I recently was interviewed for a new caregiving project called Open Caregiving. The website serves as a collection for caregivers to share their experiences and offer advice to other caregivers. I was happy to participate.
If you would like to share your caregiving story, fill out this form.
One of the pieces of advice I offered that proved to be a key for me in thinking about my father’s dementia was to learn how to accept the “new normal.” While it is natural to lament what your life was like before, who your loved one with dementia was before the disease changed them, it is not helpful to be consumed with the past. Cherish those memories and try to focus on the present.
This was very hard for my mother and I to do as my father’s Alzheimer’s disease progressed further. My mother couldn’t help but correct all of the mistaken memories or gibberish that came out of my father’s mouth and I felt shame and embarrassment for my father’s state of mind. I knew how mortified he would be if he could see himself in that state of mental decline. I discuss this further in my book, The Reluctant Caregiver.
But what helped once my father was in the memory care center was simply to visit him and enjoy his company in that moment. If that meant getting him a cup of coffee or navigating him around the outdoor area for a stroll, then that was enough. I would no longer be able to discuss politics or sports with my father but I could still hold his hand and tell him I loved him.
I hope you are finding ways to adjust to the new normal as you wind your way through your own journey as a dementia caregiver.
I connected with this post on many levels. I am an only child as the author is and I often think about how various diseases, especially dementia, would challenge my fierce independent streak. There is such a valuable lesson here for those who are encountering the early stages of dementia and dementia caregivers.
When I was in my 20’s, I spent a lot of time volunteering for hospice. One of my first hospice patients was a woman in her 60’s who had dementia. Her son lived with her, but he needed a weekly respite. I was told she was active and liked to go for walks. In fact, […]
via “Solo” Walks (aka I Walk Alone But It’s Fine You’re There) — When Dementia Knocks
This blog post written by Elaine M. Eshbaugh, PhD, has such a good message for all of us right now, especially caregivers. It is so true that you must learn to “let go” when dealing with dementia. Those of us who have been dementia caregivers have navigated our ways through “new normals” before. Stay safe and don’t be too hard on yourself.
So what’s your personal 2020 theme? (Can you answer this question without using a four-letter word that would’ve gotten you in trouble at recess?) You’ve got your personal and family challenges, which likely include dementia since you are reading my blog. You’ve got whatever chaos is happening in your community. Maybe people are arguing about […]
via Why Dementia Means Letting Go (and Why My 2020 Theme is “Let Go”) — When Dementia Knocks
This is a great list from We Are Dementia Strong. Basically it boils down to treating your loved one with dementia like the person you’ve known, not solely by their dementia. This disease tries to strip people of their humanity and its caregivers’ duty to try and maintain dignity whenever possible.
Some other friends just may find it too hard to see me like I am. I didn’t like seeing my Grandfather or my Mother while they were on their Alzheimer’s Journey so, I understand.
via Are There Do’s and Don’ts When it Comes to Dementia? — We Are Dementia Strong
A caregiver’s job was stressful enough before the coronavirus pandemic struck the world. But now, social isolation and anxiety, along with financial concerns, may feel overwhelming.
Over the last few years, I’ve spent time looking for ways caregivers can find a bit of respite, even if it’s just for an hour or an afternoon. What I learned from my work on Respite Care Share was that many caregivers aren’t seeking traditional respite care, which involves taking a longer physical break away from their loved one. While they would love a caregiving break, they worry about placing their loved one, especially those with dementia, in the care of a stranger while they’re away.
Based upon that feedback, I started focusing more on self-care, and finding realistic ways a caregiver can find some solace even in the midst of caregiving. It may be a cup of tea in the morning before everyone else is awake; it may be sitting in the garden while your loved one naps. Reading a chapter of a book after your loved one goes to bed. Listening to a favorite song while your loved one is occupied with an activity. It may not seem like much, but it can make a positive difference.
These are all things that can also be done during times of self-isolation. Supplements and herbal remedies may be helpful (but check with your doctor first.) On CBD for Caregivers, I published a post about relaxing beverages which are either non-alcoholic or lower in alcohol. The good news is that there are a variety such beverages available now, and many are quite tasty! One of my new favorites is Hella Cocktail Co.’s Bitters & Soda. It’s a nice beverage to sip while sitting outside in the area of the yard I’ve transformed into my respite corner.
Challenging times like these can find us slipping into bad habits like excessive drinking, smoking, overeating, etc. I hope you have or can find a healthier way to navigate these stressful times while keeping you and your family safe.
