Is it normal to feel like you are a prisoner in your own home when caregiving for a spouse with dementia?

2 answers | Last updated: Sep 23, 2016
A fellow caregiver asked...

Is it normal to feel like you are a prisoner in your own home when you spend 24/7 with your spouse that can't be left alone and doesn't want anyone staying with him? I retired 3 years ago, because my spouse has short term memory loss. He hasn't changed a great deal but can't remember anything that has happened 5 minutes ago or if he has had a meal can't remember what he had. He gets very upset if you go somewhere in the car because he can't drive any longer, we go through this every time we go somewhere. He also gets mad about having to put a seat belt on everytime he gets in the car. I feel very anxious and overwhelmed about going through this all the time.

Expert Answers

Jytte Lokvig, PhD, coaches families and professional caregivers and designs life-enrichment programs and activities for patients with Alzheimer's disease and related dementia. Her workshops and seminars help caregivers and families create a healthy environment based on dignity and humor. She is the author of Alzheimer's A to Z: A Quick-Reference Guide.

Your husband is lucky to have you. You obviously love him very much to give up a job to care for him. You ask if it's common to feel trapped as the sole caregiver. Absolutely! And you need to take care of yourself as well. There's no question that you must bring someone in to help you out. Since he objects to "someone staying with him," you can change the message and use what I call a "loving lie." No doubt your husband feels diminished at the idea of needing a "sitter" or "caregiver" "“ after all, that's for babies "“ He probably also feels insecure if you leave the house. Try this: When you bring in your relief person, tell your husband that your "friend" (the relief person) needs to work on something at your house and you're going out for supplies but you'll be back as soon as you can. Then stay out for a couple of hours.

Obviously, you'll need to coordinate this scenario with your relief person ahead of time, so the two of you can stick to the same story. No doubt the thought of "lying" to your husband goes against your grain, but think of it as a lifesaving measure. You absolutely must get some respite. Caregivers have very high rates of stress-related illnesses and unless they take care of themselves, many are outlived by the people they care for.

"Loving Lies" are necessary tools for caregivers of people with Alzheimer's and dementia. Because the person with memory problems typically no longer thinks logically, it's futile to try reasoning. "Loving Lies" are scenarios that make sense to the demented person, fit with his thinking at the moment and thus become "his truth." Your husband doesn't understand your need for respite to stay healthy; he may even argue that he's there to take care of you. If you tell him that he's incapable of taking care of you because of his dementia, you'll only upset him and diminish his ego, which may agitate him further. To keep the peace, agree with him and thank him for helping you. The better he feels about himself, the easier it is on you, so try to find reasons to compliment him and boost his ego, even if you don't mean it.

The car is a common sticking point in dementia caregiving. The car represents freedom and self-determination. Giving up driving is symbolic of giving up one's independence. This tends to be especially true of men, for whom the car is often a sanctuary. His ego is crushed every time he's reminded of his decline.

You have options:

You can ask a friend or family-member to drive both of you. If your husband questions why you're not using your own car, tell him that HE noticed a funny noise last time you were out and you haven't had time to check it out yet. Talk to an authority about a "stop driving order" in writing; this could be his doctor, a police captain, or your local motor vehicle department. Speaking of the latter, many DMVs will test to determine a person's ability. You can then keep the written notice in the car to show him when necessary. Thus someone else is the "bad guy" and you can sympathize with your husband when he proclaims that they have no idea of what they're talking about. (You'll want to keep copies of such a notice, in case he has a fit and tears it up.)

Important note: You want to avoid being the bearer of bad news. Let doctors tell him he has dementia, DMV tell him he can't drive, the pharmacist tell him he must take his medication, etc. It allows you to act as his ally and strongest supporter. So, when he protests that he's perfectly capable, instead of reminding him of the contrary, you can sympathize with him and say, "Oh, I'm so sorry; I totally understand why you're upset. Unfortunately we have no choice but to abide by it. Doctor's orders, you know." And then immediately change the subject to a favorite topic.

Best of luck to you with your health, strength and happiness. Remember that taking care of YOU is the biggest gift you can give your husband.

Community Answers

Barb in illinois answered...

Thank you very much for this response. It is very helpful and I know I need to get out of the house by myself once in a while. I think the guilt of leaving him is the biggest problem. I always think he needs out of the house also. I also take care of a grandson that is 9 months old 4 days a week, so all 3 of us walk at least 25 minutes each day. When it turns cold we won't be able to do this any longer. I have taken care of the baby since we was born and he is what makes me smile each day. Barb