Hello everyone......... When I read the "Welcome" message, to this site, I became very tearful........I kept saying..."that is me, that is me!". I am almost 64 yrs old.....my husband, my "DH" is 68. I started noticing memory issues when DH was around 62. He had recently lost his job, had found some PT work here and there, but just wasn't making anything work. Around that time I made him go for a complete physical. I expressed my concern regarding his memory issue to his doctor. She gave us a referral to see a Neurologist in our area. We didn't get to the Neurologist for almost a year because as a result of the physical, it was discovered that my DH had Colon Cancer. He ended up having 2 surgeries to remove the cancer, but also ended up having more than half of his colon removed. My DH smokes about a pack of cigs a day, and, has a result has numerous medical issues. I eventually got him to a Neurologist who prescribed him Aircept but would never say that my DH had dementia of any kind. Needless to say, I found another Neurologist, who did give us the diagnosis of "MILD COGNITIVE DISORDER." That was in April of 2012. In addition to the Aricept, the new doctor also prescribed Namenda.........so now my DH is taking 2 Alzheimers medications along with numerous other Rx's for various other issues. So, with this "MILD COGNITIVE DISORDER" I have become a total wreck!! After 6 years, needless to say, my DH has gotten progressively worse in so many ways. He has been going on the internet and has been printing out pics of half naked girls. Yep....at one time he had pinups on a metal cabinet in the garage...I told him I found it offensive to me and would he take them down......he did.......but then he plastered his bulletin board in his "airplane model room" with the pics he printed and had meticulously cut out!! He is also constantly looking up dating websites, porn and other stuff too upsetting to mention. I have asked him not to do it...but.....he just keeps on doing it.......it's like he never heard a word I said. I have put a porn blocker on the computer, and he can't get to most of the sites, but the fact that he is trying to is very upsetting to me. It is like having a 15yr old boy! I have finally given up voicing my displeasure......it's funny...when I fuss with him he gets very sad...but boom! Next day he is at it again. He is still driving locally. I have to go with him to each and every doctor's appt because he forgets what they say, doesn't know the answers to questions, and can't find the offices...no matter how many times we have been there....oh..and I have to be there so he doesn't say offensive things to the nurses. I usually have to take off work for these appts and always have him meet me at the local Safeway and we go from there. Sometimes he can't find the Safeway and has to call me to find out where it is. My DH, had worked for Staples, PT, for five years, until last April he was fired for stealing food items...after repeated warnings. He came home one day and said he was fired, but didn't know why. So I went to Staples and talked to his boss. His boss was very sorry, he said he really liked m DH, but he just couldn't overlook the stealing anymore. I totally understood. So my DH hasn't worked since. He gets SS, but that is it. I am totally responsible for everything else. I have had to take away his check book, his debit card, credit card....bc he just spends money without thinking about it. I give a certain amount of cash and when that is gone, I give him more for whatever it is he needs. I take care of the bills, taxes, cleaning, cooking, keep my DH's meds straight...he doesn't know what he takes or why.... My DH helps with nothing..........I have come to resent him. I have a few very good female friends, but am lonely for intelligent male companionship. I am tired and like others, I have felt guilty wishing he would just die so I can get on with my life. With all this said I love my DH...he just isn't the person I married..and I don't feel physically attracted to him anymore...sigh.......... Despite everything there is not a day that goes by that he doesn't tell me I'm pretty, that I look nice and that he loves me. We have an appt with the Neurologist next week...don't think he will say anything new...I wish I knew what was coming and how fast were were going to get there. God keeps me grounded...he has a plan...and does things in his own time. I have to keep that thought otherwise I think I would really lose it. But still I wish I could be where I want to be instead of where God says I belong. Sorry I was so long-winded...I don't even think I said it all. I am grateful for this website and hope to find many friends and support here.
