“What’s your biggest frustration with helping aging parents, or aging loved ones?”
This was the question that I emailed last month to the readers subscribed to Geriatrics for Caregivers.
I asked because in order to provide truly useful information on this website, I felt I should check in and learn more about what you’re finding especially challenging.
In response to my inquiry, I received a number of replies, I learned quite a lot, and as usual, I found myself inspired by the remarkable efforts you are undertaking.
Now, I hadn’t initially been planning to share people’s answers on the blog. But when a reader wrote to me asking about the results of the “survey,” I realized that many of you may be wondering: “What do other people find most frustrating about helping an aging loved one?”
Below, you’ll find a series of quotes from the responses. I hope you find them as enlightening and inspiring as I did.
[Many thanks to the respondents for giving me permission to share their insights!]
What Readers Say is Hard About Helping an Older Loved One
“My biggest problem with dealing with my aging parents (both in their 80s) is the delicate “dance” of trying to help them while still respecting their own right to make choices for themselves…My mom had some sudden health issues this summer which, now that they’re pretty much handled, have left her suddenly aged and also with some minor short-term memory problems…It’s tough to know how far to push or how much to do for her…I’m also having to tread lightly about suggesting things [my father] hasn’t thought of…In short, it’s a little tough dealing with the reversal of roles when they aren’t totally reversed.”
“I’m a caregiver for my wife who has mid range vascular dementia. My concern is that our several children are worried I will be overcome from the 24/7 care giving…I don’t want my children worrying about me. I feel so far I am able to handle and cope with the situation. My wife and I are preparing to move from our home to an assisted living community with a memory care unit.”
“I think the biggest problem is that my friend was put into a home without her permission because she kept leaving the stove on high and kept burning food and her family was worried that she would burn herself and burn the building down. She also has just started having problems with dementia. All this started happening about 6 months ago. She’s been in a care facility ever since. She doesn’t have hardly any room to call her own. She doesn’t feel at home there or won’t make any friends there. Because of the fact she was put into the center so fast and without her permission, she doesn’t understand or accept what’s going on or what they tell her.”
“Most of the elderly are not prepared to have a caregiver – too proud, too independent, and have not put their affairs in order. Those that have done this are often surprised that their adult children do not want to follow their wishes for end of life decisions. Many of the elderly also have spouses and adult children that do not want to talk about death even if they do. Often the [family] caregivers are not trained in how to handle the stress and take care of themselves as well.“
“Parent is overly critical about EVERYTHING. Parent is negative/knows everthing/monopolizes me. Parent refuses to acknowledge she needs depression medicine.”
“The hardest part is doing what needs to be done while respecting their (shrinking) autonomy.”
“Communicating with and caring for people with Alzheimer’s is the most difficult situation of all…There is lots of content-less sort of mushy-emotional advice on caring for aging parents, and it is almost entirely worthless. The scientific information you provide about conditions, drugs to avoid, hospital delirium, etc… is something that most of us don’t get help with (due to the lack of geriatricians in most communities, including mine).”\
“The things that have probably frustrated me the most in caring for my mother are the lack of resources and available training to function as a caregiver and the continuing lack of resources that I have received from our hospice program.”
“For me it is my wife with Alz. I don’t try to correct her recollections but that creates my world and her world and so we have less of a relationship. I still struggle with letting her mistakes go by. I know, if not dangerous, ignore them. However there is a decay of the quality of living, keeping house, efficiency, costs, and other degeneration of our lifestyles.”
“I think the hardest thing is compliance. I try hard to help them, with ideas and advice (maybe too much advice!). Most of the time they will listen and then just go about the same way they are doing things. And then they continue to suffer. The problem is compounded because I live far away from my parents. I feel that they would have better health if I were nearer to help watch over them. So lots of guilt!”
“My wife was frustrated that she couldn’t visit with her [mother] more often (we live a few hours away), at the lack of communication coming from her sibling who literally visited everyday, that her sibling (trustee) didn’t provide any financial information whosoever (not even an annual balance sheet), and that her Mom vented at her, and not as much to her siblings. She’d had been after her mom for years to take care of herself, but was blamed for her mom’s predicament. The most profound frustration was that she was sorry her mom wasn’t able to enjoy life more – the core problem seemed to be her depression (for which she quit taking meds).”
“The biggest frustration I observed with my mother was getting her to acknowledge and accept the fact that she would need elder care. As she got older, all the care fell on my sibling. I suspect that people of her age assumed that their children would have the problem of providing care. It worked for her. Maybe there should be some mandatory “birds and bees” kinds of discussions with aging parents, beginning around age 55.”
