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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Caregiver Grief, Mourning, and Guilt

Joy Johnston:

As caregivers, we spend a lot of time trying to understand the emotional changes our loved ones with dementia are experiencing. But just as important to understand is the emotional upheaval we as caregivers are going through.

Originally posted on Caregiver 2.0:

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It’s normal to feel loss when someone you care about has Alzheimer’s disease. It’s also normal to feel guilty, abandoned, and angry. It’s important to acknowledge these emotions and know that you may start to experience them as soon as you learn of the diagnosis.

Alzheimer’s gradually changes the way you relate to the person you know and love. As this happens, you’ll mourn him or her and may experience the stages of grieving: denial, anger, guilt, sadness, and acceptance. These stages of grief don’t happen neatly in order. You’ll move in and out of different stages as time goes on. Some common experiences in the grieving process include:

Denial

  • Hoping that the person is not ill
  • Expecting the person will get better
  • Convincing yourself that the person hasn’t changed
  • Attempting to normalize problematic behaviors

Anger

  • Frustration with the person
  • Resenting the demands of caregiving
  • Resenting family members who can’t…

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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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The Layperson’s Guide to Palliative Care for Our Loved Ones with Dementias and Alzheimer’s Disease

Joy Johnston:

Sadly, I did not fully understand what palliative care offered until it was too late for my dad. This post is a great primer about what services palliative care offers and where it fits in with the care plan for your loved one.

Originally posted on Going Gentle Into That Good Night:

In the post “The Layperson’s Guide to Home Health Care for Our Loved Ones with Dementias and Alzheimer’s Disease,” we discussed what home health care is, when it should and can be used, and what services it provides.

In this post, we will discuss what palliative health care is, when and why it should and can be used, and what services it provides at home for our loved ones with dementias and Alzheimer’s Disease.

Although, as any caregiver can tell you, dementias and Alzheimer’s Disease are always on the radar with our loved ones who have these neurological diseases, there are often other health-related and age-related illnesses that our loved ones are also dealing with, especially if they’re elderly.

Home health care services are available – and should be used – when there is an acute medical condition that needs to be monitored and resolved (if possible) after our…

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Dodging the health crisis bullet … for now

Recently, I wrote about my mom experiencing a mysterious pain in the same general area of her colostomy surgery. She had a few other vague symptoms that warranted further testing. The oncologist ordered CT scans of the abdominal area and the chest.

Unfortunately I had to get back to work so Mom had to manage the scan prep on her own. Even though Mom certainly has her eccentric ways, it is such a blessing knowing that she is still fully capable of handling things outside of her routine, such as going for medical tests. Yes, it was stressful for her, but at 77, she managed quite well.

mom-77-bday

The tests were done right before my birthday, with the results coming back the next week. I admit I spent a pretty good chunk of my birthday weekend mulling “worst case scenarios.” The colon cancer was back. The cancer had spread to another region. What would I do this time? I cannot afford to quit my job again. How would I afford Mom’s care.

Mom had a followup appointment with the oncologist on Wednesday afternoon. I was both eager to hear the results and dreading them at the same time. Finally, Mom calls. For once, she didn’t beat around the bush. (If it had been bad news I had a feeling she would have delayed the announcement.)

All of the tests came back normal. No cancer was detected. Mom was given a clean bill of health. Now of course that doesn’t solve the mystery of Mom’s pain (she insists on calling it a “discomfort.”) But the pain has not increased in intensity so far and it doesn’t stop her from going about her life.

So a sigh of relief, for now. As caregivers we are always ready for the next health crisis. But we also learn to appreciate those good days a bit more.

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“I Can’t Do This!”

Joy Johnston:

No matter how tough you think you are, caregiver burnout is a real condition. Know the signs and don’t be afraid to ask for help!

Originally posted on Georgia Chapter Blog:

Caregiver Stress

Caregiver Stress

By Theresa Bayman, Program Director Coastal Region

Recently, a member of one of my support groups (with whom I have become very close),  reached her caregiver “breaking point.” Most, if not all caregivers, find themselves at this point at least once throughout their experience. This particular caregiver is a retired nurse – which you might think would give her a leg-up when it comes to care-giving for a loved one at home – but you’d be wrong about that.

When it comes to caring for someone we love, especially a parent or a spouse, the playing field is leveled.  Dementia care-giving is unlike most other care-giving experiences because of the ever-changing needs and limitations of the person receiving care.  With many illnesses, a caregiver can ask the patient “Are you in pain?; Are you hungry?; Would you like some company?”  With a dementia diagnosis, caregivers do not always have…

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Turning 40: My hopes for the next decade of my life

This Saturday, I turn 40. I’m not one to worry about wrinkles or grey hairs. My recent physical showed that I’m in good health for now.

But considering the health issues that have impacted my family over the last several years, I can’t help but worry.

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It is somewhat ironic that if you had asked me before my parents became sick, I would have chosen Alzheimer’s and cancer as the diseases I dread most. Little did I know that I would have to face both diseases head-on, with dementia striking my dad and colon cancer striking my mom. I always figured Dad would get cancer, being a smoker since he was 16. Mom doesn’t smoke and eats a mainly vegetarian diet, and she gets colon cancer. Go figure.

With Mom’s health in the balance again, it’s not really feasible to make concrete plans for my 40th year, let alone the next decade of my life. But then again, if life has taught me anything over the last few years, it is to live in the here and now.

Still, there are a few wishes I have that I hope I can make come true over the next decade of my life.

  • I want to write a book. Whether it be memoir, fiction, or self-help, I’m not sure yet. Maybe one of each! I’ve lit my creative flame again over the last few years, but I know it will take hard work and focus to keep it glowing. And yes, I do want to publish the book, even if I have to go the self-publishing route. I plan on signing up for a writer’s workshop this fall.
  • I want to visit my father’s homeland, Ireland. I had planned on doing this in my 30s, or as a special gift on my 40th birthday, but alas, that is not going to happen. But I can still make it happen over the next few years. Making that family connection is important, and I think will hold greater meaning for me now than ever before.
  • I want to continue and expand my Alzheimer’s awareness work. In particular, I would like to do more hands-on advocacy work.

I’ve been through many life-changing events over the last decade, and I’m sure I will face more moments, both good and bad, over the next decade. My 40th birthday wish is that I approach these moments with a bit more wisdom, and much more compassion.

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