I’ve actually been dealing with another health crisis with Mom (she’s doing better for the moment) but wanted to note that today would have been my dad’s 83rd birthday.
This is the youngest photo of him that I have, and he wrote a lovely message on the back to his dear mother.
I love the serious pose, ready to conquer the world.
Easter makes me think of eggs, of course, and how my dad avoided them like the plague. He feared having a high cholesterol level. Recent studies have debunked many of the previous reported links between egg consumption and high cholesterol, but when I was growing up in the 1970s-1980s, it was a big health focus.
As I got a little bit older and a tiny bit wiser, I thought it was strange that my dad would worry so much about eating one measly egg but smoked a pack or more of cigarettes each day. Surely the coffin nails would kill him via lung cancer before he developed heart disease.
We were both wrong. Despite the decades of smoking and the decades of egg aversion, Alzheimer’s claimed my dad’s life.
It made me think about how often our fears are misguided. We worry about x, when it’s really y that’s getting ready to do harm.
Fear is a valuable self-preservation tool, but it can also hold us back from our potential.
With both dementia and cancer prevalent in my family, I do think about what I eat and other lifestyle choices probably more than the average person.
But I also know I could get hit by a bus on my way to work.
There’s a balance there somewhere, everything in moderation, as the saying goes.
At least I’m going to enjoy my eggs.
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Mom is depressed. I know this. She knows this. Admitted it to the doctor when he asked.
But she remains very resistant to the idea of talk therapy.
This, from the woman who can, and does, talk to everyone! She’s never met a stranger, and she’s collected the life stories from hundreds of strangers while riding the bus or waiting in line at the grocery store. Mom is not shy at all about discussing depressing personal subjects, like Dad’s Alzheimer’s or her own battle with cancer.
The woman who admits she is lonely and just wants someone to talk to, still refuses to go talk to a therapist once or twice a week. There is a special program in her town designed to deal with geriatric mental health issues.
Mom says it’s because they won’t come to the house. The doctor wants to encourage my mom to stay active and get out of the house. The personal care service can and does drive her to any appointments.
Perhaps it is more of a generational issue. Mom comes from a generation that quietly bore their burdens, versus jumping on the therapist’s couch. Psychoanalysis was more of an upper-class pastime than something the average person engaged in. Now, therapy is recommended for just about anyone, even children.
But maybe we need to rethink senior therapy to encourage more people like my mom to participate. Perhaps an initial home visit/assessment, then subsequent office visits. When you physically feel lousy, you are going to feel even more depressed but may not feel like getting dressed and leaving the house.
Once my mom connects with someone, it lifts her spirits and she is willing to be more flexible with her routine. For example, sometimes the personal care attendant can only come at 10am, which is early for my mom. Guess what? Mom has adjusted just fine.
This is probably a short-term issue, as I have a feeling baby boomers will have no problem with therapy, but it does make me feel for all of those lonely, depressed seniors isolated in their homes right now. I wish we could reach out to them effectively. (Mom refuses to go to the Senior Center as well!)
Are there programs in your community that are designed to help seniors battle depression or loneliness?
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I’m sure we’ve all heard of the saying, “She is set in her ways.” This tends to become more true as one ages. Our elderly loved ones have a certain schedule, or a certain way of doing things, and a disruption of that schedule can cause them great stress.
I’m a little like this already and I’m only 40!
But what made this clear to me was spending time with Mom this past week. We still have not figured out what is wrong with her, but we finally were able to see the specialist. He wants to rule out the return of cancer, so he has ordered a colonoscopy (ugh) and an EGD. Mom wasn’t thrilled with the idea of more testing and the preparation involved for it but knows it is necessary.
If there is no cancer, her abdomen muscles can be surgically repaired so her stomach doesn’t protrude, which seems to cause her constant discomfort. But first, we have to increase Mom’s weight and strength. She is down to 100 pounds (has lost a shocking 30 pounds in 8 months.)
The specialist is a young guy that is into natural supplements in addition to medicine. While I truly embrace this approach, when he recommend my 77-year-old Mom start juicing, I had to force myself not to laugh. While I don’t doubt the benefits of fresh juice (though I do think the benefits are overstated and the high sugar and low fiber in juice is a concern), the doctor clearly needs to consider a patient’s age and situation when making care recommendations.
He knows Mom lives alone, and to ask a frail old lady to go buy a bunch of produce, wash it and process it through a juicer, and then go through the tedious clean up progress is totally overwhelming. I purchased her some pricey but convenient organic juice mixes instead.
The doctor also recommended spirulina supplements. After researching I’m on the fence about the benefits, but at least this is an easy step for Mom to take (comes in capsule form.)
He also recommended upping her daily Ensure drinks. I found a Boost very high calorie variety that has 530 calories. Also I got her a flavorlees calorie supplement that you mix into food. These are small steps that Mom can handle on her own.
Still, when I called her after returning home, she was overwhelmed by the new medications ordered by the doctor and the supplements I had sent. She said she knows everyone is trying to help her, but it is a lot to process.
And so it is. Just something to keep in mind when we introduce change to our loved one’s routine. Try to make it as simple and smooth as possible, and take time to explain why the change has to occur. Change can be hard for anyone, but as caregivers we can try to soften the blow.
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This past weekend, I set out to walk to the grocery store, a normal weekend routine. As I got closer to my destination, I saw roads were blocked off, and then heard the distinct sound of a parade.
Of course, it was a St. Patrick’s Day parade! I had even rearranged an appointment to avoid running into the parade. And here I was, stopped dead in my tracks, having completely forgotten what time the parade started.
