The Need to Support Caregivers

Question: I have a dear friend who is the caregiver of her mother who has dementia. My friend is angry and frustrated all the time. How can I help her?

People who are caregiving for a loved one with dementia go through great emotional and physical strain. It starts off very slight. At first their loved one just needs simple reminders to take medication or to shower, however, as the caregiver goes through greater dementia needs of their loved one, it becomes overwhelming. Family members are in a compromised situation when they take on the role of caregiving. Many caregivers already have physical issues themselves.

A caregiver will feel sadness, grief and emotional suffering as the needs of the person with dementia increase. Seeing the slow progressive loss of their mother, father or spouse is emotional and personal to the caregiver.

The caregiver struggles with having to perform a million different tasks, every day, for the one they are providing care to. They do this, and still try to balance their own life tasks, such as paying bills, going to their doctor appointments, cooking and shopping.

Though the caregiver is giving of his/her own time and is spread very thin, it is not always appreciated by the person they are caring for. The person with dementia will push back, act out and say hurtful things that they would not normally say. This is because of frustration, the feeling of helplessness and, lets face it, a brain that is no longer working as it should, due to the disease.

Caregivers often make promises in good faith, early on. They promised they would care for their loved one, and never place them in an assisted living community or nursing home. Promises they make are difficult to maintain, due to the level of care the person with dementia needs.

There does come a time when it might be necessary for the caregiver to relinquish their role to someone else, and step back into the role of a spouse or family member. This can cause a lot of guilt in the caregiver, and even though it is best for the person with dementia, the caregiver or ex-caregiver, still has guilt, for not being able to continue the care.

The caregiver goes through all the stages of loss. Grief, anger, depression, bargaining and finally acceptance. At first, when a loved one is diagnosed with dementia and they are exhibiting obvious signs of dementia, a caregiver might be in denial.

I hear phrases like, "Mom has always been anti-social," or, "Dad has never liked taking showers." As their loved one starts going through even more decline, they will say things like, "Mom has dementia, but she is not that bad." Even though the caregiver is under incredible stress, they want their picture to look bright and rosy to the outside world.

Diseases effect the brain, just like any organ of the body. The difference with dementia, is that the brain is not an organ that can be fixed. Medications can slow down the progression of dementia, but the decline will continue until they no longer recognize family, their role in their family, or even the world around them. Loss of shared memories effects the wellbeing of the caregiver and frequently leads to depression and feelings of deep loss.

Many caregivers lose their independence and ability to socialize like they use to. They might shy away from friends and family events for fear of what others might think or say about the one they are caring for. They might feel ashamed of inappropriate comments or actions that the person with dementia might say or do. Dementia can cause inhibition with action and words, leaving many speechless and looking at the caregiver for direction as what to do next. This embarrassment causes isolation for the caregiver.

You can help your friend by being a good listener. Even if she yells, screams or cries, just being there for her will bring her comfort. Let her know that it is normal for her to feel frustrated and upset. Build her trust by being a good listener.

Do not personalize what she says to you. You are not in her shoes, and you have not gone through what she is going through now. I have heard caregivers say, "She is not the same mother I knew," or "She hates me."

Caregivers go through the grief process, and it is not easy for her to be on her own. Make sure not to judge what she says, just listen. Education about dementia and the different types of dementia is important. If the caregiver knows what behaviors each type of dementia exhibits, and how to deal with them, they will not be so overwhelmed when they happen.

Offer to go shopping for her or help her clean her home so she can take a break. Many times, caregivers will feel inadequate if they accept your offer. Remind her that you care greatly for her and that you understand that she could use a pair of extra hands. Tell her you would like to do your part to take off some of her burdens. At some point, she will no longer have her caregiver role. You will play a big role in getting her settled back into a life without caregiving.

Encourage her to go to Caregiver Support Groups. There is one being held, once a month, at Quail Park on Cypress, 4520 W. Cypress Ave. in Visalia. It is always on the third Tuesday of the month from 10:30 a.m to 12 p.m. There is another Caregiver Support Group on the third Friday of the month, at the Remington, 2727 N. 11th St., Hanford from 10:30 a.m to 12 p.m.

Perhaps you or another friend, can watch her mother, while she attends. She will learn different ways to be able to handle the difficult behaviors that come with dementia. Best of all, she will realize that she is not alone. There are hundreds of caregivers in our area going through the same thing she is. We all need to be there to support the caregivers in any way we can.

Kimberly Jensen has been working with Quail Park as a Senior Resource Advocate for over ten years and has helped hundreds of families find solutions to their senior problems. If you have a question, you can send it to her at KimberlyJ@QPCypress.com or call (559) 737-7443.