I was just mentioning on another thread how I was trying to determine which stage my husband is in, according to the seven stages chart. Thank you JudithKB and Charlotte for your feedback, yes Charlotte, it is weird how they seem to go back and forth.
Now, if anyone wants to me he seems ok....how can they explain this?
We went out in the truck to gather coconuts in the bushes. (Now, he sits in the truck, passenger side of course as he does not drive.)
I left the keys on the floor, out of site, as I usually do. You will be starting to get it now I am sure. I truly did not think he was this out of it.
I was thankfully just across the road, when I heard the truck start up. I saw it go very slowly about 50 feet, and slowly drive in to a rock wall and stop. (NO damage it was going real slow)
I RAN AND STUMBLED out of the bush, fully expecting to see him in the drivers seat. NO!! He was still in the passenger side, had picked up the keys, turned the automatic truck on from THAT side, and put it in gear!!
I quickly moved it and tried to ask him, WHAT were you trying to do?????
I noticed his hands were shaking, and yet, he seemed like he thought he was really doing something ok, though he could not explain it. Was wondering why I was so shook up.
I KNOW I KNOW I WILL NOT LEAVE THE KEYS AGAIN!!! Likely my days of leaving him in the car are soon over. This has been my saving grace, to be able to do things and just have him wait.
People think he is "ok", not that bad, because he can say hello, and by just saying yes or no or agreeing they think he is sort of conversing. Yesterday was the first time it took him a moment to remember my name.
OH I WANT to be ok , to not freak out, to have more than one day where that sinking churning feeling is not in my stomach. Is it any wonder, I turn to bad eating habits, sometimes I even drink a bit, (this is new), I cannot fathom it all.
So just letting you know, I realize there is not much advice to be given except about the keys.
Coco, no keys where he can get them (I know you already know :)) My DH hasn't driven for almost 4 years but still has the urge and would try if I let my guard down with the keys. It is very hard for anyone (particularly those with dementia) to agree to give up their freedom which driving signifies. I am a hawk-eye on everything and he still manages to get into trouble. I know you're doing your best (which is great) but be prepared, he'll out fox you on something you just don't expect! Villigence.
I'll say.. I have something to add to this type of thing. I took the check book a long time ago, and the credit cards too..so yesterday in the mail comes some sort of package from the American Mint..not the US MINT..it had a tray and two silver looking coins ( challenge coin kind of things) but with Lincoln's speech, and a couple of ads etc...and the invoice. I didn't order this..DH doesn't recall it..complete mystery to him. So I call them this morning and cancelled it out, told them about the alz and it seems DH respponded to a mail ad..and got into my purse and got the check book and paid for something. No harm done but the threat is there that he can try this again.
Mimi, beware of the TV ads-every time a TV ad comes on with a toll free #, DH picks up the phone and calls to order. He doesn't have any credit cards anymore because before he was diagnosed he bought things on his cards which he couldn't pay for so all his cards were cancelled due to non-payment which of course ruined our credit rating. Don't let him have access to to the checking account-when a website or marketeer wouldn't accept a cancelled credit card, DH gave them his routing number and checking acct #. They took payment from the checking acct and when that had insufficent funds, they kept submitting the bill for payments and ran up hundreds of dollars in overcharge fees. It was a nightmare to resolve and credit rating is still recovering.
OMG...this is such a worry. I too had to take DH's keys off him, he's been banned from driving, had his license suspended. If caught driving our car would be impounded for 28 days and cost $1000 to get out. Now I carry his keys...my goodness it like the keys to the whole town, I have no idea what most of the keys are for, weighs a ton! Coco, same here. one day is never like the last day...I too don't really know what stage Dh is at!
Coco, I learned the hard way too that I have to have my keys & cell phone on me at all times. My DH locked the screen door & closed the storm door when I went outside for a minute. He didn’t hear me pounding on the door & when he finally opened the storm door he couldn’t understand that I needed him to unlock the screen door. When he finally “got it” he couldn’t understand why I was so upset. I’m actually one of the lucky ones. My DH gave up driving on his own & he has NEVER wanted to drive after that, in fact he told me that he is afraid to drive. I let him keep his keys, but he kept on “misplacing” them. The last time it happened I thought they were gone for good (we have a key fob for our van that costs about $150 to replace). So when I actually found it I just didn’t give it back to him & by that time he didn’t care anymore.
