In 2013 the first edition of What to Do about Mama? was published by Sunbury Press. My idea to write a book about caregiving was initiated by my experience as a caregiver for my mother-in-law. After my caregiving role ended, I remember thinking, “I could write a book!” I think many of us have a thought like that one time or another. But in this case, I did—along with my co-author and some three dozen other caregivers. In all honesty, my thought was that others might benefit from the real-life information we had to share.
And maybe it has. My daughter-in-law was pleased to tell me that her aunt is reading the book (the second edition published in 2019), “loves it,” and “wishes she had read it before she was a caregiver.” That is a typical response to caregiving books. Why? Because most people avoid thinking or talking about caregiving as a means of denying the day will come. I will think about it “when I need it” becomes “dealing with it in the crisis moment.”
This is a topic I have addressed—a lot—along with some other What to Do about Mama? ‘s main themes, such as family relationships and shared responsibility; the emotional impact of caregiving; and avoiding the burden of caregiving by planning and preparing ahead. (Check out the Index of Blog Posts on the menu bar.)
Caregiving had a profound influence on my life. It impacted my health, my relationships, and my outlook on the future. If you subdivide the population into young, middle-aged, and old, my peers—family, friends, neighbors, and acquaintances—fall into the latter group, whether admitted or not. Sure, there are many subgroups based on attitudes and physical condition, but still, we fall into the category of “old.”
- I say this because reports of illness and death are more frequent.
- I say this because I know that no matter how much effort we make to stay young, fit, and sound, we cannot change the inevitable.
- I say this because of the number of times I look at my peers and feel the urge to shout, “Watch out!” as if they are ready to step in front of an oncoming unseen car. Even those who are health care professionals and social workers. Because avoidance and denial are common to all of us.
By now you may be wondering why I have chosen to write about this topic. It is because I want to tell you that I am initiating a moratorium from this What to Do about Mama? WordPress blog, as well as the on the monthly What to Do about Mama? newsletter.
My husband, who worked in the steel industry for 48 years, retired in September. Although I love to write, it is, for me, a painstakingly slow process keeping me at the computer for many hours. That was fine when he was working, and even better during COVID’s pre-vaccination days. But now, I need to free myself from the tether. I’m leaving my options open so that I will have the ability to communicate via these channels again when so moved to do so. But it certainly won’t be on a regular basis.
There are still a couple of initiatives in the works. One is a What to Do about Mama? audiobook. The other is a collaborative book project I have been working on for the past five years with a former student. Although it was initially accepted for publishing, there are legal ramifications that need to be worked out that put that eventuality into question. Although not a book about caregiving, I will let my followers know if the project comes to fruition.
Guest Post by Michael Longsdon email@example.com
The death of your beloved spouse can shatter your entire world. There will be undeniable grief and sorrow as you mourn the love of your life. You might even begin to wonder how you’ll go on without them. For seniors who have possibly shared so many decades of their life with their significant other, it can be particularly difficult to move forward.
It’s important to realize that you are not alone. An estimated 800,000 people are widowed each year in the United States alone. Regardless of what some well-meaning people might tell you, there is not a “right” or “wrong” way to deal with the death of your beloved spouse. There is no specific amount of time you “should” take to grieve. The process is different for everyone.
Luckily, there are some time-tested words of wisdom that can help you cope in the weeks, months and years that follow the loss of your loved one:
First and foremost, give yourself time to grieve. During this process, you will undoubtedly need some support. Even for those with a solid support system and strong resilience, there is an unbelievable amount of grief that occurs when we lose our lifelong partner.
There will be some immediate needs that you will need to take care of, such as funeral planning and managing your household’s finances. It is common to feel overwhelmed by these sudden tasks – especially if your spouse typically handled most of the finances. Again, give yourself permission to reach out for help if you need it. Chances are, there might be a loving family member or a trusted friend who is willing to take on a few extra responsibilities to support you in this process.
Many people decide to move after the death of a spouse. This should not be a decision that is taken lightly, but instead should be made only after you’ve taken some time to really consider what is best for you. If you do eventually decide to move, you will want to properly handle and preserve any family heirlooms as items are either packed away into storage or donated. Not only do you want to protect the item, you also don’t want anything to get damaged in the process.
Regardless of whether or not you decide to move, you might also want to consider turning one of your beloved heirlooms into a memento. Choose an item that has special meaning to both yourself and your spouse, possibly something that reminds you of a happy memory or a certain aspect of his or her personality. Consider keeping the item and turning it into a keepsake that you can cherish for years to come.
