We've been dealing with Dh's smoking for years. Dr.s have said he used it and his coffee as self-medication long before crisis got him diagnosed and treated (first for Schizo-Affective Disorder and then VaD). Even after he came out of the hospital after a month in 2006, within 2 weeks he was bumming from friends. At that time he felt everything had been done to him--Meds changed; his coffee taken away(decaf only now) and his cigarettes too. I suggested to him that it was best to quit and if he wanted to, I'd help all I could. He could set the date or limit when he'd start. That way it was is decision (not done to him). That lasted 3 months. Then his mind remembered he was a a smoker and he went after cigarettes--walking in a blizzard. He persisted; I had Police bring him home. When he'd do this he had to cross--going and coming--a 5 lane street. He'd nearly be collapsing when he'd get back. He lost the cigarette store and had to go to the gas station. He sold things--a chainsaw for $12. He panhandled and hitch rides. I finally decided to provide a set supply if he would stay home. It worked...Until now. My job stopped last October--net income drop by $400 a month. Increase to Soc. Sec. and Soc. Sec. Disability in January replaced $100. Go to a food pantry twice a month now, but just can't afford the cigarettes what with the increased taxes on them and prices going up. I mentioned this to our pcp at his physical and asked if there weren't any way to adjust his meds to help him cut down more(eventually get off them). Answer from him "Not really." He also does not believe the newer meds for smoking cessation are acceptable for Dh because of side effects(and he's seen them). Asked the Case manager at his Psych Dr.'s Office. Her advice--lay it on the line. "There's no money for them. There are no more. There will be no more." Then when he tries to go after them, he'll be endangering himself, call the Police and have him taken to the hospital. From there he can go to a NH locked unit because he won't willingly stay. If he blows up at me for it, endangers me, call Police...etc. I will be VaD's agent in triggering all this.
On top of that, my sugar intolerance is now diabetes(found out this month)and am learning all about testing and probably meds., and while I finally found a way to get severely needed dental care for me, am getting the filling and impressions done tomorrow, and face 12 extractions and new denture June 23rd. Dh is affected by Full Moon for about 3 days before through 1-2days after. That's coming up, and daughter is coming for a visit from the 1st through the 7th, with her agenda of stuff to do here.
All a mixture of good stuff and a couple super bummers. Even through my bout with depression I knew I'd get us through. Most of all the above are just a jam up; but I'll get us (me) through. Being the agent to orchestrate Dh's probable move to a NH is really the thing flattening me. I would have very little problem with it if it was because he had a Stroke and was too impaired for me to see to his care here, or some like scenario. Hadn't thought him going to a NH could be so close and to be the one to draw the line; be the trigger, really bothers me. Is there any other way to see it.
Only thing decided in my mind is that I won't pull that trigger until daughter has gone home, unless something else happens.
Is there any other way to see it? Yes there is. He's now a danger to himself and you. Smoking is incredibly difficult to quit -- some studies say that it's harder to quit smoking than it is to quit heroin. An alz patient smoking is a house fire waiting to happen. He's going to be miserable and angry not smoking, or in danger of killing both of you if he does smoke. He will be able to be medicated to take the edge off the withdrawal in a NH. You have now gotten to the point where you have to be focused on your own health, or he will outlive you. With your current health situation, he is too impaired for you to care for him and also be able to save your own life. With a move to the NH, he is getting the care he needs, and you can try to get your health back. You will both be better off with him in the NH.
Remember what I've seen posted here many times -- people wait on average a year too long before the loved one goes to a nursing home. It's time.
Smoking is not one of the things we deal with and I am so glad of that. I remember when I quit smoking "cold turkey." I was the most awful thing to be arround. I tried to pick a fight with my boss and almost got myself fired. It was horrible. Took a long time and real self-determination. I really suffered but so did everyone else around me. I do not envy anyone who is living with someone trying to quit this awful habit. Prayers are with you.
Carol-you have been so strong for so long. It looks like the time is now for placement so you don't die. A life time of battling illness has taken its toll. I hope your daughter's visit is a help and not a further trauma. Daughters sometimes do come on too strong in what they think is help.
Carol, I have read your posts and often thought how strong you have been. I have genuinely marveled at your ability to handle as many obstacles as you do and always with a "can do " attitude. I have come away from reading your posts with a renewed sense of being able to handle things. I am sorry that right now you feel flattened. I do not have any answers but I do have an observation. Although all of us realize we may face the awful realization that placement may be needed at some point, it seems we are really never ready for it. Almost every time someone lets us know that they are at the place that they must consider placement, they are rarely comfortable with the "reason" . Maybe accepting that placement time has come just frankly is never easy no matter what the reason . I want you to know that I will be thinking of you and hoping that your visit with your daughter goes well. I hope that time brings acceptance and most of all I hope you can see that it is time to take care of yourself.
