What is Hospice and What Can I do to Support the Care of my Dying Loved One?

I have worked with hospice patients for many years. I have worked with some really compassionate care givers and some that should  seriously change jobs. 

There seems to be a lot of confusion about the work hospice, even amongst healthcare workers. Many people think that Hospice is the name of an organization. That is not correct. Other people think that is it the name of a benefit given by the government and that is a  little closer to the truth, but also not correct.

Hospice is a philosophy of care that believes is comfort care of the dying.

Whether or not someone gets hospice care depends on a variety of factors. One of the terms that you will hear, if your loved one is receiving hospice care is palliative care.

Palliative care is the type of care that the hospice philosophy is based on. This is ensuring the dignity, comfort and pain management of a dying person.

Most insurance, including medicare covers hospice care if you qualify.

This is all tied up in a bureaucratic mess and sometimes it works and sometimes it fails. I have seen people qualify for hospice care and then “live too long: past the expected time. Then their benefits were pulled and they no longer had hospice care.

Sometimes they re-qualify after a waiting period, and the doctor gives a new diagnosis and submits it ti hospice. I believe that the family has to go through the entire application process again.

Sadly I have seen people die without hospice care, even though they had it a month ago, because the paperwork did not go through in time to re-qualify them.

So, that is the aggravating part to me. There seems to be no rhyme or reason to some of the particular cases I have seen, I have noticed, however, that people with private insurance get treated better than people on medicaid. Surprise , surprise!

The idea of hospice care to keep the patient as comfortable as possible in every way.

Each patient that is approved for hospice will get certain supplies provided to them including but not limited to, a special bed with an air mattress that is designed to prevent pressure ulcers, an oxygen concentrator, a wheelchair, and basic cleaning and hygiene supplies.

Each case is assigned a hospice nurse to supervise the care.

The nurse will visit the patient intermittently and if the family requests her to. The nurse will supervise the nursing assistants who are the direct hands-on care for the patient.

Medications are prescribed by the doctor and overseen by the hospice nurse. If the patient is in a facility then the charge nurse is given directions by hospice on the medications to be given.

The usual medications available to a hospice patient are Roxanol, Morphine and Atropine.

Roxanol is given for anxiety and calming. All patients do not need this but the family can request it. Morphine is used for pain and most patients are given this as they get near the stage of active death and during active death. The family can request or deny the morphine, but usually it is standard.

Many patients develop a death rattle near the last few days prior to death.

The death rattle is caused by extra secretions of fluids and it sounds like they have fluid in their lungs and throat. This sound is often very disconcerting if you have never heard it before. I may make you feel like the patient is suffering or drowning.

But the death rattle does not hurt the patient or cause them nearly as much discomfort as it will sound like to you. The atropine does usually work to reduce the secretions and make the death rattle less disturbing to the family.

Each hospice patient is assigned nurse aides. How often they come depends again on your insurance, if the patient is home or in a facility, and also how close to death they are. Usually there is a nurse aid around the clock for patients that are in the last stage called active death.

Active death usually lasts for 3 days to a week, By this time the patient has stopped eating and has greatly reduced or stopped fluids. They are usually placed on oxygen for their comfort.

The nurse aid should be tending to changing their diaper and also turning them in the bed to a different position, every two hours. 

The turning and repositioning of a person that is bed ridden is very critical.

Pressure sores, also known as bedsores or pressure ulcers can develop in a matter of less than two hours of any pressure being on the same spot of skin.

The pressure sores usually occur on the bony parts of the body, where the most pressure is causes. Places like the backs of the heals, the elbows, and the bony areas of the spine are the most common areas for sores to happen.

Pressure sores can get very severe and their are 4 stages to them. They should be prevented but if they occur then they should be tended to in order for them not to turn into stage 2 or stage 3 ulcers.

Here is a link about pressure sores and the four stages. 

This is a link to more information about causes and treatment of pressure sores.

