- About Us
- About CJD
- 2013 CJD Foundation Family Conference
- Family Support
- CJD Foundation Family Research Grants
- Educational DVD
- News Articles
- Letter to Clinicians from Dr. Pierluigi Gambetti
- American Red Cross Lookback Study
- End of Life Issues
- Memory Quilt
SUGGESTIONS FOR PATIENT CARE
Always treat the patient with dignity and respect.
Reassess the patient daily (e.g. when to ask for Home Health Care Assistance)
- Activities of Daily Living: Does your loved one need more help than previously with bathing, shaving, toiletry, dressing, eating, etc.
- Nutrition: Let your loved one be in charge of their diet. Nutrition needs may alter as the disease progresses.
- Visitors: Pay attention to how your loved one responds to visitors. Are they welcomed? Are visits tiresome? Do they make your loved one more restless or agitated? Short, quiet visits that have no expectation of entertainment are best.
Always include the patient in conversations even if they don't or can't respond. They may very well be able to hear and understand but not be able to respond.
Reminisce: For example complete the following:
- I remember when..
- Thank you for...
- I'm proud of..
It is best not to force family members to visit who are uncomfortable around the patient.
Questions to ask your healthcare professional (Doctor, Home Health Nurse, Hospice Nurse)
- Are there changes in nutrition needs I should watch for?
- Are there changes in breathing I should watch for?
- When should I call you?
When talking with the physician always encourage honesty, including what he/she doesn't know.
Keep our phone number handy – 1-800-659-1991. Encourage anyone involved with the patient's care to call us (including healthcare providers and interested friends) with their questions. If we don't have the answers, we know how to get them. We can provide a binder, free of charge, with patient care guides and information as well as a free copy of our DVDs.
The following are a few common symptoms your loved one may experience. This is only a partial list. The symptoms vary from patient to patient.
Wide fluctuations in temperature may occur even in the absence of diagnosed infection. This may be due to the effects of the disease on the central nervous system.
- Contacting your medical care provider for a medication that may help with controlling of the fever
- Controlling the environment by using tepid sponging and fans to cool the room
DYSPHAGIA (DIFFICULTY IN SWALLOWING)
Some patients may find swallowing difficult. Your medical care provider can help with suggestions about changing the manner with which food is prepared or suggest different feeding utensils. Regular mouth care is often a very important comfort measure.
It can be helpful to remember that nutrition and hydration are often more important to the family than the patient. These needs alter as the disease progresses.
This is a universal problem and can cause agitation, restlessness and distress.
- Discussion with the daily medical care provider to assess ways to address incontinence
- Learning how to change the bedclothes with the least amount of touching
MYOCLONIC JERKING (TREMORS OR SEIZURES)
Myoclonic jerking may happen, but does not with all patients. This does not create pain for the patient but is most difficult for the family witnessing it.
Minimize touching, turning and a lot of movement around the patient
- Promote a calm quiet approach and create a quiet environment
- Tell the patient what you plan to do before you touch or move them
- Use of gentle massage may help
- Contact your medical care provider to assess if a medication might help
SENSORY DISTURBANCE (HYPERSENSITIVITY TO TOUCH AND ENVIRONMENTAL NOISE)
Heightened sensitivity is common. To what extent varies for unknown reasons. Reactions occur more commonly to unexpected touch, images on a TV screen, loud noises and loud music. This may produce immediate signs of distress and agitation.
Careful planning to reduce the need for touching
- Controlling environmental activity and noise
- Using soft lighting
- Explaining to visitors:
- How to approach
- How to talk to the patient
- What to expect in terms of conversation from the patient
- Cover glass tables and other pieces of furniture with a high gloss or mirrors as this may create a visual disturbance for the patient
- No TV if the patient reacts to changing light or moving images. These can induce hallucinations.