I have been reading Joan's blogs and discussions for months now and have found everyone to be warm and helpful and caring. I am finally ready to enter a comment. My husband has early onset. He is now 65, I am 46 and we have two boys ages 12 and 11. My husband, Pat, was diagnosed almost two years ago. His brother also has EOAD and is probably one more year into this hell than my husband. I could go on and on, but my main concern tonight is that after meeting with the neurologist today I am the one confused. At the last appointment in June, the neurologist expressed his concern over the rapid decline of my husband. Pat dropped four points in his MMSE and MRI and PET scans showed that the disease had spread to half his brain. The neurologist told us months and months ago that because of the disease and the progression that he should NOT be driving. Coincidentally, when we arrived at the neurologist appointment today, we were told that Pat's brother was also there. His brother and wife were invited in to say hello while we were speaking with the neurologist. Pat asked his brother if he wanted to golf after the appointment, which would involve Pat driving 30 miles to pick his brother up and play golf and the drive home. Pat's brother has progressed rapidly in the past year. He doesn't know who Pat is and asks his wife, who is my new friend, and asks Pat, "what's your name again?". The doctor encourages Pat to golf with his brother and gives his ok to make the commute and pick up his brother, golf and then drive home. I am confused. The neurologist states that Pat is the lucky one. He hasn't progressed as much and he encourages him to take care of his brother. Pat scored a 22 on the MMSE today, down from 24 three months ago. During the "exam" Pat thought it was April and that he has Autism, not Alzheimer's, but the neurologist stated clearly that Pat is doing great! Keep doing what you are doing! The doctor does not see Pat sitting all day in a dark room watching Stupid Vision all day while I am at his office trying to save his business. He doesn't realize (I have given up explaining what life is like to him) that Pat doesn't eat unless I go home at lunch to make him a sandwich. Everyone thinks Pat looks so wonderful and is doing so well!! Why shouldn't he? He hasn't had to worry about one single thing in two years. He is well fed and taken care of. I could go on and on. Why am I the only one who think he is declining so quickly???
When I took my husband in to the neuroligist (especially the new one, after a move), I wrote everything down in point form, with the date and stated exactly what his functioning was. Either that or see the dr. before he sees your husband and be sure and detail his decline. How can they take the superficial look attitude towards an assessment. Driving with dementia is very dangerous and should be addressed. I am so sorry to hear of his quick decline and you know more than anyone else. This is such a hard job and I found keeping a journal helped me to see the rate of decline and when I reread it, I am shocked to read how he eas even 6 months ago. Im glad your husband looks wonderful, that is a testament to the care and attention you are giving him.
I think you've answered your own question: Pat looks so well because you are taking such good care of him. Of course, you still will, but I think the major concern here is the driving. It's been discussed many times on this site, and various strategies have been tried, and one will work for you. Perhaps you could bypass the neurologist and take Pat to his family doctor to discuss the driving problem. That was the only thing that worked for me. The GP told my husband that he would have to take the driving test again, and that was enough, my husband didn't want to be bothered. It was easier for him to let me drive him everywhere. The other commonality here is that many of us have found the medical profession let us down at times, especially the specialists. A good family doctor who knows you both, and your family, often makes more sense than the specialists. There comes a time when we go with our gut reaction - it's often more accurate. Trust yourself and don't let the b's get you down.
speaking (or writing) as a primary care physician and alzheimer spouse, I would suggest you take him to his primary physician for all care and stop going to the neurologist. His PCP knows him better and will be more interested in the well-being of both of you.
Next time you take him someplace, don't help him dress. Let others see what he looks like when he takes care of himself. He looks so great because of you--and that's part of why others don't see the reality. Seeing the GP is good advice, IF the GP has a good awareness of dementia and listens to what you say. If the neurologist told you months ago that he should not be driving, he should not be driving. The neurologist couldn't have had a valid reason to change his mind--he may not be paying attention, and comparing him to his brother is not a diagnosis. You have to take charge of everything now, including your husband's memory and getting him to stop driving--NOT EASY--but better than accidents and lawsuits--and you have to keep on top of the doctors and be insistent with the them as well. You don't write anything we haven't heard before, so it's good for you to be here and let those who have gone before guide you.
