I worked in healthcare for 25 years and spent nearly 8 years as my mother's caregiver. I hope to share tips that can help others.
Help for Aging Parents and Caregivers
Millions of adults find themselves in the role of caring for elderly parents. Often, this is in addition to either caring for their own children or attending to some of their own emerging health issues as they age. It can be a time of struggle, but of course, it's also a labor of love.
It's seldom that families have formal training or study that prepares them for this task. In fact, few of us have role models for adult caregiving or eldercare either. Luckily, there are some resources out there, including support, services, and products, that can help.
I wrote this article from a purely personal perspective, to share some ideas and resources that might help others dealing with an elderly or ill parent. My experience isn't unique, but it's also not all-encompassing, so please feel free to share in the comments: it will help others who are facing the challenges of caring for aging parents.
A Bit of Background About My Elder Care Experience
I got my Master's Degree in Speech Language Pathology and Audiology many years ago. I spent most of my career working with individuals after traumatic brain injuries such as car accidents and strokes. Eventually, I directed multiple rehabilitation teams of therapists, psychologists, case workers, and so forth. With all of this, I do have a bit of a background in working with both young adults and aging individuals in both healthcare facilities and their own homes.
My siblings and I have dealt with our parents' health issues for quite some time. More than 13 years ago, my father was diagnosed with acute lymphocytic leukemia, and a year or two later with Parkinson's disease. My mother was his primary caregiver, which took its toll on her. We were there to provide assistance as needed.
After my father's death, my mother found herself alone, depressed, and gradually losing her health and independence due to osteoporosis, depression, poor balance, and malnutrition. She is now 83 years old and clinging to living on her own with our assistance.
About Medical Appointments
In Some Instances, You Really Need to Be There
Following my father's diagnosis of leukemia, I quickly found that it was beneficial for me or one of my siblings to attend appointments with my parents. When my mother began living alone years later, I found this to be an absolute necessity. First, there was the emotional stress of the situation and my parents benefited from the help. Also, as a caregiver, I was able to assist in:
- Formulating questions to ask.
- Reporting issues completely to the physician.
- Recalling the detailed information provided by healthcare providers.
In some instances, elderly parents aren't accustomed to taking an active role in directing their care. This obviously isn't true in all cases, but some fail to realize that there is information they need to relate as a patient.
The doctor would usually ask my parents "How are things going?" A typical response was either "Not worth a damn" in my father's case or "Pretty good" in my mother's. These responses were as much detail as you would get without a great deal of prompting. And physicians, being busy people, don't always probe.
In my parents' case, I often knew the real story. For instance, I knew my father was only consuming a few hundred calories of food a day, or later, that my mother's balance had become a problem, resulting in many near-falls. However, without someone else there, these things might not have been reported.
I also found that being involved in medical appointments could bolster my caregiving efforts in other ways.
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- It allowed me to help in finding a physician who would communicate best with me and my parents.
- It allowed me to establish a relationship with the physician and other practitioners to gain their assistance in improving my parents' follow-through at home.
- It allowed me to establish the kind of relationship that assured good communication even when we weren't in the office.
Clearly, it's important to be sure the physician selected is someone with whom your parents are comfortable, and who can work with your loved ones in a caring and competent manner. In addition, if a caregiver is often present, they establish themselves as someone with whom the physician and nurses know they need to communicate.
Despite my career in working with adults with disabilities, my parents often didn't follow my advice. Not uncommon. I found it best to enlist the help of the physician whenever possible in convincing my parents to take certain actions, such as agreeing to take a nutritional supplement or learning some exercises to do at home. Hearing such things from a professional, rather than a bossy child, is always best! Because I had an established relationship with the physician, it was easy to talk to him and gain his support prior to the next office visit.
Special Attention to Medications and Compliance May Be Needed
For many elderly individuals, medications can increase in number very quickly and become overwhelming to manage. There are a number of things that need to be considered when dealing with this:
- Ideally, working with a physician who has a specialty in geriatrics is critical for the special needs of older patients, who may have a myriad of health issues and a large number of medications.
- Remember that some medications interact with other medications. Furthermore, an elderly patient may have side effects that a younger, more vital person may not.
- Recognize that a medication may work well and then over time exceed the therapeutic level and become a problem.
- Keep a written list of all current medications and their dosages. Many of the specialists you see will have access to an electronic medical record that should be up-to-date and accurate. But don't depend on that. All care providers need to know this information.
