Tag Archives: Alzheimer’s

June 16, 2013 · 1:46 pm

Remembering what is important on Father’s Day

For those of us who have lost a father due to Alzheimer’s complications or who are watching their dad battle the disease right now, Father’s Day is a holiday with mixed emotions. But while the damage Alzheimer’s inflicts on families should never be forgotten, this is also a good day to reflect on the positives of your relationship with your dad. After all, you might not be feeling such pain or loss if you did not value him and love him deeply as a father to begin with. For some people being estranged from their father makes this holiday a very painful experience as well.

For me, the realization that I did deeply love my dad and didn’t have this distant, indifferent relationship I always imagined came after Dad began losing his mind. That is unfortunate, but I know right before he started to change, I was able to tell him how I know it was difficult dealing with Mom sometimes and to just try to hang in there. In fact, one of the last things I remember him saying to me on my last visit before he became ill was, “Your mother is driving me crazy!”

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I can still hear his hoarse, smoker’s voice making that half-joking, half-serious accusation. (My parents drove each other a little crazy, but they were devoted to one another.)

I could beat myself up today for not being there more often for my dad when he began the sad, slow slide into dementia. But at least I did get to hold his hand and tell him how much I loved him in the last couple of months of his life. And he was even aware and able to respond at one point: “I know you do.”

Actions of the past can’t be changed so as caregivers and family members we should stop being so hard on ourselves. Take today to remind yourself of the more pleasant times and let them bring joy to you even now as you mourn or suffer.

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June 5, 2013 · 8:17 pm

Dementia patients may try to mirror emotions

I read about an interesting study today that found those in the early stages of Alzheimer’s may try to mimic the emotions of those around them. The results suggest that it is in the best interest of caregivers and family members to try to maintain a calm and positive demeanor in the presence of those with dementia. I know, easier said than done, right! Still, it is interesting to wonder if the emotional disturbances and changes are a result of Alzheimer’s patients becoming more sensitive to the emotions of those around them. And anyone who has dealt with someone with Alzheimer’s knows that there is a great deal of anxiety, frustration and sadness, especially early on before proper coping mechanisms are developed. The condition has a name: emotional contagion.

A new study finds that dementia patients may mirror the emotions of those around them.

A new study finds that dementia patients may mirror the emotions of those around them.

I’m not sure I witnessed my dad mimic other’s behavior but I did notice his excessive attempts at “fitting in” or being part of a conversation or situation. He would try to make a relevant comment but I could tell by his eyes that he had no clue what Mom and I were discussing. As I’ve mentioned in previous posts, this stage of the disease is actually more heartbreaking to me than later on, when many patients “disappear” emotionally. Once Dad entered the nursing home, he was heavily medicated as most dementia patients are, which tends to turn one into a zombie. I struggled more with Dad trying to be upbeat and tell jokes even while he was clearly losing his mind than the sullen, withdrawn shell of a person he became in the nursing home.

Whether the person with dementia mirrors the emotions of others are not, it of course is best for everyone if a calm and stable atmosphere is maintained. That’s not to say you should beat yourself up if you show exasperation in front of your loved one with dementia. It happens, we’re human. But even while dementia strips away abilities and memories, it may magnify sensitivity in other areas that before we have ignored.

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May 8, 2013 · 4:41 pm

Caring for Yourself When Caring for Someone with Alzheimer’s

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 joyjohnston.writer@gmail.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.

Sometimes it seems impossible, but as caregivers we must find alone time.

Sometimes it seems impossible, but as caregivers we must find alone time.

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.

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April 17, 2013 · 12:22 pm

Living with grief

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.

Image credit: OrphanWisdom.com

Image credit: OrphanWisdom.com

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.”

Indeed.

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April 8, 2013 · 8:12 pm

Dementia does not discriminate

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.

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March 1, 2013 · 6:34 pm

Dementia’s toll on the workforce

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.

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February 2, 2013 · 10:28 am

When friends develop Alzheimer’s

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.

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January 29, 2013 · 7:19 pm

A dozen minutes in the world of Alzheimer’s

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.

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January 21, 2013 · 8:04 am

Day of service for dementia

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.

volunteer

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.

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January 16, 2013 · 7:36 pm

Patient navigators: Assisting caregivers through the medical maze

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.

maze

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.

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