I have stated before that I work as a speech-language pathologist in long-term care facilities, in the U.S. Quite a few of the persons I work with are referred to me by caregivers because they have problems with chewing and swallowing their food, either due to physical/motor problems or due to various cognitive issues (including reduced appetite/food intake or other behavioral or perceptual concerns).
I’ve long been a fan of singer-songwriter Patty Griffin. I feel she is one of the best songwriters alive. Her music is emotionally moving, alternately joyful and heartbreaking. Her latest album, “American Kid” was released this month. It is a tribute to her father who died a few years ago. Many of the songs are about loss and waiting for someone who is on the brink of life and death to pass. Griffin’s father was a proud Boston Irish Catholic and I could imagine him sharing some attributes with my own father. There’s even a song called “Irish Boy” on the album.
I was particularly struck by the particular memories that Griffin crafted into beautiful songs. “Don’t Let Me Die in Florida” was a phrase her father said after visiting the state to bury his brother. “Wild Old Dog” was inspired by a lengthy road trip Griffin took, where she saw a stray dog race across the highway, leaving her to ponder how God is like a wild old dog abandoned on the side of the road. A moment that most of us would only momentarily feel sadness about became a beautiful philosophical statement. And “That Kind of Lonely” which made me visualize a family gathered around a departing loved one, struck me with the line “Everyone in this room wanted to be somewhere else.” That is so true, whether it’s a dying relative or visiting a loved one in a nursing home.
It is understandably a moving and sometimes heartbreaking album but there are also moments of joy and throughout the album, a deep and everlasting love for her father. Not all of us have the talent of Patty Griffin, but it is inspiring me to remember the small moments as well as the big moments and continue to honor my father’s memory through writing.
Today I’m featuring a guest post by freelance writer Katie Elizabeth. She offers up helpful advice and positive lessons for Alzheimer’s caregivers. If you would like to write a guest post for The Memories Project, feel free to contact me at email@example.com.
When someone you love, such as a parent, is diagnosed with Alzheimer’s, it’s a scary and overwhelming experience. You have a lot of questions, you start preparing for the worst and you start to see Mom or Dad in an entirely different light. Suddenly, time seems exceptionally precious and you begin hoping for good days. That’s completely normal.
Unfortunately, what’s also normal is that you begin to forget to care about yourself. You start counting regrets, things you wish you would have done and early signs of the disease that seem so obvious now. While it’s natural to want to squeeze in as much quality time as possible or, sometimes, try to distance yourself, slow down. Don’t forget about how you fit in this equation.
Stop the Flagellation
There are no current, proven ways to stop Alzheimer’s from happening. While this is a simple fact, it’s often hard to process when you’re going through it. It’s often wise to seek counseling for yourself when a loved one is diagnosed to help you process the new information.
There will surely be days when you beat yourself up, such as remembering the eye roll you gave when Dad couldn’t remember something he did every day. Acknowledge it, move on and focus on the present. While that’s easier said than done, it’s a good goal to keep in mind. Noticing and accepting when you cling to the past is the only way to move forward.
Get Your Breaks
Whether you’re moving a parent in with you or finding the perfect care facility for them, it’s important to still carve out time just for you. No one can be a caretaker 24/7, and it’s certainly not a good idea to worry that much. It’s not selfish to create a relaxing time of the day just for you. Whether it’s shopping, a spa day or a good run, let go of the guilt and enjoy your special time.
By giving yourself breaks from caregiving, you’re ensuring that you’re at your best. Nobody wants an overworked, tired, cranky person caring for them. Your empathy, compassion and overall mood will improve with frequent breaks. It can be frustrating dealing with Alzheimer’s, even when the person is a loved one.
Is it Going to Happen to You?
Don’t feel bad if one of your immediate thoughts is “will this happen to me?” While scientists don’t know exactly what causes Alzheimer’s, there’s evidence that genetics is at least somewhat involved. Read up on the theories, but don’t drown in them. If you’re really concerned, consider adding supplements that show evidence of delaying dementia, such as a daily cup of green tea.
There’s no telling if Alzheimer’s will happen to someone close to you. However, worrying guarantees detrimental effects. Enjoy the time you have, focus on the good days and don’t lose yourself in the process.
