I was fortunate enough to care for my Nana (my mom's mom) and then almost 7 years later I took care of my father. Hospice can be a great help, you just need to know a few essential things.
- A schedule. This is necessary and will keep you sane and keep the patient sane as well.
- A co-caregiver. This way you are not doing everything completely by yourself. Although you have hospice they are usually not in the home with you at all times. Depending on how ill the patient is and what type of insurance the patient has it will also depend on how often someone comes to the home to assist with bathing, changing bedding's, and other minor things.
- Know the illness. Do as much research as possible. Find out what type of illness, the medications, the changes that will happen, and end of life. You will need the Internet, books and the doctors and the nurses. You will most likely need to stress to the medical team that you want to know everything now so you can know what to expect when things start happening and changing.
- A sense of humor. They say laughter is the best medicine. This will not only help you, the caregiver, but also the patient as well.
Here is some information that I hope you will find as helpful as I have.
http://www.webmd.com/ You can look up all sorts of different medications, illnesses and symptoms.
http://www.medicare.gov/ Depending on the age of the patient this will be handy.
http://www.medi-cal.ca.gov/ Sometimes it is necessary to have the patient apply for medi-cal, if they do not have a secondary insurance or do not have any assets.
http://www.hospicefoundation.org/ This is the main site for hospice information
A great book I read was, "Aging Parents, Aging Children: How to Stay Sane and Survive" by Miriam K. Aronson
I was fortunate in both cases to have the assistance of the doctors. In the first case they basically held me by the hand and walked me through it. The second time, although it was a different provider, I knew the basics and sort of what to expect.
Please be aware that no matter what illness or disease the patient has, it will change them into someone you don't know. I think this is the toughest part. Not only will their looks change, but so will their personality. Remember it is not them that is changing but it is the illness that is doing it, the meds that is doing it. They are still the same person you have known for so long, there are just some changes that are occurring that they have no control over. This is when they need your understanding, patience, love, caring and support more then ever.
There may be times when the patient can't speak or it may seem like they can't hear, but remember they most likely can. So always talk kindly and lovingly to them and around them, tell them things you want them to hear. You will remember these times.
This is still your loved one and remember the good times with a smile on your face and a happy tear in your eye.
You will see them again someday. . .