Hi Ferggie, welcome to this WONDERFUL website...I could not have made it this far in the journey without it! There are many topics on our DH's fascination with sex so you know you're not alone. As I've told many other newcomers who have this problem, I dealth with it for 2.5-3 years! Internet porn, constant masturbation, wanting to (and sometimes succeeding) to touch women, dating websites, you name it! The dangerous thing was that he was using our credit card to purchase his porn but not paying the bills, so the creidt card companies canceled our joint card and all of the cards in his name only. Unfortunately because I was working full time and traveling 2 weeks/month, I found out too late about the unpaid bills and cancelled credit cards. When they are in this hypersexual phase it is very important he is not left alone with any minors because you cannot trust what he might do. Assault is still considered assault even if the person has dementia, so be very careful.
My husband too was fired from a series of jobs that he should have been able to perform without any problems. It truly was one of the beginning signs that something was wrong but he always denied that anything was wrong and that it was his lousy managers. They do get to a stage where they can't determine right/wrong and that often leads to shoplifting. I watch my husband very carefully when we go out to a store but you can't keep an eye out constantly, so I have him empty his pockets before we leave so he doesn't get arrested for shoplifting.
Feel free to post-this is a very understanding and supportive group. I doubt there's anything you'll experience that one of us hasn't already been through and can offer advice.
Welcome to my website. When you said you read the "Welcome" message to this site, I am assuming you meant the one at the top of the home page (www.thealzheimerspouse.com). I know there is a lot of information in that section to absorb, but I would highly recommend starting with "Understanding the Dementia Experience" by Jennifer Ghent Fuller. There is a link in that Welcome message or you can just look on the left side of the website, and scroll down to the box with the woman in the life jacket holding a "Help" sign.
Since your husband is considered "Early Onset Dementia" - before age 65, you may want to check out the sections on EOAD, also on the left side. Just about every resource you could need is on that left side. Also, you can go to the top of this page, click search, type in a subject, make sure the "topic" circle is filled in, and click "search" again. All the discussions on that topic will come up.
I can assure you that everything you are feeling has been written about in my blogs - click "previous blogs" on the top left of the home page, and my blog archives will come up by year. Or, use the search feature, type in a topic, and the blogs dealing with that topic will come up.
I am not a doctor, but I am an Alzheimer Spouse who has been through the wringer, and based upon what you are saying, it would be my opinion, and just my opinion, that your husband is beyond the Mild Cognitve Disorder", and into Alzheimer's Disease or some other dementia.
I started this website in 2007 because I couldn't find anyone who would talk about how I felt - I thought I was the only one feeling the way I did about what Alzheimer's Disease was doing to my marriage. I needed a place that dealt with my unique issues as a spouse of an Alzheimer patient. This site is now a place of comfort for spouses/partners who are trying to cope with the Alzheimer's/dementia of their husband/wife/partner. The issues we face in dealing with a spouse/partner with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse/partner.
Welcome aboard! Sorry you have to be here but then we all are. I know some of their behaviour is shocking but he isn't a fifteen year old boy. He's a fifteen year old mentally handicapped boy. This is not like a drunk who says what they think in their stupor. This is serious mental breakdown because Alzheimer's is randomly pulling wires out. Some become abusive including the women. Some do strange things. His ability to use a computer will pass too soon and these particular behaviours will end. I feel for you. We all go through our own horrors in this disease.
Ferggie, welcome. So sorry you have to be here but it's the best place to find answers, comfort, hugs and many, many other things! Please e-mail, fax, or get a letter to his doctor BEFORE the appointment, outlining his current behaviors. Tell him you need help in controlling these impulses. The doctor needs to know this before the appointment. I do this with every appointment my DH has.
Keep reading, learning, venting, ranting - whatever you need -we are here for you.
Welcome, Ferggie. I know you'll find answers to questions here, an empathetic ear (eye as we read). Everything, and more, you've mentioned has been discussed here, I think. Choose a key word and search discussions. I'm sorry for all of us who struggle through, but this is a great place to share and be understood. Behaviors change; so what you think you can't endure any longer will stop, change sometimes for better; sometimes not. Breath deep, count to 10 and carry on....blessings for the journey.
