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My husband is wheelchair bound and has a dementia. He is 82. I am a healthy 80 year old and his only caregiver. I alone, is responsible for all his needs including medications and meals, etc. I often wonder, what happens if I should have a seizure or any kind of fall which renders me unconscious ( God Forbid) This is always on my mind. I know I should keep a telephone near him at all times but I worry that he may forget to dial 911... This is always on my mind. I hope this never happens but I worry. Any suggestions ?

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Neither my dad or mom called 911 for a broken hip.  See if you can get seniors for seniors to set up a system to call you once a day or if you have a teenager living near by, get them to drop in daily,  just to do a health check.  Having someone know your routine is a must.  You think you can do it all yourself - but you can't.
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All of the household medical records should be kept on the frig in a magnet. My mother had this, e.g. meds, dr. phone #s and ALL allergies.
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You should reach out now to either care companies, perhaps use them for a break (respite) or nursing students, or see if you can post help wanted thru local Center on Aging. Be aware that RN students can not do nursing tasks till they graduate or they put their career in jeopardy.

Medical Alert Systems is one company that has an alert pendant with an automatic fall detector. It will not always pick up a fall if you are able to break your fall or go down slow. It will pick up a hard fall. It doesn't require a landline! Has better signal reception than most phone..in my area. The fob works within 300 feet, and there is a second palm size unit that goes in you pocket, purse, or in belt clip case for when you are away from the house. It has a GPS locator that will know your location within 300ft.

You are so wise to prepare ahead. I had a neighbor who took a fall gathering things for a trip to Europe. Her daughter called daily to check in, but at first was not alarmed because she knew her mom was busy with last minute preparations for the trip. So it was day 3 when they called police for a wellness check. She had died from complications of that fall. I fall alert would have saved her life.

The unexpected is just that..unexpected. Planning ahead, just in case, with a plan B & C is important and can give you great peace of mind at any age.

Heck, I had to go to plan C when I went into labor with my second son. Good thing I had not counted on figuring something out when it happened.

May God Bess you and keep you both safe.
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Idea... TAPE MEDICAL RECORDS TO DOOR... This thread reminded me of a tip from a paramedic who came when my mom had a fall. As I was rifling through a binder of medical records to answer questions about her, he said I should tape the information to the back of the entrance door. I use MedicAlert.org for both of us, which provides a printout of your medical history, medications, medical providers, and emergency contacts. So I put that printout along with an emergency checklist in a brightly colored enveloped and taped it to the door. My friend pointed out I should do it for myself, too. So we have two envelopes, with our names on them.

The emergency checklist includes items that might be forgotten in the flurry of activity... a reminder to notify my sister, book to read because the ER always means lots of waiting around, both of our purses, healthy snacks for myself, medical records binder, winter coat (forgot this for her once because they had her wrapped in blankets when leaving the house), change of clothes, phone, and phone charger.

The first time I used the information from the envelope, the paramedics were thrilled. They also told me I had plenty of time to gather my stuff on the list, as they had to do some "stuff" with Mom in the ambulance. It worked out super well. Some people keep a "go-bag" ready, but I prefer the checklist for now.

Mom also wears a medical alarm button (Help I've Fallen & Can't Get Up), which is a separate service from MedicAlert.org. There are many different services for the button with various monthly fees.

MedicAlert.org lets you wear an emblem with your account number and your major medical issue engraved on it. If you are unresponsive and medical responders call the number, they can get a complete medical history (that you have previously provided). I maintain the information for each of us online. They charge an annual fee, which I think is worth the peace of mind.
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GraceNBCC Aug 2019
Great information!
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First of all, you must immediately have in place any and all legal documents that you may need for yourself. Also, you must immediately figure out what you would do in terms of medical help, placement, caretakers, etc. You MUST DO THIS NOW and I mean now. Contact the professionals and prepare instructions and documents so someone can step in. You are wise to think of this but this should have been done the minute he became disabled. Do NOT wait. Also carry with you on your body details regarding this situation and advise everyone you can think of who might step in to at least make one emergency call to get the help process started. Second, consider having him placed. This burden is too much for someone at your age.
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I had a situation where I had a kidney stone attack, but I did not know what it was. I called an ambulance for myself, but did know what they would do for my handicapped Alzheimer’s Patient. They took me to the Hospital ER, and separately brought my Alzheimer’s patient to join me because he could not be alone and there was no one else to watch him. Later, we both went home together.
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Yes. Medical alert. Some of them detect falls. You need it for yourself.
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I would suggest that you get a Medical Alert system for yourself. That way you always have a way of getting help for yourself in an emergency. Some medical device companies can attach a message saying that your husband have dementia and can not be left alone so if 911 is called they will be made aware of his situation.
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Get an apple series 4 watch for yourself. It has fall detection on it. If you fall it will tap you on the wrist for 1 minute. If you don’t respond within 1 minute it calls 911 and gives your location and sends a text message to anyone programmed in. This may be something that would help you. It really works well. We got one for my mother. Even though she had CPI she had a stroke and passed out and couldn’t push her button. I don’t know long she was out. If she would have had that she would have gotten immediate response
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Although having a pendant might be useful, if you were to be indisposed you might not be able to press the button (the ones suggested for detecting falls might be better.) Relying on DH to call 911 might not be a good idea either - if you were in another room, he might not be aware and at some point he won't have the wherewithal to know to call.

