1. < Caregivers: Dementia

Dementia and Independence

Posted by coloradogirl @coloradogirl, Oct 17, 2019

Hi all. I know that some on the forum have experience caregiving for people with dementia and I'm wondering if I can get some advice on how to know when it's no longer safe for them to go out unsupervised.

My husband's parents live with us. His mother has memory issues and some dementia, but she's also very intelligent, which makes her fairly convincing in terms of being able to handle herself. That said, we are told that her illness is "permanent and progressive" and she's showing signs of poor decision-making, impulsiveness and loss of memory. (But, it could be argued, she has always been impulsive, stubborn and occasionally belligerent. It's her personality as well).

We're in a bit of a quandary here - we know she has deficits but no one (including us) is clear on how severe they are. We don't have anyone saying whether she can safely go out on her own. After weeks of advocating for her, we finally have a speech therapist coming in to do a cognitive assessment but that won't happen right away. In the meantime, she's pushing hard to go out on her own. Just this morning, she had a meltdown when she was ready to leave in a taxicab and we told her that she couldn't because her in-home PT was on her way for an appointment she had forgotten. Do we let her go and see what happens (hubby's preferred strategy) or do we try to keep her home in the name of safety? If we do, are there legal issues with making an adult stay housebound when they don't want to?

Thanks in advance for any advice you can provide. This is a tricky situation so while I know that there's no easy answer for this, I'm hoping that someone else might have had to navigate these waters before and can help us think through it.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

coloradogirl | @coloradogirl | Oct 19, 2019
In reply to @gingerw "@coloradogirl When a person's life diminishes due to dementia and aging, it's a tough place to..." + (show)
@gingerw

@coloradogirl When a person's life diminishes due to dementia and aging, it's a tough place to be. There is added resentment at the loss of independence, and the idea "someone is following me/doesn't want me to do something". A good evaluation by the speech pathologist may be a step towards where you need to go now, and like @mftucker said, hearing the parameters from someone other than family might make the difference. A tracking device could be employed also, similar to what is found here https://www.alzheimers.net/8-8-14-location-devices-dementia/ Would something like this help you?
Ginger

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This is a great observation and we had begun to notice this also. The speech therapist was supposed to come today but never called to schedule, and the home health agency's follow up on anything related to her cognitive issues has been pretty much nonexistent. We may have to switch agencies to one that will take us seriously because we have been asking for six weeks now and nothing has been done. We have had great experiences with other agencies but while the professionals in our home all agree that she really needs this, their office's response has been nill.

REPLY
Mentor
Becky, Volunteer Mentor | @becsbuddy | Oct 19, 2019
In reply to @coloradogirl "Thanks, @becsbuddy. That's exactly the hard part. My husband seems pretty convinced that the tantrums are..." + (show)
@coloradogirl

Thanks, @becsbuddy. That's exactly the hard part. My husband seems pretty convinced that the tantrums are just her personality and she'll be fine to get home by herself. And he might be right, I am just not sure. She locked herself out of our house yesterday and couldn't figure out how to get back in. (Could not remember the code and did not think to knock or ring the doorbell). I saw her peeking in my office window and went to get her. He's the primary decision-maker since it's his mother, and it's possible that I'm over-reacting, but I have also been home for the past 2 years while he traveled, so I watched her decline and lived with most of the tantrums.

There is a transportation service, and they would take her, stay with her, and bring her home, but she says that she doesn't want to pay for that. (Although they could afford it). I think she wants to be out on her own the way she would have been a few months ago. This is not so much about going places (because he would take her) but having the freedom to go alone and not having to be supervised.

She's so stubborn that I'm not sure I could get her to wear the bracelet but I will bring it up with him again and see if he's willing to broach the subject. Thanks for the advice.

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@coloradogirl I just had another thought. Your MIL says she doesn’t want to pay for some rides or taxis, so maybe you could set up a plan in advance with the taxi service. You pay the company for 3 round trip rides (or how many you want) per week and then make up some ‘professional’ looking coupons for her to give to the driver. It might make her feel more independent. Lots of other good suggestions here! Let me know what you do. Becky

REPLY
pattyinal | @pattyinal | Oct 19, 2019
In reply to @gingerw "@coloradogirl When a person's life diminishes due to dementia and aging, it's a tough place to..." + (show)
@gingerw

@coloradogirl When a person's life diminishes due to dementia and aging, it's a tough place to be. There is added resentment at the loss of independence, and the idea "someone is following me/doesn't want me to do something". A good evaluation by the speech pathologist may be a step towards where you need to go now, and like @mftucker said, hearing the parameters from someone other than family might make the difference. A tracking device could be employed also, similar to what is found here https://www.alzheimers.net/8-8-14-location-devices-dementia/ Would something like this help you?
Ginger

Jump to this post

Interesting. My husband, who has MCI that doesn’t seem so mild any more, is just the opposite. He doesn’t want me out of his sight. So I’m the one who feels that someone is following me all the time. 😜At least I just about always know where he is.

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1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Oct 20, 2019
In reply to @pattyinal "Interesting. My husband, who has MCI that doesn’t seem so mild any more, is just the..." + (show)
@pattyinal

Interesting. My husband, who has MCI that doesn’t seem so mild any more, is just the opposite. He doesn’t want me out of his sight. So I’m the one who feels that someone is following me all the time. 😜At least I just about always know where he is.

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@pattyinal That's a great attitude but perhaps tiring, right? Does your husband have any group activities that he can participate in that would free you up for a break? That could be a healthy option for you both.
Ginger

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1 reply
pattyinal | @pattyinal | Oct 20, 2019
In reply to @gingerw "@pattyinal That's a great attitude but perhaps tiring, right? Does your husband have any group activities..." + (show)
@gingerw

@pattyinal That's a great attitude but perhaps tiring, right? Does your husband have any group activities that he can participate in that would free you up for a break? That could be a healthy option for you both.
Ginger

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There is something available at a local church, but I haven’t been brave enough to broach the subject with him yet. 🥴

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1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Oct 20, 2019
In reply to @pattyinal "There is something available at a local church, but I haven’t been brave enough to broach..." + (show)
@pattyinal

There is something available at a local church, but I haven’t been brave enough to broach the subject with him yet. 🥴

Jump to this post

@pattyinal While I cannot tell you what to do, or what to say, let me share with you the way I handled an awkward conversation. If this is a group for your husband and his health issues, you could say that you would like to know what this group is all about and see if it is something that you could get more information about his situation. Take him with you to that group. Then, when he sees that it is for his condition and not necessarily for more information for you, you could say, "oh wow look at these people and what they are working on! I bet something like this could be beneficial for you too! What do you say? Would you like to try it?" This way it is looking like a happy surprise. And don't forget about taking care of yourself, too! It's tough to be in caregiver mode. I hope you will let us know what happens.
Ginger

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