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?
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This past week has been awesome at Breaking Barriers Today (BBT) because the weather has been so nice and we’ve been able to really appreciate it. Everyone has been able to go outside and enjoy the sunshine with their friends and care providers. We are all ready for spring to arrive because we can have even more time outdoors!
This past month we have had plenty of staff and volunteers making it easier for us to utilize all of the space available to us a whole lot more. This has been a real benefit for everyone because we are able to do so many different activities. We have themed lesson plans for every week which has been fun because we get to plan a lot of games and art projects around the theme. The lesson plans keep us on schedule so things run smoother and all of the participants can get the most out of their day.
A new exciting thing that happened this past month was being able to join the Gier After-School Program for their Mileage Club. This is so significant because our participants get to spend time with all of the kids that come to Gier after school. For the Mileage Club we help set up the cones in the gym and then we turn on some music and all walk (and roll) together. Everyone seems to really enjoy it!
Our Numbers Are Growing this Spring
BBT is continuing to grow in numbers of participants, and we expect our volunteer count to grow as well. Recently some students from the MSU Fraternity, Pi Kappa Phi, have shown interest in coming to help out at BBT. They have 70 brothers in their fraternity, and would have some of these brothers volunteering and spending time with us at Breaking Barriers Today. Pi Kappa Phi is a fraternity that has a close relationship with Helping Hands Respite Care and volunteering is just another way to bring them closer.
We are also starting to work on summer planning so we can have BBT and the Gier Summer Kids Camp enmeshed as much as possible. This summer is going to be a lot of fun and full of special activities so we will keep you updated on the planning once it gets farther along. Also, just a reminder to our families that Spring Break is coming quick, April 4th – 8th, so please keep us posted on your needs so we can schedule staff appropriately.
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)