The big news today was the passing of former British Prime Minister Margaret Thatcher. A polarizing political figure, my father was definitely never a fan of hers. However, my father ended up having something in common with her when her daughter revealed in 2008 that Thatcher suffered from dementia. A powerful woman who was known for her sharp and keen intellect, her memory was destroyed by disease over the last several years of her life. It’s a cruel twist of fate for sure, regardless of how you feel about her political career.
Dementia does not discriminate between rich and poor. Political allies and world leaders Margaret Thatcher and Ronald Reagan battled dementia at the end of their lives. While it’s true that the economic burden of the disease is lifted for the rich and famous, it doesn’t take away the fact that all of the money and power in the world can’t cure dementia.
Alzheimer’s and dementia awareness advocates know the horrors of this disease and the damage it does to families. High-profile cases bring greater awareness, not that I ever want another person diagnosed with this dreaded disease. But in our society, the rich and famous do have power to highlight the various injustices of the world, from disease to poverty to racism. Maybe other world leaders will take note and reconsider better research funding for Alzheimer’s and related dementias.
I read this USA Today article about how family caregivers of dementia patients are having a negative impact on the workforce. It is very true and yet another consequence of Alzheimer’s, one that is often overlooked. According to the article, 1 in 7 Americans have been or are currently caregivers for family members. Almost 70 percent of those people had to modify their work schedule in some way. This is a big loss of productivity for companies, if you want to look at it from a cold, hard statistical perspective.
Of course, as any caregiver knows, caregiving goes beyond just the physical tasks. Caregivers often become depressed, anxious and suffer from exhaustion. This can lead to accidents on the job or poor working relations with co-workers.
While I was not a direct caregiver to my dad, I was for my mom for the last half of 2012. My mom didn’t have dementia, she had cancer, but her need for a family caregiver was just as necessary. And I did the only thing I felt like I could do in that situation, which was quit my job. It was not a decision I made lightly, but my mom’s recovery depended upon having a family advocate by her side for several months. I’m an only child, and Dad passed the year before.
Right now, I’m back home but I’m still only working part-time. I’m hesitant to apply for full-time work again because I fear my mom may need me again. Financially, part-time income will not be sustainable in the long-term.
There are no easy answers, but caregivers and their ill loved ones need better community support. While there are some family members who want to be full-time caregivers, I think many caregivers benefit from keeping to as normal as a routine as possible. Caregivers shouldn’t have to choose between providing loving care for their loved ones and being able to support themselves and their families.
When we think of Alzheimer’s, most of think in terms of the impact on family. We think about family members being caregivers. But what about the friends of those with Alzheimer’s? Can simple human companionship still be relevant in the Alzheimer’s world?
I read this interesting and touching piece in the New York Times this week, about a group of women who have organized visits to a member of their circle of friends who has early-onset Alzheimer’s. These ladies gather on a regular basis for outings and chatting and noticed a difference in Sunny, who became unable to organize events for the group and had difficulty communicating. They talked to her family and when they found out the grim diagnosis, they did what good friends do: offered support.
So now the ladies arrange short, stress-free visits centered around themes their afflicted friend can still relate to. For now, these visits are happy and uplifting. The friends know that one day, these visits may not be possible any more, but they are focused on improving Sunny’s quality of life in the present. Her family is grateful for the break from caregiving and for the emotional boost it gives her.
Of course, not everyone has a circle of amazing friends like this, but they are telling their story in hopes of inspiring others. It’s not just family members that are impacted by an Alzheimer’s diagnosis. Everyone in that person’s life feels the pain yet can make a difference.
Hopefully, we can count on good friends like Sunny has, if we are faced with a dementia diagnosis.
ABC did a segment about a program called the Virtual Dementia Tour. Of course, we can never truly understand what each individual with Alzheimer’s experiences, but the simulation attempts to address some of the visual and auditory issues commonly experienced by Alzheimer’s patients. Subjects are fitted with goggles that impair their vision and headphones that play sounds often described by Alzheimer’s sufferers.
