Caring for a loved one with CJD


Caring for a loved one who is dying is one of the most emotionally challenging experiences that a person will endure no matter what the illness.  A plethora of emotions overtake you and may include:

Anger — anger with our loved one; anger with God or a higher power; anger with ourselves; anger at the world in general.
Disbelief — ‘this can’t be happening’.
Guilt — ‘if I give in to this reality of ‘death’ I am giving up’.
Fear — fear of the unknown; fear of death; fear of life without our loved one.
Peace — knowing your loved one will no longer suffer; knowing they will be with God or a higher power.
Spirituality — you may experience a connection to God or a higher power that you may have never felt before.

What ever emotions you experience during this period of time, realize the dying person is experiencing the same emotions.  It is important to separate our emotions and our emotional needs from those of our dying loved one.  This is not to say you should ignore your feelings and emotions but rather separate yours from your loved ones.  This will allow you to care for your loved one wholistically, allowing them to live peacefully, comfortably, and with dignity until the moment of their death.  In doing so, you may find that the emotional feelings and needs of yourself and your loved one are being addressed.

One of the reasons dying is so hard is that what is inevitable and universal nevertheless feels unnatural.  Families and their doctors have an irresistible impulse to prolong life, to turn their faces away from death.  And that can make dying harder still.  At some point there is a shift in care from prolonging life to that of maximizing the individual’s comfort.  You become an essential component in making that shift in care successful.

Family Needs  
Obtaining a diagnosis is vital in allowing the patient, as well as the family, to accept the reality of impending death.  Diagnosing CJD can be time consuming and difficult.  It is important to understand that in some cases diagnosis may not be made until after death.

The family also needs consistent and accurate information.  Families must be persistent and vocal with their physician and ask questions.  Utilizing the Internet, the hospital library, or your local library are other sources to obtaining information.  It is important to provide this information to your physician so that an accurate interpretation of the information can be made.

Our hope is that the information contained in this web site regarding CJD will help families, as well as physicians, understand the CJD disease process.

Obtaining a diagnosis and accurate information allows the family to bring closure to the reality of death and enables them to spend quality time with their loved one during their last days.  Spending those last days as a mother, a father, a wife, a husband, a son, a daughter, and a friend.

Care Options  
There are many options available regarding the care setting for your loved one.  This decision may depend on the condition of your loved one, insurance coverage, and your personal desires and abilities.  Determining the care setting for your loved one is a very personal decision and there is no right or wrong answer.  As I mentioned earlier, this is one of the most emotionally challenging experiences you will ever encounter.  No one really knows what he or she would do until the situation presents itself.  You know yourself better than anyone and whatever decision you make, know that it is the right decision for you and your loved one.  The following is a list of care setting options:·         

  • Home
  • Home with Hospice
  • Hospital Occupational Considerations
  • Nursing Home 

Care needs  
No matter what care setting your loved one is in, there are certain care needs that should be addressed.  Today there is no treatment or cure for CJD so the most we can offer our loved one is comfort.  Comfort is not to be minimized, it is still very important to provide quality, comfortable care.  Remember, if one person is to receive comfort, someone else has to give it.

Safety — As walking becomes unstable, coupled with dementia, safety does need to be addressed.  A walker and/or wheelchair may be necessary if your loved one is extremely unstable while walking.  Loved ones may forget they are sick or have hallucinations and try to get out of bed and walk.  If your loved one is bed ridden, consider side rails.  A hospital bed may even be necessary if you are keeping your loved one at home.  It is also important at this point to not leave your loved one alone.  Soft restraints are also an option if necessary.

Skin Care — Towards the end of illness, your loved one may be unable to walk and limited to sitting in a chair or complete bed rest.  It is important to provide skin care in order to prevent skin breakdown, which may result in ulcerated bedsores.  Providing good skin care can also increase comfort. 

Proper skin care includes frequent turning (at least every two hours), keeping the skin clean and dry, and light massaging of the skin to promote blood flow.  Places to watch for bedsores are the base of the spine (tailbone), heels, hips, and other places where bones are close to the skin.  Placement of pillows between a patient’s legs can also prevent skin to skin pressure on the knees, ankles, etc. and promote comfort.

In addition, there is special equipment that can be used on the bed to help relieve pressure on the areas prone to skin breakdown and promote blood flow.  Check with your physician or care provider for more information and available resources.

Mouth Care — When someone is debilitated, frequent mouthwashes are important.  Their mouth may drop open and become dry.  Water should be given in frequent small quantities if they can swallow.  Your loved one should be on their side so that fluid doesn’t trickle down their windpipe, making them cough and/or aspirate the fluid into their lungs.  Brushing the teeth and tongue with a soft-bristled brush and a small amount of mild toothpaste and rinsing is helpful.  If your loved one is unable to have their teeth brushed, swabbing the mouth with glycerin swabs helps keep the mouth from drying out and provides comfort.

Nutritional Supplements — If eating and swallowing become difficult for your loved one, nutritional supplements or feeding tubes can be provided to ensure a balanced intake of vitamins and fluids.  For those who have difficulty swallowing, thickening agents can be utilized in drinks to prevent aspiration of fluids into the lungs.  Check with your physician, care provider, or you local hospital dietary services department for appropriate supplements and thickening agents that are available.  It is important to remember that individuals should not be pressured into eating more than they can tolerate.  Dehydration can actually have a palliative effect by decreasing anxiety and pain.

Medications — As was mentioned earlier, there is no treatment at this time for CJD.  Medications can be given on a trial and error basis however; there has been no evidence of effectiveness.  Sleeping pills may help your loved one if they are having difficulty sleeping at night.  Sedatives may be needed if your loved one becomes aggressive or has violent hallucinations.  Morphine can be used if breathing becomes extremely labored near the end of life.  Morphine in small dose opens the airway making breathing easier for your loved one.  Again, please check with your physician and/or care provider to obtain the right coarse of therapy for your loved one.

Profuse Sweating — Those who are close to death may perspire profusely.  Frequent sponge baths and changing the bedding is needed during this time.

Labored Breathing — Those who experience difficulty breathing may find relief by being turned slightly on their side with their head propped up on pillows.  Sometimes opening a window may also help.  Oxygen may also be provided to help your loved one breathe easier.  As mentioned previously, morphine in small dose opens the airways making breathing easier for your loved one.  Check with your physician and/or care provider to obtain more information regarding use of morphine for labored breathing.

Other Comfort Measures — Other means of comfort include a quiet, calm room, music, or reading to your loved one.  Always speak to your loved one in their presence, not about them.  Careless conversations over an unconscious person are sometimes clearly heard by that person.  Hearing is thought to be the last of the senses to fade. 

Universal Precautions — When caring for someone with CJD or any disease, it is important to use precautions.  Wash your hands frequently; use gloves when handling urine or feces etc.

There are many more things you can do for a dying loved one, both physically and spiritually, to help them live comfortably and with dignity until the moment of death.  It is essential for you to believe that whatever you do in loving service for your sick and dying loved one, you are contributing to their comfort and happiness.  You are not helpless in the face of illness and death, regardless of how much or how little you are able to do.  What counts is your presence, not your activity.  It is more important for you to be a mother, a father, a husband, a wife, a son, a daughter, a sibling, and a friend than for you to be the primary caregiver.  Don’t hesitate to seek or accept assistance in providing care and emotional support to your loved one.  It is equally important for the family to have time away from the situation, obtain rest, and take care of themselves.  Remember to touch your loved one, hold their hand, and reassure them.  Whatever we do outwardly, it is our concern and respect for our suffering loved one that matters.

Refer also to Occupational Considerations for additional caregiver considerations.

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