Carosi, It is time to take care of YOU. I am so glad that you are able to get the dental work done, Once you stop having all that mouth pain and discomfort that you are experiencing now you will have a new look on life. However, I do agree with everyone else that is time. I know that is hard, but need to take care of yourself.
Carol, I, too, have read your posts for quite some time now and have been amazed at all you have dealt with, seemingly with good cheer. No question you're one tough cookie, but it does look like all those battles are taking their toll and you need some YOU time to tend to your own health problems. The anger at being deprived of his smokes along with your DH's other problems sounds like a dangerous combination. Please be very, very careful.
As usual, I'm going to be the one trying to find some way that you can keep him home for the moment...
"The pcp .. also does not believe the newer meds for smoking cessation are acceptable for Dh because of side effects(and he's seen them)" .. Are the side effects inevitable? I'd really research all this on the web. If you find something new, your doctor might be willing to put him on a trial. I'm sure there are more than enough "physicians samples" of these things.
I know it's time to think of you but it's also the case that he hasn't done anything new that is wrong, in his eyes or even in yours. As you say, if there were a stroke, then you reconsider. If there is violence, then you reconsider. BUt I know you're limited in how much you'd be able to go visit him if he were placed in a facility, not to mention even more money problems possible.
Another possibility would be to contact the pr department of the tobacco company and see if they have samples to hand out. I know this is crass and totally non-PC, but I bet they do have!! You can also search the web for free cigarettes!!
AND - place a request locally on a freecycle net. Someone here suggested I look for a freecycle site to recycle the binders I'm reclaiming as I clean out my husband's room. I found the local RI one and subscribe to their daily digest of requests. AMazing what people have! Since this is something many people might be trying to get rid of, you might have some luck esp. if he's not picky about brands or if you can fool him by sticking a different brand in his old packages...
Carosi, you have been through so very much, now this. I am so sorry. Don't have any advice other than a lot of NHs allow smoking on screened porch or outside areas. Someone accompanies them to these places. I would think it would be almost impossible for someone with dementia to be able to stop smoking. It was hard enough for me and I only have caregivers dementia! Lots of thoughts and prayers for you and your family as you have to go through this. Take care of you first.
My husband's dementia ALF just went smoke free. I mentioned to the director that I felt it was a cruel thing to do. Her face lit up and she said it went amazingly well. They got the patches for all involved and the smokers buddied up for support. She said it was a total success.
Carosi, Boy do I feel for you. My dh quit using the patch. He smoked for 40 years and I never thought he could ever quit. Worked like a charm. This was just before the diagnosis. Many nh do allow for smoking- but not all. The nh dh is in does not but the one he was temporarily placed in did. Also, I was not yet ready for him to be in a nh but when I fell and broke ribs and could no longer care for him, the VA placed him "temporarily" in a nh till I healed. Once he was there I realized he should have been placed there all along. We had a better relationship. He was not always angry at me. When I look back on it, I think it hurt him that I had to do so much of his personal care. He never wanted to be a burden on me. I promised him the best help I could find him and now I know it is not me. I am ok with that part. After he got moved to the long term care facility, he had some kind of a stroke and now is even more incapacitated than ever. Some times we have to "Let go and let God". My prayers are with you.
Carosi, My heart and thoughts are with you as you try to figure all of this out. Perhaps you can look at it a little less absolutely. Right now, you need to concentrate some efforts on yourself and the best and safest place for your dh might be the NH. That way you can heal and nurture yourself a bit more and, you will continue to be doing the same for dh with help from the nh staff. Many have found that, after an initial adjustment period, their dh is happy and content in the nh and their relationship with their spouse actually improves. On the other hand, there is nothing "written in stone" or permanent about a placement. If, after you have taken the time you need, you are unhappy with the placement, you can change it or bring him back home. I will continue to keep you in my prayers.
He has tried the gum, the patch, etc. The pcp's reservations are because the depression and/or halucinations that he's seen as side effects aren't that rare and definitely don't fit well with his mental problems. He doesn't have the capacity to decide/commit to quiting. Can't afford cigarettes anymore no matter where he is. Even checked with a law office to sue, as advertising played a big role in his decision to smoke,; he can't read and doesn't believe the warnings against it. The law office said the huge class action suit against the companies a few years ago, that they lost and had to pay the states huge money negates suing them. There are no med adjustments to be made to help take him off them.. The patches had no significant effect in helping him. This is where we're at.
