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:
Adult In-Home Care Supervisor, Jeff Nunham, share his personal experience with disability and how it changes everything when a disability comes home.
My cell phone was sitting on my computer when it went off. “Hello?” It was my nephew, a seasoned police officer and a member of the Tri-County SWAT team. “Uncle Jeff, I’ve got some bad news.” My mind came to attention and my thoughts instantly went to a vision of DEATH. I braced myself. There was a pause; I knew he was trying to get the words out and was fighting to keep himself from sobbing. “Dad has had a stroke and it’s very bad. They’ve taken him to the hospital.” Now I was having trouble speaking, stunned by his tone and the message.
As a former minister, I have walked through the emergency room doors countless times. I have been with families who are huddled around the gurney, contained by the curtained room, looking down on their loved one in stunned silence. When they see me, they sigh and wordlessly ask through tear-gorged eyes, “Why?” These are moments you never forget. I will never forget the day that “disability” came home to my family.
In speaking to care providers and other groups, I have often referred to a disability as something which is living. I have said, “When a disability comes to a family, it takes something from every member of the family, not only the person with the diagnosis.” Disabilities are obnoxiously rude and insensitive. They have their own will, making choices without consideration of anyone but themselves.
Now, I believe that I have been altogether too kind in my representation of a disability. It is all that I have said, but much worse than I could have known. The reason for my enlightenment? The disability has come to visit MY family. He has robbed my brother of all but life itself.
So, for this Supervisor of In-Home Care for Adults with Disabilities, I have been thrown into a larger than life crisis that brings all the talk and discussion about disabilities right into my lap. This “disability thing” does not go away at the end of the work day. Neither does it subside like a bad case of the flu or even a life-threatening heart attack. My brother is completely paralyzed on one side of his body, cannot speak and can barely swallow. This isn’t going away anytime soon.
For all of you dear ones who love and care for a family member or friend with a disability, I know more about you now than I did a few weeks ago. I am more fully aware of the power over your life that a disability exerts. I ask questions now which I never asked before and hear doctors give their vague and hopeful answers. I am witnessing daily the power of care providers who lift so much more than lifeless limbs. They lift the spirits of those who are disabled and those who love them. The word care has come to mean so much more to me than I could have ever imagined. The word miracle is no longer just the work of an unseen and benevolent Power, but is the fruit of steady, compassionate care, given at the right moment and in the right way.
Words are weak and helpless agents for expressing the gratitude I have for every person who loves and cares for a person with a disability. I see my brother each morning at the hospital for about 20 minutes. The staff who serve him have become dear to me. They are amazing. I have always been impressed with and grateful for our care providers at Helping Hands Respite Care. But now, I see them differently. To me they are saints who are the hands of God. I honor you who care.
In follow up to our recent caregiver satisfaction survey, below is an analysis of the results.
Reflected in this survey, Helping Hands Respite Care (HHRC) creates opportunities for families in the Lansing area who are taking care of a loved one with a chronic disability or age-related condition to receive respite. Respite is the provision of temporary relief for caregivers and families who are caring for those with disabilities, chronic illnesses, or the elderly. Planned respite time is a vital part of the continuum of family services intended to reduce family stress, support family stability and minimize the need for out-of-home placements. We describe our work in respite as ‘Caring for those, caring for others.’ We believe it is important to help improve the overall quality of life for our program participants and their families. Moreover, our agency helps to address the myth that the individual with the disability or age-related condition is the one who needs the most support. We have found that most times, the caregiver is in desperate need of support or even a break, but does not know how to ask for it without feeling guilty.
February, 2016 was a significant month for Helping Hands Respite Care because we launched the ‘Helping Hands Respite Care: Annual Caregiver Survey.’ This project is important because it promotes communication among the HHRC staff and caregivers and at the same time allows our agency to effectively meet the needs of program participants and their caregivers. As a result, this assessment reminds us that it is important to make agency development decisions based on objective information rather than our own ideas.