Coco--I am sure this was a terrible ordeal to witness! I'm wondering if you were out of sight, and your DH felt afraid being alone in the car and was trying to "go home" or to find you. Obviously, he remembered he needed to find the keys and how to start the car, etc. I could imagine a child doing the same thing. As the short-term memory disappears, we are their security blankets and their link to the world. So leaving him alone in the car isn't just a safety issue, but could be difficult psychologically for him if he forgets you are nearby.
Another prepareness activity is to never let your AD loved one go beyond a locked door that you dont have keys for. My front door gets quickly locked behind me just walking out to get the mail or newspaper.
Coco he could have just as easliy closed and locked both doors and then been unable to figure out how to unlock them. Members here have had to call out locksmiths to open cars with their spouses 'locked' inside(!) Talk about embarasing . . . .
This includes gas stations too. You step out to fill up and innocently leave the keys inside while your spouse casually pushes the lock button and then stares blankly at you. Some members have put magnetic key holders under their fenders etc just in case. If they MUST have a key (for old times sake) get a fake one that works nothing and put it in their pocket.
The stages are very inexact - It is amazing how they can be BOTH helpless and very capable at the same time.
He does not want to drive, there is no problem there. No need for fake keys. But, I still do wonder WHY he started it up? MarilyninMD I wonder if that could have been it...?? Looking for me. You know, I won't leave him anymore, but I have been doing that for a year and he always likes to sit in the car and wait for me.
Dragging him in to the stores against his will until I figure something else out. He always insists on waiting in the car. Of course it is warm here.
M-mman the other day he locked the screen door in to the house, and it took quite a bit of coaxing to get him to figure out how to unlock. This would be serious in the car, though I do carry a spare.
What a strange weird disease. It is hard to find much to understand about it. Even if I could have him get it when I say silly things, it takes alot to even make him know if he is supposed to laugh. I miss my pal.
DH gave up driving after he had a fender bender - not his fault, but he handed me the keys and that was that. No problems since. When I stop to fill up with gas, I always take the key with me, and lock the car doors. It takes him awhile to figure out how to unlock the door.
Coco: Don't do like I did and wait to long to take whatever action you think is right. My DW ran the car thru the neighbors yard, not down sum shrubbery and the mailbox; never stopped, drove the car home, put it in the garage and didn't tell me about it. Long story short, me and the children almost had to pry the keys out of her hand with her crying and screaming. It really was a terrible experience, but, it had to be done. Of course, now she doesn't even remember any part of it.
Wishing you Well.
PS: I wish I had known about this website long before I did. I could have avoided some of the mistakes I made along the way.
Just taking in all you and the other posters have said here.
The precautions we must take. One of the reasons H was discontinued from a couple of meds- aricept@23 and generic depakote was that opposite N's prediction it increased his desire to drive.
His car sits in the garage. It has two soft tires and a keyless entry sensor whose battery has died. It makes me crazy to continue to make payments on this car, but feel I have no choice as he would certainly notice if it (towed) was no longer in the garage. I highly doubt it would start anyway since it has not been started in more than a year. He is always here, so there is no opportunity for me to try this.
My car also has keyless entry and the sensor is always in my bag, which is hung over a chair near my bed. My landline phone is next to my bed and often I tuck it and my cell under the adjacent pillow.
If you told me even a year ago I would be living like this I would not have believed it. Okay, maybe two years now.
Sending you and all who deal with this prayers and affirmations.
I carry house keys on me all the time since I get locked out , safety you know...he got hold of the check book when I was paying bills..The TV is already an issue mainly over any WW II video of which he has double sets..and how many ways can the battle of Okinawa be fought? I tell him we already have them, drag them out and that is the end of it. That is the only thing on TV that has his interest. If something else pops up I just tell him I'll check on it at the Everything on TV store at the mall..we do have one...so that helps..then he forgets it for awhile.
