Caregiver Stress- A Caregiver Story

About a year ago a very nice couple came to see me to discuss long term care planning. Both were dressed nicely and as I introduced myself, the husband told me that his wife had dementia so she might not understand everything being said during the meeting. She was very pleasant and said hello and sat and listened quietly to our conversation.

During our meeting we discussed at her needs, and I learned that her husband was providing a lot of assistance to his wife. He told me he picked out her clothes and helped her dress, and even did her makeup! She looked great and the two of them were going out to lunch after our meeting.

Fast forward to a few months ago. The husband called to make an appointment and this time he did not bring his wife. He hired a sitter for her as it was no longer easy to take her out. When he arrived, he looked very different from the last time I saw him. His eyes were red and ringed with dark circles and he had aged at least 5 years.

By this time, he was not only doing all his wife’s self-care, he was also doing all the cleaning, shopping, bill paying, home maintenance, juggling doctors’ appointments, and getting very little sleep. His wife’s dementia had progressed. His once sweet smiling wife had become an angry, non-compliant patient and was sundowning (a condition that causes her to sleep during the day and stay awake at night). Afraid to leave her roaming the home at night, he tried to catch little naps when she was sleeping during the day, while still attending to the chores associated with caring for someone with advanced dementia.

My client was suffering from caregiver stress to the point of collapse. While his wife was getting all her needs met, he clearly was not. As he described how much he wanted to care for her at home, he also described his sleepless nights, trouble eating, and bouts of depression that worried him. Who would take care of his wife if he couldn’t?

So, what legal advice did I give my client? None. He didn’t need me to be a lawyer, he needed me to be the counselor, the source of information, and the person to tell him that he had done enough and that he needed help. It was with a sense of relief that he agreed.

We discussed how to apply for in home assistance to alleviate his workload, and what to do when the time came for her move to assisted living dementia care or skilled nursing.

I provided him the information for calling the Area Agency for Aging and I explained about the wait list for services at home in Florida. I coached him on how he should answer questions. The biggest mistake caregivers make is sugar coating the reality of day to day life caring for a person with advanced dementia. I told him to describe your worst day. Tell them honestly about your lack of sleep, and how you feel guilty that you can’t continue to do this alone, how you feel angry sometimes at the life you imagined at this point in your life and the life you have, and how you sometimes wish you could run away and forget all this. We talked about all of this and I assured him that all those feeling were normal in this situation and to be expected.

I gave him information of a local caregiver support group that would provide adult day care for his wife so he could attend. There he could not only get support from other caregivers, but tips and strategies for dealing with the stress.

A few weeks later he called to tell me, that after going through the screening process, his wife received services at home within two weeks. He received 25 hours of services a week allowing him time to go shopping alone (a treat he said), have lunch with a friend, or take an uninterrupted nap, and not worry about his wife for a few hours.

Caregiver stress is very real and can significantly affect the health of the caregiver, sometimes to the point that they become ill themselves. My best non-legal advice to every caregiver is to take care of themselves first. Like the flight attendant says,  put your oxygen mask on first before you help others.

If you or someone you know is suffering from caregiver stress, please reach out and ask for help.  Click this link for a Caregiver Stress Test for yourself or for someone you know. https://www.alz.org/national/documents/brochure_caregiver_stress_checklist.pdf