Welcome. I presume your husband has Alzheimer. You'll get all the information you want here. My husband has passed away but I have made so many wonderful friends here.
Welcome, Debm. Just jump right in. Tell us something about you and your husband (DH). You can add your comments to threads already started, or you can start a new discussion. This is a wonderful place for support and to find answers to your questions. So sorry you need to be here, on this rocky road we are all on, but you will find it a great place to be!
You took the first step now tell us something so we can help you. You might begin by reading some information In the blogs. You will find this site easy to use and the people here very caring and helpful.
Welcome to my website. 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.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience".
If it applies to you and your spouse, there are 4 sections for EOAD (early onset AD- now called YOUNG onset)members - two of which focus on the young teens whose parents have EOAD There is a great section on informative videos, and another excellent resource - Early Onset Dementia - A Practical Guide. You can go to the top of this page, click on "search", and type in EOAD, making sure the "topic" circle is filled in. All of the EOAD discussions will come up - there are about a dozen of them.
Do not miss the "previous blog" section on the left side of the home page (www.thealzheimerspouse.com). It is there you will find a huge array of topics with which you can relate. There is a "search" feature on the home page that allows you to look up different topics that I may have written about in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
Please tell us a little about yourself and your husband.
thank you all soooo much for replying so quickly!! xo
Joan, looks like so many are thankful and grateful for you starting this blog, so thank you so much.
I have been told my husband has Alzheimers, he is not fully aware of his condition yet. We have an appointment with doctors for a PET scan in a couple of months, I am trying to move the appointment up. I have been struggling in my marriage for a few years, my husband just turned 65........... I am a bit younger. He was complaining about remember names, etc. but I had notice a lot of behavior changes. He was rather mean last year and I pretty much demanded counseling, which led us to testing. He did a 4 hour test with neurology clinic as well as an MRI............ our family physician told me he has Alzheimers, but the next 6 months would for sure detect it. That was in January..... His behavior is very weird............... and he acts very adolescent often. He has a habit now of talking like Donald Duck.....Whistling loudly, sometimes like a bird, sometimes just super loud. He has cursed at me, called me same inappropriate names, etc. there is no intimacy, social is limited, he has been being really mean to one of his best friends, etc..... feeling a bit lost and not even sure what stage we are at with all of this. I am not very familiar with this disease and have been trying to read and learn more, finally found a support group and they told me about this site. I have been there 1 time .....
Tomorrow I will search through the archives and give you links to some of my blogs that relate to some of the behaviors you are describing. It always helps to know that you are not the only one experiencing something. For tonight, I am suggesting that you read the very first blog I wrote. Go to www.thealzheimerspouse.com. Look on the left side and click "previous blogs". Then click 2007. Then click "July". Read the first blog on the list.
My husband was 65 also when he was dx last summer. He too , had memory problems and social behavior issues. For a few years before, I had noticed he lost his enthusiasm for things we used to enjoy together. His temper and agitation had been difficult to live with. We went for extensive testing including a PET scan and his diagnosis was Alzheimer's. I know what a heart wrenching experience it was for me to hear this diagnosis. Shock, fear, anxiety, hopelessness ,sadness and more were my Companions. It is good hat you found a support group to attend. and this website to share your feelings and gather support and understanding.
Debm, Welcome to the message board where no one really wants to be a member, but that has been such a Godsend to so many. We are all on the same journey, and it can get really bumpy along the way, but you will find the love, support and guidance here that will help to make the journey a little easier to bear. When my dH was dx'd in September of last year, I spent most of the winter researching AD and learning as much about the disease as I could. Dry, clinical, objective textbook reading. But it is sites like this, which I discovered in April of this year, that really gives you the nitty gritty of what is going on as you and your LO travel down this path, and provides some good ideas on how to deal with issues as they arise, from people who have been there and CARE. I followed Joan's advice and started reading the blogs, beginning in 2007. We are very fortunate that Joan started this site and has shared so much of her journey with Sid. {{{{{Hugs}}}}} to you
This is a terrific sight! Each member here is or has gone though this journey with a spouse (the star after their name means they have lost their LO (loved one) It's a safe haven where we can share out thoughts (without judgment) openly and honestly, where we vent, and where we share encouraging words to one another.
Yes, your marriage sounds very similar to mine (and many others here). The behavioral problems are common with this disease. It literally ruined our relationship, but I am trying to hang in there because I realize that my husband is no longer the person I fell in love (slow changes over many years, but very dramatic changes). The thief and destroyer moved in and the monster took over. The pain he has caused me still cuts deeply, but I am slowly realizing that it's not him, but the disease. None the less, it hurts.
