December 13, 2013 · 10:41 am

The gift of guilt

I’ve been thinking a lot about guilt lately. I guess it started around Thanksgiving time. I reflected on this time last year, and how upset and frankly selfish I was, when I saw that Mom was sick again and knew I was going to be stuck in New Mexico performing Caregiving, Round 2 instead of being home with my family. I think I was just burnt out from the past several months, spending all summer and fall tending to Mom’s needs. By November of last year, I desperately wanted a return to normalcy, but I didn’t get it. It didn’t help that Mom felt lousy and was in a fighting mood.

gift

Fortunately for Mom, she has been able to wash all of these bad memories from her mind. Sometimes I resent her for not remembering all of the ugly things she said or did, but then I realize that it would do me good if I could also cleanse myself of these toxic thoughts. Mom has apologized and says often what an amazing daughter I am and how much she loves me, so our relationship is fine. It’s me that needs fixing now.

I also still harbor guilt about not coming to Mom’s aid sooner, the first time she was sick. I knew almost from the get-go that it was probably cancer. Mom was doing all of the right things, going to the doctors, but she lives in a small town and they were taking their sweet time in determining a diagnosis. In the meantime, I called Mom ever day, great, but she was getting sicker and weaker with every passing day. I had a new job that I wasn’t entirely thrilled with, so I didn’t even have work as an excuse. I just didn’t think I could handle another parent being sick so soon after Dad’s passing, which was just six months prior. So I waited three weeks before finally visiting her. I shudder to think if I had waited a week, even days longer.

If Mom’s cancer had been diagnosed sooner, her surgery may not have been as complex and she probably would have been treated in a hospital near her home versus being transferred over an hour away. I could have stayed at Mom’s condo for free instead of all of those nights in hotel rooms, so I wouldn’t be saddled with so much credit card debt now. Maybe she would have recovered quicker and I would not have had to quit my job (a year later and I still have not been able to find full-time employment again).

But then I think about the positives of the situation. First, if Mom had recovered quicker in the hospital, she may never have developed blood clots. It was an unfortunate complication, but if it hadn’t happened, I would not have taken seriously my 23 & Me genetic testing results that says I have a 60% higher risk of blood clots than the average person. Now if I land in the hospital for an extended amount of time, I will demand preventative measures to reduce my risk. This new found knowledge could potentially save my life! (As an aside, I think it is ridiculous that the FDA is trying to shut down 23 & Me’s genetic testing kits. All they offer is information, which they already indicate may not be 100% accurate. It is up to the user to decide how to proceed with that information.)

Another positive: If Mom had recovered quicker from her first surgery, her oncologist stated she would have started her on chemo. This would have been a disaster. When Mom was just starting to feel better and getting her strength back, she would have been knocked back down again. So far, she is doing well without the harsh followup treatment. (They found three polyps during her colonoscopy exam; results will be in on Monday.)

And yes, I’m still grappling with not being there for Dad during that last month of his life. I know all I can do is share my experiences and try to help others find the light as they make their way through the murky, treacherous swamp that caregivers must wade through.

How do you cope with caregiver’s guilt?

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December 8, 2013 · 8:11 pm

When My World Became All Things Alzheimer’s » Alzheimer’s Association | Blog

A moving blog post about being a family caregiver for someone with younger-onset Alzheimer’s disease. As this post suggests, we as caregivers must recognize the difficult journey ahead, but we should also try to build something positive while on that hard road.

jackfussellacrosstheland's avatarAcross the Land 2013

http://blog.alz.org/when-my-world-became-all-things-alzheimers/

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December 1, 2013 · 12:40 pm

Wandering man with Alzheimer’s mistaken for intruder and killed

In my local newspaper there was a sad story about a man with Alzheimer’s who wandered away in the middle of the night and walked a few miles from his home. He ended up at the front door of someone’s house at around 4 a.m., where he proceeded to ring the doorbell multiple times and turned the doorknob. The residents, who had just moved into the home recently, were understandably freaked out and did the right thing by calling 911. But then the male in the house did exactly the wrong thing. He stepped outside with a gun and when he saw the approaching figure, who was now in the yard, he told the person to stop. The person did not obey his orders and kept coming towards him. The resident shot the man in the yard and killed him.

crime tape

Once the resident discovered that the intruder was actually an elderly man with advanced Alzheimer’s, he felt great remorse. Of course, the family of the man with Alzheimer’s also have to live with the violent and senseless way their loved one died. The police have not charged the man with gun yet, saying while it was foolish to go outside, he did not break any laws.

It’s a sad case all around but one that I unfortunately can see happening more in the future. It is easy for those who have never cared for a loved one with Alzheimer’s to criticize the family for allowing him to escape into the cold night, but we know how difficult it is to keep watch over someone with dementia 24/7. And those with Alzheimer’s may not be cooperative and act odd, even violent, scaring a stranger into taking drastic measures in order to protect themselves. Anti-gun advocates will want to blame weapons in the home, but it still goes back to the person and how they react in a situation.

I think about the several times my dad wandered off and how he could have ended up like this gentleman. It’s a sobering lesson for all of us.