Welcome Christine 0815. You are doing a wonderful job of keeping all the balls in the air. I too had to step in and close my husband's Broker Dealer business and that was very tough on him as well as me. Getting my DH to quit driving was a major battle. I asked his Dr. to tell him that he needed to get a Drivers Evaluation test. Of course, because the Dr. said he had to do it, he complied. He failed the test miserably, but of course he didn't remember it. The test results were sent to the Dr. and then I called and asked the Dr. to forward the results to the DMV. My husband then got a letter from the DMV stating that his license had been revoked. That did it, as well as me explaining (in kind of a yelling manner :)) that if he got in an accident we would be liable, no matter who was at fault. And our insurance would have no liability cap; we could lose everything. Every couple of months he'd forget again and I'd bring out a copy of the letter from the DMV so he could read it again. It was heartbreaking to see his reaction to it, but it was the only way I could keep him off the road. Just a note; I made several copies of the DMV letter, so I wouldn't lose the original when he took the letter to his room to read and subsequently squirreled it away, never to be found again. Good luck with the driving issue. It's a big one. I hope you have some support throughout this journey. You've got a tremendous burden that you are carrying right now. Come back often. We are all here for you.
I was fortunate in my husband did not fight it. He was still able to drive as long as I was with him to tell him how to get to places turn by turn. Telling him we could loose everything (what little we have) if he got in an accident did little. When I asked him 'if you get in an accident would you be able to remember what happened to tell the police?' Of course he could not and he knew it.
I ditto - try his primary. And if you want a neurologist, I would find another one. This sounds like he has little experience with dementia patients and their reality.
I tend to agree with Marsh in your case. I can't understand the neurologist saying that Pat should go with his brother, who doesn't know who he is, to go golfing...and no Pat should NOT be driving at all. There are ways to get him to cooperate without a fuss too. I just told my husband I was losing my freeway driving skills and he had to let me drive to practice..it wasn't long after that that he decided he like being shotgun! He could enjoy the scenery. But I digress. We were lucky in that all the doctors who took care of my DH were very good and it was his neurologist that ended up taking care of me too when I began to have migraines due to stress...So if you are lucky like we were to have a neurologist with really fine tuned insight keep on with him or her..if they think all is hunky dorey when your husband has shown such decline in 3 months I would " get a second opinion"...Good luck. And do frequent all the topics here. There are many veterans here who can help with your issues as they develop in this awful journey.
Hello, Christine. I'm mostly just echoing what others are saying. My DH also looked wonderful for years--because I did absolutely everything for him. He was a handsome man, but could not put together his outfits so he looked as sharp as he used to--unless I did it for him. Etc., etc. In terms of the driving, it was very difficult, because of course he thought he was absolutely fine. His neurologist actually was the one who notified the DMV that DH should have his driving re-evaluated. The evaluator took DH's driver's license "as a formality" before the test--but DH was so obviously ditsy that the evaluator would not even let him drive our car for the test, and of course did not give the driver's license back to him. It was handled very tactfully--the evaluator said that, of course, if anything changed, the State (New York) would be more than happy to re-test and return driver's license if everything was OK. (Yeah, right.) But I did not have to be the bad guy. DH forgot a couple times that he no longer had a driver's license, and would take the car out to pick up milk or bread while I was at work. Obviously I needed to make the keys go away…and I did. I just had to keep reminding him that the State had said he couldn't drive because of his health, but that if anything changed…blah, blah, blah. He was relatively OK with it…just kept forgetting. It sounds to me like you need another neurologist, or else write everything down and make sure he sees it before he starts making suggestions like driving 30 miles for golf and so forth. That's just dangerous.
Christine, my heart goes out to, raising two pre teens in the middle of this. You are doing a great job, go with your gut. These docs see so many patients and most of the time do not remember them from visit to visit. If you say no driving, then no driving. He will not remember what the doc said anyway. We have to pick and choose our battles.
