Tag Archives: Alzheimer’s

Lessons learned from an Alzheimer’s caregiver

This insightful essay was posted on Maria Shriver’s website earlier this month. It is written by a neurologist who became a caregiver for his father when he was diagnosed with Alzheimer’s. The piece outlines 10 lessons that the author learned as he helped guide his father on this journey that no one wishes to take. Most of the points are well-known to those who are Alzheimer’s caregivers, but the simplest and most obvious advice can easily get buried as you struggle to deal with the emotional impact of the disease. We all know that we need to stay positive, live in the moment, keep our sense of humor and stop sweating the small stuff. While all of that is easier said than done, the author does a good job of giving examples of how this sage advice helped his dad live the best quality of life possible, despite the grim diagnosis.

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The last lesson is perhaps the most important of all but one many of us may struggle with the most: put away resentment and regret.

What lessons have you learned from being an Alzheimer’s caregiver that you think are the most important to share with others?

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“Tip of tongue” moments may be harmless

Good news for my mom and other seniors who have their fair share of “it’s on the tip of my tongue” moments. Apparently, the frustrating condition does not appear to be a symptom of dementia, according to the results of a recent study. The study involved over 700 subjects and while older people struggled more with these “tip of tongue” moments, the study concluded that there was no link between these temporary memory glitches and dementia.

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We all have those moments where we try our darndest to think of something but it remains just out our reach of memory. It’s frustrating, but as we get older, those moments sometimes are more frequent. My mom is an interesting case because she has always had this way of going off on several different tangents and forgetting what the original point was. It’s frustrating for her, and for me. :)

But Mom worries every time she struggles to remember something that she is exhibiting the early signs of dementia. After losing Dad and a sister to Alzheimer’s, it’s an understandable fear. As I march towards 40, early-onset Alzheimer’s is on my mind.

It’s a relief to know that these slips of memory are not something that we should worry about too much. We have enough to worry about as it is!

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ICU stays can trigger dementia

The Intensive Care Unit offers the best of care for critically ill patients. It is necessary in certain cases and the quality of care and technology available in the ICU has saved countless numbers of lives. But a recent study discovered that extended stays in the ICU can trigger dementia symptoms.

A new study suggests that staying in the ICU too long can trigger dementia symptoms.

Shorter ICU stays may help reduce the risk of dementia symptoms.

The Vanderbilt University study followed 800 patients after their ICU stay for a year. A whopping 75 percent exhibited signs of dementia during the study period. 1 in 3 exhibited symptoms of Alzheimer’s disease. The age of patients did not impact the display of symptoms. One example given in the article was a 46-year-old woman who spent three weeks in the ICU was still dealing with cognitive impairment issues 18 months later.

The study concluded that both serious illness and anesthesia drugs used during surgery could be dementia triggers.

My mother, who does not have dementia, had two surgeries last year that landed her in ICU. Her first surgery was of emergency nature and landed her for several days in the ICU. The second surgery was scheduled and Mom spent only the minimum amount of time in the ICU that is required post-surgery. Mom also had multiple complications (blood clots) with the first surgery. Her mental state was impaired for months after the first surgery but she was alert and talking just about an hour after the second surgery was completed. Her mental recovery from the second surgery was very quick.

When my dad had to have surgery to remove a kidney stone, he was in the middle stages of Alzheimer’s. His recovery was very slow and I do believe his cognitive functioning declined more rapidly than it had been before the surgery.

We can’t always avoid stays in the ICU, but advocates suggest asking for lighter sedation options when possible and trying to get patients engaged in mentally stimulating activities while they are recovering.

What has been you or your family member’s experience been like in the ICU?

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Antipsychotic medications on the decline in nursing homes

Data released by the Centers for Medicare & Medicaid Services found that antipsychotic drug use in nursing homes has declined 9.1 percent for the first quarter of 2013. In 2010, over 17 percent of nursing home patients had daily doses exceeding recommended levels. The CMS launched the National Partnership to Improve Dementia Care last year and hopes to reduce antipsychotic drug usage by 15 percent by the end of 2013.

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The overuse of antipsychotic drugs in nursing homes, especially to sedate dementia patients is an issue that strikes home for me. I watched my father suffer the consequences of being kept in a zombie state on these drugs. While I can’t know if my dad suffered while on these medications, my mother certainly did as she visited my father in this drugged state on a regular basis. My father only showed minimal aggression which probably could have been treated with behavorial therapy or milder drugs with less side effects. The main reason he was so heavily drugged was because like many dementia patients, he wandered.

I do feel for the understaffed, overworked and underpaid nursing home staff, who have no doubt found it easier to give patients a pill to keep them from becoming another problem to deal with. There is no easy solution, but filling helpless people full of drugs is not the answer.

Let’s hope the CMS initiative continues to be successful.

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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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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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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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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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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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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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