Ask an Expert
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NOVEMBER TOPIC: Caring for Elderly Parents
Bette Ann Moskowitz
Award-Winning Author & Former Long-Term Care Ombudsman |
OUR EXPERT:
Bette Ann Moskowitz is an award-winning author and teacher born in Bronx, N.Y. She wrote her first book – a mystery - in a school notebook at the age of nine. A “true daughter” of the City University of New York (bachelor’s from Hunter College and master’s from Queens College), Bette has an eclectic resume, including writing publicity for Decca Records, songs that garnered modest royalties, plays (one of which was granted an audition for Broadway), stand-up comic routines, op-eds and essays for The New York Times. She has written several books, both fiction and non-fiction. Her memoir Do I Know You? A Family’s Journey through Aging and Alzheimer’s won a New York State Foundation for the Arts Fellowship for Literary Non-fiction and The Room at the End of the Hall: An Ombudsman’s Notebook was a Finalist in the same category. Her latest non-fiction book, Finishing Up, a personal look at the very public subject of aging and ageism in America will be published by Dio Press in 2020. She entered the digital publishing world with SANCTUARY and has continued with publication (and podcast) of her short story, “Hippopotamus” at Sunlitfiction.com. Her blog, Vinegar Mother, which she posts every Monday, is gaining readers by the tens. They say it is a good way to start out their week with a smile. Note: Bette was a 2017 Featured Artist in Sanctuary. |
“I’m looking for tips on how to deal with aging parents who want to stay in their home because they think they don’t need help. In reality, they need a lot of help and lots of desperate updates to their home.” ~ Lynne (NY)
Dear Lynne,
Good for you for reaching out.
Getting older makes a lot of us averse to change. Chances are that your parents are a little frightened. So, my tip #1 is allay their fears. Make it clear that you don’t want to drive them out of their home. (Unless you do. Do you?) Be clear in your own mind about what your parents need. What are the “desperate updates” and why do they need them? What would happen without them? Are these matters of safety and security? If they are, ask yourself why they don’t want the help you feel they need. Do they deny they need it? Do they claim they will do the “updates” themselves, in their own time? Do you suspect they can’t afford to make them and are ashamed to say so? Is it possible your urgency makes them feel they have to “defend” themselves from your loving concern?
Try changing the tone. Don’t argue or insist. Consult them. Make it a “we” instead of a “you.” What can “we” tackle first? (“How about let’s remove the scatter rugs, mom. I just read that tripping is one of the leading causes of falls in the home.”) Work for little changes. See what small updates they will agree to, so they (and you) can ease into what is best for them.
Do some homework. There is help out there. Your local Office for Aging or Department of Aging can give you information about how aging homeowners can make and pay for safety updates. Stair lifts, chair lifts, grab bars, walk-in showers, ramps…widening doors. In my county, there is an organization called Resource Center for Accessible Living which will loan assistive devices and provide consultation about installing safety aids. Have contact information ready and offer to make appointments and sit in, in case your parents are overwhelmed by the mechanics of making these updates.
BUT Lynne, if your “updates” are less about danger and more about the house being too big, or cluttered, or there is a shabbiness which makes you uncomfortable, take a deep breath and step back. It’s their house and their lives. And now is the time to establish that you respect that fact and care more about them than about stains on the rug. If you gain their confidence now, then when it does become an issue of safety, they will feel secure that you have their well-being in mind. Hang in there, Lynne. There’s no place like home.
“I’ve been my mom’s caregiver at home for five years now, and she is exiting slowly and in inches, and it’s not so graceful...it is challenging - emotionally, spiritually, physically, and financially. How can we care for our elderly when nursing homes are the WORST places to go to die?! (As an End of Life Doula, I know this first hand.)” ~ Sue (CT)
Dear Sue,
I wish I had an easy answer as to how we can “care for our elderly when nursing homes are the WORST places to go to die?” Unfortunately, I have the hard answer: do what you are doing now. Being a caregiver for a loved one is difficult and, as you point out, growing old is often not graceful.
My suggestions, I imagine, are all ones you have explored and still make use of: Elicit help where you can - siblings, friends, respite programs - which will give you a break and ensure you will not burn out. Hire part-time help if you can afford it. If you are a joiner, join a caregiver support group. Some people find solace in company, and sometimes you can learn new ways of coping from other caregivers.
As to nursing homes being the WORST, I do not disagree. However, in some circumstances they become necessary, as when the physical tasks go beyond what a caregiver can do at home alone, or complicated medical issues require actual nursing care. When it becomes a case of you not giving in to the inevitable rather than avoiding the avoidable, I would say don’t waste time feeling guilty. Find the best nursing home near you (this is key) and get your mother in, then turn yourself from the best caregiver into the best advocate for your mother’s care. This includes visiting frequently (randomly, so you can get a good picture of how she’s treated whether they expect you to show up or not). Get to know the nursing supervisor and the social worker, and her hands-on caregivers. Be friendly (but not obsequious). Remember, they didn’t go into this field for the big bucks, and if they aren’t doing their jobs well, maybe they are as stymied by the system as we all are. Present yourself as part of the “team” caring for your mother, willing to work together to fill her needs. But make it clear that this is the goal, and never, ever put their schedules before her needs. Example: If it is important to her to watch her favorite TV show at 8pm, but they want to give her the sleepy-making meds before the shift change at 7, THEY have to make the change, not her. Have it put it in her “care plan” as crucial to her well-being.
