Tag Archives: dementia

Dealing with dementia in an intimate relationship

Many of the people I follow on WordPress are dealing with a parent or grandparent with dementia. A few are dealing with a spouse, and with this, comes an entirely different and complex set of issues.

I finally got around to reading the memoir, “Jan’s Story,” by CBS correspondent Barry Petersen. The book has generated some controversy. Petersen’s wife, Jan, was diagnosed with early-onset Alzheimer’s at the age of 55. Petersen’s account of how Alzheimer’s impacted their relationship is frank and heartbreaking. After arranging for her care at home for several years, he finally places her in a residential facility as the disease progresses. Eventually, at the point where his wife barely remembers who he is, he begins a tentative new relationship with another woman.

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It’s the latter details that many find distasteful. Some of the couple’s friends turn against him, and some readers of his memoir feel he is selfish in his actions.

I certainly do not feel I am in the position to judge other caregivers, as there are many things I would do differently in dealing with my father’s dementia. I think hearing the male perspective is important when it comes to being a caregiver of a spouse with dementia. The breakdown of intimate relations is a side effect of dementia that many would rather not discuss. For Petersen, the loss of intimacy with his beloved partner is devastating. The transformation from lover to parent is traumatic. The difficult decision he makes are agonizing for him and I don’t believe were made on a whim.

The book brings up a host of interesting questions. Especially with early-onset Alzheimer’s, should the caregiver be left in relationship limbo when it may take a decade or more for the disease to finally cause physical death? As long as one provides good care for their spouse, is it acceptable to find affection outside of their relationship?

For some, “until death do you part” means just that, no exceptions. I respect that. But dementia has a way of turning the normal way of doing things upside down.

For those wondering, Jan died in 2013, a few years after the memoir was published.

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Showing appreciation for the dementia caregiver community

A big thank you to Neighbor Nancy and Ann Ahnemouse for nominating me for a Very Inspiring Blogger Award. Nancy I have had previous contact with but I don’t believe I have with Ann, so it was a pleasant surprise to hear she had been following my blog for quite some time. It is yet another reminder of the wonderful community of caregivers waiting to be found in the blogosphere.

The rules are simple:

Thank and link to the amazing person who nominated you.
List the rules and display the award.
Share seven facts about yourself.
Nominate 15 other amazing blogs and comment on their posts to let them know they have been nominated.
Proudly display the award logo on your blog and follow the blogger who nominated you.

7 facts about me:
– I have Celiac Disease, and have been on a gluten-free diet since 2005.
– I’m a cat lover.
– I like my coffee black, no sugar.
– I’m a bourbon aficionado.
– I was born and raised in California, but have no interest in returning.
– A big Greek salad is one of my favorite meals.
– Stephen King is one of my favorite authors.

Bloggers you should follow (For sake of time, I have less than 15 but will try to add more soon!)

My Neighbor Miss D Nancy is a devoted elder advocate, and has been the driving force in helping a neighbor in her building who has dementia return to her home after she suffered abuse from family members.
Ann Ahnemouse As I said, this is a new blog for me, but she’s been posting for a few years! Ann writes about her journey with her partner, and how his dementia impacts their lives.
terry1954 I’ve been following Terry’s blog for quite a while. Terry was the sole family caregiver of her brother, who had MSA. He died this year, and while the end of his suffering was indeed a blessing, there is a giant hole left behind when our loved ones depart, no matter the circumstances. Terry is a fearless writer who shares her thoughts on many topics.
Alzheimer’s Speaks: Lori La Bey is a tireless advocate for caregivers. She has a radio show as well!
SaveEveryStep: You should subscribe to this blog for the weekly “Joe’s Letter” post alone. The letters are from the blogger’s uncle from WWII and they are so fascinating! If you love nostalgia, you’ll love her blog, as she often writes about the fashions and music from her childhood and adolescence. But Helen Spencer founded the website, SaveEveryStep.com in memory of her mother. She is giving back to the world by allowing you to capture your own family’s memories and preserve them for free, a useful service to anyone, but especially for families touched by Alzheimer’s and dementia.
Hot Dogs and Marmalade: This blogger’s mother has Alzheimer’s and she writes both poignant and humorous accounts of her family’s life. You’ll have to read her blog to find out the reason for the unusual title of her blog!
My Demented Mom: Kathy Ritchie doesn’t sugarcoat one bit of her experiences caring for her mom, who has frontotemporal dementia. Kathy is in her 30s and is now a mother herself. Her blog is breathtaking in both its agony and in the way she expresses her love and dedication to her mother.
Quilt of Missing Memories: Talk about a family devastated by dementia. Jacquelyn’s father, mother and husband all have a form of dementia. Her father has passed, and late last year, so did Jacquelyn’s husband. I appreciate this blog because of the simple and joyous photos and short poems that are posted on a regular basis.
Lori’s Lane While not a caregiving blog in particular, the blogger did find herself in that role when her husband suffered a serious accident on the job. I love this blog for the insightful posts and the uplifting quote every Friday.

