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.”
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!