My name is Jeff Dodson and I reside in Elk Grove, California. While close to retirement, it is not a viable option just yet. Being energetic and in good health, it is my desire to continue working, while, at the same time following a long held passion of mine in writing. In this instance, I wanted to write about what is involved in providing daily care to family members stricken with Alzheimer's Disease. AD is not one of those diseases that brings with it a lot of excruciating pain such as cancer. On the other hand, it is one of the most frightening because it slowly and methodically destroys that which is most dear to everyone: their mind.
Alzheimer's Disease is present within both of my wife's family and my own. Because of it, my wife, Penny, retired from the traditional workforce five years ago and took on the responsibility of care giving with her family. I have continued working, but also joined my wife in sharing the care giving needs with her folks. In 2009 the health needs of my own parents compelled a more active involvement in assisting them as well as AD became more noticeable
with one of my parents.
The 2009 Report of the Alzheimer's Disease Association disclosed that there are over 5.3 million diagnosed cases of AD in the United States. The number of AD cases doubles every 5 years in people age 65 and older. AD accounts for 60 t0 80 percent of all of the cases of dementia. Age is the biggest risk factor associated with the disease. The California Disease Data Report on Alzheimer's for 2009 reveals that 11% of our nations caregivers or 1.1 million Californians are providing care for Alzheimer or other dementia stricken family members.
These are startling numbers, which will continue to grow as our population ages further. Presently, it is the sixth leading cause of death in the United States. Within the next 10 years, some researchers predict that it will surpass both cancer and heart disease on its way to the number one spot.
My wife and I count ourselves among the 80 million Baby Boomers born just after World War II. The first of our generation will begin turning age 65 in 2011. We count ourselves among the 10 million caregivers who are currently providing unpaid care to a family member or relative diagnosed with AD or another type of dementia. In our case, we provide the care that we can to our family members out of love, respect and devotion to them. I believe that the overwhelming majority of caregivers, active on a daily basis, are doing so for the same reasons as Penny and myself.
Taking charge of the health care and custody of a family member struggling with AD is a formidable challenge. For the person diagnosed with the disease, the prospect of slowly loosing bits and pieces of their cognitive abilities, their lifelong memories and, of not being able to form lasting new memories any more is terrifying and unnerving. In addition, that person can no longer communicate effectively to others about what is happening to them, what they are feeling, or what their wants and needs are. Over the centuries, the thought of "loosing your mind" to any tribe, culture or society scares the living daylights out of all of its members. It is no different in 2010.
In the time that Penny and I have been caregivers, we have experienced a variety of challenges that every caregiver must face when dealing with an AD or dementia family member. While traveling the rocky, slip-and-fall, potholed path that every caregiver must negotiate, we have been lucky. Lucky that is in that we have a close bond between us. The better to be able to vent and let ourselves down with each other. We have also found our own spiritual connection and guiding influences that have brought us a measure of peace of mind in this work. By and large, the threatening specter of depression, which can overcome dementia caregivers quicker than any other, has not come knocking at our door. On this very topic, a Harvard University Medical School report on caregivers found that up to 60% of them struggle with varying degrees of depression. Thankfully, we do not count ourselves as part of this lot although our hearts go out to those who have been enveloped by it.
We have met other caregivers doing the same thing that we are. They are deep in the midst of caring for one or more parents, a grandparent, or perhaps brother or sister. Some maintain a positive outlook on life and have found a healthy ways to experience and release their grief.
Others are going through a mighty struggle in their efforts to generate and maintain a high level of motivation and perseverance necessary to care for a cognitively disabled person every day. For those folks who have no other available, or willing, family members to assist them, the care giving work demands they face can easily begin to look like the Himalayan Mountains.
I have compiled two lists here based upon our experiences that I wanted to share with other caregivers. The first list is what I call the Caregivers Challenges. These are the obstacles experienced by many new as well as veteran caregivers. The second list is comprised of what I have deemed Caregivers Success Traits. While there are a variety of web sites and books now that make this kind of information available, I wanted to offer my own personalized point of view of my experiences as a family caregiver with some humor thrown in as well.