Honored to have been able to share my caregiving experience that inspired The Reluctant Caregiver included in this collection.
Life these days is turned upside down for most of us, due to the COVID-19 pandemic. There is so much uncertainty, fear, and loss. Those of us caring for loved ones with Alzheimer’s and other dementias find ourselves stressed, not only from our usual pressures but the new ones the virus has delivered: stay-at-home orders…
via Stay at Home with a Good Book – AlzAuthors Anthology Two is Now Available in Paperback — AlzAuthors: Alzheimer’s and Dementia Books, Blogs, Stories
While coronavirus is claiming so many lives around the world, this week I am mourning a metro Atlanta man, Steve Dezember, who died this week after a 9-year battle with ALS.
I don’t use the term “battle” lightly and am aware of the negative connotation such terminology can engender. But in this case, I believe the term applies. Steve showed courage, grace and humor as he fought back time and time again against all odds. I have followed Steve’s story for years after watching the moving documentary, Hope for Steve.
I’ve also followed the social posts from his wonderful, equally courageous and compassionate wife Hope has shared about the challenging ALS caregiving journey that are so enlightening. I love how she embraced the importance of self-care and wasn’t shy about sharing the difficulties along with the triumphs of being a long-term caregiver. The couple also shared the financial challenges that a disease like ALS creates. Steve made paintings from his wheelchair and Hope also created a variety of art that they used as fundraisers to support his care. A painting of his hangs on the wall of my bedroom.
Following Steve’s journey over the years has made me more appreciative of having good health and in enjoying the simple pleasures of life. It made me admire the sacrifices that spousal caregivers make to tend to their loved ones. And even though this world can seem like a miserable world to be sometimes, watching Steve fight for another day offered an important perspective.
If you have the means, consider donating to an ALS charity in the name of Steve Dezember. Learn more about his journey and share his story. Keep his lovely wife Hope in your thoughts and prayers.
I hope you and your loved ones are staying safe during this challenging time.
Google’s Super Bowl commercial, “Loretta,” touched a nerve. I was very moved by the love story the commercial told, inspired by the grandfather of a Google employee. The ad shows how technology (in this case, Google Assistant) can be put to good use, allowing a man to fondly remember his late wife through images and sound. Many people felt the same way I did about the commercial, but a vocal minority expressed their reservations.
While I can understand people’s concerns about privacy rights and the automation of our lives, we can’t let our fears trump the benefits that technology can offer. For example, in this commercial from Google, a simple tool offered many benefits, especially to older generations and their caregivers.
- Digital photo album: While those of us of a certain age may treasure our physical photos, we have to understand that for younger generations, digital photographs are the norm. I love looking at old photos in physical form, but I also love having access to those same images online. It also makes sharing from afar so simple. In this day and age, when family members often don’t live near one another, this can be a major benefit.
- Using reminders to prompt memories: While critics found this feature creepy, those of us who have dealt with dementia in our families know how precious memories can be. I know of a family caregiver who writes out cards with explanations to the daily questions she receives from her mother who has dementia. The cards are a great source of comfort to her mother (and sanity-saving for the family!) A smart assistant could recite the recorded answers.
- Combatting loneliness: This point is controversial, as I read one commenter who interpreted the Google commercial to mean that we have permission to leave old lonely people on their own with a smart device as a substitute to visiting them. I don’t interpret the ad like that at all. But loneliness among the elder population, especially in rural areas, is a real concern. Anything we can do to alleviate that isolation can be beneficial both mentally and physically. My mother had a talking parrot toy she talked to when Dad moved to the memory care center. The need is there for such interactive devices.
I strongly feel it is in our best interest to embrace technology while holding companies accountable when they violate privacy rights and engage in other nefarious activities. Bottom line, technology is not going away. I prefer to educate myself and others on the benefits and be a responsible user versus burying my head in the doomsday bunker.
Good tips! It’s so easy to overlook all of the alterations needed to keep an elder loved one, especially one with dementia, safe in the bathroom. My mother did not have dementia, but she fell and broke her shoulder while using the toilet in the middle of the night. She never fully recovered from that injury, and her mobility was limited because of it. Falls in the bathroom are all too common, so beware the risks and take action to keep your loved one safe.
Sign up to get these posts and a whole lot more delivered right to your inbox! The Diary of An Alzheimer’s Caregiver – Appreciate the good, laugh at the crazy, and deal with the rest! A primary concern of senior citizens is whether they can continue to live independently as they get older. Their loved…
via Bathroom Safety Tips For Seniors — The Diary of An Alzheimer’s Caregiver