Leaving PWDs home alone

Iris L.

This is something that has bothered me for quite a while. As unpleasant as it may sound, many PWDs are functioning at the levels of children. They are not safe to be alone because they have no or very little concept of causality. Meaning, they do not comprehend if...then... If there is an emergency, then do...what? They will not be able to say. Or if they do manage to say the correct thing, they will not be able to act in an emergency. So many things could go wrong, but they will not be able to handle anything. They get too confused, and they cannot follow steps. When I read various posts of a PWD being left alone, I ask myself, would I feel comfortable letting a seven or ten or even twelve year old do this independently, for a few hours, overnight, or a few days? I think people have too high expectations. PWDs are not children, but their functional levels are low. They cannot protect themselves.

I feel very anxious when I read of PWDs being left home alone. Perhaps it is because of my background of working with children. It may be considered disrespectful to think of a PWD as functioning like a child, but I see no other way to maintain safety. Does anyone have a better suggestion?

Iris

Ed1937

Iris, I get what you are saying. I think most of us will have, or have had to make the decision whether or not we could leave our LOs alone, even for a quick run to the store. And I think most of us will choose to make that quick run, even though we are taking a small chance. Even if they didn't have dementia, things can happen quickly, and they may not be able to call for help. Think of a perfectly well person tripping, and being unconscious from bumping their head on something. But I do understand your point. We really have to be careful when dealing with things like this.

I remember Michael, a PWD, saying that people are too quick to take the keys away when a diagnosis is read. Certainly many people with a diagnosis have the ability to do most things for a period of time. I can understand his point of view too, and it's up to us to decide if they should or should not be permitted to drive. But there can be a very hard price to pay if we get it wrong. Even lives to potentially be lost. Decision making is really hard.

I didn't expect you to get many replies, but I didn't want the thread to go with nothing. A lot of what we do is subjective.

June45

Iris, I agree with you 100%.

SDianeL

Iris L, you are absolutely right. My DH started having memory loss 2 years ago. Got the diagnosis 18 months ago after the 3 hour test. The Neuro Psychologist who administered the test told me point blank that he should not be driving. She said he had visuospatial difficulties & couldn't determine speed, distance and that he could have an accident. I didn't really want to take his keys away. He only drove a short distance to the store in familiar area so I didn't think it was necessary. I also dreaded to tell him. Then she said that once the diagnosis is in their chart & they are in an accident, even if it's not their fault, we could be sued & lose everything. I told him the doctor said he shout not be driving anymore & that we could lose everything, and he reluctantly agreed to give me his keys. We then moved into an small apartment & were evaluated by the VA for caregiver support. The nurse-case manager evaluated our living conditions & then asked my DH many questions. One question really got my attention. She asked him what he would do if the apartment caught on fire. He took a very long time to answer, looked confused & then flatly said he guessed he would try to put out the fire. Not call 911, not get out, just try to fight a fire. She talked to me later & said under no circumstances should he be left alone. Period. No exceptions. He can't use a phone. We got an alert button in case something happens to me, he could just push the button. I'm not sure he would realize he could do that. There's more to dementia than memory loss. There are visuospatial issues, lack of logic & reasoning, that could be deadly. I never leave him alone. I couldn't live with myself if anything happened and I sure don't want to lose everything we've worked for.

ThisLife

Iris, I feel asking what the LOs functional capacity in terms of life ages/stages. Support for care givers is sorely lacking in the US unless you have money. It leads to some really tough decisions.

ButterflyWings

Iris, I agree with you completely.

My DH was scoring in the MCI range (27-28 of 30) on the MMSE when his docs told me to "watch him". At all times. This was soon after diagnosis, and I quit my job (temporarily I thought then) to do so.

The things I saw him do then, and through the years, gave me a better understanding of those dementia charts of the stages, that include an estimated mental age. I just couldn't fathom the young ages listed next to some of the stages...though I believed it. The reality is our PWD LOs are functionally children, even toddlers, much earlier than you'd think from just looking at them or listening to them even when they are rambling.

I think because there are so many laws against leaving (neglecting, endangering) children we don't do that. But there is not the same level of protection and concern for neglecting, endangering, and abusing adults/elders. So, we unfortunately play roulette many, many times with their lives and safety when we absolutely should not.