During the segment, the reporter and a man whose mother has Alzheimer’s undergo the experiment. Both struggle mightily with trying to complete the simplest of tasks. The eerie part was how much the man resembled his own mother in the confusion and disorientation he was exhibiting.
The unique experience is supposed to give the participant a better understanding and more empathy when they interact with people with Alzheimer’s. I think it is a valuable tool and is valuable to all dementia caregivers, whether they are professional or family caregivers.
Unfortunately, for our loved ones with dementia, they are trapped in this distorted world all of the time.
Today, in addition to the presidential inauguration and the federal Martin Luther King Jr. holiday, is designated as a day of service. In the spirit of MLK, everyone is encouraged to go out into their communities and help those in need.
Participating in events like this can be difficult if you are a full-time family caregiver. Certainly when you are caring for someone with dementia, they cannot be left alone for even a minute. And while those in the early stages of Alzheimer’s might be comfortable attending a day of service event, others might feel overwhelmed. Financially, things may be difficult as well, so financial donations may be out of the question.
My feeling is that as caregivers, we are providing a day of service EVERY day. So don’t feel guilty if you can’t actively participate today.
There are volunteer opportunities with the major dementia organizations. There are many more volunteer opportunities on a local level. Do what you can. Promote the needs of the Alzheimer’s and dementia communities as best as you can.
The most important thing is to have a voice for those who can no longer express themselves.
I wish I had known that patient navigators existed when my father began his journey into the world of hospitals and nursing homes. I think it would have been worth the fee to have someone who had the knowledge and the experience in handling hospitals, nursing homes and billing issues.
With my mom, I felt I had better control over the situation. The hospital’s discharge planner gave me literature on the skilled nursing options in the area, and encouraged me to visit each of them before choosing one. I did and picked the facility with the best rehab services, because that was Mom’s most pressing need at the moment, her need to learn how to walk again. While the facility I chose did come with its own host of issues (that are pretty common in these places, unfortunately), the rehab was excellent and Mom left the facility fully walking on her own.
But with Dad, it seemed like his healthcare decisions were made by strangers. It didn’t help that often he was far from home when these decisions had to be made. Often, Mom and I felt like it was easier to go along with whatever the hospital recommended, because we were not familiar with the city Dad was in and the care options back at home were not sufficient for his needs. But it was when Dad first entered the nursing home world that we seemed the most helpless. I received a call just before Christmas 2010 with Mom telling me that Dad had been moved to Roswell. I assumed she meant to a hospital there because he was sick again, but no, it was an assisted living facility with a dementia wing.
I don’t know the details but Mom swears they moved Dad from the temporary rehab center he was in without her permission. I’ve asked people in hospital administration and they claim that is impossible, that payment and paperwork would have to be conducted up front. I believe this is probably the case, but see how a patient navigator could have been of great use to my mom in this situation?
She would not have been as overwhelmed and the patient navigator could have clearly explained what our options were. This is still just a small industry so I’m sure these services are not available in all areas but it is good to keep in mind if you are a caregiver facing major medical decisions regarding your loved one.
The Alzheimer’s Association Advocacy Forum will host its 25th national conference this year in Washington, D.C. from April 22-24. Check out this timeline of Alzheimer’s advocacy over the last quarter of a century. So many people have come together and broadened awareness of this terrible disease over the last 25 years. Certainly I know most advocates would hope we would be further along with treatment options or even, daresay, a cure, but awareness has grown greatly. Unfortunately, as Alzheimer’s cases have grown in numbers, the U.S. and the world have had to take notice and take action.
I hope to get to attend this year. For those on a budget, registration fees are being waived in honor of the 25th anniversary. You can find out more about the event and the agenda details on the registration page.
Sometimes, caregivers and family members can feel so alone, so isolated in their family’s struggle with Alzheimer’s. Meeting others who share similar experiences can be a moving, yet rewarding experience.
