Hopes – Life with a Chromosome 18 Condition

Families share their hopes for the future of life with a chromosome 18 condition.

That Doesn’t Look Like Me

A short documentary written and directed by Jeffrey Vincent Parise. One December afternoon a group of artists walk into a local nursing home and paint portraits it’s residents. During which the filmmaker asks the elders for advice on life, love and art. Three weeks later there is a group show displaying the finished portraits and proceeds of the sales are donated to raise money for Alzheimer’s Disease.

Ask Jai – When you want to scream at the world

February 2011

Dear Jai:

What did you do when you wanted to break down or scream at the world, but knew it would only distress your husband?

We found out recently that my husband has inoperable lung cancer and we have an appointment to see the oncologist soon. At this point we don’t know how bad it is, but there seems to be little hope.

Thanks,

Barbara

Dear Barbara,

First, let me assure you that fear is a normal and healthy response to hearing that dreaded phrase, “You have cancer” for either you or a loved one. One can be strong and dedicated to fighting this terrible disease and yet still be terrified. How you deal with powerful emotions, like fear, during this time of incredible stress will be its own trial. So, it’s important to find positive strategies that work for you.

For me, sometimes I was able to talk to my husband about what was worrying me, but sometimes, like you, I didn’t want to upset him. So, I would call, email, or text a close friend to talk to about what was going on that was bothering me. I learned how to text, so I could get instant support when I was in a public [...] continue the story

Ask Jai – Advice for Caregivers

October 2011

Dear Jai:

My wife has pancreatic cancer. Her visitors are coming less and less. What can I do?

Kevin

Kevin,

First, it’s time to rally the troops and give your wife’s friends and family members a pep talk about the important role they play in her life. Battling a life-threatening illness, enduring pain from cancer and its treatments, and facing the threat of dying might make people want close friends and family nearby to make them feel safe, loved, and not alone. Your friends need to know how much you and your wife need them to be a part of her daily life at this time. People may not realize the positive impact of their attention and energy, even if all they do is simply sit with the cancer patient watching television for an hour. Your wife benefits from their company, so make sure to communicate your and your wife’s needs to the loving group of people who surround you. Give them feedback on what is helpful and not helpful to your wife as she goes through different stages of cancer treatment. Open communication will be helpful to all involved.

Please also be sensitive to how your wife’s cancer [...] continue the story