Seems as if everyone whose spouses are in the earlier stages faces this problem, and it is ANNOYING, to say the least. My son - you all know him as the life-saving technical advisor for this site - thought I was the crazy one for the longest time. Since he lives in California, we only see him once a year, and all he focused on when we visited, was me giving instructions to Sid over and over again. Then repeating them again. Joel thought - "Oh, there goes Mom again - the perfectionist teacher". He knew his Dad had a memory problem, but he thought it was no big deal -just a memory problem.
Although the problem had been going on for 2 years, we didn't get the diagnosis until last October, but didn't tell Joel until after his wedding in January. (Didn't feel it was necessary to spoil the joy of their wedding planning and big day). As soon as I told him, he said - "Oh, NOW everything makes sense. Now I get it. I thought you were just being more, well, like you get." (Meaning I nag.)
Check out "previous blogs" and click on the topic "I Don't See Anything Wrong With Him/Her". It also deals with this subject.
Basically, because most family members are not with your spouse 24/7, they are not going to notice. One of our readers dropped her husband off at his parent's house for an overnight visit (I don't recall how many nights), and that was the end of them telling her she was exaggerating.
Interesting, and I definitely found it to be a little true in the beginning...but anyone who spent any time with Jeff at all begins to notice. In fact, twice within the past year or so, we've had dinner with friends who live far away and therefore see us rarely. In both cases, after 1/2 hour at dinner, as soon as Jeff went to the mens' room the friend asked me what was wrong with him. So friends who know him well can clearly pick up the differences quickly, but neighbors with a less familiar knowledge of him are more likely to think he's fine. His sister, who lives several states away, was sure it was just depression for a while, but the brother with whom he'd worked, as store co-owners, for years, was the person with whom I compared notes in the early days, and his notes were always exactly the same as mine, so we had that corroboration.
I was busy trying to hide Gord's condition from people. I felt it was betraying him to tell anyone other than family. I found out a few months ago that people have known for as long as two years.
In the early stages, people just can't see the problem. So many times people would say "he just looks fine". Oh but they didn't have to live 24/7 with him or their reaction would be different. All stages are stressful, but the early stages are difficult because they know what is happening to them. Ralph learned to put on a good front around people. Now it is quite evident that something is wrong. When my daughter came and stayed with him while I was away for a while noticed a big difference since Christmas. She did not realize what we were going through until she had to take care of him.
I think the first thing people noticed with Bill was that when Bill would sit down he would always save a place for me. If someone else started to sit there, he would tell them they couldn't because "Joyce is sitting here". When I would come close, He would pat the seat and tell me to sit here. He was also very jealous. He could be across the room and if I talked to another male, it could be a nephew or a SIL, when he saw us he would come right over. One time he informed a nephew that I was "His Wife". He doesn't know I'm his wife now but he is still more comfortable when I am sitting next to him.
I had a neighbor recently tell of the other neighbors statement that he thought Larry was "faking it" that he goes to his shop and works on stuff so he can't have the Alzheimers .......At first I was so angry...Why do people think because they have 5 minute conversations or because we are choosing to try and continue on as long as we can that we must be lying. For goodness sake why would we lie? ????? Then there is the helpful ones I call them they say" Oh he seems to be getting better". My niece who lost her husband to cancer 2 years ago and I talked about that, because I said I feel like everyone thinks I am a doom and gloom person if I tell the truth of what is going on here. And I don't tell the whole truth as to preserve is dignity...Thanks for letting me vent . Renee
Renee, I get exactly the same thing. People say "oh but we all forget as we get older and look at how well he is doing on the cabinet he is making." They don't know that it has taken him months, that I have to supervise every step of the way and the one time I did not, he ended up cutting the boards 12 inches too short.( He was a skilled craftsman before this ugly disease). Family is especially bad and they make me feel like you, a doom and gloom person. O's brother even said I'm trying to put him in an early grave! It is very frustrating but I am slowly learning to ignore such remarks.
