We've had a really rough time here since the next to the last night on the cruise. Sometimes I think Alzheimer's Disease just asks too much of us - both caregiver and patient alike. I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. Post comments here.
I have found with my husband that transitions are difficult. On a recent cruise, he had trouble for the first few days, afterward, going through security is difficult as is keeping track of his carry on bag. When we got home, after about three days he told me he knew we went on a cruise, but had no memories of it. I did loose him twice on the ship. Once, he got off the elevator because he thought it was too crowded and off we went. The other time I told him to go sit with our friends in the theater while I found a restroom. Eventually, he came back, but I had no idea where he went and he was not talking. Our very dear friends really helped with him on the cruise, but I think it was our last. My DH loves being home, so coming home and being home is good for him. I hope things calm down there.
The reason we weren't on the cruise is that my husband could not handle all of the traveling.
Joan, is it time to place him? You are dealing with spousal abuse. It isn't just the disease talking. And your social worker has told you that. If the drugs don't work, make sure they know what is going on.
Joan, I am so sorry you had to listen and go through all of that. I am often upset with the comment that it is just the disease with the implied "so we have to ignore it and forgive them" attitude. Sometimes, I think that people forget that I am human too and loosing the person I love and have shared my life with for years. He doesn't know what he is doing or understand so it is not bothering him that much.
A wise doctor told me that there wasn't a whole lot that they could do about the disease medically at this point, however, there were medications that could be used to help handle the affects of the disease. Good luck with the Risperdal, hopefully that will help you.
oh Joan , i`m so sorry you had to go through that, I was taking my dh home for a visit in 07, we were flying home to visit kids, lived in Az. for 2 years, the layover was long and he got frustrated wanted the tickets so he could harass the girl at the gate, i wouldn`t give it to him so he tried to lock me in a bathroom, he said he needed to go to the bathroom, once i got him there he shoved me in, someone came buy and helped me. I will never take him anywhere again. again I`m so sorry that happened to you, and yes it is abuse no one deserves to be treated that way.
This is what is so strange about this disease. When I write about the rages, it appears that he is so much farther along than he is. He has no problems with ADL's; no problems recognizing people or what objects are used for. He appears normal to outsiders. His problems were all in the short term memory and language confusion and processing areas. Now it is spreading to the impulse control and rages, which are becoming noticeable (how could they not?) to outsiders. When it is happening, he sees nothing wrong with what he is doing. He USED to be horrified and apologetic at his behavior after the fact, but now he only kind of understands that what he did was completely inappropriate.
Joan how dreadful you have gone thru this. you plain just have waited wayyy too long to administer the drugs you need to keep him reasonably manageable. in my own opinion, the time has come you must recognise that he is deteriorating even though you dont see the exterior changes as much, interiorand mentally he is advancing. sounds like FTD rages/ i truly believe although neuro said my DH has VasAD/and/combo AD i firmly believe he also has FTD as well. the similarities of others here describing the antics fit him to a tee in early stages. no empathy whatsoever and always ME!-ME! it was all that mattered. the tiranny of the hateful remarks i do believe they have some control over it -just chose not to- as they indulge on the rants of belittling us down. you have suffered more than most with the issues at hand and i sure hope you have seen the light that the pharmaceuticals are now a must. if you dont get him managed now for the long haul ahead, something could happen that could make you have to take the plunge of having to call 911 for intervention. it can happen that fast. the rages seem to escalate without drug control. i am so sorry your cruise had those sorry moments. you may want to rethink taking him along on another. i cant tell you how many plans i made for us then cancelled at the last minute due to his acting out. know that we care and all hope his charades can come under control soon. good luck with risperdal =if you dont see positive results maybe a higher dose will be necessary. or another option..take care, joan we all need you to be ok. Divvi
Joan-let me echo what the others have said. It's time for drugs. Things will only get worse and you know it. Lie and tell Sid it is a new memory drug, sleeping pill, vitamin-aphrodisiac-anything that might work. Welcome to our sisterhood of hell (brotherhood, too)
Sunshyne, i am considering editing my post above as i feel i may have overindulged my opinions to poor Joan. but dont want you to get excited!! haha..sorry joan, but when someone as sweet and hardworking for everyone else like you, gets slammed chastised and humilated in public, i feel i have to let off some steam in your defense.. i am that way. pardon my dust? divvi
divvi, it's only when you wipe out everything that we get excited. A little judicious editing isn't ever even noticed. You might just have been fixing grammar or spelling, after all.
