I have been to so many support/caregiver sites, but couldn't find anything that felt right for my situation. Today I somehow came across this one and started crying. I couldn't believe that I finally found a group that understood what I am feeling and going through. I have just spent the past four hours reading here and plan to read every topic over the next few days.
My husband was diagnosed in March of this year with Alzheimer's. But I have known for a good 3 years that something was wrong. We went to many doctors. Most of them told me there was nothing wrong with him. You have no idea how much I need the companionship of people like what I have been reading here. Hopefully, I will be able to contribute to some of the conversations going on. There are also questions that I would like to ask. I barely know where to begin.
I just can't thank you enough for starting this site and allowing us to come together !
Gretchen, That's exactly how I felt when I found this site. I received unbelievable information in just several weeks. I compare it to going to an Alzheimer's support group for about 3 years, & even then, doubtful I would have received all the information I have from this site. I am still amazed at what people will do for you & the research they will perform to answer your questions. It was a relief for me to know what was going on.
Welcome Gretchen, I am also sort of a new member. I think God directed me to this forum, these ladies are angels. There is a wealth of information & support. I may not walk in your shoes, however, I do know what it is like to need the companionship that has been shown to me. My husband is 57 years old with dementia. Some days I think I live with Dr. Jekyl & Mr Hyde, on those days I come here for pep talks. Hugs, Kadee
Welcome to my website. I started this site a year ago precisely because of what you said - I couldn't find anything that was right for the spousal situation. As my webiste's motto says, "Our issues are unique". No one can understand our heartache like another spouse.
I don't know if you came to the Message Boards first, or logged onto the main home page - www.thealzheimerspouse.com. If you have not already done so, please log onto that address. There is so much information there. On the left side of the website, there are lot of informative topics. I would encourage you to scroll through the "previous blog" section, and pick out the titles that interest you - I am sure there will be many to which you can relate.
Almost every day, I write a Blog, which can be found by scrolling down the home page, about issues and struggles I am having on this miserable AD journey with my husband. Most spouses who come here say that many of the Blogs say what they are thinking and feeling.
Also, every day, you can check the "Daily News Updates" by scrolling down the home page - that's where I put the latest news about Alzheimer's Disease, treatments, trials, and whatever news I feel is important.
There is always something new to read on the home page, and there is always support and understanding here on the message boards.
Based on your screen name, I am guessing you are from Florida. I live in Port St. Lucie, FL. We have many members from Florida. There is a discussion topic here on the boards titled, "Where are you from", and it is on page 3 of this board.
I am very protective of everyone's privacy, so you certainly don't have to tell if you don't want to - it was just a fun thing we started to see how far and wide we come from.
Welcome Gretchen, i find it very comforting to connect with other AD spouses who actually can relate to what our specific issues are. all subjects are discussed here relative of their 'taboo' in other websites. there is always someone who is in your exact situation or further along or behind in this dreadful journey. glad you find comfort as well. divvi
I have spent most of the afternoon reading and crying. My husband is 63 and I'm 56. We just had our fifth anniversary last week. It hurts so much to see him slipping away each and every day. I know I should be thankful that he doesn't have the temper tantrums and problems that a lot of you are experiencing. Apparently we all have our own situations to deal with. He does have other health issues. It all started with atrial fibrillation, congestive heart disease and severe sleep apnea. He is already wandering. That is a major problem for where we live. We are out in the country and he wanders off into a field and just lays down on the ground and goes to sleep. We are near Tampa, FL and the heat, insects, and snakes make this far too dangerous. After just a couple of those scares, I put a deadbolt on the door to keep him in. He isn't too happy about that, but this seemed to be the only thing to do at this point.
How have others dealt with this problem? Should I ask it as a new discussion?
deadbolts on many doors in our home have allowed me peace of mind for a couple of yrs now. its not ideal but at least i dont have to walk into room and find dear husband (DH) halfway up the road in less than a minute now as i have labeled him 'houdini'..he is a superb escape artist-divvi
There are "chaperone" phones, if your husband will carry one ... they have GPS capability, and you can log onto your computer and find where he is if he wanders. I think some can be programmed to let you know if the person goes outside a specified area.
