When do you actually know when not to leave them alone anymore

charley0419 · February 21

My daughter wanted me to ask Nurologist this question, now understand, as I'm sure i mentioned, my wife was diagnosed 15 months ago moderate onset dementia she is fine with EVERYTHING but no driving, doesn't have any desire to cook, has short term memory , repeats same stories you all get it and gets confused easy will vaccum. Can have conversations and all.also has anosognosia. I don't think there's an answer but never know. So let me know.

jfkoc · February 21

Good question...

I think safety is the key. If there is a fire, a fall etc, does your wife know how to call for help???

trottingalong · February 21

I can still leave my DH alone for a couple of hours at a time, but I do check in by calling or texting. Thank goodness he can still figure out both. I make sure my volume is up and I can answer immediately if he calls me. Thankfully he has no desire to cook or even drive. Things just go missing when I’m gone. So for now, I’m comfortable leaving basically once a day to go shopping and tend to my horse.

M1 · February 21

Charley, another way to think about this (and this applies to many decisions with this disease: if you're starting to ask the question, you may be close to having the answer. I believe the Tam Cummings model classifies stage 4/moderate dementia as equivalent to a teenager; stage 5 is equivalent to an 8-12 year old. I think jfkoc is right. If you have the sense that she could still know how to call for help in an emergency, then she may be okay. If not, then she shouldn't be alone. When my partner started calling me within minutes of my having left the house, I knew her days of being okay alone were over.

harshedbuzz · February 21

I have a couple of thoughts on this.

The first is that your neurologist probably doesn't have as much insight as you or your daughter in terms of how well your wife functions at home. S/he probably sees your wife once or twice a year in a clinical setting at a time of day when she "at her best" and you're able to get her there reasonably easily. And if DW is showtiming all bets are off.

That said, it is my experience that caregivers tend to look at their PWD with loving eyes and through rose-tinted goggles which means it can be hard for them to make decisions based on the care needed when the PWD is struggling the most.

My mom had a tendency to under-report or explain away many of dad's symptoms as if admitting to them was somehow disloyal or insulting. Do you and your DD agree on whether your DW is OK home alone?

I wonder if you might be doing something similar to my mom. Like you, she was a very devoted spouse. On the first of this month, you made a post about taking your wife in to be fitted for a mask ahead of radiation therapy. I replied wishing you a smooth experience. I'm at the doctor/hospital with my mom (no dementia) all the time and know that sometimes medical settings can be a real dog'n'pony show in the short-staffed post-COVID era. You replied "Like I said my wife not that bad yet. Repeating things confused at times no cooking 2 yrs but everything else she’s fine and no driving". It wasn't my intention to wish you well because your wife was seriously impaired but because the process of getting anything done in a medical setting can go sideways and you both don't need that. I took my mom into the ED at 3pm after a fall that resulted in a chip fracture in her wrist and didn't get home for 12 hours because of a malware issue with the software that does a preliminary reading on imagining meaning they had to do it old school which took hours.

I found the Tam Cummings stages with developmental age equivalencies very helpful around this kind of decision-making as dad's verbal skills remained amazingly intact and mom struggled with any limitations that would restrict her ability to get out of the house for a break or that might trigger his anger and aggression.

Tam-Cummings-LLC-Handouts.pdf (tala.org)

The bigger issue than memory here, IMO, is the loss of executive function-- the ability to do the quick "if.../then...) reasoning that would keep her safe if something unexpected happened. Mom had me come over when she had the HVAC system replaced and she had an appointment. It wasn't that dad "needed a babysitter" but that she didn't want him interfering with the planned install. While I was there, the techs set off the smoke detector soldering a pipe. Dad sat for about 30 seconds and then asked what the terrible noise was. I explained and he sat for another 20 seconds before standing up and saying "I must go get your mother" as he toddled off towards his bedroom. He didn't recall she was out; he didn't think to call 911 or ask me to and had no sense of urgency. In an actual fire, he would have perished. Mom never left him alone again.

HB

jsps139_ · February 21

With my DH …. He walked the same little route (1/4 mile) everyday until he decided to go a little farther one day and got lost - a gentleman asked him if he was ok and my DH told him he was lost and didn’t know where he lived. The nice man helped him find his way home, but I have not left him home alone since. (We now walk together everyday and I am with him 24/7.) Then my DH told me … when you leave, I think you are gone for good. How scary for him! I think … we don’t always know how bad things really are for them mentally when they are still functioning pretty well physically.