You get the idea. The “rules” of nursing homes do not favor residents, they are for the smooth running of the business, so join the Family Council, if they have one, and try to change the rules or work within them for your mother’s benefit. Sue, you are doing hard work. But until we all come to grips with the extent of ageism in our society, the care for our elders will continue to suffer.
“It’s really hard to make suggestions when you are the child. Parents can be extremely stubborn or offended because they think you’re patronizing them. They want to maintain a sense of control. So…my question is: What’s the best way to broach sensitive subjects…such as hiring an aide?” ~ Anonymous (TX)
Dear Anonymous,
You’ve got it, exactly! A lot of aging parents have a hard time accepting help from their own children because it seems to suggest that they are incompetent. How could it not be so? The very same human being that you once nurtured, fed, cared for, wiped her nose, and taught to drive is now telling you that you need someone to wipe your nose, drive you around, and care for you because you can no longer do it yourself. Who wouldn’t be offended?
Of course, at the same time, who cares more than that very human being (you!) who was once nurtured? The whole situation is touchy at best, and painful at worst. Keeping this in mind, the best way to broach subjects like hiring an aide for your aging parents is to be honest and loving.
Some tips for you:
1. Express your worries firmly, but try not to accuse or scold, especially if you are responding to things that have already happened. (Dad has fallen three times in the last month, or mom has forgotten to take her pills more than once, or they left the oven on over a whole weekend.)
2. If your worries are about things that might happen in the future, admit it (to yourself and your parents). Peace of mind is part and parcel of a good quality of life for all concerned.
3. Do your homework ahead of time. Have a list of agencies, caregivers, costs. Interview some of these people beforehand, keeping in mind your parent’s likes and dislikes, prejudices, particularities. Some people like chatty helpers, other don’t. If your parent likes to be out and about, such as going out to lunch, it would be more important to hire someone who is comfortable driving.
4. Involve your parent in the decision. Can you present it as a choice between having an aide and having to move to a caretaking facility, like assisted living or nursing home? (I don’t mean threaten, I mean a choice.)
5. Be prepared to back off and wait. Sometimes it takes bringing it up a few times so that the shock of a “new normal” gives way to the idea of an easier life.
Good luck!
“What are the documents I should be sure my parents have taken care of BEFORE their cognitive health begins to decline?” ~ Pat (PA)
Dear Pat,
If your parents haven’t already done it, I would recommend they have a Last Will and Testament, which covers their property and goods and advance health care directives (also called a Living Will), detailing how they want to be treated if and when they become mentally or physically incapacitated. It will detail, not only their wishes, but whom they designate to carry them out. If their property and goods and who they want to leave them to are not complicated, there are forms online.
There are also eldercare attorneys who are expert in doing this. My Office for Aging in Upstate New York has an elder attorney who volunteers his time once or twice a week, and for small donation, will prepare a Will.
Some people arrange for their “departures” as well, buying cemetery plots, pre-arranging for funerals and/or arranging for cremation.
Dear Lynne,
Good for you for reaching out.
Getting older makes a lot of us averse to change. Chances are that your parents are a little frightened. So, my tip #1 is allay their fears. Make it clear that you don’t want to drive them out of their home. (Unless you do. Do you?) Be clear in your own mind about what your parents need. What are the “desperate updates” and why do they need them? What would happen without them? Are these matters of safety and security? If they are, ask yourself why they don’t want the help you feel they need. Do they deny they need it? Do they claim they will do the “updates” themselves, in their own time? Do you suspect they can’t afford to make them and are ashamed to say so? Is it possible your urgency makes them feel they have to “defend” themselves from your loving concern?
Try changing the tone. Don’t argue or insist. Consult them. Make it a “we” instead of a “you.” What can “we” tackle first? (“How about let’s remove the scatter rugs, mom. I just read that tripping is one of the leading causes of falls in the home.”) Work for little changes. See what small updates they will agree to, so they (and you) can ease into what is best for them.
Do some homework. There is help out there. Your local Office for Aging or Department of Aging can give you information about how aging homeowners can make and pay for safety updates. Stair lifts, chair lifts, grab bars, walk-in showers, ramps…widening doors. In my county, there is an organization called Resource Center for Accessible Living which will loan assistive devices and provide consultation about installing safety aids. Have contact information ready and offer to make appointments and sit in, in case your parents are overwhelmed by the mechanics of making these updates.
BUT Lynne, if your “updates” are less about danger and more about the house being too big, or cluttered, or there is a shabbiness which makes you uncomfortable, take a deep breath and step back. It’s their house and their lives. And now is the time to establish that you respect that fact and care more about them than about stains on the rug. If you gain their confidence now, then when it does become an issue of safety, they will feel secure that you have their well-being in mind. Hang in there, Lynne. There’s no place like home.