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Is unexplained weight loss an early symptom of Alzheimer’s?

I came across an interesting article about a piece of Alzheimer’s research I had not heard about before. Apparently, researchers at Weill Cornell’s Feil Family Brain and Mind Research Institute found a possible connection between the buildup of amyloid-beta peptides and weight loss. The peptides create the notorious plaques in the brain that is commonly associated with Alzheimer’s disease. The otherwise unexplained weight loss often occurred several years before symptoms of cognitive decline were diagnosed.

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According to the researchers, the amyloid-beta peptides interfere with the body’s ability to regulate its weight. If the research proves to be accurate, it is yet another cruel and devastating way Alzheimer’s destroys the body.

My dad was always on the lean side so it’s difficult to say if he suffered from weight loss early on in the disease. By the mid to late stages, my father was certainly wasting away, but up until the last couple of months of his life, he had a voracious appetite.

The more we learn about Alzheimer’s, the more we understand that this disease can manifest itself in ways we never imagined before. Alzheimer’s is not just about losing your memory; the disease attacks the brain in ways that can impact everything from swallowing to weight control.

Did you notice otherwise unexplained weight loss in your loved one before they were diagnosed with Alzheimer’s disease?

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Guest post: Diagnosing Alzheimer’s Disease: How Can Loved Ones Help?

A new case of Alzheimer’s disease is developed every 67 seconds. Meanwhile, the number of Alzheimer’s patients is on the rise, with the numbers expected to double or even triple by the year 2030. This degenerative brain disease affects millions of people around the world…and has no known cure. Over time, it impacts your memory function, mood, and even your independence. With so many life-altering symptoms related to the disease, early detection is key. Unfortunately, obtaining an Alzheimer’s diagnosis can be difficult.

Dr. David Tal of the Age Matters Clinic in Toronto.

Dr. David Tal of the Age Matters Clinic in Toronto.

Despite the fact that Alzheimer’s affects the lives of men and women across the country, diagnosis can take months or even years. Why is this the case? Early symptoms may appear to be signs of other diseases or may be dismissed as issues related to aging. This can prolong proper diagnosis, which in turn causes patients and loved ones to feel frustrated and powerless. Are you wondering what you can do to speed things up? Then you’ll need to understand how Alzheimer’s disease is diagnosed – and what to be on the lookout for.

Early diagnosis is important. For starters, it allows families to look at treatment options for symptoms related to the disease, like depression. It also gives patients and their loved ones the opportunity to focus on a healthy diet and lifestyle. This has been found to slow down the progression of the disease. In addition, early diagnosis gives family members more time to find appropriate care plans for the patient as the disease progresses. However, the reality is that Alzheimer’s disease cannot be diagnosed completely accurately until after death. That is why a proper diagnosis can be drawn out. Doctors use a process of elimination that has an accuracy of about 90%.

It starts by finding out more about the patients’ medical history. This allows doctors to determine whether there are other medical issues at play and how to come up with the best treatment plan for their needs. Some of the questions your loved one will be asked include: Are you taking any medications? Do you have a family history of dementia or Alzheimer’s disease? Are you dealing with any current illnesses? What type of issues or symptoms have you been experiencing? and so on. The answers to these questions will help the medical professional get a better understanding of the situation.

From there, the doctor will give a mental state exam to test the patients ability to problem solve, their memory skills, and attention span. This can reveal whether or not there has been a decrease in memory function. Next is the physical exam. This will let the doctor know more about their overall health and physical condition. It can also signal whether the patient has another medical problems that has similar symptoms to Alzheimer’s disease. X-Rays, blood tests, and brain imaging will likely be done as well to rule out any other potential health problems. The results of the questions, exams, and tests will help to pin point a diagnosis.

So, what can you do to help during this process? Show your support, take note of any changes in memory, mood, or behaviour, and ensure your loved one gets the proper medical attention they need. It is important to act quickly. The sooner your loved one is diagnosed, the better. If you feel unsure or overwhelmed, seek the help or advice of a professional.

Have you noticed a friend or family member showing signs of Alzheimer’s disease? Then help them take that first step towards diagnosis. It may seem scary at first – but receiving a medical assessment will lead to a plan of action. Whatever the outcome, remember: your love and support can make all the difference.

About the author: Dr. David Tal has more than twenty years of clinical experience. He manages the Age Matters Clinic┬áin Toronto, Canada. He strongly believes that medical treatment can improve the life of Alzheimer’s and memory loss patients.

