Mom has Alzheimer's, Dad is her caregiver. I need an emergency plan if he's out of the picture.

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My 90 year old father is the primary caregiver for my 88 year old Mom with Alzheimer's. She's probably late moderate stage but is progress toward early late stage. I am 700 miles away(I do talk to them EVERY day, monitor mom's meds from here & am in touch with her doctor) & there are only a limited nr. of friends & family who could respond to the immediate needs of Mom's in emergency.
For example, if my father fell or passed out, I'd hope that Mom could dial 911. Let's say she did and the EMTs are there attending to him. I've been told that EMTs in general don't have the time to help someone like my mom.
- Mom needs to contact someone to come to her. Will she remember which number to dial? What if they aren't there? We're thinking of a 'emergency alert system' but Mom doesn't even wear the MedicAlert necklace I got her
- Let's say Mom gets someone to come to her, I think if I identify these people, I can make a checklist of who THEY should call. First problem is that the number of friends and relatives near them is very limited but I have a cousin who can take care of getting mom's meds to her; she couldn't do that by herself. This cousin, however, has her own 94 year old mother to take care of.
- I'm thinking that we need an in-home service to come in until my brother, husband and I could get there (or any combination). The agencies I called so far want a day or 2 notice. My father also won't agree to allow an agency to come in to do an assessment. I'm sure he's afraid that a professional will see what the situation is and will want to have her put on a nursing home.
- OK, let's say that I find an agency who would come wo. that much notice. Mom would need 24/7 care in that situation. I know that agency in-home care can cost as much as $20 an hour which is $480/day or $14,400 per month! My parents cannot afford that.
- I contacted an assisted living facility near them but they couldn't take her unless 1) they have a bed; 2) she has to be assessed by a doc and the facility within 72 hours of the admission.

I'll stop there. I do know that if Dad dies before Mom, Mom will have to go to a facility. If Dad is out of the house for more than a few weeks, she could go to respite care but I believe that she'd get so bad that she'd have to stay in a facility.

Can you brainstorm with me about each of these ideas? My parents funds are really limited as are the family/friends. I could get there in a day probably w. my husband. However, one of us would have to be at the hospital tending to my dad's needs.

BTW, the Dad is not cooperating with any planning I do. I finally figured out why. For one thing, he has never been one to plan. Life happens TO him. Also, he and his 9 brothers and sisters grew up on a farm with their grandparents, Mom and Dad. When they go sick and were dying, they just took care of everyone at home. He has no model for modern aging care. Plus, he has no experience with what options are out there and he gets VERY overwhelmed. I've forged ahead myself with planning since I'll be the one who would have to go in and pick up the pieces.
Thanks all for your help.


my mom is in the family waiver program she is 87 years old and gets care 7 days a week and 10 hours a day, you work with your local area agency on aging they asses her needs plus it also depends on the financial aspect of it, she then applies to the state welfare to apporve her for the program, this covers her medical, and toiletary needs: like diapers bed pads etc, her head nurse and aides make sure they keep a daily log and take her to her scheduled appointments with the doctors, which is good because she doesnt have no out of pocket expenses, this is to avoid putting her in a nursing home, so she can have care in the home. See if your dad also qualifies for this type of care, they might even pay for a round the clock nurse as well
2bluwings, it is wonderful that you are being proactive and thinking ahead about various contingencies. You are a loving and careful daughter. Gold stars to you!

It sounds like your mother would not be living in her own home now if she didn't have your father to look after her. But she does have him. That is a blessing and a gift and something to celebrate.

There are two things that can interfere with this situation.

1. Mother's disease can progress to the point where it is not possible for her to be cared for in a private home and definitely not in a private home without assistance. Unless some other end, such as a heart attack, occurs first, many (most?) dementia cases do reach a point where placement is in the best interests of all concerned.

2. Something could happen to Father, taking him out of the caregiving role either temporarily or permanently.

I know that you are currently concentrating on #2, but I wonder if handling #1 first might build a good foundation for any contingency.

This might take some convincing of Father, but you really are on his side. You want your parents to stay together for as long as humanly possible, till death parts them if that is possible. It is the nature of dementia to get progressively worse and harder to care for. This is not a failing of your father's or even about his age. (He needs to know that you understand that.) The absolute best way to ensure that Mother can stay with Father as long as possible is to bring in some outside help. Promise him that when an assessment is done if the first recommendation is placement you will fight for the second recommendation. Assure him that the goal is to keep them together and even if professionals think that is not the best choice, it is his choice and you will fight tooth and nail to advocate for his choice. Also point out that for an agency to provide some help to keep Mother at home is cheaper for them than placing her in a facility, if you think that will help convince him that they won't "take her away" from him as long as he is willing to have her at home.

What kind of help can be brought in now to assist with Mother's care, and be increased as she declines?

I'm sure that it is going to be a hard sell, but it sounds like you have great insight into your parents' life views and attitudes. I hope you can convince Father that you are working for what he wants and that together you need to figure out how he can continue to care for her in their home as long as possible. If there is some "outsider" whose opinion he respects, enlist them in helping you convince him. A doctor, a religous leader, a golfing buddy -- anybody he might consider "objective" could be a help.

If you have some care assistance in place, when an emergency happens it will be much easier for you to deal with -- you will have a case worker or an agency emergency number to contact.

Meanwhile, if you get an emergency notification about your father, tell the person notifying you about your mother. "Thank you for notifying me. I'll be there on the next flight out. My mother has Alzheimer's and has been living with my father. Can you tell me where she is right now?" If Father is taken to a hospital, ask to talk to the social worker immediately and let him or her know about the situation. They will know what emergency measures can be taken for Mother until you get there.