As you work through your grief, you may look for other significant ways to remember your spouse. One excellent way to memorialize your loved one while also helping others is to start a nonprofit. As doing so can be complicated for those who aren’t familiar with the process, ZenBusiness offers step-by-step guidance on how to form your nonprofit. Especially if your loved one passed as a result of a specific medical condition or if there was a cause they were particularly involved in during their lifetime, a nonprofit can be a great way to raise awareness and funds while helping others in the process.
You don’t ever really get over the death of a spouse. But with patience and time, you will eventually get through it. Although the person you loved might be gone from this world in a physical form, they will always live on in your heart – and in your memories of your good times together.
Caregiving. It is not something that people want to talk about, or even to think about. Let’s face it. In many ways, caregiving is a bummer. Why? Because it is all about loss: loss of physical and cognitive abilities; loss of independence; and ultimately, the loss of life. But all of that loss is not exclusive to the care receiver. Caregivers experience a loss of their lives—not by dying—but by losing the freedoms of their lives as they lived it previous to caregiving.
In my condominium community, a number of our elderly residents have recently sold their homes and moved to senior care facilities. Not because they wanted to, but because they were pressured by their children to do so. We neighbors were surprised to see one gentleman’s obituary in the paper a matter of only a few weeks later.
I am not quick to blame the children, who were doing what they thought best to assure the safety of their parents who’s independent living had become basically unacceptable. But did it have to be this way? No. The parents could have remained in the driver’s seat of their lives if they had been proactive and planned ahead in preparing for their future needs.
Why does it take a crisis moment to move folks into action? It’s because people are in a vicious cycle of procrastination and denial. Caregiving education is something that is often ignored because: pre-caregivers think they don’t need it yet; current caregivers who feel they are too busy; and post-caregivers just want to leave it all behind. I’ve even known caregiving “experts”, who should know better, to fall prey to procrastination. Sometimes they, too, wait for the crisis moment before springing into action.
So, if you want to call your own shots, be proactive—plan and prepare ahead. I have, and this is what I have accomplished:
- Downsized my home
- Downsized and organized my belongings (It was like pulling teeth, but I even got the kids to express what they would one day like.)
- Made a notebook of the information they would one day need to lay their hands on easily: financial, legal, property maintenance, and medical
- Completed a conversation starter kit “The Conversation Project” so that the children would have a clear picture of what my wishes are for end-of-life care.
It is my plan to stay in my home and age in place with in-home care. My daughter lives nearby, but if my needs are great there’s an agency called Elder’s Choice that provides a live-in caregiver 24/7 and that is the model I would prefer. But there are many other choices available, too—it’s a matter of being flexible (not stubborn) and developing a care plan that works for you and your family—one that does not leave your children with excessive burden for your care.
So, educate yourself early on. The following article takes a succinct look at the following elder care options: Aging in Place; New Home; In-home Care; Living with Family; Independent Living Community; Assisted Living Facility; Continuing Care Retirement Community; Skilled Nursing Facilities; and Care Homes.
July 18, 2021
Elder Care Options: Which Is Best For Your Loved One?
To listen to the podcast, click on the the following link:
Guide to Caring for a Loved One with Alzheimer’s by Sharon Wagner firstname.lastname@example.org
Alzheimer’s is a devastating diagnosis that millions of families cope with every year. If you have a loved one with this illness, this guide from What To Do About Mama? will offer you some support.
What is Alzheimer’s Disease?
Alzheimer’s disease is a progressive brain disorder that makes up about 60% to 70% of the cases of senile dementia. Alzheimer’s disease affects about 6.2 million Americans aged 65 and older. It can be your grandparent, your cousin, your sibling or even your parent who faces the diagnosis. Eventually, those with Alzheimer’s require around-the-clock care, and for many families, that means taking the loved one into their own home.
Signs of Alzheimer’s disease vary depending on which stage the person is in. As a degenerative brain disorder, symptoms become more severe with time. Here, we’ve separated the stages into three basic tiers: mild, moderate, and severe Alzheimer’s disease.
- With mild Alzheimer’s disease, a person may seem healthy but they begin to show signs of the disorder. Mild Alzheimer’s is characterized by memory loss, poor judgment, consistently getting lost, taking longer to do simple tasks, needing things repeated, losing things, mood disorders, and aggression.
