First step is to contact an elder atty. and get POA, health care surrogacy, SS POA (they won't talk to you without their own dear little form). Anything you can get signed now will make your life easier.
Kycaregiver, my husband is not near the stage yours seems to be. However, for the financial and nursing home questions - and other questions you might have, I used the website elderlawanswers.com
They have questions and answers, you can ask a question, or read through the questions and you may find your answer. They also have a list of elder law attorneys in KY. I got connected through them to a medicaid consultant out of Louisville and had a consultation with him over the phone (he charges for the phone consult). It's a very good site for information.
You will find this site to be especially helpful to you also. Everyone here is willing to share their trials, tribulations, hugs and crying towels. Keep coming back - we'll be here for you.
Re: Finances - log onto the home page - www.thealzheimerspouse.com - and look on the left side. Scroll down to 'FINANCIAL ADVICE' and click on it. There is helpful information and links in that section. Also on the left side, scroll down for "Elder Care Locator", and click on it to find services in your area.
Others will be along soon to give you descriptions of their day, but for now, you may want to check out this discussion - http://thealzheimerspouse.com/vanillaforum/comments.php?DiscussionID=1072&page=1#Item_17 If copying and pasting does not work, go to the top of this page, click on 'search', and type in 'Just an ordinary day', making sure the 'topic' circle is filled in, then hit 'search'. That thread will give you an idea of some typical days around here.
My DH's day (a good day) is when he does everything in his routine at the same time in the same way. If he can't do everything the same way at the same time his confusion and irritability gets worse in relation to how far off his routine is. When I say routine I mean like...brush his teeth the same way at the same time. His coffee and muffin at the same time, his nap at the same time, watch the same program on tv at the same time. You can visibly see the difference in him if it doesn't happen. I have to watch him very closely when he eats lunch because I never know when he is going to choke on his food. He could go weeks with no problem at all and then all of a sudden start choking every meal for a while. On a bad day, when he can't have his rigid routine. He will be very confused and figidy and irritable and when that happens he wants to wander off and doesn't always know where he is. That is also when he has really strange dreams. The day before my surgeory he thought he heard me crying so he got up in the middle of the night and looked at me and I hadn't been crying. That's also when he has a change of personality and gets agitated. So the best thing to do is to try to keep their life as simple and uncomplicated as possible.
My DH is in late stage 6. He is usually up wandering during the night, rearranging pictures, pillows, whatever. I help him get his clothes on and after he shaves I finish for him. He will wipe out every drop of water from the sink after he brushes his teeth and picks lint off of everything. He will brush the tassels on the rug so that they are all even even if it means we are late to an appointment. He eats well but will not pick up any food. He uses a spoon for almost everything. He "reads" the paper (which is great because it means he is in one place for a couple of hours) and then he starts "cleaning". That is his major OCD. Washed the dishes with a spatula yesterday....no soap. I have to sneak them back out of the cupboard and put them in the dishwasher. Sweeps everything outside including the grass and now all the salt that we pay to have put on the driveway so that we don't fall. Acts like he knows people even though he doesn't have a clue as to who they are. Fearful as to how he will handle our children and their families at Christmas because I am sure he will not remember them but will fake it well.
My DH is somewhere near stage 6. He sleeps well. He stopped making his own breakfast and now waits for me to make it. He has coffee, english muffin and orange juice everyday. He "reads" the paper very slowly. Sometimes, I don't get to read the front section. He goes to a senior program 2 mornings a week. He enjoys this. On the other days he sits in his chair and watches CNN and CNBC. And he naps. He is obsessed with getting the mail. He will go repeatedly to the mailbox until it is there. Yesterday, when I came home from the grocery store he was on the front porch with hat and coat on waiting for the mail. It was cold out. He wears the same jeans every day and has started rolling them up. When we go anywhere I put the proper clothes out for him. Last night at 11:30 he showed me a dime, said it was very old and unusual. I looked, it was a 1992 dime. He rummages in drawers and finds treasures. He talks about travel. We gave that up last year because he gets very disoriented and agitated in situations that are unfamiliar. He recently asked me what our son's wife's name is. He covers very well in social settings, but will have no memory of them.
Socks and clothes pulled out onto the bed and floor and some tucked into the sheets Toothpaste for everyone! Some for the mirror, some for the door, some for the floor. Never, never put the used toilet paper into the toilet. Hide it. Ninety percent of what's said is out to lunch, five percent makes sense, five percent is actually in context Ninety percent of the time can't put an outdoor shoe on, seventy percent of the time has no concept of her foot Says "Yah", "Good", and "Great" to everything like a fear chant. "Lift your foot" "Yah" "No your foot" "Good" "No lift your foot" "Great" Rolls up tissues and toilet paper into little tattered balls nervously. Will fixate on something like wanting another tissue in the middle of dinner even though she had 5 already. Can't eat food normally regularly. Might. Might not. Might mangle the hamburger might not. Might pick up the fork normally. Might not. Dresses herself if left alone long enough. Pants might be on backwards, top inside out, pajamas might be under the sweatshirt. Socks will definitely not match. Limited sense of hygiene. Goes to the bathroom and asks to go. But never mentions a shower and gets toothpaste everywhere but into her mouth. Almost never has a clue what she's watching on TV. Talks to it sometimes. Laughs sometimes. Starts talking to the wall suddenly. Hears me and looks the other way and answers. Hugs everybody. No clue. Recognizes people though. Knows who I am. Might open the car door right and snap on the seatbelt. Probably will get in and out uncertainly or in the back seat and grip the seatbelt like grim death or stare into the car unsure what to do. Steady vacant look emerging and real trouble understanding what I'm pointing at no matter where it is
Might:
Put a fork into the toaster and leave it there. Turn the faucet around and leave it running on the counter. Leave any faucet running and walk away Try to go to the bathroom in the tub (twice) Hover outside the door or just around the corner Go to bed fully dressed in the middle of the day Fill the cat food bowls with water right on top of the cat food Change the channel on the TV Put her outdoor shoes on and walk around the house
Never: Boils the kettle, makes anything, touches the stove, thinks of laundry, turns the TV on or off. Opens the door to the outside, puts on a coat or jacket, washes or showers. Picks up a pen or a phone. Instead talks to me when she hears me talking in the phone.
