Alzheimer’s is a very common disease affecting more than three million people in the US each year–most of them 60 or older. While there is currently no cure, there are numerous treatments available to manage the illness. If the person is diagnosed early, they may be able to utilize more treatment options, allowing them to maintain their independence for as long as possible. There are many warnings, signs and symptoms associated with Alzheimer’s disease and dementia but a few stand out as being very common.
While a certain level of memory decline is to be expected with aging, the difficulties associated with Alzheimer’s are much more pronounced. Typically Alzheimer’s will affect the short-term memory while older long-term memories can still be recalled. An example of this can be someone constantly asking the same questions even after they have been answered or not remembering something that happened moments ago. Forgetting a name or a date occasionally is nothing to be alarmed over but if it is a common occurence, it may be worth examining.
Along with short-term memory, those developing dementia will forget the names of objects as well as have difficulty with basic communication skills. It is common for the person to have trouble expressing their ideas or getting out the right words. Getting lost in the middle of a thought or repeating the same phrases multiple times are some other examples. They may also have trouble following along and participating in conversation.
A big indicator for Alzheimer’s disease and dementia are changes in mood and personality. Oftentimes the person will become upset more easily and stay upset as a general demeanor. Depression is usually related to dementia as well. An important sign to be aware of is the person’s personality changing noticeably. A shy person becoming more outgoing or vice-versa are two common examples of these changes.
Stemming from the impaired mental strength and memory loss is a general sense of confusion. This can also lead to the frustration and depression the person experiences. For instance, a person may lose their sense of direction and begin to have an impaired sense of judgment. They may also have trouble recognizing where they are and what is happening at the present time.
All of these symptoms go hand-in-hand with one another and influence other warning signs and mental changes for dementia. If you suspect that you or a loved one may be experiencing some of these warning signs, please don’t hesitate to speak to a doctor. Ignoring the problems won’t help them to get better but seeking treatment will help prolong the quality of life.
Making the decision to seek hospice care is an important one, but equally important is choosing which hospice provider to use. It’s not necessarily a difficult choice but it can seem daunting at first due to the sizable amount of care providers probably available to you.
We’ve talked about the benefits of not delaying hospice care , and it bears repeating since it is easier to choose the hospice right for you when you have a little time to decide. With those things in mind, let’s take a look at some helpful guidelines for selecting the right hospice provider for you and your loved ones.
Seek a recommendation from a trusted source
Most hospice providers offer the same basic services but not all may be the right fit for your situation. Word-of-mouth from a source that you know and trust remains one of the best ways to find an appropriate hospice provider. Your doctor and social worker should be able to direct you to some quality choices as well as have experience working with them and understanding the services they can provide. Friends or family members that have had experience with hospice care can also offer their unique and personal insight as well.
Make a list of questions to ask your preferred provider(s)
Specific and direct questions can be great guidelines in helping you to determine what is important for hospice care in your situation. When you meet with a community liaison or representative from the hospice provider, they will be able to answer your questions and explain how their care fits your needs. A few common questions to think about are:
- How quickly will care be implemented and symptoms managed?
- Which specific services does the hospice team provide or not provide?
- What will be the relationship with the family caregiver?
- What is the process for after-hours or weekend care, specifically in the event of a crisis?
How you feel about a specific provider?
While it is important to keep a clear and rational head during these difficult times, it is still a very emotional stage of life. Don’t ignore your own feelings with regard to the chemistry of the hospice provider and/or their representative. If everything sounds good on paper but it still doesn’t “feel right”, don’t be afraid to seek other options. Remember that this is more than a medical decision, this is a decision about the final moments and connections between you, your loved one and the hospice care team. There needs to be a personal connection of some kind for the best results.
Making the decision to pursue hospice care is not an easy one and, while we hope you consider Bridgeway Hospice, we wish you and your loved ones comfort and peace no matter which hospice provider you choose.
When a patient enters hospice care, who actually provides the care? The hospice care team is a full, interdisciplinary team including fully trained and certified nurses, aides, counselors and more. While it may be confusing at first as to which roles these team members play, they all fulfill vital needs within the scope of hospice care.