When I was going through Dad’s old photos and documents again, I came across a recommendation letter that I wrote about in a previous post This was from Dad’s New Orleans years. I know very little about that time period of Dad’s life. At least the date on the letter, March 12, 1959 gives me some point of reference. Dad left Belfast quite young (I believe Aunt Maureen said Dad was 17) and worked a couple of years in England. Then he came to America in the early 1950s and lived in New York City (primarily Brooklyn I believe). By 1959 he was obviously living in New Orleans. By 1965, he was living at the Cecil Hotel in Los Angeles, according to his naturalization record.
I’ve been trying to piece together more on that New Orleans period. I happened to Google the man’s name on the recommendation letter, James A. Comiskey and discovered that he became a federal district court judge and was outspoken about civil rights. He died in 2005.
You never know what you might stumble upon when looking through old documents that seem to be mundane in nature. I highly recommend taking a second look at any photos or documents you have of loved ones because they may contain interesting bits of history just waiting to be discovered.
I recently attended the Alzheimer's Advocacy Forum in DC. I also heard our message that we need to ask for additional funding, but our goal is not to take from any other diseases that are funded by the National Institutes of Health (NIH).
In some regards, I disagree with this! I know my opinion will not be shared by many, if any!
With the profile of the two Tsarnaev brothers who are suspects in the Boston Marathon bombing evolving, it appears they were once grateful immigrants to America. Of course, they were children then. As they grew up, something apparently changed, especially for the elder brother. I’ve been thinking a lot about Dad and his own experience as a young man immigrating all by himself to America from Northern Ireland. He would have been about the same age as Dzhokhar Tsarnaev, the surviving suspect and the younger of the two brothers.
Like the Tsarnaev brothers, my father hailed from a war-torn region which had seen a lot of bloody conflict with the government that controlled the area. Dad spoke openly about his hatred for the ruling British system in Northern Ireland and his deep-seated belief that Northern Ireland Catholics should be free from British control. From time to time, he would make vague mentions of IRA membership and how he couldn’t return home to Belfast because of his past activity. I’ll never know for sure but I will guess this was just a bit of paranoia on his part. I do believe that if he had stayed in Belfast and never immigrated to the U.S., he likely would have become heavily involved in the IRA. Dad was a very proud Irishman and while not a violent person, I do believe he would have been willing to lay his life on the line for the cause.
The IRA is of course designated a terrorist organization, though Dad always defended the group whenever there was an IRA-sponsored bombing that caused casualties and made the world news report. The U.S. government has played a mediator role in negotiations, with a mixed record of success. Still, I can’t imagine Dad being involved in an attack against his adopted country to make some sort of statement for the IRA.
Certainly, radical Islam and the IRA are two very different beasts. America was a very different country when my father arrived in the early 1950′s, though still heavily broken down by ethnic groups where he lived in Brooklyn. In the light of the tragic Boston Marathon attack, I wish I could ask Dad more about his experiences as a young immigrant trying to find his way in a rapidly developing America. Did he have doubts and frustrations? Did he ever want to leave and return to Ireland?
America’s diversity in race, religion and culture has been a unique and overall successful experiment. But tragedies like the Boston Marathon also highlight the struggles the melting pot creates.
I’ve been contemplating grief, both mine and others lately. This was even before the tragic events at the Boston Marathon. I’ve watched documentaries covering the topics of the dying and the grieving process for those left behind. I watched “Griefwalker” featuring Stephen Jenkinson, a fascinating man who has dedicated part of his life to helping spiritually care for the dying. He makes some interesting points about how much humans fear death, even now with technological advances that removes much of the pain and suffering. We have convinced ourselves we fear the suffering, but it is really the unknown that death offers that strikes fear in our heart.
With Alzheimer’s and dementia patients, it’s so hard to know how much they still understand as they move towards their own dying process. I know my father was very afraid of dying, and especially of the thought of being placed in a coffin and buried. At least we were able to take that worry from him by having him cremated. But there is no way of knowing if those who are mentally compromised grasp the notion of death even in the moment it occurs. Perhaps it doesn’t matter at all to the dying, perhaps they are already on a different plane. Perhaps it is only those that are left behind who must grapple with the dying process.
I often think back to the morning my father died in the shower of the skilled nursing facility. Was there any recognition on his part that he was departing this life? Or was he trapped within the murky world of dementia until his last breath?
In ways I think we try too hard to make sense of the very natural processes of living and dying. We complicate matters by trying to rationalize every aspect of our world instead of allowing ourselves to feel both the pain and joy of living.
This quote from Stephen Jenksion is very simple yet profound: “Grief: It’s how you love all of those things in life that end.”