I've been checking this site out for several months but have hesitated to post as my husband has not been diagnosed. Our family doctor thinks there is something cognitve going on . . . perhaps the start of a dementia. I don't think it is AD but maybe FTD??? There are times when I think all is okay and I'm reading too much into his cognitive problems and then other moments when I'm sure something is definitely wrong. Reading through the various posts often makes me think all is not right because so often I can identify with things many of you describe.
Anyhow, one thing I've noticed with my hubby is that when talking (to me or other people) he often is not making eye contact. He may be trying to tell me something that isn't very important but he is looking away from me most of the time and only occasionally makes eye contact for a few seconds. For example, I may have been out grocery shopping, come home and ask him if anyone called. Well, yes, someone called and he launches into a long explanation of where he was when the phone started to ring and what he had to do to get to the phone and how he didn't get to the phone before the answering message started . . . and as he says all of this he is looking aside. If I interrupt to ask who called, then he backtracks and repeats most of what he's already told me (so I've figured out it's easier to just listen and not interrupt). I used to think he shared so much inconsequential detail because he was bored and not a lot was happening in his daily life (which is partially true). Recently I began to wonder if he is focusing so hard on telling me something that he has to look away to be able to concentrate better on what he is telling me. Just wondered if any of you have noticed that with your LO in early stages?
Hey, rachelle. First, let me say I think you've done a 'good' thing by posting your concerns and questions here about your husband's behavior. I only found Joan's site a short while back and I jumped at the opportunity to post. I don't post much but knowing that I can is quite a relief for me. I read A LOT here however and have learned a lot about this biz of dealing with a spouse who is, or seemingly is, presenting with AD/FTD/Dementia type problems. I say 'seemingly' because I'm in the same boat as you. My wife has been drifting off into what I call 'another world' for several years and will not go to a doctor, period. So there is no DX of anything, let alone some form of dementia. I won't go into the details about my wife here, But it is good that you are 'talking' here about what you're going through. You'll shortly have someone here with as good of advice and understanding of your situation as you'll find anywhere. A warm welcome also.
I don't know how much you've researched the various forms of dementia and how they're presented by those who suffer with them, but from what I've been able to find, so far, the sky's the limit. The DX process takes forever. Once there is one, if there is one(which NOBODY wants one!), the spouse is in for the ride of their life. So, the best I can offer is the best of luck to you and welcome to the board even though I know you'd rather not be here.
rachelle, Welcome to the group. I am sure you will find lots of information here, not to mention caring! My DH was dx'd 2 years ago and is doing quite well considering. He does ramble on when I ask him something and goes into far more detail than I want. lol. I don't know if that is part of Alz or not but I take any changes as being part of the disease. I'm sure others will be along and be able to give you more info than I can. Again "Welcome".
Hi & Welcome Rachelle, I am sorry for you need to join our family, however, I am glad you have. My husband is 58, he suffers from FTD. He started losing his memory when he was 50, however, the last 2 years he has had a major decline. I am sure you will find everyone very helpful, kind & non-judge-mental. Please feel free to post at anytime. Again Welcome. Kadee
Hi Rachelle...so glad you are here! So proud of you getting help for yor LO as the sooner you start on medications the better he will be....have your PCP recommend a neurologist who specializes in dementia. I have learned so much from the wonderful caregivers who post and know they will help to make your journey...whatever the diagnosis...easier.
Welcome, Rachelle. My husband was diagnosed at 60 with Alz. He is now 62. This site has been a lifesaver for me. I'm glad you found it. Has your husband had any diagnostic tests or seen a neurologist? I agree with scs that the sooner he starts on medication, the better.
Welcome to my website. First let me say that it is vitally important to get a proper diagnosis, so he can get the proper treatment. I highly recommend taking him to a specialized Memory Disorders Clinic for a complete cognitive and medical evaluation. Log onto my home page - www.thealzheimerspouse.com - and look at the resources on the left side. Scroll down until you come to "Find a Memory Disorders Clinic in your area". Click that and see if there is one near you. We drive 100 miles round trip every 3 months to see Sid's doctor, because he is at one of the best memory centers in Florida. It is worth the trip.
To answer your question about your husband's long explanations and lack of eye contact. The long, convoluted explanations are part of dementia. I recently wrote a blog about it - "Making Mountains out of Molehills" - Copy and paste this link to read it - http://www.thealzheimerspouse.com/Mountainmolehill.htm Sounds like your husband is unable to organize and explain his thoughts, which is why he ends up with that rambling scenario. And he can't remember what happened or what he was going to say. Lack of eye contact can be related to inability to sustain attention. This all points to dementia of some type, but as I said - I cannot emphasize enough the importance of a proper diagnosis.