Caregiver Challenges
Stamina: Physical and Mental
Providing care giving attention to an elderly parent or patient suffering from one of the many dementia's requires a lot of effort and energy. Both mental and physical. On many days, you go home emotionally drained and physically spent from your activities. Since neither of our parents are living with us, we have the lucky option of going home to our own place each night.
Many caregivers do not have this luxury. Being able to get up and leave a stress generating environment each day is one form of what I would call "transitional decompression."
We also realize that this lucky option may not last forever. We are grateful that our parents still own and reside in their own homes and will continue to do so for hopefully a few more years. But having one of our parents come to stay with us at some point in the future is a possibility that we have already discussed. In the meantime, we are supportive and doing all that we can to see that our folks remain in their homes as long as they desire to do so and and are capable of doing so in a safe manner.
Usually once we arrive home, my wife and I will either talk over and vent out our frustrations right away, or, we disperse the low-vibrational negative energy while having dinner. This is what I call our shared "conversational decompression." But at least once a month, we come home with "empty tanks." In the realm of extreme fighting sport, this would be the equivalent of what the fans refer to as "tapping out." Fighters who cannot extricate themselves from being pinned with a submission hold, or knocked out, signal their surrender by tapping on the ring canvas. Many caregivers go home after experiencing "tapping out" days.
Yet Penny and I are also fortunate. The amount of hours that we devote to care giving at present averages approximately 30 hours each week. There are others that are compelled to provide 24/7 service to a loved one. For them, there is no break nor relief opportunity to step away from the stress. In this instance, according to a medical professional we know, 24/7 caregivers are forfeiting 5 to 8 years of their life span away as the price of admission for shouldering the brave and selfless duties of a care provider.
Resistance, Anger and Combative Behavior
A family member, at times, and out of frustration, will become resistant, angry, or physically uncooperative in attempts to get them out of bed, getting them back into bed, or during the act of transporting them to a medical appointment. Dressing, changing, or undressing can also stir up some of the struggles just mentioned. Same goes for turning a patient in their bed to change them and getting them in and out of walkers and wheelchairs.
The patient begins to gradually loose their ability to process and comprehend what you want them to do. Their ability to anticipate and sense your actions has also been compromised or erased. In frustration, and, not being able to communicate their disorientation, displeasure or simple fear, they become upset, resistant and angry. They "act out" with the only communication behavior tool they can grasp.
Administering Medications
Administering medications to an uncooperative and recalcitrant patient will test your patience and resolve. This often calls for creativity and imagination. How many ways can you grind up, disguise or hide the taste of a pill or liquid in another food or drink item? Sometimes, just stepping away; stopping momentarily the clash of wills, then returning to the issue 15 minutes later, will often provide you with a completely different and cooperative mood. I call it taking a "lap around the block." Ending a confrontation defuses and relaxes an upset patient.
Feeding A Bedridden Patient
Sometimes your patient is uptight about something and is not interested in eating at that moment. Maybe, the food doesn't taste quite right that day. At other times, they eat everything that you offer without a fuss. A twist that you can also encounter is when the patient eats some of what you offer, then refuses to open their mouth for anything else. Now what are you going to do? Applying the "lap around the block" approach works here as well.
There are also times when you'll go to feed a patient who is stewing about something, and, without warning, you'll have the food or drink spat out on your clothing or face. This will always be the acid test of your sense of humor for that moment!
Tip: Keep a towel close at hand for feeding times. Better to also keep one draped across the front of your patient or person you are caring for too. Let the towels catch all of the "mealtime shrapnel."
Incontinence
The job that usually announces it's unpleasant arrival to your nose first!
Malodorous and messy. It is truly amazing how many times an adult can urinate or poop in a 24 hour period. Cleaning up and changing an adult, basted and coated with bodily waste takes a lot of time to complete. Even with a cooperative patient, this can take 15 to 20 minutes for cleanup and re-dressing. On the other hand, if the patient or person being cared for is in a feisty mood, or wants to struggle with you, make it a half hour or more test of your stamina and endurance as well as a hold-your-breath contest. Sadly, since incontinence means the inability to control the dam, you are sometimes rewarded with an encore project right on the heels of what was just cleaned up.