- As the disorder progresses it becomes moderate Alzheimer’s disease. Signs of this stage include increased memory loss and confusion, cognitive difficulties, disorganized thoughts, difficulty coping with things that are new, hallucinations, paranoia, impulsiveness, restlessness, and increased anxiety and aggression. During this stage, the Alzheimer’s patient needs more intensive supervision and care from those around them, but they can typically stay in their homes.
- Severe Alzheimer’s disease makes a person completely dependent on others. They need supervision around the clock and access to emergency medical care. Symptoms include a complete loss of communication ability, seizures, skin infections, loss of bowel and bladder control, trouble swallowing, increased sleeping, weight loss, and grunting.
Caregiving for a Person with Alzheimer’s
As Alzheimer’s disease progresses, the patient requires supervision and assistance for their safety and wellbeing. In the illness’s latest stage, this often means moving the loved one into a skilled nursing facility with a staff that can provide the care they need 24 hours a day. Unfortunately, this care doesn’t come cheaply, with a current average cost of over $7,700 each month. To help cover this expense, many families sell a senior’s home and put the proceeds toward their care. You can get an idea of what your loved one’s home will sell for by looking at its sale price, the size of the mortgage on it, and the taxes and fees for its sale so you can budget for care accordingly.
There is some good news: while those in the severe stage of Alzheimer’s may need to be admitted to an assisted living facility, typically those in the earlier stages can continue living at home as long as a family member or loved one can provide support. There are an estimated 16 million American adults who act as family caregivers for someone with Alzheimer’s disease or other dementia every year. If you find yourself in the position of being one of these millions, it’s important to prepare the home you share for their safety as the disease worsens.
- As mobility becomes an issue, handling steps and stairs becomes more and more difficult for the Alzheimer’s patient. Be sure to keep all their necessities on the first floor and cover inclines with a safety ramp they can safely navigate.
- The bathroom is the most dangerous room in the house. Place toiletries and things they will need in immediate reach, and make sure they’re clearly labeled. Put locks on cabinets and drawers that hold hazardous items like cleaning products or razors. Install grab bars next to the toilet and tub, and consider installing a shower bench to make bathing easier.
- The Alzheimer’s patient needs their own space where they can seek privacy and rest. Set up a comfortable room, preferably with direct access to a private bathroom. Place things they like in the room whether it be photos of loved ones, safe crafts to do, or a television. Remove possibly harmful decor and items, especially things that can shatter if broken. Avoid low furniture they can trip over such as coffee tables and ottomans.
Alzheimer’s is a degenerative brain disorder that affects millions of seniors. As the disease worsens, patients need constant supervision for their wellbeing. While severe Alzheimer’s may necessitate an assisted living facility, during the earlier stages people can generally stay in the comfort of their home with the help of a caregiver. Caregivers provide supervision, security, and emotional support during this difficult time.
Has COVID-19 had an impact on your sense of purpose? In her March 15, 2021, article A Reason To Get Out Of Bed, Barbara Karnes discusses this issue in terms of how purpose impacts end-of-life.
Barbara reports that when she awoke the other morning, she began to think: Why not just stay in bed all day? Why do I NEED to get out of bed? What do I NEED to do? It was then that she realized that because of COVID, her sense of purpose had vastly diminished. Something that Barbara already knew, something she had learned through her profession, was that having purpose is needed to move forward into living.
This, too, is my experience. When the time came that my mother-in-law could no longer live alone and the choice was made for her to move into our home, she was in very poor condition due to advanced COPD, falls and fractures, as well as a number of other serious disorders. We didn’t expect her to live much beyond two more years.
What we hadn’t considered was the strong sense of purpose that still burned within her. She got up each morning insisting to get dressed first thing. She set goals—one of which we helped her meet—which was to see her last grandchild graduate from college. (This meant procuring a special oxygen system to enable her to flying to Colorado for graduation.)
The woman not only had goals, she verbalized them vociferously.
“My goal is to live to one hundred.” “It’s all in your attitude.” “I don’t want to miss anything. “I just keep plodding along.”What to Do about Mama? pp. 30-31
In my book, “What to Do about Mama?” others reported similar stories about the longevity of seniors living life with a purpose.
I recall an assessment I administered with a woman well over ninety. She said that her son was a widower and remarked that I reminded her of her deceased daughter-in-law. Later in the assessment, she asked me, “Are you married?” Afterward, when I was walking to my car, I burst out laughing when it suddenly dawned on me that she was exploring my status of availability for her son. I think it was important for her to know he was taken care of before she was ready to depart this earth.