As for my website - You have come to a place of comfort for spouses who are trying to cope with the Alzheimer's/dementia of their husband/wife. The issues we face in dealing with a spouse 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.
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". There are 3 sections for EOAD members - two of which focus on the young teens whose parents have EOAD (early onset AD). There is a great new section on informative videos. And an excellent section - Early Onset Dementia - A Practical Guide. Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. Log onto the home page daily for new blogs; news updates; important information.
Welcome to this site. My husband (he just turned 60) has FTD and was diagnosed a little over a year ago. When you ask him a direct question he cannot really give a coherent answer. His usual response is "I don't remember" or "sorry". He also doesn't always look at me when he talks. He really speaks little more than very short sentences without any descriptive words involved or is asking a question--which sounds more like a demand. If you ask a detailed question, he will agree with everything you say.
Hi Rachelle, Welcome!!! Please follow the above advice and see a specialists ASAP. You did not mention if your DH has had any type of testing done such as MRI or PET scans. Proper medical diagnosis will allow you and your DH to access the best treatment available for his condition. My husband does not usually have rambling answers and seems more like deb112958s husband. He answere with sorry or a confusing 'Well maybe yes someone called...' He is 58 and was diagnosed with EOAD 12/07. Please let us know how you are doing with all of this....Sue
Hi Rachelle. welcome to the group. i also agree that you must do whatever it takes to get Dh into a neuro for followup and testing. sooner than later. early medications can help him hold onto his abilities much better than without - you are right to be concerned. only those of us who live dayin/out with someone can see anything significant in behavorial changes. dont let them convince you its your imagination. if you go thru the tests and its negative glory be. if not -getting help sooner is always a plus. my DH was called by a clinician the master of diffusion:) you asked him a question he had 100 ways of skimming around the reply that was usually anything but what you needed to hear. so yes they can avoid eye contact to concentrate on whats being said. or to give away the fact they are in distress over the issues of knowing their memory is impaired. must be quite scary.
Welcome, Rachelle, to a great site for help w/dementia concerns. We're all here to share the journey. My hb has vascular dementia. He gives long rambling, monologues and can't clarify if I ask questions; so I don't any more. Our phone lists numbers that have called; so I've learned just to check the phone for #s and call any back that I think might need or have info for us. He's not supposed to answer the phone if he doesn't recognized a name or if it doesn't show a name. Took awhile for him to understand that.
Rachelle, I'm sure glad that you found this site. It is a good thing to visit with folks who have these kinds of things in common. There is a lot to read here. I am kind of in the same boat as you. DH (dear husband) thinks that I have the problems and that he does not. He won't talk with his doctor about the problems that he does notice. I also think that it is FTD. I am 52 and he is 56. Many of us feel that the problems began many years ago. In our case, may be 10 years.
Today was a down day for him. The last two days were "almost normal" days. He probably spent one hour deciding how much air to put in the tires on our truck. We had some used tires put on and the shop put 52 in them. The tire says max 80. I suggested to him last night 60. He called me twice at work wondering what he should do. He didn't like the 60 suggestion so I told him to start at 55 and then work up if they need it. During the same conversation, while still discussing air pressure, about two minutes after I suggested 55, he said to me "what would you think about 55? We could start there." My response was, "I think that is a great idea, that's what you should do." I see this happening more and more often. these are the little things that, on a bad day, make us know that there really is something going on.
Memory wise, he has a great long and longer term memory but drops much (not all) of the very short term memory. Like in this example. He seems to have most of his trouble with the moods, anger, personality, reasoning (like the air pressure) and these kinds of things. He has the worst problem trying to make a decision. What glass to use, what to drink, what to have for dinner, what to do while I'm at work. If I ask if he wants coffee or tea, he will get very confused and say I don't know. If I say does coffee sound good to you, he might ask for tea.
My husband always liked gadgets. Lomg before I picked up on symptoms he started just putting away gifts like an elctronic tire gauge I bought for him, a bike speedometer from our son without ever using them. Way back he could not understand how to use new things, but still was able to cover up by hiding them. I still come across something he hid away-unused.
