Posted on | March 8, 2013 | No Comments
How many of us find ourselves too busy to really care? I recently helped a client identify a care community for a loved one who experienced a long list of health complications. This was a rather long journey of identifying communities, having assessments completed and receiving declines because the care needed was too significant for available care community staff or there were unexpressed, hidden concerns. .
As one might imagine, after multiple declines, the client became despondent. As a result his interactions and behaviors with potential care staff became impatient and filled with frustration because his desire for care of his loved one appeared to be met by people who were too busy to care, who lacked knowledge or lacked any interest in being helpful.
In caregiving, competing interests represent complications for professional caregivers, family caregivers and care advocates. Communities decline difficult patients or family members they sense to be potentially difficult or excessively time consuming. Family caregivers want the best for their loved ones and lack understanding of minimum standards of care, community rules, regulations or constraints which more than often are not fully explained at a level family caregivers are able to understand. Care staff is often perceived as too busy to care when caring is a main component of their job description.
The goal of care advocates is to advocate for family members and to simplify or ease concerns of professional caregivers who might be hesitant to provide or offer care. It’s sometime a precarious situation because we realize the complexities and support the best interest of the family and the individual in need. We’d rather receive an explanatory and respectful decline rather than have professional caregivers agree to provide care and then fail or disappoint. Yet there are situations where complications exist and we need professional caregivers who agree to go the extra mile for our client with special or unusual care needs
We work in an imperfect healthcare system. As an advocate for families and care recipients, I am at times met by community staff that walks the other way when they see me visiting their communities or who fail to return phone calls because they’re having a busy day and know I will ask questions that may take more time than they have available.
This happened recently when this same client was accepted by a community and then suddenly declined. The admissions person, who I have known for more than a year, told me he didn’t want to take my call because he knew I’d want details and explanations and this would take time he didn’t have on this particular day. I certainly hope that his response to me was not reflective of the way he would respond to a concerned family member as it lacked any semblance of compassion or caring.
If we in the caregiving industry don’t take time to support family caregivers who will? We realize there is a solution for every situation that at times does require investigation, questions, details and explanations from care staff willing to be patient with our inquiries on behalf of clients of The Care Navigator.
Professional caregivers, too busy to care or rushed for time, easily intimidate family caregivers. The reality is that a simple explanation offered by care staff appropriately trained and knowledgeable offers comfort to family caregivers. Based on my personal experience, this type of response occurs on an infrequent basis. More often family caregivers are left feeling frustrated and uncertain.
Are we as leaders in the care industry too busy to train appropriate responses, behaviors and customer service in care staff? The lack of professionalism in the healthcare industry is at times comparable to the level of professionalism of an automobile salesman, pushy telemarketer or a realtor looking to sell a decrepit house to the next willing buyer.
If we seek to be a caring industry we must take the time to develop caring individuals willing to take the time to support families and caregivers and to express caring ourselves. I’m often asked if we, The Care Navigator, are “busy”. My response? We’re never too busy to help another client or family, it’s what we do because we’re not too busy care.
Posted on | March 8, 2013 | No Comments
My niece recently posted questionable information on the internet that appeared on my Facebook page because we were friends; after reading the content I immediately and secretly “un-friended” her. I didn’t want the information in her post to appear on my page with readers assuming I approved of her conduct. Maybe I’ve become prudish in my old age, but I believe there are too many posts that simply provide too much information and photographs that belong only in a private photo album rather than on the eternal library of the internet.
That being said having a virtual life connects us to others in ways that can be beneficial, preserve relationships and be time efficient. While I’d never think of making a phone call to a friend at 10 o’clock at night, I might send an email letting them know I’m thinking about them that they’ll receive the next morning. Networking sites like LinkedIn are great for connecting with business colleagues and keeping track of the whereabouts of colleagues in our industry, who as most of us know, continually change employers and positions. Facebook is a great vehicle for tracking down long lost grade school, high school and college buddies and if you’re a business for creating a group of friends and supporters.
But, let’s not forget that information we post is also used by potential employers, internet predators and thieves who might find it very interesting that you’re posting vacation photos on Facebook. Might you NOT be home? What a great way to let burglars know that NOW is the perfect time to break into your home.
Recently several online email provider accounts were hacked. How many of you have received emails from friends through Yahoo that you eventually realized were SPAM sent from some annoying hacker in Russia or Australia. It can be challenging to know which emails to open and which emails to delete. My advice, change your passwords often and don’t make them easy to decipher. Use capital and lower case letters, number and symbols that are at least 8-10 characters. Don’t use the name of your spouse, your children or your pets especially if you you’ve shared this information elsewhere on the internet. Protect your virtual life as you do your physical life and keep private information private.
