alzheimers, alzheimers caregiving, caregivers, caregiving, dementia, national family caregivers month
November is National Family Caregivers Month, an opportunity to focus on the challenges and needs of the more than 60 million Americans caring for family members across our country. As the population ages, so does the demand for caregivers. Consider this: In 2013, over 15 million caregivers provided an estimated 17.7 billion hours of unpaid care for loved ones living with Alzheimer’s or another form of dementia. Those numbers are astounding, and they’re on the rise.
The natural tendency is to think of a caregiver as someone who cares for a loved one at home on a 24×7 basis; however, the role takes on many forms. Are you working full time and looking after a parent who still lives independently? Are you still raising children while simultaneously handling household tasks for your mother who is in the early stages of dementia? Do you oversee the care your spouse or parent is receiving in an assisted living or skilled nursing facility? These are all examples of the modern day caregiver.
If you or someone you know is a member of this ever growing demographic, I hope you’ll read on as I share five important tips to help caregivers achieve the balance and peace they dream of.
Accept help. Although most caregivers are stressed out, burned out, and worn out, they often have a difficult time asking for and accepting the help they desperately need. While doing some research in 2013, I came across the Lotsa Helping Hands website and it remains at the top of my list of recommendations. This powerful tool is free and provides caregivers with a central location to post tasks with which they could use help. Many times, family members and friends want to help, but just don’t know how – Lotsa Helping Hands solves that problem. Visit the website to find out more about how it works.
Consider some form of respite care. Simply put, you need a break. It doesn’t have to be a week in the Bahamas (although that would be nice), but scheduling an hour or two to go shopping, take a long walk, meet a friend for coffee, or just read a book can do wonders for the psyche in those moments where you feel ready to throw in the towel. To learn more about respite care, visit the ARCH National Respite Network or the Eldercare Locator website.
Find a support network. I can’t stress enough just how important this is. While friends will do their best to understand what you’re going through, nothing can replace connecting with another human being who has walked in your shoes. Contact your local Alzheimer’s Association chapter or Office on Aging for a list of available support groups. If schedules or lack of respite care prevent you from attending in person meetings, there are plenty of wonderful online options including the USAgainstAlzheimer’s, Memory People, and Alzheimer’s & Dementia Caregivers groups on Facebook, the Caregiver Action Network forum, and the Alzheimer’s Association’s ALZConnected online group.
Get organized! Check out technology designed to help caregivers stay organized; one of my favorites is a smartphone app called Carezone. If you aren’t tech-savvy, at a minimum, make sure important documents are in a safe place, preferably filed together in a folder or binder. Better yet, create a binder containing all pertinent information and documents from advance directives to a current medication list, insurance information, list of contacts, and medical history. There’s peace of mind in simply knowing that when you need something quickly, you know just where to find it.
Be gentle with yourself. We are our own worst critics, and caregivers are particularly susceptible to unhealthy self talk. Pay attention to your thoughts for a day and you’ll be surprised at how much time you spend beating yourself up. I recommend the book The Four Agreements, by don Miguel Ruiz, to all caregivers. The simple lessons found in these pages will increase your self awareness and help you manage guilt, stress, and expectations – both self imposed and those of others.
Please leave a comment if you have a tip to share with other caregivers. In the words of Charles Dickens, “No one is useless in this world who lightens the burdens of another.”
Be gentle with yourself was something I had to practice when caring for my mom with Alzheimer’s or my husband with cancer. We expect perfection from ourselves, but our loving devoted honest care is what works best. I had lots of help with my mom by the end of her life. Made all the difference.
Thanks for more help from the heart.
Ann Napoletan said:
Absolutely one of the most difficult aspects of caregiving. Add a natural tendency toward being a perfectionist and it’s a recipe for disaster. Thanks for reading and commenting, Elaine. xo
Catherine Evanoff said:
I have a question. Why won’t my Mother take her medicine? Why does she fight us tooth and nail? She will hold a pill in her mouth until we can see that it is dissolving into a white film in her mouth when she speaks. She would hold them under her tongue until we turned away then she would spit them out into a napkin. The problem is she would forget the pills were in the napkin. The dog got ahold of the napkin with the pills in it.