My father's experience with an anti-depressant is an illustration of how medications can go wrong. He went through a period of confusion, which was accompanied by hallucinations and bizarre, even borderline violent, behavior. In the end, it was determined that his medications, all of which he had been on for quite some time, had created the problem. After a period of withdrawing from some of them, he returned to normal.
Depression is not an area of expertise for me, but I know that it's not uncommon among the elderly in general. Certainly, when family and friends are distant, and illness and disability are pressing in, depression can be understandable. Undoubtedly, anti-depressants can help some people. I know my father took them for some time and they seemed to help, but such things need to be monitored carefully, particularly in older people who are often on multiple medications.
Another concern about medications is how reliably an elderly parent can stick to a schedule. This can be difficult even in the absence of any decline in memory. Maintaining a therapeutic level is often critical. Too much may be detrimental or even toxic, but too little renders a medication ineffective.
Find ways to ensure that medications are taken on time, every time. There are a wide variety of pill dispensers available to help with this task. Some organize pills by day and time, and some will even provide auditory reminders. There are also systems now that will phone or message the caregiver if medications aren't taken. Even if an elderly loved one is independent and able to manage the medications, be sure they have their medications in a bottle that they're able to easily open.
Due to the number of medications, some older people will simply opt to stop taking certain drugs. I've seen my mother, my mother-in-law, and others choose to do this. It can be wise in these situations to investigate the possibility of taking some medications via other routes when possible. For instance, my mother switched to a nasal inhaler for one of her pain medications, a once-a-month injection for one of her nutritional supplements, and a once-a-year IV treatment (versus a weekly pill) for her osteoporosis. This has helped to reduce the number of pills she has to ingest or remember to take on a daily basis. Obviously, these are things only the physician can determine.
About Mobility, Strength, Endurance, and Balance
Physical Abilities Can Often Be Improved
Ideally, attention to fitness at an earlier age can help a great deal in our later years. How well our bones develop as youngsters and how consistently we maintain fitness in early years follow us into old age. In addition, it seems that when a person accepts that their physical condition and health are at least somewhat in their hands, then they're more likely to comply with needed activities when they age. I've attended a number of lectures by gerontologists which have indicated that how we age is due only in part to genetics and that, indeed, we do have much more control over how we age and the quality of our life than many people seem to believe.
Even in the elderly, however, it's possible to improve fitness levels, strength, balance, and endurance in many instances. However, it's important to be evaluated by a physician first before any new activity or exercise program is begun.
- A physician can order therapy or an activity program based on what they find.
- For those still in good condition and not in need of rehabilitation, there are a number of publications that can guide them through exercises to enhance their physical well-being.
- If an elder has been inactive for a significant period of time and is temporarily debilitated, many rehab centers accept patients into their facilities for short periods of time to get them started and back on their feet.
- Another option is home care. A physical therapist can evaluate and treat or instruct a patient in effective home exercise.
- Outpatient therapy is appropriate for those who don't need nursing care and are able to go into the clinic to use the equipment available there. In this instance, once they are discharged from treatment, exercises can be continued at home.
- Many extended care and rehab facilities across the country also offer general geriatric exercise programs to the public. These often only cost $5-$20 a week, and they allow elders to be evaluated once and then to use the facilities as desired, much like a health club.
Of course, some elders are more fit. I also know an older woman who greatly increased her physical activity when she was given a dog. She hadn't had a pet in a number of years, but had always loved them. Once she had the dog, she was committed to walking it daily, which is far more than she was doing prior to its arrival. It improved her physical condition and alleviated some of her social isolation as well. Obviously, this would work only if the person was capable of caring for the animal and enjoyed having it.
About Assistive Devices and Adaptive Aides
Caring for Parents May Require an Evaluation of Their Environment
A professional can evaluate an older person's residence and recommend modifications that allow the person to live in their own home for as long as possible. Again, a physician can order such an evaluation.
If you're caring for parents who have a less-urgent need, you can also keep an eye out for which activities seem to present problems. One common problem area is the bathtub. There are several options to make bathing more accessible:
- Installing sturdy grab bars is often a first step in assuring that falls don't occur and no one gets stuck in the tub.
- Another option is the use of a tub bench, which allows the user to bathe without lowering themselves all the way into the tub.
- A handheld shower nozzle can also offer a solution and makes showering easier than using a tub.
- A walk-in shower (with no tub) is also useful, as it generally eliminates the need to step up into the tub. Many of these have seats built-in, but shower chairs are also available. Of course, grab bars in the shower and non-slip mats are important too. Remember that towel racks don't double as grab bars, as they're generally not mounted to hold a person's weight.