Although I don't know if you need to edit your post. I imagine poor Joan has already been thinking the same thing. It must be dreadful to be on the receiving end.
Joang, you are now in the real dementia tunnel. Risperdal is potent, but it does work on agression and inappropriate behavior. Unfortunately, I learned this much too late. It was miserable to live with DH for quite some time. I am thankful that he is now quiet and so much easier to handle. Although I would never take him on an extended trip again. Much to much history with problems and embarassment. Hang in there....M
Oh Joan, I can really relate. I used to ask my husband for an apology. But this last time, I told him, I used to ask you to apologize, and you understood you were really hateful & you were remorseful, but I don't think you can be anymore. The slightest thing out of the blue to enrage him, with no connection to anything. It doesn't happen often, but when it does.....
People advised me on the last episode to have a bag packed, etc. My problem was that I live in the city. The center of the block was "free parking" when the "tourists" came to visit all the restaurants withing walking distance. Someone bought the building that was attached to the lot, & towed a lot of neighbors. I couldn't leave & drive during the last outburst since parking spaces are like gold, and if I lost mine, I might have to park blocks away. Very dangerous in this neck of the woods. I carry a mace gun, but still.
So, I have since (last week) found the owner of the lot, and have arranged for a lease for a parking spot from 5 pm to 9 am. $50 per month (a bargain), but my husband put up all sorts of barriers. "Why do you need to park there? What's wrong with riding around the block 5 times? So what if you have to park 4 or 5 blocks away? You can call me & I'll move my car, etc. etc." Well, he falls asleep at 8:30 & doesn't hear the phone. And what the heck is $50 for my safety and convenience if I'm paying for it. You would have thought I was asking for a villa in Italy. What does this have to do with him? A neighbor to my right was stabbed sitting on her front porch, and to my left one was robbed getting out of her car. PLEASE.
He seems to have no concern for my well being. At any rate, now I will have a parking spot, and if he gets out of control in the future, I can get in my car & leave. I couldn't the last episode because I would have lost my parking spot.
I hope the drugs work for you Joan. I know all too well the feeling of having a spouse come down on you who would never have before. I try my best to think "it is the brain damage, not him." But I just don't deserve it. I am a very loving compassionate person. It hurts that I have to distance myself from him, but I have to put up emotional barriers to survive what might be the next "episode."
As you know, my husband doesn't have AD, but I have the same hell as all.
If the Risperdal doesn't work, I think you will have to consider alternatives. How much can you take?
Joan, I feel so badly for you. It's hard for me to imagine what it feels like when a formerly loving spouse turns his rage against the person who loves him the most in this world and is sacrificing her own life for his well being, to boot! The closest we have come to this was right after dx, when I was overwhelmed and let my husband know it (foolishly). He told me that "I made my own stress". I quickly realized that not only did he not have any empathy for me, but also no insight into his own situation. Fortunately, I adjusted and things have improved. As the others have said, it's good that you are starting him on the drug before a crisis happens.
I picture the brain as a computer running a huge system. The Dementia is a virus cluster demollishing the programs and connections. The core is still there, as are the files, folders, and documents. As the virus rips through the connections, functions are disrupted and destroyed in increments. That said: Our loved one is still inside, slowly cut off from the rest of the world. For this reason, as it is happening our LO struggles to hang on; the virus disconnects him and causes havoc in his outward behavior--it is not him. It is the disease. Blessedly, the disease also eventually disconnects him from knowing what's happening to him. This explanation also allows for the flashes of his "old self" we see, and the glimmers toward the end. Last bits of connection find their way through.
