Caring for Parents
Help for Aging Parents and Caregivers
Millions of adults find themselves increasingly in the role of caring for 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, I think few of us have role models for adult caregiving or elder care either. Luckily there are some resources out there, some support, services, and products that can help.
I put this page together to relate a few of my own personal experiences. If you've come upon this page, I hope you'll find something useful and I also hope you'll be willing to share knowledge or experience that may assist all of us who are caring for parents as they age either in their own homes, our homes, or elsewhere.
Please remember as you read this page that it's really about my own experience and doesn't represent any type of advice, medical or otherwise.
A Bit of Background About My Elder Care Experience
I got my Masters Degree in Speech Language Pathology and Audiology many years ago. I spent most of my career working with those who have traumatic brain injury as adults; due to gunshot wound, motor vehicle accident, falls, aneurysm, stroke/CVA, and other injuries and disease. As a therapist, I spent time evaluating and retraining language, speech, cognitive, memory, and swallowing skills. A bit later, I coordinated the rehabilitative team of physical, occupational, speech, and recreational therapies, psychology, social work, case management and more, before moving into management and later research & education. With all of this, I do have a bit of a background in working with both young adults and with aging individuals within healthcare facilities and their own homes.
My siblings and I have dealt with the health issues of our parents 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 and it took it's toll. We were there to provide assistance as needed. After my father's death in 2001, 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 but living a bit closer to allow us to do more.
I made this page from a purely personal perspective, to share with anyone who visits some ideas and resources that might help them along in 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, it will help me and others who visit who are facing the challenges of caring for parents as they grow older.
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 very beneficial for me or one of my siblings to attend appointments with my parents. When my mother found herself alone years later, I found this to be an absolute necessity. At first there was the emotional stress of the situation, and my parents benefitted from the help in formulating questions to ask, reporting issues completely, and in recalling all the detail provided by healthcare providers.
In some instances, elderly parents aren't accustomed to taking such an active role in directing their care. This obviously isn't true in all cases but for some, they just anticipate that the physician will know things without considering that there is information they need to relate as a patient. When asked "How are things going?", the 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. 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, but without someone else there, it seemed these thing might not get reported.
I also found that despite my career in working with adults with disability, my parents often didn't follow advice related to how to improve their situation. Not uncommon. I found it best to enlist the help of the physician whenever possible in convincing them to take certain actions; such as agreeing to take a nutritional supplement or going to a rehab facility for a short time to learn some exercises to do at home. Hearing such things from a stranger, a professional, rather than a bossy child is always best! For this reason, making sure the physician was someone my parents were comfortable with and who would take the time to talk with us was critical. I was lucky that my mother's doctor would take e-mail messages and would respond to calls from me consistently.
Caring for Parents Often Requires Special Attention to Medications and Compliance
In my elder care experience, working with a physician who has a specialty in geriatrics is critical to work through the special needs of older patients who may have a myriad of health issues and a number of medications.
Depression is not an area of expertise for me, but I know that it's not uncommon among the elderly in general. Certainly with family and friends often distant and illness and disability potentially pressing in on them, this 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 very carefully, particularly in older people who are often on multiple medications.
My father for instance, went through a period of confusion, accompanied by hallucinations and bizarre behavior. In the end, it was determined his medications, all of which he had been on for quite some time, had created the problem; exceeding their therapeutic levels. After a period of withdrawing some of them, he returned to normal.
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, too little makes it ineffective. 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. Even if this isn't necessary, be sure they have their medications in a bottle that they're able to easily open!
Another useful tip is to maintain a list of all of the current medications and their dosages so that it's available as needed, such as when going to see a consulting physician or specialist.
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's wise 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 injest or remember to take.
About Mobility, Strength, Endurance, and Balance
Often an Elderly Parent's Physical Abilities Can Be Improved
Ideally, attention to fitness at an earlier age can help a great deal in our later years. Clearly, how bones develop as youngsters and how well we maintain fitness in early years follows us into old age. In addition, it seems that when a person accepts that their physical condition and health is 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. Certainly for the elderly, it's important to be evaluated by a physician first, and in many cases, perform activities in a supervised fashion. 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.
Many rehab centers accept patients due to debilitation for short periods of time to get them started and back on their feet. Other options include home care if the individual is home bound but needs a physical therapist to evaluate and treat, or outpatient therapy for those who don't need nursing care and are able to go into the clinic to use the equipment available there. In any instance, once discharged from treatment, exercises can be continued at home.
Many extended care and rehab facilities across the country also offer general geriatric excercise programs that cost only $5-$20 a week which allow elders to be evaluated once and then make use of the facilities as they like; much like a health club.
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 it's arrival. It improved her physical condition and alleviated some of her social isolation as well. Obviously this would work only if the person was capbable of caring for the animal and enjoyed having them.
A Few Fitness Books for Healthy Seniors - An Ounce of Prevention is Worth a Pound of Cure!
About Assistive Devices and Adaptive Aides
Caring for Parents May Require an Evaluation of Their Environment
An evaluation of the home can be obtained to get a professional opinion as to what modifications can be made to an older person's dwelling to assist them in continuing to live in their own home as long as possible. Again a physician can order this.