Of course, there are a number of other common issues encountered in the home:
- It's often prudent to remove any rugs whose edge might catch a toe and cause tripping.
- Any carpeting should be secured, using a seam sealer or something similar.
- All walkways should be cleared, with furniture and other items moved out of the pathway.
- Chairs should resist tipping and have arms to assist in both rising and sitting down. Rockers and swivel chairs should be avoided.
- Getting up from a toilet can also be difficult, and raised toilet seats with arms are often used to assist when necessary.
- Faucets may need extended arms if there is difficulty reaching them or operating them.
- Blinds and other items might also benefit from longer handles or controls.
- Reachers are available to help reach for items dropped or those overhead.
- In many instances, items like laundry detergent should be purchased in small quantities or transferred into smaller, lighter containers so that they can be easily handled.
- Keeping frequently used items at waist level can help to avoid stooping or climbing up to reach when balance is poor or mobility is restricted.
- Beds can be lowered, or an assistive grab bar added, to provide stability when getting in and out of bed.
- Convenience items like jar openers should be considered. They are useful and easy to find.
- Certainly, a single-story home offers advantages, but if moving isn't an option, assuring that all needed items are moved to the main level is an alternative.
An occupational therapist can also identify ways to assist an elderly individual in continuing in bathing, dressing, and other forms of self-care. There are a number of assistive devices to help with putting on socks, buttoning shirts, tying shoes, and more. Clothing with elastic versus zippers, velcro or snaps versus buttons, and pull-on tops are always easier.
I've found that when caring for parents, you need to question and observe rather than waiting for them to announce a problem or difficulty. Nothing substitutes for spending extended time with them to see how they function and how they handle various situations. Home medical-alert systems can also provide peace of mind for elderly individuals who live alone. These systems give your loved one quick access to emergency help at the press of a button and are affordable on most budgets. Some systems can even detect a fall and call for help, even if the individual can't initiate a request.
About Depression and Social Isolation
It Isn't Just About the Physical Needs
I've observed that there's a vicious cycle between problems with the emotional well-being of my parents and problems with their physical health. It's often difficult to tell which is the cause and which is the effect. As I noted above, medications may help with issues such as depression, but this has to be closely monitored.
- I would suggest that increasing social contact is a critical component of caring for parents. For the elderly who are able and interested, activities such as volunteering or social groups of interest are important. Increased contact with family has been paramount for my mother: regular phone calls, e-mails, visits, short trips with us, and so forth. I also think it's important to plan things with an aging parent, giving them things to look forward to doing. Planning little excursions, get-togethers, meals, and activities, if they don't do this themselves, can be a great help to a loved one. Getting out will not only lift the spirits, but also provide physical activity and mental stimulation.
- In some instances, it's also necessary to stimulate previous interests if lethargy has set in. As an example, after my father's death, I spent a fair amount of time getting my mother engaged in decorating her home, something which she had previously enjoyed doing but was no longer initiating. I've also worked to re-ignite her love of puzzles, solitaire, and reading mysteries, which, although they aren't socially engaging, helped to keep her mind busy and entertained.
- Being able to take the time to listen and reminisce with them is important. Anyone caring for parents learns quickly that stories from the past crop up frequently. This isn't necessarily a sign of encroaching dementia, in my experience. Recalling stories about loved ones, important events in their lives, and so forth is normal. The time you take to sit down and really talk is also when you're likely to hear about any problems they may be encountering. They might not announce a near-fall when you call them up, but if you sit down face-to-face and chat for an hour or more, it often comes up casually.
- In some instances, a move can also be beneficial if an older adult is isolated from family and friends. There are trade-offs to consider, however. For some, changing their environment can be almost debilitating. Changing doctors and dealing with unfamiliar surroundings can sometimes force a less-than-confident senior into staying home even more. On the other hand, if the move is toward family who will be present much more frequently, or into a community of other supportive elders, then perhaps the move is worth it.
If a senior chooses to stay on their own, it's necessary to monitor how they're doing. There are links below to assist in finding transportation assistance if needed. Meals can be delivered if necessary and personal assistants can be hired to help with chores and to provide some socialization. There are even case managers who can help with planning and identifying needed services. An appropriate pet can also alleviate some of the sense of isolation, as mentioned above. But again, they have to be desired and not create an excessive burden. Senior Day Care Centers are also an option to provide social interaction, stimulation, and relief for any full-time caregivers.
Are They Getting Enough of the Right Things?