Thank you for all of your responses and kind words and for confirming my gut feelings. I agree with the no driving at all, but I am not the one that needs convincing. We have seen the PCP and he has also echoed the neurologist in that Pat should not be driving at all. The PCP suggested a road test and Pat shook his head and said no, and I know why. Pat knows he can't pass. The car has got to leave the driveway and that is the only way this issue will be put to bed. On the other point I mentioned about the inconsistencies of what the doctor says at each appointment and the fact that I hang on to the neurologists every word. I don't know where all of you are personally on this journey, but please share your stories. My husband thinks he is just a "little fuzzy" at times and that his brother is so much worse than he is. My guess is that Pat is somewhere in stage five most days. He has had bouts of incontinence, confuses our names all day and his short term memory is gone. He wakes up in the middle of the night to use the bathroom but is literally bouncing off the walls trying to find it until I wake up and realize what's going on. There is a night light in the bathroom, which is a short, straight walk from our bedroom. He is becoming more and more unsteady on his feet, but can still feed himself and shower and shave himself, however, he does not do this regularly. Now that I have posted, I have so many questions and wish we were all together to talk, vent and hug! My biggest struggle right now is that I try to avoid my husband because his behavior, his questions and his actions are so annoying. I never in a million years thought I would feel this way about the love of my life and best friend of 26 years. He senses that I am trying to avoid him, I'm sure. Gosh, thanks for listening!! I know I am jumping around on all different topics!
As to the driving. Ask your PCP and neurologist to report Pat to the DMV. Let them know that you cannot be the bad guy on this issue, it is either them or the DMV. Even then you will have to get rid of Pat's car and hide car keys. But you can then say you are enforcing his lack of license.
Dementia's often damage the part of the brain that would allow them to recognize their cognitive loss. As they get worse they might think they are better, it is all the disease.
It is very hard to change from having a partnership with your hb to making the decisions yourself.
Christine, You are not confused. In fact, you were probably the only person in the examination room (with the possible exception of your sister-in-law) who had any meaningful cognitive function. As Shellseeker says, this neurologist probably had no memory of what he told Pat during the June exam, which is understandable. But he obviously did not look at his records or engage his brain, and that is NOT acceptable. Also, in my experience, what marsh says is correct -- PCPs provide better care than neurologists.
If you want to continue taking Pat to this guy, why don’t you write a short note to him saying: “I am concerned about the contradictory advice you have given to Pat about driving. During his [many months ago] appointment, you told Pat that due to the progression of his disease, he should not drive. But during his October 8 visit, you specifically told Pat he could drive for 60 miles to pick up his brother, who is also your patient. Based on your advice, Pat now believes he is OK to drive. Please clarify your advice.” Believe me, when the neurologist gets this note, he will start paying attention.
I, too, express my sympathy that you and Pat have to go through this hell at such young ages, and with two pre-teens in the house. I hope you will find both support and practical suggestions on this site.
I would add, that since you previously stated he should not drive, but now are saying it is OK, if he drives and gets in an accident I will hold you responsible too. Also get a copy of all his medical records from this doctor and his primary, especially since diagnosis. Hopefully he would have noted he told your husband that previously. Also, in the doctors records you often will find information the doctor did not tell you or you forgot.
About the driving . . . I wanted to add that it usually goes easier if the AD spouse has an alternative way to get to places. It sounds like Pat is alone all day in front of the TV, but if he is not allowed to drive he has no alternative. Would it be possible for you to hire an aide or companion who could drive him places and participate in activities with him? If he can still play golf, the aide could take him to the course or even just to a driving range. I had an aide who took my husband to the Senior Center to play pool and they also went to horse shows, mortorcycle shows, etc., which fortunately, were all free at a local exposition center.
When thinking about hiring an aide or companion, I know that cost is always an issue, especially when you are trying to keep a business afloat. But even a few hours twice a week might help. (I know I sound like a broken record, but is Pat by any chance a veteran? I ask because a VA-paid aide and day care were the only way I was able to work when my husband was still at home.)