Your planning efforts are an act of love, and I wish you much success with them. Also know that as much as we care and plan, there are many things outside of our control. We know that our parents are going to die. We are less willing to accept that there will be pain and confusion and emotional discomfort for the spouse that experiences the other's death. We want to prevent that, and you are taking practical steps to minimize it. Good for you! Just try to avoid beating yourself up if things happen in a way you didn't anticipate. You are doing your best. You can feel good about that.

This may sound harsh, but maybe you should just let nature take it's course. I mean, they are 88 and 90! If you start 'taking over,' there's no turning back. Are you willing to change everything about your life right now to possible care for your parents yourself since funds are limited? Think of the bigger picture. Have they had a good life? Are they comfortable where they are? Maybe you shouldn't call everyday...Try every other day. Your list of options is long; but step back for a moment. ANY emergency will force the issue and take the situation out of your Dad's control anyway. Waiting for the other shoe to drop may be the most practical option right now. Best wishes, whatever you decide.
Wow I couldn't read your whole letter...relax. Maybe going to visit and staying with them for a week would give you a better idea of what the needs are. I recommend meditation for you...really start a practice twice a day. You can easily find video's on the internet. And you know taking care of you is the first step before helping your parents.
I took care of my mom for years so I know what it is to panic. I always felt better once I got there and got my feet grounded into the situation. I always made it worse inside of myself than it actually was. But on the other hand it's not easy. I would start with the local area agency on aging. I would look for people that can come in at $10 an hour under the table which makes it more like $13 plus. Maybe you dad would be able to hand a younger person just to come in and be with him and do things around the house. Who does the shopping and cooking? An assessment of their situation is really needed here. There are many ways of helping. So get your feet wet and keep all your options open. Look for the open doors! God Bless.
I am caring for my wife and have concerns about what would happen if I became incapacitated. My wife is almost totally incapacitated and could not contact anyone, or for that matter leave the house. Is there any type of service that would alert someone if I failed to "check in" each day?
I understand your situation. I was once in the same boat with my elderly grandparents in their 80's and 90's. My grandmother had both Alzheimer's and Parkinson's. I chose to move them in with us. I am a writer so I worked from home anyway and I was deeply concerned about them. It was easy to arrange help right where we were and there are adult day care centers for when you have to be away.There are services that will send help to your home and since my grandmother was on Medicare, they actually paid for a nurse's aide to come 5 days a week to help with bathing (my grandmother was finally bedridden in a hospital bed they also provided us with) and once a week a registered nurse was sent.
CandyCane57- That is one of the sickest suggestions I have read anywhere on any topic. Is that how YOU hope to be treated one day? Remember that those parents you would like to see abandoned once brought the questioner into the world and tended to her needs even when it stressed them emotionally and financially. Her parents are not dying. They are struggling. She can get financial help for their needs. You are suggesting she be a typical selfish American pig who just thinks of himself/herself. You are saying she should abandon them and walk off like it is nothing to her, to treat them like garbage. SHAME on you. I feel sorry for your parents. I feel sorry for any kids you have.
I disagree with trrimerritts because I don't want my children to have the responsibility and burden of looking after me during a long term terminal illness. I would consider myself selfish to think otherwise. Plenty of people I've known have passed on at an age much less than mine. I'm 82, and for me, quality of life is just as important as quantity. I'm not without health problems, but I enjoy every day the best I can. And when I can't, then so be it!X
Whoa! Take it easy on "CandyCane57"! It's folks like you, "terrimerritts" that like to heap on the guilt and make caring for aging parents even more stressful that it has to be.
"2bluwings" - Your father's health is almost certainly suffering by caring for your mother. If they would both make a move, your dad would absolutely have a higher quality of life and you wouldn't have to fear for your mother's well-being in the event of an emergency. That said, it sounds like your dad won't see the forest for the trees on this. That's not uncommon. I work for a senior community and when families call in telling stories almost identical to yours, we sadly mark their file "waiting for a crisis".
So, the unfortunate reality might be that your dad won't do what's best for him - you probably frustrated him in that way when you were a teen : ) I advise adult children to pull out all the stops in convincing a recalcitrant parent in this situation, but it's rare that they do.
You need to get to some kind of peace about the situation. Your dad is calling the shots and if you don't think you can overrule him, the 'plan' he has will have certain consequences. You'll just have to trust that the neighbors, first responders, social workers, etc. who will get to your parents first in an emergency, will be kind and do their best, because the overwhelming majority of people do. It's not likely that your mom will be left confused in the middle of her living room as the ambulance pulls away. The first responders will call the police or social services. If you can convince him to do it, have your dad post detailed instructions on the fridge and a small note on the front door directing first responders to look there.
terrimerritts, did you actually read both the original post and CandyKane57's response carefully? Or do you just look for an opportunity to jump in with insensitive bigotry about "typical selfish American pigs"?

Did you by any chance happen to notice that 2bluwings's dad is not cooperating with planning for the future? You moved your grandparents in with you. Take another star for your halo. But that hardly makes it the best solution in every situation. Dad does not want to have help brought in. He does not want to move out of the home he shares with his disabled wife. Dragging them kicking and screaming 700 miles across country might not be the ideal solution in this case. All 2bluwings is asking for is some brainstorming about EMERGENCY situations that will come up in the future. You've stated your advice (move them in with you) and others have the right to express their advice without encountering name-calling.

2bluwings is trying to make plans for a crisis situation, since she lives far from her parents. CandyKane57 suggested she may have to let nature take its course when the crisis happens (and one inevitably will). This is pretty much what IsntEasy describes as a reality with the "waiting for crisis" notation on a folder. It is what I had in mind when I said, "avoid beating yourself up if things happen in a way you didn't anticipate." If that makes any of us pigs, then all I can say is "oink, oink."

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