Understanding how Alzheimer’s disease effects the brain is helpful for those that are daily trying to help a loved one make sense of the sometimes incomprehensible. Currently, there is no cure for Alzheimer’s disease but science is learning more and more about the causes and effects. However, armed with information, you do have the ability to maintain a higher quality of life for as long as possible during the progression of the disease.
At Helping Hands Respite Care our Adult Day Services (ADS) program can offer a level of consistency of care that can have a positive impact on not only the participant, but the loved ones bearing the brunt of the responsibilities of care. A regular schedule of stimulating activities and socialization, balanced nutrition, adequate hydration – all under a nurse’s supervision and well-trained care staff, can deliver positive results. Families report that their loved one comes home from the ADS program having experienced a stimulating day that results in a better appetite and better sleep —both beneficial for maintaining a quality of life.
Knowing when to seek care outside the home, or inside is so important. We recognize that all too often the direct family caregiver is reluctant to broach this subject with their loved one and will wait too long to get all of the benefits possible from a program like ADS. If you haven’t already, it may be time to ask your Doctor about an assessment or the Mini-mental exam. Being armed with information about the progression of Alzheimer’s disease will help. Here is a very short video that helps you understand the phases of the disease and how it acts on the brain. If you don’t watch the video right away, you can see our recap of the phases below the image. (Click on the image to watch 3 minute video)
Phases of Alzheimer’s Decline and how it affects the brain over average 8 to 10 years of the disease progression.
Here is a summary of the phases described in the video:
Ability to form new memories- short term,
Language processing- such as losing words,
Logical thought or ability to grasp concepts. Eg; clocks and calendars,
Emotions are heightened and sometimes difficult to control,
Senses are affected making it hard for brain to process. Eg; causing confusion or hallucinations,
Oldest and most precious memories are being lost,
Balance and coordination are affected,
Last stage the brain stops life functions like swallowing and breathing
Not every client who attends the ADS program has a diagnosis of Alzheimer’s disease. Some have other forms of dementia or are fighting other diseases such as Parkinson’s. Helping Hands Respite Care has been operating an Adult Day program for well over 30 years. We are proud of our history and continue to look to the future for ways to continue to improve.
If you are interested in learning more about the ADS program for a loved one, PLEASE feel free to reach out to Alison Sarkozy firstname.lastname@example.org our program supervisor to set up a no obligation exploratory visit.
Considering an Adult Day Program, wondering about cost? First, if you are asking these kinds of questions, chances are you realize that the need for care of a loved one is inevitable. Congratulations for beginning the discovery process – the sooner you know your options the better choices you can make.
How much does it cost is a fair question to ask, however, for decision-making purposes there are some value-related statistics that make sense to consider as well as other variables. So rather than start with an hourly or daily rate, let’s start with some quality comparisons among your possible options for a senior loved one.
Average Annual Cost Per Person for Long Term Care Options
In America we are just waking up to the fact that we need to be making better provisions for long-term care. Many people are living longer and longer in relative good health, yet may still need some care. Across the board adult day programs are the most cost effective option available for long-term care. The following chart shows average annual cost of care for: Adult Day Services Centers, Home Care Services, Home Health Agencies, Assisted Living, Nursing Homes Semi-Private room, and Nursing Homes Private room.
Evaluating Fall Risks, Emergency Room Visits, and Overnight Hospital Stays
You’ve heard the stories of family members who were one day doing just fine in their own home and then all of sudden experience an illness, an accidental fall, or escalating incidences of confusion or disorientation related to dementia. All are triggers for you that your loved one may not be safe at home, or may need some help to staying at home safely. The following chart outlines recent data on some key risk factors in four different care settings: Adult Day Service Centers, Home Health Agencies, Nursing Homes, and Residential Care Communities.
You will notice that two of the organization types do not have data in all instances, but most important is the dramatically lower incidences of Fall Risks, Emergency Room Visits, and Hospital Stays at adult day programs. At Helping Hands Respite Care, in our humble opinion, this positive performance is related to three major factors: the positive power of engagement and socialization, great training, and extremely favorable caregiver to member ratios. At the Adult Day Services program we average 2 or 3 members to 1 caregiver. This is an important statistic to ask about at any adult day program.