Thanks to everyone for your welcoming comments and responses to my query. Mary---decision making is a major task for my dear hubby too. I am learning (slowly) to reduce my expectations in this area. When Joan wrote the blog about making mountains out of a molehill, I thought she'd maybe been at our house observing our daily interactions! My goodness, it amazes me sometime how long it can take to decide about something very simple. I realize that dear hubby does best with a very regular routine---with very little activity in any one day. Unfortunately some days just don't conform to that. A change in plans or an additional activity can set off a lot of anxiety and stress. Recently someone asked us over for lunch following church----we couldn't possibly manage to fit that in according to DH . . . it would be "too much". Ditto with an invitation from one of our grown children to attend a recent film. Not that his days are very busy but he really can't manage too much without either experiencing a lot of fatigue and/or emotional meltdown. Longer term memory is fairly good but he has difficulty at times (more so when tired) comprehending or retaining information just shared. I used to tell him that I'd just told him that but mostly now I let it slip by and try to answer calmly without showing impatience or irritation in my voice. Sometimes I do fine and other times I slip up.
Getting a diagnosis is the challenge. Our grown children have all commented on his various behaviours but only a couple are close to putting the puzzle pieces together. A friend and a relative have expressed concerns which I've shared (along with our children's observations) with our doctor. My husband has occasionally admitted to things such as his inability to multitask or memory problems and has even asked me to go along to his next dr appointment with him. But when the apointment time draws close, he either can't remember our conversations or doesn't see why I need to go along and bottom line doesn't want me to go. Our doctor has raised the topic with hubby but didn't get too far . . . according to hubby I was exaggerating the problems etc. The doctor is concerned and is quite willing to refer him on for assessment. It's just getting an opening to do so. I think we need one or two more people to express concerns directly to hubby as well as me.
He has withdrawn socially from many friendships. He still interacts with people but can't sustain an in depth conversation and avoids many situations he used to enjoy. His self care fluctuates ie bathing or showering is very hit and miss. Right now it's happening every few days but sometimes he will go two weeks without a shower and sees nothing unusual about that. Changing underwear and socks goes in cycles----if I remind him, things improve but if I say nothing for awhile, then he just puts on what he took off the night before. Ditto for pants. He tries to help around the house and has a few things he does regularly (albeit slowly). He's offered to do laundry but he can't remember what items shouldn't go in the dryer so I had to tell him to stay out of that room! He enjoys gardening (it's more like puttering in the garden) which is great although soon the weather will be too cold to continue that.
In the morning my husband makes himself breakfast. Take out a bowl (for him) and a plate (for me) and put two bananas out, one on the plate. Cut the second banana and put the slices in the bowl (in exactly the same pattern every day). Stand around for a while.
Go to the refrigerator and take out the strawberries and cut them up and put them in the bowl. Put the strawberries away. Stand around for a while.
Find the cereal (doesn't always manage to do this on his own). The cereal is in a container and not in the original box. Take chunks out and make the chunks smaller and put in bowl. Refill the cereal container if it is even half empty. Put the container away. Stand around for a while.
Put the bowl on the table. Stand around for a while.
Get a spoon and put it on the table. Stand around for a while.
Etc., etc., etc. Lots of standing around for a while. If we are lucky he remembers he needs milk in the bowl. If we are lucky he remembers to get orange juice and his pills and take his pills. Lots more standing around for a while.
It can take half an hour or more before he gets to sit down and eat breakfast. And I arrange for him to have the time. I check that the pills have been taken every day, without him noticing it if possible because he hates that I'm checking up on him.
Starling, I didn't realize you live in my home! Must be as the guy sounds just like mine! Does he cross his arms during the stand around? I think it is a holding on pattern.
Starling, I love it. It sounds like he DOES (eventually) remember all the steps.
My DH, when asked to set the table for breakfast will get a blank look on his face, look at me questioningly till I ask him to get things out of the fridge (naming each one). By the time he's got butter, cheese, milk out of the fridge I've usually got the rest of the table set. And there's no way he could ever remember to take his pills, unless I put them on the table in front of him.
My DH can usually fix his breakfast, always the same, coffee,English muffin with margarine and strawberry jam, orange juice. The problem comes when I sleep a bit latter than him. He sleeps so much in the daytime and evening he often gets up earlier than I. If he has eaten breakfast, it is forgotten and he eats again when I do. This can be a problem as he is already overweight. He gets upset if I mention that I think he already ate. I see the dishes.
maryd, sooner or later they all loose weight. If he is a bit heavier now than he should be, it really doesn't matter.