Then there’s the items we collect and purchase online. What about I-tunes, downloaded books, online games and family photo albums. What happens to these when we die if we don’t leave a list of passwords accessible somewhere? Imagine how many personal online accounts exist of persons now deceased. This is an issue for online companies and lawyers to settle. But at least for now take care to protect your virtual life and enjoy connecting with business colleagues and friends. Connect with The Care Navigator on Facebook.
Posted on | March 2, 2013 | No Comments
If you have a loved one who is a resident of a long term care community does it seem that morning care including getting out of bed, appropriate hygiene, tooth brushing, toileting and dressing is hit or miss? If this is your experience you may be right at least 40% of the time. Research completed in long term care communities, also called nursing homes, indicates that residents who require greater than average physical care often miss morning care routines.1
I attest that performing morning personal care is time consuming. How long does it take for us to get out of bed, shower or bathe, get dressed and begin our day? For most of us this daily routine consumes up to an hour of time. In long term care communities where residents outnumber staff, this routine is even more challenging and at times one or more components of getting out of bed, using the toilet and getting dressed is missed in the morning and postponed until later in the day.
How many individuals working in long term care dread working mornings because of time pressures, performing multiple components of care and every resident requiring attention? Time and staffing indicate that not everyone can receive care at the same time especially if preferences indicate 7 a.m. is the perfect time to get up and out of bed. What about those individuals who want to rise earlier and those who want to sleep in? Is it possible to accommodate the wishes of every resident?
Resident behaviors and different responses from day to day complicate care schedules. Residents with memory loss when asked a question often immediately respond “no”. These individuals are easily bypassed relative to morning care routines because the time involved in persuading them to agree is too time intensive when a large number of residents who will say yes are waiting for care. Another resident, who may exhibit negative behavior, refuses to get out of bed and is viewed as exerting a “patient right”, thus left to remain in bed until care staff completes their morning routine and has time to return sometime not until after lunch. Thus it’s not surprising that many long term care residents spend at least 18 hours a day in bed or substantial amounts of time sitting is wheelchairs lined up in hallways or in front of nurses’ stations.
Some long term care residents (without memory loss) report that they have become “used to” not being asked their preferences. For example, rare are questions of “are you ready to get up and get going?”, ‘what do you want to wear today?” or “may I help you to the bathroom?” are rarely if ever asked. I had a client who pressed used the call button for mobility assistance to the bathroom and who was left sitting on the toilet for over an hour until care staff walking down the hallway heard her yelling for help. Other clients have been left lying in bed for extended periods of time in soiled undergarments.
Residents requiring continence care should be checked and changed every 2 hours at a minimum. This is no different from the idea of a 2 hour toileting schedule for an individual with memory loss to avoid the occurrence of accidents.
Complaints by residents are seen as a futile effort. Fear of retribution by care staff is an often expressed resident reality. Older adults also don’t want to be seen as a bother or to get staff they see on a daily basis into trouble with management. The absence of expressed concerns results in supervisory and care staff believing that resident care is acceptable and appropriate when the opposite is true.
If those of us working in the industry really care about providing care what can we do differently? Population estimates for the next 15 years indicate that the number of residents living in care communities will grow to exponentially as baby boomers retire, age and require care. Long term care staff assumptions that 40% of resident morning care routines are acceptable without verifying this assumption with residents is irresponsible and ethically and morally faulty.
If your family member is experiencing sub-standard care in a community speak up or retain a care advocate to provide support on your behalf. If you work in a care community and see a sub-standard resident care, speak up on behalf of the residents who are likely fearful of speaking up for themselves. It’s our responsibility to advocate for those vulnerable and less able.
1 Simmons, Sandra F. et al., Resident Characteristics Related to the lack of Morning Care Provision in Long Term Care. The Gerontologist, Vol. 53, No. 1, 2013 pp. 151- 161
Posted on | March 2, 2013 | No Comments
Caregivers are happy, energetic, helpful people ready to jump in to lend a helping hand. Caregivers are individuals who find it impossible to say no and who refuse to manage their schedules but instead allow schedules, requests and demands to manage them. It’s this inability to say no in addition to readily accepting additional caregiving responsibility that results in caregiver stress and burden. After all who wants to admit we can’t do it all? Not us.
I often hear “ I’ve never been sick in my life“ or “I’m never sick” from caregivers as if what they’re experiencing, not feeling well, is a shock or a surprise. These statements are the first in a long sequence of denial and faulty beliefs about the individual invincibility of caregivers. These statements are a reality check that the rapid recovery, the ability to bounce back quickly from health issues occurring in our youth is a memory of the past. “I’m never sick” is a reminder that we can no longer abuse our bodies by not sleeping, not eating properly, not exercising and not paying attention to stress that affects our bodies. It’s a reminder that remaining healthy and resilient as we age now takes effort and work.