Daily and Monthly Expense Comparison of Long-Term Care Options
Adult day services programs out-perform on the array of available services and benefits. There may come a time when a nursing facility or assisted living arrangement may make sense, however many families will opt for choices which provide the opportunity for a loved one to stay in their own home or with loved ones. Adult day programs are the front runner in most affordable daily cost, and in most cases attendance at programs varies from 3 to 5 days per week. (Making the monthly expense range from $828 to $1380). Take a look at the list of benefits and attributes and see how your adult day services program stacks up.
Payment Help Could Be Available
At Helping Hands Respite Care we are always looking for ways to provide additional financial support for families who may need help. In the past we have received grants from the Tri-County Office on Aging which is tied to a formula for need based on household income and expenses; and there is also a contract which manages respite care funding available for Veterans.
Other ways that families pay for the Adult Day Services program include: private pay using funds from the member’s monthly income; some have used funds from a reverse mortgage on the family home; family members have also joined together to share the cost of care for a parent or grandparent; and some people have long-term disability insurance which may cover some care costs.
Getting Started at the Adult Day Services (ADS) Program at Helping Hands
The best way to start is to set up an appointment to come visit. We encourage interested family members and the prospective member to come for a visit that may last two or more hours. We suggest arriving at 10:00 or 11:00 am on any weekday. This will provide time to experience a few activities, sit together over lunch, and have time for a pre-screening to determine if your loved one would be a good fit. You will go home with some paperwork to fill out including an acuity assessment to help determine the level of care required. This acuity assessment will be the basis of discussion about the hourly rate. Our process is to agree on a starting rate which would provide the appropriate level of care and then revisit the acuity assessment after the first month to determine if there needs to be an adjustment in the hourly rate up or down. As time goes on the acuity assessments will continue in order to track progress or decline.
If there is a mutual decision to go forward the next visit would be an intake meeting where more information is gathered to determine the best plan for engagement and activities as well as care level. There is a modest $50 intake fee payable on that day. Last, a start day and schedule will be determined.
To learn more about how your loved one might fit in at the Adult Day Services program at Helping Hands and schedule your visit call ADS supervisor Alison Sarkozy at 517-243-0043.
Oh, did we tell you that snacks, lunch, and door to door transportation are included in our daily fee structure?
Learn about driving and dementia in the helpful article:
Living with Dementia: When Does Driving Become Unsafe?
By Ava M. Stinnett
A friend or loved one is diagnosed with dementia. Among the many concerns for caregivers and family members is determining when it’s no longer safe for the individual to drive. There are various signs to look for when assessing whether it’s time to give up the car keys; however, something just as important as safety is what the loss of autonomy will mean to your friend or loved one.
Try to imagine what it would be like if you could no longer drive. To most of us, driving means freedom and self-reliance. It’s a natural part of being an adult. Losing the independence that comes with driving may be upsetting. Having to rely on others to get around may feel uncomfortable for the person with dementia or Alzheimer’s. Keeping all of this in mind, how and when should you intervene?
A family member with dementia often adjusts better if they are involved in discussions about making the transition from driver to passenger. Some people, aware of the risks, will give up driving easily. Others may refuse to discuss the topic of driving, or they may exhibit resentment or anger when you start the conversation. You’ll want to be patient and acknowledge these feelings. The goal is to allow your loved one to maintain the highest level of independence and mobility while avoiding traffic risks. In some cases, it may be necessary to ask a physician or your family attorney to reinforce the message about safe driving.