That's enough. I have no faith in the number system except as a very rough guideline. Everyone is different with different behaviors partly from personality and partly from what is now affected in the brain and what skills that route around blocks which were developed in life (other ways of doing that thing)
Also, there are several waves to this in different lengths. Better, worse, better, worse, but always overall down over the months. Some because of medical reactions in the body. My DW had a reaction to Aricept about every 45 days until that became fainting and we took her off. She can be out of it for days and then suddenly get up the next morning and be 5 times better. That might last for days. It might be gone in an hour.
Every once in a while she is there completely. That never lasts longer than minutes or an hour. It's her. She is coherent and caring and has her voice and says painfully real things and then a light switch gets flipped and it's more weeks/months of the above list.
Dh is late stage 6. We have two kinds of days, day care and no day care. I always have to get him up, or he will stay in bed till 1 pm (after going to bed around 8 pm/)
Day care days: I start turning on lights in the bedroom and talking to him around 7:45, and try to get him up by 8. It usually works to put a cool wet grape in his mouth and set a small cluster on the vanity where he can see them from the bed but not reach them. I have to dress him. He wants clothes on, so is cooperative. The hardest thing is getting his PJs and dirty depends off. Sometimes not till after breakfast. He won't take a shower but will let me wash him down with a washcloth. I put his medicine in a white dish, he has to look at the pills first and count them. I touch his hand, he opens it and I pour the pills in, Then I touch his hand again to get him to put the pills in his mouth. Sometimes he will drink the whole glass of water without putting the pills in his mouth. Then we start over. He loves breakfast and eats well, but only if I put his food in front of him, bread or toast with fried egg cut into bite size pieces. Grapes. Yogurt. Apple in 8 wedges. He will sometime peel a mandarin orange or banana but usually will just stare at it.
Ttry to be finished by around 9, because the van can come anytime after that. I give him his coat which he will either put on or hold. I come here to the computer to read email or play spider solitatire, and he will usually come in and sit behind me, watching. Sometimes he will rummage with stuff on the desk. I leave things out for him. From here I can see the van approaching, so I tell him it's time for us to leave, and go get my coat. He will follow me out the front door and get in the van. At day care he seems contented but does not participate much. The van brings him home around 4:30 and I am here again, see it coming and go out to meet him. If I am absorbed by something on the computer and don't see the van, he will give me an angry look but forgets it (like everything else) immediately. We start getting supper round. I usually have him peel potatoes (he is proud of being able to do this but will only peel one) even if I don't need any for the meal, because it keeps him busy and keeps him from eating whatever I am making half raw. It takes him forever to peel one potato very carefully, then wash it, throw away the peelings, etc. He will sit at the table for a long time eating and then looking at a magazine. After that we watch TV for a while. The only thing he really likes is dvds of his favorite sitcom, a kind of Archie Bunker comedy but situated the Rotterdam of the 1960s, very well done so I enjoy them too. It doesn't matter if he has seen the episode 10 times already. He goes to the bathroom frequently but is largely incontinent for urine. Bedtime is very difficult. He does not want any garment removed and now usually refuses to take a bath, but if he does he will stay in the tub for a long time, which relaxes him. I have to lock the bedroom door because he has a compulsion every step of the way to go back to the living room and sit in the dark, staring at the blank tv screen. I turn on the bedroom tv and lie down on the bed. Eventually he will go into the ensuite bathroom and sit on the toilet: that is my cue to take off his shoes, pants and depends while they are down. That works. He willingly puts on the new depends. Sometimes he sleeps in his shirt. Usually asleep around 8, then I slip out of the bedroom and can spend the rest of the evening on my own.
Non day care days are the same except that I have to provide some kind of outing. We take a walk to a nearby farm with a tearoom for lunch, take a walk to his brother's house or go by car to a restaurant. Often I have visits planned with friends or we go to see the grandchildren an hour away. It is getting harder to take him into any shop because he picks things up and won't put them down and wants to eat food before it's paid for. We sometimes go to concerts on Sundays and he does OK but this is the last series I'm going to subject him to. Soorry this has got so long.
I should add: he says very little. What he says, just like Wolf's DW. is seldom relevant or coherent. He is usually trying to express something, but I have to guess what it is.
Yesterday I was flabbergasted. His brother was here and asked me if Siem could use some pajamas that he never wears. Before I could even answer, Siem announced that we had just bought a pair of pajamas. That was two days before and it was amazing that he stayed in the store long enough to buy the pajamas but even more amazing that he remembered. He really likes these pjs, the first flannel ones he has ever had.