Every caregiver must find a way to deal with the feeling of self-consciousness about the very personal and private issue of cleaning up after an incontinent patient. The patient is feeling a double dose of embarrassment with your wiping and touching of their private bodily areas. It takes a long time for them to deal with all of their formerly private toilet activities now happening in front of an audience.
Sun downers Syndrome
A substantial number of people who have AD exhibit what is referred to as "Sun downers Syndrome." They become restless and want to go roaming, seemingly aimless, towards the end of the day. The person acting in this fashion appears to be on some kind of bizarre treasure hunt: examining, rummaging and handling everything that they touch or see. Switches, knobs, drawers, appliances, doors and windows all seem to compel testing, opening or investigation.
In addition, some people carry it one step further by shuffling, re-arranging and moving household items, personal possessions, and even items from the refrigerator to other locations that make no sense to the rest of us.
My own gut instinct theory here is this: rummaging and wandering is initiated in an effort by the individual to perhaps find clues or objects that will help them orient themselves, to determine where they are or what is happening to them.
Another behavior or mood that overtakes an AD patient is an often vocalized desire to run away. "I want to go home", or, "I wanna go home now", is blurted out when the patient is experiencing frustration, confusion, or fear. In my opinion, this is code word talk for the patient simply wanting to be the way they used to be before Alzheimer's took control of their life. It's the only thing they can come up with for telling the world, "I want to go back to my life the way it used to be.'
Caregivers Success and Survival Traits
Dump Trucks Full of Patience
Patience, patience and lots more patience. Every day of the week. Imagine what every one's water bill would be like if patience could be added to the water supply like fluoride and chlorine? Whoa Nelly! Every one's water bill would exceed their monthly mortgage payment!
Learning to back off the throttle and let go of my own ingrained, "do it now, I need to be productive and efficient," inner voice proved to be a hard thing for me to let go.
With the economy tanking as it has done over the past 3 years, all of my survival skills in the workplace demanded adaptability, working more productively, and taking on more tasks and duties. Damned if I was going to be let go at work for not performing the duties of 2 or 3 others plus my own desk! So, I was in for a rude shock in thinking that I was going to be able to apply this kind of approach with older, dementia challenged seniors and parents. For them, there is no longer any sense of urgency, no multitasking, no adaptability, nor any kind of machine like efficiency taking place. How can there be? Aches, pains, bladder, bowels, pills and ravaged cognition rule the world of many seniors.
So I smartened up and trained myself to become more compassionate in realizing that our loved ones did not ask to have AD dropped on them like a barrel full of pine pitch. There is no line anywhere of people demanding to be cursed with AD. On the other hand, I can envision such a thing as an "Alzheimer's Refund Desk" with multiple lines in front of it stretching for miles. All of the folks waiting in line would each have a sealed, unopened box labeled AD to be returned; glad even if they could just return the box without a refund.
AD and dementia patients, parents and grandparents have no control over what is happening to them, nor do they desire for it to be happening. Learn to be more compassionate and forgiving, became my new motivating self-talk.
When caring for an aging parent, we easily overlook the fact that our parents are still having a hard time wrapping themselves around the notion of: my kid is not that 12 year old snot anymore, and they are now catching me making unwise, unsafe, ill-thought out choices that I used to catch them at. In short, roll reversal is a rock-hard jaw-breaker for our seniors to bite into.
Remain Flexible and Open Minded
Many of the books written by the AD experts talk of using the tools known as redirection and distraction. When a patient is reluctant or refuses to do something that you expect them to, you can defuse that moment for them by providing them with an alternative or different choice. If the patient or family member is becoming upset or fearful about something, a distraction offered can serve to break the tension with a less threatening choice to consider.
As mentioned earlier, Penny and I have improved our success rate using these techniques to counter refusals, No's, or, "I don't want to."
Learn to anticipate challenges ahead of time. One or two truly tranquil days with brother, sister, a parent, or grandparent does not mean that you are about to begin a long streak. One or more good days is usually followed by one or more setback days. This is the ebb and flow of caregiving and the cycle of Alzheimer's and dementia. Just like your favorite NFL team in season. Hard for them too in achieving consistency.
