Q: I take care of my husband who has dementia. Our adult children are always trying to hire help for me or give me their opinions. How can I tell them nicely that I do not want their help?
A: It must feel difficult to hear your children offer opinions on your role as caregiver. When others offer their suggestions or advice it can easily be experienced as a criticism. Remind yourself that your children are coming from a place of love and caring for both you and your husband.
It is important to have a conversation with your children and help them understand your view, as well as to set your boundaries. However, first take a moment to think about what they are offering and why.
When caregivers experience burnout, it is very common for other people to notice changes in them before they see it in themselves. There is value to listening to others who care about you. Perhaps your children are worried about your health and see that you may be tired, short tempered or sad. If any of these things are true, then consider accepting some of the help your children are offering.
Have an open and honest conversation with your children about your view on your husband’s needs, your abilities as his caregiver, and the areas where you may need support. They probably want to be involved in their father’s care, and are offering what they think is best. You get to set your boundaries and be clear with them about what their role is.
It may help to give your children a more defined role of how you want them to help and be involved in a way that will work for you. That may mean asking them to pick a set day of the week to take your husband out to lunch and give you a break. Or perhaps it would help to ask them to oversee getting the prescriptions refilled. Think about what they can take off your plate that you feel comfortable with and that will truly reduce your stress.
It is normal to have some family conflict in situations involving caregiving. Your children may be struggling with the changes they see in their father. Dementia can be very difficult for family members to understand, and there are often many emotions as you each deal with a changing relationship with your loved one and each other.
If you think your children need support and education on dementia you may suggest they find a caregiver support group. There are support groups specifically for adult children caring for parents. You can find local support groups for caregivers of people with dementia at https://www.alz.org/help-support/community/support-groups You may find one that would benefit you as well.
Caregiving for someone with dementia can be like a marathon. You have to prepare yourself for the road ahead with the energy, support, and resources you will need. The journey will have many ups and downs. There will be times when you will need to lean on your children and let them help. Ultimately, open communication will be key to managing changing family dynamics. Recognize that while everyone may not have the same ideas for what is best in each situation, everyone shares the same ultimate goals of providing the best care possible for your husband.
Martha Shapiro can be reached at Senior Concerns at 805-497-0189 or by email at mshapiro@seniorconcerns.org.