It’s 1:30 am, and she still declines to take her her pills.
Ann Napoletan said:
This quite normal, Catherine. There could be various reasons. It may be a control thing – refusing the meds is one of the few ways she has left to exert her control. Could be the bitter taste or that she has difficulty swallowing them. Or perhaps, she’s confused about what she’s supposed to do with them. You might ask the doctor and/or pharmacist if the meds are available in liquid form, a patch, or if the pills can be crushed and mixed into ice cream or putting. Here are a couple of links with other tips. I hope they’re helpful to you.
Or maybe she actually doesn’t want or need the medications. Maybe she knows best. My mother used to spit out the antipsychotic medications that she was inappropriately prescribed because she knew very well what they did to her – put her to sleep when she wanted to be awake and engaged with the world. Nevertheless, they shoved them down her throat, or crushed them into apple sauce or whatever. That’s abuse.
Ann, I think it’s criminal the way our elders are overmedicated. The first suggestion should be to conduct a complete medication review and to eliminate as many meds as possible. Polypharmacy is a real problem with the elderly http://www.medscape.com/viewarticle/732131_1 Please don’t respond with ways to make them take the drugs. The first step always should be a complete review of the meds by a COMPETENT physician who looks at the whole picture. Thanks.
Ann Napoletan said:
Of course, Susan. As you know, I am NOT in favor of psychotropic drugs as a substitute for proper, person-centered care, love, and engagement in life. It depends on what the medication is, where the person is in the course of the disease, and other factors. All of this should be reviewed carefully with a qualified neurologist specializing in Alzheimer’s/dementia care, and if a family isn’t comfortable with the first opinion, they should seek a second.
My mom had extreme back pain due to a compression fracture resulting from osteoporosis. We were able to use patches to control her pain – otherwise, she would have been miserable. We also struggled with blood pressure medication, antibiotics for UTIs, and Aricept. And, in the last few months when there was absolutely no way to comfort her, when she would scream for 10-12 hours until she was losing her voice but still could not rest, we gave small doses of Ativan in ice cream. At that point, it would have been cruel to do nothing.
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Ann, yes we are aligned on the issue of antipsychotics, and I agree it is cruel not to give pain medication when someone is in pain. However, I also think people are too quick to assume that medication is required when it may not be and I believe that many people, particularly the elderly are given too many medications. Catherine did not specify what kind of medication her mother refused to take. All I’m suggesting is that the most appropriate and responsible first step is to ensure that the medications are in fact warranted, useful and effective for that person’s situation. Psychotropic meds are not the only meds that are administered inappropriately. And many doctors overprescribe, so one has to go beyond checking with one physician. Based on my experience, I no longer trust what medical professionals say. I do my own research, ask lots of questions, get multiple opinions and then make decisions I think are the right way forward. No doubt you made the best possible decisions you could with respect to your mother’s care based on her situation and the information you had. There are some who might decide not to treat UTIs with antibiotics. I’m not sure where I would stand on that issue. In any case, I’m sorry your mom suffered like that at the end 😦
Lisa Feit said:
My dad and I spent 8 years caring for my mom before we lost her to this horrendous disease at age 69. We cared for her at home, then at an Assisted Living Facility then in a Nursing Home. All of these tips are SO helpful. Also realize that as a caregiver spouse or as a son or daughter, your needs are quite different. My dad had just my mom to take care of. I had him and my kids to worry about too. Seek out support online or with friends or professionally…you cannot go through the long goodbye or the aftermath alone.
US Against Alzheimers has been an amazing support for me and my family!!
My Dad has written and published 75 articles about Alzheimer’s caregiving. You might find his articles helpful.
And as my mom would say…celebrate the good…it is always there for you to find!!
So appreciate that your loved one can still be hugged and loved…even if they no longer know your name…I am gratefully for every day I had with my mom…even the bad ones…