Health & Wellness
If your loved one no longer has a voice in which to defend or advocate for herself, who better to do so than you?
In this post I will assume that your loved one, e.g., parent, grandparent, spouse, or sibling, lives in a long-term care (LTC) facility. Oftentimes by the time our parent has entered a facility, we are so relieved that someone else has taken over the caregiving, we willingly take a back seat and let the professionals do their job. By all means, reward yourself with the freedom that less active caregiving of your loved one has afforded you, but don’t leave your caregiving role behind.
I know it’s hard to hear what I’m about to say – especially since you finally turned over your parent’s caregiving to someone else – but I want to encourage you to NOT assume that the care being provided (or withheld) is in your loved one’s best interests. It’s easy to have a perhaps unwarranted laid-back attitude because:
- mom is being taken care of by trained professionals who wouldn’t be doing this job if they didn’t love it; and/or
- mom is living in a ritzy/expensive place so it must be the best option for her; and/or
- this place couldn’t possibly have any problems as witnessed by the waiting list we had to climb to get her accepted.
I wish all of the above points were reason enough to become somewhat removed from the picture but the truth of the matter is that none of the above have any bearing on the quality of care being provided to your mom. Let’s take each point separately.
- Without a doubt, there are caregivers and management staff that truly do love what they do and this attitude is demonstrated in the compassionate way in which they care for your loved one. However, in 2007, studies showed that staff turnover rates ranged from 50 percent to well over 300 percent a year! There’s a reason why caregiver turnover is so high. This job is TOUGH and the pay is unconscionably low. A 2004 U.S. Dept. of Health and Human Services report addresses the front line long-term care workforce challenges which have only increased in the past several years. This report is worth your while to read. Learning is power – right?
- Champagne and chandelier facilities are just that – beautiful buildings on their face, but not necessarily representative of the care being provided. Don’t get me wrong, I’m aware that stellar higher-end senior housing companies exit, but it’s important that we not be lulled into thinking that glitz equals great. Sometimes what I call “generic” buildings oftentimes provide as good or better care.
- The waiting lists that so frequently exist for LTC facilities – especially for dementia care – are representative of the demand for space that, as of 2011, is not adequate for the burgeoning influx of Baby Boomers needing care. So a waiting list does not necessarily represent quality.
So here are some pointers for you that I hope encourage your continued involvement in your loved one’s care.
SPEAK UP. You don’t have to be a squeaky wheel to get the grease.
- Be persistent yet respectful.
- Take the time to be a part of your loved one’s care meetings/conferences with staff to discern their reasons for the care being provided.
- Be present: in person if you live nearby or by phone if you are a long distance family caregiver. Trust me, if the caregivers know that you care and are going to be an active family participant, you’ll get their attention, and so will your loved one.
OBSERVE. When visiting your loved one, observe her behavior and demeanor; her cleanliness and her appearance. How does it differ from visit to visit? Is her room tidy, clean and uncluttered? One way to observe staff members in action is to accompany your mom on facility outings. Observe the staff’s interaction with the residents. Do they speak respectfully to them? Are they patient with them? Do the residents enjoy their outings or do you get the impression that these outings are forced upon them? All of these impressions are important towards discerning what goes on in your absence.
ADVOCACY RESOURCES. Do your part in acquiring the tools needed to better understand the resident rights guaranteed by law that your loved one should be receiving as a long-term care facility resident. Each state in this country has a LTC Ombudsman program. Get acquainted with their mission of advocating on behalf of vulnerable adults and contact your local program to receive help in assuring optimal care for your loved one.
The heading from an Associated Press story by Matt Sedensky, “Who’s going to take care of our aging population?” should wake ALL of us up; not just us Baby Boomers, but ALL of us because at this stage of our world’s existence, no one has created a magic elixir that cures old age and dying.