Key Takeaways
I came away from reading these responses with three key takeaways:
- Managing relationships — parent-child or sibling-sibling — is a big part of the challenge.
- Honoring an older person’s autonomy and independence can be tricky, especially when health crises or declines develop.
- Helping our older loved ones plan ahead regarding their care and their preferences is often difficult.
These truths highlight, I think, why helping older adults with health and healthcare is so hard.
Not only is it medically challenging, in that what works healthwise for younger people usually should be modified for older people, and in that there is often no clear answer on what’s “right” medically (although geriatrics care points towards what’s usually “better”).
But even once you’ve uncovered better options for health and healthcare, you still face huge challenges in offering help while respecting an older person’s dignity and sense of autonomy.
Clearly, we all have our work cut out for us. You’re trying to find ways to help your loved ones, and I’ll need to keep working on finding ways to help you and your loved ones.
For now, I will keep doing what I can, to provide useful health information on this site, while keeping in mind that the relationships and emotional elements are powerful shapers of your caregiving experience.
Do you have more to share on what’s especially hard about helping older loved ones? I’d love to hear from you in the comments below!
Michele says
I also struggle with taking care of both parents. My dad is 91 and my mom is 86. I recently got them in home health care to help my father with his personal hygiene due to recent falls in the bathroom. I jumped through hoops to get it set up. I met with my parents and my fathers social worker through the VA then my husband and I met with the caregiver company and my parents. Well after a week my mom calls and canceled the service. Of course my husband is furious and it caused tension in our marriage. Now I am dealing with my parents and my husbands attitude towards them because they cause me so much frustration. Is there any way to balance being a caregiver and a wife and mother?
Leslie Kernisan, MD MPH says
Your situation is hard but not uncommon. Helping aging parents can be a lot of work and often feels like three steps forward and two steps back!
The main thing I would recommend is a support group and guidance. We now offer a Helping Older Parents Membership for exactly this reason; you can learn more here.
Good luck and take care!
Nancy says
I meant to type adgenda instead of “addenda”.
Also, I try not to complain and don’t want to to be the one that when I call them, they say, here she goes again, complaining about mother. I just wish they were more engaged in her life and how much it takes in my time and energy. I think they don’t have a clue and really don’t want to know. Or they know and have the convenience of saying to themselves there is nothing they can do about it. But just talking to me would help, but not about the weather-please! Sorry about the rant
Leslie Kernisan, MD MPH says
I know you’ve probably tried to talk to your siblings, but maybe taking a different approach might help you get through to them? I like the book “Difficult Conversations: How to Discuss What Matters Most“.
You could also try doing a session with your siblings and a mediator and therapist, that often helps families make headway. Good luck!
Nancy says
My mother is 93 yrs old and has live with my family for the last 14 years. My mother is very healthy mentally and physically, for a 93 yr old. But it has become very stressful on my family and particularly me having her with us 24/7. She won’t travel, she won’t go visit my brother or sister. You would think we were killing her if we plan a trip. But if it’s a trip and I’m going with her then she will go to the moon with me. She has embedded herself in our lives and has very little social life of her own, therefore wants to know our “addenda” everyday-her word. Where we are going, when we will be back, if I have lunch with a friend, she wants to know what we talked about. I have tried to explain to her how I have my family and I am an adult and if we did not live together she would not be asking or be thinking about everything I was doing. I have tried to set her up with a driver to take her places twice a week, but she only wants me. I went back to work full time to limit my time with her. I am also angry with my brother and sister who live out of town. They never call me to see how I’m doing, to ask how it’s going with mom. they call her and she gives them sunshine and roses pictures and I’m dying inside. My sister used to help a lot by coming to visit a few times a few times a year, but has had some health problems recently. her daughter nicely told me not to bother her about our mother, but I sure haven’t heard from my niece. Noone realizes what it’s like to take care of some one unless you have done it. And I hate the” it can always be worst”
I so much do not want to be like my mom when or if I am blessed to live a long healthy life like her.
Leslie Kernisan, MD MPH says
Thank you for sharing your story. Having an older parent in your home for 14 years is a real feat of devotion and endurance. It is also often exhausting and much more than people realized they were getting into. It sounds to me like you have done more than enough and at this point it would be reasonable for you to try to carve out a little more time away from caring for your mom. How to achieve this is tricky, esp since she is resisting help from others and your siblings have gotten used to you doing the work. I would recommend joining an online support group, to get some moral support and also to get ideas on what to do. The caregiver community at AgingCare.com is quite active.
You might also find it helpful to read the book “Coping with Your Difficult Older Parent: A guide for stressed-out children.” This book has good suggestions on how to set reasonable limits with a demanding parent, while remaining compassionate and caring. Good luck and take care of yourself, you deserve it!