Welcome Ferggie, What you are going through and the feelings associated with it are all too normal. My DH was diagnosed in 2008 but I noticed symptoms back in 2006. The earliest symptom was his loss of wanting to get involved in anything and lost interest in things that he used to enjoy. Although my husband has not had any of the sexual behaviors you describe, he is unable to do many of the activities of daily living without help. I am going Monday got a placement assessment. After much soul searching, I have made the decision to place him, as I do believe he will get more comprehensive care than what I can give him. I have learned a lot about myself through this journey--one of the most important is that I deserve some happiness. I cannot change what has happened to him but I can decide to be happy and try to make some of my dreams come true despite this illness. My best to you.
Ferggie - you also need to consider taking the keys away. At the very least no driving unless you are with him so you can assess his driving skills. My husband drove until last summer - then took the passenger seat saying he had to get use to it. He did drive the motorhome most of the way in October from Washington state down to Nevada, but has not driven since. His neurologist left it up to me since he never drove without me. He too could not find his way around. That send flags up as to their ability to remember driving skills. Others will tell you their driving nightmares.
As for the sex - my husband lost that ability years ago (he is 65). Now even touching me sexually is foreign to him.
Someone else just joined recently that has the same problems with their AD spouse.
Thank you all for your kind words & support! I am beyond relieved to have found this site. Vickie, I am sending an email off today to his Neurologist. My DH's primary doctor thinks he is far more than "Mild Cognitive", but these Neurologist, from what I have heard, take forever to actually diagnose a pt with AlZ. As far as taking away the keys....that is a work in progress and one that I know has to be dealt with soon. Admin...thank you for the info, I will check it out!! Another thing my DH does, which is funny in a way...he is always commening on what the women on the news are wearing...he will say, I really like that dress, or I love her fishnet stockings.. or I don't like that sweater.........I have to laugh because he is a 6'3" manly guy who never ever cared about that kind of thing. Thanks to all again! God bless!!
Welcome Fergie....I have found at this site that there hasn't been a topic that hasn't been touch on in some way. Also I think you get way better info from the people that are living with it than professionals that are just telling you the stuff they have read from a book.
My husband started out aMCI, went to a different neuro and he changed it to EOAD. I honestly think many times they say MCI to make it easier to accept then AD right away.
It should not be surprising but it is inappropriate for a doctor the prescribe a medication (Aricept and Namenda) and NOT give a diagnosis!
If they are too frightened to face you and say the words (Alzheimers, Dementia, FTD, Lewey body, etc,) they should not be handing you a prescription. I cant imagine his oncologist removing 'half his colon' and never openly saying that he had cancer. . . .
At one time people (doctors included) found it too scary to say 'cancer' or 'AIDS' but now that there are treatments the words (and support) come easier. Someday this will happen in the dementia world also.
After being fired from 6 jobs in a year and a half (for 'incompetence') my wife received a Mild Cognitive Impairment (MCI) diagnosis at age 57 (at a dementia specialty center) and they would NOT use the word "Alzheimer's" ("That can not be diagnosed until an autopsy") but told us to continue all the Alzheimers medications(!)
So we left their office confused and baffled. "If my wife doesnt have Alzheimers why is she acting this way?" It was wrong on their part and I wish it would never happen to anybody else but your story show that it still does.
5 years down the road (a new health plan) and her diagnosis is now Alzheimer's Disease. (which seems correct for your husband also)
Survival for you? EVERYTHING that has been reccomended above!! You will quickly learn that us caregivers know more about dealing with this disease than the doctors. Your job is to read and study EVERYTHING you can about dementia and the behaviors that are associated with it.