I just wanted to check in here before bed. I go out to the back garden area to feed the birds. As a precaution to being locked out, I take a key that unlocks the door between the outside and the garage, and between the garage and the pantry (the door between the pantry and kitchen does not have a lock) and put it either in my jacket pocket or somewhere outside the door.
I fear he will not realize I am outside and will shut the doors and lock me out. (Or maybe will intentionally lock me out!)
abby - arrange with a dealer to buy it back. Tell him a fiblet that it needs to go in for repairs. I agree - not too wise to keep making payments on a car you can't drive.
I have push botton locks (http://www.amazon.com/dp/B002KMK04C/ref=as_li_tf_til?tag=wwwthealzheim-20&camp=14573&creative=327641&linkCode=as1&creativeASIN=B002KMK04C&adid=1QWE1C9G7TW05R0S2CDQ&&ref-refURL=http%3A%2F%2Fwww.thealzheimerspouse.com%2F) on several doors of my house. It means we don't have to worry about getting locked out, and I can also set a separate code for a paid caregiver and change it if that person stops working for me.
The push code locks are awesome. If you cannot do this then make a copy of the key and hang it deep inside a bush or shrub in the yard. I use fising line to tie it in. NO one will be able to see and only you know that it is there.
I can relate to your "episode". My husband's car has been sold, he carries no money and no "official" ID, I don't leave him in the car,and on and on. I am not so smart that I just made these changes on my own.Each one came from a hard lesson learned that probably involved 911, the police or Children and Families Care rep.
We have house phones,but have them hidden and not plugged in, I carry the house portable phone in a fannie pack 24/7. One of his antics led me to learn about a key safe. It is a very strong little box that is screwed outside the house with a combination that releases a house key. They are at Home Depot or a locksmith. The combination can be given to ER or trusted others. we have ADT monitored security and the boxes have buttons on them that go directly to Emergency,Fire or Police in case he needs it rather than phone. He didn't make calls on the phone but would talk to anybody that called.
Last episode involved him with chain saw - he was just trying to figure how to make it work. So power tools , ladder gone.
I resisted getting rid of Gord's cane collection. What harm could there be in those? I came home one day to find that he had been chasing our PSW around with one of the canes. One has a brass head and that could do serious damage.
PS I hit the post button before I wanted. When the Children and family Elder Rep came, she seemed to make an impression on him. She told him that what he is doing isn't safe and if it continued,their agency might have to place him WHERE they chose and that they would take control of his money if they took custody. He said that if he had to share a room, that he didn't want to go. For now, that seems to keep him in tow.When he starts to complain, doesnt want to cooperate, I tell him I agree but that Lady has told both of us what we have to do.
I don't mean to make all of this simple and easy, it wasn't. But that is where we are today.
Now--where do you go to pick up coconuts in the bushes? That sounds like fun.
Now why does he remember that and can process it - go figure.
Mary* here - I just wanted to remind those who have not yet taken the advice of others here on safety measures:
Our spice are like children: you can no longer leave them alone in the house or the car. They will get into the cookie jar. <grin> (computer, mail, TV remote, cell phone, etc.) Someone needs to be with them to prevent them from harming themselves or others. Just when you think you imagined that they seem to be better and let down your guard, BAM! They don't do these things on purpose. They can't tell you WHY they did them- they don't know. Their minds take action, but they can't think.
Women, did your husbands ever go through your purses? You seem to think that is a safe place. WRONG! A locked safe in your house or the trunk of your car is safe. Or a locked closet. I bought rubber spiral wrist bands that I could put the house key and car key on and wore it on my wrist all the time. Cell phone by you, under your pillow is good. Finding things that they move or hide is tough...we made a hide and seek game of it every day! It made it fun, and kept the tension down.
Also, spice should ride in the back seat so that they don't grab the steering wheel from you as one spice's husband did. Another got out of the car when stopped at a red light! Childproof door locks in the back seat prevent this.
