Am I overly protective, or too involved in my parents living situation?
I care for my parents who live across the street from me. They are 89 years old with dementia, vision problems, mobility issues, heart problems. They "think" they are living independently, but do none of the things that independent people do in maintaining a home. No cooking, laundry, housekeeping, financial tasks, driving, etc. I feel I cannot leave my home and leave them without someone nearby. They tell me I should live my own life, and if something happens, 'oh well'. I can't in good conscience do that, and know that I will be the one with the consequences anyway. They seem to have lost the ability to see the consequences of their actions at this point. Found dad on a ladder, with one foot on the step and one in the sink trying to change a light bulb. They do not see the risk in anything they do. I assume that this is part of dementia? If I say anything they get defensive and state they are "doing just fine, thank you". How does one reconcile the worry and still have a part of a life left in this situation? I am 65, so am no spring chicken myself and the constant anxiety and frustration are taking a toll on my health. Oh, I am an only child, so there is no one else, and they refuse other assistance to such a point that I then worry about my dad having another stroke. Am I overly protective? I know that I am overly stressed, but feel I need to have my ducks in a row, and avoid issues if I can. Their ducks seem to have flown south - and I am supposed to go and find them I guess. HELP! !
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They are very glad for any help that you offer because it's spending time with you and they are receiving your love. And it's that which they are looking for, not the help itself. When others help, they feel helpless, obliged, and a burden. When you help, they feel loved.
It sounds a little wacky to the rest of us to think about a 90 yr old climbing a ladder. But maybe your dad just looks at it as living life as long as he can, and not being prone to worry about the consequences. He's not worried about death because if that happens, well... it was going to happen anyways. From his perspective, why worry about the eventuality of something you can't control?
This was the overall attitude of my wife's relative of 90 yrs old who told me that he had no problem with dying, but if it was a choice between today and tomorrow, he'd choose tomorrow but wouldn't be upset if it was today. His kids didn't get that. They were all afraid that he'd hurt himself or accidentally get killed and they wanted him to stay here more than he wanted to stay here. I learned a lot from that man about doing what you can and leaving the rest up to God, nature, and time.
Do what you can and accept that the inevitable will happen some day. You can't be there all the time and my guess is that your folks don't expect you to be. When they say, "if something happens, oh well", that's not a statement from dementia. That's they way they can release you and a hope that you will come to understand they are okay with their future and that you should be as well.
Of course your parents aren't living independently. They depend on you. The fact that they can't/won't acknowledge this makes everything at least 50% more complicated. But that is an almost universal characteristic of dementia.
Actions and consequences very often get separated fairly early in dementia.
Personally, I think you are correct that you shouldn't go away without arranging someone else to keep an eye on your parents. In fact, I wonder if they haven't reached the point where they should not be living on there own. At a minimum they perhaps need someone to come in for at least a short time each day. Eventually they may need a long term care facility of some kind.
What if you were to say, "Now that I'm 65 I've decided I am going to retire from some of the chores in my life, and have more leisure. I'm not going to be cleaning your house anymore, or doing laundry. I won't stop until we have someone else who can come in an do it and I'll start looking for someone right away." And then look for someone who will come in daily for a couple of hours, do housekeeping tasks and be a companion. Someone who could say, "Oh, let me change that light bulb, that's what I'm getting paid to do."
Eventually people with dementia cannot live alone, even with a willing daughter across the street. Getting them used to limited help now would be good preparation for when for extensive help will be needed.
My husband was able to live at home with me the nine and a half years he had dementia. I made sure all of our kids knew that if something happened to me he absolutely could not live alone, no matter how much he protested or could pull it together and seem competent for a few days, he was not safe alone. And that inability to link actions to consequences was one huge factor that would make living alone unsafe.
Get them used to help now ... or it will be even harder not to be at their beck and call 100% of the time later. And remember -- this is for you, because you want to retire, not at all because they need help! :-)
Most of us want to live fully until we do die. And most of us can make reasonable judgments about the risks we are willing to take in order to continue to live fully. Those of us caring for someone with dementia have to factor in the decreased capacity for judgment and/or the inability to recognize consequences of actions and/or other cognitive impairments our loved ones might be dealing with. We have to ask "would he do this if he were in his right mind?"
And also we know that the consequences will effect many other people. An 89-year-old man balancing between a ladder and the sink to change a light bulb might fall and die, which would be sad for those left but might be a risk he's willing to take. "Oh well." But chances are much greater that he would fall and break his hip. Now he will have a hospital stay, a rehab stay, home rehab, pain medication, and possibly be immobile for the rest of his life. Which to a caregiving daughter (or a wife) is not "Oh well."
For someone late in life with dementia, I think there are worse things than dying. Loss of quality of life is (to me) more critical.
When my mother in her late 80s refused further tests on a growth detected during tests for something else, because, she said, if it was cancer she would refuse all treatment so why should she know, her kids all accepted that decision. When she balked at taking her blood pressure pills we all had a conniption fit. Having a stroke would seriously erode her quality of life (and ours, too.) (Mother really didn't understand the concept of preventative medicine. She'd take the pills when her ankles swelled. Otherwise why did she need them?)
Death is inevitable. But strokes aren't. And broken hips aren't.
Some of us are probably overprotective on some issues. But as Carolepage says, the caregiver "will be the one with the consequences anyway" so I think we are entitled to substitute our judgment when our loved one has dementia.
I know that this situation won't last forever, but my fear is that it will, and can, get so much worse. I feel like I am in an ocean, without a life preserver, and I can't swim much longer. It is easy to say get more help, but they will not allow it. Placement is not an option at this point either. So, here I am left waiting, waiting for them to pass on, waiting for the big accident, waiting for the little accident, waiting to see what happens tonight, or tomorrow. Relaxing is a thing of the past. A type A personality shouldn't be in this position (ha-ha). Well, I feel better at the moment so will try to get some sleep. Thanks again appreciate you all.