How to determine when no longer advisable to leave LO alone
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Unfortunately I think you know the answer. It is past time.
A good rule of thumb is would you leave a 5 year old with him?
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Not there yet, but a good friend started using adult day care after her husband went for a walk, mistook a neighbor's house for his own, and kicked the locked door open. Like you, it was past time.0
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DorisEmma, I'm sorry you have reached this point. It is always difficult to know when the time has come for supervision all the time. Sorry, but it sounds like that time might have come for you. Now that the police have been with him, if anything else happens, you could be in legal trouble, and if he should get hurt, that almost certainly will be the outcome. The time has come for us, and somebody is always with her.0
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I don’t feel secure in leaving my DH alone either. What is working well for both of us is day care two days a week. He is safe and enjoys it. I have time to socialize, run errands, take care of business or see my doctors without having to worry about him. Also, there are no phone calls from him because he is too busy to wonder where I am and when I will be home. You may want to consider this option. It is very freeing. Best wishes to you.0
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Ditto, it is past time. And ditto to what Ed said. Now that the local police know how he reacted to your being gone, you could possibly get in trouble if you leave him again and he calls the police. I knew I couldn't leave my husband 2 years ago when I realized that he no longer knew how to use a phone to call me or to call someone else for help. I just don't go anywhere without him. As it has gotten harder to get him in the car I rarely go anywhere at all. I have hired a caregiver about 4x, less then ideal right now. No friends or relatives around. Sorry, but it sucks!1
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Thanks to that phone call, you may be on the APS radar as we speak. If you aren't now, you certainly will be if there's a next time.
My mom believed she could leave dad alone. Sometimes she'd dash out before he woke up or while he napped. Other than me she didn't have much in the way of help and was new to the area, so I was often entertaining her. She didn't want to engage a caregiver because of the cost and belief that he'd fight having a "babysitter", so he was alone after he should have been, IMO.
Mom asked me to stay at her house once while she was having a new HVAC system installed. Dad was in this spatially challenged phase where he was planning to turn their 6 x 12' utility closet into a Jack 'n'Jill suite with a 4 piece bath; mom had a concern he might tell the techs to do something crazy, so she had me stay.
A smoke detector went off while they were soldering (they yelled down from the loft to let me know). About 40 seconds into the alarm, dad asked me what the noise was. I told him. He sat there for almost a minute, stood up, announced that he had to find my mother and wandered away from any egress in their house. He didn't call 911 or show any real sense of urgency. We never left him alone again.
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Working I had to find solutions very early. I think my partner is able to stay alone 2 hours and I don’t have the choice because I don’t always have solutions. I already have a caregiver 13 hours per week + 3 days at the adult daycare. He has to stay alone more than one hour after the daycare, every morning when I go out for my sport hour and when I have to do some errands. He is very apathetic, it helps.
A paid caregiver could be a good idea, you wouldn’t depend on your friends constraints. It is important to continue to have moments for yourself and it will become more and more important. Most of people wait very long before hiring a caregiver or thinking to the adult daycare. I think that it can be easier to enter in this process before the crisis.
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Just agreeing with the others - it's time for 24 hour supervision. I remember getting there, but not really believing it. Thinking I could leave just for a few minutes. Nothing bad ever happened, but I came back to a super frustrated husband a few times. He was attempting to do things he had no right doing, but we were lucky and no major problems.
Good luck, I know how much getting out is important to our mental health.