Strike A Balance
Plan on all of your relationships with others being put to the test!
As AD tightens its grip on your patient or family member, the demands upon your time increase. Time consequently becomes less available to spend with friends and family not affected with the disease. You may find yourself acting stressed and uptight with other family members that you had no problems with before. You may also discover that you have gone for many weeks, neglecting to stay in some kind of contact with them. As a caregiver, a conscious effort must be made to balance your time between your patient, your hobbies, and enjoying the company of others.
Time To Cherish
AD is ultimately fatal. It will continue to be so for some time. Hope is on the horizon but perhaps another 10 to 12 years away. Make the choice of grabbing on tight to those special cherished moments with your patient or family member. Practice noticing and savoring their small modest accomplishments and victories each day. Praise them for every successful little thing that they do or get right. Praise them often. They need to hear this kind of validating reinforcement!
My wife has become a consummate master at this in her dealings with aged AD and dementia patients. No labored effort is too small that she does not take notice of it and offer up praise. This is love and reverence for another in action.
Detach From Your Own Emotional Triggers
Coming from the multitasking, do-it-now work background that I have, generated stress with me every time I encountered a "we are not ready yet" situation on doctor's appointment days. For me, being on time, early, or otherwise punctual has always been a big deal. So my fix here for starters was to begin showing up 30 to 45 minutes earlier than planned. Now there was time to help the folks finish getting dressed, taking their medications, seeing that they got their shots, or maybe letting the dog out for a poop before leaving. A simple change up that worked out to be a win/win.
I compelled myself to start viewing delays and setbacks that arose as "merely small matters" and no longer big deals or irritants. And then I recalled a quote that I once heard at a motivational seminar many years ago: "Don't be one of those people that go through their lives majoring in minor matters." Will the issue at hand that has you steamed up now really matter by the end of the day? Will it matter by tomorrow morning or the end of the week? Most likely it will not.
Reminiscence Therapy
Make a conscious choice to take time talking to your patient or loved one about the old times and experiences of their lives. Though their short-term memory forming abilities is under assault, long-term memories are often still intact until the disease has reached it's end stage.
I have found with my own family member that reminiscing and looking through old photo albums serves as a calming and pleasant activity for them.
Put simply: for them it is taken as a sign that they still matter, that they are still cared for, and that their memories are still validating the parts of them that have not been lost. Yes, they still have some face cards left in their hand to play!
A Spiritual Connection
Caregiving is not a responsibility that people enthusiastically line up for. On the contrary, many folks run like hell from it. The thought of providing care and assistance to a terminally ill patient or family member scares the dickens out of plenty of people. Yet it can have a positive transforming effect upon you. For those who chose to remain openhearted, empathetic and can keep their focus upon their patient instead of themselves, a spirit-to-spirit connection can be opened between caregiver and patient. I have met caregivers who have reached a place where much of their daily contact with their patient has become intuitive, non-verbal, almost extrasensory. Sometimes this kind of communication take the place in the form of what my wife calls "eye talk." A patient finds a way to communicate their needs with the caregiver with nothing more than their eyes.
This goes hand in hand with caregivers who go about their work with a respect and reverence for their patients. For them, patient or family member care is more of a soulful partnership; eventually enabling the loved one to meet head on their own death with a sense of acceptance instead of fear and dread. A chaperone angel, escorting another valiant spirit up to that place that others have referred to as the "departure lounge", to begin their journey home.
Talk To Others
There is strength in numbers.
Affirm to connect or reconnect with other families who have an AD member in their family. Spending time getting together on the phone, the internet or meeting face-to-face for lunch or coffee is both therapeutic and empowering. It is an opportunity to share your successes, your mistakes, and laugh at what seemed so distressing to you 3 days ago. Finding the humor in what you do goes a long way in dialing back caregiver anxieties. Become an e-mail, Facebook, or MySpace buddy with other caregivers. Sign up for e-mail newsletters and informational alerts at some of the websites that are listed at the end of this article.
Respite Care For The Caregiver
Sooner or later you as a caregiver will need a break. Someone else to step in for a day or two to cover for you. An opportunity for you to take a decompression break. Time to take a small vacation, a weekend getaway, or maybe tackling a small home improvement project that has nothing to do with sickness, medications, and incontinence. Caregivers absolutely need occasional breaks to get away from what they do!