Inge oh my you echo so much of what I have heard or felt. Especially the cabinet. Yes, yes , same thing took months and i had to go out and help with the simplest things so hard yes it is they that are putting "US " into an early grave ....Renee
Here is a old thread some of the newbies to this site might want to review. We were all here once and some of us just now in this phase and sometimes I think we make too light of the newbies early symptoms they are having to deal with.
I remember when we first went public, when DH was incontinent 3 times during the night after starting a new med, missing the toilet bowl because of mis-positioning, first started following us 15' behind, shadowing, don't want us out of their sight, etc. These first's are overwhelming.
Imohr, its true and the newer members here will need this info. just thinking of the shadowing and all the lurking( and my DH -yipes-the 'peeper''-the one eye around the corner)yipes gives me beejeebies remembering all that...and the following behind! so many will find that one fascinating that they ALL do it during early stage and most of us just took it for granted we are walking too fast:) boy are there some eyeopeners or what?? divvi
My DH has started doing that....walking way behind me. I, too, thought I was walking too fast but when I slow down, he slows down. I didn't know this was his AD.
Maybe they don't know where they are going, so it's easier to walk behind and just follow? I've never thought of this before--I thought DH was moving more slowly because his brain has to work harder.
Yes ...those with newly DX's spouses do need some of the old threads to read. Some newbies though have spouses in more advanced stages and have JUST found this website...like me. So many of the books are vauge as to what to expect. When they say looses concept of time...maybe I am dense ...but I did not catch on until my DH wanted me to wash clothes at 10 PM at night.
I really think that some of us do know more than the "experts". We have done the research and are living the hell. This is such a wonderful site to learn and get support from. One of the dirty dozen (the cracked egg one)
The walking behind the caregiver symptom has been attributed to problems with vision. Many AD patients develop "visual agnosia", in which the eyes function properly, but the brain doesn't process the signals correctly. There are many ways visual agnosia can manifest itself. (Use the "search" function to look for threads where we've discussed this in more detail, if you're interested.)
Patients may develop a type of "tunnel vision" that makes it difficult for them to see someone walking next to them, out of the corner of their eye. This makes them uncomfortable, so they prefer to walk behind the caregiver, where they can see the caregiver clearly.
I discovered this site several weeks ago but have quietly observed until now. This topic suits my current situation perfectly. My husband and I have been married for three years. A late in life marriage, I was 60, he was 64. We had dated for 4 years prior to taking the big step. We are both creative people, I am an artist and he is a furniture maker and sculptor. A perfect match. About six months after the wedding I began picking up on signs that his artistic eccentricities were much more than that. Long story short...after many tests and doctors he was diagnosed with early stage dementia. Since that diagnosis he has had 2 serious medical conditions and 4 major surgeries, all of which took a toll on the functioning of his brain. He is an amazing man in many respects. After long hospitalization and nursing home/rehab care he is home and back to functioning somewhere around stage 4. He lives in denial of his dementia as do most of his family and friends. There are days when I think if one more person tells me how well he is doing when they are only seeing him the way they remember him...I could just scream. I am totally responsible for his care and keeping our lives running as smoothly as possible. I end up feeling like I live in a different reality from the rest of my world.
Teri Welcome -glad you made the transition to join in person. you do need the opinions here like most of us. a spouse with dementia in denial is hard to witness and much worse to get coopertion from to plan for the future. your situation here is not uncommon. denial is frequent but an ongoing problem. hopefully you have in place all the necessary paperwork you will need down the road as DH progresses with our without his knowledge. many here are going thru this phase of denial with their spouses this week. join in any of the blogs and you will get answers and input you can get nowhere else. this is handson tried and true experience from those ahead of you in this awful journey. my best, Divvi
Teri, welcome! I'm so sorry you've been hit with this! And so soon after your marriage! A double whammy. He will probably never admit to the dementia, and will put on an act for others to appear normal, so that anything you say makes you out to be exaggerating (the topic here!). That is so VERY frustrating to all of us! WE have to deal with the dementia and no one else recognizing that it exists! There will come a time that he can no longer hide his symptoms from others, at which time you will feel exonerated, somewhat...while asking in your mind "what took you so long to see what I saw?"
one of the dirty dozen (since bluedaze is the cracked one, I would like to be the red one) <grin>
Teri, hi, and welcome to Spouse. Wow, you've been through the mill!
