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.
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.
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.
"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.
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."
Regarding living, I would suggest that you visit places in their city and have her on a list for placement (the one you feel the best about). When they call with an opening, you simply say, we are not ready, but keep us on the list. It might even be good to be on 2 or 3 lists. If you do this, you have made the best decision for them in this situation. If not, it will be a crisis and a "crisis driven decision", which very often would be made by someone else or simply the first place that has an opening. The greatest gift you can give them is to have that Plan B, but hopefully never have to use it.
I would assume he had a stroke, and the stress of a parent is hard enough for us, imagine doing it at that age. Good luck,