My DH dresses himself, can do dishes, laundry, golf, drive to the golf course, mow, vaccum.....but he can't bait a fish hook, remember what/when to take his pills, shave properly, remember to brush his teeth, remember a conversation 5 minutes ago, remember what word he wants to say, know what day it is, often not even remember what year it is....I can go on and on. He is physically fine. Mentally he is shot. I just wonder how long this can go on. He's not even close to a nursing home but he makes no sense when he talks, repeats every question or statement 10 times per hour......His doctors diagnose him with "senile dementia" and he is only 60. I think Lewy Body ... Not sure where to go from here.
I'm so sorry to hear this. My DH is in the late stages of Alzheimer's and is now 68. I remember when my husband is where yours is now. Get educated and you and your husband should see a elder care attorney to get legal matters arranged if you haven't already. I hope that you still can because you will need a durable power of attorney. You need to understand what is coming and so you can prepare. Joining a local support group will help and make sure you get regular breaks because this journey only gets more difficult. You will never know how long this will go on but it will feel like you are watching your DH die little by little over time and you will take on ,ore and more every day.
There is a comprehensive resource on the left side of my home page - www.thealzheimerspouse.com - that will answer most of your questions. It is titled, "New Member/Newly Diagnosed". Just below that is a resource titled - Understanding the Dementia Experience, and if you scroll a little further, there is one titled "Early Onset Dementia- A Practical Guide". I would strongly suggest reading those resources, as they will be a great help to you. There is also a section titled "Finances" that will help you be prepared. Those resources are there to help and guide you through every stage of this journey.
As for the things your husband can and cannot do - it is a very strange disease. Different parts of the brain deteriorate at different rates. My husband is the same way. He can do all of his own ADL's - dress, shave, shower, teeth. No problem. Yet, as my blogs tell the story, he cannot remember anything from one minute to the next, has little to no reasoning skills, executive functioning, or motor planning. How long will it go on? No way to tell. Something could happen in a minute that can change everything, and he could go downhill quickly, or it could be a long, slow process that takes years.
Vaccum! My DH wouldn't even do that before he got dementia. haha! But seriously,Joan is absolutely right something could happen any minute to change everything. My DH shows some kind of decline every 4 to 6 months so far and from what I understand the further along they are the faster the decline. I don't know if that is necessarily the case with everyone but I think that is in general.
This is a strange disease. Every case is different, depending on what area of the brain is being attacked. I would say assume you do not have long, and go do the things you want to while you still can. The waiting for the other shoe to drop while you take care of somone who can not do for themself is really hard. My wife is totally dependant on me. She can feed herself with her hands. Her day revolves around TV and she can not figure out how to change the channel. This disease requires you to give up your life and take care of your spouse, for richer or poorer, in sickness and health. I never thought I would be in my 50's sitting, waiting on her hand and foot hoping this would move on quicker.
Beautiful advice moorsb. I love it that you say assume you don't have long and do the things you want to while you can. There comes a time when you know it doesn't matter if they eat with their hands or forget to laugh at the right times. It doesn't matter if they can't do all their own toiletries, just that they smile their sweet smile, have faith that you are their for them, and you know they love you even when they say it but really don't know what it means. I am learning to appreciate what my dh can do even if other "adults" would laugh at it as silly or dumb. It is my memories of the man I love. It is our life now and God is blessing me with great memories that this horrible disease will never take from me. I wish my dh could do things he could do in the earlier part of the week, but he can't. Probably never will again, but who cares......... He is still the man I love and the sweetest person I know. I love him like when we first met,,,,,,, thank God for our memories and moment by moment living..........
Sheila, I know you don't want to hear this, but if your DH is mentally shot, how can he drive safely to the golf course? Driving takes alot of mental awareness, anticipating. My DH was diagnosed at 58 with pre-senile dementia and the neurologist didn't even tell us what the diagnosis was. When I called the office and asked what they had diagnosed, I was told pre-senile dementia. I asked if that meant he had alzheimers disease and was told "not necessarily", but was never informed of the various dementias. I did a lot of research, found this site and I got a second opinion and he was diagnosed with FTD or a possible mixed dementia - FTD/AD. Moorsb gives you great advise - do as much as you can now while he is still physcially healthy. My DH can do all the ADLS, and is physically healthy but he is totally dependent on me or the aide we have for direction and of course his memory is quite bad.
