“There are four kinds of people in the world: those who have been caregivers; those who currently are caregivers; those who will be caregivers; and those who will need caregivers.” Rosalyn Carter, former First Lady.
These words from Rosalyn Carter made me reflect on the service that I provide regularly as the volunteer coordinator via Kate’s Memory Café for Helping Hands Respite Care. It is quite amazing to me that even in the thick of things, there are many individuals who do not self-identify as a caregiver. I am gob-smacked at the idea that so many of these participants who are experiencing a life-turned-upside-down in service to their loved one with dementia or Alzheimer’s disease, seem so oblivious to the toll this vital and loving service may be waging on them personally. There is a numbness that creeps in and steals away the joy in simple things like laughter among friends, the pleasure in a nice meal shared, or the satisfaction and balance that comes from exercising self-care in things large and small. Over time that numbness turns into a bone tiredness which breeds a sense of helplessness and hopelessness. And, that can’t be good for the caregiver or the one in their care.
Purpose of Kate’s Memory Cafe
After 2plus years of facilitating this monthly event, I recently took the opportunity to ask those in attendance why they thought we were gathered together for Kate’s Memory Café. The answers were obvious and sometimes sweet…but not exactly what I was listening for. My commitment to the Memory Café has been to help the primary caregivers in the group whether they were a spouse, significant other, child to an aging parent, a sibling, a grandchild, a neighbor, or best friend…to recognize the critical importance of claiming respite for themselves and for their loved one.
What I have learned is that if someone does not self-identify as a caregiver it is a real uphill battle to help them understand how important respite truly is for them. A few years ago, after sharing some stories about the work of Helping Hands Respite Care to a group of city employees, an Emergency Responder shared his personal on-the-job experience with those people in the community considered to be medically vulnerable. He said he and all his co-workers know the addresses of all of the vulnerable households in the city. He confessed his great surprise that upon being called out to respond to those vulnerable households…50 percent of the time it was not the person with a disability needing help! It was the caregiver needing the emergency medical response.
What that tells me is that these caregivers had worn themselves out to the point of illness and vulnerability. My despair comes from knowing that there are more people out there in our community who need to learn more about respite care and need to be emboldened to claim some for themselves ….because it will be good for the one they are caring for and for themselves.
Kate’s Memory Café is a free service to the community. It is offered to the public FREE of Charge through the generosity of sponsors in our community like AF Group and McClaren Greater Lansing. Kate’s Memory Café is for any care couple. The Memory Café convenes on the second Sunday of the month at the offices of Helping Hands Respite Care where the room that normally holds the Adult Day Services Program operates Monday thru Friday is transformed into a café with table clothes, decorations, live music, snacks, a meal, and fun activities planned, and most important an informational break for the caregivers in the group.
Caregivers are encouraged to invite other people in their circle who might become part of their natural support system of respite care providers. Those that wish to attend are asked to RSVP so that food and activities can be planned accordingly.
To learn more or to RSVP email firstname.lastname@example.org or call 517-242-7355. In addition to finding caregivers to serve, we are always looking for volunteers to help create the café. We need entertainers willing to share for a minimum of 30 minutes of music; volunteers willing to help set up, clean-up, engage with individuals with memory loss, and join us for the meal.
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.”
We love our young people who visit the Respite House! Just as important are the families who utilize our services in order to take a much needed break (respite) over an occasional weekend.
We know it is not easy for caregivers to entrust their loved one to our care without worrying or having some anxiety. Sometimes the stress and tension can be seen in the caregiver’s face and body language as they come through the door and proceed with the weekend “check-In.” The amazing part of this journey however, is seeing the caregiver’s “smile and restful look” as they return for “checkout.” The caregivers see all is well with their loved one and how much they have enjoyed their stay away from home. Those same care giving parents/guardians gladly notice the art projects, baked cakes and talks about the singing and dancing, as well as the many other happenings such as playing outside in the park and taking walks along the trails that surround our welcoming “Respite House.” There is a sigh of relief that only proper “respite” could bring month after month of visiting.
Apparently, our true mission becomes clear to our care giving families when they start to realize everyone deserves and needs a break now and then. From the countless cumbersome responsibilities along with the daily draining environment of providing for loved ones with special needs and timely requirements, respite care naturally becomes a win/win. The children/young adults benefit from the mini reprieve while socializing with others who also are creating new and building lasting friendships with each other, and at the same time, their care providers are able to have that well deserved break.
For more information or questions about the Helping Hands Respite Care’s Respite House, please contact our office at 517-372-6671 and ask for Supervisor, Dawn Todd (Ext. #106)
Dotty’s Ten Tips for Communicating with a Person Living with Dementia
Here are ten tips you can use to improve your life and the life of an individual living with dementia.
1. You know what makes me feel safe, secure, and happy? A smile.
2. Did you ever consider this? When you get tense and uptight it makes me feel tense and uptight.
3. Instead of getting all bent out of shape when I do something that seems perfectly normal to me, and perfectly nutty to you, why not just smile at me? It will take the edge off the situation all the way around.
4. Please try to understand and remember it is my short term memory, my right now memory, that is gone. Don’t talk so fast, or use so many words.
5. You know what I am going to say if you go off into long winded explanations on why we should do something? I am going to say No, because I can never be certain if you are asking me to do something I like, or drink a bottle of Castor oil. So I’ll just say No to be safe.
6. Slow down. And don’t sneak up on me and start talking. Did I tell you I like smiles?
7. Make sure you have my attention before you start blabbering away. What is going to happen if you start blabbering away and you don’t have my attention, or confuse me? I am going to say No – count on it.
8. My attention span and ability to pay attention are not as good as they once were, please make eye contact with me before you start talking. A nice smile always gets my attention. Did I mention that before?
9. Sometimes you talk to me like I am a child or an idiot. How would you like it if I did that to you? Go to your room and think about this. Don’t come back and tell me you are sorry, I won’t know what you are talking about. Just stop doing it and we will get along very well, and probably better than you think.
10. You talk too much, instead try taking my hand and leading the way. I need a guide not a person to nag me all the time.