I’ve never given much thought to the term “caregiver”. I never considered it a job or a label. I always thought of it as something you just did, after all aren’t all parents’ caregivers? That used to be how I thought, but’s it’s all very different now.
Fran and I would like to share with you some of what we’ve learned on our journey as caregivers for our daughter Melissa, as she launched a long and brutal battle against a terminal diagnosis of cancer. We were not prepared for what we were about to experience on many levels, nor were we aware of the toll that a prolonged illness and ultimately the passing of our daughter would have on us. There were many variables for us on this journey, as no doubt each situation and circumstance is different. One size does not fit all. With the benefit of hindsight, we hope to share with you what we’ve learned and what Melissa’s Wish intends to do, to assist those in need.
Melissa was diagnosed with a rare abdominal cancer at the age of 26, and given 6 months to live. As a vibrant young lady who loved and cherished life, I could never imagine having to sort all of that out at such a young age. Life is just beginning and now you’re told you have 6 months left to live?? Despite the horrific nature of her prognosis, Melissa embarked on what would be an amazing and inspiring journey for all who knew her and defied all the odds that she was presented with.
6 ½ years after her diagnosis, Melissa was in the final days of her life when in a moment of reflection, she asked her mom and I, that if we were to do anything in her name, could we please help the caregivers of those who are suffering. I was amazed at her observation and asked her why the caregivers? She went on to explain that she observed during her many stays in hospitals, chemotherapy sessions, office visits, and finally in hospice, that patients for the most part get the treatment they need. She witnessed firsthand the toll it took emotionally, physically and financially on the caregivers leaving them broken, beat up and forgotten.
Wise beyond her years, she never ceased to amaze us! At this point in her journey, just a few days before she left us, she was concerned not about herself but others, most whom she would never know!
After Melissa passed nothing seemed right nor felt right. Fran and I were broken in every sense of the word. We were struggling to pick up the pieces of our lives and put them back together, but nothing seemed to fit. What used to work, no longer did. What used to bring us joy was gone. What was important, no longer mattered.
We handled the grieving process very differently, which I now realize is normal, but this created great tension between us. Not to make light of the situation, all I kept hearing in my head was the old nursery rhyme;
Humpty Dumpty sat on a wall, Humpty Dumpty had a great fall. All the king's horses and all the king's men, Couldn't put Humpty together again.
Everyone’s situation and outcome is different. Fran and I share the following information and urge you to use what you can, and to seek help early when you find yourself struggling. This is not the result of forethought. It’s the result of many years of reflection filled with smiles and tears, as we all rode an emotional roller coaster that none of us wanted to be on, nor were in control of.
I offer you the following observations and reflections of the journey Fran and I experienced as caregivers. This will likely not cover every situation, but hopefully it will enlighten those that find themselves in an unwanted role, a role that is one of the most precious ones we could play for our loved ones.
There are a number of moments that Fran and I shared with Melissa that we treasure today and we would have missed had we not been present.
She met Uncle Herb who passed away when I was a child and he lived in California.
She met 7 Nancy’s in Fran’s family. Fran said there was only 3 and Melissa challenged her. Melissa was right.
On several occasions Melissa had a number of family members standing around her bed. She described each of them in detail. When I asked what happened with these visits she replied “I told them I’m not ready and I’ll let you know when I am.” They then left.
There were many more that MeIissa shared and I offer this not as religious statement, rather a spiritual one. Melissa told us that she found great comfort in knowing there were loved ones waiting for her. Apparently this is a fairly common experience, but everyone has their own beliefs.
If the prognosis is good, then focus on encouraging the patient to get strong, healthy and help them find the bright spot in each day to focus on.
If the prognosis is not good and your loved one is open to discussion, let them lead the conversation. What answers do they seek? If you can’t answer them, who can? Is bringing clergy in an option? Reminisce about the good old days and family. Bring in some of their favorite music, read a book to them. The goal is to make their journey as calm and peaceful as possible while maintaining their dignity.
Think outside the box. Acupuncture and Reiki brought great relief to Melissa and is now encouraged in many facilities. As a caregiver there is a very good possibility that you too would benefit from one of these modalities.
Fran and I have tremendous appreciation for those professionals that have dedicated their lives to helping those we love. This includes doctors, nurses, home health aides, hospice professionals, social workers, clergy as well as those practicing alternative solutions. We are forever grateful for all they did to help make Melissa’s journey as comfortable as it could be. They are truly special people, but they are not meant to be substitutes for family and loved ones.
I can’t think of any greater honor than sharing the gift of time with someone that is in need, vulnerable, or at the end of their journey. Helping to maintain their dignity when they can’t, and/or simply being that familiar smile at a time when that is all they need, is priceless. This precious gift is one of the most selfless acts we could offer our loved ones. If you view this time with a loved one, especially if it’s the end of their journey as a blessing, it will be!
In hindsight we can see that Melissa’s journey prepared her to set in motion Melissa’s Wish. We can also see that our journey as Melissa’s caregivers prepared us to implement, with much support and love from others, Melissa’s Wish. The wisdom of Melissa’s last Wish is now perfectly clear!
I’m proud to say we are building a great team at Melissa’s Wish of professionals who are dedicated and qualified to help us develop what we are calling the “resource pantry.”
In addition to providing financial support to qualified caregivers we will strive to provide various ingredients of critical information and services to aid in their journey as a caregiver.
A full list of the services and events planned will be forthcoming as we identify likeminded, qualified facilitators to help present these services.
I would like to thank you for your interest in Melissa’s Wish and if inclined, I ask you to share this unique concept with your family, friends and associates.
We need the help and support of the community to insure Melissa’s last Wish lives on in her name. To help us make that a reality we invite you to make a donation.