On movies, some seem to want to watch the same ones over, and over, and over, and over - there are five movies I know by heart....then out of desperation, I bought some he liked in the movie theater and he would watch them, thank goodness. The needle is stuck in a groove in their brain and they find comfort in watching something that they can still comprehend. Somewhat.
Their brains can't think, can't reason...the wires connect for a while, then disconnect....remember that they are like toddlers...safety has to be first.
Most of you have already taken the necessary precautions - I wrote this for those who may not have heard it from me before!
Good luck!!!
Hugs, Mary* (one who made it through and didn't pull all her hair out!) <grin>
Coco--you are now learning how this disease works. You said you've been leaving your husband in the car for a year and it's been fine, he waits for you. That's how it is--suddenly, what used to work, doesn't work one day. This is one of the big reasons caregiving is so challenging, it's a constant case of a "moving target". NOTHING stays the same, over time, it is a continual process of adapting to the downward spiral.
The best thing we can do is listen to the others who have gone before us, and take as many precautionary measures as we can BEFORE our LO's get into trouble. Unfortunately, being on high alert--all the time--takes a toll on you. However, I found that the earlier stages were more challenging in this department and as the disease progressed, my husband became more apathetic, could do little for himself and gratefully accepted help. This really cut down on the mischief he got into. For example, some people had to lock up cleaning supplies, paint, etc. so their LO wouldn't mistakenly ingest them. I never had to do that because Steve went from being somewhat self-sufficient to needing a lot of care pretty quickly. So you need to make adjustments, as you go along, based on your husband's needs and behaviors.
P. S. If your husband follows you around in the house (shadowing), I feel certain that he started the car in an attempt to find you. If he's not shadowing you yet, he may start soon.
I thought I would ask this question here instead of starting another thread. If anyone reads it , input would be greatly appreciated.
As some of you know, my job is to sell my coconut and gourd products at a weekly Farmers market. We drive 2 hours to the town, set up. and spend about 5 hours there. It is getting really hard to sell my wares and keep a side eye out for dh. He usually sits in the car, but have seen him wandering, and, after this incident mentioned above, I see I cannot leave him alone in the car anymore.
Sadly, he LOVES to come to the market. But it is too much for me and can affect my sales when I am not giving customers enough attention.
MY QUESTION.....Even if it was a financial strain, (but not unheard of), and if you had found a lovely caregiver that lives right across the road, would you pay her $75 to stay with him the whole day, from 6 am to 4? I make about $225 average per Saturday, so I could only do it occasionally for a break. Maybe once a month. (In the meantime look for other solutions)
VA will eventually kick in 12 hours a week respite, but the caregivers are 2 hours away and I cannot see how it would work. I am going to check if there is a place they have where maybe I could drop him off in town on Saturdays. I have not even been approved for respite yet, that may be a few more months.
The woman is in early 30's, her main job used to be physical therapy. She seems like a nice young person and we want to have her around to see how it goes first.
Anyway, $75 is alot of money to me, ...however I could swing once a month if she seems good. What do you think? The market is packed up by 1 pm, and that gives me a little time to shop.
I grow hardshell gourds, all varieties large and small. We do a "inner dying" thing, where you scrape the skin with the design, and then fill the gourd with strong coffee. The skin that is left on will "pull" the color through, (takes about a month), then it is scraped off to reveal the design. Kind of hard to explain but if you google, "Niihau Hawaii coffee dyed gourds" you will see. I also make small boxes and ornaments out of the smaller ones.
Yes I think once a month would be a great break, hope she works out to be as good as she seems, and it is not too good to be true.
Coco, would she agree to come to your house for just a couple of hours on a day when you will be there? You could sort of disappear (in the house), just to see how they "take" to each other. I would try that first before leaving him with her the whole day - without a trial run. Sounds like a good deal, if it works for you.
Go for it. I agree with Vickie try a couple hours while you are out of site first to see how it goes. Another option might be to find someone to watch and walk him around the market. Maybe another vendor have a special teenager who would be interested and it might cost less.
