The caregivers that are most successful are the ones that receive support and love from family members and friends. If at all possible, don’t try to run this campaign alone. You will only wear yourself out.
Communication will always be one of your best assets. Even if you have a brother, sister, uncle, aunt or a best friend that live miles away—talk to them. It’s important that they hear what is constantly going on, for your sake and the sake of your loved one.
Ask a family member or close trusted friend to keep a caregiving notebook. Have them write down anything they feel is important from the regular conversations you are having. These notes should also include your loved one’s date of birth, Social Security number, Medicare or Medicaid and insurance information, along with a list of physicians and medications.
You need someone that you can depend on to hold on to this crucial data in case something happens to you. The more support you have, even if it’s just a pat on the back, will make each day that much easier to get through.
You will probably be able to handle most everything during the beginning stages of the disease. But down the road, when you come to the latter stage, you’re going to need some assistance. The earlier you learn to accept this, the better. You will be pleasantly surprised, as I was, as your “family” expanded to include nurses, nurses’ aids and many others who were formerly strangers to you.
At one point my dad’s doctor tried to advise me to have him become a hospice patient. I was opposed to this idea and discarded it for an entire year before finally submitting. I believe the reason I most likely put this off was the mere fact that in my mind, I was relating the word hospice with death. I wasn’t ready to accept that we were actually nearing that point. Well, I was wrong, and if I had to do it again I would have had hospice helping me with my dad when the doctor first suggested it.
What I have learned is that hospice is about comfort, not dying. When I finally did have hospice involved with my dad, he lived almost six months to the date he was signed up. This is realistically what hospice is actually looking for, enrolling patients six months before passing. But I could have used some vital help way before that. I will say having hospice there was nothing short of a blessing. And yes, there were a few members on the staff that within that short period of time almost felt as if they were family.
One of the most essential parts of caregiving is developing a plan with people you can count on.
Don’t let this barbarous disease tear your family apart; if anything, it should bring your family closer together.
Remember that old saying, “When the going gets tough, the tough get going.” Well, if the family sticks together, everything will become easier and you’ll be able to enjoy the time you have left with your loved one.