I learned something new and beautiful today and I want to to share it with others. Please take 8 mins and watch the video below. It brings musical knowledge as well as spiritual growth. What a truly amazing God we serve.
Having the ability to cook without worrying about falling has helped me feel more confident. Using my LifeGlider has given me the use of my hands while having better balance. I have always enjoyed cooking for my family, but when I lost proprioception and balance it was almost impossible to stand and cook using a regular walker because I had to constantly had look a my legs/feet so that my brain could register where my legs were at all times otherwise any slight weight shift would send me falling. So blessed to have found a great device that allows me to stand up straight, walk more correctly all the while being safe.
Hospice is a belief in specialized care. This viewpoint accepts death as the final stage of life. Hospice care is end-of-life care or palliative care which is provided by health professionals. Palliative care is treatment to help relieve disease-related symptoms, but not cure the disease; its main purpose is to improve your quality of life.
The goal of hospice is to allow patients to continue an alert, pain-free life and to manage other symptoms so that their last days may be spent with dignity and quality, surrounded by their loved ones. Hospice affirms life and does not accelerate or postpone death. Hospice provides humane and compassionate care for patients in the last phases of incurable disease so that the person may live as fully and comfortable as possible. The person may have lived a long life, but they deserve to be afforded dignity and compassion. Our elder population often gets over-looked when it comes time to let them complete the life cycle.
In order for a patient to be placed in hospice they must have a terminal illness such as cancer or an end-stage diagnosis. They must also be expected to live 6 months or less. In the elder population the patient usually has an end-stage diagnosis of dementia, Alzheimer’s, cardiac, renal insufficiency, or debility. Of course, there are other diagnoses, but these are the most common.
Hospice care begins when the patient is admitted to the program because of a terminal illness such as cancer or end-stage illness, which generally means that a hospice team member visits the home or long term care facility to learn about the patient’s needs. If the patient is elderly and the hospice is Medicare-certified then the hospice company must provide nursing, pharmacy, and doctor services around the clock. If the patient resides in a nursing home the hospice will pay for the nursing care, but they do not pay for room and board charges. Those charges will be paid either through private funds or via Medi-cal if the patient qualifies for the service.
It is important to know that home hospice may always require that someone be home with patient. This may be a problem if they live alone, or if other people in the home have full-time jobs and work outside the home.
Who is involved?
A team of professionals
In Hospice care there is a team of professionals and some volunteers that help provide the care. The health care team also called an interdisciplinary health care team manages hospice care. This means that many interacting disciplines work together to provide care for the patient. Doctors, nurses, social workers, counselors, home health aides, clergy, therapists, and trained volunteers interact and provide care for the patient and their family. Each team member offers support based on their expertise. The team treats the person rather than the disease; it focuses on quality rather than length of life. They not only focus on the care of the individual that is ill but also on the family. They give medical, psychological, and spiritual support.
Hospice volunteers play an important role in developing and providing hospice care. They may be health professionals or lay people who provide services that range from hands-on care to working in the hospice office or fundraising.
What Services are provided?
Coordination of care
The interdisciplinary team coordinates and supervises all care 7 days a week, 24 hours a day. This includes when the patient resides in a nursing home. This team is responsible for making sure that all involved services share information. This may include the inpatient facility, the home care agency, the doctor, and other community professionals, such as pharmacists, clergy, and funeral directors. The patient, the family and the caregivers are encouraged to contact hospice team if any problems arise. It does not matter what time of day or night the problem occurs. There is always staff on call to help with whatever may arise. Hospice care assures the patient and their family that they are not alone, and help can be reached at any time.
In a long-term care facility and/or assisted living facility the staff at the facility will also act on behalf of the patient and family. The hospice company does not remain at the facility unless it is an inpatient hospice facility. The family or patient can speak to the charge nurse at the facility to have questions answered.
Hospice care staff members are kind and caring. They communicate well, are good listeners, and are interested in working with families who are coping with a life-threatening illness. They are usually specially trained in the unique issues surrounding death and dying. Yet, because the work can be emotionally draining, it is especially important that support is available to help the staff with their own grief and stress. Ongoing education about the dying process is also an important part of staff support.
While you are in hospice, your family and caregivers may need some time away (this pertains the patient that is residing at home).Hospice service may offer them a break through respite care, which is often offered in up to 7-day periods. During this time the patient will be transferred out of the family home to a hospice facility or to a long-term care facility. This allows families to take a mini-vacation, go to special events, or simply get much-needed rest at home while the patient is cared for in an inpatient setting.
Pain and symptom control
The goal of pain and symptom control is to help the patient be comfortable while allowing them to stay in control of and enjoy your life. This means that side effects are managed to make sure that the patient is as free of pain and symptoms as possible, yet still alert enough to enjoy the people around them and make important decisions. With the elderly population the family would be more likely to make decisions regarding the medications and pain control by discussing any issues with the hospice nurse. In the elderly population there is often a diminished mental capacity making it difficult for an elder to make proper choices. Keep in mind that if the elder is still able to make decisions that the decisions will remain in their control.
Hospice care also tends to the patient’s and family spiritual needs. Since people differ in their spiritual needs and religious beliefs, spiritual care is set up to meet the patient’s and/or the family’s specific needs. It may include helping them to look at what death means to them, helping them say good-bye, or helping with a certain religious ceremony or ritual.