Use the "search" button at the top of the page, enter "chaperone phone" and hit the "comments" button. That should pull up several posts on this subject.
There are also GPS watches ... I haven't looked into things like this yet (my husband isn't wandering yet, thank heaven) but did a quick google and found quite a few. See, for example:
I am also a newbie here, but it has been a true godsend for me. It is wonderful to know you aren't alone when times get rough. I only have a couple of friends I can talk with, and hate to be a burden to them...my children have enough "on their plates" right now, so just reading or adding comments here fills a vacuum that wasn't available before. Momentary relief and incredible advice are always here,
Gretchen, I just joined this site recently, everyone here understands what you are going through and as you read the posts you will find the information you need to keep on going. It just helps so much to know that you have finally found a group of people who are going through the same agony. Keep coming back here, it will really help.
I can see where those would be rather useful in a city situation. However we have a 2,000 acre cow pasture behind us. I don't think it would help too much. It would take a helicopter to find him out there. I have caught him several times as he was on his way out there. I think we will have to stick with the deadbolts.
I, too, live in Florida..in The Villages about 1 1/2 hrs north of you. We are similar ages...I am 55 and my husband just turned 64. He is going downhill very fast, but does not wander, is not combative, and sleeps at night. So, I guess I'm lucky in a lot of ways.
Thank you to everyone for such quick responses to my post. This is such wonderful news to know that so many are on this site all the time. I feel like I have finally connected to a group in REAL time.
A special thank you to Joan for filling such a need. Actually, I did start with the blog and am working my way through each and everyone of the entries. I have found more understanding and reassurances there than any other web site that I have gone to. You are absolutely right, only spouses could ever understand how we feel.
It means a lot to me to have some many replies and on a weekend to boot. I expect I will have this site set to be open basically all the time so I can stay in touch everyday ! I am just amazed ! This is so much better than trying to talk to family and friends that just don't get it !
Gretchen, I'm new too. Before I found this site, I was totally panicked, I couldn't find any information -just general stuff that seemed to pertain to really older folks but no information about how to handle the situations that are discussed here. For the first few days I couldn't stop reading (I guess I was coming to grips with the reality of the disease) then I started making lists so I could get all the stuff done (financial=bank accounts, attorney, making appointments with research center etc.). In the beginning, I kept thinking this was a nightmare and I would wake up and discover my DH is just fine but by reading all these discussions it has helped me to finally begin to accept the inevitable. I still can't think about the future and through this site I'm learning to take one day at a time. I am so grateful that I'm not alone any more and I can identify with what others are sharing.
You are feeling just what we have all felt..no..it's not real..life will return to normal. To find that others have the EXACT same experiences was so amazing to me. I had a couple of good days with mellow feelings, then tonight the shit hit the fan again. Enjoy the small things, I guess.
Welcome to the website. Sorry we have to meet under these circumstances, but I am glad you found this site. I have an hour's train ride to and from work 4 days a week. I spend my time on my blackberry reading posts on this site and it really helps me to not feel so alone in this journey.
Gretchen - Welcome! I too am pretty "new" and also found so much help & comfort from things I have read. I live in Arlington, TX & I am 48 and my DH is 62. We've been married 20 years but together 25...I find from reading the entries on this website that I am not alone in "missing" my DH...nearly everyone seems to have had a really loving and wonderful marriage & the constant "slipping away" of our spouses is really really hard. Altho not everyone deals with "tantrums" or "wandering" or "incontinence", enough of us are dealing with "one or more" of these things & so the helpfulness and "heartfeltness" of the comments are such a blessing! I am thankful to have found this site & like you, plan to keep on reading daily! I hope you will be encouraged & feel loved here...I know I have been!