I am one who errs on the side of caution to the best of my ability. Call it overreacting, being over-protective if you want, but I know it is really being responsible. My DH made it easy for me to take the "line of sight" instructions seriously as he was always a wanderer and very independent (making it obvious that if left to his own devices, something seriously bad would eventually happen because of his curiosity and absolute cluelessness). Even now, when I leave the room briefly, he is into something or at least trying to get to it. In 6E, it is increasingly something totally inappropriate signaling that this grown-looking person is really about 2 years old, mentally and in terms of his judgment.

I also read somewhere that many PWDs problem behaviors may be due in part to them feeling underlying anxiety due to not having enough supervision. The boundaries are super-important.

Thank you for speaking up on this. Found the Tam Cummings chart that includes the "functional age" at each stage (see below)- e.g Mid-Stages: Stage 4 is the same as a 12 year old on up; Late Stages: Stage 5 functions like a 4-12 year old; and by Stage 6 we are dealing with a PWD LO who is mentally equivalent to a 2-4 year old. Leaving them alone for hours or overnight? Not good.

Microsoft Word - DBATv1.docx (wsimg.com)

Just Bill

My wife is in the watch at all times category. In the house she is like a hyperactive child getting into everything. Outside the house, I take her with me everywhere. I have to keep eyes on her at all times or she will wander off pretty fast. The house is escape proof so I can be in the other room or outside and not worry about her being a flight risk. At work she usually cooperates and hangs out in my office but if she wanders she can't escape. At golf she gets out of the cart but can't get too far away. It is exactly like babysitting a toddler 24/7.

June45

P.S. We have a friend who left his wife with Alzheimer's alone in the house for an afternoon. She wandered while he was gone and he was charged with neglect of a disabled adult.

harshedbuzz

Wise words @Iris L.

I will admit that I leaned hard into the Tam Cummings 7-Stages that @ButterflyWings mentioned when doing battle with my mom over the degree of supervision dad required. It especially irked me when she tried to frame her reluctance to stop his driving or leave him behind to travel as respecting him as an adult. As if children are not worthy of respect.

While I would not infantilize a PWD, safety is first in my mind.

HB

ghphotog

It's something you slowly begin to realize as time goes by that they can no longer be left alone even for a few minutes. That realization began dawning on me a couple of years ago. She wouldn't know what to do in an emergency, what if she fell and I'm not there or what if there was a fire? Or the wrong person came prowling around? etc. . . it's no longer is safe. She no longer knows how to use a phone or the cognitive awareness to find help. For a while I took chances and it all worked out but just as easily couldn't have.

The morning a realized I could risk it no longer was when she got up one morning before me and she went into the living room, not knowing where she was. She felt alone, scared and started crying because she was afraid. I would hear her crying and get up.

I can still leave her in the car for a few minutes to run into the store for a few items but if I'm gone longer than 10 minutes she will began to wonder where I am or where she is and get out of the car crying and looking around for me. If I lock the door and she opens it from the inside the alarm will go off and she won't know what to do but sit there with car alarm blaring until I get there and disarm it. Also, she is very vulnerable out there in the parking lot by herself and anything could happen or the wrong person may realize she is vulnerable so that option also is vanishing.

If we take our dog, a golden collie named Lacie with us and we're in the truck she is good for quite a bit longer because she doesn't feel alone with Lacie there with her. Lacie is also a good protector for her so I feel better in that case.

Jo C.

This is an important issue and fraught with so many bits and pieces. NOTE: In many abuse/neglect penal code statutes in many states, there is language that neglect can not be only if something actually happens, BUT it is where a person is in a situation that can "likely" to lead to harm, etc.

So; "likely" seems to cover leaving a dependent adult in a situation where there is the liklihood of something that could happen. This leaves us with knobs on a stove, knowing what to do in case of fire, needing 911, disaster such as an earthquake, chemical spill, police activity in the neighborhood, strangers at the door, wandering, dangerous objects within reach, etc. or any other potentially harmful situation.

We all have decisions to make and this is a hard one that sometimes comes with desperate necessity for a short period of time; however even that can unintentionally be a danger zone so to speak. Leaving for a long period is even more risky - not good nor safe long term or short term once the brain is compromised; logic, reasoning, judgment and know-how can be very sparse or not in place at all. As we know, sometimes a LO can rise to an occasion if their ability to reason and function is high enough; but other times not able or capable whatsoever.

