Hello all. My DH was dx'd in '10 and one of the struggles that I initially could not deal with was my shutting him out emotionally. I felt so awful, but one day I googled something of that sort and found this site. I've been 'lurking' ever since. I have learned so much about what this disease is and what's to come but more importantly i am confident that with the help, knowledge, wisdom and understanding that I've found here, I will survive this emotionally as well as physically. God bless you, Joan, for what you have given us and the rest of you for sharing your stories. Fiona68
Welcome to my website, Fiona. Since you have been lurking for awhile, I guess you know what we're all about. Please be sure to log onto the home page -www.alzheimerspouse.com on a regular basis for new blogs, breaking news, and new information.
Hello. I've been checking in to this website and the message boards for a couple of years, and have learned so much in terms of what to expect, how to prepare (if that's possible) for each phase of this journey. My DH was diagnosed with Early Onset early in 2008, but I guess really had been declining for 6 or so years before that. He is now 56 and I am 53 and still have a teenager at home. The message boards have been difficult to read at times, but so transparent and really helpful. And I do feel connected to all of you and have prayed too. Thanks to all (and Joan) who have shared their experiences so willingly. Well I guess that I've got the courage now to join in the discussion every once in awhile.
I am new as well and feel stupid because while I am a good 'tecy' I don't know how to post or answer anyone who has responded to my 'discussion! I can't even figure out where to go to get an answer to this question?
First, make sure you are signed in. You can read, but NOT post if you are not signed in.
To add a comment to a discussion: Click on the discussion. Read the comments. Scroll to the bottom where it says "enter your comments". Write your comment. Click "Add your comments" Your comment will show up immediately. Others will then add to that discussion, either answering a question you asked, or simply commenting on what you wrote. To answer them, or simply add more comments, repeat above directions.
To start a discussion: Click on "Start a new discussion" - it's in red on the top left side. Title your discussion. Write your comments. Click "Add your comments".
Thank you so much! I will give it a try, although the 'Where are younfrom' discussion has 800+ pages! I wil keep trying. Also how to post your profile ?
dancyn - at the bottom of a discussion if there is more than one page, you will see numbers - click on the last one to get to the end of the discussion. Here it is page 13.
To search click on search at the top. I find the best luck clicking on advanced search, then fill in what I am looking for in the middle search option.
I've only added a couple of comments to this wonderful neighborhood. I'm actually sort of intimidated, as you all seem to know each other, your situations, etc. I have read past posts and can't seem to keep you all straight, but really want you to know that your comments have been so comforting to me. Although you welcome all who email, I feel a little as though I'm barely a visitor or the new kid down the block interrupting the group on the porch drinking lemonade. Like so many, I just lurk, finding comfort in the fact that there are truly others out there that are experiencing the trials my guy and I are going through. Every time I think I have a new experience, well, I read it here. When I think it can't be any worse, one of you do have it worse, but seem to handle it so well. I can't help but sit and cry, not just out of despair, but knowing I am not alone in this awful experience. Wish you knew how much this site means to me, and I'm sure also many others. The thing is, I'm sure you all do. Thank you so much.
Janny, you are so welcome here! I lurked for over a year before I got up enough courage to post. Tell us something about you and your spouse - you'll see how we all pull together! Hugs to you.
A little about us: We have been married for 36 years. My guy is 73 and I am 60. He was diagnosed in 2006, but certainly struggled with it earlier, as everyone seems to. In addition to AD I'm told he has Parkinson's, which is why he is so physically limited. At this point, he can shuffle and go to the bathroom on his own, although it isn't pretty. His ability to speak has come to a whisper, and then, only when absolutely necessary to communicate, which of course is a challenge on it's own, but he can. He needs help to stand, has lost weight, and gets lost in our own home. I have all but given up taking him anywhere, other than to ride shotgun to the grocery, etc. I have arranged for 3 hours on Thursdays for a little “me” time. He still knows me most of the time, and recognizes our two children, now grown, but live nearby. Our son checks on us at least by phone daily, and comes by at least once a week, sometimes staying long enough for me to run errands. My daughter is loving, but very caught up in the drama and obligations of her own life. We have had a great life, one in which my guy has never raised his voice to me. He is such a sweetheart, even now, which makes me so grateful that I can still care for him in our home. I cared for my mother, who had a crippling stroke at 53 and lived to 72, and also her sister, who was deaf, and developed AD later. My guy was diagnosed a year before they both passed on. So, my life as a caregiver has been busy. When I read the stories on this site, I realize I am pretty blessed after all. Thanks for inviting me into this website. Like I mentioned, it has been a lifeline, and I am grateful.