Coco....Recently I hired my twice a month cleaning lady to be at the house an hour more then she usually was here and watch my dh. That gave me a total of 4 hours every other week. You might want to consider having her do some light work house work while she was at your house. This would help you too.
Also, have you thought of selling your candy and gourds on Esty. You know Joan is selling her knitted scarves there now. I was one of the original people selling right after they started the site. The only requirement is that what you want to sell is home made. I use to sell my baby blankets, hats, scarves, and many other things. I did very well until my dh required so much care. I hope to get back to it sometime soon. required so much care. It is very easy to join and doesn't cost anything until you sell something and then it isn't that much.
Coco, yes, I agree you should try her on a trial basis first - a few hours. Does she have any experience with dementia patients? Or young children? I ofthen find people with the experience (and some who do have it) don't have good redirection skills if DH gets focused on something. In NJ caregivers are paid $22/hour through an agency and @ $18-20 if they are private.
coco. i think you have a great opportunity to have this lady come and help. for 6am to 4pm is 10hrs for 75dol. thats of course is 7.50dol an hr!! thats really cheap considering what most of us pay for inhome help. i pay 22dol x hr! so all day would be a very good idea to get some relief whle you work your market. without having to watch DH at the market you may make a lot more money too - i would also take a few times to get her used to him and viceversa. being 2hrs away is quite a ride home if things arent planned well. he and you need to feel comfortable with this but i think its a great idea. divvi
"People think he is "ok", not that bad, because he can say hello, and by just saying yes or no or agreeing they think he is sort of conversing."
This drives me totally crazy! I guess people (including family) who don't live with them every day just want to believe what they want. It's very frustrating.
coco--that is the best rate I've ever heard of for dementia care. If you are comfortable with her, I'd say give it a try! I am sure you are aware that when household help is hired, there are laws about paying FICA, taxes, unemployment. However, she is charging so little and if you use her infrequently, her earnings may not be enough for this to apply (and of course, plenty of people pay for help "under the table" and ignore the laws). The only thing you might want to consider, if you're going to have her watch your husband on a regular basis, is to add a rider to your homeowner's insurance, protecting you in the event she is injured while caring for your DH in your home and she sues you. I always used an agency for help, so I never had to do this--but I was told that it's inexpensive to get the coverage.
Thanks so much for all your feedback! I don't know if I was clear, this is just a "layperson", a woman who used to be a physical therapist. She is early 30's, and just seems to need a few extra dollars. Her husband and her only come seasonally, they will be leaving the end of March.
She is going to come over Sunday and hang out with us a bit. The reason it is $75 is because I told her that is all I could come up with.
As to honesty, and integrity, well, I do not really know her, but have heard good things. We will see. I could only afford it maybe once a month, but it could be MY day!
yes Charlotte I can actually think of a young man that may keep an eye on dh, his parents have a booth at the market. He is a nice teenager, I may check that out.
You mentioned his family, that is a LOL and a mystery. You know, those sisters, in their native culture, have often commented on "haole" ways, (white people like me), who do not care for their own.
This, from sisters that did not call over any part of the holidays, that have totally ignored my past pleas for help, and the deep need I know their brother has for their love.
Coco, have you tried the Alz. Assoc. or the Department of Aging for respite funding? Sometimes they offer financial assistance or can give you information on grants that may be available . My DH attends a daycare that is based on according to our financial situation, because they have been given a grant. They have been a real blessing because I could not afford DC otherwise. They even offer 1 Saturday a month.
Coco, reminds me of a terrible story with my hubby. It was summer 2010. Lloyd couldn't be found anywhere. I looked all over the house and looked up and down the street. I waited awhile and finally gave up and went to the car...and there he was. He was inside our black car with black leather seats and he was panicked. I have no idea how long he was there, but I know he would have died in there if I hadn't found him when I did. He had gotten in and couldn't remember how to get out. He was soaked in sweat and so weak that I could hardly get him back in the house. I got him in, stripped him, got him in the tub to cool him down and laid him naked on the bed in between a couple sheets. Scariest thing that has ever happened, second only to our trip to the ER when they put him into respiratory arrest.