No elder-care program would be complete without considering nutrition. This has been a huge issue with my mother. At one point, her weight plummeted to 75 pounds. Pain, medications, depression, inactivity and some of the natural changes due to aging all seemed to be contributing factors. She became malnourished and lost a great deal of hair. There are a number of reasons why this can happen:
- Eating is often a social event and eating alone assures less of an appetite, so eating with them, when possible, is important.
- Some seniors have difficulty cooking for themselves.
- Others lose their appetite as activity declines, tastes change, or they simply are less stimulated by eating the same foods day after day.
- Some have lost weight and dentures no longer fit well, making many foods hard to eat.
- With the reduced intake, there is also the issue of eating well-balanced meals.
My mother tended to miss out on protein, further escalating her loss of muscle. Certainly, there are nutritional supplements such as Ensure and Boost that are beneficial, but in my mother's case, we also had to go the route of monthly B12 shots to give her what she needed. Getting blood work done is necessary to identify such deficiencies. She has since regained most of her lost weight, hovering at her typical 90 pounds, and her hair is filling back in after a year or more. Some things to consider:
- Regular weight checks are useful, but so is simply checking to be sure the pantry is full. I began grocery shopping with my mother so that I could monitor the fact that she was routinely getting food.
- Of course, the other factor is their ability to cook safely. One critical risk is the use of the stove of course. Observing them prepare a meal will help you see how capable they are and whether or not they remember to turn the stove off. Again, an evaluation by an occupational therapist can reveal how well an aging parent can prepare meals, do laundry, and other similar tasks.
- Of course, family can prepare meals and freeze them to help out, or delivery can be arranged. Meals on Wheels can help locate a local service, but many cities also have groups of restaurants or food delivery services, such as Schwan's, that will deliver for those who have more money to spend.
- Physicians can prescribe appetite stimulants if necessary and examine any digestive issues.
- Swallowing problems can also occur due to decreased sensation or a reduction in muscular control. If a senior coughs during meals, complains of food sticking in their throat, or has problems chewing and clearing food from their mouth, an evaluation is needed. Another potential sign of swallowing issues is pneumonia, which can be the result of aspiration in some cases.
- Hydration is also critical for good health, so don't overlook this either.
About Mental Stimulation
Keeping Them Engaged Can Be Critical
Staying mentally sharp is obviously a critical and important consideration. Humans are complex, and that seems to be increasingly evident as we age. Decreased physical activity, social isolation, depression, and poor nutrition have all been tied to cognitive decline in the elderly in various studies. Problems with medications can also present themselves as mental decline.
- Encouraging active participation in leisure interests, reading the paper, and other activities that stimulate the mind is good. Some advocate brain games, puzzles, and similar activities to prevent mental degeneration.
- If you're caring for parents who have limitations, it's easy to get in the habit of doing everything for them. This promotes their dependence. Therefore, I do recommend trying to encourage them to do what they can for themselves and to think for themselves. For instance, if I suggest to my mother that we drive to a neighboring town to have lunch, I may get out the map and ask her to try to navigate. Although I grocery shop with her, I ask her to make the list. Some things go more smoothly when I tell her I need help with something: this often motivates her to try something more challenging. I don't know any adult who wants to be treated like a child, and certainly, most people want to be useful. Allowing even a frail, elderly individual the chance to control things and to contribute is important.
- If a decline is noticed, an assessment, perhaps neuropsychological, may be needed. Again, other issues may be causing the symptoms, and might be remedied with treatment.
- Anyone with significant cognitive impairment should not be living alone. But for those with less difficulty or who have a live-in partner/caretaker, common sense indicates that auditory alerts to remind them to do things, such as taking medications, and written labels to help them find things around the house can be beneficial in any environment.
About Caring for Parents Who Need More Assistance
At some point, elder care may begin to involve more outside professionals as the person requires more assistance. As I mentioned earlier, you can:
- Hire assistance in the form of case managers to identify needs and coordinate services.
- Hire personal assistants to assist with chores, errands, and companionship.
- Hire Home Health Aides to provide baths and personal care, or even home nursing care and therapies.
- Sign up for telemetry-type services to provide in-home monitoring of activity levels, compliance with medication administration, weight, dietary intake, and so forth.
- Ensure that an elderly loved one always has access to help when needed. Although the ads for panic buttons and similar devices have been ridiculed for many years, such products do provide a needed service. A good alert system can provide the assistance necessary if a fall happens and getting to a phone isn't possible. For those who are out and about, senior-friendly cell phones or mobile personal-help buttons can be a solution.