If left unattended, pressure sores will become so deep that the bone is exposed. As you can imagine this is extremely painful to person who is lying on the sore.

Once a pressure sore begins then the nurse to evaluate it, after an aide usually reports seeing it. The patient will be re-positioned more often and in the way that is directed by the nurse.

If a sore appears on the back of the heal, then the heals will be elevated on a pillow, but good aides know that it is best to do this before any sores happen. The pillow should be placed under the lower legs, leaving the heals in a “free floating” position in the air, and not touching anything.

If the sore is on the spine, then there are special ways that the hospice aide is trained to use pillows to position the person so that they are never lying directly on the sore.

Someone with a bed sore should NEVER be laid in a position that the sore is touching the bed, unless they are being changed or rolled into a new position.

There are also topical creams, patches and antiseptics that can be used to treat the area, depending on the directions given by the nurse, or a wound care specialist.

These are some of the aspects of care that are part of hospice. There are other things that are usually done in order to care for the whole person, including their emotional and mental aspects. There are also more things involved in the physical care, but I think I have given you a good basic idea here.

I will write a second post about hospice care and explain about other aspects of hospice care. The best thing you can do as a family member, about their physical care is to learn about hospice care to make sure that your loved one is receiving the proper care.

If they are in a facility like a nursing home, the more vigilant you are, the better care your loved one will receive.

This may be sad, but I can tell you that it is true, from years of working in nursing homes. I have been instructed before to spend more time on a certain patient because the family is expected to visit. 

Being the person that I am, I always gave equal care to all of my patients, but the directors and charge nurses are more concerned with the how the patient’s care looks to the families that are visiting the most, or the most likely to visit that day. People who had someone visiting them every day, always received the best care and the most attention.

If you cannot visit, then phone calls can also help. You can also send a friend who lives in the area to stop by. As long as the facility knows that someone is keeping an eye on them, then your loved one will be more likely to be cared for on a proper schedule at a nursing home.

Once there is an around the clock aide, when your loved one is near or in active death, then someone will be there to care for them all the time. 

This is a difficult journey for you, if you have a loved one who is dying. Hospice also usually offers help for you in dealing with the grieving process. If you need help, please ask them what services are available to you. 

Complicated Grief after a Death of a Loved One or Severe Relationship Abuse

Complicated grief can occur after the death of a loved one, after the suicide of a loved one, and also after a narcissist discards you. 

Complicated grief is like being in an ongoing, heightened state of mourning that keeps you from healing.  Mayo Clinic

The Mayo Clinic Lists the signs and symptoms of complicated grief as follows

• Intense sorrow and pain at the thought of your loved one
• Focus on little else but your loved one’s death
• Extreme focus on reminders of the loved one or excessive avoidance of reminders
• Intense and persistent longing or pining for the deceased
• Problems accepting the death
• Numbness or detachment
• Bitterness about your loss
• Feeling that life holds no meaning or purpose
• Irritability or agitation
• Lack of trust in others
• Inability to enjoy life or think back on positive experiences with your loved one

The problems of complicated grief are severe.

People lose touch with their friends and tend to isolate themselves. It is a mammalian response to want to go crawl into your cave and hide. You want to get away from any triggers and have no desire to be around other people.

It can result in losing one’s job and friends. If it continues, complicated grief can lead to very severe depression and suicidal thoughts.

There are factors which can cause a person to be unable to accept the death of a loved one. The death may have been senseless or violent. The death may have been of a young child or teenager. 

This can be a result of miscarriage or still birth. Any death of one’s child can cause mental trauma.

Some people can experience Complicated Grief after the death of a spouse, especially if they are now left to care for a child with no other parent.

The child’s grief only serves to compound the grief of the parent. They have to carry their own grief and the grief of their child for the lost parent. The more the surviving parent claims, internalizes and feels responsible for the suffering of their child, the more likely it will result in Complicated Grief that they cannot seem to recover from.

