By Jennifer Crane, MS, CDP
In my work and in my personal life I have had the privilege to speak with people who are confronted by the reality of caregiving for a family member who is dealing with the debilitating symptoms of dementia. One concern that caregivers consistently communicate to me is that they are “screwing it all up!” They tell me they don’t feel up to the task. They express worry that they can’t be good enough or perfect when interacting with their loved ones. Some of these caregivers might even be at the point of exhaustion or breakdown.
Caregiving is not easy! No two cases of dementia are alike. The dementia process often requires a changing approach by the caregiver over time as the disease progresses.
There are several tips that I urge these individuals to bear in mind each day.
1. You are only human; be sure to take care of yourself.
None of us is superhuman. It is ok to be frustrated, overwhelmed, tired or even to lose your composure with your loved one. Caregiving is a 24/7 job and it is affected by so many outside things that are not controllable that it is inevitable that frustration and fatigue will take over sometimes.
It is ok to need a break, to periodically take time for yourself. In fact, it is not just ok, it is a necessary part of being able to be a caregiver for the long-haul. Take advantage of family members, friends, church members, or other people’s offer to do something to help. Ask them to come sit with your loved one, so you can take a nap, go to lunch with a friend or your spouse, or do a favorite activity.
If friends/family are not around, please consider looking into day programs or the local senior center for programs that provide respite. One program that I am aware of in the United States charges just $10 an hour and includes lunch so that a caregiver can schedule time off. Taking care of oneself refreshes and enables a caregiver to be much more able to take care of their loved one with dementia for the long haul.
2. When you lose your cool, apologize and move on.
Don’t beat yourself up when you lose it with your loved one. Again, you are human. Apologize and move on. Sometimes the loved one is hurt by your outburst. However, a conversation that includes an apology and an “I love you” can go a long way. Especially before dementia progresses into late stages, people are aware that their behavior and/or speech is confused. They don’t know what to do about it and it often helps defuse a frustrating situation to have a caregiver admit that they are confused or don’t know what to do or how to handle it either. The two can learn together.
3. Understand it’s a new normal.
When dealing with dementia, caregivers and family are always dealing with a “new normal” in the life of a loved one affected by this disease process. The disease process of dementia causes deterioration in the brain, is usually progressive in nature, and promotes periodic personality and functional changes in the affected loved one. These changes are hard for caregivers and family members to watch and understand. It is often the inclination of caregivers and family members to refer to the way the affected person “used to be” and to desire to get their loved one back to that normal. One of the hardest realities to face is that the former version of the affected person does not exist anymore. Who they are now and what they can do now is their new normal. It is important for caregivers and family members to understand this new normal and how it dictates their required care. As the dementia progresses, the affected loved one may experience additional new normals, causing the caregiver to need adapt the approach and strategy of care.
Conclusion:
Caregiving is not easy! No two cases of dementia are alike. The dementia process often requires a changing approach by the caregiver over time as the disease progresses. It is challenging enough for someone experienced with dementia to navigate the path to dementia care without any missteps. I advise caregivers not to be too hard on themselves, to get educated, and to seek regular guidance from their loved one’s healthcare practitioners.
If you have any questions, please contact Age With Dignity on our contact page at https://www.agedignity.com/contact.
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