MSU Department of Kinesiology Partners with Helping Hands Respite Care
Not long ago we had the privilege of presenting to the head of the MSU Department of Kinesiology and found that we were an ideal match to the students of this department wishing for relevant work opportunities in our various programs. Student are lining up for internships to provide first rate care to the families we serve.
At this point we have five new caregivers in our pipeline and expect that we will end up enjoying the benefits of a great working relationship with this university department to the tune of 8 to 10 students per school year or semester.
Over the past two years we have been so challenged to find, train and compensate caregivers and have been broken-hearted when we had to leave shifts open for lack of willing workers. It might be too soon to say we have a permanent solution, but with some help and good luck we could see a substantial improvement in our staffing numbers. If you know someone in any of the other relevant schools at MSU or even the local community colleges we would deeply appreciate the referral. The areas of study which seem to match up really well include: pre-med, nursing, kinesiology, family studies, gerontology, social work, and psychology.
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:
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)