Once a month, I'll answer your questions about dementia and care-giving here in my blog. If you've got a question, feel free to submit it.
Question: My mom is 86, has had two strokes, and now has vascular dementia. Lately every time I see her, she says how she just wants to die already. It breaks my heart every time. Any ideas on how to respond to that?
That is such a painful thing to hear from somebody you love. And unfortunately it’s also very common in people suffering from debilitating conditions, where quality of life is suffering.
So how on earth are you supposed to managed the tornado of emotions that naturally comes with these words? First, recognize that there are your feelings and hers that both need tending to.
Clearly your mom is in pain, whether emotional, physical, or both, to be feeling like she wants her life to be over. She might be feeling hopeless, like her situation can’t improve, or that life has simply become intolerable. It might not be that she actually wants to die, but that she can’t bear to live *like this.* It could be fear driving her words, or guilt that she’s needing to be cared for, or any number of other thoughts or feelings.
Even though it might be painful or awkward to talk about what is making her feel this way, it’s important that you don’t ignore it. Talking about death and the end of life can seem like the last thing you want to do, but having open and honest conversations can be one of the best things you can do for your mom.
Acknowledge how hard her situation is, that you understand the pain she feels, the fears she has. Validate how frustrating it is to feel out of control of this part of her life. Let her know that you hear her and understand that her feelings are real, even if you yourself are uncomfortable with them or hurt by them. Even if her brain is altered by dementia and she’s lost a lot of herself, her feelings are still very real.
You can also open up conversation by asking questions like “What’s making you feel this way right now?” or “What would you change?” Engage her in problem solving if possible, and see if together you can find ways to cope or to ease her situation.
If her dementia is advanced enough that answering questions or engaging in dialog is too difficult, the best you can do for her is put her feelings into words for her. Even a simple “I know how hard this is” with a reassuring touch can do a lot to soothe.
You might need to play detective to see if there are patterns to when these statements are made. Does she say it more often when she’s in physical pain? Does her medication schedule need to be adjusted? Does it come out when she’s had a lot of time alone? Is there anything you can connect it to or see that makes her feelings worse? Are there changes you can make to her environment?
If this is something she becomes fixated on, validate then distract and redirect. Staying on a painful subject can be draining, for both of you, so setting a limit on how long you talk about it is okay. Get her engaged in another activity, give her a snack, move the conversation to another subject.
You also want to consider the possibility she's depressed and whether an anti-depressant could help. Besides statements about wanting to die (and even threats of suicide), look out for persistent feelings of sadness, loss of interest in things they used to enjoy, sleeping too much or too little, a loss of energy, irritability and agitation, and loss of appetite. Many of these symptoms overlap with dementia, so if you are in doubt, talk to her physician or psychiatrist.
Now I also want to make sure that we care for your feelings and reactions to her desire to die as well. There are so many possible emotions you might have in response, and they are valid too. But your mom probably isn’t the person to help you deal with them...though there might still be ways you can support each other through this. Find a friend or family member to talk to for support, or a counselor if those conversations aren’t as helpful as you need them to be. You need to be heard as well.
Find ways to let your feelings out, even if you have to wait until you are on your own. Cry, scream, buy cheap plates to smash if you need to. Losing your mom and watching her suffer is painful, and walking with someone to the end of their life is a hard journey. Grief doesn't wait until the end. You might be tempted to numb, avoid, or distract from your feelings, but they will build up and just be waiting for you later. As you're able, find ways to let them out now.
If being around your mom when she’s feeling hopeless is too hard, allow yourself to take breaks and do what you can to take care of yourself. If at all possible recruit others to spend time with her to share your load. Be aware that her feelings can affect you too, and if you’re feeling overwhelmed or depressed, get extra support.
Remember that you are doing the best you can at all times.
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