NOW---Because it is the disease we are dealing with, in order to help our LOs, we need to use the meds at strengths needed to give our LOs peace. They don't need the anger either. I believe some have even acknowledged that their behavior happens and they can't stop it. That's AD. The meds are vital to dealing with this disease humanely.
carosi, well said. If only I could get my husband to go to a doctor, but he believes "nothing is wrong with him." Sometimes I just get fed up with (in my case) it is the brain damage, not him. (He doesn't have AD.)
I am so sorry that you are having to experience this pain and hurt. My husband looks fine to everyone else, is able to take care of himself, do work around here, etc. He just has the same type rage and explosive episodes that you described. I never know what will set them off. I wanted to go on that cruise, but I knew that it would be a living hell getting him there. He tries to jump out of the car, has to tell everyone what he thinks and how to do their business. He is very abrasive and embarrassing - not to mention having to endure the verbal abuse. Our last episode was December 15 when all of you helped me through it. He has never raised a hand to me - has always been a perfect gentleman - but he has pushed me to the floor on two different times. I was two rooms away and all of a sudden he showed up and pushed me to the down and he was filled with fury.
The doctor put him on Depakote and he seems to be in a lot better mood. I am going to ask about the difference between Risperdal and Depakote for this behavior. The doctor also suggested Zyprexia. I know that Risperdal and Zyprexia are for psychotic behavior - but am new to this for AD outbursts. Hang in there - we all love you and understand the hurt and humiliation. That doesn't go away. Thanks for sharing.
We used zyprexa when DH started his rants and became aggressive yrs ago. i didnt have to use it but four months and practically a childs dose knocked him like a zombie and he slept alot thru that period. it was better than having him threaten or become abusive and i wouldnt hesitate to do it again-. i was scared to turn my back on him at times. after the 4mos he seemd to turn the corner into another phase where he mellowed out on the namenda/razadyne combo so it wasnt needed anymore-. bottom line is use anthing- med/combo you need to get them calm and manageable or things can turn nasty too late. divvi
Joan, I can add little to what has been said, but since I was one of the original ones to join your group, I feel a special kinship with you and I am so sorry that you have to go through this. Your site keeps us all sane, and your troubles become our worries. DickS
My husband has not become aggressive with me but he can be scary with other people. We had a man come to the house the other day just to ask if he could deliver flowers for my neighbor (as no one was home). My husband was very rude and hostile toward this man. Nothing like how he was in the past. I do have risperdal for when he does become agitated. It does calm him down. His neuro gave it to me and said I was to give it to him as needed or daily. He originally gave it to me because we went on a trip to Arizona in October and I was worried about the change. As my husband has FTD, I have been told by the neuro and his neuropsychologist that I am to call immediately if any of his behaviors are hard for me to handle and they will give me medications for them. Do not be afraid to use meds to keep yourself safe. I intend to use whatever is necessary so I can keep him home with me.
joan, i might add this just in case as well. since your issues with Sid stem mainly from driving- i had a horrible incidence happen to me while driving- as DH was always in the front seat strapped in his seatbelt. all of a sudden he grabbed at the wheel while i was on freeway at 70mph! talk about scared out the kazoo. i pleaded like crazy to take his hand off but the monumental strength they possess is unbelievable when they become excited. well long story short he did remove it but only after i manueved to the shoulder of the road out of traffic. from then on for safety i had to put him in the backseat with childlocks at all times and buckled tightly in so he cant 'reach ' me over the seat if he decides to ever pull that again. he also opened his door on freeway and tried to jumpout to 'go home'. others have had this happen here as well i believe. so take heed with his intensity over driving and your behind the wheel dont trust that he wouldnt be able to pull one of these tricks as well - just a thought, i know he would be livid at this point if you suggested he ride in the back? but i said i want people to think i am your chaffeur-well that worked he was always uppity anyway! hahah. gosh i hope you think bout it at some point? divvi
divvi - I can see that situation about the steering wheel happening. It has not happened to me yet, but one day I was driving a short distance in rural area and dh got upset about something and was yelling at me. The thought crossed my mind then that he could conceivable grab the wheel and cause us to have an accident. I decided since then if he showed signs of being upset I would pull over and stop. I could no way put him in the backseat now.