Sheila, LFL said what I wanted to say, but didn't. I made Sid stop driving THREE years ago. He was NOT physically disabled, as he is now. He did a lot more to help around the house, and his cognition was much better than it is now, BUT it's the memory, judgment, and reasoning needed for driving that he did not have. TWICE he "forgot" to put on his directional signals when changing lanes, and almost hit another car in the other lane. I didn't wait for the third time. His reasoning? He said that he wouldn't forget the next time, and it wouldn't have been a bad accident anyway because he wasn't going that fast. On the highway, he kept weaving over lanes. His reasoning - "Well, I lost focus for a minute. Everyone loses focus sometimes. I'll remember next time." Oh, and 6 months before I had had enough with the driving, he had PASSED the state's stupid driving test. His "mechanics" of driving were good, but no way should he have been behind the wheel of a car. To this day, he thinks he can drive. He can't walk; he has poor balance; his knees have stress fractures; his legs are weak from sitting for a year trying to get his bones to heal; his feet and legs hurt from neuropathy, but he says there's no reason he can't drive.
As I said when you asked how long this was going to go on - it can change in an instant. They can lose focus, lose memory, anything can happen, and you don't want it to be when he's driving. I don't know if you know this, but............. YOU are totally legally responsible for everything he does, and if he has an accident that causes injury to someone else, YOU will be sued.
Also on my home page, on the left side of resources, there is one that says "Dementia and Driving".
Sheila, I strongly echo Joan's message.After I returned from Iceland in 2009 and before I knew what was wrong with my dh, ( I was at the point of frustration because I thought he was not listening to me) I learned he had been in a fender bender. At a parking lot, he bumped another pick up while he was backing out, hit the other pickup and left a dent in it. He did not leave a note for the owner of the other pick up. However someone saw this and reported it to the police who came to the house and gave him a warning and told him who to contact to fix the other person's truck. This was done. ( my bil was here then and even he didn't tell me about this) Then, he did it again within a week or so of when I got home. I picked up a message on the message machine and this guy went on to tell him how much it would cost and he didn't want to spend that kind of money on a truck with a lot of miles he wanted to sell..he said how about just 150.00 so I can touch it up and we will shake hands and be friends.. Other things I noticed and started the rounds with all the medical heroes to find out what was going on.Mind you I did not know what was wrong yet. But by that Oct we were given the dx. DH has not driven since BUT he will tell everyone he can, he just lets me do it now.. Then three weeks ago, after we finished at the doctor's office, he said let me have the keys and I'll open the car. ( it was hot out) so I did only to find him behind the wheel,backing up the truck and turning it around. He said he wanted to be sure he could still do that..and he can, his skills are still good but it is his judgement with relation to how close he is to another carH is the questioin. He was an attack pilot who flew in very close formation and when he was well he could judge the closure rate..scared bloody hell out of me...but now??? No chance will I let him drive. Thank goodness the other day he said " I don't think I'll renew my driver's lic in 2014..I'll be 84 then and you are so much younger than I am , you can do all the driving then."
I keep telling him now that with his heath problems ( which he denies he has) he will be more rested when we get to where we are going if I drive, then he can enjoy himself more. He likes that idea so you might try that reason to see if it helps with the driving. If he asks why he can't drive I tell him his doctors don't want him to drive and when he asks why I tell him it is because of all his health issues like his heart surgery and small stroke ( I hate to remind him is memory is faulty). Then he says he is going to ask the doctors about this and I tell him yes,let's see what they say.
I will tell you, once you take on all the driving you will find you start to drop things you were going to do to get for him or go where he may want to go just to keep him from trying to drive..Know that ahead of time.
Mimi your story reminds me of a friends father that should have quit driving years before he did,we were on our way fishing one day an had brought the old boy along,he was sitting in the back seat not saying much while my friend an I were busy chatting,now at the time Corvette had just restyled the body to a wedge shaped front end that sloped down in front,an as we passed one of the new Corvettes the old boy said hey that car there is just like the one I dragged at the shopping center,thinking he meant towed we continued on talking about fishing but the old coot wasn't finished with his story,seems he was driving an old pickup with a big trailer hitch on the back an had backed up over the hood of the Corvette an put the hitch right thru the hood of the Corvette,not realizing what he had done he took off pulling the sportscar until it finally ripped loose,he then continued on his merry way oblivious to the damge he has caused,it wasn't until he knocked down about a half dozen mailboxes a week or so later that the law finally caught up with him,ah the memories
Oh my goodness ol don! I can only hope that does not happen to anyone here. Right before DH was dx. He ran a red light and pulled out into oncoming cars. I about had a heart attach on both. Then the dx came a week later and I told the doctor about it and we both told DH no more driving! And he has not driven. I traded both cars and he has never driven the ones we own now. He says he could drive, just like he says he could mow the lawn. And has not done that either in years. I think he just likes to say he can.
