What happens to Alzheimer's LO if the sole caregiver needs ambulance?

Runabout

I am the sole caregiver for my moderate Alzheimer's LO.

If I needed to call 911 for an ambulance for myself in a medical emergency, what would happen with her? 

She cannot be left alone. She no longer understands why the front door won't just open when we get back from a drive, she doesn't know what the smoke detector or emergency siren is. If I am out of her sight for more than a few minutes she starts looking for me including going outside.

What would happen when we got to the ER? 

What if i were unable to talk to her while in the ambulance or er?

I am assuming paramedic would transport her in ambulance with us? 

Many thanks

ButterflyWings

Runabout- welcome to our club that no one really wants to join.  The reason we qualify, a LO with dementia, is heartbreaking and hard. But the journey is more manageable with the help of fellow caregivers here. 

 You raise an important question, and I think COVID 19 adds a new wrinkle to the mix. We have had 4-5 “911” ambulance trips in the last 2 years (two different loved ones) and the paramedics’ protocol seems to have changed. I used to always ride-along, in the back or the passengers’ seat. 

But starting mid-2021 I was told it is not allowed for insurance liability reasons (same ambulance company).

Regardless, your point is well taken: DH could not be left alone at home nor at the hospital— and whatever story he might concoct, would have no connection to reality. Plus he is a wanderer so it would really be a dangerous situation without 24/7 line of sight supervision for him. Yikes! He is currently on hospice so I would alert them ASAP and it is possible they’d send a nurse or volunteer for a wellness check but you are so right that more would be needed. I wonder what others have done?

You make me think about maybe getting him a medic ID bracelet so they might realize he is impaired. Also, I think I read something here about instructions on file with local police indicating one’s home has a PWD who cannot be left alone. Or maybe the instructions are somehow on the caregivers’ bracelet. Less likely to be removed or tossed. (My DH has never worn jewelry).

Not sure how I feel about all this, other than vulnerable.  We were in the ER twice in Oct and they ignored me completely- kept us separated for TWO HOURS on arrival the last time, with no ability for a rational intake convo from DH. I had to escalate via phone for an outside agency to alert the ombudsman that we had a “situation” brewing (me) and an advocate that wouldn’t hesitate to go to the media should something happen. But once something happens, it’s too late right? More than anything they were a understaffed and overwhelmed. And that was pre-omicron surge. They would not have given him the time of day had I been the patient — and to your point, that could be disastrous.

Our forum member Michael has been doing some policy work including ER related assessments recently. He may have some info, and others will chime in soon. Welcome once again. The best to you and yours. 

DHVT

The situation I think about is my being so suddenly incapacitated (heart attack, broken hip, stroke, etc.) that I can’t make a call, and my wife being unable to use a phone or help me.

harshedbuzz

DHVT wrote:

The situation I think about is my being so suddenly incapacitated (heart attack, broken hip, stroke, etc.) that I can’t make a call, and my wife being unable to use a phone or help me.

It doesn't have to be sudden. My mom developed an autoimmune liver disorder while they were snowbirding in FL before dad was officially diagnosed. I was certain dad had some form of dementia, but mom was in denial and fighting me on getting an evaluation. I called at least every other day to check in and mostly got my dad who complained about my mom being lazy because she wouldn't cook for him, about them getting a divorce, about a dinner dance they attended and that they'd been to the doctor who said mom needed a psychiatrist. She was severely jaundiced and the color of a school bus which he failed to notice. The doctor had actually sent them to the ER wanted to go home so he didn't. It wasn't until an RN friend saw her wandering around Publix that she got the medical help she needed. The hospitalist worked PT at the practice that sent her to the ER a few days prior realized dad was whack and called me to be her advocate. I was fortunate mom had listed me as an emergency contact.

HB

Runabout-

That's a good question for your Area Agency on Aging. I have a dear friend who helps out a pair of elderly brothers. The 82 year old has serious cardiac and mobility issues while the younger has serious mental health issues. Older brother refuses to discuss a scenario in which he can't care for his brother, so my friend reached out for answers. If the older one has to go into care or dies, the younger will be placed in an adult foster care until a group home is found for him.

M1

Welcome Runabout, youve raised a really thoughtful question. There are two aspects: the LO inability to aid the caregiver, and the need for supervision/care substitute for however long the emergency lasts. I think we all need some backup plan, but it is indeed tenuous for those of us who are operating without family backup.