The child is a constant reminder of the lost partner. The child is grieving the lost parent. This can easily overcome the strongest of people, who are struggling to keep their child and themselves together, in the midst of their own grief.

There is seldom time for them to deal with their own feelings, because they are dealing with their child’s trauma over the death. This repression of feelings, in order to keep going, can cause the grief to not be resolved. The parent needs to get help with their own feelings.

Sometimes people do not understand why their loved one is still in the same state of grief that they were in months ago.

When they comment that the person should be better by now, it makes the person draw into themselves more, which is the opposite of what needs to happen.

There are any number of circumstances in combination with the person’s mental state at the time of the death, that can lead to ongoing grief that does not heal normally.

This is a very serious mental health disorder. It may need to be treated by a mental health professional. Telling a person to “get over it” or making them feel bad for continuing to feel grief, will only cause the person to further isolate themselves.

Complicated grief can also occur after the victim of narcissistic abuse is cruelly discarded. Their reality has been corrupted intentionally by a psychopath or a narcissist. When the abuser discards you, the world that you know completely falls apart.

There is a chemical addiction that the victims of narcissistic abuse suffer from and there are actual physical and mental withdrawal symptoms. There is also a sudden, rude awakening of the reality as they knew it, being shattered.

The realization that you were with someone in an intimate way, that was very dangerous, can be frightening and cause you to question humanity itself.

So, victims of narcissistic abandonment can go through a similar but different experience of Complicated Grief. As I said, it is a severe mental condition and can cause the victim to contemplate suicide.

Not all people that suffer from complicated grief will become suicidal but it does not make their condition less important to get help with. There is a lack of being able to accept the reality of what happened. Every day the person wakes up and re-experiences the death all over again.

Every day is the same trauma replaying itself.

People cannot go one with this level of severe grief and still live and function normally. It can cause destruction to their mental health and to their functionality in life.

If you are or have experienced the symptoms on the list above, you should reach out for proper help. Do not let people tell you that you “should” just get over it. You cannot get over this condition all alone.

It is not a choice that someone makes to stay have Complicated Grief or PTSD.

It is a state that your brain goes into. Your brain is always trying to protect you, but sometimes it does the wrong thing in the process.

The brain is causing the amygdala to work overtime. You become in a state of post traumatic stress. The brain decides to put the fear centers and the pain centers of the brain, into alarm mode. It is trying to defend you against more trauma.

The problem is that you cannot live and function if your brain is keeping the alarms on all the time. We were not designed to tolerate stress and anxiety in an ongoing, continuous manner. 

The fight or flight mode is a chemical reaction in the brain, that wakes up the amygdala and the frontal cortex. It is supposed to get your body ready to fight or to run. It is like that super adrenaline rush you get when someone does something on the road that is about to cause you to crash. 

It is like if someone were to hold a gun up to your head. It is like any kind of severe life threatening situation occurs. One example might be if you saw your baby in severe danger. Your entire body would feel that. Your blood pressure would rise, your heart rate would increase  etc.

PTSD and Complicated grief are similar in that the alarms are in a permanent ON position.

Someone traumatized from narcissistic abuse may have both of these condition –  PTSD and complicated grief. The grief causing the severe sadness and lack of acceptance. The alarms are on that have to do with not wanting to accept the trauma that you have to experience about the death.

People who have lost a loved one and were not prepared for it, can end up with complicated grief. If the death was violent, or there were circumstances that the person’s brain just cannot accept, then they may also have PTSD.

The conditions of  PTSD and Complicated Grief can exists as comorbid conditions in the same person’s brain. 

What the exact thing that is going on the brain is not as important as the fact that the person is in a severe mental disturbance. It is not sustainable for them and they cannot live normally with this ongoing critical mental disfunction.

God bless and protect those that suffer,

Please reach out for yourself and catch the hand of others who are sinking,

Much Love,

Annie