Just throwing in another thought: Christine, if there is a second car, you probably should just sell it. Your own car will be with you at work, so he can't take it and drive it when you're not around. One thing you'll need to do, if you have not done it already, is get everything out of his name and into your name alone. You don't want someone who is not mentally competent to be able to make decisions or take actions with your house, business, cars, bank accounts, etc. Most of us have had trouble with this one--it can seem grabby, or like a betrayal--but it isn't.
Welcome, Christine to this wonderful supportive site. You are so young so I know this is devastating. I agree with marsh and other posters with finding a compassionate and understanding GP that will listen to you when you explain what you are an eyewitness to about Pats' behavior. At age 46 with two preteen sons to raise, and working, you should be the main focus in any doctors recommendation concerning Pats' care. Unfortunately Pats disease will only get progressively worse no matter what the doctors say or how many specialists he visits. Stand your ground Christine, and do what is best for you and your sons. Don't worry about jumping around from topic to topic when you post because we will understand. ((Hug)).
Welcome Christine. You are so young with a young family to be dealing with all this. You will get a lot of support here as you no doubt have discovered by reading the posts. Does anyone stay with Pat while you work? Or is it still safe for him to be home alone while you're away?
Luckily my husband never gave me a problem about not driving....that's probably because he got lost one afternoon coming home from the grocery store, end up traveling through 3 states and about 250 miles and was stopped by the state police going the wrong way through a toll. His neurologist wrote a letter to the DMV saying he was no longer fit to drive. I stored his car away from the house and eventually sold it. I also kept close watch on my keys so he wouldn't be tempted to drive again. at first every time we got in the car I told him it was my turn to drive; thank god he was never one of those men who always had to drive. He just got used to getting in on the passenger side.
My DH has never seen a neurologist - his PCP made the diagnosis based on the tests she had ordered to rule out any other cause of his dementia, as well as her observation of his behavior during his visit. For each visit, I prepare a list of my concerns and observations, and the PCP uses these as a guide for her examination. And when it came to taking away his driver's license, the PCP sent the paperwork into the DMV and they notified him by registered letter that his license had been suspended. In fact I get the PCP, or any other medical professional to do the "dirty work" when it comes to taking away activities that my DH thinks he is still capable of doing, but has shown to me that he cannot. For instance a couple of weeks ago we had a visit from the occupational therapist. In private, I asked her to tell my DH that he should not be going down the basement stairs, as he has trouble on stairs and is quite "wobbly". I feared he would take a tumble, since he has frequently fallen on level ground when his "legs give out" from under him. He has stopped trying to go down to the basement, because the therapist made the request, not because I made the request.
Thank you, everyone, for your kind words and advice. I wanted to update you on the conversation I just had with the neurologist. I still can't believe it! From his clinical perspective Pat can still drive, he went on to say that Pat's a great guy and he wants to make him happy. He said that he has not progressed enough for him to tell him that he cannot drive. Even though, for the past year, I have been relaying real events that have happened to this neurologist and "Director of Alz." at this particular hospital in Boston, which include: running over our son's foot in June, 2013, hitting a wild turkey, pulling into our driveway six weeks ago with the trunk open having no idea it is open, I had to replace two tires when he hit a curb 4 months ago, and I could go on and on. I agree, Pat is a great guy, believe me I wish he could still function well enough to drive, but he can't! I just said to the doctor, what if your daughter was standing on the curb when Pat went up on it?! HELLO?! He finally admitted that he was wrong and should have talked with me again before he gave Pat his professional permission as his dementia doctor to drive He still insists that Pat is from all clinical accounts ok to drive. So, I said, well if he has an accident and hurts or kills someone who is responsible? I agree with all of you, there's no need for us to see this neurologist anymore. I just can't believe the neurologist threw me under the bus the way he did and making it seem like I am the bad guy for taking the keys! In answer to your question, LFL, Pat is still able to stay home alone while I work. Thankfully. I would love to hear back from spouses who still have someone at home and would love to know what daily life is like for you and what stage your spouse is in. Thanks so much everyone xo
Christine I am truly sorry you are having these problems. Could you talk to your lawyer about this. Put it on record that you do not want your husband driving stating why and the fact that the neurologist will not back you up. And letting the neuro know that you are doing this. Then if something happens, the neuro would be held at fault??? Not sure if this could be done??? I understand that you are at your wits end with this.
