The Information You Need To Know
Being the caregiver for your aging parents is complicated. It requires patience, compassion, planning, and tough love.
With our dad, it was a slow transition from having to step in to take care of his needs. It was sad to lose a piece of him each day. With our mom, the transition has not been as smooth. Requiring her to relinquish control has been met with hurt, anger, stress, frustration, and guilt. We are sharing the many lessons learned from caring for our aging parents.
The Sandwich Generation
Several years ago, I wrote about The Sandwich Generation. Since then, we find ourselves jumping from crisis to crisis. I am hardly alone when it comes to being a caregiver for our elderly parents. So many of my friends are being pushed to their limits. We all are facing unique complications.
A year ago, we celebrated our mom’s 90th birthday. She was healthy-ish and of sound mind. What a difference a year makes. We never thought she would make it to 91 after a fall and hip fracture several months ago. Ironically, she had a check-up five days before her fall. Her doctor congratulated her on becoming a nonagenarian. (someone who is in their 90’s). And, he added, “you have your wits about you, so you’ll probably live until 100.” Her response was an annoyed “That’s just great.” And, he said, “Just don’t fall and break your hip.” Of course, that’s exactly what happened. You could not make this up.
Statistically, we know the high mortality of hip fractures in elderly patients. She was in the hospital for over three weeks between surgery and rehab. And she’s not been the same since. She has begged us to let her go. As if by waving a magic wand, she will get her wish to be done. My three sisters and I want her to live in peace, even if that means her mortality because she does not want to be here. Some days are better than others, but it has been very tough for her for the past five years.
I know we are not alone in witnessing our parent’s diminishing health. We’ve been through this before, but the story was different. We watched our brilliant, kind, compassionate, gentle father disappear a little more each day from Lewy Body Dementia and Parkinson’s. With our mom, it is harder to watch her become more and more depressed.
My sisters and I have done everything within our power to make her life easier and more joyful. Fortunately, she stays home and has 24-7 care, some paid for with her long-term care policy. The alternative is an assisted living facility, which she will have nothing to do with.
She has her 94-year-old sister, the most positive, happy person, living around the corner. Our aunt has amazing energy. We attribute her health and happiness to her participation in life by calling friends, seeing family, and reading.
Our mom’s primary care physician suggested she speak with a psychologist about her depression, take anti-depression medication or move into an assisted living facility.
I addressed these solutions with our mom, who refuses to consider them. During a call with her doctor, he said, “Let her do what she wants. ” Actually, what he said was, “then let her do whatever the f*ck she wants.” And we agree… to some extent. Except she has fallen five times in the last eight years, all but one fall resulting in surgery and going from part-time home aides to 24/7 care. Ultimately, we are still left with the stress of picking up the pieces.
Let Her Be
But nowadays, we are often biting our tongues and letting her be. The truth is that many seniors closer to the end of life don’t want to do anything to help themselves. Intrinsically we have no issues with wanting her to live the remainder of her life on her own terms. The problem with that is when her safety is compromised. It impacts the entire family.
Some important context. We all adore our mom. She is among the strongest women we know; we are blessed to have her still around. Unfortunately, she is a huge fall risk due to her lifestyle, diet, and lack of exercise. We have begged her to use a walker for years to minimize her risk. The result of five falls and four surgeries has taken its toll. So we are not being callous when we say let her live life on her terms. I honestly can’t say I wouldn’t feel the same way she does. It is hard to imagine falling and breaking bones, having surgery, and months and months of physical therapy. Frankly, I’d be depressed too. Perhaps being of a different generation, I would be open to taking anti-depressants or talking to a therapist. Watching your body break down is depressing. I think she feels she is being punished. And that is the last thing we want her to feel.
I’ve Had A Good Life
My sisters and I hear this from our mom all of the time. She is vocal about being ready to move on after living a good life. She does not want to live the way her life is right now. I do get it. Between her injuries and the pandemic, her life is lonely and isolating, and she has a lot of physical limitations.
And we cannot will her to want to live. She has her mental abilities, minus short-term lapses, but nowadays, she rarely gets dressed, puts make-up on, calls friends, or goes out. She sits in a recliner all day, bored, depressed, and lonely. Part of this has to do with her need to use a walker at all times. She calls it her appendage and hates it. Says it makes her feel old. I have told her how lucky she is that for almost 91 years, she has not had to use a cane or walker. And there have been many other physical and mental changes, which she finds degrading and upsetting.
Plus, she knows the expense associated with her care. She told us that she and my dad worked hard to save money to leave us when they were gone. But the cost of around-the-clock care is eating much of that away. We don’t care, but there’s nothing we can tell her to convince her otherwise.
Paranoia and Delusion
Another trait that the elderly display is paranoia and delusion. For instance, our mom often verbalizes that people are stealing from her. My friends experience the same beliefs from their elderly parents.