Jeannette, he almost always remembers all the steps. I just have to make sure that he has the time he needs to remember, so I try not to schedule things for the early morning. We will see if the handyman/contractor coming tomorrow will be a problem. I'm not sure how early he will be since I wasn't given a specific time and I'm not sure how long his drive here will be. But this might be the last time I let anyone come here to do work before 10 am. I already know not to make doctor's appointments before 10.
Last night we slept at my son's house after babysitting; this morning dh was up early and so we went ahead and had breakfast before son and DIL (who had been up in the night with the baby) were up. Dh wanted to leave for home as soon as it was light. But when DS and DIL came downstairs and started making coffee and having breakfast, DH said we should really have some breakfast before the long (one hour) drive home. So he had another breakfast while I joined them for coffee. Tonight I had just finished cleaning up the kitchen after a full dinner of meat, potatoes and vegetables, and we had eaten it all up. I went back to the living room to get my book and he stayed in the kitchen and was saying that we really ought to have some dinner. Finally I got him to (very reluctantly) settle for an apple. He could do six meals a day, easy.
After he goes to bed, take his clothes and put them in the washer and lay out clean ones for him. If he starts to smell, spray him with Oust. This stage doesn't last long, and you can't get them to do what they should because their reason button is broken and they don't want to do those things or let you know that they have forgotten how. A lot of 7-10 year old boys hated bathing too.....
If you haven't read all of the "Caregiver Tips" on the left side of Joan's website, please read them now. These are the suggestions that have been tried and been found to work for us. A lot of them apply to you right now.
They use up all their energy trying to appear normal and tire very easily. You can't push them any more. If you have specific questions, there are a lot of us that will be glad to let you know what worked for us. Take care! (((HUGS)))
Agree, Rachelle, my DH went through the stage of refusing showers PERIOD...FINAL ANSWER! His feet smelled so bad, I told him I refused to sleep in the same bed with him. He would disagree and said I smelled my own feet.
Now, that stage is gone and he dutifully steps into the shower every time I ask him. Just know the next stage is bathing him yourself. Big mess..but we do what we have to do. So happy that Hospice comes in several times a week and spares me the job on those days.
my husband knew something was wrong with his memory several years ago,but our family Dr.said it was from stress of three surgeriesand other factors.we finally changed doctors,the new one immediately ordered a MRI which showed the AD.He wasput on Aricept and cymbalta,but not much change.A new doctor took over the practice and added Namenda and zoloft,stopped the cymbalta. He showed an amazing improvement.When he does make a mistake he'll just laugh and laught the neurologist says that is typical.Do any of you see that in your spouse?Also. he seems to be worse on rainy days,is that typical? The neurologist wants to add Axona on next visit.I will be glad for any improvement,no matter how little.He 73 and in excellent health,I only hoope my health remains decent so I can care for him.
Just read your comment "if he starts to smell, spray him with OUST". I am still chuckling. Can you elaborate? Do you mean spray his clothes while he is wearing them? I have to admit, I consider myself creative, but I wouldn't have thought of that one!
Oust, I love it, Mary. I have never seen it in a store but I just googled it and I see that it available here and I'm going to get some, just to have on hand in case of emergency.
glad mary put it in writing. i spray fabreze on him dressed as well but waist and below, or on his pants from behind as hes walking..:) mary good minds think alike.. hahaha.. the things we do! loveit. if you spray make sure its away from the face please folks. from the back works nicely:)
divvi
ps spray the mattresses with oust or fabreze when you change linens! and let it air some before sheets it helps tons to keep the bed fresh!
Yes, I spray the back of him and the front of his pants with Oust on the days he doesn't shower (every other day). This spray says it kills 99% of the germs, and so every other night I stand in the center of each room (without people in it but me) and turn in a circle, spraying the ceiling - that way the mist catches dust, dog dander, etc. as it works its way to the floor. As Divvi says, I spray Fabreeze on the sheets. I spray around the toilet and waste baskets. I even lightly spray the dogs after they come in and have been running! They don't mind at all. It is a light spray, folks - on everything! - not heavy duty!!!
I'm not a germaphobic, honest - it is just that I have a sensitive nose, and my eyes will burn and water with dog dander, so I need to control it. After spending $$$$ at the opthamologist and expensive eye drops (none of which helped) I found that this stopped my eyes from burning and running! Occasionally I have to spray my office too. Others here come and borrow my can on those days that there is "something" in the air to spray theirs. Another woman told me I saved her several hundred dollars in eye medicine! It's amazing what allergies pop up as we get older!