If you are caring for a person living with dementia at home, Mondays with Mimi is where you can have your questions answered. In her 20 years at St. John’s, Mimi DeVinney (our Dementia/Quality of Life Specialist) has heard dozens of questions about caring for people living with dementia. Check this page on St. John’s Online Dementia Resource Center to see Mimi’s answers to submitted questions.

What can I do about my wife constantly asking to go home? I tried redirecting, telling her I would bring her later or tomorrow, and countless other strategies. Nothing seems to work. She is also saying she is going to die. -Gabe K.

Dear Gabe:

You sound tired. And no wonder–it’s exhausting to constantly have to respond to the same things, over and over again.  

You say you’ve tried countless other strategies and that’s good. The same replies don’t always work the same way on any given day (or even within the same one!)

It helps to have a few different strategies. I don’t know which ones you ‘ve tried, but I can tell you a couple with which I’ve had luck. As you’ve been doing, you can try to postpone: “We’ll go when the weather is better.” “It’s too late tonight”. “The car isn’t working.”  Maybe you can make a list for yourself and see how many you can create!

Or, you might try asking where home is. There might be different answers to that at different times, too. However, it might give you an idea of what she’s feeling at the moment. Is she missing a particular place, time, or people? Having some photo albums (or videos?) to look through and discussing those places might help some days. If it’s your first house, you might say: “I remember the time we had that big snowstorm and I had to shovel that driveway!”, or talk with her about similar memories that you share. Or maybe it’s a place from her childhood and you can look at pictures of her parents, or talk about the school she attended. Then, try using those conversations to lead into an activity: “Your mom made good cookies. Let’s have some cookies right now,” or play some familiar music from the time about which she is thinking.  If you notice she tends to ask at a particular time of day, try to initiate an activity before that time.

Sometimes going for a walk or a drive, and then “coming home” helps.

Do you know what is prompting her references to dying? This is another situation that probably requires more than one answer. On some days it might need some exploring of why she is saying it. Is this something she is fearful about? Is something physical bothering her, (a stomachache, for instance), and that’s how she tells you?

It also might work sometimes to say “Not today!” in a light tone, and then direct the conversation elsewhere or introduce an activity, without dwelling on it.

I wish I could tell you the perfect answer to either of these, but it just doesn’t exist. The only sure things is that this stage will pass, even if it doesn’t feel like it now. At some point she will stop asking, and you need to get through it in the meantime. So while this includes having various strategies in your responses, it also means making sure you get regular breaks. If you haven’t already, please tap into any support you can get from friends and family, and look into your local organizations to see what resources they have available in respite, or companion care, or other options. This is a full-time job, and you need to get breaks so you can stay healthy and mitigate your stress.

I took 24/7 care of my husband until he passed in April. He was a gentle man clean until the end. He told me that he loved me about two weeks before he died. He had only one word answers after that. Is it normal for a dementia person not to have any expression of face? I never knew if I was giving him the kind of care he wanted. I did everything, and he did not complain. He was never in pain. He just quietly slipped away. I just worry with the question, “Did I do enough?” “Was I doing it correctly?” “Did he know that I loved him dearly?” I had hospice in four days a week and we/I kept him clean, dry, warm, well fed, etc. He was just such an appreciative husband for over 53 years. – Bev S.

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