The worst approach is invalidating their beliefs, often making them frustrated and agitated. I find myself making comments like, “I believe you believe they took (fill in the blank).” And even when I find the item(s), she claims were stolen, her retort is, “they brought it back.” The saddest aspect of this is they are not even valuable items.
That’s not to mention how it makes the aides feel. It is painful to watch a mom who taught us to treat everyone like we would want to be treated treat her aides rudely. This is not who my mom is. There have been many cringeworthy moments that are shocking. We know the aides, and they are doing their jobs. But because our mom resents them being there 24/7, she is combative. There is no easy solution.
Where’s the Manual?
Certainly, there are many books about caring for aging parents. They all offer sound advice, but until you are in this position, it’s hard to imagine our parents becoming not our parents.
I often advise my friends whose parents are still in their early eighties and starting to show signs of physical and mental impairments to start planning. The first step is talking with siblings and relatives to anticipate what future care they may need.
Anticipate Their Care Needs
One of my sisters is a CPA specializing in elderly financial planning. Another specializes in trusts and estates. A third is a nurse. And I am the one with the most flexibility when it comes to time. So we did everything we could to anticipate our parent’s needs as they aged. But nothing prepares you for crisis mode.
The time to discuss your parent’s future care is today. Legal documents must be signed, including POA and DNR (if their parent’s wishes about their health care have been verbalized), trusts, and wills. The DNR and copies of the Designation of Healthcare Surrogate should be posted on the refrigerator.
I recognize none of us want to have these discussions. We certainly planned ahead, yet it is extremely stressful with every crisis.
Who Will Address These Other Important Issues?
Other important issues that you will need to address include:
Driving – We knew my mom should not be driving anymore due to a vision health issue. This is by far one of the most difficult subjects to bring up. Many seniors associate driving with independence. Unfortunately, some will have repeated minor accidents or can no longer drive responsibly. When it came time for our mom to renew her driver’s license, our state required a vision test. Since I am the one who takes my mom for her eye exams, I knew there was no way she would pass the exam. Fortunately, she did not, and her license was confiscated. She was so upset and angry, but it made our job much easier.
Activities of Daily Living – They are more commonly known as ADLs and represent life taste and skills required to care for oneself independently. This includes hygiene (bathing, showering), dressing, mobility, and feeding themselves. Once they have trouble completing these skills independently, it may be time to change their care. There is a difference between ADLs and IADLs. IADLs include the activities they do for themselves in their home, including cleaning, housekeeping, laundry, managing money and medications, meal preparation, grocery shopping, transportation, and being able to use a telephone or computer.
Start With These Questions
- Do you know what your parent’s wishes are if they are unable to make medical decisions?
- Where are important documents, such as long-term care policies, insurance, wills, or financial statements, located?
- Do you have the authority to take over their finances if they can no longer manage money?
What Are Their Care Needs
With my dad, we eventually had aides around the clock. Each time my mom has fallen, it has required additional care. I am here to tell you that even when prepared, it is overwhelming. Whether a sudden health crisis like my mom’s or a progressive illness like Alzheimer’s, Dementia, it often means escalating care.
If you are fortunate that your parents have a long-term care policy, there is still an elimination period. And the cost of home health aides continues to increase. Do your parents have the financial ability to cover those expenses, often thousands of dollars per week? One family member may be in a better financial position to assist, and another may be able to give more of their time.
We have moved in and out of full-time care with each of our mom’s falls. Once she completed therapy, we respected her wanting to cut back on care provided she wear a med alert when by herself. The issue with the med alert is that our mom will not press the button when she falls. She reasons that the EMS workers will break her front door. I know it is hard to fathom that is her concern. She dragged herself across the house to call my sister or me before calling 911. Even after we explain that there is a key in a safe buried outside that only EMS workers is given access to. Nope, she would rather wait until we get to her house, which is at least 30 minutes away.
Communication with your siblings is critical. Without discussing who is in charge of what, resentments may occur. Caring for an elderly parent will change the family dynamics. When I would always see my sisters when they were down visiting, now many of their visits are to cover for us when we go on vacation.
Put On Your Oxygen Mask
The most important lesson we have learned is that in order to support our mom and be there for her, we have to start with ourselves. Watching our parents get closer to life’s end is emotional enough. It is hard to see our mom’s sadness even though she has a supportive, loving family. I know I have done everything I can to help her. Still, some days, I cannot continually watch a person who has always cared and preached about personal hygiene and looking their best, not get dressed or even attempt to look their best. Nor is listening to negativity, false accusations, and rude treatment of her wonderful aides. When that does happen, I give her a big hug and kiss, tell her I love her, and then go home to practice some meditation, exercise, and breathwork.
At the end of the day, taking care of your elderly parents is difficult and challenging. It truly takes a village.
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