Visit often....read the sidebar which are very educational also!
Lorrie, Thank you so much for your words. Really a hard, sad, tough disease for all of us... so sad for everyone involved. looking forward to this website and blog...... deb
Lullie, I am looking forward to this site! I know everyone has their own journey, but I am hoping to find similar information situations, etc. and I really want a safe haven to go to. that makes me feel a bit more comfortable............
my husbands behavior is really challenging... and monster is what this is................ so sad for our relationships!!! looking forward to being on this blog!
Yes, you will find similar situations as yours husband's behavior. The marital relationships and behavioral problems are common here. My husband has gone though the adolescent stage as well. I won't go into the nitty gritty details, (as it has been posted here numerous times), but very promiscuous. Also, watch you're savings, checking, and credit accounts closely, along with history of the internet and phone logs. Don't put ANYTHING pass him! Be watchful and remember you will NEVER win an argument!
The left sidebar is on the main page (not on the message board) located under the red star. You will see articles regarding:
1. Alzheimer's articles of interest 2. Newly diagnosed 3. Understanding the dementia experience 4. Driving and dementia
You will learn more on this website than reading many dementia books as the people are a real. Don't get me wrong, there are lots of good books out there, but it's always nice to know that when you have a question or a problem someone here will always come along to hold your hand and share.
Hi all, thank you again for your responses, help, support, etc. I have started reading blogs and so many familiar stories, feelings, etc. Feel very blessed that I was told about this blog and thank you again Joan!!
DebM , Aloha from the Hawaiian islands and though I am sorry you are here, I welcome you and hope for this site to be your companion and help in hard times, and a smile is to be had many times here too!
thanks so much for the welcoming. I am grateful for this site... have not had a lot of time to read much yet, but am thankful for something so amazing. I feel this site will be a HUGE help!
Welcome Debm. the bizarre behaviors you are relating are surely common to many of our spouses. they can be intolerant, childish, demanding and embarrass us in public in those beginning stages. its a very hard time to get them diagnosed and onto meds to help control some of these behaviors. looking forward to you chiming in on other posts! divvi
Welcome Debm..we are sorry you have to join our ranks but this site will be of immeasurable value to you as you fight through this journey...We all came here with our questions and uncertainties and the veterans here will be able to help guide you through some of the iffy times...and for veterans like me, the ones who have the *s will be able to help those of us who are new *s get our footing..so come and cry, vent, ask questions and join in.
My DH "Dementia Husband" is nasty, nasty. For the last few weeks I had the loving old boy back but this morning the old nasty guy showed up again. When this happens , I can't do anything right , I am really stupid and I don't know how to drive or park or clean or cook!! Well I could go on for ever but he seems to go in and out of this nasty stage but I never know how long it will last or if it will become the norm. I have, like so many others learned so much from this site and I would be lost without it. I have been surprised when I ask our Dr. What to do or what is happening and she really doesn't have a productive answer for me, so I come home and ask here and I always get the help I need and the support. I wish we didn't have to be going through this ever but this site helps.
so now I am second guessing if this is alz............ I had someone tell me to look up frontotemporal dementia. she said this is a similar behavior pattern, but not alz. my husband is scheduled to have a PET scan early November.... will this clarify his disease??
thanks for the help everyone.......... feeling lost :(
The PET scan should help clarify if it's AD or FTD...but be aware that there's the possibility that it could be a mixed dementia. It could be both AD and FTD. Make sure you ask the doctor if (s)he thinks there's a possibility of FTD, AD or mixed dementia.
Many of us have spouses with FTD and yes, their behavior can be very difficult and trying at times. My husband was just plain mean spirited...he was insulting, called me terrible names and ultimately became physically aggressive and violent. FTD frequently affects younger people, in their 40's and 50's but of course that's not a hard and fast rule.
We're all here to support you whatever the diagnosis. Keep us posted on how you're doing and what the PET scan says.
My husband has a mixer of both frontal temporal dementia (FTD) along with alzheimers. There are several of us here whose spouses have both types and as LFL said it really doesn't matter because we are here to support you regardless of the dementia dx.
My DH has vascular, ad, and bv fronto. What a mixture. I get so many answers here. Debm, keep reading here. It is strange talk at first but soon you see you DH in there somewhere.
Keep in mind that the PET scan may not show anything unusual. If someone has suggested FTD then you should have the scan viewed by an expert in FTD. A radiologist is unlikely to note anything related to dementia. My wife's PET scan 4 years ago didn't show anything, to the surprise of the neurologist/psychiatrist who is a dementia expert. Unfortunately it takes an autopsy to get a definitive dx.