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Free Alzheimer’s books in honor of The Longest Day

UPDATE: Thank you to all who requested a book. Your copy will be mailed soon. And a big thanks to all of you who participated in The Longest Day.

Today the Alzheimer’s Association sponsors The Longest Day, where from sunrise to sunset everyone is encouraged to participate in Alzheimer’s awareness activism.

Chicken Soup For the Soul: Living With Alzheimer's and Other Dementias

My way of participating this year is to offer a free copy of “Chicken Soup for the Soul: Living with Alzheimer’s and Other Dementias” to anyone who is interested. I have a limited supply, but I can fulfill several requests. They will be handled on a first come, first serve basis. If you would like me to send to a friend, relative, organization, etc. I am happy to do that as well. I just want these inspirational and moving stories to find a good home where they will be appreciated by others who are on a similar journey.

Rest assured I will never share any contact information with anyone else.

I will cover all shipping costs. Simply email me at joyjohnston.writer@gmail.com or leave the mailing info in the comment section below. I will update this post when I have received the maximum number of requests that I can fulfill.

What are you doing for The Longest Day?

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Sharing a loving memory on Father’s Day

A recent survey found that dads often get the short end of the stick when it comes to gift-giving on Father’s Day. It seems most of us spend more on our mothers than our fathers. Many people say mothers are easier to shop for, and seem to appreciate gifts more than fathers.

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But for those of us who have lost our fathers, or are losing them slowly due to dementia, it is too late to worry about something as trivial as gift-giving. The best we can do is share a loving memory of our fathers, to offer to the world a glimpse of what this special person meant in our lives.

Two loving memories come to my mind this Father’s Day. The first is the lengths my dad went to in confronting the family of the bully who pushed me down at a preschool Halloween party. Dad wasn’t going to let anyone hurt his little girl! The second was just a year or so before Dad began his battle with dementia. He had filled out a prayer card for me, relating my struggles with Celiac disease. I had no idea he was paying attention when I discussed my condition.

After all of those years, Dad was still looking out for his little girl.

What are your favorite memories of your father? How do you honor him on this day?

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Let’s talk about guns and dementia

Here’s an important topic for family members to discuss: gun ownership and seniors, especially those who have been diagnosed with dementia. While there is quite a bit of awareness of the need to take the car keys away from those with dementia when their driving skills become impaired, there is little discussion about another deadly weapon found in many households. As part of the “caring for our aging parents” #Blog4Care blog carnival, please spread awareness about this topic so that families can have discussions about the proper precautions needed in their homes. Perhaps we can help prevent injuries and save lives.

If you’ve been following the news in America recently, there has been a slew of tragic shootings that have once again ignited the gun debate. The issues surrounding gun ownership and gun violence are being passionately debated right now. But one angle of this issue I never thought about before involves seniors and guns.

gun

An intriguing post on Alzheimer’s and Dementia Weekly made the point that more seniors own guns than any other age group. With the increased risk of dementia as one ages, this could create a dangerous situation. The article quotes Dr. Ellen Pinholt, who wrote in the Journal of the American Geriatrics Society that as family members, we should think about seniors and guns the same we do about seniors and driving. While there is no maximum age limit for owning a gun or driving, mental health status should be taken into consideration for both situations.

Dr. Pinholt recommends asking “the 5 L’s” when it comes to gun ownership and seniors. The questions include if the gun is locked, if it is loaded, if there are children present where the gun is located, whether the senior is depressed, and whether the senior has been diagnosed with dementia.

Sounds like simple and sane advice for an issue that is so complex and controversial. Still, I think it is just as important to consider the issue of having a gun in the house as it is allowing a person to drive once they’ve been diagnosed with dementia. It is yet another question to add to the all-important discussion with your elderly parents and the rest of your family.

While stereotypically, these random mass shootings tend to be perpetuated by young men, anyone who has a condition that impairs the brain and impacts judgement and emotions should probably have their access to a gun restricted, to protect themselves and others. I’m not a fan of legislative restrictions on personal liberties, but when someone’s safety and society’s safety is at risk, smart and limited restrictions may be appropriate.

While there is not a good substitute to driving a car, seniors with dementia may be able to handle a replica gun that either shoots a safe-type pellet or even better, a replica gun without ammunition. Of course, immediate supervision would be necessary. As caregivers, we should try to allow our loved ones with dementia to enjoy their hobbies as long as possible, if safety measures can be taken.

What do you think about the issue of gun ownership and seniors, especially those with dementia? Should guns be immediately removed from the household upon a diagnosis of dementia or are there alternative and less drastic solutions to consider?

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