Ask Miriam – October 2023
Dear Miriam,
My grandma was diagnosed with early-stage dementia a few years ago, right about when I graduated college, so I offered to move in with her. I was able to help out with cooking, cleaning, and driving, and she was pretty independent. Unfortunately, however, she is now in a nursing home after falling and breaking her hip. After surgery, they sent her there to get rehab. I am only 25 years old, and my mother, who is her only child, has multiple sclerosis and is barely managing herself and my younger brother. It has been a month now that my grandma has been in the nursing home and every time I visit, she begs to come home. I feel terrible, but her dementia has gotten so much worse since the surgery. She is using diapers and half the time she doesn’t remember my name, plus she seems really weak, only walking a few steps with a walker. I’m scared for her to come home, and I don’t think I can manage taking care of her. What do I do?
—Fearful Granddaughter
Dear Granddaughter,
I can imagine that it has not been easy for you to be your grandma’s sole caregiver, even when she was more independent. As you consider whether or not she can come home, know that whatever you decide, you need to take into account your own needs as well as your grandma’s.
Have you had a conversation yet with the doctor about her progress in healing from the hip surgery and the progression of her dementia? It would be important to get a sense of what her abilities are going to be and whether the doctor thinks she could continue to live in a home setting. Ask the doctor whether your grandma will need ongoing 24-hour supervision due to her physical and cognitive decline.
Then think about what you are realistically able to do. Do you work, go to school, or have other responsibilities? Are there financial resources to bring help into the home while you are busy or not there? Does your grandma have long-term care insurance? If so, you or a trusted advisor should read the policy and see what it covers.
Consider your own mental, emotional, and physical health. Even with help in the home, there will be much to manage in terms of your grandma’s daily living needs. You will need regular breaks to get some down-time for yourself outside of caregiving.
It may be reassuring to know that there are other types of living situations for someone who is not able to be cared for at home. For instance, a small board and care, where older adults with physical and/or cognitive issues share a home (looked after by nurse’s aides) is a possibility. Nursing homes, which can be paid for by the state, also provide care for those who need help with their activities of daily living, such as bathing and dressing.
Remember that if your grandma lives elsewhere, you will still be able to visit her and continue to have a relationship, even with the changes that progressing dementia will bring. And it’s important for you to get support, so perhaps consider joining a support group or talking to a counselor. For more information about support groups for Young Adults and other dementia-related issues, please visit our support groups page, or call our Helpline at 844-435-7259.
Best,
Miriam
Questions for Miriam can be sent to askmiriam@alzla.org.