Looking Back on Caregiving

6 Things I Wish I Knew Before I Cared for My Parents
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You've heard the expression "hindsight is 20/20," and when it comes to family caregiving, it absolutely applies. Get any group of midlife adults together and you'll hear caregiving "war stories" about what they're facing when it comes to aging parents, and how completely unprepared they feel for what's ahead.

"We are not prepared for this situation as a culture -- there just isn't enough information out there," says Chicago-based Mary Kay Buysse, director of the National Association of Senior Move Managers (NASMM), who has had many years of experience in helping older adults make changes to their living situations. "People are blindsided when suddenly there's a crisis and Mom needs help and they're completely in the dark as to what's available and how to find it."

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To help you navigate this process with more insight, we've put together tips from experts and fellow caregivers on what they know now that they wish they'd known when they started the process of finding a safer situation for Mom and Dad. Having been there, done that, they have a wealth of wisdom to pass along to help you learn from their mistakes.

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1. "I Wish I'd Been More Realistic About What I Could Do."

"It's a huge commitment to care for an aging parent -- it's a lot of work," says Maria Basso Lipani, a social worker and geriatric care manager in New York. "I see a lot of adult children who say, 'I didn't think this through -- I want to help but I can't keep up this level of responsibility.'"

"This is really the first generation who's lived this long, so we have no road map, no compass," says Lipani. "People come up with a plan, thinking they're looking at 5 years of caring for a parent, when they're really looking at 20." When you overextend yourself with caregiving, you endanger your own health, both mental and physical, experts say. And you can end up mired in resentment, which is no good for anyone. Then there's the fact that you'll have to back off eventually, leading to guilt, self-doubt, and recrimination. Trying to be realistic in assessing your time, energy, financial resources, and additional responsibilities can help you make caregiving decisions that are practical for the long haul.

2. "I Wish I'd Known That Medications Can Affect People Differently as They Age."

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Medications that your parent tolerated just fine when she was younger may begin to cause unexpected side effects as time goes on, and many of these side effects can mimic signs of decline. "Reactions to a medication or to a combination of medications can cause so many problems that people might think are just a normal part of aging," says Bunni Dybnis, a geriatric care manager in Los Angeles, California, and spokesperson for the National Association of Professional Geriatric Care Managers (http://www.caremanager.org). Medications and medication interactions can cause grogginess, insomnia, dizziness, memory problems, increased falling risk, and even irrational or delusional behavior.

Lipani says one of the best ways to prevent these situations is to make sure your parent is seen by a geriatrician, who has specialized knowledge of the ways medication can affect a senior's mental and physical health. "Geriatric training is not part of standard medical training, and a lot of people don't realize this," she explains. "Your parent might have a great doctor who's seen him for 20 years, but that doctor might not know much about how medications can interact in an 85-year-old."

3. "I Wish I'd Understood How Attached My Mother Was to Her Things."

Whether you're helping a parent safety proof or reorganize a home, or move altogether, the process can be more traumatic than you're prepared for. And the ramifications can last longer than you might think, making adjustment to a new living situation more difficult than it would be otherwise, says Mary Kay Buysse. "Kids look around and they see all this junk, and they want Mom's new apartment to look pretty and neat and be easy to get around, and that's totally understandable," says Buysse. "But it might make a huge difference to Mom to have that junky dresser and all the little doodads, even if the room seems cluttered to you."

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What helps in dealing with this situation, Buysse says, is to have compassion and understanding for your parent's sadness and reluctance to part with her things. "By the time a senior is making this move, they've already experienced so much loss. They're moving because they've lost a spouse, their sight, their mobility, the ability to take care of themselves," Buysse says. Keeping this in mind may help you relinquish some of your need to take control and let your parent keep things that don't make sense to you but that may make a difference in how she weathers the change.

4. "I Wish I'd Realized That Someone's Memory Can Seem Fine, and They Are Still Losing Mental Capacity."