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Thank you for all your responses. Your thoughts and suggestions are appreciated. Someone said - I think you already know what to do. I will begin contacting the local resources that includes a day care center. I like the idea of the day care center one or 2 days a week, giving me the time to be alone or with someone else. I will just need to assess if he is ready for it. Right now he has been very amenable to my requests. Actually, I am glad to be, as one of you said "on the police radar". We are in a small town, well trained police and if my LO wandered out even when I was home but maybe in the back yard for a minute, the police here would understand, treat him well. At this time, there is no wandering. I plan to contact the police office one day and talk in more detail. But as we all know, it keeps changing with each day, or moment.0
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This is such a difficult stage. I tried to be realistic about my DWs abilitied and limitations, but I overestimated several times her ability to be unsupervised. Once I was just in the back yard cutting up a tree that fell. I came in and my beloved had gotted out the iron skillet and carefully put 4 icecream sandwiches, still wrapped, into it to cook for lunch. The logic- "he is working so hard, I'll make us some sandwiches". Even in the beginning of stage 6 she was still thinking of me. Virtually no family support. My sister could be used in a pinch but she drove my DW crazy even before the dementia. One daughter would come out 2-3 hours once a week to help her mom shower while I ran to the laundromat to wash bedding that was too heavy for me to do at home. I canceled a lot of doctor appointments and needed tests for a couple of years until her behaviors and delusions became too much for even me to manage. I guess I'm saying, you are at the point where you shouldn't leave your spouse alone except for a 5 minute run to the nearest gas station to pick up a loaf of bread. Even when I was just going out to mow the yard I'd shut off the power to the stove. Now is defininately the time to start working on resources to help you manage his care and looking for a care facility that would meet your expectations when that is no longer possible in your home. That takes months of research and phone calls. PLEASE talk to an elder care lawyer. I did that too late to help much, but with another year to plan I could have sheltered thousands of dollars that I had to liquidate that we planned to use for expences down the road. There may be ways to protect your assets when the time comes that you need Medicaid. Few people know this outside of having needed it, but the government owns your house once you are no longer using it, half your financial assets must be spent first before any help from Medicaid The application process is astonishingly cumberson. Sheltering your assets and getting both a Durable POA and a Health Care POA is something you should have in place a year ago- you'll need it. May God guide and bless you in this time. It is often a lonely vigil we caregivers walk.0
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Earlier in the journey, the neurologist provided me with the following guidance: If DH can recognize an emergency and has the ability to effectively call for help he can be left alone. I left him home alone while I was still working. He wore a watch with a GPS locator that I monitored throughout the day.
As DH progressed, I could leave him for no more than 1.25 hours. Anything longer and he would be extremely agitated,
There were many mishaps over time that were red flags that he should NOT be left alone. For example, leaving the refrigerator WIDE open. DH can no longer operate a phone and he does not know our address although we have lived in this house a year now. He cannot effectively call for help. And I am not sure he would recognize an emergency if one occurred.
When DH was in the hospital in May of this year, they stated DH needed 24/7 supervision. Now I do NOT leave DH home alone. He must have someone with him at all times. I am on the police radar and they are aware of his Alzheimer's. I have a caregiver come in 4 hours, one day a week so I can shop and run errands.
DH wears a personal alarm pendant and a medical id bracelet. I also wear a medical id bracelet indicating that I am a caregiver so that emergency personnel are aware of my responsibility to my husband.
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What would your husband do if:
He cut himself badly.
He set something on fire.
He had a heart attack.
He fell and couldn't get up.
I guess he could call 911 at this point. But for how much longer?
ElaineD
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There were also times when I was home, but not capable of caring for DH. For example when I was sick. I had to call my sister to help us because I could not prepare meals or go and get medicine. That was a real eye opener.
My husband has declined significantly since that time I was sick and requires even more hands on care because he is now incontinent.
I am grateful I have engaged with a home health agency that I can call on if we find ourselves in that pickle again.
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Reading your answers, I shouldn’t let my partner alone.
I do it to
- do sport every morning. I try to ge out early before he gets up
- do some errands
- after the daycare, I am still at work.
It’s 1 hour or a little more.
He is unable to call emergency. Unable to use the phone.
But he is also spending his time doing nothing (apathy). I wondered how he could hurt himself… not sure he would find a knife and even have the idea to search one. When I am not there he goes from the window to the sofa or from the sofa to the bed. The main risk is the mess in the toilets… but even when I am at home there is still this risk. This morning I was still sleeping when I hear the flushing… 10 minutes to wake up… too late. He has tried to clean, had let his dirty pajama somewhere upstairs and was wandering naked with some small residues of poo falling everywhere. Hopefully l the children were still sleeping.