Welcome, Debm, to the best site on the internet for people in our situations. My wife was diagnosed a month after turning 63; she is now 67. Just digest the comments and suggestions already made to you about becoming familiar with the wealth of information available to you on Joan's amazing site. For sure you will learn two things very quickly ... 1. With just about any situation you may find yourself dealing with, others who post on this site will usually be able to offer some help or guidance based on similar experiences. 2. You will probably learn more from people on this site than you will learn from most doctors. Sadly, most caregivers know more than most doctors when it comes to diagnosing and treating people with Alzheimer's or any other form of dementia. Just hang in there, Debm.
My DIL likes to tell people I am the expert on Alzheimer's disease. Of course I am not, but she is impressed by my knowledge I do have - knowledge that 99% came from people here. And when people try to say it is just memory problems I think they end up wishing they had not!
Next trip to the memory clinic, I'm going to ask if my dh could have FTD. He was told several years ago that he has an artery blocked in the front of his brain and nothing could be done about. Nothing else has ever been mentioned. He was dx with vascular d. 2 years ago. Only an MRI was done, now this past June his cardiologist made.an appointment for him at memory clinic, they said he also had az. He is going on 83, so he isn't in the age range for FTD, but I wonder how long he could have had this blockage??? Bonnie
My sister has VaD following numerous TIAs and a stroke. She has the personality change, anger - can be sweet one minute, raging the next. So it could be VaD with AD. Doesn't really matter - it all ends the same way. You treat symptoms as they come up and go on.
thank you everyone for your amazing support, kind words, and information that you have given me. I am very grateful to have been told about this site. many of you say keep reading and you will find answers........... this is such a huge site. Where is the best place to read? i have read some of the blogs, and these message blogs seem amazing...there are just so many and I don't even know where to start. I am not very familiar with these blogs. any suggestions would be most helpful.
I find this disease to be very strange. I sometimes feel like I don't see what others do, maybe because I live with it everyday?! I had one friend tell me the other day that when we saw her for a very short time a couple of weeks ago that my husband seemed like a special needs child........... does this sound familiar to anyone?
I've never been told that but think about it...their behavior is not usually the norm for adults or children past the age of 10. If I think about my husband's behaviors and responses and I am being truthfully honest with myself, yes he can appear to be like a special needs child, particularly since he's solidly in stage 6 moving to stage 7
The best way to find things on this site is to search by topic, i.e., incontinence, aggression, etc.
Good luck with your search and feel free to ask any questions. If they've been answered before one of the veterans will bring the discussion "to the top..ttt" for you.
LFL, thanks for your response. I was surprised she said special needs, and I realize he acts childlike at times.
How does one know what stage their loved one is at? Will a PET Scan tell that? This week has been a bit confusing to me..... I just feel confused, unsure, etc.
"I have been struggling in my marriage for a few years, my husband just turned 65........... I am a bit younger. He was complaining about remember names, etc. but I had notice a lot of behavior changes. He was rather mean last year and I pretty much demanded counseling, which led us to testing. He did a 4 hour test with neurology clinic as well as an MRI............ He has cursed at me, called me same inappropriate names, etc. there is no intimacy, social is limited, he has been being really mean to one of his best friends"
Substitute 65 with 45 and "a bit younger" with "a bit older" and I could have written this.
I read your post and thought FTD. My husband went through a variety of dx. Only the MRI's since about 2010 really showed the FTD. It was not the usual MRI that definitively showed it and I will see if I can find anything with the name of that type of MRI. I have boxed up medical records- and have kept them (for what reason I don't know), but I will try.
As others have said, what this means is that it was certain he had FTD but not certain that he didn't have other forms of dementia as well.
Debm, on the message board, at the top, you might want to go to search and then search by topic. Or, you can search by comment and then see results that will list to what topic the comments were made.
Deb, with dementia, they "go in reverse" meaning as the disease progresses, they regress. Google "Clinical Stages of Dementia Fisher Scale and it will give you the different stages and behaviors associated with each stage. Be advised that most people with dementia have behaviors from more than one stage. For example, my husband is still ambulatory and can speak and is not yet incontinent but he has the other symptoms of mid to late stage 6. But it will give you a general idea as to where he is in the progression of his disease.
The Bigtreemurphy website is also very good about the various stages but recently many new members on this site have viewed that site and have been very disturbed by the photos. My advice is there is great info on the site, just read it do not view the photos.
thanks Abby & LFL for the responses. all of this is very helpful as i want to learn more about all of this. I am going to continue to read, research and learn....I appreciate that this site is available for all of us for support, information, help, etc.....