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November 26, 2013 · 11:50 am

Holiday Tips for Caregivers

These are great tips for us all to remember as we approach the holiday season. Also keep in mind that not everyone feels cheerful during this season. I know for myself, I approach this week with trepidation, because two years ago it was the beginning of the end for my father.

alzga's avatar Georgia Chapter Blog

thanksgiving

For most families, holidays are filled with opportunities for togetherness, sharing, laughter and memories. However, holidays can also be filled with stress, disappointment and sadness. This is especially true for individuals experiencing memory loss or other dementia symptoms and their caregivers. See below for a few tips that may help make the holiday season a little less stressful:

  • Give yourself permission to do only what you can reasonably manage. For example, instead of hosting 15 -20 people at your home, consider hosting just a few or consider having a potluck dinner and asking others to bring dishes to contribute. 
  • Let visiting friends/family know what your care giving situation is so that they can have realistic expectations about what kind of visit they will have and, if possible, how they can be helpful to you if you’re also trying to make holiday preparations.  
  • Try to maintain the person with memory…

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November 22, 2013 · 10:28 pm

Where was Dad when JFK was shot?

Unless you have been living under a rock this week, you’ve probably noticed the media coverage of the 50th anniversary of the assassination of President John F. Kennedy. Many people are taking to social media outlets to report where they were when they heard the sad and shocking news.

Source: patrioticcoloringpages.com

Source: patrioticcoloringpages.com

Since I wasn’t born yet, I have to wonder where my parents were on that fateful day. I’m pretty sure my mom was in the Navy but I’m sure she will let me know in our next phone conversation. I’ve written many times on this blog about how my Dad practically worshipped the Kennedy family. So I know he would have taken the news particularly hard. His naturalization record is dated 1965, so I’m guessing that in 1963 he was already in the Los Angeles area. Since it happened on a Friday afternoon, I’m guessing he would have been at work, but sadly, I don’t know where exactly he was when he heard the news.

And that’s not because Dad didn’t talk about it. I’m sure he told us on several occasions where exactly he was and how he felt, etc. But I never recorded the information. In fact, I probably ignored it, because when Dad started talking about the Kennedy family, he could go on for a long time. As a teenager, I never thought I would care about remembering such information. But of course, you grow up and wise up.

And now I’m left wondering where Dad was and how he felt on such a personally devastating day. Don’t be left like me, with gaping holes in your family history. Ask the questions now, while your loved ones are still alive and able to provide you with answers.

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November 17, 2013 · 7:16 pm

Reduce antipsychotic drug use in dementia patients by using another drug?

The rampant and dangerous use of antipsychotic drugs to treat dementia symptoms in elderly patients has been in the spotlight recently due to Johnson & Johnson being hit with a $2 billion fine for the false marketing of Risperdal. Could the answer to this disturbing trend be yet another medication?

pills
A drug called Pimavaserin is undergoing a trial right now to examine its safety in treating Alzheimer’s disease psychosis. Currently there is no medication on the market that specifically treats this condition, and we’ve seen the consequences of the off-label use of other antipsychotic drugs. I saw what Risperdal did to my father and readers of this blog were vocal about their concerns in properly medicating those with dementia.

One would hope that a medication can be created to ease the mental and emotional suffering of dementia patients without turning them into walking zombies.

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November 11, 2013 · 3:56 pm

Risperdal lawsuit exposes ugly truths about elderly care

This past week, Johnson & Johnson was fined over $2 billion for false marketing and providing kickbacks to doctors and medical care providers regarding the off-label use of the drug Risperdal. I’ve written before how much my father’s mental and physical health declined after being prescribed Risperdal in the nursing home. Omnicare, which supplied my father’s medications, also paid a major fine of $98 million.

I remember the indifferent attitude the doctor at the local hospital had when I questioned the use of Risperdal, which was already controversial even while my dad was still alive. The doctor just shrugged his shoulders and said they had to continue prescribing what the doctor from the nursing home had ordered. He asked me if I knew what it was for and I responded “to make patients like zombies so they’re easier for the nursing home staff to deal with” and the doctor agreed with a laugh. I did not find it funny at all.

Image credit: Schmidt & Clark, LLP

Image credit: Schmidt & Clark, LLP

Fines don’t bring back our loved ones who were harmed by this drug, but perhaps it will make pharmaceutical giants, doctors and nursing homes think twice before prescribing medications that can cause great harm to their patients. It’s difficult for caregivers to keep track of all of the medications being provided to a loved one when they are in a nursing home. I only discovered the extensive medication list for my dad when I examined the invoices that had been mailed to my mother from Omnicare. They wanted their money, over several thousand dollars worth racked up in less than a year, when in fact they were pushing a drug that was hazardous for elderly patients with dementia like my dad.

I’m not one for overzealous lawsuits and I’m not necessarily anti-corporate, but I’m glad that the whistleblowers exposed these companies for the malicious practices they were engaged in that impacted those with mental health issues who could not defend themselves. Better late than never when it comes to justice.

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November 5, 2013 · 10:23 am

The Question Behind the Question

Great post! It is important for those of us who are caregivers to learn that if we are not getting the answer we expect or want from our loved one, perhaps we are asking the wrong question (or the right question but the wrong way.)

Kay H. Bransford's avatarDealing with Dementia

mailpileFor two weeks, my Mom has been relentless on the topic of mail. Some days, she will call more than 5 times in an hour to discuss the topic. “Kay, I’m not getting any mail. Are you getting all of my mail now?” Nothing has changed, so I’m a little confused about her question.

I’ve been in her apartment when the mail is delivered. The remnants of the mail can be found on her bed, the entry hall table, next to her favorite chair, why does she not recognize that she is getting mail? Some days she gets as many as 9 pieces of mail. After a few days of her calls, I ask my Mom what was she expecting and not getting in the mail?

“I’m not getting any condolence notes, where are they going?” Ah-ha! I now understood the question she was really trying to ask, but was…

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October 30, 2013 · 3:53 pm

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.

hands

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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October 23, 2013 · 7:31 pm

“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.

remember

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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