Talk to anybody who is in med school, or considering med school, ask them what specialty they would like to focus on and you’ll hear: orthopedics, pediatrics, heart disease, cancer treatment – all worthy fields but I would venture to guess that not one of whom you ask that question has said, Geriatrics or Senior Health. “What about geriatrics?” I ask them. “We’re living longer so you’ll ALWAYS have a job taking care of a civilization that’s fighting to stay alive as long as it can!” They don’t buy it, especially since Geriatricians are one of the lowest paid medical specialties amongst the medical community.
Ugh! Who wants to deal with the wrinkly, saggy, hard-of-hearing, loud complaining geezers among us? Not very many according to the linked article above. According to Mr. Sedensky’s research, there is roughly one Geriatrician for every 2,600 people 75 and older. No wonder people can’t find a doctor who specializes in Senior Health! I facilitate an Alzheimer’s Caregiver support group in my town wherein these family members expound on their frustrating efforts to locate a doctor who: a) will spend the time needed to have a productive appointment with their aging parent; b) who knows enough about elder health issues to suggest a treatment that will provide quality of life for the patient; and c) who has a medical staff that is sufficiently trained to interact with their elderly patients. Unfortunately, the General Practitioner or Internist quite frequently provide the same treatment, and the same method of communicating, to their elderly patients – even those with Alzheimer’s or other dementia – as they do their patients in their 20’s thru 70’s. That just won’t cut it.
Older patients have more complex conditions – and more of them. If a medical professional isn’t accurately trained, he or she might discount an elderly patient’s symptoms as those expected during the normal aging process and therefore offer no effective treatment. “What can you expect at your age Mrs. Jones? Be glad that you’ve lived this long!” I know – that sounds really callous – but I dare say too many elderly patients are treated dismissively, and as a result their quality of life decreases greatly.
Think about it my fellow Baby Boomers. Are you willing to be dismissed just because your doctor doesn’t know what the heck he’s doing? I know that all of us have been to doctors who we’ve “fired” because of their lack of understanding and/or their failure to provide proactive treatment. The vulnerable adults among us might not realize that they have choices. They might not feel confident enough to challenge the highly educated medical professional to whom they have entrusted their lives. Who loses in that equation? We all do. If our aging relatives don’t have appropriate medical care options at this time in their lives, why do we think that there will suddenly be an influx of Geriatricians to treat us when we’re their age?
Maybe this is a lost cause for us but it doesn’t have to be that way for those coming up in the aging ranks behind us. What are your thoughts about this glut of Senior Health professionals? How can we hope to live in a world where quality of life – something we value greatly – is an unreachable, yet much desired goal?
An epidemic has taken hold of this Nation. Adults 70 years or older are being infantalized. Adult children have decided that their parents can’t do anything without their guidance. Service employees, e.g. restaurants, retail store clerks and the like, feel compelled to talk down to their Senior customers. Caregivers in long-term care (LTC) facilities further degrade the residents with baby talk. These residents downsized their living space; don’t downsize who they are by treating them as anything other than who they are: intelligent adults.
Only you can put an end to this epidemic. If it is not eradicated by the time you reach the Senior Citizen age, you too will be subjected to its horrors.
Mom moves into your house because of a financial or medical reason, and suddenly Mom has no say in what goes on in her life. Everywhere she turns, her son and daughter-in-law are bossing her around in the guise of trying to do what is best for her. Mom wants to stay up late reading or watching TV and she’s told she should go to bed. Mom wants to do this activity, or that activity with friends outside of the home and she’s told not to leave the house because the son and daughter-in-law want to make sure she doesn’t get into any trouble.
Your Mom raised you and somehow you turned out o.k. She must have been a good parent, teacher, guidance counselor, child supporter, you name it. Just because she is living under your roof doesn’t mean she’s lost her right to have a say in matters that go on in the household. Ask her opinion from time to time. Let her somehow contribute to the functioning of the household, e.g. day-to-day participation in household functions, helping you with decisions you’re making about your own lives. Doing so will restore her pride and make her feel less superfluous. It’s quite o.k. to be concerned about her well-being – you should be – but you can do so without suffocating her.