When first diagnosed, a person with dementia or Alzheimer’s may still possess the skills necessary for safe driving. But because the disease is progressive, eventually driving skills will decrease and they will have to give up driving. Look for some of the following signs that indicate it’s time to limit or stop driving:
Loss of coordination getting in and out of the vehicle
Difficulty judging distance and space (e.g., parks inappropriately, hits curbs, drifts into other lanes of traffic)
Forgetting how to locate familiar places; returning from a routine drive later than usual; unexpected dents in the car
Difficulty seeing pedestrians, objects, or other vehicles
Making errors at intersections; difficulty with turns, lane changes, or highway exits
Failing to observe traffic signs
Stops in traffic for no reason
Driving at inappropriate speeds
Becoming increasingly irritated, confused, or nervous when driving
Once it’s determined that driving poses a hazard on the road, arrange for other forms of transportation such as friends or family members, taxis, public transportation, or special transportation services for older adults. (Note that taxis and public transportation work best for those in the early to middle stages of dementia.) In addition to transportation needs, the Alzheimer’s Association (800-272-3900) and the Eldercare Locator (800-677-1116) can help you find local resources and community services for having prescription medicines, groceries, or meals delivered to the home.
Bringing up the topic of turning over the car keys is a process. Over time, caregivers and doctors will need to begin the discussion and may need to return to it several times. Just as critical is knowing whether state laws require doctors to report any medical conditions that may affect their patients’ ability to drive safely. It’s never too soon to start planning a strategy to ease a loved one’s transition to becoming a non-driver.
A Message from Executive Director John Stauffer to the Families We Serve, Friends, and Supporters of Helping Hands Respite Care
Some of you may be aware that Helping Hands Respite Care has recently issued a report on our progress over the past year. This report was presented at our recent Annual Fund Raising Breakfast. The report is called Rising to Challenges and is available to be picked up at our Administrative Offices and will be available for distribution at any of our upcoming events. The essence of the report includes descriptions of challenges and opportunities we identified last year and how we responded to them; and then goes on to describe current and on-going challenges especially those related to our ability to deliver continuity of care by creating a competitive wage strategy for our direct care workers. It also quantifies and forecasts some new challenges rising.
These challenges and opportunities reflect both the conditions in our own marketplace and the needs that our families (and some families we haven’t met yet) have for enhanced or different levels of care. We are aware that some families and supporters might wonder why we would pursue new opportunities when we cannot fill all of the available direct care positions. This is a valid question, but from my perspective we simply cannot afford to ignore needs for direct care and the respite it delivers to families. In marketing vernacular we are not creating new markets, we are meeting an existing market need.
The clarification and promise that I want all of the families we serve to know is that our mission to solve the wage/employee and continuity of care challenge for families has not wavered, but it is a problem which is bigger than just one agency. We will continue to think about and respond to that challenge with a creative spirit and a hopeful demeanor that there will also be broad solutions coming from federal and state actions. That being said, I want these families to know that as we pursue some new opportunities, such as the one described in the May newsletter by Jeff Nunham, our absolute commitment is to NOT do anything to take care workers away from existing homes/families.
Recently I attended a meeting at Tri County Office on Aging where the Michigan office of the Public Health Institute presented a report on the results of a survey by the Partnership for Fair Caregiver Wages. (a scanned copy of the report can be found here) I have to confess that I was a bit shocked to learn about this organization and the work that it does. And I mean shocked in a good way – it was such a confirmation to know that our little nonprofit is not alone in the battle to attract and retain quality employees as direct care workers. For a few years MPHI has been leading the charge to gather data and advocate for some short-term and long-term changes in the broad and growing industry of businesses who have chosen to do the important work of caring for our most vulnerable citizens in Michigan, those with disabilities who need daily support and care.
The report describes the unintended impact of the increasing minimum wage. The direct care support market is not keeping pace with the minimum wage increases and a consequence to this labor market is that the direct care workers taking on the very challenging work of care are not attracted to this work because there are less difficult and better paying jobs in the retail and food service sectors. The report goes on to describe the high turn-over rates and increasing number of unfilled direct care worker positions has reached crisis level proportions.
My pledge to you is to keep you posted on any new developments coming from MPHI and the Michigan legislature on these important issues. There may be a time when you may be called on to make your voice heard. Until then, I am honored to serve all of the families who come our way at Helping Hands Respite Care, and to continue to provide leadership for the Michigan Adult Day Services Association (MADSA); and to work hard every day to maintain our commitment to Care for Those Caring for Others.