If you are one of the family members who ran with the pack away from stepping up as a caregiver; here is the opportunity to step back into the game in a small but meaningful way and give the primary caregiver a break. You may not be cut out to provide daily care like the primary caregiver does, but just stepping in as a short term clutch player will be most appreciated!
Find A Hobby
It matters not what kind of hobby you already have or will choose to take up.
What matters most is that you have an activity that brings you some kind of enjoyment and distraction. Some folks are attracted to a hobby or perhaps sport that requires the expenditure of both physical as well as mental energy. Others are attracted to an activity that involves a team approach where they are engaged with others.
I consider myself one of the lucky ones in that I have several outlets that allow me to disengage and detach from caregiving. I love to write, read, tinker with graphic art design, pursue family genealogical research, as well as home carpentry and landscaping. Lots of hobby realms to go explore.
My advice is find something that you can immerse yourself in. An interesting and stimulating hobby serves as a counterbalance to the intensity and emotional demands of caregiving. An enjoyable hobby is one that you can flee into!
Empower Yourself By Reading
Alzheimer's Disease is getting a tremendous amount of attention at all levels of medical science including federal government funding. As of January 2010, there are some truly promising medications working there way through clinical trial right now. Over 600 plus trials are already underway or in the recruiting stage domestically and internationally for both AD medications and early detection diagnostic tools.
There are a variety of dedicated web sites to visit that provide beneficial information about the progress being made in the search for new treatments for Alzheimer's. I have listed here several of my favorite web sites to visit.
www.caring.com
The Caring site publishes questions submitted by caregivers and the answers every week. The answers are provided by a wide variety of experts in medicine, law, Medicare, Medicaid, etc. Lots of everyday hands-on information to family care providers. You can arrange to receive weekly e-mail alerts sent to your e-mail address to read, save, and share.
www.dementiaweekly.com
A great site with up to the minute articles on caregiving. AD and dementia research topics are featured. Plenty of informative short articles to read and share.
www.medicalnewstoday.com
This is my favorite site to visit. Why?
Because the articles feature the very latest worldwidemedical research findings written in a concise one to three page summary style. Even though my own personal focus involves AD, this site provides informative and educational bulletins on a vast number of diseases. Most of what I have learned about AD, the medications, and progress made with it were found at Medical News Today. As I became better educated about AD, I branched out to other sites from here.
www.alz.org.
The national level web site for the American Alzheimer's Association. Informative articles, helpful links and a listing of companies that have joined the national Alzheimer's Early Detection Alliance (AEDA). I recently subscribed to this web site as a caregiver to receive e-mail alerts on the newest research topics.
www.alzforum.org
A web site more for medical researchers, doctors, and clinicians.
The motto of this site is "Networking for a cure." The articles and bulletins are informative but not too technically cumbersome for the lay reader.
www.clinicaltrials.gov
I also like to visit Clinical Trials. Gov. at least once a month to see the progress of drugs already in the trial process. As previously mentioned, there were over 600 trials underway or enrolling subjects as of January 2010 for AD and related Dementias. I like to monitor those trials that are starting Phase III trials. This is because a Phase III trial represents the home stretch portion of the racetrack. At this level, a medication has already been in the pipeline and survived testing for maybe 8 to 10 years. Medications that successfully make it through a Phase III trial stand a 80 to 90% chance of making it to the marketplace.
Finally, the ranks of those providing caregiving duties to a loved one is a rapidly growing service business. With a new case of AD being diagnosed in the United States every 70 seconds, thousands of individuals and families nationwide are joining the caregiving collective every day. If you are a member of the Baby Boomer Generation as the two of us are, you will be involved in this business probably sooner than you realize.
The resources are out there. Empower yourself for the betterment of both you and the patient or family member you are caring for!
Jeff Dodson lives and writes out of Elk Grove, California
He is an active caregiver advocate and writes about Alzheimer's Disease
E-mail: imaginatic@frontier.com
He can also be found on MySpace and Facebook
April 2010