Why is it that wait-staff, retail sales clerks and the like feel an immediate need to speak super loudly to a Senior citizen customer? In my work with the elderly, I made this very mistake by talking loudly to a LTC resident I had just met. She finally interrupted me, put her hand on my knee and said, “Irene, I’m old; not deaf. Please stop yelling at me.” So simply lower your voice and don’t call her a pet name such as “Sweetie,” “Hon,” etc. I’ll never forget my mother’s phone call to me many years ago when she was barely over 70 years old. She went to the Dept. of Motor Vehicles to renew her driver’s license. After filling out the paperwork and getting her photo taken, it was time for her to leave with her newly issued license. The DMV clerk then said quite loudly, “Now Sweetie – before you leave, make sure that you have everything with you that you came with.” My mother called me that evening, both angered and in tears, bristling at the way in which she was treated. In my mother’s eyes, the DMV clerk downsized her intelligence and abilities and that thoughtless act forever changed my mother as a result. Please treat your Senior consumers with respect and with dignity. They know they are older than you are – you don’t have to remind them of that fact with your ill-placed attitudes and gestures.
When I was 58 years old, a couple years ago, I picked up some items at my local grocery store and used the self-checkout counter to purchase my groceries. As I was leaving the store, the retail clerk said, “Thanks Dear!” A male customer who was older than me also went through the self-checkout at the same time but that retail clerk didn’t say a cutesy name to him! Oh Boy – she didn’t know what she had just started. I didn’t make a scene. I left the store, wrote a letter to the manager and included this blog entry/article with a suggestion that he update his store training to include my suggestions about how to treat Senior Citizens. He wrote me back to thank me and stated that he planned to provide updated sensitivity training to his staff. BRAVO!
Professional LTC caregivers.
Oh boy – I see this a lot. Caregivers who, God bless them, have a job that not many of us would willingly perform – especially at the low hourly wage at which they are paid. I admire you and I respect you. You’re a better person than I because I don’t have what it takes to do what you do. But please address your patients/residents by their given names. I would even go so far as to suggest that you call them by their surname until they give you permission to use their first name. “Good morning Mrs. Smith. It’s so good to see you today!” That’s a far more respectful greeting than the following: “Good morning Sweetie Pie. Let’s get you ready for breakfast, shall we Hon?” YUCK! God help the person who addresses me that way when I reach my Senior years. I’m a friendly person at heart, but I too would bristle at any condescending treatment directed towards me. (And considering how I reacted to the cutesy name directed at me in the supermarket a few years ago (above) I may not be quite as civil in my later years.)
BOTTOM LINE FOR EVERYONE CONCERNED. These Senior Citizens with whom you have contact survived the Great Depression and at least one World War. Surely they have the ability, and the right, to be treated with respect and given the benefit of the doubt when it comes to making their own personal decisions. Don’t take away their ability prematurely. Eventually they may not have the ability to function independently, but it doesn’t do them any good for you to hasten the time in which that may happen.
Do you feel as though you don’t visit your loved one often enough at the long-term care (LTC) facility in which they live? Try to acknowledge that guilt is a feeling that may not necessarily reflect an accurate reality of how attentive you are towards your loved one.
The local caregiver.
Many people have expressed their concerns to me that they’re just not doing enough for their loved one who lives in a LTC facility. Even when a caregiver visits Mom several days a week, the caregiver still feels guilty for not making more of an effort to be there for her.
Guilt is a valid feeling – I believe all feelings are valid – but the feeling of guilt may not accurately reflect what is going on. Let’s face it, most of us are hard on ourselves. The old adage, “we’re our own worse critic” came about resultant from generations of people who unfairly beat themselves into the ground.
At a recent gathering I attended, a woman expressed how guilty she felt for not visiting her mother more often than she thought appropriate. Another person, also a caregiver, suggested that this person ask herself whether or not she felt she was doing the best she could in this situation. “If you are, then perhaps your feeling of guilt is based on emotion rather than reality.” Whether five visits a week or one visit a month – if that’s the best a person is able to do, then it’s sufficient.