The purpose of this assessment was to measure the primary caregiver’s satisfaction as it relates to our organization providing respite, and to provide a way to introduce new respite opportunities such as emergency overnight respite. In comparison, the goal was to arrange a safe space for these individuals to provide feedback to our agency. The Helping Hands Respite Care: Annual Caregiver Survey contained multiple sections for the respondents to read through and provide meaningful and honest responses. These sections included questions about the program participant’s general demographic information, marketing projects, caregiver/care receiver feedback, new agency initiatives, in-home care for children and adults, the adult day services program, and also an overall evaluation.
This survey targeted primary caregivers who receive respite from our agency. Our caregivers mean a lot to us, especially when it comes to non-profit development because they sometimes serve as a connection between our agency and the local area. These families and individuals are also able to see our agency through a different lens than we as employees, interns and volunteers. Therefore, as our organization continues to work on our agency development, we believe that the opinions of our caregivers is very beneficial.
The Helping Hands Respite Care: Annual Caregiver Survey was distributed based on the caregiver’s preferred method of receiving information from our agency. With that being said, participants either received the assessment as a hard copy through the mail or within an email that contained a web link to the satisfaction survey. Upon receiving the survey, each participant was asked to read and answer the questions to the best of their ability and return the survey to our agency by Sunday, February 14, 2016. The implementation of the satisfaction survey is the first time our agency has surveyed each program at the same time. It was also the first time utilizing an online survey service which creates customized surveys.
There were no known risks for participants upon completing this satisfaction survey. As a way to honor the trust between our agency and those individuals that we serve, all survey results have remained confidential and are stored in the HHRC administrative office. Data collected by the participant’s has only been viewed by the HHRC program directors and board members. The names and contact information of those participants who requested additional resources have been sent to individual program directors only.
Findings and Results
Participating in the assessment was completely voluntary. The number of responses received was 19 (27.5%) which was lower than what we hoped for; considering 69 caregivers were invited to participate. It was also noted that not all of the surveys we received were completed. Therefore, the results do not represent all HHRC’s caregivers, only those who responded.
The Helping Hands Respite Care: Annual Caregiver Survey contained a variety of questions including rating scales, multiple choice options and also comment boxes that allowed the caregivers to elaborate on their ideas and thought processes. Of the results we received, we noticed trends within each section of questions.
The general information section of the assessment gave our agency a glimpse of the individuals we serve whether they are the caregiver or care receiver. For example, the responses to our survey were received from spouses and also adult children of agency clients, but the majority of the individuals who returned the survey to our agency were parents of the client. In comparison, these results show that our agency cares for a variety of age groups (the majority) who identify as being male, White/Caucasian, and participate in our programs so that their family can receive time off while they enjoy socialization time with others. Additionally, it was also reported that the care receivers are receiving care for diverse reasons but mostly cognitive or developmental disabilities.
As the survey shifts to the marketing projects our agency has adopted, the results show that although most of the respondents have not seen a copy of our new brochure, they were pleased with our agencies new logo and brand identity. On the other hand, many respondents were not familiar with our friend raising event, “Walk beyond the Barriers” or active on the Helping Hands Respite Care website and Facebook page. In contrast, there was more of a positive response to the e-newsletter because survey participants noted that they receive and read the e-newsletter while others provided contact information to begin receiving the e-newsletter.
HHRC is featured once a month on a local news show, “Morning Blend.” During this time, the executive director and marketing specialist highlight new initiatives and upcoming events for our agency. When asked whether or not the caregiver has seen the monthly Morning Blend features, most responded that they had not seen Morning Blend featuring HHRC. However, a respondent did suggest a new discussion topic to be considered for an upcoming segment, “adults over 50 caring for their disabled children.”
Caregiver/ Care Receiver
The caregiver section was specifically designed to create a safe space for the respondent. For this reason, along with multiple choice options, comment boxes were created for open ended answers. From these results, our agency noticed that most of our responding caregivers are providing unpaid care and assistance to one person and the amount of time this care has taken place is very diverse. For example, one individual reported 18 months and another reported 33 years. Participants were asked to define their role as a caregiver and to also select the life stressors they experience as a caregiver. In the space provided, caregivers explained that being a fulltime caregiver can be very difficult, challenging, and even complex. Some of the life stressors that have come along with being a fulltime caregiver are the inability to take vacations, lack of personal space, and mostly lack of personal time.
