Tag Archive | Spianl Cord Injury

Understanding Hospice Care

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.

Volunteers

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.

Staff support

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.

Respite care

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.

Spiritual care

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 care

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.

Family conferences

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.

Motivate one another

 

Make every effort to add to your faith goodness; and to goodness ,knowledge; and to knowledge, self-control; and to self-control, perseverance; and to perseverance, godliness; and to godliness , mutual affection; and to mutual affection, love.

1 Peter 1:5-7

Motivate: to provide with a motive IMPEL

Impelto urge or drive forward or on by or as if by the exertion of strong moral pressure.

We can all motivate each other via our actions and our words. Each morning we open our eyes we have an opportunity to choose to be positive or negative. Those of us living with chronic illness and pain may find it difficult to be positive when we hurt, but even a simple smile and making eye contact can change someone’s day.

Each of us have an opportunity each day to motivate each other by doing things with love and showing others via good works. There appears to be turmoil everywhere we look. Recently in my small city of Yucaipa protests were held. Most were peaceful, but one got out of control. People were fighting, business owners took up arms, and both sides behaved in a negative manner. Negative behavior like this creates separation and brings people down instead of brining us together and motivating change.  We are all human and not the color of our skin nor the way we dress.

Instead of being negative we can motivate each other by supporting one another and respecting each other’s views even when we do not agree. But we must first learn to listen to what is being said and not just hearing. There is a difference between hearing and listening. We can hear something without really listening. For example, we hear sounds all around us at any given moment, often we just tune out the background noise, but if we concentrate, we can pinpoint where each sound is resonating from and what is making each noise. When we really listen to what we hear, each of the sounds has meaning.

Have you ever heard someone talking but not really listened to them? I know I am guilty of this. For example, when one of my children was trying to convince me to let them participate in a particular event and I have already decided the answer is no because I know I’m right and they are wrong. So, I continue doing the dishes and making mental notes of what I need to buy at the grocery while half listening. My actions show them that their words are not important. But when I take the time to really listen to them and make eye contact, I find that they have some good ideas that I had not even considered. Often their ideas are quite different than mine, but that does not mean that they are wrong. We must be careful not to make someone else’s words our background noise. Because when we really listen, we build bridges instead of walls.  So, before you respond negatively take a moment, really listen, and think about what is being said. Sometimes people say things because they have experienced a situation that we cannot comprehend. The old saying,” You can catch more flies with honey” …comes to mind because a small act of kindness such as listening can change a person’s view and heart.

When we take the time to listen and treat others with love and respect, we motivate each other. We encourage change and promote togetherness not division and malice. It takes a lot of self-control to surrender to the fact that others may have a better idea or solution to a situation. During these trying times we all can be the catalyst to help urge others to keep moving forward by showing others that their words and lives matter by listening and not just hearing. Listen to others just as our Father listens to us because it brings hope, understanding, and motivation for change.

 

Little improvements

Standing doing my hair without any assistive devices! My balance has improved thanks to doing yoga with an instructor 2x per week (5 weeks so far) and using my LifeGlider.

I did have a recent fall🤪. I was bending down to pick something up off the floor, I had undone the safety belt on my walker as it was restricting me,there was water on the floor and my legs slipped causing me to loose my footing and down I went. Not smart on my part. Just because my balance and proprioception have improved some does not mean I don’t have to continue to pay attention to what I am doing. I still have to remind myself of walking hill to toe, to pick up my feet, and not to lean forward. Old habits are hard to break!

I am still excited about all the progress I am making. I know I am not doing this alone. Thank you everyone for your continued prayers and your words of encouragement. I know God is with me and because of this anything is possible. His promise to be my side every step of the way helps to keep me moving forward even when there are set backs.

Little moments

In our lives we all have those little moments (small encounters) when you walk away smiling and thankful for the experience. I recently had such a time. My family and I had gone to the movies, and when it was over, it was time for a much-needed bathroom break. Of course, there was a line after all it was the womens’ bathroom. While waiting in line there were two young girls and their mother. One of the girls looked to be about 5 and her sister was a bit older. The younger girl said to her mother in a not so quiet voice, “what is wrong with her? Why can’t she walk and stand?” The mother looked mortified and attempted to quiet her daughter. I turned, smiled, and explained to the girl that I have a spinal cord injury but in terms she would understand. I said, “I have an owie inside my back.  It makes it hard for my brain (pointing to my head) to tell my legs what to do. My signals get mixed up.” She then asked, “We you born this way?” I told her, “told her no, my back got really sick about two years ago and I had to have special surgeries to my back. One of the surgeries made me brain and my legs stop talking to each other like hers do.” I also explained that I use my walker to help me get around and it helps me to keep from falling because I lose my balance frequently. As I finished washing my hands I turned to the mother and girls and said, “Thank you for asking questions. I love questions. “

This small encounter was a blessing. Often people just stare or stare and point. I can tell that they have questions and are guessing as to why I am in the state I am. I only wish more people were like the younger children who ask or at least speak out loud and say things like, “what is wrong with her? Or “how come she can’t walk?” Young children often have no filter and are curious. They don’t worry about or intend to be hurtful. So, why should I get upset by their comments or questions?  Instead I view them as a blessing. It is another opportunity to help educate others about my conditions and show them that being different is not a curse.  

I believe these little encounters are little nudges from God. He brings people into our life for different reasons and for different amounts of time. Some are brief and others for long periods of time. But weather brief or not I don’t want to miss the opportunities (blessings) that I am given.

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We may not be where we thought we would be but…

Your life may not be where you always envisioned it would be just yet, but all you have is now. Remove the unrealistic expectations and unfair demands of perfection you’ve placed on yourself…close your eyes…and just dance. Really experience life. Really experience God’s love. Enjoy the knowledge that you belong to the Lord and feel the joy of sharing Him with others. Enjoy the life God has given you as you cast every care on Him!

Prayer: Father God, thank You for the life You have given me. Show me how to fully live it without placing demands of perfection on myself. Help me to just dance, just live, and enjoy the gift of life You’ve given me and live it to the fullest in You. In Jesus’ name, Amen.

My life changes what seems like daily. Living with chronic pain, dealing with a spinal cord injury which left me with deficits all the while still being a wife, a mother, and grandmother isn’t easy. Yet, I know that I am here for a reason. Each day I open my eyes I am thankful for another day I get to be with my family, enjoy everything around me to the best of my ability, and to have the opportunity to keep moving forward. Even on the days I feel like I am going backwards, I know that God is still with me working on me, refining me.