Tag Archive | Spianl Cord Injury

Even baby steps move us forward

Each day we open our eyes is another opportunity to keep moving forward. Even the smallest of steps is a step forward. When dealing with chronic illness some days feel like you take one step forward and 5 steps back. Between dealing with the pain, the medications, and daily life it can be overwhelming.

Yet, the smallest of steps is still moving in the right direction. Just sitting up for a few minutes at a time is a start. Remembering to allow ourselves to have down time is important. Just because one day is bad doesn’t mean all days will be bad. I know from my own experience that sometimes I may only one day where my pain is at a 6 to an 8 most of the day, while at other times it is 4 to7 days in a row. Making it difficult to see end through it all. During these times I pray a lot and make sure I allow myself time to recover. Focusing on every little positive step allows me to remember that any movement is movement forward. It is important to flood our brains with the positives instead of negatives because as humans we tend to focus on the negative.

Life can be full of negative moments, but there are many more positive ones. So, if we focus on those we will find ourselves more able to deal with our issues allowing us to keep moving forward and overcome so much more. Every day we have the choice to allow the negative moments to take over or to focus on the blessings we are given every day.

I will continue to believe

It is easy to lose hope and find all the things I still cannot do. Waking up every day in pain doesn’t help. Almost two years ago I had a very dear friend and pastor lay hands on me. He told me that my legs were already being healed and to believe. So, although it is easy to fall into the negativity trap I have continued to believe and have hope.

A few days ago, my husband and I went on a walk while staying at the beach and using my LifeGlider. I have really missed being able to do things like jumping, dancing, and running. I decided to try running. Now this is more like a super-fast walk, but I can say I am on my way. I still have a way to go, but God has brought me from no feeling from the waist down and the inability to walk to regaining some feeling and standing to walking and now almost running.

Although it is difficult to sometimes see the progress and healing, there are times when God allows us to see and feel it. Never give up hope. Have faith because answers our prayers on His time. I refuse to give up and will do my best to keep moving forward telling a better story.

Working to run again. It will happen with pratice and believing in what God has done.

Overcoming the bridge

Defeating the bridge! Three weeks ago when staying here I could not walk over the bridge without my husband helping me. With practice, lots of prayer, walking and exercise I have built strength and now I can get over the bridge on my own using my LifeGlider.

It is better to give than receive

Acts 20:35 35In everything I did, I showed you that by this kind of hard work we must help the weak, remembering the words the LORD Jesus himself said: ‘It is more blessed to give than to receive.’ “

We all the opportunity to give to others each day and often several times a day. It could be as simple as a smile, opening a door for someone, allowing someone to go in front of you in the checkout line, or even a phone call. There are so ways to give. Yet, many of us get so caught up in own lives we do not even think about giving. Many years ago, I attended a life changing weekend where the motto, “Givers gain and takers loose,” was the theme. We learned the simple act of a hug could change our perspective when we learn to give as well as receive.

During these times where so many people have been impacted monetarily, emotionally, and physically giving is crucial. It may change a depressed, overwhelmed, or angry persons demeanor and outlook. One act of giving can turn a bad day into a great day, it means making people happier and more productive. It also often causes the giver to have more joy as well.

The opposite is true of takers. They are often selfish and draining on their relationship with others. They are the ones that always want things their way. They tend to go from zero to angry in seconds. They sometimes throw tantrums even as adults.  They often give begrudgingly, expect something in return, or because they are wanting to appear like the they are givers. They are only happy when things are going their way, or they are doing what they want to do. But as soon as they are told “No” or are alone their happiness fades and they become lonely, sad and depression and anger creep in. Takers also always blame others for things. It is never their fault no matter what. The often cannot say, “I am sorry.”

Though this may be true of takers, the opposite is true of givers. By watching others smile when they receive the giver reaps the benefits of a happy heart making them more joyful and productive. Have you ever started out having a bad day only to have it change because someone did something unexpected which changed your perspective? When we give to others without expecting something return, both parties gain. Just taking 5 minutes out of your day can change someone else’s outlook as well as your own.  We can all live better more blessed lives when we give freely to each other

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.