be careful then, imohr or anyone else with them in the front seat. its a split second and you wont see if coming. i am a very strong lady and trying to manuever a vehicle with a locked wheel is quite the challenge- like joan says it bubbles under the surface til they erupt and you may not get notice like i did not. i know how hard that can be, its just one more thing we have to contend with when riding them in a vehicle! but you tell them safety comes first and thats that! if you want to GO with me, you ride in the back. period no ifs/ands/butts//you just have to call the shots and if they dont like it tuff. they stay home. they will eventually agree-the more i remember 'stuff' that i went thru those many yrs ago, and combine that with issues today, i really see the big picture. this AD road is a test of the caregivers sanity capabilities. Divvi
One time we were on glare ice roads. He was freaked out because of the roads and weather. He went to grab the wheel....I NEVER have raised my voice to him in 17 years or show anger toward him. Well it has become my ace in the hole. I said.."You let go of the wheel now or so help me!" He did and he ranted all the way home. When we got up to the house he said..."good job driving!" : )
It seems at times they are just as dangerous in the passengers seat as they are in the drivers. I refuse ever to dive out of town with Tom. If we have to I find a driver. He's not like that with others. He thinks it but doesn't dare say anything.
Joan, Have you considered that there may be some deeper issues beneath the driving rage. It sounds like your DH may not want you to be away from him. I have noticed with my husband he has a great deal of anxiety if I am away from him more than an hour or two. He never expresses it, but I see him sitting with the phone in his hand when I return. He even called me at the hairdresser the other day to ask me a question. Maybe, if you are busy, you could arrange some kind of driver or companion to take your husband places. He may not like that idea, but if presented to him carefully by someone other than you it could work.
Divvi, "this AD road is a test of caregivers sanity, capabilities" Wow, how many times have I thought that. There are really very few other situations that I can think of that could impact one's life like this--I call it a test of strength. The thing is, those of us on these boards really are the strong, sane ones (I think). We put our LO's first and try to take care of them as best we can. I wonder about those poor souls whose caregivers just can't take it, what happens? I bet some of the spouses pack a bag and leave for good when the going gets rough.
We have many fine contributors on this board who have packed their bags for various reason, to protect their own mental health, to protect their own physical health, to protect their financial situation, for physical safety and for the safety of their children.
We can never judge to road each one has to walk or the decisions they have to make because if this board has taught us anything, every road is different.
Catherine, I am sorry if I said something that hit a raw nerve. Of course, no one should be in danger, nor jeopardize their physical or mental health, or financial situation. My comment was really about wondering what happens to someone with dementia when the caregiver leaves because they just can't handle the responsibility. I am in awe of the level of dedication shown by the spouses on this board, and have wept at times reading their posts. As for judging others--it would be a wonderful world if no one ever judged another, but like most people, I'm human and a little of that invariably creeps in. If you are able to be totally non-judgmental, all the time, then you are a better woman than I!
This "bubbling under the surface" - does this mean that they mask the rage they feel all the time and then every so often it breaks through? Or does it mean that something triggers them to go into a rage. For example, every once in awhile, my husband's rage breaks through that I'm not taking care of him at home, and he can act it out with severe consequences to everyone, trying to make me change my mind. (I can't take care of him at home because of my physical limitations, and he fired every one I brought in to help.) Or does it mean that every once in awhile, things get mixed up in his mind, which leads to rage. The more I read on this site, the more I wonder if he doesn't have some frontal lobe damage: his diagnosis is Alzheimer's but his behaviour sounds a lot like those with frontal lobe problems ( sorry, I forget the term for it.
Joang--I am so sorry you are going through this. My DH does not do any of these things. However, my brother does. His wife left him several years ago and he is completely estranged from both of his children. Therefore, as his only other relative, I'm it. I guess I enabled him for many years but after DH was dx w/AD, I told him I didn't have time, energy or the desire to listen to his temper tantrums any longer. He hasn't acted like you described since.
I don't think my brother has AD. I think it's just bad temper and verbal abuse. I don't know where the line is between them not being able to control it or not. I know the AD patient has no real control but walking on egg shells is no fun.