Bereavement is the time of mourning after a loss. The hospice care team works with surviving loved ones to help them through the grieving process. A trained volunteer, clergy member, or professional counselor provides support to survivors through visits, phone calls, and/or letter contact, as well as through support groups. The hospice team can refer family members and care-giving friends to other medical or professional care if needed. Bereavement services are often provided for about a year after the patient’s death.
Through regularly scheduled family conferences, often led by the hospice nurse or social worker, or in the case of a long-term care facility the IDT members family members can stay informed about the patient’s condition and what to expect. Family conferences also give everyone a chance to share feelings, talk about expectations, and learn about death and the process of dying. Family members can find great support and stress relief through family conferences. Conferences may also be done informally daily as the nurse or nursing assistant talks with patient and their caregivers during their routine visits.
Where can Hospice care take place?
Hospice care can be given in the patient’s home, a hospital, skill nursing facility, or private hospice facility. Most hospice care in the United States is given in the home, with a family member or members serving as the main hands-on caregiver.
Hospice is a wonderful service for anyone one with a terminal illness or an end-stage illness. But one of the problems with hospice is that it is often not started soon enough and in the case of the elder population not started at all. Sometimes the doctor, patient, or family member will resist hospice because he/she thinks it means that they are giving up or that there is no hope. Of course, this is not true. If the patient’s condition improves the patient would be re-evaluated and possibly taken off hospice if the improvement changes their life expectancy. The patient can always be placed on hospice later if their condition worsens. The hope that hospice brings is the hope of a quality life, making the best of each day during the last stages of advanced illness.
Each day is different. Some days are great in that the pain is down usually around a 3 to 5 on the pain scale. Other days no matter what I do the pain remains high at about 5 to 9. There is no reason for it as my medications remain the same. Why? This is the one of the questions that plague me. I am learning to deal with so many things, but the one big thing is letting go of the why and learning to live in the now. This is beyond difficult.
Some days it feels like God is gone and has left me. He hates me. He not only took the use of my legs, but has allowed me to continue to hurt at levels that are unbearable at times. I have become isolated from those around me as their lives cannot accommodate someone like me who is slow moving and unreliable because the pain. My only communication with “friends” is often via things like Facebook or Instagram. It is a lonely place to be. The reality is people don’t just want to sit around watching TV, playing a game or talking with someone who is hurting because we are not fun to be around. Besides their lives don’t have time for people like us who are in constant pain and disabled.
Learning to let all of that go and see the “bright side” is not easy. Realizing that God is still there and He really does love us seems like a dream. For me, deep down I know that God is real and He loves me. The enemy loves to sneak in and make me doubt everything. So often questions like, can my family still love me the same? How can I still be whole? How can I take care of my family as I can barely take care of myself? Each day seems to bring new questions and doubt. It sucks. It doesn’t help when the people you love are constantly telling you things like- Pick up you feet, bend your knees, don’t bend over and pick things up. As for me, I already know my body doesn’t work right I really don’t need to be reminded constantly.
So how do I let is all go? I don’t know at this point. Each day all I can do is pray constantly and do my best to move forward. With God’s help it is my hope that I will find a purpose for my life and I can learn to let all of this go accepting what is happening to me.
Having lost the feeling in my legs and living in pain made the thought of dancing seem impossible. My husband and I attended a Halloween party over the weekend. I was just excited and happy to be there as last year I was in the hospital recovering from one of the multiple surgeries.
As I sat next to my husband watching people come into the party dresses as various characters, I turned to find an old childhood friend. She recognized me immediately, we talked and made me smile and laugh. She vowed to get me up to dance. My fear that I was going to be unable to do so set in. How could I dance being that I walk with a walker and I can only feel my left leg? At least my pain level was fairly low at a 5.
I stood next to my husband near the seating area and moved a bit to the beat of the music. Oh, how I missed dancing and moving. After all, I was a dancer most of my life performing in various places over the years. It has been one of my the biggest losses. Loosing the use of my legs, not being able to feel or move is one of the hardest things I have had to deal with. The thought of not being able to stand cheek to cheek with my husband and move slowly to the music help bring my spirit down.
Standing and moving felt amazing. It was a bit scary, but invigorating at the same time. My pain level remained low at about a 5. My friend came over and signaled, “Let’s go.” So I followed her with my walker out onto the dance floor. I began to move to the music. It felt great. I had to keep looking at my feet as without looking at them my brain has no idea where my feet are in space and I will fall over. I held on to my walker and began to move my feet and body. It was an amazing feeling. I never thought I was going to be able to do this again. But yet again, God blessed me with a special gift.
For the brief moment in time I felt great. My pain was low, my legs held me up and moved to the beat. I smiled and felt alive. I will cherish this moment as I don’t get many of them. So thankful for my blessing. Lord, thank you for all you give me. I still struggle from day to day as my pain fluctuates. I only hope that as I continue to go to physical therapy that my legs with get stronger and work better. I hope that I will move from a walker to a cane. That I may regain some mobility and self-worth. I hope that my pain level will drop so that I can enjoy more of my life. For now all I know for sure is that God continues to be with me and watch over me. He continues to help heal me. For this I am blessed.