Caregivers were then asked to explain what they would change to make their role as a caregiver less stressful. From these responses, individuals reported that increased personal time is needed, more help from family members and friends and these individuals would also appreciate additional in-home respite. All in all, it is apparent that these caregivers understand the importance of respite because when asked ‘what is the biggest benefit of receiving respite?’ the majority stated “time for me to rejuvenate,” “time for me to run errands,” and “time for me to build relationships with family and spouse/partner.” Moreover, the majority of these caregivers said they are pleased with the respite received from HHRC and are interested in learning more about community resources.
HHRC is aware that some program participants are unable to communicate effectively. With that, we used this opportunity to ask the caregiver for insight as it relates to the care receiver’s level of comfort while receiving services from our agency; if noticeable. For example, of those surveyed, the majority of the care receiver’s participate in our In-Home Adult Program and also the Adult Day Services Program. These participants were reported as mostly content and comfortable with the HHRC programming.
Helping Hands Respite Care has been exploring new ways to provide additional respite for the families we serve. With that being said, Helping Hands Respite Care is looking at the feasibility of two new service models- one to implement a new model of in-home respite; and second creating emergency overnight respite services. The new proposed in-home model would involve a CNA or seasoned care provider training a volunteer to provide quality care to an individual client. The proposed emergency overnight respite would be available upon request. When asked if the caregivers would utilize these new initiatives, the majority of responders answered ‘yes’ for both initiatives and also indicated interest in receiving more information. Some of the major concerns the care providers mentioned for both new programs would be the ‘quality of training for the CNA and volunteer’ as well as concerns about the process of ‘paying in advance for the emergency respite.’
Child and Adult In-Home
Some of our caregivers receive respite through the In-Home Child and Adult programs. HHRC caregivers are trained by our agency to work one on one with individuals who prefer to receive respite at home. Overall, those caregivers whose loved ones participate in the In-Home Child and Adult Programs stated that they are satisfied with the services provided and agreed that the HHRC staff members work well with their loved one. When given the opportunity to explain what these caregivers liked most about the In-Home Programs, many said they like the care providers in general because they are well trained and a good match for their family/loved one. On the other hand, when asked what they liked least about the In-Home Programs, two respondents said “turn over in caregivers and lack of caregivers” while another said they would like to receive notifications of staff changes earlier.
Additionally, caregivers who receive In-Home Respite were asked whether or not they would like to schedule a counseling session with our intern/counselor and were also provided space to emphasize what they might discuss with the intern/counselor. The majority of the participants indicated that they are not interested, but those who are interested provided their contact information along with concerns they wanted to address in the counseling session. Some of the concerns were “help with difficult behaviors,” “caregiver stress,” and “an overall understanding of things.” Moreover, trends were noticed throughout this section. For example, when asked whether or not the HHRC staff person was approachable or well trained, two respondents answered “disagree” and the same result was noticed when the caregiver was asked whether or not HHRC’s programs are meeting their current needs. Despite those singled out reviews indicating some dissatisfaction on delivery of service, all of the caregivers surveyed agreed that they would recommend HHRC to another family.
Adult Day Services
Some program participants receive respite through our Adult Day Services (ADS) program in addition to or instead of In-Home Services. In this section of the survey, participants stated that they ‘agree’ when asked whether or not they are satisfied with the ADS Program, if it meets their current needs, and if the staff works well with the program participant. Caregivers were also satisfied with the fact that there is a registered nurse on staff along with the information, suggestions and care provided by the ADS program employees. When asked what the caregiver liked best about the program, one respondent said, “location, the fact that it exists” and another said, “It is close to home. It provides a safe and secure place and stimulation for participant.” However, when asked how the ADS could better serve the caregivers needs, one participant said, “Evening program from 6:30-9:30pm” and another said, “more one-on- one teachings for people with dementia.” Lastly, all respondents agreed that they would recommend the ADS program to another family.