I also was younger when my DH was dx. We had a 14 year old DD at home at the time of dx. She was so much help, and loved and cared for her father to the end.
Christine My DH is still home. He is mid stage 6. 4 years ago he had a car accident when our daughter and I went looking for her wedding dress. He had been evaluated and said he could still drive. He did not remember the accident. He was not charged. The truck he hit or hit him flipped. The other driver was ok. But our insurance agent said I had to wait 2 years if he sued us. That was a long waiting period. I finnaly had them say he could not drive. About 4 months ago he tried to back truck out of garage and was going somewhere. I had a fake key made and put on his key chain. The truck is now at our daughters. I told him she needed it for their move. When it was time to renew his license I got him am ID. He surrendered his license. It still is a battle 4 years later. I took his license away. No one told him he couldn't drive. Of course he doesn't remember.
A day in my life with him home is not pleasant. I have a care worker once a week. I now have to help him pick out what to wear and what to wear to bed. I have to help him put them on. Otherwise they would be backwords or inside out. He cannot fix anything to eat. He really has trouble with his fork. He is up about 5 times a night. I put alarms on the doors. I am so tired mentally and physically. I am going to place next spring. Was waiting until he didn't know me. But I cannot wait that long or if that doesn't happen. I went part time after he had to quit work for the first 3 years. Now I stay home full time. We have. LTC so I am fortunate in that. Our daughters were in high school and college when this started. But now looking back it started when they were both in highschool. The personality changes were hard for them. They are both married now. He is beginning to have bathroom issues and bathing issues. He cannot understand any conversation. His vocabulary is getting smaller. He walks behind me wherever we go. There are so many thing. He paces all day long. I would not leave him alone for a minute. I should have started that sonner than I did. It sneaks up on you. So really watch. Their reasoning and ability to make critical decisions may seem fine at times, but that one time could be bad. He thinks he can still do anything. I now do all yard work (had to repair mower 3 times because of him). He cannot find the light switches, bathrooms, anything in the house. We have lived here 20 years. He is 9 years older than I am. I am 53 he is 62.
Last 2 days I looked for lost glasses, wedding ring. We have now lost 2 pair of glasses. Sorry needed to vent too. But the list goes on and on.
Christine, My head almost exploded when I read your most recent post. I would suggest NOT getting into any further arguments with this neuro or his staff. Instead, . . .
-- FIRST, before going into battle with anyone on this issue, arm yourself with the facts. Politely ask the neuro's office for a copy of Pat's records - say it's for the purpose of having another doctor review them, but say you want to pick them up or have them mailed to you because you want to look at them first. (They won't charge you if its for medical purposes.) Then photocopy the records before you give them to another doctor. That way you'll have the records.
-- If you are comfortable with your PCP taking charge of Pat's AD care, give him or her a copy of the records. If not, then find a doctor who you are comfortable with.
-- If you live in Mass., I think there is a program where various medical centers offer a simulation test and if the person fails, their license is revoked. (I am very surpised that in your most recent conversation, this big shot neuro did not suggest this test as a way to resolve the issue.) When you choose a new AD doctor, request in writing that the doctor ask the RMV to revoke Pat's license unless he takes this test and passes it.
-- In your husband's eyes, this is not just about driving. It's about losing his independence, his hobbies (golf, etc.), and almost everything that he enjoys. So until you get this straightened out with the RMV or a doctor, figure out how to either help him do the things he wants to do or limit his access to the car. The best way to get Pat to stop driving is with his cooperation. The Hartford insurance co has a webpage with suggestions on how to do this. www.thehartford.com/mature-market-excellence/when-to-stop-driving.