Some of us caregivers simply need to cut ourselves some slack. Even when the loved one we’re visiting has no concept of the passage of time and is not able to discern whether they’ve been visited as recently as the last hour or as long ago as last year, we still berate ourselves for not being there more frequently.
Caveat: I need to add that even if your loved one doesn’t a) recognize you, and b) can’t quantify the passage of time, you are still a wonderful addition to that person’s life. No staff caregiver can take your place when it comes to providing a loving presence for your Mom who lives in a facility. Just being there with a smile, a hug, and speaking words of compassion can do wonders towards brightening Mom’s day.
The long-distance caregiver.
My biggest role as a caregiver was that which I performed long distance for my father who lived in a dementia unit in a Southern Oregon assisted living facility. I felt like I was doing something truly valuable for him while I was there but as soon as I boarded the plane for Seattle the guilt enveloped me. Usually, the first night of my return was spent crying because I felt I had been impatient with him, or I acted flustered when I had to answer a question that my father had already asked me no less than two dozen times prior. I relived every moment of my visit, criticizing this and that about what I did, or didn’t do. I was a wreck. I had to talk myself into believing that dad did have a good time and dad was genuinely happy to see me, and by golly, I didn’t do that bad of a job as a caregiver daughter.
I could then relax knowing that he was being well-cared for in my absence; my visits augmented that care, and I could rest on that fact rather than falling back on my guilt. The NY Times article, Being There and Far Away sheds some light on the long distance caregiver’s experience. I hope you’ll take the time to read the article as I believe it will touch on some topics that all caregivers may experience.
As I mentioned in my Blog entry, Deathbed Promises and How to Fulfill Them take a deep breath and shed the mantle of guilt you’re wearing. It doesn’t do you any good and it gets in the way of you being the best caregiver you can be. Cut yourself some slack and don’t be so hard on yourself.
Do your best – that’s all that is required.
My recent blog, “Caregiving: The Ultimate Team Sport” assumes the person providing care for a loved one has a wealth of family members upon which to draw for support. When that is not the case it can be difficult to find willing team members to provide that support. This article provides advice to the solo caregiver and to his/her friends, business associates, neighbors, and community contacts.
CAREGIVER: BE BOLD – ASK FOR WHAT YOU NEED.
Those people with whom you have contact probably know that you’re the only one carrying the ball when it comes to caregiving but they can’t possibly understand the degree of difficulty you’re experiencing. Assuming that to be the case, your friends, business associates, and neighbors may not feel the need to reach out to you with assistance. Now is the time to be very transparent with them and tell them what you need.
DINING ALONE IS A DRAG – NOW’S THE TIME TO ASK FOR WHAT YOU WANT.
There is no shame in inviting yourself to dinner. If these are true friends/acquaintances of yours, they will welcome you into their home. Once you’ve invited yourself a couple times, true friends and valuable neighbors will start to invite you into their dining room on an ongoing basis. Besides, they’ve probably been wondering what they could possibly do to help you out in your situation and you’ve just presented a very easy way in which they can do so. Heck – they’re going to cook dinner for themselves anyway; one or two extra people aren’t going to throw a huge wrench into their meal plans.
ATTENTION WELL-MEANING FRIENDS & NEIGHBORS!
I think the rule of thumb in these situations is to assume that your friend the solo caregiver needs a hand with something, so ask him what he needs. Let’s look at the difference between the following offers of assistance.
- “Hey Sam, call me if you ever need some help.”
- “Hey Sam, could you use a little extra help around the garden? I’m all caught up with my yard work and would like to help you in any way I can.”
- Hey Sam, we always cook for a crowd and always have some leftovers. I’d like to give you some leftovers in disposable containers that you can freeze and use any time you don’t feel like cooking for yourself.”