Physician – Every hospice team is overseen by a physician or medical director. This leader will closely monitor the patient’s illness, medications and care direction throughout the duration of care. The medical director physician may also work with the patient’s preferred doctor.
Nurse – Specially skilled, nurses are both caregivers and links between the hospice team, the patient and the family. They provide regular care for the comfort of the patient as well as the family. They also help the family to give the best possible support and care to the hospice patient
Aide – Certified Nursing Assistants (CNAs) also known as home health aides, they provide personal care to the patient such as help with feeding and grooming. These aides specially tend to the more sensitive and personal needs of the hospice patient in a kind and gentle manner.
Social Worker – Kind and listening, this part of the team helps tend to the emotional and social needs of the patient and their loved ones. They also help those in their care by providing access to community resources and assistance, such as transportation and financial aid. The social worker also handles the logistics of insurance, Medicare and other financial methods so that the family doesn’t have to.
Volunteer – A crucial piece of the hospice team, volunteers serve in many roles. They can provide compassion and companionship to hospice patients and their families. Often they will lend a helping hand through pet therapy, music therapy and story sharing with the hospice patient. Additionally, they provide support to the caregivers as needed.
Chaplain – In such a sensitive time as hospice care, it is natural for patients and their loved ones to seek spiritual guidance, in whatever capacity they choose. Hospice chaplains are there to honor and uphold the patient’s cultural and religious values while offering spiritual guidance in this difficult time. They will also work with leaders and clergy of the patient’s own faith, as requested.
Bereavement Counselor – A bereavement specialist is available for the family during and after a patient’s time with hospice. They are trained and skilled in providing individual counseling and support for over a year after the patient’s passing. Regular contact, education and support groups are just some of the ways bereavement counselors help guide the bereaved through this transition.
Bridgeway Hospice is very proud of all of the members of our hospice teams and works consistently to help them grow while bringing the best service to you and your family.
Bridgeway Hospice is proud to partner with We Honor Veterans, an awareness program and collaboration between the National Hospice and Palliative Care Organization (NHPCO) and the Department of Veterans Affairs (VA) with the goal of guiding veterans to a peaceful end of life. The NHPCO is the largest nonprofit hospice and palliative care organization in the US. It is committed to expanding access to hospice care and to enhance quality of life for veterans and their loved ones to “guide them through their life stories toward a more peaceful ending.”
“America’s veterans have done everything asked of them in their mission to serve our country and we believe it is never too late to give them a hero’s welcome home. Now it is time that we step up, acquire the necessary skills and fulfill our mission to serve these men and women with the dignity they deserve,” says J. Donald Schumacher, NHPCO president and CEO.
The We Honor Veteran program has 4 main goals:
- Promote education of veterans and their needs.
- Increase the organizations ability to serve veterans.
- Support community partnerships.
- Increase the access and quality of care available to veterans.
We Honor Veterans recognizes their community partners through a wide and comprehensive set of resources provided to the organizations to implement best practices for end-of-life care to the veterans in their charge. Through these resources and recognizing the special needs of our country’s veterans, hospice and palliative care partners can best guide our veterans and their families toward a peaceful rest.
In many cases there are special needs related to the veteran’s service, experience and possible traumatic events. Through We Honor Veterans, care providers can find the resources they need to give the best support to the veterans in their care.
Through programs like these and the partnerships and resources that We Honor Veterans provides, Bridgeway Hospice is proud to offer the care and compassion that our veterans have earned and deserve.
Bridgway Hospice volunteer Michael Shattuck was recognized with the national Points of Light award for volunteer service. The award is presented by the world’s largest organization dedicated to volunteer service for volunteers that inspire change and improve the world through their service.
Mr. Shattuck greets and directs patients at both Bridgeway Hospice and the Wellstar Health Center Infectious Disease unit. He is a friendly blessing to both patients and staff alike, welcoming and assisting however he can. His motivation to contribute stems from his own experience as a patient.
Mike was suffering from multiple illnesses for four consecutive years. He would go to a clinic, get treated, and come back home. When his medical conditions were getting treated, Mike had nobody visit him. His personal experience motivated him to help others in need of companionship and emotional support. In July 2017, he joined Bridgeway Hospice with a clear goal of contributing towards providing with the most comfortable and compassionate end-of-life experience.