My husband's neuro said from the start if he can't find his way without me having to give him directions to places he has been to, then it is time he either quits or can not go without me. I got really exhausted when it got to the point where I had to tell him step by step how to get there, even back home. True, we were moving a lot because I workamped - meaning we traveled around working in RV parks or camps. He had to stop working but I kept on until May 2013. I no longer felt safe to leave him home alone even though the RV was within sight of where I worked. I was afraid he would turn a burner on the stove and fill the MH with gas. Not so worried about him being killed as it exploding with someone else get hurt.
Back to driving - it was more exhausting giving him directions than driving. He never let me drive when it was the two of us. I found out a couple years ago it was because he did not trust my driving even though he is the one with the accidents and tickets over the years.
He had not been driving much, only the MH. When we left Nevada in May 2013 he drove about 30 minutes then let me take over. He said it was to exhausting - I assuming mentally and physically. So I drove us back to Washington which was basically my first time driving. I choose to take a 2 lane road up through the eastern side of the state to avoid the steep passes on the interstate. I am glad because I could go at my own pace and it gave me a lot of practice. But driving a motorhome is exhausting - my arms were so sore by the time we got to our destination. After this he never wanted to drive again. Of course I impressed on him that if he got in an accident he would never be able to remember. And that have a dementia diagnosis if he got in one, it might not matter who is to blame because they would use the dementia to blame. And we could loose what little we have.
My husband's day is: gets up in the morning - brushes teeth, shave, gets dressed, gets his breakfast which is cereal, takes his pills, and on Tuesday and Friday is shower day and clean outer clothes. He still put on clean underwear daily. Since he just sits around not getting dirty he thinks changing outer wear on shower days is fine and I agree. We both are the type to not put clean clothes on every day. Even when we worked we wore the same shirt and pants for two days.
He has a calendar which he has shower days marked and crosses off each day as it goes. In the morning he puts on line across the day and at night finishes the 'x'. He would be totally lost without his calendar. If he gets out of his routine in the morning he will be confused for a while and usually he forgets his pills (one Rx and the other supplements). I am having a hard time reminding myself to check to make sure he takes them.
The rest of the day he sits watching TV or walks around the park - usually a couple times a day. If people are out, he stops and talks to them. I use him to carry the groceries in or the laundry back and forth to the laundry room. He rarely lets me get out of his site. If I am at the neighbor ladies too long he shows up. At the store he pushes the cart right behind me which really bugs me. I miss my space and we all do. We shop at Winco where you bag your own groceries. I separate them on the belt but when he bags he mixes them all up. I like freezer/cold stuff together so I know which need to be put away vs digging through all the bags, but just can't get him to understand that concept. Plus, he will put the bread with stuff that could smash it. I bite my tongue telling myself one day I won't have to deal with him doing it.
I do miss working and sometimes kick myself for giving it up. I miss that few hours that I lived in the 'normal' world but now it is too late to go back. I do have times when I will head to the passenger side to get in or he has headed to the drivers side and when he does he covers it up by opening the door for me.
Welcome to the forum! You could and should for liability protection for you both just call or go hy the DMV ypurself with pertinent info to pull his license. Then they will send a letter that if he cant pass a driving test lic will be revoked. Difficult of course but we have to bite the bullet and do whats safe. Sorry you are having to deal but those of us here are ahead of you in these difficult choices. I have my dh still home -we start 15yrs soon. All the hard choices are left to us. None of us like having to make lifes important decions but we must.
Christine, you wanted to know about a typical day in the life.
Let me preface to say that I am 62, my DH is 74. I retired the year he turned 65. There were already signs that something was wrong, but his (then) doctor kept saying that he was fine. I would say that my DH is currently early to mid stage 6. He is urinary incontinent, has some toileting issues, need some assistance with dressing, and is quite wobbly on his feet. Our children are grown, and live an hour and a half away, and we live in the country, about 15 miles from the nearest town.