As The Helping Hands Respite Care: Caregiver Survey concluded, we took time to reintroduce our Free Fun Events along with two other programs, Breaking Barriers Today (BBT) and The Respite House and lastly to receive an overall evaluation. For example, when asked how likely the participants are to attend a Free Fun Event with our agency, the results were divided between “very likely,” “slightly likely”, and also “not at all likely.”
The evaluation questions for BBT and the Respite House were followed by a comment box so that the caregiver could write their own response. When asked to share thoughts about the BBT Program, one respondent said, “the supervisor is receptive to any schedule changes. Flexible!” and another said, “things have really improved since the beginning. The new location and system seem to be working well now.” At the same time, when asked for feedback about the Respite House, one participant said, “I love it,” and another suggested out sourcing this facility. As survey participants gave their final thoughts, a few individuals thanked us for our work while another noted changes within the agency’s culture in comparison to past years and also gave suggestions to create a space for families to get involved more through a family advisory board.
After collectively reviewing the survey and feedback from the participating caregivers, following is a short list for consideration for areas to improve the survey process and results for next year’s distribution.
– It is always in the best interest of our agency to work on improving satisfaction numbers. This can be done first within each program and then overall as an agency.
– It was reported that there was a hiccup with the online survey function which we regret and can easily improve in future surveys. (ex. Some participants preferred to click more than one answer to effectively respond to a question but could not.)
– Some participants did not complete the survey entirely- Perhaps 83 questions felt a bit overwhelming. For future surveys we may explore sending specific sections of the survey to specific caregivers. (ex. John Smith attends the ADS program, so his caregiver will only receive questions pertaining to HHRC and ADS).
Resources for Caregivers
Many of the caregivers asked for more community resources as well as additional respite time. Although the contact information has been sent to each program director regarding the questions/concerns our caregivers have, it may be beneficial to send an overall update to the caregivers on progress that our agency has made. This progress could be sent via e-newsletter or by mail.
If caregivers have more questions or concerns, it is recommended that you please contact or visit our administrative office and speak with the program directors.
As stated above, the purpose of The Helping Hands Respite Care: Caregiver Survey was to assess the primary caregiver’s satisfaction as it relates to our organization providing respite. In doing so, it was important to our agency that we provide a safe space for caregivers to voice their opinions in a nonjudgmental way. It is our goal to always provide quality care and respite for the families we serve as it relates to our mission. What that, we thank you for your participation and informing our agency of ways we can continue, Caring for those, Caring for others.
Helping Hands Respite Care Staff This analysis was prepared by: Jackie Gibson, MSW (effective 5/6/16)
We often talk about the barriers and obstacles people face who suffer with a disability. Last month, I wrote about those care givers who are “on” 24/7, giving
care to a family member with a disability and who are silently suffering under the strain that goes with that level of loving care. The primary caregiver also face enormous barriers. One which we often see is the myth that says, “No one can care for my loved one like I can.” This is one huge barrier which keeps a caregiver from reaching out and asking for help.
If this is you, then this brief note is must read.
If you have been reading my newsletters lately, you will know that I think we have an exceptional staff of very competent and compassionate people. They often amaze me. Sometimes they really touch my heart.
The typical communication I exchange with our care providers is “housekeeping” kind of things. Things like filling vacant shifts, picking up medication sheets or scheduling a meeting. It is all very important, but not memorable. However, once in a while a care provider will send me a note that reminds me of the reasons I am so confident in the quality of care we give. See what you think.