Speaking of the award Michael says he is “honored to receive this award. My interpretation of Christianity is to render aid, succor and comfort to the poor, sick and dying.” He goes on to say that “you either contribute to the world or take from it. Like it or not, we are all part of one global organism.”
Points of Light engages more than four million volunteers in 30 million individual hours of service each year. They recognize a special volunteer five days a week in the US and the UK.
“The Daily Point of Light Award recognizes exceptional individuals who are using their time, talent, voice and treasure to improve the lives of others,” said Jaqueline Innocent, VP of Recognition Programs of Points of Light. “These points of light, like Michael Shattuck, make an impact on individuals while also helping build resilient communities.”
Michael Shattuck continues to inspire others with his work and hopes to show others they can make a difference in their communities too.
Bridgeway Hospice is committed to bridging the way to comfort and peace. Just like Mike’s service and commitment to hospice patients, hospice volunteering is a very rewarding experience that will challenge and enrich volunteers from all walks of life.
To learn more about Michael Shattuck’s work, visit http://www.bridgewayhospice.org/volunteer/ and http://www.pointsoflight.org/programs/recognition/dpol/awards/6238
A common concern with hospice care is the use of morphine and some myths regarding its use. In our last post we discussed an overview of these concerns and why hospice uses morphine. This week we’d like to address the most common objections to its use and some of the myths surrounding that.
“But morphine is for drug addicts.”
While it is true that there is a growing health crisis involving opiates, the sort of Morphine administered in a hospice setting is quite different from the drugs at the center of the opioid addiction crisis. The type of opioids involved in the current health crisis are usually prescription pills unlike the vials, syringes and patches used in hospice.
Morphine use in a hospice setting also consists of much lower, managed doses administered by a trained healthcare professional. An essential part of addiction is the drug-seeking behavior. Hospice patients generally do not exhibit this behavior. When their pain is managed, they don’t go after more opiates. It’s also a good idea to keep a log near the medicine to track the timing, volume and effectiveness of each dose.
“Morphine will make my loved one sleepy and they won’t be themselves.”
Allowing a patient and their family time to share together is one of the primary goals of hospice. Morphine is only given to manage pain and symptoms, not as a means to sedate the patient or make them “high” so that they are not themselves. Morphine, especially in low doses, helps with the patient’s symptoms so that they may be more of themselves than a product of their ailments. It does not affect them mentally or change their personality.
Just as with any medication, when first starting the patient may take some time to adjust. This may include initial drowsiness but after the first few days, these effects go away. Every person is different however, and some may react in different ways to opioids. In these cases it is up to the patient, their family and their care team to consider alternate forms of pain management.
There is no evidence that opioids speed up the process when a person is already terminally ill as long as they receive the proper dose to control their symptoms. The opposite may actually be true. Troubled breathing and constant pain drain hospice patients of their energy and strength. When these symptoms are relieved, the patient can be made more comfortable and even slow down the rate of decline.
This myth stems from the circumstances in which morphine is used. If a patient is in hospice and prescribed morphine, they are usually in the advanced stages of terminal illness. The person is in the process of transitioning with or without the morphine. Sometimes the patient’s final moments may come shortly after a dose of medication, but this is just a coincidence.
Hospice seeks to provide a comfortable passage through the end of one’s life. Hospice never intends to speed up this passage, only to make it more peaceful. Morphine is nothing more than a tool to aid in this goal.
The Morphine Myth
Morphine has a reputation as a strong and dangerous drug so why does hospice use it? When used properly, morphine has several very helpful purposes. While it is not a medication to be taken lightly, there are a lot of misconceptions out there—especially with regards to hospice care.
Morphine is a naturally derived medicine in the same class of opioids as codeine, hydrocodone and oxycodone. It is used to treat sharp, acute pain and it also relaxes the lungs and makes it easier to breathe—a common ailment of those that require hospice care. With reduced pain and easier breathing, the hospice patient can eat, sleep and maintain a higher quality of life with comfort and dignity.
Amid our nation’s current opioid crisis, many myths persist regarding morphine’s legitimate use. These myths result in less than optimal pain and symptom management for hospice patients, but the confusion infused by these myths into the decision-making process can often lead to highly complicated grief for loved ones following a patient’s death.