Pretty much everything you have posted about your husband is "normal" dementia behavior and very familiar to all of us. Your job is to learn to accept it as a new normal and deal with it. (not easy)
Your husband cannot be changed, it will be you that needs to change to adapt to the new Alice in Wonderland world that he has brought you into. Again Not easy, but the only way to reduce the stress. Welcome to the club Jim
Thank you m-mman. I apologize for the cancer mis information. He did get a diagnosis of Stage II colon cancer. He did have chemotherapy which was not tolerated well. He was suppose to have 12 treatments but after 6, his doctor decided to stop. We went to his oncologist yesterday for his 6 mo followup. Good news....he has been cancer free for 3 years,his CT scan and labs were normal, so will now only require a once a year FU with his doctor. Tomorrow we have a follow up appt with his Neurologist.....we will see.........I will report back.
I'm new, and -- although I belong to other online support groups groups-- I'm not sure where to start. Should I just jump in and comment on Ferggie's post?
Welcome to my website. You must sign in to comment. Look to the top right of this page for the "sign in" . When list of topics come up, click the one you wish to comment on. At the bottom, there will be a box that says "enter comments". Put your comments in that box, and click "add your comments." In this manner, you will be adding comments to the subject of that particular discussion. (You've already done that)
If you wish to add comments about a different discussion, click that discussion, read the comments already there, and add yours at the bottom.
If you wish to start a different topic, look on the left side, and click "start a new discussion". There will be a section for you to name your discussion; a section for you to put your comments, then click "add your comments".
Anyone who wishes to answer or comment on what you have written will do so by clicking your discussion and adding their comments. In order to keep things orderly and easy to find, I ask that everyone stay on topic - For example, if the topic is about loneliness, make comments about loneliness and what others have said about loneliness, and try not to veer off onto another subject. For all topics, click "search" at the top of this page, and type in what you are looking for - example - driving, companionship, anger, etc. - those topics will come up, and you can click them, and comment on them.
For privacy purposes, I would not suggest putting your e-mail in your profile, but it is up to you. Many members have become friends and do e-mail each other, but I never give out e-mail addresses without permission.
You can go to the top of this page - click "welcome new members", and add your story. Others will come along and welcome you, including me.
Ferrgie, What I was trying to illustrate was that when the cancer was diagnosed the doctor described to you the problems and reviewed all the possible treatments and options and the risks and benefits of each. But it doesnt seem like the neurologist told you much of anything about the dementia problems and all available treatments and options.
They did a national study before Obama signed the National Alzheimers Project Act (NAPA) and the fact that Doctors dont discuss the dementia diagnosis and the implications of it is a national problem. This is something that NAPA is supposed to address.
Arianna, Feel free to jump in anytime. You might also consider posting a little introduction about yourself if you feel like you are ready to do so. FYI - If you come to us from and are used to the AFA message board, this software is much less sophiscated and does not send out emails. You wil need to check back regularly but it does add to the community atmosphere. ;-) Welcome. Jim
Ferrgie, my husband's cousin told me that God picks special people to take care of spouses like ours. Lloyd's first wife died when she was 30, his second wife and his own mother would have slam-dunked him in a NH at their earliest convenience. So here I am and I certainly hope God is watching me most of the time and lifting me up the rest of the time. It is not easy. I believe my husband (62) is nearing the end of the road. His doctor has said as much. He is unable to do anything for himself anymore. He still walks, but needs more help all the time. I must hold his hands to go up to bed every night and to come downstairs every morning. Then other times he will be up and down all day long. I have noticed he is curling up more and more in a fetal position at night when he sleeps and even at times sleeps upside down. He roams all day long leaving throw rugs in heaps, taking pictures off walls, and other odd things. Sorry you have to be here, and you too, Arianna, but it's a great place to come. These people understand what you are going through and someone will always have some words of wisdom that apply directly to your situation. Doctors seem to be little good for anything other than prescriptions. And seeing someone 2-4 times a year makes them an expert on nobody!