Helping Hands Respite Care
President of Board of Directors
Michigan Adult Day Services Association
One of the reasons I enjoy working with Helping Hands Respite Care is because our director, John Stauffer is a “see the need and try to meet it” kind of man. He knows the value of saying yes. He has this interesting combination of a great heart of compassion and the American Entrepreneurial Spirit. As a director, I see John lead with his heart much of the time, though he is sometimes painfully aware of the pennies and the “bottom line”. (Just ask him sometime about our Adult Day Service coffee pot situation). He recently spoke about the difference between For Profit and Not For Profit Care Agencies. He said, “the For Profit Agency cares for people in order to make money, while we, the Not For Profit Agency must make money so that we can care for people. I love the orientation of this observation. We are a Person Centered agency who strives to earn money so that we can provide respite for families who care for a loved one with a disability.
Discovering the Value of Saying Yes
This was recently illustrated in a way that has made a deep impression on me. At one of our “Walk Beyond the Barriers” information sessions this past winter, we hosted a couple who live more than an hour from East Lansing. They come to East Lansing at least once a week to deliver enough home cooked meals to keep their son nourished for a week. Their son, who I will call Jim, lives independently near campus, but he doesn’t cook. They had not had a vacation in years and were desperately trying to find an agency who could stop by Jim’s apartment and check on him for a few minutes while they were out of state. Though this is not the typical service we provide, leading with his heart, John said, “Yes, I think we can do that for you.”
Let me tell you about our new friend, I will call him Jim. Jim works on campus about 30 hours a week. He walks to his job, does his work and goes home to his apartment. His social interaction is primarily his work. He lives alone. Jim loves MSU sports; actually, he loves all sports. He has season tickets to Spartan Basketball, loves to play golf, and shoot baskets. He keeps his apartment immaculate. He is tall, lean and very athletic for a 42 year old man. He is a very kind and gentle man, who when you meet him, you feel like you want to spend as much time as possible with him. The reason? He listens like he really cares. He is very quick to smile and his eyes express warmth and acceptance. Who wouldn’t want to spend time with someone like Jim? The only challenge in spending time with this wonderful man is his disability. Jim has Cerebral Palsy. It has robbed him of the ability to speak clearly. This makes being with people very difficult. The result is isolation. Isolation means never feeling comfortable going to the store, restaurant or the bank without his parent. More than this, his disability has robbed his community of meeting and interacting with a very interesting and engaging man.
Recently, Jim and his mother and I met to talk about ways that Helping Hands Respite Care could help Jim expand his world. We discussed Jim’s invitation for us to come alongside him and teach him some of the daily activities that he has never ventured to learn. We are going to journey with Jim. We will explore the amazing (often extremely frustrating) world of the computer. We will be learning about shopping, going to the bank and any other activity Jim wants to do. Wow, what a joy this will be for Jim and our care provider.
Once again, I see the wisdom of meeting needs as the first priority of our Not For Profit Agency over all other possible first priorities. Thanks John for leading with your heart. The wonderful gift this gives, is the opportunity to serve an amazing man like Jim. This is why we’re here; and this is what we do.
Marie Marley is an award winning author who wrote a memoir reflecting a 30 year love story that she shares with her partner, Ed. Since Ed has been diagnosed with Alzheimer’s, Marie uses the space below to give insight as to how she overcame challenges that typically arise while caring for someone with Alzheimer’s. In comparison to many other caregivers, one of Marie’s challenges was how to convince a loved one to go to the doctor.
By: Marie Marley
Late one night I was deeply engrossed in writing a short story about three parakeets when the phone rang. Must be Ed I thought. But it wasn’t. It was a woman calling to tell me she’d found Ed driving on the wrong side of the road. In my deep denial I thought it was just because he was driving after dark. (He wasn’t supposed to drive after dark.) I was able to convince Ed to come home with me. I thought it was just a temporary confusion — not a sign of something more ominous. Not an early sign of Alzheimer’s.
In its 2014 report, Alzheimer’s Disease Facts and Figures, the Alzheimer’s Association states that someone in the U.S. develops Alzheimer’s every 67 seconds. The report also says that an estimated 5.2 million people in the U.S. are living with Alzheimer’s, and that 500,000 people die [each year] because they have the condition.