Caregivers experiencing “ I’ve never been sick in my life” tell me that they don’t have time to attend to their health or go to the doctor. This is when I pose the question, “then you do have time to be sick?” A caregiver recently told me that caring for her mother took such a toll on her health and wellbeing that she retired from her job. To make sure I understood her statement, I asked, “You retired from your job so you could spend even more time being burdened by caring for your mother?” The caregiver smiled back at me and nodded her head realizing that this may not have been the best choice. Hindsight is 20:20.
Caregivers are irrational. We make excuses and poor decisions rather than taking a step back and taking responsibility for our actions or inactions or heaven forbid do we ever say no to requests to add one more item into our already over-scheduled schedules. We do this because we lack the skills to cope with our day to day reality. We continue to allow our schedules to spiral out of control.
Caregivers find working on their own health issues too much work, we’re not that sick — yet. You’ll rarely hear a caregiver say that caregiving is too much work. That is until the caregiver is forced to take a step back and look at the current situation because of a now serious health issue that can’t be ignored or because of repeated statements from loved ones of concern that are now final demands instead of gentle caring reminders. How many relationships and marriages are ruined because of irrational caregivers who continually insist they have to run errands, grocery shop, clean house, pick up prescriptions, pay bills or help with other tasks?
How many of us realize that when we’re not feeling well we’re not as effective in managing our day to day lives? Physically we’re slower. Mentally our brains feel tired or sluggish. We make poor decisions because we’re distracted or overwhelmed. And if we’re a caregiver, how beneficial are we to loved ones requiring our full attention? We’re not. Rather than being a positive force we’re a sinking lead weight. In these situations both the caregiver and the care recipient are at risk.
Caregiving doesn’t have to be stressful and burdensome unless we allow the role to affect and consume our entire life. Both part time and full time caregivers easily fall into this trap. Caregiving is like quicksand. Only when caregivers are neck deep and drowning are we willing to accept help or realize that something in our daily scheduling and planning must be altered. Change is challenging.
Hmmm, how could this be? It is possible that caregivers are as stubborn and unyielding as the person for whom they now care, who initially refused all offers of change in routine, care and assistance? Similar to innocent statements of “I hope I never become like my mother”, caregivers have become the exact person who previously angered and frustrated their daily lives. The caregiver has behaviorally transformed into the frustrating and irritating person for whom they provide care. Caregivers become their own worst nightmare, especially when they need care.
How do we as caregivers begin to change our behaviors? By first recognizing that we’re not invincible, that the experience and advice of others who may have walked in our shoes is valuable. By acknowledging that it’s not possible to do it all if we hope to preserve our health and our relationships. By asking for and accepting help and support, similar to the actions of the person for whom we’re providing care and by realizing that life does come full circle. If you’re a caregiver ready to acknowledge outside support may be helpful, request a care navigation assessment to provide recommendations and options and seek other beneficial support.
Posted on | September 8, 2012 | No Comments
Caregivers deserve kindness, support and empathy. That’s often the opposite of a caregivers daily experience. The general public isn’t drawn to sad, unexpected or unpleasant events in life. Sad events happen only to other people: a diagnosis of cancer, the death of a parent or loved one, an injury from a car accident. If caregivers talk about negative or unpleasant events, friends or acquaintances turn away because the subject matter is uncomfortable and they don’t know how to respond in words.
I can clear a room in a few minutes when I start talking about the realities of caregiving with non-caregivers. The looks on their faces and their body language tell me how uncomfortable they are by the subject matter. Yet, they’re the ones who asked what I do for a living and then minutes later regret the question. Sometimes I’ll run on a bit about the subject of caregiving, on purpose, just to see their reactions. I feel the rejection many caregivers experience when they relay their stories and feel the sting of isolation when they realize the other person has no interest in their experience.
It’s a similar experience to asking someone how they are. Most people politely say “great” and the conversation moves on. How do we feel when someone actually gives an honest answer and a troubled story ensues? Many of us are sorry we even asked because the response isn’t what we expected and even though we asked, we didn’t really want to hear any response but “great”.
Most people would rather spend time in pleasant endeavors that are positive and attractive like going to a movie, watching a stand up comedian, going to the gym or getting a massage. Persons who become caregivers feel overwhelmed and isolated because of the extent of caregiving activities that take up entire days and weeks and months of their lives. Caregiving is an unknown. Caregivers hide their feelings, and sometimes even their caregiving experience because they don’t want friends to know what’s realy happening in their lives.