After some recent non-injury falls in MC, they put a pendant on our mother so she can call for help. She has no idea what it is and often just pushes the button. In her case it just seems it would be a nuisance for them!

If you could enlist friends, neighbors or relatives to call at a certain time of day or you call them, just to check in, the worst case is he might be "alone" for a day. If there are no friends or relatives available to do this, then I would consider hiring an agency to do a minimum daily check (minimums vary - the place we initially hired would do 1 hour, some require more time, so check around.) Since you would be paying for this service, consider having them take care of some other tasks for you (again, what they might provide would vary, so think of what services might be beneficial, such as having them bathe him for you. It will help you, and reduce chances you might injure yourself!)

I would think that if emergency services came for you, they would realize he was not safe and would be transported somewhere - you could always contact the local emergency (FD, PD, dispatch?) and inquire about how to leave instructions with them to care for him if you were to have an emergency.
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Your purse and wallet should have a notification "Helpless husband, w/c bound and with dementia is in our home alone at (address). " When you are reached by EMS and Hospitalization this information will be given to social services who will pass it on. This information should be at your hospital, with your doctor, etc. Please do find someone to make a daily call to. This need not be a family member or friend; this can be a decent neighbor. If the call doesn't come on any given day they call for a wellness check. Those are three things I can think of offhand and I hope others have suggestions as well.
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Maime...
I hear your heart and I understand. I think you are overwhelmed, but also at a place, now, where you need more care than you recognize, perhaps, yourself and you may be feeling that. I think you would benefit from the comfort and security of a situation where you both can live and be independent, but within a facility where there is a staff that can check on you...and you have the freedom to come and go and have your car there...and you have a small kitchenette where u can have the option to cook or eat in an inhouse cafeteria on the premises. I use to think it terrrible for families to encourage their parents to give up their homes to live in such places, but I will be totally honest with you. Lately, that has changed. A dear couple i grew up knowing...is my reason for this insightful change of perspective. He has alzheimer and she cared for him and had people come in to the home through Home Instead to assist so she could get out and they did light house keeping and cooking. He passed eventually and the last two yrs she has been alone. It was fine, at first, because she was only 79 and frequently would go stay with her girls in Atlanta for visits at length...and when at home, she still had the Home Instead people, but her kids longer let her drive, so she gets a ride to church and the Home Instead people take her places. She has a schedule and a good life, but is beginning to get lonely. Being real, it is hard on her kid's hearts because she has early stages of dementia, but still able to be somewhat independant...but they call her constantly and have an app on their phones to keep up with her because she gets out and walks. What is hard on her kids is, they do not want to take her out of her home of 40 plus yrs too soon because they want to honor her dignity as she is a very independent soul and loves her home. They are now beginning to inch toward her living with them or a place like i described. They want to give her options and let her choose. But, I can tell u, being alone is getting old fast to her after 2 yrs and she is 81 now. She gets lonely because even with all the help in and out and her places she loves to go daily...there are still 24 long hours in a day. I think if it were me, I would move myself in a place like I described to you because i would want the security and comfort, but still have freedom. And, a place where as u change, it has different levels of care for me or my spouse. That is my insight to u and what i would do after reading your post and trying to put myself in your shoes. Be selective, but look around. There are some very nice places out there and some not so good...Pray and He will guide your steps.
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I guess that is why you should have one of those call buttons around your neck to alert someone that you have fallen. Also have someone check on you daily with a call, who can help you if you are not coherent and summon help. But then, what happens if you need to go to a hospital or can no longer give him care? That is the long term issue. You should give someone a health care POA who can act for you in terms of treatment if you are not able to. Also someone should have a health care POA for your husband and could arrange for either home health care or a rest home.
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Hello!!! This is an urgent issue! I'm wondering about this lady's judgement if she doesn't have something in place already. I'm wondering about her judgement if she believes it when her husband with dementia says he knows how to call 911. When is the last time you went to the doctor? When was your last cognitive evaluation? Do you have grown children? If so, there's a good chance they are responsible adults, but they like to believe you when you tell them you're "fine." You're not fine!! Call your grown children and ask for help! You need someone to come by every day, whether paid, family, friend, or volunteer.
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anonymous802234 Aug 2019
You need to back off & slow down!
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Reach out to your local government department of aging and ask for advice and help from professionals (a social worker or someone trained in senior issues). Assume that someone with dementia will not be able to call 911 and explain the situation.
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get some of kind of life alert button (with fall detection) FOR YOU. Then, if something happens to you and even if you can't respond, the button will alert someone to get help to you. You probably be able to let them know you have a husband that would need help/care too in case something happens to you.
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NancyInSc Aug 2019
If you go the life alert button route, make sure it works at your home! My Mom had a friend fall outside, breaking a leg, and it did not work. She did not break the alert button. It just did not pick up the signal in her area (small rural town) at the time. Since no one was around, she had to crawl to the house and up a few steps (now she has a ramp) into the house and pull the landline phone to the floor. If you do use a "button" make sure it works in several sections of your house and yard. We also cannot get dish TV in some or the areas of town.
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No Fear. The professionals who Care for You, No matter who is Involved, Will make sure your spouse is Cared for to, Perhaps put him in a Facility until you get out. Our Elderly are well Protected under Adult Protective Services, dear.
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So much good advice. I now keep the telephone near my husband (when I shower) He said he knows how to dial 911 in case I fall. I keep the doors open. I never had any seizure or fall but you never know at my age. It's a concern I have and thank all of you for the ideas to investigate. You are all so wonderful.
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You need a backup plan. Also you need respite. Can you Put him in ALF or SNF? Or home caregiver? Also the life alert pendant is a good idea. It also has auto fall detection. You can have your house key in lockbox attached to something like your gate..& they know already your address. & Medical history
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You need to call your County Office of Aging. They will be able to help you get the services you need. In my County there is an Emergency department that you can sign up a person that is vulnerable. With my husband its his deafness. This way when there is an emergency, they know to send someone to that residence.