A typical day goes like this: DH gets up mid morning. By this time, I have done some quilting while drinking a cup of coffee, caught up on the news and weather on television, looked at my emails and other sites I visit, and done any internet banking that is required, and had my breakfast. When DH gets up, I make sure that the table is set so that he can have his breakfast (cereal, juice and coffee) and morning meds. Then I go to do some chores. This time of year I am doing fall maintenance - raking leaves, putting summer furniture away, bringing in and stacking firewood. Or I will get the laundry started and do some housework. DH is responsible for doing the dishes. This frequently takes him most of the day, and does not include putting all the dishes away. So at lunch time, I clear a spot on the counter and make our lunch (soup or sandwiches)
After lunch, we have a nap. I usually just lie down for a half an hour to rest my back. When DH gets up, we have afternoon tea/snack and watch television (I quilt while doing this) until its time for me to make supper. At about 4 PM, DH starts to pace. If its raining out, I might give him some lorazepam so that I can get supper ready without his pacing annoying me too much.
After supper, we watch television until bedtime. The shows we watch are all harmless, non violent, frequently old movies, so that he doesn't have nightmares. Around 10 pm, I go check my email, and then go to bed to read until my DH decides he is going to bed too.
My DH doesn't look at the calendar. He has no idea what day it is, or what we are doing. I answer his repeated questions throughout the day. This is the extent of my human, face to face contact. I try to stay calm and relaxed while biting my tongue and hiding my anger and frustration. In general, I see no one else, and talk to no one else throughout the day. I crave normal conversation and activities. I have 5 hours of respite every other week, and my DH does go to day center one day a week. I take him to church and I drag him to choir practice or I wouldn't be able to go.
I have recently started putting him in respite for a week each month so I can get back to some of the group activities I enjoy.
So many of your concerns have been addressed by others that I'll just add a comment about the driving problem. My husband gradually was more comfortable with my doing the driving, but we worried because we knew he might decide to drive on his own. He was very aware and protective of his keys. Our eldest son visited the local auto dealer and explained the situation. They gave him an odd key that looked just like the one on his key chain. Luckily, he only tried it once and was accepting that his key would not work. Someone later told us that we could have just damaged his "real" key, but this actually seemed easier.
He's now in the final stages of the disease and curled up in his bed at the nursing home. Every stage of this disease adds new horrors. Christine, I would only add one piece of general advice that I've had driven home to me over and over....don't be resentful of his behaviors. It really is the dementia and not him. Try to fasten onto a time in your past when he was the man you chose to marry. I try to bring up that image every time I'm exasperated or angry, and it does help.
Latest email update from Johns Hopkins re. driving and dementia:
Driving and Dementia: The CDR Test
For the purposes of evaluating driving ability and other aspects of daily functioning, doctors sometimes use the Clinical Dementia Rating (CDR) scale to determine dementia severity.
Severe dementia has a CDR score of 3; moderate is 2; mild dementia is 1; and very mild is 0.5. Decisions about driving are clear-cut for people with CDR scores of 3 or 2: Professionals agree that anyone whose dementia is beyond the mild stage should not be allowed to drive.
There is also agreement that individuals with very mild dementia (a CDR of 0.5) can continue behind the wheel. The gray area: mild-stage dementia (a CDR of 1).
While some groups, such as the American Academy of Neurology, recommend that people with mild dementia strongly consider discontinuing driving, others argue that a good number of people in that group may be competent to drive. Studies to support that claim show that as many as 76 percent of people with mild dementia could pass an on-road driving assessment.
When the driver goes missing. According to a 2013 study in the Journal of the American Geriatrics Society, most missing drivers with dementia get lost on routine, caregiver-sanctioned trips to usual locations. Surprisingly, most are not found while driving. Instead, they're found in or near their parked car -- often a good distance from home.
In a study of 156 records from Florida's Silver Alert program, only 40 percent of the drivers were found in the county where they were reported missing, and 10 percent were in a different state.
These findings suggest that more detailed information about a missing person, not just a license plate number and description of the car being driven, may better assist law enforcement officers and citizens in rescuing lost drivers who have left their vehicles to wander on foot.
To that end, it's wise to keep an up-to-date description of the driver as well as a recent photograph (print and digital copies). You might also want to consider enrolling your family member in the Alzheimer's Association's Safe Return Program, a nationwide alert service that assists law enforcement in finding missing individuals (http://www.alz.org/care/dementia-medic-alert-safe-return.asp).