I can’t believe that I have been blogging for The Memories Project for one whole year now. I stuck to my personal goal of a blog post each day for one year, and despite the many challenges of this year, I was successful! Certainly not all the posts are award-worthy, but just the act of writing every day was quite beneficial for me. It allowed me to express some of my grief, and also kept me disciplined as a writer.
I’ve learned a great deal about Alzheimer’s and dementia over the past year. I’ve read many articles about medical studies and new treatments which offer some hope. I’ve also read many heartbreaking personal stories, from caregivers and family members who have had Alzheimer’s touch their lives. There are so many brave souls out there, who behind closed doors, deal with the demons that dementia can unleash. For many, their struggles go on silently, with no outside help.
The last photo of Dad and I together, July 2011.
One of my reasons for beginning The Memories Project was to showcase both the horrific and the tender moments that Alzheimer’s can create. I wanted to be a voice for others who were too overwhelmed with caring for a loved one with dementia at the moment, by sharing my own story.
The biggest reward of doing the blog has been all of the wonderful fellow bloggers I have met online. I have smiled and shed tears after reading the posts from Alzheimer’s family caregivers. While every experience is unique, there are some common issues that many of us deal with.
Now that I have spent a year telling my father’s story through my memories of him, this year, I want to turn my spotlight on to others who are dealing with Alzheimer’s in their families. So The Memories Project will continue, as I turn my attention to Alzheimer’s advocacy.
Thanks to the loyal core of readers who have joined my on this blogging journey over the past year. I so appreciate your kind comments and support.
When you lose a family member, well-meaning people usually say that things will get easier as time goes on.
But I don’t think that’s entirely true for everyone. Certainly, time marches on. But how one reacts to a death of a loved one, how they process their grief, well, that’s really a very individual process. I’m sure there are plenty of statistics and surveys out there that say generally speaking, people’s grief lessens after x amount of time. I think most of us know that when it gets personal, stats go out the window.
Mom and Dad in Ruidoso.
I’ve been thinking a lot about Dad lately, and that is understandable. The one year anniversary of his death was December 20th. Then it was the holidays. Certainly I have not been sitting curled up in a ball crying my eyes out with grief, but the pain still ripples through my heart. The guilt over what I would have, should have done differently still is something I’m working through.
Mom also remains grief-stricken, so I have to deal with that as well. On New Year’s Eve, she found a copy of the message she wrote in the 40th anniversary card she gave to Dad, the one she had cremated with him. While everyone else was ringing in the new year, Mom was grieving.
Tonight, she broke down again, letting me know she tells Dad every day that she loves him. Her message is always the same. She misses Dad dearly, but the way he was before Alzheimer’s. She could not wish him back the way he became with dementia.
So for some people, grieving the loss of a loved one does become easier. For others, it may change shape and form, but it is still a pain buried deep within the heart.
I found this article about the steps a dementia care center took to reduce the amount of middle of the night wandering by their dementia patients very interesting. The solution was simple and not nearly as expensive as medication. They simply offered the wandering residents snacks (a mix of naughty and healthy food) and the midnight snacks really seemed to curb their wandering tendencies.
I’ve written many times before about how Dad would wander at the nursing home. He was in a secure dementia care wing, so he couldn’t get outside, but he could still fall, which was the concern of the nursing home referred to in the article above.
When Dad wandered, sometimes he would have to be lured back to his room by a treat. One time it was a lollipop. Another time it was a piece of chocolate. The small bit of sweets seemed to calm Dad’s wandering spirit, at least for that night.
As the article mentions, the staff provided safe snacks for their diabetic dementia patients as well. I fully support care centers such as these that get creative in trying to accommodate their dementia residents. Offering snacks and the cleanup involved creates a bit more work than just handing out pills, but there are some centers that actually care about quality of life, versus just trying to make patients into “trouble free” zombies.
We need to encourage more of these proactive care centers in our communities.