I think some may be able to drive longer than others, but we never know when that tipping point hits. We could have been hurt or hurt someone else. I hate to think that could have happened.
This subject bears out my "pre-diagnosis" that something was wrong with DH back in 2003... He backed out of the driveway, hit the car parked across the street, got out , inspected it, drove away... Meanwhile I watched the whole thing from the bathroom window...when he returned, he said nothing.. I prodded, still nothing, then he finally said that car should not have been in HIS way and it deserved to be hit.. We're not talking about a minor dent, it caved in the center post between the front and back doors.. DH said, since it was on the passenger side, no one would see it anyway...All this coming from a man that, formally,believed right is right and no middle ground... From that day on, I noticed other weird things developing but only this week did I get a firm "dementia" diagnosis.. Thanks for listening.. Seems we all have so much in common.. God Bless.
peggy-interesting point. Many years ago=before diagnosis-my husband gets into our car with a gallon of undeeded windshield wash solution. It was just there on display so he took one.
I traded in our Lincoln Town Car on a Prius and there's no way he could have figured out how to start a keyless car. A month later he was placed and still thinks his car is out in the parking lot there, but says that "I don't drive it very often."
This is all just so darn sad...especially when they think they can still drive or their car is in the garage and yet they don't recognize a new one or that the old one is gone...like so much else...
Yes it is sad. I would like to get rid of 1 of our cars so the temptation isn't quite so great. Today has been a good day tho. He took a walk with the dog first thing this morning, went out for 9 holes of golf and mowed the yard when he got home. Now he is going to have a beer and I am sure a nap is in his future. I got the house cleaned while he was gone so I might take a nap too!
Proving that nothing is forever, I fixed our lunch and headed out for errands.. gone 40 minutes.. got back DH had decided to fix another lunch, fell, hit his head, and tore up us arm/elbow.. so off we go the the dr.s.. Dh diagreeing with this as we go.. ya see, he never needs care..blood dripping everywhere and he doesn't need care?? The most concern he showed was that he was missing Rush Limbaugh...It is apparent, I've reached the point that he can't be left alone for any length of time... and here I'd learned to do sooooooo much in half hour??? I think I'll fix a margarita, grab some chips and dip and lock myself off in the tower..
Sheila 1951 ... one more nod in agreement with those who say your husband should no longer be driving. It's not a question of 'if' a day comes when he is in an accident and injures himself or others or damages his car or someone else's property ... it's when. Much better to stop driving before this happens. In our support groups, we always say to newbies whose spouses are still driving after an AD diagnosis or any demetia diagnosis, "Do you feel 100% safe and comfortable letting your spouse drive alone with your grandkids in the car?" If the answer is no, then the spouse should no longer be driving.
My dh could always handle a car just fine but there were other issues such as not processing language on signs. About a year ago when I told the dr. that if dh were stopped he could never express himself properly, the dr. told dh not to drive but let me. DH accepted that better than I thought possible. Six months ago, we were going to the store and he told me he was driving. I thought it best not to argue so I said a prayer and held my breath. He got us there fine and when we were finished shopping, he said he would get the car, bring it around because it was raining. He pulled up to the door. By that time the doors had automatically locked, he couldn't remember how to unlock doors manually. Because car was running I couldn't unlock doors from the outside with my key. I walked around and told him to lower window. Couldn't find the buttons for that. I finally got through to him but I was soaking wet. We came home and that is the last time he drove. He will wash the car, move it out of garage, put it back in and I hope that satisfies him.
Last week we went for an oil change. Mechanic found tie rod was bad, only 18,000 miles on car. Made appointment for repair. When we came home I asked dh what a tie rod was. Bear in mind he worked all his life as a mechanical engineer with auto company in advanced research. He didn't know what a tie rod was!! He found a text book and showed it to me but the diagram was not a tie rod but something else. I could have cried. This was a car man through and through. I am wondering what percentage of memory he has left compared to what he has lost.