If you are providing any type of care to someone who has dementia, chances are good that at some point you have experienced feelings of grief and guilt. These are feelings that often leave people feeling uncomfortable and ashamed. All they really mean is that you are human, and you are in the midst of a difficult journey.
When someone you love has dementia, there is an ongoing sense of loss that is invisible to the outside world. Although your family member may still look the same, they are not. They may no longer be conversant, they don’t recall many of your shared experiences; in fact some days they may not even know who you are. The life you may have expected to have with them is gone, and if you have help coming into your home, your sense of privacy has also faded. These are all significant losses, which create an unclear and ambiguous sense of grief. This is real grief and must be acknowledged and cared for. If the people around you don’t see this, explain it to them. Share your grief and tell them what would be helpful. Treat yourself delicately. Honor these losses, and find a healthy outlet to release your feelings: exercise, be creative, meditate, connect with others, or just take a break to be with your feelings. A good cry can provide some relief.
It’s been my experience that people who become caregivers tend to be truly selfless people who are devoted to providing the best care possible. Even so, they also tend to be very hard on themselves. Despite endless reserves of patience, if they experience a moment of annoyance with the daily repetitive questions from their person, it seems unforgivable.
Ambivalence walks hand in hand with caregiving. It is quite common to feel love and devotion while also feeling angry and resentful. Dementia in particular pushes caregivers to the edge of what they can tolerate – physically, emotionally and spiritually. This morass of emotion tends to leave people feeling guilty. To some degree, guilt is a matter of choice. It is much like a big bag of rocks that we carry around on our backs. It is tiring and discouraging. We have a choice to put the bag down. It isn’t easy, but it is worth the effort to let it go. If you are caring for someone with dementia, the greatest gift you can give yourself is to be extraordinarily compassionate with yourself. Be gentle, be non-judgmental. Allow yourself to feel whatever you feel, and then take care of yourself around it. Ask for support in whatever way you need it and share your feelings with a friend, a journal, a support group or a therapist. Struggling with your emotions while caregiving is not a sign of weakness; it is a sign that you are human. Be good to yourself.
Written by Kate Fallon, a licensed clinical professional counselor at Ageless Journeys. Kate also teaches the Savvy Caregiver program at Southern Maine Agency on Aging.
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Do not think that your dementia patient cannot possibly play on your emotions. This is especially true when you are taking care of a spouse or a parent. Comments like “just drop me off and you can go do what you really want to do without me weighing you down”. And then there’s my favorite, “I’m sure you would like some time alone without having to drag me everywhere with you. I realize what I burden I must be for you”. SO, who is going to say “you’re right” and go about their merry way?? Not me! The guilt gets in my brain and eventually make its way to my heart. How many things have they sacrificed in their lifetime to make it more enjoyable for you. Its definitely the circle of life … it so difficult to spend “my” golden years taking care of family without feeling some kind of resentment deep down inside. But you need to watch yourself because sometimes damage control is not enough. There ends up being a large explosion where all the suppressed feelings blurt out of your mouth and as much as their memory is damaged, they are able to retain some of knowledge that can cause scars. I am not a certified person my any means but I am a 65 year old woman was has a 71 year old husband with vascular dementia, two strokes, open heart surgery and a broken hip. Then there’s my 90 year old mother whose short memory span is about an hour and she is also completely deaf. She’s had a few strokes but her biggest high in life is being able to go to the local Indian Casino. At her age, there is no bigger treat than being able to play the slot machines. When you’re 90, what else is there? So we’ve tried coloring, paining, sewing, quilting,crocheting and many other hobbies with no long success. If there’s anything I’m missing, I certainly hope you will send your ideas my way no matter how silly you might think they sound. God bless each and every on of you who are on the same journey to provide love and comfort for your loved ones.