Tag Archive | love

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.

Love each other…

Love each other with genuine affection and take delight in honoring each other. Romans 12:10 (NLT)

 

Love and honor each other. So simple, yet it often appears that people cannot understand nor follow this. All you have to do is open up the newspaper or turn on the news to see how people treat each one another. During these trying times it would benefit us to take the time to respect and show compassion to one another. So often people are so caught up in their own point of view that they cannot and do not take the time to consider the other side. 

Recently, I personally have experienced nasty comments and bad behavior instead of love and understanding because I defended the “continue to wear face masks” view. Instead of taking the time to understand why I supported the “ continue to wear face masks” point of view, people told me: “butt out”, “ there’s no real risks because the media is lying”, “your stupid for listening to hype,”  “continue to follow the herd” and many other negative comments. Not once was I asked why I believed that wearing face masks was important instead it was negative comment after negative comment. Even when it was explained the response was, “then stay home” and other unpleasant words.  Why must I be forced to stay home and not enjoy the occasional outing with my family?

It would benefit all of us to love and honor each other regardless of our opinions. There is no reason to be hateful and disrespectful to one another. We all have our own agenda, but there is no reason we cannot take the time to understand the why and maybe learn something new. Taking the time to listen and respond with understanding even if our opinions differ can change the mood. After all, we were all given free will so why not choose to love and honor each other regardless of our opinions? Showing others affection and honoring them does not take a lot of effort, but it can change the way we interact and may even turn a negative situation into a mutually beneficial one.

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.

 

Things I sometime think about…

Becoming disabled at the age of 52 was not what I had planned for my life. I am supposed to be enjoying life with my husband, traveling, having fun with my children and grandchildren not wondering how much pain I going to be in or how many spasms am I going to have to endure. Now I am learning to live with pain at 5+ on the pain scale on most days as well as having to take way more medications than any normal person and having to use assistive devices. Yes, these things make life more difficult, but learning to navigate in public places as well as with the public is even more difficult.

Just going to any local grocery store, pharmacy, or restaurant possess challenges that beg the questions like: why must they all have industrial mats at the entry year around? or Why are the handicap bathroom stalls are at the back of the bathroom? Should they not be at the first stall where people with disabilities can get them  fast and easier? or Why do most places make the doors to enter the bathroom so heavy that even a person with no disability has difficulty opening ?

Every time I enter a building, I must be aware as there is often a major trip hazard called rugs/mats. This is especially true when you are using a walker because as you “glide over them” they catch the wheels and lift causing a major trip hazard. When the mat lift you then have to stop, lift up your walker so you can dislodge the mat stuck under the back wheels or skid plate, and then set it back down before walking on. Well, if you are using a walker chances are you are already unstable like me. Now, I must try to stand balanced while lift and setting down my walker. Does not sound very safe to me.

Next, why is it that in most places the handicapped restroom is the very last stall, there is usually only one stall, and just entering the restroom is a chore? Most people living with a deficit already have difficulty so making the door to enter so heavy that even someone who is healthy and strong can barely open it is just uncalled for. Living with a SCI and Chiari Malformation does not just cause added pain but also creates bowl and bladder issues. Often when the urge hits you must go right now. So, struggling to open the door, only to find out you have walk even further then abled body people and then there is only one stall which is now occupied by an able body person.  Women tend to use these stalls when they have small children-So why not use the family restrooms instead? Granted in some locations they put the changing table for babies in the only stall available for handicap which complicates matters some (not sure if this is true in the men’s restroom).  It seems strange to people when you have a grown adult doing the pee-pee dance because you are doing everything you can to not have an accident. It is a bit embarrassing to be an adult that has bathroom accidents, but it happens.

Having illnesses like Chiari, MS, SCI and many others means dealing with not only the everyday pain and discomfort it also means learning to deal with bowl and bladder problems. There are days where everything works like it is supposed to and then in the blink of an eye you are dealing with urgency and inability to control your bowel and/or bladder. It is already difficult having to deal with chronic pain and instability but then we also must navigate in a world that is not made for people with disabilities. So, when you are out, I would ask others to be a bit more considerate, avoid using the only handicapped bathroom if possible, and pay attention to your surroundings. You can help those of us with a deficit by being proactive and watching for hazards and bring them to managements awareness just like I do. Even with the obstacles, I still am grateful for every day I have, and I feel truly blessed. I will keep moving forward and do my best to tell a better story as I know that God has a plan for me.

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Thankful

Every breath and step I take, and every hurdle I conquer is because of Him. Facing each day with Him means nothing is too big to overcome because even when I think I am failing He is picking up and carrying me to the finish line.