And here is another reason one senior is motivated, just like the Energizer Bunny, to keep going and going and going . . . Her mother hadn’t “planned” to live past eighty-five. But once Patricia’s siblings began to compile a family history, she expressed the desire to see the work completed. It gave her satisfaction that her children, who hadn’t always gotten along, were cooperating on the project.
Peter told us that because the Germans had shot at him with “88s” during the war, it was his goal to live to be eighty-eight years old. He and one other man in his platoon had been the only two that were not wounded or killed by the German artillery.What to Do about Mama? pp. 227, 306
In her article: Barbara Karnes concludes that “The year of 2020 changed everyone’s sense of purpose, made everyone question their reason for getting out of bed each morning. The pandemic did end a way of life we were living. It stopped our routines, our habits of daily living and forced us to reexamine how we are living our lives, what is important to us, how do we just survive.”
So true. I find that I am filling my days with “busy-ness”—various projects, some that I like, some not so much so. Why?
Unlike some people, such as the healthcare workers who are pushing their purpose to the limits, there are others who have been stopped in their tracks—forced to shelter, to disconnect, to stop what we were doing. We ask ourselves, “Why am I doing this?” But as Barbara Karnes suggests, maybe it would be preferable to rethink our question and ask, “What can I do while this is happening.” In that way, we may be able to better-establish our sense of purpose and our reason to get out of bed in the morning.
Don’t ask: Why am I doing this?
Do ask: What can I do when this is happening?
Jigsaw Puzzles. Not everyone enjoys them—but I do. I especially love doing puzzles with my grandchildren. “Puzzling” was a frequent activity when they were young–the times before they got too scheduled to while away the hours with Grandma, and before I was in competition with screen time.
Puzzles provided a chance for the kids to focus quietly. I could observe the working of their minds–how they use their understanding of the pictures to place their pieces into the puzzle. It was an opportunity to engage them in thoughtful conversation. Initially they worked by trial and error, but as they matured they used color, shape and those clues from the picture to put the parts into the whole. But still, they manifested their mischievousness when they squirreled away a piece so they could be the one who “finished” the puzzle—always the one that I was specifically looking for, I might add.
During a visit with my brother in 2018, we went to the movies to see The Puzzle. When Agnes asked Robert, her newfound competitive-puzzler-partner, what he loved about doing puzzles he replied: “Life is messy, there’s nothing we can do to control anything. When you complete a puzzle, you know that you have made all the right choices.” Oh yes, I thought, now I get it.
So my interest was piqued when The Caregiver Space featured a recent article entitled “On the consolatory pleasure of jigsaws when the world is in bits,” by Melanie McGrath, which appeared the January 20, 2021, Psyche Newsletter.
When the call came to say my mother had died, I was working on a jigsaw of Joan Miró’s painting The Tilled Field (1923-24). Like many others, I turned to jigsaws at the start of the pandemic as a way to manage stress, and symbolically reimpose order on a chaotic world. We take our consolations where we can and, as I continued with the puzzle in the days after mum’s death, its tactile qualities, the spicy smell of ink and card, and the small satisfactions of placing each piece where it belonged, grounded me when the world was in bits – both outside and within.
Since her diagnosis of dementia 15 years ago, my mother, too, had been disintegrating, as it were, piece by piece. At each of my fortnightly visits, some further part of her seemed to have newly dropped away, leaving gaps so raw and cruel that I sometimes had to remind myself to focus on what remained. COVID-19 put a stop to my visiting the nursing home where she spent the final decade of her life. We tried FaceTime ‘get togethers’ but my mother was blind as well as in late-stage dementia, so these felt like one-way affairs – mum’s eyes half-closed, her face unresponsive, her body giving every impression of lifelessness. At the time of her death, I hadn’t seen her for four months, and her image had begun to fade in my mind.“On the consolatory pleasure of jigsaws when the world is in bits” by Melanie McGrath
The day after we saw the movie, I got out a jigsaw puzzle to do with my brother. (Evidence suggests that jigsaws help older people retain visuospatial memory.) However, this experience made evident how my brother’s brilliant mind was beginning to yield to the effects of his recently diagnosed dementia.
Since COVID-19 I have been unable to do puzzles with my grandchildren or to visit my brother–at least not for the time being. As I sit at the dining room table doing a COVID Puzzle, like Melanie McGrath I think,