I can’t imagine I will be bounded at home. Ans I also cannot imagine having always a caregiver at home. I will continue to take this risk till the MC. Will see if there will be other red flag than poo.
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My husband likes to walk and he was always fine until he wasn’t. He got lost on his routine walk twice so that ended his walks alone. I realized I can’t leave him alone because he would simply go for a walk alone. He also wouldn’t think to call 911 if there was any trouble. Sometimes he knows how to use his phone and other times he doesn’t. He doesn’t always know who I am. I decided to get a caregiver but I wanted one who could walk 2-5 miles with him. I advertised on a Facebook job page and found two ladies to cover three 4 hour sessions a week. They walk with him and make his lunch and try to engage him in talking. I run errands or walk and listen to my books or meet friends. I still take him grocery shopping with me because I think it is good for him to get out among other people. He is starting to make lots of comments to people who don’t always want to be bothered. I would not be comfortable leaving him alone at all.0
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The end for leaving my DW alone also came with a call from the police.
I had left my DW sitting at our kitchen table while I went to an early morning meeting. On my way back, I got a call from our local police department. They were at my neighbor’s house….as was my DW and our dog. Not sure if it was a dream from which she’d awoken, or a hallucination, but the story my DW told was that men had broken into the house and kidnapped me. She leashed up the dog (didn’t know she could do that!) and fled up the hill.
The police were very kind and understanding. So was my neighbor.
And that was the last time I left my DW alone. Nowadays, the only time my DW is a flight risk is if she wakes and rises before I do (mercifully a very rare event) and, finding herself alone and becoming anxious, opens the door and starts looking outside for me. Even indoors, if we are not in the same room, she’ll become anxious pretty soon.
This is one of the (many) large losses on the AD journey.0 -
To Markus8174
Thanks for the informative response. Fortunately, we have several of those items you mentioned already done. FYI - Medicaid is different in each state - not saying it is easier or more difficult here, but each state has its own rules. And unfortunately, does not provide what many people expect it to provide. So yes, it behooves anyone to look into it early. I am thinking of going back to our attorney to discuss the current situation.
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DorisEmma—You are very wise to review options with your attorney ASAP, and hopefully he’s a Certified Elder Law Attorney (or can reach out to one) well versed in how to set up or revise your existing revocable trust to cover all contingencies, including how your DH’s care will be covered if he outlives you.All estate attorneys are NOT equally prepared to set up trusts to protect assets (or spell out clear provisions) for spouses of loved ones with AD. I am not a lawyer—just VERY appreciative that experienced posters here knew about the benefits of seeing an elder law attorney to review my existing medical/legal documents which were woefully inadequate in providing clarity on my wishes for DW’s care if she is the “surviving spouse.” The mechanism regarding how her care should be funded/provided was unclear, among other things. The CELA walked me through all sorts of scenarios and contingencies from years of working with couples in my situation. The money for our sessions was well spent, especially for peace of mind.A “decent” room/studio in a Memory Care facility can cost anywhere from $8-10,000 or more per month, and the waiting lists are long in some regions. As you probably know, custodial care is NOT covered by Medicare and unfortunately, not all facilities take Medicaid payments. The search for suitable accommodations staffed by compassionate aides can be daunting. Some folks have no idea about Medicare’s non-coverage for Memory Care room/board/assistance. Anyway, congrats to you for recognizing DH’s gradually mounting care needs and for looking into ways his housing needs could be covered if you are no longer in the picture.