Sandra Shaffer says
I don’t want my children to have to take care of me at all. I want to be able to set up something that will give me the independence I need for as long as I need it. How do I do that when I live way below the poverty level at age 66? I am currently in subsidized housing. Do I need to have long term Heath Care insurance paid for shed of the time I will need it?
Leslie Kernisan, MD MPH says
Yes, unfortunately it can be challenging to figure out how to plan ahead for any long term care needs. Most people don’t want to rely on their children, but at the same time, it can be expensive to pay for care or long-term care insurance, and we don’t really have good publicly available alternatives. The main program that helps older adults with long term services and supports is Medicaid. Eligibility criteria vary by state, but they are often quite restrictive.
We did a podcast interview on the complexities of long-term care insurance: 059 – Interview: Long-Term Care Insurance & Financing Late-Life Care Needs.
Otherwise, I recommend Planning for Long-Term Care for Dummies, written by the very insightful Carol Levine.
In general, our society needs to develop better programs, so that older adults can get the help they need without overly relying on their children or family members. (Not everyone is lucky enough to have family, or to have family willing and able to help.)
good luck!
Shirley Bonifacio says
I have been the primary caregiver for my soon to be 89 year old mother for the last 12 years since her stroke. Each year gets harder and harder with new challenges.
My biggest challenge is accepting her illness, which appears to be about stage 5 dementia now. I get frustrated trying to respond to her questions. She can only seem to understand simple one word responses. She has lost all reasoning capability, and will keep asking the question over and over.
To help her keep some independence, I try to prompt her when she asks things like what’s next while changing her clothes. She also refuses to shower…each week it is a constant battle…many times she wins and we wait another week.
She also has OCD symptoms and wants everything done a certain way in a routine or she gets very irritable.
I get short with her out of my own frustration and guilt that I’m not doing enough. I came across this site while trying to find answers…how to be a better caregiver.
Scary thing is she only spends about 4 hours a day with us and I’m already about to pull my hair out. I think she needs 24/7 care and will most likely need to move in with us soon. How will I ever manage 24/7 care? I want to be able to maintain my primary full time job (working from home) until I retire in 10 years.
God, please help me to be a better caregiver and accept your will!
Leslie Kernisan, MD MPH says
Thank you for sharing this story. It sounds like you are doing quite a lot to help her, she’s lucky to have you in her life.
It is indeed really common for people to find themselves stressed and exhausted by ongoing caregiving of this type. Here are some things that can help:
– Join an online caregiving community. The one at AgingCare.com is good, very active and supportive, lots of people in similar situations to yours.
– Set reasonable limits. You don’t have to do everything that your mother or others want, or need. It is ok to sometimes choose what’s better for you, rather than what always seems better for her. I would especially recommend thinking it over carefully before having her move in. As the other caregivers at AgingCare.com will tell you, that can sometimes be a recipe for major caregiver burnout. Be sure to consider all the available alternatives first. You need to keep your caregiving experience sustainable so that you can continue to be there for your mom in at least some capacity, and you also need to consider your own health, finances, and more.
– For dementia care, learning how to better manage dementia behaviors can help. We have more here:
7 Steps to Managing Difficult Dementia Behaviors (Safely & Without Medications)
I also have more on planning for dementia decline here:
How to Plan for Decline in Alzheimer’s Dementia:A 5-Step Approach to Navigating Difficult Decisions & Crises with Less Stress
Good luck and take care!
Isabel says
The hardest thing for me (the daughter) in taking care of both my elderly parents is that i feel alone doing this .
I deal with both there emotional ups and downs the arguments between each of them often feels like i am watching a tennis match then there is the school yard politic’s at the residence they live in … but the toughest of all is trying to change there mind about why they need to do things differently now 🙁
And being able to do all this with out loosing it myself !
Leslie Kernisan, MD MPH says
Thanks for sharing your story. Yes, taking care of both parents is tough, and I do hear many family caregivers say they feel alone or isolated.
Have you tried participating in any support groups for people in your situation? You might be able to find one locally, and then another option is to join an online community, which often allows more flexibility for people who are busy. There is a very active forum at AgingCare.com, which you can find here: https://www.agingcare.com/caregiver-forum. This is a good place to vent, or share worries, or ask for practical advice.
Learning how to talk more constructively to one’s older parents and perhaps get them to change certain things is REALLY hard. I have some suggestions in this article: 4 Things to Do When an Older Person Resists Help.