Just to set this up; our client, M.K. had been acting out in ways that were quite challenging for the care provider. After a particularly difficult shift with MK, he had written an Incident Report to which I had responded, thanking him for the way he handled the situation. This is his response to me:
“Thank you, I’m just glad that the medication seemed to help his headache and combined with redirection he was able to get back to the normal happy M.K. we all know. By now M.K. is like a brother to me, and the goal is to predict what is ailing him before it gets to the point of outburst. I believe a headache or backache lead to his frustration which eventually manifested itself to this point. It hurts me to know he is in pain and has trouble communicating it, so all I can do is help him the best I can as soon as I become aware of his troubles. Sadly in this situation it was much more acute and happened rather quickly.”
Can you hear his heart…………? Who wouldn’t want the love of a brother to shape the care your loved one gets? He is one of the reasons why we say, “This is so much more than a job for our care providers”. Our care providers are all heart.
As a supervisor, I am always looking for care providers with heart. One vital source of great compassionate care is the volunteer who serves because they love to give. A few days ago, as I was walking by one of our volunteers who helps out in the Adult Day Services program, I stopped to thank them for the work they are doing. I thanked her for giving her time to be a part of the program. Her response struck me just like the email you just read. “I just love it here” was her immediate reply. Her eyes were bright and her smile revealed her warm and loving heart. Who wouldn’t want to spend the day with people like that? Like the employee who loves like a brother, this volunteer brings that same warmth and compassion to our members.
This is a message I wish every care giver could hear. If you fear allowing another person to care for your loved one, I simply say “the heart of the matter is a respite care provider who will care like a brother and serve with the love and compassion of a volunteer.”
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 firstname.lastname@example.org
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, email@example.com
For family caregivers of children with special needs, it may be time for self care in the New Year. With the perceived pressure that we must accomplish a year’s worth of work in less than a month, we’re stressed. And whether they can articulate it or not, kids are hypersensitive to our feelings, so they feel our stress magnified. So how do we bring the stress level down? Give yourself permission to let it go.
I know we are all busy and finding time to take care of yourself can be a challenge. But if you don’t take care of yourself, it won’t be long till you start to break down both mentally and physically.
Self-care is not a one-time deal, it the constant repetition of many tiny habits, which together soothes you and makes sure your equilibrium is stable emotionally, physically, and mentally. According to scientific research, the best way to reach your optimum is to implement tiny self-care habits every day. The following is a list of ideas of self-care activities you can fit into a short amount of time.
Self Care Ideas for the Mind
1) Be selfish: do something today because it makes you happy.
2) Mindfulness activities: take five to ten minutes of your day to body scan and become aware of your thoughts, feelings, and sensations. There are free mindfulness apps you can download on your phone.
3) Change your routine: mixing up your routine in small ways can create new neural pathways in the brain to keep it healthy.
Self Care Ideas for the Body
1) Exercise: any type of physical activity releases endorphins which are natural stress-fighters. Getting yourself into that exercise groove helps get your mind off the things stressing you out.
2) Oxygenate: take three to five deep breaths to help regain a sense of control and balance of your mind and body.
3) Narrow your food choices: Pick two to four healthy meal choices to rotate for the week.
Incorporating self-care activities in your daily life will help you keep in tune of your mind and body. You will feel more connected to yourself and the world around you.
Which one will you try first?
By Jeff Nunham – Adult In-Home Care Supervisor
Do you remember the action TV series, The A-Team? You probably remember Hannibal, the cool leader of this special team of exceptional “bad guys” doing good. With a wry smile and little stogie, he would say,” I love it when a plan comes together”. I visited a home this week where I witnessed a plan coming together.
The Independent Living Plan in Action
We provide care for three “twenty something” gentlemen with a coordinated Independent Living Plan. They live relatively independently in a duplex together; two on one side of the house and one on the other with the land lord. The house is a rental and has been such for a long time. The walls, furniture and floor have a certain patina on them. It’s obvious that none of the guys are concerned about keeping up appearances. The rooms are sparsely furnished with just the necessities. On the walls of the dining room are several large chalk boards with scheduling information. A care providers name and the day and time of their shift is written in large letters and the person with whom they will be working. This is the communication center. There is a spacious kitchen with a large refrigerator. It has a hasp and padlock on it for diet control. There are usually dishes in the sink and a wastebasket that needs emptying, but what I see is none of this.