Gretchen; Let me add my welcome. I think that one of the major reasons that this community is so valuable is that in a way it levels the playing field. What I mean is that when I try to talk to others in the "normal" world , they often have no frame of reference. Even when they have had an older relative or friend with AD, its not the same.Often, it takes too much energy and emotional stress to try to explain where I am coming from. Here, you can just let down your guard and talk from your heart. Whether you want to rant, cry or ask for help. some one is here. Just last week I told a little story about life with my husband. Almost immediately someone posted with information that let me see that what I was describing was in fact another symptom of AD. I simply hadn't realized it at the time. Since then I have had a chance to read up on it more and as a result I am less stressed out when it occurs. This group has become as real to me as the people I spend my days with. We are on this journey together and while we may not be able to alter the journey , we can help each other along the way...
I would have been over-the-edge by now if I hadn't found the site. I check here the first thing every morning and it makes my day so much easier. Thanks to all contributor and especially to Admin.
Welcome Gretchen. I'm fairly new here also. I live in Bradenton, FL We can never thank Joan enough for this site. It has helped me more than anything I've heard or read.
It is truly amazing to me to also read posts by the rest of you and it is almost like I could have written the same things myself. This is the first time that I have felt any connection to others regarding the AD. The other sites that I had visited, were of different circumstances or totally different age groups. I'm sure we have some various ages here, but we do seem to be at least at about the same place in our lives and marriages. At least that is what I'm feeling here. Even though we can't change anything, it just feels good to compare notes with others in the exact same place in life. For instance on another post there was an overwhelming agreement on a connection between sleep apnea and AD. In the past, when I mentioned that to anyone else, they told me there was no such parallel.
As I have said before...I feel like a fake being here. So far I haven't near the problems most if not all of you have had. I think the main problem right now is the short term memory which can get really irritating. My DH can still eat well, although he has lost some weight, which I guess could be the Aricept. He has no other health problems to speak of, doesn't sundown, so far hasn't gotten lost when he goes for his walks, can take care of himself showering. The only time I help him with dressing is when he asks what tie he should wear to church. He does tell me the same thing quite often but not a few minutes after he's told me once. He was Dx'd when he was 79 and will be 80 in September so I don't think he will be ready for ALF or NH for some time. As I say....I feel like a fake, but please don't excommunicate me (VBG) because I know I will need all of you sooner or later. I feel like I can't offer advice because I haven't walked in anyones shoes yet. I do pray for all of us that each day will bring something to enjoy for caregivers and their loved ones. I think you are all wonderful people and hope I can be as good as each of you when I need to be. God Bless.
Jean in SC, not only aren't you a fake, you are probably in the hardest part of your caregiving journey. If we could locate the caregivers who's LOs are in stage 2 we would, each one of us, personally invite them to join us.
My husband is probably, physically at least, in much the same situation as yours. Because he has VD and not AD his condition is not even. He is loosing his verbal abilities. Just a little while ago he came in to ask a question and I don't have a clue as to what he wanted. We both just gave it up. Not only does he keep asking the same questions, he has decided to fixate on the drier this evening. I wanted to just leave the towels in there until tomorrow, but he couldn't deal with that. I had washed a pillow and it wasn't as dry as it felt when I took it out of the dryer earlier this eveining, so I put it back in the dryer again. He must have heard the noise. So when it stopped I pulled it out. It actually would have been a good idea to just let it stay their until the dryer got cold. Etc. Etc.
Can you offer advice? Well when the next newbie comes in here all upset, you can offer him/her comfort and tell them they are not alone anymore. When they ask about a symptom, if it is one your LO has, you can tell them that yes, your husband does that too. Some of the symptoms that drive us nuts are not on any list on any web page out there.
Believe it or not, your current experience is worth a lot more than you think it is to the next person who finds this forum.