The family in denial have no good excuse ... your husband does. Many AD patients develop "anosognosia", which basically means that they genuinely have no idea the extent to which they have problems. There's a good description of this symptom at:
Somewhere I even found the speciic region of the brain that's been damaged, but I can't go searching for it right now ... I have a small black kitten firmly draped over one arm...
Teri, you ARE living in a different reality from the rest of the world. Except for us, of course. We are there in the same reality you are in. We are glad you found us, but so sorry you needed to come looking for us.
Welcome to my website. Please log onto the home page - www.thealzheimerspouse.com - and take advantage of all the resources there. On the left side of the page, there are a long list of sections that you will find extremely helpful. At 64, your husband fits in the EOAD (Early Onset) category - click on that section for lots of EOAD information. The "Understanding the Dementia Experience" is one of the best explanations I have ever read. "Newly Diagnosed and New to this Website" is another good resource.
The "Previous Blog" section has a list of the blogs I have written since I started this site in July 07. Scroll through, and you will find many topics with which you can relate. #29 is "I don't see anything wrong with him/her", and it relates to this discussion topic. The older blog pages take a long time to load, due to outdated ads. Please be patient, and they will load. I am slowly fixing those pages one at a time.
I encourage everyone to check into the home page every day - at least twice during the day for news updates, information, and of course, my daily blogs that chronicle my struggles as an AD spouse.
You will find that we all understand each other as no one else can. The emotional issues are completely different when dealing with a spouse with AD as opposed to dealing with a parent/grandparent, and only another spouse can understand.
Wow, thanks for responding so quickly. I feel an odd sense of relief knowing there are others out there living through similar circumstances. I maintain my sanity by doing my artwork in my studio which is my private piece of the world. I am taking DH to the dentist this afternoon so I going through the usual struggle to get him in the shower...familiar territory to many I am sure! So good to know you are all out there.
That seems to be a real similarity with lots of spouses....not wanting to take a shower. Some days my husband takes his shower with no problem, other days it is just a fight to get him to take off his jeans.
On the subject to "walking behind" - this was one of the first things I noticed about my DH before he was DX'd. Took him to get his eyes checked - they are perfect. He still does this, but I've found that if we hold hands, things are better and he will stay with me.
My husband also walked behind me...drove me nuts, until I asked the question on this wonderful board & others responded, that also happened with their spouses. Someone mentioned that perhaps, they do that because they don't know where you are going so they feel the need to follow...made sense to me. Since it is cold outside now and I want to get in the store as soon as possible, I stick my arm through my husband's & walk fast, which he can also then.
My wife also walked behind me until I started taking her by the hand. She is still about 1/2 step behind most of the time. Also, her walking has deteriorated to more of a shuffle. This presented a problem getting her into stores, etc. I got her doctor to fill out the form so we could get a handicapped plaque for her. This has been very helpful.
Hi Teri T, Wow, you have certainly had a tornado run through your life! Sorry for all you have to deal with but welcome to the site of warm hugs! As to the walking issue, my DH also walks much slower and behind, he used to walk way ahead of me and quickly. I too find that looping through his arm does the trick and we walk together. Talking to him about it does no good as he adamantly maintains that he is not walking slowly. Anyway, makes for warm and cozy walks in this cold weather. <grin>
Thanks, Sunshyne for the explanation of visual agnosia. My DH certainly does need to have an eye on me at all times! So if walking behind me will help, I'm sure he'll do it. I may have mentioned this on another thread, he has even taken to mimicking me (nicely) and has made me aware of how often I do things, like stand with my hand on my hip. It's like I'm a source of endless fascination--would be flattering if it wasn't so annoying! Oh well, it's nothing compared to the problem behaviors. I realize that it is just his way of depending on me for security and the help he needs.
Yikes, my husband always walks ahead of me ...and leaving me in the dust. I was silently complaining to myself how he's always done this and I have concerned it rude behavior. Now I realize that this is a blessing!