Stories abound of Mom or Dad becoming the victim of fraud, getting overinvolved in gambling, befriending questionable people -- all the result of bad decisions. At the same time, your loved one's memory seems fine: She can recall what she did yesterday, tell you about her favorite TV show, remember that her grandson loves a certain baseball player. What's happening, says Dybnis, is that someone may experience decline in executive function -- the cognitive abilities involved in planning, organizing, and decision making -- before they begin to seem forgetful. "The frontal lobe, which is the seat of logic, can go, and they can still have memory," says Dybnis. When your aging parent starts doing things that seem out of character, illogical, or downright risky, it might be time to see a doctor about dementia.

5. "I Wish I'd Understood Sooner That Dementia Causes Anger, Rudeness, and Crazy Behavior."

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"My mother accuses the neighbors of coming into her house and stealing things and eating her food," says one family caregiver. "My mother says horrible things to my husband and me, then is as nice as you please to anyone who visits," says another. "My mother says I mistreat her and has turned my brother against me," says a third. Most people associate Alzheimer's and dementia with memory issues, but these diseases can also cause extreme changes in personality and behavior. People who were once kind, polite, and rational can begin to behave hatefully, make wild accusations, and see and hear things that aren't there.

Believing that these feelings and events are real can cause a great deal of pain and confusion for family members, according to those who've been in this situation. "I called the police three times before I realized that the 'robbers' that my mother said she heard and saw under her window weren't real," says one Caring.com member. "When my mother came to live with us and started saying awful things to my husband, I thought they really weren't getting along," says another caregiver. "I kept asking him what he'd done to offend her, which made him feel terrible, until finally I realized that people with Alzheimer's sometimes fixate like this." People with Alzheimer's may begin to make lewd remarks or even threaten to harm those they love.

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Understanding that it's the disease talking, not your loved one, can make it much easier to deal with the hurtful comments, caregivers say. And being on the alert for delusional behavior can prevent all sorts of unfortunate events, such as false accusations against caregivers.

6. "I Wish I'd Sought Medical Advice About What to Expect From My Parent's Health Situation."

Many of the most common conditions that afflict seniors, such as COPD, diabetes, and heart disease, are progressive. This means that understanding what to expect can give you a sort of "crystal ball" to see into the future. Lipani says she "strongly suggests" to her clients that they consult with their family members' doctors (which usually requires getting consent) and ask how their loved one's health issues might affect the need for care over time. "I tell people to ask, 'How might you expect my parent's health to change in the next several years, and how would those changes impact the amount of care she might need?' That way you're more prepared for how your caregiving situation -- and your parent's living situation -- might need to change down the road."

almost 2 years ago, said...

What a wonderful article, but I did have to change the title, to brother versus parents in my case. I became my brother's care partner in 2011 (never expecting) and what a roller coaster ride it's been as we were warned by his physicians (yet we took it on without a question). It's never easy to experience a loved one's disease or illness, if you have compassion and empathy you get involved in all aspects of care; the financial (always ?), legal (which can be overwhelming) and medical (a... Show more What a wonderful article, but I did have to change the title, to brother versus parents in my case. I became my brother's care partner in 2011 (never expecting) and what a roller coaster ride it's been as we were warned by his physicians (yet we took it on without a question). It's never easy to experience a loved one's disease or illness, if you have compassion and empathy you get involved in all aspects of care; the financial (always ?), legal (which can be overwhelming) and medical (a lot of sadness). With AZ my brother's moods fluctuate, mine can as well (educating one's self is a must and I have found I can never learn enough). Progression of the disease (ups and downs with no reason) brings changes for him, necessitating a step up in his care to make things easier for everyone (younger sister helping him is not always to his liking, I get it). Everything being right and good makes things easier; doctors, meds, day programs, care givers for help if needed, facilities for respite care (much needed for a care partner). Seeking out, maintaining, and assuring all is up to par, for today, can become a full time job, sometimes with no acknowledgment of your work. There's a "new normal" these days and I'll accept it, as long as I can. I've realized as siblings, the past doesn't matter, my memories do, good ones out weighing any bad and I feel sorry for him, worry, care and love him still. Faith and prayers prevail. God Bless All Caregivers Hide

almost 2 years ago, said...