I've written a blurb on my partners care needs -(things like meds and where they are, all emergency phone numbers, food preferences, current capabilities) and sent it to my daughter, her sister, and local friend who is her backup medical poa. Ive always thought that I would call the local friend jn an emergency, but a professional care manager would need to step in quickly.

I am fortunate that at the moment my partner can still use the telephone, but I dont know how long that will last. If I were unconscious there's no telling.

We are all vulnerable for sure. And the bottom line with this pandemic is that there continue to be preventable deaths, from covid and other causes that will go untreated.

Thanks runabout, very important issue.

Mint

Harshedbuzz

Where would you look into adult foster homes?  Area agency on aging?  

Cynbar

Caregivers of a late stage dementia patient should write up a note and attach it to the front of your refrigerator, usually in an envelope labeled In Case of Emergency. This is the universal spot that EMTs go to for direction, and also where a copy of a DNR should be. The note should clearly state your LO's diagnosis and that they cannot be left alone. It should also include the name and phone number of someone to call. If the contact person isn't very close by, the EMTs will take your LO off to the ER with you, where the social worker will sort it out. But it ensures that the EMTs won't just whisk the caregiver away and leave the dementia patient home alone.

As mentioned above, you should have a plan in place in case your LO suddenly needs care. One of the best recommendations here is that we all should get our legal affairs in order, including a power of attorney who would have access to funds if needed. Speak with that person in advance, make sure they are knowledgeable about your finances and a potential plan for care.

I also worry that my DH couldn't use the phone in an emergency. I have thought of getting an Apple Watch, which I understand can call for help if needed, but haven't done that yet. In the interim, I have a friend who lives alone, and we check in via text each morning. I too have wondered how long it would be before others noticed there was a problem --- it's a scary thought when you might as well be living alone.

harshedbuzz

Sayra-

My friend who was looking for a Plan B for the elderly brothers contacted a social worker who works for a homeless outreach program in the large city in which she lives. She works for a nonprofit serving those experiencing homelessness, so she has an in. I would expect a county APS office could help you find appropriate resources in your community. She has no legal standing in their cases but wants to make sure neither falls through the cracks in an emergency. 

I have another friend whose adult son is in an adult foster home. Her son is on spectrum and while very bright is crippled by OCD and mood disorders (he cannot take the usual class of meds to control them because of life threatening side effects)- plus he was diagnosed with T1D in his late teens and is not adjusting well to the lifestyle changes that requires. She saw an attorney about conservatorship for him with a 3rd party making decisions and as his representative payee. Given some of their history and for a lot of other reasons, it's best she is not "in charge" of his care. He's living in an adult foster home with 3-4 other medically fragile adults and run by an RN. He is free to come and go and is currently working with a job coach at a major retailer of electronics. I recall she started this journey by contacting an attorney who specializes in Special Needs Law.

HB

Unknown By Man

Runabout wrote:

I am the sole caregiver for my moderate Alzheimer's LO.

If I needed to call 911 for an ambulance for myself in a medical emergency, what would happen with her? 

She cannot be left alone. She no longer understands why the front door won't just open when we get back from a drive, she doesn't know what the smoke detector or emergency siren is. If I am out of her sight for more than a few minutes she starts looking for me including going outside.

What would happen when we got to the ER? 

What if i were unable to talk to her while in the ambulance or er?

I am assuming paramedic would transport her in ambulance with us? 

Many thanks

This happened twice with my mother. Once With my dad and once with myself. Your millage mat vary based on the state and hospital. This was also during covid. 

For my father, the EMT took both and let my mother stay by his side, my father always had a travelers pouch on him with his ID, list of medications, list of medical issues, emergency contents, name of doctors, and the same for my mom. At the time they took my mom and she was by his side when she got difficult and started to disturbing others what they did was provide my father a one-to-one mainly for my mother, and all was well until I was able to get to the ER I was out of state at the time when I was called. So had to rush to the airport and take the next flight..

Thanks for life alert. 

Now when it happened to me it was slightly different, they would not let me mother with me due to covid protocol. Though my mother was fighting tooth and nail, nevertheless I had to go cause I was having a flare up. MS blows had it since I was a kid. So what had to be done since I had no one to care for my mom while I was in the ER, and would be admitted for 3 days for treatment. They gave me the option of admitting her along side myself for altered memory status. So blessing and curse for those three days I did have my mother by my side. 

