Dementia and Independence

Posted by coloradogirl @coloradogirl, Thu, Oct 17 2:36pm

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.

@coloradogirl Such difficult decisions you all have to make! Several ideas come to mind. Is there a transportation service in your town? Can you work with a taxi/Uber/Lyft to have the same person who takes her also bring her home? Maybe one driver would be willing to work out an agreement with you. Also, have your MIL wear a medic alert bracelet (or something she might like) with your address and phone number on it. Dementia is such a hard thing to work with. I’m sure you’ve had many difficult conversations with her. Your husband has said to let her try going alone—what are his plans if she doesn’t return?

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Hi @coloradogirl What a tough circumstance to be working through. I wish I knew of some magic indicator, but I've never discovered or read about one yet.

In the case of my MIL and our daughter-in-law's father, I can say we acted immediately when we saw the first indications of an unsafe activity that could potentially put that person at risk of injury, getting lost, taken advantage of, etc. With my MIL it was when she wasn't sure who the UPS delivery man was. She thought him just a friend stopping by and she wanted to go with him. For her that was our indicator she was at risk and was not allowed to be alone any longer. In my DIL's case it was when her dad's anger elevated and they realized he might do that when he was out and about and not with them. In both cases this was when the families added a companion caregiver to the daily mix.

No doubt this is a tough one!

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@becsbuddy

@coloradogirl Such difficult decisions you all have to make! Several ideas come to mind. Is there a transportation service in your town? Can you work with a taxi/Uber/Lyft to have the same person who takes her also bring her home? Maybe one driver would be willing to work out an agreement with you. Also, have your MIL wear a medic alert bracelet (or something she might like) with your address and phone number on it. Dementia is such a hard thing to work with. I’m sure you’ve had many difficult conversations with her. Your husband has said to let her try going alone—what are his plans if she doesn’t return?

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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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@IndianaScott

Hi @coloradogirl What a tough circumstance to be working through. I wish I knew of some magic indicator, but I've never discovered or read about one yet.

In the case of my MIL and our daughter-in-law's father, I can say we acted immediately when we saw the first indications of an unsafe activity that could potentially put that person at risk of injury, getting lost, taken advantage of, etc. With my MIL it was when she wasn't sure who the UPS delivery man was. She thought him just a friend stopping by and she wanted to go with him. For her that was our indicator she was at risk and was not allowed to be alone any longer. In my DIL's case it was when her dad's anger elevated and they realized he might do that when he was out and about and not with them. In both cases this was when the families added a companion caregiver to the daily mix.

No doubt this is a tough one!

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Thanks, @IndianaScott. So far, we have managed to keep her from going out on her own because she was deconditioned from being in the hospital and therefore was a fall risk, so the PT said she had to be accompanied. At this point, they are still saying that she needs to be accompanied while walking due to strength and balance issues, but she's adamant that she's going by herself in a taxi and we can't stop her. Part of the challenge is that this comes up while we're both trying to work – she's so impulsive that she demands to go right this instant, which of course we can't do because of work commitments.

My concern is that she'll get away from home into a store or other public place, not be able to figure out how to get home, and have a public meltdown. In the hospital when this has occurred, she has shouted, used profanity, thrown things, and once even made a nurse cry. But maybe she will be fine, and then I have kept her home against her wishes when I didn't need to.

We heard today that the speech therapist is coming on Saturday to do the cognitive evaluation. Maybe she can give us some insight, since hubby seems to think she's fine (just being difficult) and I'm not sure what the real story is.

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@coloradogirl

Thanks, @IndianaScott. So far, we have managed to keep her from going out on her own because she was deconditioned from being in the hospital and therefore was a fall risk, so the PT said she had to be accompanied. At this point, they are still saying that she needs to be accompanied while walking due to strength and balance issues, but she's adamant that she's going by herself in a taxi and we can't stop her. Part of the challenge is that this comes up while we're both trying to work – she's so impulsive that she demands to go right this instant, which of course we can't do because of work commitments.

My concern is that she'll get away from home into a store or other public place, not be able to figure out how to get home, and have a public meltdown. In the hospital when this has occurred, she has shouted, used profanity, thrown things, and once even made a nurse cry. But maybe she will be fine, and then I have kept her home against her wishes when I didn't need to.

We heard today that the speech therapist is coming on Saturday to do the cognitive evaluation. Maybe she can give us some insight, since hubby seems to think she's fine (just being difficult) and I'm not sure what the real story is.

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Good morning @coloradogirl While it is always nearly impossible to tell what is happening in another's home, it sounds to me as though your MIL's anger and physical reactions are more than a person 'just being difficult' unless that is how she acted with your husband all his life. Personally, I hope not!

In our case, with dementia, we found the ability of some family members to accept the presence and overpowering impacts of the disease to vary greatly, Some were quick to acknowledge some 'outside force' was at work, some took a long, long time. In my family, I also had to realize this with my wife while she fought her war with brain cancer. I had to accept that it was her disease that was running her life, not her any longer, no matter what I was wishing for. It's hard, if not impossible, to know when exactly the disease 'took over' with my MIL, but with my wife I knew right away. We'd been married for 27 years when she began to exhibit symptoms and was diagnosed so I knew her well enough, when I was honest with myself, I accepted she was a different person at that point. I wished it wasn't that way, but again the disease was running her life, not her. I also came to know no disease is rational so I needed to accept and act as her caregiver, guardian, and guard immediately.

I hope the speech therapist can give you some insights.

Strength, courage, and peace

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Also, I suggest you ask her Dr., if she has a compassionate one, to tell her that she can not go alone or whatever the restrictions are. I have found that my husband will accept it from the Dr., but he would never comply with what I or a family member told him. We were just trying to control him!

Do the best you can and take one day at a time. With dementia patients each day is a new start and some are better than others.

Ruth

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@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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@becsbuddy

@coloradogirl Such difficult decisions you all have to make! Several ideas come to mind. Is there a transportation service in your town? Can you work with a taxi/Uber/Lyft to have the same person who takes her also bring her home? Maybe one driver would be willing to work out an agreement with you. Also, have your MIL wear a medic alert bracelet (or something she might like) with your address and phone number on it. Dementia is such a hard thing to work with. I’m sure you’ve had many difficult conversations with her. Your husband has said to let her try going alone—what are his plans if she doesn’t return?

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I fixed it! I meant Lyft not Lufthansa! These auto corrections!

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@becsbuddy

I fixed it! I meant Lyft not Lufthansa! These auto corrections!

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LOL, there are moments when one of us flying to Germany does not sound like such a bad idea. 🙂

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@rmftucker

Also, I suggest you ask her Dr., if she has a compassionate one, to tell her that she can not go alone or whatever the restrictions are. I have found that my husband will accept it from the Dr., but he would never comply with what I or a family member told him. We were just trying to control him!

Do the best you can and take one day at a time. With dementia patients each day is a new start and some are better than others.

Ruth

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We will talk to him. Thank you for the suggestion.

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@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.

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@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

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@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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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

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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@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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