ButterflyWings · February 21

https://www.alz.org/help-support/caregiving/safety

Belle60 · February 21

I am so thankful for your post. I have been wondering the same thing. I think my DH is getting closer to needing someone home all the time but right now he is safe at home while I work. He can still use his phone and frequently texts me when he needs something. I will also check in with him during the day and can get home within 15 minutes from work. But I know it is coming. I am trying to hang on another year before I retire but not sure I will make it. Good suggestions! I know when I have set the smoke alarm off cooking😁 he responds, hears it and helps me turn it off. I have a front door camera that I check frequently and was thinking of getting one in the back of the house too.

charley0419 · February 21

https://alzconnected.org/discussion/comment/199119#Comment_199119

The part that weighs on me is "shit can happen in a minute".. but I hear stories on here how someone can change over night. If only this illness had same sensible path

ghphotog · February 21

You will know when the time is arriving. If you are concerned about them being alone then that probably is the time to never leave them alone.

For me it was a slow process. I was caring for my mom at the time as well and I had to take my mom to the doctor. I had an Alexia device and video camera in the living room setup where I could just talk to her. I checked the video camera and couldn't see her, then I called out to her on the Alexa and could hear that she was in great distress in the bathroom. She had made a mess and didn't know what to do. My mom was in the middle of a procedure so I couldn't leave. I called some good friends that are retired nurses and they went over and cleaned her up and put on clean clothes for her. My mom was not capable any longer to keep her safe either. Never left her alone after that. Took her everywhere with me, to work, golf, everywhere then I got her enrolled in a daycare program that was great. The staff there were so good to her and I couldn't imagine not having at least the daycare option.

Friends and family always told me to call them if I ever needed help, so I did. They watched her for me once or twice and never again so that option was out.

Quilting brings calm · February 22

Did your daughter ask you that because she was just curious? Planning for the future? Or because you two have differing opinions on whether she should be left alone now?

carefully consider your wife’s behavior and consider if you would leave a child alone that showed the same behavior. How is her mood when you leave and when you get back - is she anxious about being alone? Can you trust her not to open the door to strangers?

AnderK · February 22

My Tim sleeps in. I go do errands in the early morning because I think he will stay in bed til 11 AM.

Don't get much sleep as a result.

charley0419 · February 22

https://alzconnected.org/discussion/comment/199166#Comment_199166

We have different opinions on leaving her alone. But I know she won't answer door or phone if doesn't recognize name. My wife hinds it very very well.i truly believe in my heart she's safe for now.

harshedbuzz · February 22

@charley0419

With all due respect and sincerity, how does "My wife hinds [sic] it very very well" play into this exactly? If her executive function has tanked to the degree that she has not cooked in 2 years and her daughter believes she isn't safe home alone, explain to me how her grooming and manners will protect her in an emergency. Hiding a deficit isn't the same as not having one.

The other piece to this is your safety. What if you were running errands or had a doctor's appointment and were in a bad accident and transported to the hospital unable to speak? What if first responders ran your identification and called the number associated with to inform family? What if there was no answer, so they sent someone to the house? What if she didn't answer then? Or what if she did and she was stressed by your absence and the police contacted APS?

There was a gentleman in our IRL support group who biked to cope with the stress of caregiving. He lived on the same block as his youngest son and only ever biked if someone would be home there just in case. He wore a medical alert bracelet identifying himself as a dementia caregiver with his son's contact information. His wife wore a bracelet as well identifying her as a PWD and listing him and their son as emergency contacts. This strategy bought him about an extra year of freedom to grab respite on his bike.

HB

ButterflyWings · February 22

@charley0419 I am afraid you may be falling into the very common, very understandable trap of denial. It happens often because we love our PWDs and see what we want to see, being so close to the situation. The person looks like our adult LO, but their thinking, judgement, and reliability is going out the window. Or gone.

The wisdom on these boards from when I joined, was usually something like this: If you are asking, it is probably past time already. Better safe than sorry is not just a catchy phrase. Believing she is safe does not make it so. And with dementia, the odds are she is not.

HB makes a really good point in asking you to think about how many small unpredictable things that someone with increasing brain damage just can't be expected to safely manage anymore. And not all will lead to her injury or someone else's, but they could. It still means she needs supervision.