If you're caring for parents who have a less urgent need, you can also keep an eye out for the types of activities that seem to present problems. One common problem area includes difficulty getting in and out of the bath tub. Installing sturdy grab bars is often a first step in assuring falls don't occur and no one gets stuck in the tub. Another option is the use of a tub bench that allows them to bathe without lowering themselves all the way into the tub. A handheld shower nozzle can also offer a solution and makes showering easier. A walk in shower (with no tub) is also useful as it generally elimminates 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 no slip mats are important too. Remember, towel racks don't double as grab bars as they're generally not mounted to hold a persons weight.
Another common adaptation is to remove any rugs that might cause a trip if the toe is caught on the edge of it. Any carpeting should be secure. All walkways should be cleared, with furniture and other items moved out of the pathway.
Getting up can be problematic and particularly hard when balance issues are present. Chairs should resist tipping and should 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's difficulty reaching them or operating them. Blinds and other items might also benefit from longer handles or controls. Reachers are available to help reaching for items dropped or those over the head.
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 are useful and easy to find while other special adaptive devices are available in home medical stores and pharmacies.
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.
Evaluation by an occupational therapist can also assist in identifying ways to assist an elderly individual in continuing their own self-care such as bathing and dressing. 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 periodically 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.
More About a Safe Home for Seniors
Thoughts About the Social Stigma Associated with Aging
I think that every child should grow up understanding that aging is a natural part of life. They should become accustomed to seeing older people using assistive devices and recognize that there can be quality of life despite the loss of some abilities. I think it's a disservice to hide such facts from them as their attitude toward such things could improve the lives of the elderly and their own lives when they begin to age. Perhaps we would be more accepting of the changes to our own bodies that occur as we age, if the aging process and the adaptations were more common/accepted during our younger years.
If people readily accept a remote control as a handy device when young, why is acceptance of a cane or a reacher to assist them later in life so often rejected? I think a great deal of it is socialization.
Perhaps we should all spend time in nursing homes and/or caring for our own grandparents to learn how much life has to offer even when disability is present while brightening the day of our elders as well.
About Depression and Social Isolation
Caring for Parents 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. Which is cause and which is effect is often difficult to tell. As I noted above, medications may help 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. Getting out will not only lift the spirts but provide additional 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, can keep her mentally busy and entertained.
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. Being able to take the time to listen and reminisce with them is important. 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, familiar surroundings, and so forth can sometimes force an unsure senior into staying home even more. On the other hand, if the move is toward family that 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, there's a need 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 lbs. 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. Eating is often a social event and eating alone assures less of an appetite, thus 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. 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 supplments 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 90lbs and her hair is filling back in after a year or more.
Regular weight checks are also 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 and do so safely. One critical risk is the use of the stove of course. Observing them prepare a meal is good to 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 Schwans that will deliver for those who have a more money to spend.
Physicians can also prescribe appetite stimulants if necessary and also examine any digestive issues. Swallowing problems can also occur due to decreased sensation or any 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, in some cases be the result of aspiration.
A final thought is just a reminder that hydration is also critical for good health, so don't overlook this either.
About Caring for Parents and Being a Caregiver
About Mental Stimulation
Caring for Parents Sometimes Involves Keeping Them Engaged
Staying mentally sharp is obviously critical and is an important consideration when caring for parents. 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. Certainly problems with medications can also present itself as mental decline.
Encouraging active participation in leisure interests, reading the paper, and so forth is good. Some advocate brain games, puzzles, and similar activities as well. 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 best when I tell her I need help with something which often motivates her to try something more challenging. I don't know any adult who wants to be treated as a child and certainly most people want to be useful as well; 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 however. 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 to make them more independent in any environment.
About Caring for Parents Who Need More Assistance
At some point, the elder care required may begin to involve more outside professionals as it involves more assistance than you can provide from a distance. As I mentioned earlier, you can hire assistance in the form of case managers to identify needs and coordinate services, personal assistants to assist with chores, errands, and companionship, Home Health Aides to provide baths and personal care, or even home nursing care and therapies.
With falls being the number one safety hazard, it's important that an elderly person always have access to help when needed. Although the ads for "I've fallen and I can't get up" have been ridiculed for many years, such products do provide a needed service. Finding an alert system that can be worn can provide the assistance needed if a fall happens and getting to a phone isn't possible. For those who are out and about, senior friendly cell phones can be a good answer.
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 where 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 that's needed. A physician, case manager, and the links below should assist in finding the necessary services.
The Resource Directory for Older People is a free book published by the US Department of Health and Human Services which can provide a directory to hundreds of services of interest. They can be contacted at (301) 496-1752.
Some Useful Websites Regarding Elder Care
- Children of Aging Parents (CAPS)
Find support services for caregivers. Learn about workshops and receive information about aging and support groups.
- 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 inforamation 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.
- Meals on Whieels
This site can help you locate a local program to get meals delivered to a disabled, frail or homebound individual.
- Health Resources and Services Administration
Find inforamtion on free medical care for those who qualify.
- National Institute on Aging
See current age related research briefs.
Find support groups for spouses who are caregivers.
- National Council on Aging
Find current inforamtion on elder care, related issues, and available programs.
- Directory of Home Modification and Repair Services
Assistance in finding local services.
- National Center on Senior Transportation
Assistance in finding transportation for seniors.
This page covers important information about depression in older adults and the elderly. Causes, signs and symptoms, and how to help.
- Caregiver Stress
Informative page on caregiver stress and tips for reducing the stress caregivers experience. Includes useful links for finding respite services to help those caring for parents.
- Caring for Caregivers
More resources to help caregivers cope.
Introduction Photo Credit: J.C.Rojas.