Thank you all for the advice....and for all of the personal stories and descriptions of daily life. I am here if anyone needs to vent or share an experience. Jackiem29, you have been dealing with this disease for so long, so many of you have. I can relate to so much you shared especially the comment, "it sneaks up on you!" Charlotte, thank you for sharing your personal story too. The shower day calendar is a helpful suggestion. bqd, it seems like you also have a predictable schedule, which is so important for your husband, but I can't help but worry about your loneliness. Please take care of yourself. Thanks everyone for responding to my "fed up" thread xo.
Christine, sorry I came in so late in the conversation but I wanted to "chime" in. The biggest part of my story that I wanted share with you was what the "professionals" told me about my H. The primary care dr. when talking to me, even though I gave him a list of declines, told me that for his "age" it is to be expected and then when he would talk to Lynwood he would smile and tell him he is doing "just fine". The prognosis at that time was vascular dementia. The neurologist that he saw, after the MRI, said it is not vascular dementia because he has no sign of a stroke but what it is now is Lewy-Body dementia/Alzheimer's which is the second most common. On the phone later him and I had a conversation and we talked about how bad it is but in person he acted like it was no big deal and I think it was because my H was with me. I tell you all of this to let you know that in my experience it is possible that the dr. you have been seeing believes that telling you H what he has and how bad it is would be counter productive. Just an observation on my part.
Jackie My husband is also in stage 6 ...sounds like same behaviors only add aggressive / violent behavior. That's What led to my placing him in an Alz Assisted Living. I, too, felt like I would take care of him at home Until such time as he didn't know me if that happened. But, there was really no choice. I could no longer keep him or others safe. It was traumatic for me to separate from him. He is 67 and I am 64. Yes, vent all you want. I'll join you. Two lost glasses, one lost set of hearing aids, wedding band, slippers, all lost in the seven weeks he has been there.
Thanks for your stories and comments. I am so thankful that we are not dealing with the aggressive behaviors. A year ago Pat was extremely combative and mean, but his citalopram has taken that away for the most part. deb42657 I appreciate your comment about the doctor not wanting to say anything in front of your husband. Unfortunately, that is not the case in this circumstance. Neurologist has always told me since we started seeing him almost 2 yrs ago that I am making this worse than it is. I think the bottom line is unless you yourself personally live and witness someone you love with this disease and the decline, then you have no right to say "you are making this worse than it is." Health care professionals, doctors included need to have more compassion for the spouses and families.
Lorrie, how long has your husband had Alzheimer's? I am sure it was extremely traumatic to place him. I am hopeful that day never comes. I feel now that I can't stand being with my husband in the same room because he is so flippin' annoying and I feel sooo guilty and worry that when he becomes more advanced I will feel so guilty that I didn't "appreciate" this time.....I HATE THIS HORRIBLE DISEASE TOO!!!
Thank you for your concerns about my loneliness. I am doing what I can to combat it. I am in the middle of a week of respite, and have been enjoying myself. Because this is a small community, everyone knows that my DH is "at the Manor" and that I am free to do as I wish. On previous respites I have traveled, but this time I decided to stay home and do as I please, although I am busy with cabaret practices and dress rehearsals (opening night is Wednesday this week). I had thought that last Friday I would spend the day at home alone. Well, a friend called in the middle of the afternoon and asked if I could help her with a quilt, and I stayed for a cup of tea. I just got home from that, when another woman called and asked if I would join her and her husband for "happy hour". He has Vascular Dementia. I had a great time on both outings. It is wonderful to live in caring community.
I am taking a week of respite each month for the next 6 months, while I decide what to do about placing my DH permanently. Each of these breaks is scheduled around activities I enjoy that I missed because of caring for my DH. This added to my resentment. It sounds like you are ready for a break, and I think you should take one if you can.
Oh yes, and I should add that I chose for my solo at the cabaret "I'm so lonesome I could cry". I am working at getting through it without actually breaking down into tears, particularly on the night my DH and my children will be attending.