Perhaps I'm being naive but what would happen if you were to snap back "Don't speak to me that way ever again!" Have you ever tried it? Am I being guilty of trying to second guess another spouses pain? Forgive me if I am causing more pain. I was just wondering.
maryd, you may be right joan's DH might not want to be away from her, given the idea that he thought she would be working more and out of sight. He may be going into another stage and be very uncomfortable with being by himself. I know that my DH will tear up if he thinks I am not available to him when he wants me or he thinks I am late in picking him up from the day center, although I am always a little early or exactly on time.
In our household my dh gets upset and verbal if I plan to go somewhere without him. He thinks I am meeting another man and not coming home. He hasn't been as verbal as Sid seems to be but it us mainly the only time, so far for him to visibly get upset with me.
On the ship this seemed to be what was happening with Sid. He was worried Joang would be leaving him alone, starting on a new career, and he is scared of being left alone. She said he was formerly a "people person" and enjoyed being center of attention. Now he can't hold his audience attention with funny jokes and people skills. If I were in Joang's place my dh would definitely "lose it all". I could see him getting physical with rages. Differences in my case would be dh has always been jealous of me and not wanting me to "lead my own life". He always objected to me taking the lead in something that did not involve him, even if he was not interested in being involved. If Joan were to "do what I have done and given in to his interest, he may well be as docile as my dh is". I don't think what I have done by giving in to his wishes have been fair to me or emotionally good for me.
I think he will have to be medicated to overcome this and for Joang to go forward with her career. I think it is important for everyone to have some of their own desires and ambitions to fulfill themselves beside the fact that she is now the breadwinner in their familly.
Joang, I surely wish you the best going forward with your career and I think it is important that you do so, but I think Sid would prefer you devote all your time to his interests (like my dh).
I am surely a poor one to be offering advice and have no expertise in doing so, but the similarities in our cases seem to be evident to me. I hope you continue to have the strength to go forward with your plans and career.
Just a quick mention about the driving issue... My Dh likes to sit in the back seat with the dog sometimes. When we go to our children's homes and the dog comes, he'll sit back there and keep him "company". I push the front all the way up, so he has plenty of leg room, and I find that in the back seat he's much less involved with my driving. If there's any way for you to get that accomplished, especially on a trip of an hour or so, do it. It really helps.
Thank you all for you support and input. The hardest thing for Sid is that except for his short term memory and problems with slow processing and understanding information and directions, which he admits are problems, he has absolutely no understanding that there is anything else wrong. Well, that makes sense. How could anyone KNOW that their reasoning is way off base? How could anyone KNOW that screaming rages and verbal abuse are inappropriate when they are in the middle of them? I describe it as brain swelling. It's like Alzheimer's blows up in his brain, and while it is happening, his brain is so swollen, he cannot be reasoned with, talked to, or calmed. Nothing works except time. I have to wait until the next day, and it is as if the swelling has then subsided, and he can be talked to somewhat. It takes a lot of experience in knowing how he responds to which words to do it, but he then kind of understands that what he did was wrong. Although lately, that understanding is less and less.
He acts and appears completely normal to everyone - he is fully aware of everything going on around him and in the world. He can hold a coherent conversation, although has a problem with the "off" switch.
As for the driving, which is what generally triggers all the rage, it is the loss of freedom that upsets him. The fact that he is being "treated like a child", and cannot pick up and come and go as he pleases as he has always done is what is killing him. I fully understand that, although he doesn't think I do. He feels "worthless" because he is now unable to help me by doing all of my errands and shopping, which puts a massive burden on me, because of all the other work I have to do. That really tears him to pieces. And I understand that, although he doesn't think I do. And let's be realistic - would I have tortured myself by taking away my shopper and errand runner if I didn't think it was absolutely necessary? He doesn't like doing the other chores I have for him around the house, because he wants to be out do the driving chores.