Jean21 Don't leave, we all belong here. I am very much like you as my wife is not severely affected, ... yet! In fact I sometimes think maybe the diagnoses is incorrect (is this denial?) until something shocks me back into reality.
I do think there is a place here for the Stage 2 - 3 folks, as we do have a lot to learn. Many of the things I have learned here are what I attribute to keeping her in this relaxed state. Things like Don't keep asking when she can't answer, Don't ask her to do things that are too complicated, Don't let her get into stressful situations, etc
I just don't like reading about the problems many are writing about, because I am afraid we will be there all too soon. I keep telling myself You have to live one day at a time, and today is still a good one.
This is definitely a good web site for all of us. We just each find different things that are applicable to our situation. You never know what is going to be of help on any given day.
You have walked in your own shoes. That is enough.
You have experienced the fear that comes with noticing changes in your husband, and the devastation of being told those fears were well-founded. You have experienced the beginnings of the change in your relationship, you are trying to deal with decisions on how to handle the situation as your husband's illness progresses.
No two AD patients are alike. Many never develop some of the nastier symptoms other spouses are dealing with here. Hopefully, your husband never will.
And if he doesn't, you can offer hope to others who are just beginning this journey that they and their spouses may escape the worst AD can do.
Thanks Sunshyne, Every now and then I think of something that happened recently that I didn't give much thought to at the time. Last week we were waiting for a man to come to our house/condo. I was outside and didn't hear the phone ring and my DH came and told me this guy wanted directions. The man was at Walgreens which is a minute or to just down the road and I guess my DH couldn't tell him how to get here. I am going to have start writing these things down. We won't see the neuro until October but we go in August to the Neuropsychologist, Licensed Clinical Psychologist, Clinical Neuropsychologist, Forensic Psychologist. How's that for a doctor.LOL He is the one who had DH take the 3-3 hour tests last year. Maybe he will be able to tell me how my DH is doing.
Jean - You brought a "forgotten smile" to my face when I read about your husband needing help "picking out a tie to wear to church"...I DH used to dress in such nice shirts/ties...then he forgot how to tie his tie :( I tried learning on-line & that was "fun" practicing...seems like a long long time ago, altho it's prob only been 3 years. My DH was diagnosed in June of '04. BYW, if you ever get to a point where he cannot tie his own, believe it or not, they make "zip up" ties that are beautiful & just slip over their heads, under the shirt collar, and then "zip up" the back of the tie. The one my husb has for "special events" is beautiful! Got it @ JC Penney. Prior to that, we took one of his ties into a Tuxedo shop & asked one of the workers in there to tie it for him. :) I had forgotten those sweet times together with my DH...thank you for reminding me :)
natsmom, I am from England and the school I went to we wore a uniform so I know how to tie a tie if I still remember!! VBG. it probably wouldn't be the kind of knot my DH uses but by then he may not even be wearing a tie. I know this isn't really funny but I just thought about him trying to wear one over pajamas if he ever gets bad enough. I'm happy to have brought a smile to your face with a nice memory.
natsmom, I've been trying to find clip-on ties for my husband. He absolutely MUST wear a tie everywhere. I keep telling him this is San Diego, laid-back tourist town, and he's retired. No dice. Amazon.com has a whole bunch of clip-on and zip ties. (I'd never heard of a zip tie and wasn't sure what they were -- thanks! Sounds a lot better than clip-on.)
Welocme Gretchen We are glad you are here with us. I don't think at your stage in the game, I was willing to look for support. I was in denial for so long. It is hard to go and read all that people are going through when you aren't there and don't want to see that side of the journey from the beginning. However, I think it will be beneficial for you in the long run to have the support, and people who actually understand and care. You may find as we did that after people find out , many will kind of drop out of touch with you and you will begin friendships anew with people who will accept things as they are. Our thoughts and prayers are with you! decblu
Ijust found this website 2 days ago and am so relieved. I too cried when I started reading how everyone is alike and facing the same issues dealing with life as it is now and can talk about it to others.