For some reason the Web is not down, but email is, or I'd be writing this in an email. carosi and I have been writing to each other every day for over a year now.
You are obviously between a rock and a hard place. I know how hard it is for you to even think about this. carosi's husband is further along in the disease progression than mine is, but not by a lot, still he does need help with enough ALS stuff to qualify for an aid and probably for a nursing home as well. The smoking is extra dangerous because he does it while his caregiver is sleeping because his sleep pattern doesn't involve sleeping all night long. That makes the smoking even more dangerous.
i guess i play the devils advocate on more than one topic but i can see your dilemma carosi. with your own health disabilities and ailments it may indeed be time for placing DH. on the other hand, i feel very sorry that he would be subjected to cold turkey off cigs without a plan for withdrawal. it would only be subjecting you to more hostility as well and surely would be a cruel ordeal for him in his mental state. can you whittle him down to several a day for now and only at certain time/place when supervised? this would be the only way i would agree to wean him down. supervised. with regards to placement, some NH do allow smoking in designated areas. sometimes i feel i should allow my DH some enjoyment out of life too-in the predicament we find ourselves giving a small amount of joy to our spouses who have so very little left of life somehow seems imperative to me..i hope you find a way to satisfy both your eneeds. my best, divvi
Carol, at this stage of his life, how much longer would he live if he gave up cigarettes? My FIL said if he had to give up the foods he loved and had to give up cigarettes, he would rather go ahead and go to Heaven. Could you keylock the doors so that he can't leave the house, and hide the cigarettes at night while you are asleep for safety reasons and still let him smoke a couple during the day, a half a cigarette at a time? A kind of temporary compromise from cold turkey. I know that you said for financial reasons you couldn't afford the cigarettes, and believe me, I am NOT advocating allowing him to smoke to your detriment and his, but quitting cold turkey is impossible for some people - with some, it is more pyschological than just a bad habit. I guess basically I'm saying the same thing Divvi did, but in a different way.
The doctor told my husband he had to quit because of his COPD over a year before he was diagnosed, so he was off of them prior to his AD - after trying to stop four different times before! Once he stayed off for five years, the other times were just a few months. He just couldn't give them up, even with COPD! Now his memory loss has kicked in, and he doesn't remember smoking!!! I was fortunate there. I hope that your husband forgets that he smokes soon too.
Carol, I don't envy you the pain of the dental surgery, but you will be so happy 6 weeks later! We are wearing down emotionally, and your husband and mine are about at the same stage, though mine can't talk, and thankfully is off cigarettes.
I'll keep you and your husband in my prayers. (((HUGS)))
I'm picking myself up and dusting myself off. There may be some scraps and bruises, but I'm beginning to make some plans. At the appropriate times: I'll be filling in our daughter. I'm going to verify with the Dr. and get patches, even though Dh has used them before and claims the don't do anything. Maybe they'll at least help take the edge off. ( Never helped at the hospital). I'm putting freshly updated med list in the emergency packet. I'm keeping a phone at hand. I'm checking on what he'll need, presuming he goes (equipment--because he already has a bunch). and more.
Also, while he does smoke in the night, he only smokes on the enclosed front porch, outdoors, or in the garage. When we married he smoked 12+ cartons per month. It's taken me all this time to whittle him down to 6. In the meantime the price has gone from less than $15 to around $50 per carton. Our income, on the other hand wasn't big to start with and took a major hit this last fall, when my little part time job disappeared. For right now, until our checks come I've hd to cut him to a pack a day. He's having problems with that--emlotionally and physically. The Drs, as I said, explained that he was using this and his coffee to self medicate for his psych problems. His brain is hooked on the nicotine in that capacity, so this isn't just a "habit" problem.
I think all my years of looking at end results and then having to figure out how I could get there--not the way most people do--is paying off. I was never promised things would be easy or fair. I'm just grateful for all the friends here, in my corner.
I never thought I would write this about my situation but there are a few areas where we have been very lucky. It seems that my husband has some inner instinct about what he can and can not do. He was never a heavy drinker but we would sit on the porch on a hot summer night and drink a beer or two. Quite a while before he was diagnosed I noticed that more and more nights he would drink a soft drink instead. First thing I know, he had completely quit drinking and I hadn't even realized it. Driving was another. I told him that I would be the first to let him know when I thought he couldn't drive any more but in the mean time, anytime that he didn't want to drive, just go to the passenger seat and I would do it. Little by little he started going to the passenger seat. First thing I know, it had been months since he had driven and now it has been a couple of years. Cigarettes, same thing. He has very little motor skills in his hands. Wasn't too far into his diagnoses that he could not work the lighter so he would put a cigarette in his mouth when he wanted one and I would light it. That cut him down a lot. After a while, even after I lit them he would take a puff or two and put it out. Then he couldn't figure out how to put them out. That cut him down more. Now he can't even figure out how to smoke them. Suddenly, it has been months since he had a cigarette but he did it all himself. Maybe God does really take care of fools, children and dementia patients.
ehamilton, thank you for sharing that! Carol, we'll be optimists and hope that for you too! It looks like you have your plan in place and I'll have you in my thoughts and prayers.
