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 visits that have no expectation of “entertaining” the guest are best.
Conversations
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:
1. I remember when..
2. Thank you for...
3. I'm proud of..
Questions to ask your healthcare professional (Doctor, Home Health Nurse, Hospice Nurse)
1. Are there changes in nutrition needs I should watch for?
2. Are there changes in breathing I should watch for?
3. When should I call you?
4. There are family members who donate want to be in the room or visit at all. Is that OK? Should I convince them to come?
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.
Common Symptoms
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.
PYREXIA (FEVER)
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.
Management includes:
Seeing 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
Some patients may find swallowing difficult. Your medical care provider can help in suggestions about changing the manner with which food is prepared. 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.
INCONTINENCE
This is a universal problem and can cause agitation, restlessness and distress.
Management includes:
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)