Dr. TJ Hawkins, Ph.D., Bridgeway Hospice’s Director of Program Services, notes that in over 10 years of experience as a Grief and Bereavement Counselor, he has seen many loved ones struggle greatly from issues of anger and guilt regarding the circumstances surrounding the use of morphine at the end of life. Sometimes these complicated grief factors can lead to serious cases of depression and can highly debilitate their post-loss life. Dr. Hawkins recommends approaching the use of this drug with an open mind and seeking a thorough education of the uses of morphine from your healthcare provider.
Many hospice patients never even take morphine because they don’t need to. It is the degree of pain that the person is in that determines the medication. Hospice practitioners start with the mildest form of medicine and work from there. If it is appropriate that the patient be given morphine, the initial doses are low and slowly increased until they relieve the person’s pain and shortness of breath
While morphine has a reputation as a dangerous boogeyman and a hard drug, it is also a valuable tool for improved quality-of-life for hospice patients. Opioids properly administered in a healthcare setting are nothing to be afraid of. By reading this, you are already doing the right thing by researching and learning more about the topic. Take your time to consider the benefits of this medicine to your loved one’s comfort and dignity.
We all know it’s not easy to be a caregiver. Taking care of someone else is very rewarding and often necessary, but it can also be very costly. Caregivers are more likely to have a chronic illness such as high cholesterol and blood pressure. Caregivers are more likely to abuse alcohol, tobacco and other drugs. Studies have estimated about half of all caregivers to be clinically depressed. Additionally, caregivers have a rate of death about 1.5 times higher than non-caregivers.
If you are a caregiver, this may not even surprise you—caregivers know all too well the demands and consequences of this selfless service. We highlight them here only to emphasize the importance of self-care—or caring for the caregiver. While you may not be able to remove a strong illness from a loved one, it is within your capacity to take care of your own needs which will allow you to continue providing the best possible care.
First of all, carve out some time to take stock of the situation and your state within it. Think honestly about what is stressing you out, exactly, and why. Identify the things that are within your control and those that aren’t. Accept your feelings as they come and without guilt. Think of things in as positive of a light as you can and your feelings will follow. Set some goals for yourself as far as de-stressing and healthier life choices go.
Your mindset, feelings and overall well-being can also be affected by your physical health—and maybe more than you think. Exercise, for instance, leads to better sleep, reduced depression and increased energy. Our diet affects our whole self as well. So, while it may seem impossible to eat healthier or find time for exercise while caregiving, even a little bit can go a long way. If you are meeting with a doctor with your care-recepient, talk to the doctor about your own health and concerns.
Just as the person you are caring for relies on you for support, you too need someone to lean on. Perhaps this is just a friendly ear to listen, or it could be hands to help with daily chores. Think of people that could help and then find a good time to ask. Let your helper choose a way to help you, such as errands, relieving you of some care-giving duties, etc. but remember not to push too hard. Some people, even those very close to you, may be unable or unwilling to help. Don’t let this come between your relationship, simply ask someone else. Help comes from the most unlikely of places so don’t be afraid to ask those who weren’t the first ones you thought of.
Finally, don’t be ashamed to take advantage of respite care. Respite care is a benefit offered by Bridgeway Hospice and other hospice organizations to hospice patients in order to relieve the caregiver for up to a week at a time. Eventually, you will need this time, whether from a hospice or someone else, to allow yourself time to rest and recharge. Just as you can’t pour from an empty vessel, you can’t care for others when you haven’t cared for yourself.
If you’re reading this, chances are high that you’re interested in hospice care. While not an often-discussed concept, it is a very important and highly beneficial option for terminal diagnoses. Consumer Reports and The Washington Post recently published a great story outlining the benefits of choosing hospice care sooner than later. According to a recent study , most people that choose hospice care wait too long to do so and at the expense of their symptoms and quality of life.
The study’s author, Dr. Thomas Michael Gill, goes on to say that if hospice is delayed too long, its benefit may be reduced.