Overcoming Denial — The First Hurdle
As I wrote in a previous article here, Alzheimer’s and the Devil Called Denial, the disease is, above all, an insidious one. Its symptoms often begin so mildly and progress so slowly that it’s easy for friends and loved ones to deny them. There is a tendency to make excuses for the person, to push the symptoms to the back of one’s mind, or to try to explain them away.
The person with the symptoms is often in denial as well. In my Alzheimer’s memoir,
Come Back Early Today, I discuss this. As their brains slowly deteriorate, they struggle to adjust and continue functioning. During this time symptomatic people usually realize something is wrong and try to understand it in any way possible that doesn’t involve the words “Alzheimer’s” or “dementia.”
Why to Get the Person to a Doctor
It’s critical for everyone involved to overcome their denial and take the first difficult step of consulting a physician about the symptoms. Some people think there’s no reason to seek a diagnosis because there’s no cure for the disease. Yet it’s is important for several reasons. The first is because the person may have some other condition that’s treatable or even reversible.
According to an article published by Dr. Oz and Dr. Michael Roizen, “Many conditions can mimic Alzheimer’s, including vitamin deficiencies (such as folic acid, niacin or vitamins B-1, B-6 or B-12), normal pressure hydrocephalus (NPH), depression, urinary tract infections, an underactive thyroid, and reactions to certain drugs.”
The Alzheimer’s Association lists these other advantages of early detection:
1) You can explore treatments that may provide some relief of symptoms and help you maintain a level of independence longer.
2) A diagnosis of Alzheimer’s allows you to take part in decisions about care, transportation, living options, financial and legal matters.
3) Care and support services are available, making it easier for you and your family to live the best life possible with Alzheimer’s
In Alzheimer’s and the Devil Called Denial, I added to that list that early diagnosis helps you and your friends and family members adjust to the person’s condition, rather than becoming angry at their unusual actions and possible negative personality changes. It allows everyone to be more understanding and compassionate with the person.
How to Convince the Person to Go to the Doctor
Unfortunately, in many cases people experiencing symptoms of Alzheimer’s flat out refuse to consult a doctor. This may be because they are so much in denial they think nothing is wrong with them. It may also be that they are secretly afraid that it may, in fact, be Alzheimer’s. Many strategies can be tried to convince the person to visit a physician.
You may be able to reason with those who have mild symptoms, although it may take several discussions before they agree to be seen. You might also ask a good friend or favorite relative to speak with the person. Sometimes people will pay more attention to someone other than the primary caregiver. You could also ask the person’s physician or attorney to talk with them about it.
The Alzheimer’s Association St. Louis Chapter has published a PDF that gives several possible strategies for solving this problem. Among the suggestions are to “Seize the opportunity. Suggest a check-up if your loved one expresses any concern about ‘not remembering things lately.’ You could explain that there are new medications that may help with memory, but they must be prescribed by a doctor.”
Another piece of advice in the PDF is to “Ask for a personal favor. At times, loved ones will do something for others that they would not do for themselves. Ask them to see a doctor as a favor to you.”
Those with more advanced symptoms may not be amenable to a logical discussion of the issue. Carol Steinberg, then Executive Vice President of the Alzheimer’s Foundation of America, told me in an interview that you may have to use what we call ‘therapeutic fibbing.’ She gives an example: “Tell the person you have a doctor’s appointment and ask them to go with you. This of course would have to be prearranged so the physician would know the real reason for the visit.”
The Alzheimer’s Association Northern California and Northern Nevada Chapter has several suggestions as well, in a blog entry entitled, How do you convince your loved one with memory loss to see a doctor? Among the ideas put forth is to “write down concerns and observations and mail them to the person’s physician. Then you could suggest they call that person for an appointment based on something else in their medical history.” The article states that a doctor may not follow through, but it is worth a try.
According to Paula Spenser Scott, writing on Caring.com, you may want to “try calling the doctor in advance of a routine check-up to express concerns and ask about a memory screening. Or use another health complaint (fatigue, arthritis) as a pretext for making a physician appointment.”
Ms. Scott also says you should acknowledge the person’s fear by saying something like, “It’s not pleasant to think about and I am a little worried, too. But if we can find out what’s behind the mix-ups, then the problem can be treated.”