Just for a laugh. My sil was in hospice but smoked all her adult life. She was in the end stage of her life but wanted to smoke. Had oxygen so this was not possible but someone took apart a pen and put the wider middle part in her mouth. She smoked it just like a cigatette!! Accepted this as a cigarette and was happy!!
Kathryn, I have a similar story...my mother in law was a chain smoker for many years and when she was in the last day of her life and we sat vigil at her bedside, my husband poked me and said, "watch Mom's hand...." Sure enough she lifted her hand and put it to her mouth just as if she had a cigarette and she would inhale and blow it out. Unbelievable..
Sincerely doubt it. Besides, you have to buy those too.
Small update: Asked the nurse at psych Dr.s to find out the range of adjustment I can apply to his meds for tremor and for stress management, and to get new Rxs to accomodate added doses. This could help modify the stress and side effects to the limits he's now under and maybe reduce the intensity of his response when the cigarettes are cut out. I hope.
There is drug research going on that nicotine may be effective in some disorders like AD, ADHD, Autism, Schizophrenia and improve attention and concentration. You may want to see if your doctor will prescribe nicotine. As others have mentioned, if the person with AD is too forgetful and it would be too dangerous for them to smoke. Taking nicotine would be a good alternative. Below is a link to a new release about a study conducted by the National Institute on Aging.
http://www.medscape.com/viewarticle/589458
My DH quick smoking years ago and when he heard of this research around 4 years ago, he talked to his neurologist who was familiar with this line of research. So DH was prescribed nicotine. However, DH felt the nicotine helped his concentration more quickly if he smoked. The neurologist agreed that the nicotine would be delivered more quickly to the brain by smoking. DH only smokes a few cigarettes a day.
Referring to the end of my original post here--the safety is off. DH took off this am, about 7, and went to the cigarette store (they don't open until 9). I heard him here when I woke up at 6:47. I was gonna sleep in today--until 8, only day I can. Have a double alarm but after the first went off at 6:50, I couldnt go back to sleep so got up. Didn't realize at first anything was different, but animals were acting odd, the curtains were open and so was the front entry door. I knew once I saw his empty bed, where he'd headed. Called the Police and asked for help-- explaining. They sent an Officer who checked one of the two possible places I figured he was headed for on the way to talk to me. He got more detail and I gave two pictures. He went to the other site and found DH standing outside (resting) with his purchases. TALKED to him on the way home. He had a hard time climbing out of the cruiser. If he'd tried to walk home, I really think he might have collapsed before he got here. He'd waited a long while for the store to open, yet was still wornout. DH's 'visiting' sister bought his aircompressor and tools from him and paid him the bulk of the money yesterday. He insisted then on heading to the cigarette store (walking) but she headed him off by driving him up there. He says he went today because he was afraid the price would go up, and it did. (Only because he bought 2 cartons of off brand cigarettes as opposed to 1 little box of cigarette size cigars.) Anyway, the Officer talked to him. I told him flat out, that if he does this again, he will be picked up and taken to the hospital. It is my job to keep him safe and he has to do this.
Now we see.
Yes his family has been informed. Extra locks to keep him here are a questionable option because my own disability (ability to make them work) would then be a potential problem for our safety. Also locking him in could trigger him turning on me. I keep a phone on me or within reach at all times. As I said before--never expected to be the one drawing the line, be the trigger. Now the safety's off.
Hang on, carosi. We're here for you. Can you put some kind of alarm on the exit doors that would wake you if he left the house? (Assuming he would not know how to disable it).
alarms would sound but with her own disabiltiy i doubt she could keep him from leaving if he wanted to. if deadbolts are not feasible and the doors are not secured, then he will more than likely try this again, carosi. he is at risk running the streets alone and it maybe time to start thinking the dread words- facility. sorry you are dealing with this carosi hugs. divvi
I know. Thought it'd be a big Stroke or the like that put him in a NH. Looks very possible that it'll be his own behavior crossing lines I've had to set. Crap!