At first, I was a bit annoyed, because I had to be at work in a few hours. But then I couldn’t help but think of Dad, and how much he would have enjoyed the parade, even though he didn’t like the commercialization of the holiday. He would have loved seeing the police and firemen and the traditional Irish dancing groups.
And of course, the music.
So I allowed myself to just take in the scene, all of the sights and sounds.
As I’ve written before, Dad helped with the 1959 St. Patrick’s Day parade in New Orleans. I still need to do some digging research-wise to find photos from that year’s parade, but here is the scene from the 2008 affair in the Big Easy.
Embed from Getty ImagesWandering is one of the more terrifying aspects of dementia. This is a simple method that could be used to reduce wandering episodes at home and in facility settings. My dad was a walker for sure!
The following is part of an assignment I completed for the University of Wollongong Masters of Science in Dementia Care degree I graduated in last year, and highlights how allowing residents in aged care to walk regularly, can positively impact their life, as well as reduce what others see as ‘challenging behaviours’!
Specifically, we were asked to use the BEET tool workbook (this tool allows clarification of the question behind the issue, idea or problem, including behaviours of concern, by ascertaining the reasons for seeking engagement and change, evaluating the evidence, identifying who else we need to engage with and describes a process by which everyone concerned can meaningfully engage in partnership. In this way, it strives to be person centred, as it is inclusive of the client or resident.
The structure of the BEET tool is designed to allow clarity around the issue, to involve all stakeholders, to be…
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I watched an interesting Frontline special about end-of-life issues, from the perspective of a doctor treating terminally ill patients. The show featured Dr. Atul Gawande, who wrote the book, “Being Mortal: Medicine and What Matters in the End.” The book came out last fall, but I have not had the chance to read it yet. Another one added to my wish list, so many good books, so little time to read them!
In the program, Dr. Gawande tracks other doctors and interviews them about their approach to end-of-life care. Because of some negative experiences, I sometimes unfairly assume that the typical doctor’s main goal is to prolong life for as long as possible, quality of life be damned. But this documentary highlights the emotional turmoil that doctors experience when they are forced to tell their patients that medically speaking, there is nothing else to be done and it is time to transition to palliative care. The doctors feel like they’ve failed their patients when they cannot heal them.
Some patients accept the bad news with peaceful resignation, others go into denial, and still others fight the good fight for too long. One of the saddest stories was of a young woman about to give birth who was told she had stage IV lung cancer. She gave birth with a collapsed lung and immediately began a harsh and toxic treatment regimen. Of course one can understand why, she had so much to live for! But her husband now regrets the time she spent so ill from the treatment, which did nothing to extend her life. He wishes they had spent more quality time together as a family.
While somber in nature, the program offered a variety of takes on how to approach end-of-life care. It’s worth checking out. I watched in on the PBS channel on Roku.
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Excellent review. Looking forward to seeing this, as I have been following his journey with Alzheimer’s and his remarkable tour.
This week, I saw both I’ll Be Me and Still Alice. They were very different, but each was spectacular in its own unique way.
I think the Glen Campbell movie was the more difficult for me to watch for several reasons. The fact that it’s a true story makes it especially poignant, and for people of my generation it’s shocking to see an icon like Glen Campbell declining in this manner. As expected, there were also moments that reminded me very much of my mom.
I’ll Be Me is a documentary about Glen Campbell’s 2011-2012 farewell tour. The family decided to move forward with the tour despite the Alzheimer’s diagnosis Glen had received. Those closest to him didn’t expect the family to be on the road for more than five weeks; however, the superstar surprised everyone. The tour played more than 150 shows over the period of a year…
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So I finally was able to set my mom up with a personal care service, in addition to the home nurse visits. The personal care attendant was supposed to take my mom grocery shopping yesterday afternoon. Around noon, I was at work and received a call from a number that I did not recognize but with the same area code as where my mom lives.
I answered and it was the woman who runs the personal care agency. She said the attendant going to see my mom finished up a bit early with her previous call and she headed over to my mother’s house a bit early. But she knocked on the door multiple times and there was no response.
So of course I go into immediate panic mode in my head. Just like in those commercials, Mom’s fallen and she can’t get up!
I told the woman I would try calling her phone number and if she didn’t respond, there is a house key in a lockbox on the property.
I could feel my heart pounding with every ring on my mom’s line. Finally, Mom picked up. She sounded a little frazzled.
Turns out Mom was getting ready in the bathroom which has a loud heat vent. She couldn’t hear the knocking.
So Mom was okay, just a bit annoyed that the attendant was early … don’t mess with elderly people’s schedule! This is true also for those with dementia, any change of plans or a schedule can really upset them. It’s something many of us caregivers have learned the hard way.
It took a while for my heart rate to return to normal, but so grateful that it turned out to be a false alarm.
What kinds of false alarms have you experienced as a caregiver?
I stumbled across this blog via a Facebook post. I’m not a religious person, but this blog post by Rev. Katie Norris is particularly relevant to those of us long-distance caregivers who struggle with guilt.
We should focus on happier times with our loved ones, not the final moments.
Norris has had to make the decision whether to return home for her mother’s last days multiple times. Dying of course is not a nice and neat affair, and one can be slowly dying for years. Most of us would like to be there when our loved one passes, but Norris points out that we have to accept our lack of control in this situation and that our ideal ending may not happen.
Ultimately, we must focus not on the ending, but the middle, on that time spent with our loved ones during the bulk of our lives.
I thought this was such a simple but profound philosophy. It’s a lesson that really hits home with me, because I have struggled so much with not being there when my father died.
I wanted to pass along the message to those of you who may be struggling with guilt or regret.
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