J.

Joe C.

I feel you need to take the stage of the disease into account. When DW was in the early stages she was only struggling with things like paying bills and remember appointments she made but otherwise she was totally functional with all ADL, cooking, house cleaning, ect. As she progressed into early mid stage I started leaving her alone only for short periods and by late mid stage I would not leave her alone at all.

loveskitties

Iris, thank you for expressing your concerns...I totally agree that PWD beyond early stage should not be left alone. I had to have serious conversations with my mother about this very thing when she was my dad's sole caregiver (her choice).

Even those who have only infrequent lapses can be in danger if it happens when left alone.

It is difficult for a caregiver to "take away" freedoms from a LO, but given the "what could happens" it is not worth the risk.

Iris L.

The caregiver does not "take away" freedoms from the PWD. The disease takes away freedoms and capabilities. The caregiver ensures safety for the PWD despite the losses.

The danger may not be as severe as a fire, but as subtle as thinking that a cleaning solution is a beverage. Won't they realize it is not a beverage by smell or first taste? No, they may not.

I think the authorities partially contribute to this thinking. They give the impression that care for a PWD is merely custodial care. They do not stress that the primary care is ensuring safety for an adult of diminished capacity. The care should require education and training and financial support from the medical providers, whether from private insurance plans or government insurance plans. Then a lot of negative complications and sequelae have a chance to be avoided. This is my opinion.

Iris

ImMaggieMae

Iris, I absolutely agree with you. And I like your statement, “The caregiver does not "take away" freedoms from the PWD. The disease takes away freedoms and capabilities. The caregiver ensures safety for the PWD despite the losses.”

Ed1937

I didn't expect that many replies, but the content of them does not surprise me. Luckily I didn't have to take the keys because my wife did not drive due to Meniere's disease for about 30 years before she passed. But when one of our sons asked her how long it had been since she drove, she said "about 2 weeks".

upstateAnn

This is very timely. My DH is in the mild slipping into the moderate stage. I am fortunate to have the financial resources to hire a companion for him for two afternoons a week. I lunch with friends, work out like a demon at the gym and, sometimes, simply sit at a cafe by myself. My DH is usually good with this, but tonight we had the angry, you do not trust me routine, I do not ague. I simply say it is not up for discussion. I am in this for the long haul. That means “me” time.

Ed1937

Ann, what a great attitude. That should carry you a long way.

housefinch

Thanks so much for posting this. I have struggled watching my mom ignore the recommendation from 6 months ago that my stepdad shouldn’t be left alone. She is finally “getting the memo” as he moves into late Stage 5/early 6 (my rough estimate). I have a child with an intellectual disability and have been acutely aware of what impaired executive functioning means. My mom could not, or would not, face this reality. I’m also a physician and believe we physicians do patients a big disservice by tiptoeing around this issue. My stepdad was apparently given an MCI diagnosis initially when it’s clear to me he had dementia when he underwent neuropsych testing. All that did was prolong everyone’s denial. Sending everyone strength and best wishes.

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loveskitties

Iris and others, I guess we just see things differently about the subject of "taking away freedoms".

Dementia or any failing of mental abilities is the cause for sure, but it is left up to the caregiver to be the one who has to step up, and as you say, make them safer by not leaving them alone, not letting them drive, not letting them wander...etc.

In order to make them safer, the caregiver has to change what the LO can and cannot be allowed to do.

Regardless of what words are used or how it is said, it hurts the heart of all who love them.

Iris L.

Loveskitties, I often read that caregivers feel enormous guilt over "taking away" freedoms and such. I wanted to allay that guilt. The caregiver is not doing something to the PWD, but for the PWD. I agree that caregivers have a difficult job in enforcing safety and other caregiving tasks. IMO, developing a mindset to lower or eliminate guilt is a worthy goal. Caregivers often wonder if they are important too. Yes, they are! Why add unnecessary guilt to their load?

Iris

storycrafter

It's a scary prospect, especially dealing with anything beyond early stages. A caregiver must make astute judgment calls, take reality checks with professionals and other people, and trust in careful evaluation.

It does take discernment and close understanding of a loved one's condition in making such important decisions. It's nothing to take lightly and requires careful consideration. Every situation is different and aspects known only to the individuals directly involved would influence balanced decisions for specific circumstances.