Max knew I was coming to see him. He was waiting for me on the front steps. Before I shut off my car, he was calling out my name and walking across the street to meet me. We “high fived” each other and walked together to the house. For a moment, I felt like I had just met my very best friend. Max can make you feel that way.
When we climbed the steps to go into the house, Roger appeared in the door with a huge grin and an abrupt report about the change he was making in his schedule. He announced to me with great pride and joy that his care provider was going to start coming on Sunday so he could go to church. Again, I felt something. His exuberance affirmed my hopes that our efforts were making his life better. In just 48 seconds, I had been given two wonderful gifts.
As we walked into the house, Roger went to his room while Max and I joined his dad and grandfather who were sitting in the living room. WE were about to begin a “meeting” in which we would be discussing Max’s schedule and some of his concerns. I found a spot to sit on a worn and sagging loveseat. Max was sprawling on the floor and periodically interjecting his thoughts and questions about his care providers. “I like Dave and Keegan, when are they coming? When is Jon coming back?“ Max spoke of his staff like they are his family and with great affection. Again, I felt that warm sense of wonder and gratitude that I was seeing what we as a respite care agency strive for every day. Our care providers intentionally do their work by building strong healthy relationships that create a sense of safety and love in the heart of the person they serve.
This is one of our primary values. Every care provider we hire, repeatedly hears me say, “The work we do is based entirely on your relationship with the person you serve.” In just a few moments, I was witness to the success of a plan that we carry out every day of the week. During the course of our meeting, we were visited again by Roger and also, the third man who lives in this home. Through the work of our care providers, the plan to support these adults in living as independently as possible is “coming together” and I love it.
Technology has become the center of everyday life for many children. A majority of the population revolve their lives around one form of technology or another. Children with developmental delays, such as Attention Deficit Hyperactivity Disorder (ADHD) or Autism Spectrum Disorder (ASD), can benefit greatly with the right apps. Apps can help them build positive coping mechanisms to assist with focus, calming, and task completion. The following website and apps can assist parents and children, including those with developmental delays in everyday life.
Social story creator- Lesson Pix
Yearly membership of $36 as little as $3 a month
I have been using this website to make social stories for some time. Lesson Pix is an easy-to-use online resource that allows users to create various customized learning materials. It is quite easy to navigate around,and user friendly. You can create numerous learning materials such as bingo, coloring sheets, short stories, certificates and much more! They offer a wide range of pictures to choose from and you can insert your own text. If you’re looking for ideas of a social story or want to create your own I would highly recommend this website.
Free- Apple App Store
This app allows for the visual sensory system to be accommodated in a mobile way. “Sensory Magma is a simple calming and relaxing visual app for people with special/complex needs of ALL ages. Magma generates lava style slow moving effects, which when combined with music from the iPhone or iPad music player can be relaxing and also stimulating.” (Sensory Apps Ltd, 2013) If working with someone who benefits from the visual sensory stimuli, it would be a great reward to be used after accomplishing or focusing on tasks.
Retrieved from: https://itunes.apple.com/us/app/sensory-magma/id647810604?mt=8
Give Me 5!!!!! Social Skills Multiplayer Game
$7.99-Apple App store
This social skills multiplayer game is a fun social skills App designed by a Developmental Specialist and a mom of a child with ASD. Its video learning is embedded into a gaming format. Real children are shown in real-life social scenarios covering eight areas of social skills: verbal and nonverbal communication, manners, self-awareness, situational awareness, perspective taking, emotional regulation, and gestalt understanding. There are five videos for each of these eight categories: manners, words, no words, understanding others, understanding me, calming feelings, people and places, and the big picture. It is meant to help children analyze social situations by looking for key social cues in these scenarios.
Retrieved from http://www.friendshipcircle.org/apps/browse/give-me-5-social-skills-multiplayer-copy/
If you try out any of these APPS or the Website, or find anything similar to share please don’t hesitate to send your comments to me at : firstname.lastname@example.org