Toby, you have been very fortunate in having a consistent caregiver for so long. I was a caregiver for my mother for six years after she had a major stroke, and before I broke my neck. I am still a caregiver (although it is not a physical caregiving situation, but a supervisory directional caregiving instead), and it is difficult not to get burned out by the sameness and sometimes very frustrating feeling of helplessness that as a caregiver we can’t “fix” the problem.
My family and I were counting up the number of caregivers that I have had in the last 22 years, and except for my youngest daughter who has on and off again been my caregiver it is close to 50! This includes some out of the caregivers who came and trained for a week or two and then we decided it was not going to work, and several who were with me for multiple years. The one thing I have learned over these years is that for me it is best to have at least three caregivers that I can count on to help out when life changes as it always does. My youngest daughter is again my main caregiver and works with me four days a week. I have another caregiver who comes four evenings a week and another who come in three days a week, returning in the evening for those three days. I have tried to keep in touch with my caregivers who have moved on as I have found that there are times when I run through all of the options available to me and need somebody for a day or two. I have been very lucky that I have a couple of ex caregivers who are willing to jump in and help if it is possible with their schedule. I find that I do much better and that I am more appreciative of each of their strengths when I do not depend upon one person. The only thing that we can count on in life is that there will always be change, and many times I have resisted the change only to find out that it was the best thing that could happen to me at that time of my life. It still is very scary to me to start to train a new caregiver, as I am a middle of the night “worst scenario possible nightmare type of person” and have to push myself to look for the positive and any new situation. My answer for myself is to keep busy and try very hard not to focus on the negative and try to remember that each of my top five caregivers of all time LOL were also completely new and green to my needs at one time. I’m trying to keep active outside of my family life so that I have unusual and different things to talk about with my family and attendants. I am still pushing myself to do things independently as much as possible, and have learned that most people in the community are very happy to help get something down from the shelves in the store, clerks are usually happy to put the things up on the scanner and cetera. I just have to swallow my pride and ask for help. The places that I go to on a regular basis are quite used to my needs and often ask if I need help long before I do. For instance, if I am at Home Depot I go around the store and look for the items that I want, and then go ask for help to put them in the cart and help me check out. If I have taken public transportation (we have a fabulous para transit system here in Reno) they will usually put my purchases aside until somebody can come pick them up. Just this little bit of independence really bolsters my self esteem and confidence level for the day. Sorry to go on and on, but yes there is plenty of life for even high quads like ourselves, but we have to look for it and find out what makes us the happiest. Or at least more content with what we have done that day which is never anything like what we were able to do before our injuries, or illnesses made such a dramatic change in our lives. Look for what makes you happy, and then go for it to the best of your ability. Good luck at this difficult time in your life. Joan