Your concern is valid. I would hope that the EMTs see the situation and call the proper authorities. But it would be nice to have something in place.

Office of aging can help with a Medicaid application. It may be time to place ur DH in a NH. You will be considered the Community Spouse and be left enough money to live on. You will have ur house and a car.
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I will be following your post as I’m concerned with the same thing.
Not sure what state you’re in but mine makes too much for In Home Support Services, so I’m stuck too but definitely look into it. I’m so sad your golden years are being taken :( and yet your only concern is him, that’s very selfless. Please ask his Dr for referrals. Get a “needs assessment” as well.
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Happy, are you reaching the point where it may be better for your DH to be in a care facility?

You are a healthy 80 year old woman, but taking care of someone 24/7 will take a toll on you. That you are fixated on what happens if something happens to you, while you are in good health, I think it is a sign of burnout.

Do you have any reason to think you may have a seizure, fall or pass out? An underlying medical condition perhaps?

Others have suggested Alert systems, which work well for many people. Some people use informal phone trees. Friends call each other by noon each day. If they do not answer, they go to the next step. A great aunt, had her letter carrier ring her bell each day to hand her the mail. The one day she did not answer, he entered the house (he knew where the key was) and found her on the floor. She had fallen out of bed and her 'alert' was on the beside table.

A family friend needed hospitalization last year. He was his wife's caregiver. She was taken to the hospital for respite care as his situation was an emergency and other care was not available at the last minute. We are in Canada, so things are different here.
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IF you were to be taken away to the hospital and could not care for your husband, I wonder if the EMTs who come to get you would understand that he could not be left alone?

Is there something that can be set up in advance? Could he have some kind of a medical alert bracelet that says something like "dementia - do not leave alone"? And maybe have the name of a local nursing home noted somewhere with him (fanny pack?) and maybe have arrangements made with said local nursing home so that they already have his info, etc.?

Maybe having a plan would give you peace of mind?
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My sister-in-law used an alert pendent that called neighbors and family in a series until someone answered like the LogicMark Freedom Alert Emergency System ($242 on Amazon). The Freedom Alert uses your landline; it doesn't detect falls but it does call numbers in the order you choose until someone acknowledges the call. If it gets through your entire list and no one acknowledges the call, it can be set to keep calling the friends list or to call 911. You can use the pendent to talk with the person it calls (including 911 personal) and you can use it to answer normal phone calls if you like. Since Freedom Alert doesn't use a monitoring service, it has no monthly fee. You can purchase an extra pendent if you think your husband might push the button easier than work a phone.

Although there are paid services, our local sheriff's department recently implemented a program using it's dispatchers to call seniors once a day. My church has a program using the ladies circles to call once or twice a day.

There also a fall detecting system (SkyAngel911FD, $180 on Amazon) that works on cellular networks (but does not require a service plan so there's no monthly fee) where you press a button to call 911. Usually the built in GPS can tell emergency personal where you are but in some areas of low cell signal the GPS function doesn't always work. Because it's cellular based, it will work when you are away from home. With a monthly service plan, it can be setup to call a friends list too.
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Do you have an alert pendant yourself? That would probably work better than your husband trying to call for help, in the event of a fall.

If I can ask without being rude... are you likely to have a seizure or fall unconscious, particularly?

There probably are telecare services which ring in and check up on you every 24 hours, or something like that - they call, you answer or press a button, if they get no response they start the emergency contacts process, that kind of thing; but is that proportionate to how worried you are? It's sensible to plan, though, anyway; why not see what sort of services are available where you live.
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