Friend of Brain Support Network and local caregiver Laurie recently lost her husband. (He was initially diagnosed with multiple system atrophy but the diagnosis changed to Parkinson’s disease after he lived for so long.) She wrote some “final reflections on caregiving,” that we are sharing with permission. All caregivers, regardless of the disorder they are coping with or whether they are spouses or adult children, will find something worthwhile here.
Final Reflections on Caregiving
You don’t know how long you will be doing this; do everything you can to make your life with your partner enjoyable in the here and now. When you look back on this time, you want to be able to say, “I didn’t lose the time. I made the time as good as it could be so we still had a life.”
Simplify your life. As a caregiver, your “to do” list is long. Try to prioritize the one or two things a day to accomplish and try to fit in some kind of enjoyment for yourself.
Medication is important, but it is only a small piece.
Do as much as you can do while you still can. Yes, sometimes it takes a lot of work, but it is worth it! Do not put off activities just because they are hard to accomplish. Someday your partner will not be able to do them, so do them now!
Find humor in even the worst scenarios. This is really important. There is no such thing as inappropriate laughter, as long as you are with someone who understands your humor. Find that person!
Minimize exposure or get rid of people in your life who are not helpers. They will take you down and you need all the help you can get.
Keep socializing. Sometimes we think our partners will not enjoy getting out and being around other people. If you avoid exposure to the outside world it will create anxiety. Remember, even when a person is not verbal or does not seem to be responding, they can still listen and observe. You don’t want to isolate your partner, and you want others to feel comfortable around them because they see them often and are not shocked by their appearance or affect.
Develop a routine for yourself that will anchor you in the future. There might/will come a time when that routine will get you through your worst days. Try not to be a “floater” (a person who is wandering with no direction) during hard times.
Find health care workers who will listen to you and respect your insight. You know your partner better than anyone else. Your intuition is important, so make every effort to have your health care team understand your partner better so they can give the best quality of life.
Protect your time. Learn to say “NO”! This is harder than it seems, but you need to do it. If you do it enough, people will stop bothering you about time-sucking activities. Try not to do or agree to something that you know will drain you or not be enjoyable, unless it is really something you have to do.
Get creative. Figure out a way; often there is one.
No one wants other people in their homes, but you will find it to be comforting once you take the leap. Caregivers can help you as much as they help your partner. If you can afford it, do it sooner rather than later, so your partner can form a trusting bond.
There will be times when you lose it, when you think you can not do another day, when you are not kind, when you think it would be so much easier if your partner wasn’t there–don’t beat yourself up about it; it will pass, and you will go back to being the loving person you usually are. Remember, even if your partner were completely well, you would have those thoughts occasionally anyway!!
And most of all–keep your center. Do not lose yourself in this, even though it takes so much out of you. Protect your core so you can give your best to another.