Finally, as a last resort, the St. Louis Alzheimer’s Association chapter PDF says you may have to call Protective Services. “If your loved one has become a danger to themselves, or if their well-being in in jeopardy, outside help might be required. Protective Services may be able to help convince your loved one to see a doctor.”
No one wants to have a loved one evaluated for Alzheimer’s. There’s nothing more chilling and painful than to find out a loved one has the disorder. But when symptoms are present seeing a doctor is critical, and the sooner the better.
Does anyone have any other ideas about how to convince a loved one with symptoms of Alzheimer’s to go to a doctor?
To read the entire blog, please visit the link below:
We love our young people who visit the Respite House! Just as important are the families who utilize our services in order to take a much needed break (respite) over an occasional weekend.
We know it is not easy for caregivers to entrust their loved one to our care without worrying or having some anxiety. Sometimes the stress and tension can be seen in the caregiver’s face and body language as they come through the door and proceed with the weekend “check-In.” The amazing part of this journey however, is seeing the caregiver’s “smile and restful look” as they return for “checkout.” The caregivers see all is well with their loved one and how much they have enjoyed their stay away from home. Those same care giving parents/guardians gladly notice the art projects, baked cakes and talks about the singing and dancing, as well as the many other happenings such as playing outside in the park and taking walks along the trails that surround our welcoming “Respite House.” There is a sigh of relief that only proper “respite” could bring month after month of visiting.
Apparently, our true mission becomes clear to our care giving families when they start to realize everyone deserves and needs a break now and then. From the countless cumbersome responsibilities along with the daily draining environment of providing for loved ones with special needs and timely requirements, respite care naturally becomes a win/win. The children/young adults benefit from the mini reprieve while socializing with others who also are creating new and building lasting friendships with each other, and at the same time, their care providers are able to have that well deserved break.
For more information or questions about the Helping Hands Respite Care’s Respite House, please contact our office at 517-372-6671 and ask for Supervisor, Dawn Todd (Ext. #106)
Dotty’s Ten Tips for Communicating with a Person Living with Dementia
Here are ten tips you can use to improve your life and the life of an individual living with dementia.
1. You know what makes me feel safe, secure, and happy? A smile.
2. Did you ever consider this? When you get tense and uptight it makes me feel tense and uptight.
3. Instead of getting all bent out of shape when I do something that seems perfectly normal to me, and perfectly nutty to you, why not just smile at me? It will take the edge off the situation all the way around.
4. Please try to understand and remember it is my short term memory, my right now memory, that is gone. Don’t talk so fast, or use so many words.
5. You know what I am going to say if you go off into long winded explanations on why we should do something? I am going to say No, because I can never be certain if you are asking me to do something I like, or drink a bottle of Castor oil. So I’ll just say No to be safe.
6. Slow down. And don’t sneak up on me and start talking. Did I tell you I like smiles?
7. Make sure you have my attention before you start blabbering away. What is going to happen if you start blabbering away and you don’t have my attention, or confuse me? I am going to say No – count on it.
8. My attention span and ability to pay attention are not as good as they once were, please make eye contact with me before you start talking. A nice smile always gets my attention. Did I mention that before?
9. Sometimes you talk to me like I am a child or an idiot. How would you like it if I did that to you? Go to your room and think about this. Don’t come back and tell me you are sorry, I won’t know what you are talking about. Just stop doing it and we will get along very well, and probably better than you think.
10. You talk too much, instead try taking my hand and leading the way. I need a guide not a person to nag me all the time.
This list of 10 signs of caregiver stress comes to you from the Alzheimer Association. At Helping Hands Respite Care we often see or experience these signs first hand. It is heartening to know that we provide the means for families to get temporary relief from the stress they feel because of their responsibilities as a caregiver.
If you experience any of these signs of stress on a regular basis, make time to talk to your doctor.
1. Denial about the disease and its effect on the person who has been diagnosed. “I know Mom is going to get better.”
2. Anger at the person with Alzheimer’s, anger that no cure exists, or anger that people don’t understand what’s happening. “If he asks me that one more time I’ll scream!”