I know that none of us are enjoying being members, but am grateful that we have each other as we face our journeys.
Debm, When I first found this site, in addition to the blogs, I went to the Message Boards and attempted to read all of the discussion threads. There are over 7,000 now and I don't think I've read all but I've made a pretty big dent! Although the blogs are very interesting, I learned so much detail from the discussion threads.
Hi Debm When I joined this site, I had already done a fair amount of research on AD. But what I found useful was to start reading Joan's Blogs from the beginning, and the associated message board thread. It was one way to start and it helped me a lot just to realize that others were going through the same feelings I was. It also gave me a glimpse into some of the history of the members - knowing their stories makes my bond to the site even stronger that just being an AS. I branched out from there. As LFL says, the Fisher Scale will give you the different stages and associated behaviors, but few people with AD fall into a stage perfectly. For instance, my dH is pro is incontinent (stage 6) is ambulatory with assistance, and can still speak so I put him late stage 5. But does it really matter what stage he is in? Keep asking questions - that's how you will learn from all the wonderful and experienced people on this message board.
Debm - when I use the search, I click on 'advanced' over to the right (after clicking on search). I find I have better luck that way.
There are many threads as others have said. Even since joining a few years ago, I did not read every thread - some I did not relate to, and just not the time to read all and it can be overwhelming.
Stages: as said, do not get hung up in them. My hb's neuro never has used stages. I like 'mild, moderate, severe'. My hb's also has some of different stages, just depends on what part of the brain is being affected.
My dh is in stages part 4, 5, and start of incontinent he wears his pull ups all the time, which is start of stage 6. My dh ordered Mayo's book on Alz. In it he is full moderate. Today he wa closer to being the independent 2 year old. Results, spilled soda in front seat of my car. Last 2 days lots of anger, tonight Happy Camper. We never know what's next do we?. Bonnie
debm, I want to welcome you also! Like was already said...just jump in! My H has been diagnosed for 5 years now and I am so glad that I found this site. I would never have made it this far on my own without all the help and friendship I have gotten here. I am sure you have already seen that others don't understand what you are going through and are very little help. All the friends that I use to have slowly quit talking to me. I don't blame them but I understand them, I wouldn't want to deal with what I am dealing with either but I am. People here know exactly what you are going through and no matter what you say they will understand. It feels so good to have that support!!!!!
Hi Debm My DH has mixed dementia. He has vascular dementia, AZ and he had bv Frontotemporal. It is behavioural variant fronto temporal. He is not spending or sexual behaviour but just the opposite. I have to account for even .10c of our money. He controls everything and refuses to allow me to be his caregiver or to have caregivers in our home. He needs lots of activities and social ones. He has been attending the Day care here with monthly trips to respite in a LTC near us and has decided to go and live there permanently. He is number 1 on the list. He can be very abusive and controlling and has a nasty temper. I carry my care keys that have a control in them that will make the car horn go off, an alarm, I also carry, in my pocket a little case, my I'd and debit card and credit card, and my cell phone is always in my pocket. It was a very knowledgeable lady early in our journey that told me to do these things so if I have to get out if the house in a hurry I have them. It is breaking my heart that he is so cruel one minute and then sweet the next but his concern for me is long gone. His filters in his brain are not there anymore so he has no regard for me only himself and no initiative. In away I am happy that he has chosen to place himself as it was not something I was looking forward to doing. I live in Canada so we have quite a good system to help us care for them but they also have more rights them we do and can refuse care unless they are declared incompetent by a Dr.. As one of the on line folks described it it is a prison for both of us and very hard to live with. This site has been great as I find it is not the thing my family wants to hear when I get to overloaded and need to vent. Their Dad can still do no wrong. I read in an early thread that men caregivers tend to get more supoort but Mom can do it all alone and that is not true. Mom's need all the help and comfort they can get. This disease takes it all out of us and leaves a big empty hole in it's wake. Try to read as much as you can, they are all so knowledgeable and caring.
Welcome, sorry it took me awhile to day that. Sorry you have to be here. My DH also has child like behavior, sometimes worse than a special needs child! And I know firsthand. I have a 14 yr old grandson with Down syndrome . Adam is with us at least one night a week and is a joy to be around I really can't say that for my DH. Although he is much better with medication. I have found lately my DH is a little jealous od Adam.and they have always been each others favorites. So heartbreaking for little Adam he just idealizes his papa.
thanks everyone for reaching out.......... you are all amazing! it's really a lonely journey isn't it?! it's sad.......... and i know i have a big road ahead of me.
thanks for the support! i am here for all of you as well.