I definitely hope you can find some more support for yourself soon, that is essential to maintaining sanity and wellbeing during this time. Good luck and keep us posted!
brenda says
hi. my family is caregiving my maternal grandma and if you are aware of the african culture of caregivng in a daughters matrimonial home then you have aclue of what happening. its been 3 years and still counting. when i enrolled for my masters degree last year i didnt have any idea what to write for my thesis paper then it just came up: social protection in old age. i am enjoying very much since i am mostly getting to learn about my situation as well as write my academic paper. its quite a blessing in disguise
Leslie Kernisan, MD MPH says
Social protection in old age is a terrific topic!
Yes, there is a lot that goes into caregiving. We have some programs and societal supports in place, but not nearly enough to meet the needs of aging adults and families. Good luck!
Jamee says
I’m also a long distance caregiver. My sibling is the daily hands-on caregiver for our mother. I help as much as she will allow me to, but lately she tries to refuse my visits and my efforts to help her with ANYTHING. Her mind is still good, but physically she is totally disabled. She strongly refuses home health care or assisted living. She has stopped bathing, and fights our attempts to help her with baths. This breaks my heart to see, and smell her now. She was once meticulous about hygiene, and her appearance. I know many elderly folks don’t like to bathe as often as they once did, but she puts up such a protest that we are only able to get her in the shower every few weeks. She wears us down, and eventually we give up. She pushes me away, because she fears I will force into nursing care, which she desperately needs. She also fights mealtime and our efforts to keep up her nutrition. She weighs less than 80 lbs due to her lack of appetite and refusal to eat, even refusing drinks like Ensure, as well as homemade smoothies that I’ve tried, custom made with ingredients she likes. Her history is long and complicated, but she does not suffer from any major illness, but has fibromyalgia, which causes pain all over her body.
Leslie Kernisan, MD MPH says
That is a tough situation, and it’s actually not uncommon.
Although you say her mind is “still good,” given the changes in hygiene you describe, I would be concerned about changes to her memory and thinking. If a person is having difficulty taking care of herself, it’s very important to have the thinking capacities assessed.
Here are two articles that might be helpful:
4 Things to Do When an Older Person Resists Help
What to do if your aging parent becomes rude & resistant
You might also want to listen to the podcast interview with attorney Carolyn Rosenblatt, who specializes in helping families who are struggling to help aging parents: Solving Hard Problems in Helping Aging Parents
Good luck!
Caesi Bevis / (Healthcare) Crisis Coaching says
I am just seeing this website and your question about hygiene and keeping your mother cleaner. This is August 2018.
For you or anyone else with this situation – there are two lines of products I found and even use myself that I really like. One if Medline which has two products I can recommend – one is a spray foam that doesn’t need to be rinsed. The other is a damp cleaning washcloth with seemingly the same product on it. It also does not need to be rinsed. Both are promoted as products to be used when you can’t shower.
Sage also makes a similar washcloth. These all work out to about 19 US cents per clean up. Instructions are on the package for how to clean someone so you do not spread germs in different personal cleaning areas. My preference is Medline. When it dries it is not sticky. Sage doesn’t feel sticky on the body, but on your hands, it feels sticky.
So how good are these products? I highly recommend these especially if you cannot shower due to being an asthmatic that is triggered by shower steam, or if traveling – or displaced due to a natural disaster like a flood or fire – and not able to shower regularly. These are also great if you have to run from work, to an evening event, and don’t have time to run home to shower first. These work as well as a shower.
Both products kill body odor and smell pleasant to use, and don’t leave a strong after chemical smell.
Time-wise, if you have a reasonably cooperative parent, figure it will take 8-10 minutes to clean someone up.
………..
Caesi Bevis, President
(Healthcare) Crisis Coaching
Leslie Kernisan, MD MPH says
Thank you for sharing these suggestions.
kevin moore says
it is hard to be a long distance caregiver to a mother and aunt who are do not want to acknowledge any diminished capacity on their part. My sister and I are hoping that they will agree to live intergenerationally but they are reluctant to do so
Leslie Kernisan, MD MPH says
Thanks for this comment. It is indeed very common for older people to resist the suggestion that they need help.
I recently read Dr. Atul Gawande’s new book, Being Mortal, and I thought it offered some good ideas on how to offer help, and how to express concern. If you read it, let me know if it was helpful to you.
Good luck!
Gerald Roux says
Dear Dr. Kernisan,
Your column on elder care is very helpful. Just reading your column gives me strength realizing I am not alone and there are caring, thoughtful people providing advice and encouragement. Thank you for your column and please continue.
Regards
Leslie Kernisan, MD MPH says
Thank you as always for encouraging me to continue!
You are definitely not alone…many people are facing the challenge of a spouse with dementia.
Have you tried any of the online caregiver forums for dementia? I believe there is one at the Alzheimer’s Association.