A number of years ago my wife suggested that her mother move in with us and combine households. Fine, an active go getter, has a life of her own, no problem. Now she is helpless, wants to be waited on and kowtowed to. She leaves messes like a herd of 5 year olds on speed. 
 You thought you got past having to transport kids to band practice, soccer practice and meeting their needs. Now you have a senior who needs to get to frequent doctor appointments, special shopping trips and... Show more A number of years ago my wife suggested that her mother move in with us and combine households. Fine, an active go getter, has a life of her own, no problem. Now she is helpless, wants to be waited on and kowtowed to. She leaves messes like a herd of 5 year olds on speed. 
 You thought you got past having to transport kids to band practice, soccer practice and meeting their needs. Now you have a senior who needs to get to frequent doctor appointments, special shopping trips and entertainment to boot. 
 As retirement approaches now it was once thought of as a time for leisure, travel and maybe a second act. Now you have to stay close to home for emergencies.
 I would rather go to work. The companionship is less demanding, the money is good and I get to be more of who I think I am. Hide

almost 2 years ago, said...

What every caregiver must remember. If you must put your Parent in a Nursing Home here are some tips to make sure your loved one is getting good care. Pop in to visit at different times. Don't be consistent with your visits. If you are the staff will know to have them cleaned up and looking well cared for. Get lists of the Medications they are given and research each one for possible side effects. If your loved one will be having other visitors place a composition notebook by the bedside... Show more What every caregiver must remember. If you must put your Parent in a Nursing Home here are some tips to make sure your loved one is getting good care. Pop in to visit at different times. Don't be consistent with your visits. If you are the staff will know to have them cleaned up and looking well cared for. Get lists of the Medications they are given and research each one for possible side effects. If your loved one will be having other visitors place a composition notebook by the bedside table for the guests to write down how your loved one looked, where your loved one was, and what your loved one was doing. With staffing so short. Visiting at random times is extremely important to keep staff on their toes. Even visits at 2am. Any time is the best time. At night the doors will be locked, but you can ring a doorbell and be let in. Never be predictable. Hide

almost 2 years ago, said...

Very informative. I am 68 years old and have forwarded this article to my children, sisters and brothers and friends whose families should read it! It is very realistic to prepare and unfortunately many of our children do not want to think about the end of our lives. Thank you Very informative. I am 68 years old and have forwarded this article to my children, sisters and brothers and friends whose families should read it! It is very realistic to prepare and unfortunately many of our children do not want to think about the end of our lives. Thank you Hide

almost 2 years ago, said...

Thank you for such an accurate overview for the adult family caregivers. I so connected with your term, no road map, but we navigate and keep learning. I am so happy I found this informative, supportive website, and continue to tell others of it . Thank you for such an accurate overview for the adult family caregivers. I so connected with your term, no road map, but we navigate and keep learning. I am so happy I found this informative, supportive website, and continue to tell others of it . Hide

almost 2 years ago, said...

My Brother gave up his life in DC and moved to Texas to help take care of our Mother who has had 3 strokes and has lost the ability to use her left side. She was 66 and was working full time, very independent, lived alone, just bought a brand new car . Now we are living in our Cousins house. I am 48 and My youngest kid is 15. My Brother works from home and I do all the physical things. Transfers, potty, dressing, medications. It is the hardest thing I could imagine. Not only mourning the... Show more My Brother gave up his life in DC and moved to Texas to help take care of our Mother who has had 3 strokes and has lost the ability to use her left side. She was 66 and was working full time, very independent, lived alone, just bought a brand new car . Now we are living in our Cousins house. I am 48 and My youngest kid is 15. My Brother works from home and I do all the physical things. Transfers, potty, dressing, medications. It is the hardest thing I could imagine. Not only mourning the loss of who She was as My Mother, but the care She requires. I was an L.V.N. for 26 years and worked mostly in geriatrics with 5 years Alzheimer's training. The thought of a Nursing home is out of the question for me. They are always under staffed, unless State is in the building. I am having a hard time finding an Adult Daycare Center to not only give her a social life, but also to give me releif. She is a very social person. Please help. Hide

almost 2 years ago, said...

Sharing this with all my siblings ...now. Sharing this with all my siblings ...now. Hide