Welcome janny! Many of us are here many times daily, but don't post very often, but when we do post people recognize us. If you post something, someone will usually come along & respond to what you have said. If no one does, don't take it personally. Sometimes we realize that all you want to do is vent, so we let you. There is a wealth of information here & as you have already noticed, you can read something & really relate to what the person is talking about. Come back often & vent when you need to.
I too am new to posting though I have been reading for six or eight months. I too still get people mixed up but am starting to get a feel for who's who.
My husband is 62 and I'm 53. He was diagnosed in 2008 with FTD. He gets around well but is like having a big toddler around the house. He attends adult day care 3 days a week to allow me some time.
Thanks so for the welcome! Hopefully more of us that just read and don't participate can put forth a little effort, and add to the comments. I just know how much they have helped me through the years. My best to all, and thanks for the lemonade. :)
WELCOME to janny.! almost everyone was a lurker before attempting to jump in an dpost. this is a great group who get to know each other from each post. but if you like to lurk its ok too. happy to see you took the plunge! divvi
Please do not be intimidated - we are not mean. As for getting to know everyone, it took me well over a year to get some people straight. I still, after 4 years, get people with the same or similar names confused.
Even got more confusing when we started the Facebook group because we use our real names that.Our Facebook page (azspouse) is for those that want to chat, share religious thoughts and feelings, just to keep in touch. This is the place to get the help and info - that is to socialize.
To Lakegirl, janny, katherinecs, and all new members,
Welcome to my website. I have been a little under the weather, so have not kept up with my welcomes. My apologies. As you are probably aware, 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 appplies 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. 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 may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
joang, my az husband had shingles starting June 8. After oozing rash was over i found a spray with lidocaine in it that helped ease the itching and pain. It is called COOL BLUE ALOE MIST. Before that when it was still oozing BAND-AID CALAMINE SPRAY which had a pain reliever in it worked good too and didn't have to be rubbed on like the calamine lotion which aggravated the oozing. I also put white cotton t-shirts on him which acted like a bandage. I have been reading this site for several months and finally have a few days to get started responding to it. My azh is at VA Hosp in Saginaw, MI for respite care. I needed time to go to dentist, doctors appts. and time off. They are doing a great job with him, he fell first day so they now have someone sitting with him in the room to keep him safe. The give you 30 days respite per calendar year and this is first I've used it. First 21 days are free and the 9 days of very low co-pay. Also to others, they have provided lots of things we needed and told me before I buy anything to ask them if they will provide it.
Husband is 80 and maybe stage 6???, diabetic and can't do much for himself but still can feed himself and go to bathroom alone most of the time. It varies from day to day but you all know that is the way it is. I am 76, in good health, and still can do most everything I want to but have to do everything now. 57 years of marriage, not real great but hung in there. Have read that there are some of you like that too so helps me to cope.
Welcome dorielMI, Sorry you have to be here, but glad you found us. If you have been reading here for a few months you know there is a lot of information here & people who understand what you are going through. Where did you get the Cool Blue Aloe Mist? I have a rash that is itchy & I've tried everything.
ElaineH I got th Cool Blue Aloe Mist at Meijers here in Mich. It is from Fruit of the Earth,Inc. Fort Worth, TX 76155 web site www.fote.com. Thank you for the welcome. Hope you con find this, it is a bit oily with the aloe but does the trick, has 1.0% Lidocaine which is a good amount of it.
Welcome dorie, and thank you for the tip. The rash is all dried up now, but I keep putting on the cream that dried it up in the first place. Doesn't really hurt anymore, but I think that's because I keep it covered with soft gauze pad and stretchy sleeve to keep it in place.
Been reading the comments for awhile. I meant to be john66 but taped the 6 key one extra time. I am 24/7 for DW and very familiar with issues in the various threads. Found this site through someone in my support group.
Hi Joan and everybody My name is honey My husband and I live close to Chattanooga and we've been married 52 yrs I'm 74 and he is 78 We got the AZ diagnosis last month This diagnosis is almost a relief in that we have an explanation for what has been going on for maybe 15+ yrs but oh so subtle we have two grown daughters - we all just thought what seems to be happening was because our Dad/husband had retired and never was able to 'find his place' in his new world Much of the change has been emotional thus far- there is some confusion, but he seems to have most of his 'facts' still pretty well in tact. This website has already been so helpful-- really helps to know what others are experiencing and well as what perhaps lies ahead for us I'll sign off for now-- just wanted to say I'm glad I found 'you all' Honey
Welcome to my website. I guess most of you are familiar with the message boards, but they 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".