People who put off hospice care might spend months in and out of hospitals, with their families struggling to attend to them. “At some point, patients and their families and doctors realize that hospice is appropriate, but that happens perhaps later than it should,” says study author Thomas Michael Gill, a professor of medicine, epidemiology and investigative medicine, and the Humana Foundation professor of geriatric medicine at Yale University. “When folks are referred to hospice only in the last days of their life, it’s difficult to have a meaningful benefit.”
The study followed over 750 people over age 70. More than 40% of them entered hospice toward the end of their lives but the average time they spent there was less than two weeks. Dr. Diane Meier, the director of the Center to Advance Palliative Care explains that these people could have avoided many hospital visits and suffering of symptoms by choosing hospice care earlier.
Many of their most debilitating symptoms—including pain, nausea, depression, and shortness of breath—decreased substantially only after hospice began. That means many patients might have been suffering needlessly for months, says Diane Meier, M.D., the director of the Center to Advance Palliative Care and a professor of geriatrics and palliative medicine at The Mount Sinai Hospital.
Health crises, emergency-room visits, and hospitalizations can become routine toward the end of life, and “that is a very distressing and stressful experience for patients and family members,” says Meier. “Remaining in your own home [something hospice makes possible], a familiar place with familiar people, is safer and offers better quality of life.”
Common reasons people may delay hospice care are often rooted in misconception. For instance, hospice is not a death sentence. Patients may leave hospice care at any time and it does not have a time limit—only a standard time of six months which can be extended.
“Many people are fearful that if they choose hospice, they won’t be able to return to mainstream medicine should they improve or new treatments become available—that’s not true,” says Meier. “Hospice is not a one-way street.”
And some evidence suggests that hospice patients actually live just as long or even longer than similarly ill patients who are not in hospice.
So, when is the right time for hospice? Meier lists two main criteria: difficulty with self-care through daily life as well as debilitating symptoms such as pain, shortness of breath and depression. Hospice helps with both of these factors. According to Dr. Gill, the most important factor of all, however, is honest communication.
“It’s challenging to have honest discussions with patients and families about death and the dying process,” says Gill. “But leaving the conversation until the very end makes it more difficult.”
So, you’ve decided to try volunteering with hospice and you want to know how to get started. If you haven’t yet made this wonderful and life-impacting decision, check out our article on the benefits and rewards of volunteering with hospice.
Bridgeway Hospice is a great hospice to volunteer with and, if you’re in the Atlanta area, we have a location near you. The process is thorough, but you will have someone guiding and assisting you throughout the time you are with us.
Bridgeway serves all of Metro Atlanta stretching through Northeast Atlanta and into the Athens area ( Click here to see a list of our locations ). As a volunteer you are welcome to volunteer as little or as much as you are available. No long-term commitment is needed to volunteer with Bridgeway Hospice.
After initial contact is made through phone or email, a volunteer coordinator will contact you to set up an orientation meeting. This first meeting will mostly be an informative session including a comprehensive training program. Topics range from hospice philosophy and services offered to individual needs and boundaries. This meeting is important to determine how you can best serve the patient through your strengths, skills and talents.
Bridgeway Hospice’s volunteer coordinators try to set honest and real expectations for new volunteers into what can be an impactful and rewarding volunteering endeavor. “I give them the true facts of what this experience could be and what to expect. Volunteers often tell me ‘it was exactly what you said, and I appreciate it,’” says LaShonn Waller, one of Bridgeway Hospice’s volunteer coordinators.
After the first meeting, the local volunteer coordinator will match you with patients based on their proximity to you, and the needs of the patient relative to the volunteer services you can provide.
On the first day of volunteering with a hospice patient, the volunteer coordinator will accompany you on the visit. This initial visit will be rather short and also include caregivers and other staff to determine if it is a good fit for you both. Additionally, the volunteer coordinator may take you to meet other patients in this same manner on the same day to determine which patient will be the best fit for you.
The coordinator will keep you updated and current, especially with regard to the patient. “I have 35 volunteers and I talk to each one of them every week to give them updates and just to see how they are doing,” Waller says.
Volunteering with Bridgeway Hospice will help you gain great personal satisfaction from knowing that you have made a positive impact in another person’s life. For more information please contact any of our wonderful volunteer coordinators at www.bridgewayhospice.org/volunteer/