your loved one back, but it can help you to accept the fact that you can’t change anything that has already happened. Asking God for guidance is what has helped me to find peace and acceptance even though I will always miss my daughter.


Denise Crompton

Denise Crompton

 Denise Crompton and her husband, Bob, raised four children, the oldest of whom, Kelley, had the rare disease of Mucolipidosis 3. The many years that they spent caring for Kelley prompted Denise to write two books. Kelley’s Journey: Facing a Rare Disease with Courage chronicles their own daughter’s experiences. Diagnosis: Rare Disease includes some of the experiences of 12 more families, and was written to help raise awareness of all that is involved in living with rare conditions. All of Denise’s royalties go toward rare disease research. The Cromptons live in New Hampshire, where they spend their retirement years enjoying their many grandchildren, while still reaching out to help families with rare diseases.

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