I am so pleased that I FINALLY figured out how to post someone else’s blog entry and I do so with this one by Lark Elizabeth Kirkwood. How wonderful that Lark was able to have that musical connection with her father at that time in his disease. One of the last songs I sang to my father, a couple hours before he died, was “Aloha Oe” which is a good-bye song in Hawaiian. I know he heard the song as he rode on the wave of departure from this Earth. Reading Lark’s many posts about the positive effects of music on those with dementia or brain injuries is so timely as I am still reeling from the positiveness of Diane Sawyer’s 20/20 program on ABC that was broadcast earlier this week. Her story of Gabrielle Giffords and Mark Kelly was inspirational on so many levels. Music had, and continues to have, an AMAZING healing effect on Congresswomen Giffords recovery from that horrific gun shot injury on January 8th, 2011.
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?
Imagine, if you can, sitting next to your spouse of 25 or more years, and experiencing for the first time that she no longer recognizes you. As a matter of fact, she’s quite scared of you, fearing eventual harm, and backs away, even screaming, because you’ve become a menacing figure in the room. Or your father, who you have diligently visited at the facility several days a week for a couple years; he looks at you with a questioning glare and asks, “Who are you? Why are you here?”
You can’t imagine this scenario unless, of course, it’s happened to you. I’m talking to you, the new-found stranger in your loved one’s life, in the hopes of softening the blow that the above scenarios have landed on you.
Oftentimes during the course of our loved one’s dementia, we’ve managed to find the humor in some of the ongoing episodes, e.g. observing your wife as she stands in front of a mirror, carrying on a one-sided conversation with her new BFF; or your husband’s acceptance of you as a nice lady and all (even though he doesn’t recognize you as his wife), but he tells you he’s not gonna have sex with you because he’s already married; or perhaps you’re admiring the outfit your mother has chosen to wear for the day, only the bra and panties are worn on the outside of her blouse and pants and it’s time to take her to church! Kind of funny, right? But these odd behaviors take on a whole different light when, by their very nature, they cut you off from the loved one with whom you have shared so much history.
I first learned that my father no longer recognized me when I walked into his Oregon hospital room – he had been admitted with an ongoing prostate issue – and after spending a good portion of the day with him, he stood up to shake my hand and said, “Well Jim, it was nice of you to drop by but I have things to do.” Needless to say a) I’m his daughter; and b) my name is Irene. My 89 year old father was five years into his dementia by that time – and as it turned out, only one month away from dying – but the good news is that I had just experienced a really wonderful day with him and I felt very close and in-tune to him.
Did it feel weird for him to call me a name not mine? You betcha – especially since it was a male name – but let’s face it, my hair is pretty darn short so maybe I reminded him of a friend of his and that’s the name that came to him first. Unfortunately, his incorrect identification of me only happened once because the next time I saw him, he was in a coma dying from prostate cancer. What I would have given for many more opportunities to have passed off as his friend Jim. It was not to be.
The loss we experience with non-recognition. I think the biggest loss that is felt by family members is that their loved one no longer shares the same family history. No longer are we able to talk about old times; no longer can we reflect on the road trips, the Holidays, or the day-to-day memories that make a family unique. Nope – we’re on our own and even if we have other siblings with whom to share these stories, it’s just not the same. Imagine being the only child and your last remaining parent no longer has the ability to be a part of the stories and histories that keep your legacy alive. That’s a difficult pill to swallow to be sure. There are no amount of condolences, hugs, and “I’m so sorries,” that will take away this very real pain.
I think the only gift I have to offer those experiencing this scenario is to say that only YOU can provide the love that your father/mother/spouse/sibling can receive. A caregiver can’t take your place; a well-intentioned volunteer can’t take your place. Only you can transmit the familial love that will make a difference in your loved one’s life.
Whether your name is Jim, or sweetie, or heh-you: please know that you hold the only genuine love that can make a difference in your loved one’s life. If you can believe that – your visits might be a little less painful when you’re no longer the acknowledged spouse, adult child, or sibling of your loved one.
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.