Wishing you well in this challenging new stage of caregiving. This site has many kind, experienced folks willing to guide you, so you are in good and caring company. —John
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I was so happy that I could run to the store, go to a gym class or out for a lunch with friend while my husband was at home. I guess I didn’t realize that after a year long pandemic, he wasn’t the same. I went to the gym and was home in an hour. When I got there, I noticed he had fed our dog coffee beans. The puppy is large 65 lbs but it was a medical emergency. He needed to go to the vet to have his stomach emptied to the tune of $425. I’m now in the process of looking for care. I came to the realization that I’d been playing with fire. As you all know, one day he/she would never turn on the stove etc and the next day it happens We can’t predict from one hour to the next.0
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IrishPat it is such a huge change when you can’t run out for even an hour. It made me feel like a prisoner in my own home. If I go for a walk with my husband then make him a big lunch I could run to the store while he is eating but that is about it. The companions I hired make a big difference in my attitude. My husband thinks they are in a training program and being paid by the state so he is happy to stay home with them while I go out.0
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Has anyone had a concern regarding your LO being able to judge temperature? With the house warm, plenty of clothing and blankets my LO complained of being cold this morning around 5 pm. I did numerous things to warm him. His body felt comfortably warm to me, not hot. He was not feverish. After a while, I suggested we get up and I made sure he was dressed extra warm. Now a few hours later it is still in the 20's here and he is outside cleaning the windows. He went out without a hat and only a light wool shirt. At my insistence he came in, was unhappy, so now with my suggestion he is out again with a large coat and hat cleaning the windows. He will be OK there for a while. I just need to make sure it is not too long and he keeps the clothing on. Just curious if ability to judge temperature is something any of you have experienced.0
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wow if the deciding factor was whether I could leave her alone with a 5 yo, Then it's time.
So far I leave her alone in the morning while I go to the park to walk for about an hour and once a week when I go grocery shopping. She mostly knows how to use her phone but not sure if she would think to call 911. Once I asked her if something happened to me, would she know what to do. She said she would call our son. Not as good as calling 911 but I guess it would work
When I'm out to walk, I almost always get back before she gets up, so I hope that's ok. When I go to the grocery store, I make sure her phone is beside her.
With so many ups and downs its hard to know the right time.
I really like this topic, would love to hear more responses from others
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This is such an important topic. I have read many times, that if you are asking it is already likely past time. It is like the childproofing really. Why wait for the first time? Could be disastrous.
In our case, upon diagnosis (late stage 3/early stage 4) I was told in no uncertain terms: you now have to "Watch Him". I took it seriously and only left him with an adult stepson who unfortunately paid very little attention.
So...I finally stopped doing even that. If he won't go with me, I can't go. But before that we had many signs he was not to be left to his own devices, even with me in the same house. He has been "line-of-sight" supervision for a long time (stage 4, now in 6d). Why?
- wandering. DH will walk out at the drop of a hat. Dressed properly or not.
- if he could find a dollar or two, he'd be on a local bus to who knows where.
- regular dishwashing liquid in the dishwasher (think I Love Lucy. Funny except the tile damage was costly).
- ever notice how the cortisone cream tube looks almost exactly like the toothpaste?
- more plumbing tears and cost for me: he's overflowed sinks and tubs repeatedly
- poured and was about to guzzle a BIG mug of blue "juice". (Mouthwash). Could have been a chemical like those pretty cleaning liquids though.
- before I disappeared all the knives, he's tried to open bottles with knives
- cut himself (see above), and just stood there looking at it.
- burned a BIG hole straight through a microwave-safe plate (using the microwave). House reeked of smoke. I still don't know how he did that.
- oven burner left on briefly & walked away. I heard the clicking thankfully. He ignored it.
- there's more. I don't even remember all the shenanigans, but truly scary.
You get the idea. Our palliative care nurse practitioner describes DH as restless and impulsive. Given that his mind is unreliable but he is still physically fit, that is a recipe for disaster. Check out the comparative age for the various stages. Would we leave a 6-7 year old alone?0 -
DorisEmma, this fall my DH was complaining of shivering in the early morning hours. But this was taken care of with an extra throw put over him. And I now set the thermostat one degree higher at night. So not quite the same as what you are seeing. My DH is often cold, has been that way all his life. Just a suggestion - you might want to create a new thread with this question so it doesn’t get lost in the original thread.0
Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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