From what to do if the sink overflows and floods the kitchen or bathroom,
How to unclog the toilet after trying to flush too much of the wrong thing
To how to stop her finger from bleeding if (when) she slices the tip with a paring knife,
To how to stop a grease fire or melting plastic utensil after getting confused in the cooking process,
To how to shut off the screeching smoke alarm once it triggers, without falling off the chair
To how to get help when she suddenly can't figure out the phone anymore one day in a stressful situation,
To where she will wander to when she forgets you told her you were leaving and when you'd be back, etc.
Can she access a car? And God forbid one of the many slick predators latches on, either in person at your door or worse, via cell phone or computer. I could go on.
When she slips or trips, or falls, or drops a glass and there's shards everywhere that she tries to clean up
*We dealt with each of these "sudden surprises" and more with DH. And I was either in the next room, or just stepped out to grab his prescription or was doing yard work, thinking we still had time since he looked and sounded so capable. Until a moment later, each time, when he wasn't.

Love and convenience makes us wait too long sometimes. Trusting what we desperately want to still be true. Please honor your DD and DW and put the guardrails in place before they are needed. Wishful thinking can have tragic results with dementia. Its not worth it. DH was late 3, maybe very early Stage 4 when diagnosed and med team said "Watch him". They meant literally line of sight. What has your daughter seen?

You might continue to be lucky. But why play Russian roulette with our LOs and the trickster dementia?

M1 · February 22

I second everything Butterflywings and harshedbuzz have said Charley. I think you would be well advised to listen to your daughter on this one.

Joydean · February 24

I’m going to agree also that you should not be leaving her alone. My dh was in stage 4, decided to get up, went into the kitchen to get a glass of water. (We had some plastic glasses but he never would use them) he had to have glass. I was tired and didn’t think anything would go wrong, I was home with him so what could happen? I heard the glass hit the floor but was half asleep, he came back in to the bedroom room and said “I think my foot is bleeding “. I became fully awake, turned the light on and saw he had a big piece of glass stuck in his foot. He said it doesn’t hurt! Took me a while to get it out and a good while to get it to stop bleeding. Paramedics came checked it out. Scared the daylights out of me. No more glass anything in our house. Yes things happen but if I had gone to the kitchen with him he would not have been hurt. I knew then and there no way could he ever be by himself again. If that had happened in daytime and I wasn’t there he could have bleed to death!

elainechem · February 24

For me, I started thinking about this just months after my hubby was forced to retire after 35 years at his company. I had also stopped him from driving shortly after that. He still seemed to be fairly "with it", so I wasn't sure. One day, I asked him a few questions.

1. If there were a fire in the house, what would you do?

2. If there were a flood in the house, like from a broken pipe, what would you do?

3. If you were badly hurt, what would you do?

All three of his answers were the same. He would wait for me to return home and let me decide.

Bad answer! I envisioned him cutting an artery and sitting on the sofa and bleeding out while he waited for me to return. He didn't even mention calling 911. If he had done that, I would have asked him what he would say to them? Could he even give them the correct address?

I had a paid caregiver coming out within two weeks.

charley0419 · February 24

https://alzconnected.org/discussion/comment/199176#Comment_199176

You woke me up on this. Thank you never thought if something happened to me Thank you. Funny what you don’t consider

l7pla1w2 · February 25

https://alzconnected.org/discussion/comment/199113#Comment_199113

Be sure to register with your local police and give them a description of your DH, just in case they or someone else finds him.

I reached the "can't leave DW alone" stage recently. I had been volunteering locally three days a week and told DW I would be home for lunch. It started with calls, "Where are you? When will you be home?" It progressed to a delusion that goes something like this. "I used to live with a lovely man whom I loved, but he disappeared mysteriously. I don't know where he went, and I've been alone since. It's been years." Or, talking to me directly, something like, "Why didn't you tell me you were leaving [or divorcing] me?" DW implied there was someone else I was going to live with.

I think when DW is alone in the house, she thinks I'm gone completely and gets extremely anxious (understandably). But it's worse. I think she feels that way if I'm in a different room. And sometimes even when we wake up: "What time did you get here?"

I haven't yet figured what kind of in-home care I want. I don't think DW will be happy to have someone here as, effectively, a baby sitter, and neither of us is used to having anyone else in the house.

I have taken her to a day program several times so far, and I will keep pushing her to do that. Apart from freeing me for a few hours of the continuous attention she needs, she gets social interaction and mental stimulation that I don't provide.

When do you actually know when not to leave them alone anymore

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