“I’ve been my mom’s caregiver at home for five years now, and she is exiting slowly and in inches, and it’s not so graceful...it is challenging - emotionally, spiritually, physically, and financially. How can we care for our elderly when nursing homes are the WORST places to go to die?! (As an End of Life Doula, I know this first hand.)” ~ Sue (CT)
Dear Sue,
I wish I had an easy answer as to how we can “care for our elderly when nursing homes are the WORST places to go to die?” Unfortunately, I have the hard answer: do what you are doing now. Being a caregiver for a loved one is difficult and, as you point out, growing old is often not graceful.
My suggestions, I imagine, are all ones you have explored and still make use of: Elicit help where you can - siblings, friends, respite programs - which will give you a break and ensure you will not burn out. Hire part-time help if you can afford it. If you are a joiner, join a caregiver support group. Some people find solace in company, and sometimes you can learn new ways of coping from other caregivers.
As to nursing homes being the WORST, I do not disagree. However, in some circumstances they become necessary, as when the physical tasks go beyond what a caregiver can do at home alone, or complicated medical issues require actual nursing care. When it becomes a case of you not giving in to the inevitable rather than avoiding the avoidable, I would say don’t waste time feeling guilty. Find the best nursing home near you (this is key) and get your mother in, then turn yourself from the best caregiver into the best advocate for your mother’s care. This includes visiting frequently (randomly, so you can get a good picture of how she’s treated whether they expect you to show up or not). Get to know the nursing supervisor and the social worker, and her hands-on caregivers. Be friendly (but not obsequious). Remember, they didn’t go into this field for the big bucks, and if they aren’t doing their jobs well, maybe they are as stymied by the system as we all are. Present yourself as part of the “team” caring for your mother, willing to work together to fill her needs. But make it clear that this is the goal, and never, ever put their schedules before her needs. Example: If it is important to her to watch her favorite TV show at 8pm, but they want to give her the sleepy-making meds before the shift change at 7, THEY have to make the change, not her. Have it put it in her “care plan” as crucial to her well-being.
You get the idea. The “rules” of nursing homes do not favor residents, they are for the smooth running of the business, so join the Family Council, if they have one, and try to change the rules or work within them for your mother’s benefit. Sue, you are doing hard work. But until we all come to grips with the extent of ageism in our society, the care for our elders will continue to suffer.
“It’s really hard to make suggestions when you are the child. Parents can be extremely stubborn or offended because they think you’re patronizing them. They want to maintain a sense of control. So…my question is: What’s the best way to broach sensitive subjects…such as hiring an aide?” ~ Anonymous (TX)
Dear Anonymous,
You’ve got it, exactly! A lot of aging parents have a hard time accepting help from their own children because it seems to suggest that they are incompetent. How could it not be so? The very same human being that you once nurtured, fed, cared for, wiped her nose, and taught to drive is now telling you that you need someone to wipe your nose, drive you around, and care for you because you can no longer do it yourself. Who wouldn’t be offended?
Of course, at the same time, who cares more than that very human being (you!) who was once nurtured? The whole situation is touchy at best, and painful at worst. Keeping this in mind, the best way to broach subjects like hiring an aide for your aging parents is to be honest and loving.
Some tips for you:
1. Express your worries firmly, but try not to accuse or scold, especially if you are responding to things that have already happened. (Dad has fallen three times in the last month, or mom has forgotten to take her pills more than once, or they left the oven on over a whole weekend.)
2. If your worries are about things that might happen in the future, admit it (to yourself and your parents). Peace of mind is part and parcel of a good quality of life for all concerned.
3. Do your homework ahead of time. Have a list of agencies, caregivers, costs. Interview some of these people beforehand, keeping in mind your parent’s likes and dislikes, prejudices, particularities. Some people like chatty helpers, other don’t. If your parent likes to be out and about, such as going out to lunch, it would be more important to hire someone who is comfortable driving.
4. Involve your parent in the decision. Can you present it as a choice between having an aide and having to move to a caretaking facility, like assisted living or nursing home? (I don’t mean threaten, I mean a choice.)
5. Be prepared to back off and wait. Sometimes it takes bringing it up a few times so that the shock of a “new normal” gives way to the idea of an easier life.
Good luck!
“What are the documents I should be sure my parents have taken care of BEFORE their cognitive health begins to decline?” ~ Pat (PA)
Dear Pat,
If your parents haven’t already done it, I would recommend they have a Last Will and Testament, which covers their property and goods and advance health care directives (also called a Living Will), detailing how they want to be treated if and when they become mentally or physically incapacitated. It will detail, not only their wishes, but whom they designate to carry them out. If their property and goods and who they want to leave them to are not complicated, there are forms online.
There are also eldercare attorneys who are expert in doing this. My Office for Aging in Upstate New York has an elder attorney who volunteers his time once or twice a week, and for small donation, will prepare a Will.
Some people arrange for their “departures” as well, buying cemetery plots, pre-arranging for funerals and/or arranging for cremation.