Do not miss the "previous blog" section. 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 may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
Hi, I'm new. New to this site, and new to the diagnosis. Actually, we don't have the Alzheimer's diagnosis, but the dementia is progressing very rapidly. We went through all kinds of testing in May, he's getting worse, and I'm looking into second opinions. He's only 63 so it's considered early-onset, although I realize now it's been coming on for much longer. He's ADD so it was easy to say "oh, it's just him being him...." Our finances are in a shambles, I'm teaching and hope to be able to keep that up because I can work from home a lot. He hasn't worked in several years, and bankruptcy is a real possibility. In the meantime, I'm dealing with all kinds of weird stuff and trying to keep things in order.
samjb welcome to our group. Sometimes getting a true diagnosis is very difficult. Many times it is the spouse who realizes something bad is going on. Our collective experience is all here for you-just ask.
I am new here too samjb...I wish you weren't and l feel the same about the money. DH always was so good and conservative with saving it Now he's spendng it at the bars for lap dances (he has admitted this) Thety ran test last week...don;t know where I am headed with him, but his father and brother both died of this disease so I am sure it's the deal. He's a recluse when home and even though he is hypersexual its not with me. He hates me! Me I hate this disease because I am now living with a stranger who yells and cusses at me and he could care less if the neighbors hear him. We are new to the neighborhood and it's very umcomfortable. Lonely is my middle name because I am new to this state and have no friends. Family doesn't want to hear me. I hate to go on and on but I need someone to share my thoughts with. A support group...ha....I have no time as I am running myself ragged doing EVERYTHING. Sorry to complain
lonely - you have us here. I know it is not as great as in person but for many of us this is the only place we have. We also have a site in Facebook where we do a lot of just chatting about dementia and other things -less intense than it can get here. Here you will find more and better info than most any other site.
Charlotte, Thanks you. Although I am new here I find the people in here so very kind and helpful. It's a wonderful avenue, but it's too bad we have it be using as our source. Have a nice evening!
Hi. I'm new here. I'm not really a techie and have never joined any kind of chat room so we'll see how it goes. First question: what's DH? My husband was diagnosed a year ago now - probable Alz., but that it would take a couple of years to watch the progression. He was acting strange for a year before that so he was 60 and I was 57 when this all started. Actually the last 4 years have been one challenge after another with no room to recuperate in between. How I'm coping changes hour by hour but overall good I think. Although other times I think "how will I be able to live with this degree of crazy and still stay sane myself?"
Welcome, ring. So sorry you have to be here - but this is the best place to be! On the home page, on the left side toward the bottom is a list of abbreviations (DW=dear wife; SIL= sister in law,), etc.
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 appplies 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. 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 may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
Hi DH diagnosed atypical AD a few months ago. He is 65 and I am 62. It feels like our lives are over to me. I guess because it is the beginning of the end of our dreams and plans for the future we no longer have. How do I stay in the present and make the most of this time??
welcome Lorrie! so sorry its been a bit of lapsed time to welcome you here. we try to stay focused on the day we are in and make the best of that, rather than look into the future. many of us are in final stages, w hile so many like you and DH are recent members. there are numerous posts if you do a search about recently diagnosed and how to cope. sorry for the delayed welcome! divvi
I am new here also....my husband was diagnosed 2 years ago with infectious dementia....his speech is at best horrible....I usually feel like an interpretor for him. I work 3 days a week but don't know how long even that will last. I am like a lot of people ... scared...very concerned about the future. He is currently on the Exelon patch and even though I don't know that it is working...he has had no side affects and I would be fearful to take him off in case that it is working. He can no longer drive - our doctor told him that 3 weeks ago...he doesn't understand WHY. I have seen some changes this year so I know that he is slipping. I am checking this site because I am thinking of getting another dog of some type to see if it will help him ... our dog of 16 years died last year and the dog was his buddy. He is pretty lost the 3 days that I work especially during the winter when he can't get out and piddle in the yard. Any suggestions?
Welcome to you, Lorrie nd hulamama51. With the holidays, I'm sure more will be along to welcome you to this wonderful life-saving forum. My DH was DX'd almost 10 year ago and keeps slipping from stage to stage.
Keep reading and posting here - it's the best place to be in our positions.
Lorrie and hulamama51, welcome to our site. I have learned so much since I found this site about 8 months ago. My DH has never been officially diagnosed but his nurologist assumes it is Alzheimers (AZ) since he has all the classic symptoms. He is 82 years old and he started showing symptoms at least 5 years ago and probably longer. I took his car keys about 18 months ago, though I didn't let him drive for a year before that. This is a great place to know you are not alone. Sometimes we don't even expect an answer to our problems, but just need a place to vent.