3. Social withdrawal from friends and activities that once brought pleasure. “I don’t care about getting together with the neighbors anymore.”
4. Anxiety about the future. “What happens when he needs more care than I can provide?”
5. Depression that begins to break your spirit and affects your ability to cope. “I don’t care anymore.”
6. Exhaustion that makes it nearly impossible to complete necessary daily tasks. “I’m too tired for this.”
7. Sleeplessness caused by a never-ending list of concerns. “What if she wanders out of the house or falls and hurts herself?”
8. Irritability that leads to moodiness and triggers negative responses and actions. “Leave me alone!”
9. Lack of concentration that makes it difficult to perform familiar tasks. “I was so busy, I forgot we had an appointment.”
10. Health problems that begin to take a mental and physical toll. “I can’t remember the last time I felt good.”
To learn more about respite care and the Adult Day Services (ADS) program at Helping Hands Respite Care, contact Alison Sarkozy email@example.com
It’s happened twice in the last couple months. On two separate occasions, I have found myself sitting with a person who is being consumed by that dreaded, later in life condition called Dementia. It’s like a skulking, silent plague that randomly picks its victim, moves into a home and slowly begins its cruel work. I say dreaded because it is. I have discussed this numerous times with my mother (age 86) who thankfully does not have it, but unfortunately speaks of it daily. I suspect that each of us knows someone whose home has been invaded by this disease. By this time, everyone knows someone who has IT.
Twice now, I’ve watched eyes filling with tears as we have discussed the future and the necessary supports that must begin in order to make life as good as possible, considering the prognosis. I am part of that support system which can make it possible for a person with dementia to continue living in their beloved home. At this point reader, I want to let you know that the two occasions I’ve mentioned in this article are not the people with the diagnosis, but are the primary care givers of a loved one with this horrid disease. When this disease comes to a family, every person in the family is affected by it, especially the spouse or the adult child of the stricken loved one. The primary care giver is never out of thought or touch with it. The burden of the disease typically falls on one of these two.
As you began reading this article, your thoughts no doubt were upon the person with the diagnosis. You may have looked right past the silent, sometimes invisible care giver who is always dealing with the effects of their loved one’s disease. I don’t fault you if you did this. For, the reality is, the person we call the primary care giver, does exactly the same thing. These amazing selfless family members take little or no thought of themselves. This usually leads to fatigue and often a progression toward resentment, then anger, then guilt. If they do not ask for help, they will see the deterioration of their emotional and physical health. They need help! But they usually don’t ask. This is where Helping Hands Respite Care comes in. We are here to “Care for those, Caring for Others.”
I would like to make two suggestions: First, do you have a friend who is a care giver? Take another look at them. Do they need help? Be their friend with helping hands. Second, are you a person caring for a loved one? Take another look at yourself. Read carefully read the 5 signs of Care Giver Burnout and take an honest look at yourself. Please accept help when offered or reach out to someone in your life who can be a help. Seek help through support groups, professional counselors, clergy, and persons or agencies who provide respite care.
5 Signs of Care Giver Burnout in the Case of Dementia
1. When the Primary Care Giver no longer engages in preferred and pleasurable activities because they are no longer interested. Certainly, available time for recreation may be limited, but not wanting to do these activities for lack of interest is the issue.
2. If you know the Primary Care Giver fairly well, do you notice their emotions coming to the forefront more than usual? Do you recognize anxiety, worry, irritability or anger that seems unusual or possibly more intense? Like over-reacting to disappointments or expressions of being overwhelmed by things that are not that significant.
3. Does the Primary Care Giver easily tear up when they hear words of affirmation, sympathy and concern? They may be dealing with fear, feelings of isolation or guilt.
4. Does the Primary Care Giver seem detached, indifferent or unable to accept offers of help?
5. Is the Primary Care Giver neglecting their own personal care or the personal care of the one they are caring for?
Addition information about Care Giver Burnout can be found soon on our website as part of the Family Care Giver Respite Education project.
If this article stirs your heart in some way, please feel free to call me. I would love to talk with you.
Jeff Nunham, Adult In Home Care Supervisor, 517-372-6671 ext. 105, firstname.lastname@example.org