Spousal caregivers, if children are not available, can become prisoners in their own home if they are caring for a loved one who requires constant care and cannot be left alone. Many adult children caregivers give up their homes or careers to move in with parents to care for them. Caregiving quickly becomes a 24 hour a day job with little relief.
Caregiving isn’t a role we expect in our lifetime. Caregiving is work, it’s stressful. Unless you’ve been a caregiver you may not know how to respond to a person who is a caregiver. When the subject is mentioned in casual conversation, non-caregivers become speechless and wish they could run the other way. Non-caregivers don’t want to hear about the experiences of caregivers; they think caregiving will never happen to them so the conversation isn’t relevant. Non-caregivers avoid the unpleasant subject matter and eventualy stop visiting and calling their now caregiver friends. Little do they realize, they one day will likely be a caregiver.
At one time or another in our lives we all will become caregivers. The reality of life is that we will all die. More than likely we’ll lose our parents before brothers or sisters. If you meet a caregiver, realize that a few words of kindness and empathy go a long way. Realize that even if this isn’t your current life experience, you one day may be a caregiver whose day may be brightened by a kind word or a person who listened, if even for only a few moments.
Posted on | February 19, 2012 | No Comments
Emergency Room Visits – Many are Unnecessary
Emergency room visits for many older adults are unnecessary because they are not true medical emergencies. Unnecessary emergency room visits add cost to the already overburdened health care system and drain money from savings and retirement accounts of older adults. Yet, when older adults don’t feel quite right, 911 is the first number they call.
What are the most common causes of unnecessary emergency room visits? Urinary tract infections are one of the reasons older adults end up in the emergency room. Caregivers see their loved one experiencing mental confusion or strange behaviors and have no idea that the diagnoses can be as simple as a urinary tract infection. Urinary tract infections are extremely common in individuals with memory loss, dementia or Alzheimer’s Disease and can be easily diagnosed and managed with a regular physician visit rather than going to the emergency room.
Other common reasons for unnecessary emergency room visits for older adults include: dehydration and/or poor nutrition, bacterial pneumonia, high blood pressure, chest pain, asthma, poorly managed diabetes, congestive heart failure, COPD and dementia and associated behaviors. In 2012, the Medicare co-pay for a hospital admission from the emergency room is $1156. The co-pay for day 20+ in a skilled nursing home is $144.50 per day. Older adults and their families are shocked to learn that Medicare doesn’t pay for all types of care including emergency room visits and rehabilitation.
Being admitted to a hospital emergency room and having subsequent treatment is extremely expensive for older adults in more ways than the obvious. After an emergency room hospitalization or nursing home stay many older adults are less able to continue to live independently and to care for themselves. Hospitalizations often result in significant cognitive and physical declines for many older adults who also experience delirium. After a hospitalization many older adults find it necessary to move to assisted living; some remain in nursing homes for the remainder of their lives.
Rather than rushing to the emergency room, it is important for older adults to be proactive in their health care. Medicare does not pay for care oversight and supervision that may prevent unnecessary hospitalizations and reduce greater out of pocket costs to consumers. Many older adults are unaware of services that can save money and improve quality of life. This includes regular and ongoing medical appointments with physicians. Care management and oversight helps older adults avoid emergency room visits and health emergencies and is a service offered by The Care Navigator. Care management provides oversight and an advocate to ask questions of physicians and to coordinate follow ups for care, avoiding unnecessary emergency room visits.
Many family members miss common signs that loved ones would benefit from care oversight. In addition to the reasons listed above, these signs include weight loss, depression, poor hygiene and a number of other issues. The Caring Generation educates caregivers about caring for older adult loved ones.
It’s time for older adults and their caregivers to become more educated about options to manage health issues. This can only happen if education about available services occurs to eliminate hospital stays and the associated risks of not monitoring health conditions. Informational videos about care options and services are available.
Posted on | February 18, 2012 | No Comments
Caregiving, especially for individuals diagnosed with memory loss or Alzheimer’s, is hard work especially when the loved one receiving care no longer recognizes the caregiver. Many caregivers feel better if they maintain tight control over the caregiving situation — meaning controlling their loved ones’ physical behaviors and actions. In this type of caregiving situation tight control is the opposite of what’s needed.
While visiting with a wife caregiving for her husband, she repeatedly told her husband to sit down, when all he wanted to do was walk circles around the living room and kitchen. She felt it important to regulate everything her husband ate. Including not allowing him to have foods he would actually eat like cookies and ice cream, yet she wondered why he was losing weight. She wanted her husband to read books that he could no longer mentally follow, because previously he read all the time.