Sometimes, of course, leaving an aging parent on their own is no longer an option. Some caregivers are able to continue caring for parents in their own home, but for others, assisted living is a better option, since transportation, basic medical services, meals, and more are available. When physical needs or cognitive decline are too great, skilled nursing facilities are necessary to provide the 24-hour supervision and nursing care that's needed.
The Resource Directory for Older People is a free book published by the US Department of Health and Human Services. It provides a directory to hundreds of services of interest. They can be contacted at (301) 496-1752.
Some Useful Websites Regarding Elder Care
- Eldercare Locator
A nationwide directory to assist in finding some services and resources for elder care in your local area.
- Food and Nutrition Information Center
Find general information regarding nutrition.
A site filled with brief articles of interest to the elderly. Topics range from insurance, health topics, and Medicare to HMO's, elder law, and end-of-life.
- Geriatric Care Managers
You can find a professional to help you in planning care for your aging parent.
- Health Resources and Services Administration
Find information on free medical care for those who qualify.
- Well Spouse Association
Well Spouse Association
- National Council on Aging
Find current information on elder care, related issues, and available programs.
- Directory of Home Modification and Repair Services
Assistance in finding local services.
This page covers important information about depression in older adults and the elderly. Information includes causes, signs and symptoms, and how to help.
This content is accurate and true to the best of the author’s knowledge and is not meant to substitute for formal and individualized advice from a qualified professional.
© 2009 Ruth Coffee
Your Suggestions and Experiences About Caring for Parents
KayeSI on June 21, 2012:
Excellent lens. My senior dad passed away a few years ago in the end stage of Parkinsons Disease. I was intrigued to note we went through many of the same things as you and your family did, including the medication and hallucination issues.
I totally second your comment about going with our aging parents to the doctor's visits whenever possible. It really makes a great difference, doesn't it.
And I was very interested to read about the therapy exercise option. We are actually doing that with our center's aquatics area. We pay what averages out to $20 a week to use the pool for walking on the pool treadmill. It's been such a big help for my senior mom - keeping her more active no matter the weather. I'll have to ask if they offer that option for other areas as well.
Thanks for a great resource!
KateHonebrink on April 09, 2012:
Very complete, informative lens. It is so very difficult dealing with aging parents and your lens would be very welcome to those struggling with that issue. Nicely done!
getmoreinfo on March 22, 2012:
This is well presented information and I am going to feature it on my power of attorney lens.
DJHughes on February 17, 2012:
I know several people having to care for their parents and I will need to care for my own soon enough. Thanks for the good info and a great lens! Stop by my lens too. I hope you 'Like' it! http://www.squidoo.com/dementia-activities
iCare4uk on October 11, 2011:
Really nice lens.
sukkran trichy from Trichy/Tamil Nadu on August 12, 2011:
an important topic and well written article. thanks for sharing your experiences. ~blessed~
anonymous on April 21, 2011:
WHEN CARING FOR PARENTS THE KIDS NEED TO LEARN PATIENCE AND TAKE NOTICE WHEN GETTING FRUSTRATED AND CONTROL EMOTIONAL OUTBURSTS..ELDERLY PARENTS ARE ALREADY INSECURE AND FULL OF SELF DOUBT SO TO RATTLE THEM AND INTIMIDATE THEM ONLY KEEPS THEM FROM TELLING OR ASKING YOU FOR HELP..
LISTEN TO WHAT THEY ARE SAYING OR TO WHERE THEY SAY THEY HURT OR ACHE..DON'T' DISMISS IT AS "OH IT'S NOTHING"..YOU ARE NOT THE PERSON LAID UP IN THE BED OR HOBBLING AROUND ON CRUTCHES...TAKE THE TIME TO FIND OUT WHAT IT IS THAT IS MAKING THEIR LIVES UNCOMFORTABLE..TALK SOFTLY AND REASSURE THEM THAT THEY ARE NO BURDEN AND YOU ARE HAPPY TO HELP..THEN IF HAVE TO WALK OUT OF ROOM AND GO TARGET SHOOTING OR KICK BOXING...IT IS A HARD JOB AND BEYOND STRESSFUL..BUT WHEN ITS YOUR PARENTS IT SHOULD ONLY AND ALWAYS BE HANDLED WITH RESPECT AND LOVE.
sorana lm on April 18, 2011:
Excellent and very informative lens. Thanks you for building it.
KayeSI on April 07, 2011:
Very interesting! My senior dad also had Parkinson Disease and when he reached end stage Parkinsons, we went through the same medication issue you did. Praise God, they were able to help us resolve it within two weeks, but it was a very tough two weeks!!!