In the 1st example, you’re leaving it up to Sam to feel comfortable enough to inconvenience you (in his mind) with a request for help. You’re basically forcing him to ask for help. In the 2nd and 3rd examples, you’ve given Sam an offer of tangible, definable assistance that shows that you really mean it when you say you’re willing to help out. If neither of those offers fit within Sam’s current needs, you’re still making it easier for him to ask for help with something else: “Wow Larry, thanks so much for your offers but what I could really use is help figuring out the health insurance issues that have kept me awake at night. How about having a beer with me, and between the two of us, maybe we can make some sense of this mess in which I find myself.”
Friends, work associates and neighbors – your solo caregiver friend needs help and you could be just the right person with the skill that he needs. Some day you may find yourself in a similar situation and will know first hand how difficult it is to be a solo caregiver. If it takes a village to raise a child, it must take at least that to help someone with the burden of being a solo caregiver.
A team is only as good as its members. If the playbook isn’t carefully followed, success is unattainable.
The scenario for this article centers around care for Mom. It doesn’t matter if Mom is still living at home and cared for primarily by one of her adult children OR Mom is living in a care facility receiving care for her day-to-day needs outside of the home. Either way, the brothers and sisters of this caregiving team are in for the challenge of their lives. What follows is a simple, yet complex, listing of destructive traits that could get in the way of the family’s caregiving goal. All definitions are directly from the Oxford English Dictionary, 11th Edition, 2004.
- EGO. n. a person’s sense of self-esteem or self-importance. Brothers and sisters, please check your egos at the door. The exercise of one’s ego is so self-involved that the input of others, most likely controlled by their own egos, clashes with an individual’s perspective. Acknowledge that egos are front and center, but either check them at the door, or put them high up on a bookshelf to be retrieved at a more appropriate time, and work together for the common good, not one’s own good.
- SELFISH(NESS). adj. concerned chiefly with one’s own personal profit or pleasure at the expense of consideration for others. I’m seeing a trend here. Ego and selfishness go hand-in-hand and truly have no place in a team dynamic.
- COMPETITION. n. the activity or condition of competing against others. A successful sports team does not compete against its own members – it saves that for its opponents. Your brothers and sisters are your allies, not your opponents, so you will all benefit from considering each other as such. You want the same thing – the best care experience for your mother – so your common goal will be more effectively reached when all of you play on and for the same team.
- SENIOR(ITY). n. a person who is a specified number of years older than someone else. Just because you’re older than your sister doesn’t mean your input is more valuable than hers. Your younger siblings are just that – they’re younger, not stupid. I know that sounds harsh but I’ve seen this time and again where siblings maintain the same perspective of their childhood sibling relationships and it becomes a barrier towards moving forward as adults. Once you reach a certain adult age, those differences no longer exist. It’s hard to break away from the age hierarchy paradigm, but break away you must.
- SHARED RESPONSIBILITY. You’ll rarely find a family that carries the caregiving burden equally. Some members will do more than others, either by virtue of their proximity to Mom, and/or due to their abilities. But a greater percentage of tasks does not necessarily equate to a greater percentage of input regarding Mom’s caregiving. Arguably one could say, “You don’t care enough to help out so we don’t care about what you have to say.” One could say that but doing so is counterproductive.
I list the above traits because they can be very destructive when complex issues of aging and caregiving come into play. Imagine trying to come to a consensus of opinion regarding an appropriate level of care for Mom at any given time, or managing the financial dilemmas often inherent with the caregiving process; or the emotion-packed subject of end-of-life issues. Respect for each others’ opinions will go a long way towards paving the road with fewer speed bumps.
A caveat: I acknowledge that some family histories are far more complicated, and more dysfunctional, than others. Because of the unhealthy years that many children have experienced growing up, far more is on the table when working with one’s siblings. In those circumstances, a third-party unbiased counselor can be a valuable addition to the care team.
My question to you wonderful caregivers out there who have wrestled with this caregiving team challenge: how did you iron out the difficulties, or did you?
If you do not have any family members, please look at my article Solo Caregiving.