In these caregiving situations, control relates more to the wish of a spouse to not lose the person they married. Even though by this time, the person may be physically present but mentally there is little recognition. Wanting to maintain control in caregiving situations where memory loss exists is more about the caregiver spouse grieving the loss of a loved one than the needs of the spouse requiring care. Many times we forget that caregiving is about the person for whom we’re providing care. Caregiving is not and should not be about the caregiver, although boundaries do need to be set about the type of care we are able and willing to provide.
This is where caregiving education is important. Many caregivers care for a loved one with memory loss or Alzheimer’s disease and never become educated or attend a support group. Their actions toward their loved one may be seen by educated outsiders as abusive because the caregiver really doesn’t understand that their actions are resulting in behaviors that are more extreme like anxiety, pacing, crying, wringing of hands and other disturbances.
The Caring Generation provides education for caregivers so that relationships, rather than being burdensome or filled with guilt, remind us that life is precious and time on earth short. There are also many organizations, like The Care Navigator, that provide care coordination and support to caregiving families on a local basis.
Posted on | February 15, 2012 | No Comments
Are you an overwhelmed caregiver caring for elderly parents? Are you caring for a spouse and some days feel like you can’t go on? Most caregivers not only admit to overwhelm, stress, frustration, feelings of hopelessness but also having to manage their own chronic health conditions as a result of their caregiving activities. Many caregivers suffer from health conditions more serious than the person for whom they’re caring. Research shows – caregiving stress kills. My new website features education to help you survive your caregiving journey. Click here to watch a video to help you manage feelings of caregiver overwhelm. http://www.pameladwilson.com
Posted on | February 14, 2012 | No Comments
Many caregivers I meet ask me how they can learn to become better caregivers. In the past I responded with “have you surfed the internet for information?” To my surprise caregivers responded yes — BUT they hadn’t found subject matter specific to their needs. Having difficulty believing this, I did a little internet surfing. When typing in the words caregiving or caregiver, thousands of entries are listed. Add the words “education or support” to the words caregiving or caregiver and fewer sites are listed. The other concern of caregivers is the physical availability to attend conferences, courses or support groups. Difficult when you are caring for someone that can’t be left alone or when at the day you have no extra energy remaining.
Realizing that I may be able to offer a new option, I accepted the challenge of developing an educational website for caregivers with the goal of making it easy for caregivers to access information electronically, any time of day — even if the time of day is 2 a.m. The new website features two areas: free content and a paid membership area. When cataloged, this free information will represent over 700 audio segments, including associated text files if you prefer to read rather than listen. To respond to consumer requests for specific caregiver training, I’ve written segments under the title, The Caring Generation: The Caregiving Roadmap®, and recorded the content on video. This represents the educational paid portion of the website. The education is relevant for both family and professional caregivers. Please share the new Caregiver Education website with professionals and family caregivers.
Posted on | January 11, 2012 | No Comments
Memory Loss Screening:
If you suspected memory loss in yourself or a loved one, would you seek a diagnosis by having a Memory Loss Screening? So many of us don’t want to receive bad news about our health or our future. Others believe that if a loved one has Alzheimer’s disease, why diagnose because there’s nothing that can be done. In my opinion, not diagnosing is like standing on train tracks waiting to be hit by an oncoming train. While a diagnosis of Alzheimer’s disease can’t be changed, there are measures that can be taken to support a loved one and family caregivers if involved. It’s also extremely important to make plans for health care needs and legal plans for powers of attorney so that when the individual with Alzheimer’s disease can no longer manage on a day to day basis, care and oversight will be available. Many times professionals are appointed as power of attorney because there is no family or family lives too far away to be effective in managing care. Whatever your situation, would you rather be prepared or forced to react to a crises each time one occurs?
It is always best to plan ahead when you are able to do so. Planning for your or your parents future needs to happen sooner rather than later. When we wait we often find ourselves having to deal with difficult family dynamics and a much higher level of stress and overwhelm than we would if we planned ahead.
Taking a Memory Loss Screening will allow you to get a better picture of what you are your loved ones future care may involve. There are many wonderful options now available to us as we age. More now than ever before. More is known about aging and how the mind works as we age than ever before. Research and remedies are being announced on a regular basis so that we can plan better and care better for ourselves and loved ones.
Memory Loss Screening seems to something that could really help families prepare for what may lay ahead for them. Having a good plan in place will ensure a much happier and joyful transition as we age.
Please leave your comments below. Have you ever had a
Memory Loss Screening
done? Would you do it?
Let us know what you thing.
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