Your mile may vary based off the hospital, insurance, condition etc . . . In our case we had fairly robust insurance so in each case we were able to get our requests accommodated cause it would get paid for in the end. In the case of my day he was able to get a private room with a one-to-one. 

In my case I was able to get them to play around with the rules enough to allow my mother and I to be in the same room together. We were unable to do the method my father used since my case happened towards the higher end of hospitalizations of covid so staff and rooms were limited, the private floors were mainly being used for covid patients at the time.

loveskitties

Your question brings up 2 issues...one, how to get an ambulance if you need one and LO can't do ti, and two what happens to LO when you are taken to ER.

As to question 1:  There are quite a few life alert type devices on the market.  None are very "fashionable" but do get you aid when needed.  Most have a number of options which will require you to assess what you think you might need (in home only, on-the-go, etc).  The primary function that you should have is fall alert, which for most devices is an upgrade or extra.  Basically if it detects a fall it will try to reach you, if no response, will summon aid.  There is also the more recent I-watch.  The most important thing about whatever device you choose, is that you wear it always.  It does no good otherwise.

The second question will depend on the area where you live.  I would suggest you call your local ambulance service (whichever one you would have alert device call) and ask them about your situation.  In my parents area, they have a database of "specials" which indicates conditions to be found in the home (multiple elderly, handicapped, etc) which gives them a heads-up on what conditions exist which influences their number of responders.

In some areas, you might find that the police will also respond and make sure that LO is cared for until some agency can step in to the emergency.

You need to reach out to your local services.  You might be surprised at how well they can help you with this need.

MN Chickadee

You've received some good suggestions. I would add technology has come a long way in the last few years.  An apple watch has a function to detect a hard fall and you can set it to automatically alert the authorities if you don't move within so much time. A life alert pendant you wear in the home (service you pay for where if you push the button they will call you and if you don't answer call the paramedic.) An Amazon Echo (Alexa) can be set up to place a call to 911 with a simple voice command. I would also post something just inside your main door where a paramedic would enter. A simple sign saying a person with dementia lives here, look on the fridge or wherever for information in an emergency. If you have a friend or relative who can be an emergency contact who could come get her or stay with her that would probably be preferable to having her in the ambulance or ER with you for a variety of reasons. Also if you have neighbors clue them in, give them emergency contact info since they would likely see an ambulance and be able to come speak to the paramedics. They may be able to stay with your LO until the designated friend or relative can get there. Whatever plan you are able to put into place is better than none, hopefully enough to avert catastrophe. This very thing is also why I had my LO on waiting lists at memory care facilities long before we needed them, I was worried what we would do if something happened to the primary caregiver suddenly. Having options in a crisis is important and takes planning ahead.

mommyandme (m&m)

Interesting post… thanks.

I’ve often thought what would happen to mom if I became incapacitated.

Besides the written note on the fridge being a great plan, I am glad we’ve got cameras in place for this too.  My brother, in another state, and my husband have access to the cameras to check in on mommy and me. (Of course it helps with oversight of caregivers also) If mom was still in bed or left in her recliner at unusual times or for unusual durations they would get into action to find out what was wrong.  Or if they couldn’t find her, meaning she’s in the bathroom or who knows, that would also alert them. Maybe they could even see me lying on the floor somewhere.  I don’t have a camera where I sleep so if I was in there they wouldn’t see me, they’d have to rely on moms placement. If someone tried to call me and I didn’t answer readily, they’d know there was an issue.  

When my mom was still in AZ, in between her daily caregiver shifts, I couldn’t find her anywhere on the cameras. I could often locate her when I found her cat. Her kitty was always following her.  Again no cameras in the bathroom but I studied the camera in the room adjacent to the bathroom where the kitty pointed me and heard my mom in the bathroom struggling.  I was able to call a neighbor that had a key, went in, found her on the floor but all was well, phew. We placed the cameras in her house when her neurologist said she needed 24/7 supervision.  That was our quickest option to get her supervised all day everyday, since we were out of state. Needless to say human supervision 24/7 was incorporated soon thereafter. 

Nevertheless, I’ve thought about this scenario and it’s one more reason the cameras add peace to my life. 

Hope this day is a good one for y’all.

JJAz

Wear a medical alert bracelet that states that your spouse is unable to care for herself.