For 36 years, he was a workaholic, and I allowed it because he loved his job and there was no way to change his nature anyway. As time went on, my career in education became more lucrative, and the idea was for him to slow down, and me to pick up the monetary slack. Then he lost his job; I was forced to retire due to a new license issue relative to the NCLB Act, and we moved to Florida. 2 1/2 years of trying to adjust to AD and running from one doctor to another without me bringing in any money has depleted our finances, so I absolutely need to work by writing and public speaking. And whatever else I can do. So yes, those of you who suggested he is afraid of me being away are correct, BUT he is only upset because he will be a "prisoner" in the house when I am out speaking or doing whatever I'm going to be doing. If he was driving and could get around, my being away would not bother him. Well, it would, as in he would be lonesome, but it wouldn't trigger rages and hysteria. And I can understand that too. He cannot just sit in the house without being able to go anywhere while I am out working.
Oh, and he goes completely nuts when he hears about 80+ year old Alzheimer's patients driving and getting lost. "Why can they drive, and I can't? I'm nowhere near as advanced as they are!" Well, the point is - those people shouldn't be driving.
So anyway, things are calm now. He is taking the Risperdal. One day at a time.
forgive if I missed this answer along the way, but is Sid's form of dementia all AD? He sounds so clear, yet because he is angry as you describe I wondered, does he have a vascular component or FTD as well?
Also, I wondered how Sid responds to companionship when someone other than you is available to him. I don't know how far, or how long your speaking engagements take you, but sure would be great if you were able to reign in a friend or relative to do an outting with Sid to coincide with the time you are away.
Since he has diabetes, severe neuropathy, and vascular problems in his legs, AND the impulse control issue, yes, vascular components and FTD have occurred to me. I am going to ask the neurologist - we have an appointment on March 4th.
WOW, so much to fear in my future. I hope I can be as strong as you Joan. Right now I feel scared, weak and ill prepared. We see the neurologist tomorrow to hear the results of the PET Scan. We both fear the future. He snaps at me like he never used to, is VERY upset about having to give up his driving and is content to stay home most of the time. He has done a few dangerous things which have led me to staying home full time with him. This seems to make him feel more secure. He gets stressed when I say we can't afford something, but quickly forgets. We can no longer drive to Massachusetts to stay with our best friends, he becomes unbelievably anxious. Just going to our daughter's house, six minutes away, is only ok for a little while, then he is anxious and wants to go home. He likes shopping, especially for groceries, but it costs me double if he comes, lol. Aghhhhh! Thanks again for letting me vent. I do not know where I would be without this site.
Jim's wife, every AD patient is different. MOST of them never develop the severe behavioral problems. Quite a few never develop incontinence.
Plus, lots of our members are dealing with FTD, or vascular dementia, or Lewy body ... and each of those has its own set of likely symptoms which differ from AD.
So try not to worry about what might happen. Plan, yes, but fear, no. Focus on now. What will come will come, but don't waste your time and energy and emotions on "what if".
Sunshyne, you're so comforting. Those words give some of us hope that we won't have to go through the whole thing and if we do, at least you've given us some time to think we may not.
Joan, reading your blog today.... I thought to myself, she's losing her patience over small things because she held it together so well during the big double meltdown. I don't mean your getting back, just that we can hold it together just so long. Sometimes, when DH asks me a question, and again, and again.... I have to laugh. and he realized he just asked, and it somehow breaks the tension. but sometimes, we just have to snap at them, and then apologize. OK, I'm sorry, but I sometimes get impatient..... the end. don't beat yourself up over it.
Joan, I know just what you're going thru. Sometimes I want to scream (and sometimes I do!!) I know they can't help it but it does drive us completely nuts, doesn't it?
I haven't figured out what is going on with Art. He isn't repeating as much and at times, even ask if he already told me something. I am trying to figure out if maybe most of his short term memory loss was due to depression. Time will tell.
Last night he wanted to cuddle - i usually avoid going to bed at the same time hoping he will be asleep. I started to tell ask 'do you know ....' when he said 'I know, all the years you wanted it and I wouldn't.' He rolled over and eventually went to sleep. I felt bad cause I have wanted cuddling and loving for years. My other problem with him cuddling is I feel smothered - trapped. I think this goes back to childhood but if he had not pulled away all these years, I would be more open to his affection.