Hello again. My 50 year old husband has not been diagnosed but I am going to pay for COBRA insurance and start the process. Sometimes, though, he seems just fine and just when I think I'm making all this up he does something very subtle or really strange. Is it common for a caregiver to doubt herself in these early stages and for DH to have good days/weeks and bad days/weeks? I have worked to reduce stress and it seems to be helping but a month or so ago when things were really stressful after he lost his third job he was very forgetful. He seems better now. Is that normal to see more symptoms when stressed versus not stressed and can symptoms come and go?
Thanks again...don't know what I'd do without all of you!!!
Marise, I think most of us here experience the good days, bad days syndrome. Almost every day, I find myself doubting the diag. then in an instant reality hits me in the face. Stress definitely makes things worse.
Yes, symptoms come & go all the time, and others will tell you that they see nothing wrong--and think you are making it up. And yes, you doubt and you doubt and then, as just mentioned, it hits you in the face. Yes, stress can make things worse. As time goes on, you should make your goal to keep your home as calm as possible. It will not always be easy--you can count on that, but whenever possible, it's best to try.
Sounds about right to me. I've been told at least 3 times in the last 3-4 weeks that DH seems so well. Are you SURE he has AD? And I don't know if I'm being a bit paranoid or not, but it seems as if there is a little 'look' that goes along with the question. I always answer very sweetly, oh, yes, I'm sure. The diag has ben confirmed by 2 different doctors. Then I smile and say "but I appreciate your concern." Won't be easy! And yes, stress does aggrivate the situation.
They ALWAYS look pretty normal to anyone who doesn't spend much time with them until the end stages when the physical symptoms start showing up.
When I went public with my husband's dementia, the one neighbor who responded, "yes, I thought something was wrong." was the one who spent the most time with him. They still come and ask him out for walks with the dog(s) and he is still welcome to just show up when they are in the front yard doing chores.
Marise-- Doubt yourself no more. Even without an official Diagnosis, you know him. You know what was normal and what isn't anymore, even if the issues come and go. Keep in mind that others don't see him, live with him, know him like you do and be aware that when around others he will be working hard to appear okay. You'll find, coming to this site will provide support, guidance, tips, laughs, and the opportunity to ask anything you need to; vent when you need to; offer support to others when you can; and generally stay sane. You have to armor yourself against the self doubt because you will need to stand for him to be sure he gets the care he needs and to prevent interference from those who 'DON'T GET IT'. Your first focus for him has to be to take care of yourself. If you go dopwn there is no onew else stranding for eiother of you. Your second focus is looking out for him. You can understand and feel for the family and friends who are concerned, but you cannot focus on making them understand or accept what is happening at any given time. Getting your DH through is where you have to focus.
Coming here is one of the best places you could have found. Welcome to your safety net; your new community; new friends. <hugs>
Marise, for me there has never been denial since the diagnosis, but sure before it was confirmed, because of his age, and the day's/weeks where he was normal I wondered if maybe I was seeing things. But in my heart after they started exploring AD I started to understand that yes that was a possibility. Honestly when someone so intelligent does something so off the wall like the things my DH did, you know it can't be just a bad day that there has to be a reason for it. Thats why I pushed and pushed to find an answer, granted I don't like the answer but denieing it isn't going to change the fact that AD is part of our life now. His Mother was in complete denial and told me I was crazy! She even paid for his 2nd opinion. (we didn't have insurance at the time due to selling a business and when trying to get insurance he was denied due to Post Polio Sequal) and we had just paid cash for the MRI and Pet scan so I was like we will get one later! She wanted to prove me wrong, Total melt down when the 2nd confirmed the 1st diagnosis. At the time she was dealing with FIL with AD and even though she saw some of the issues she was still in denial. As I said in a previous post to you, It could certainly be something else, but no matter what you need to find out. Meds may slow down whats going on, if in fact that it is AD. But without the diagnosis you won't know. Now with a diagnosis you may still doubt yourself, I don't know as I said for me that's not the case. Unfortunately because of your DH's age you will have even more people say, Oh are you sure he has AD? (like your the flippen crazy one!) I even had a Surgeon tell me that he looked normal............. Huh? In my opinion (again I am younger and see things as pretty black and white) that most people think someone who has AD is drooling, babbleing, jibbering mess and if the don't see that then they don't believe they have a medical issue! So I am here to tell you, you have a long road ahead of you and even with the diagnosis the issues won't stop. But with information, support, love and kindness you will survive this. Keep pushing till you at least have an idea of what may be going on with your Dh. hugs Rk
To answer your other question about stress, as others have said yes stress can effect an AD LO as well as effect you, so keeping the stress level down will be good for all.
Do any of you find yourselves having alz-dar.. you know how some people say they have gay-dar - can spot a gay person in a crowd? (this isn't a slur, at least I don't THINK it is; I've had gay friends of mine remark that certain people do..)
I think some of us have alz-dar. WE tend to be able to spot people who have not been diagnosed or in whom no out-of-the ordinary behavior has been noticed. I have have had two friends in whom I spotted problems long before their families did. But you can't go up to them and say "I think your mother has dementia" !
Yes, briegull, I think I have alz-dar! Was in to see my doctor this morning and I know I spotted 2 men and 1 woman who have some form of dementia. Also have two male friends that I KNOW have it - but as you say, you can't just go up to them and tell them or their families!
Absolutely I can! I can beyond a doubt in most cases. Have you also noticed how easy it is to walk up and start conversing with an Alz. patient? My daughter, adult granddaughter and I were checking out memory care facilities recently, and later they commented on the fact that I had talked to so many of the residents there "as if I knew them". I explained that - in fact - I do believe I know them,...all of them. We're in this together, and I felt quite comfortable teasing with the men, complimenting the sweet woman on her blouse and cheering on the table-top bowling team. But, without realizing it, my girls shy'd away from them, just as our friends have shy'd away from us. They're wonderful with my DH, but they "know" him. They found it so interesting how comfortable I was with 'those people". (sigh)
Absolutely do have alzdar. Took me a moment to realize what you meant with the term. I can spot a dementia person a mile away. I have to bite my tongue not to say anything. When the person starts really acting out and the spouse is stunned it is really hard not to interfere. I did that once. I suggested to a good friend that her husband might have HIV and she never spoke to me again. He was diagnosed with HIV within the month.
briegull, that question came up not to long ago on another post and Yes I have both (been a hair stylist for 25 years), and I can stop 'em' a mile away! Even my gay friends say I am better at spotting a gay person than they are. LoL. Seems like since Dh was diagnosed I can see signs in certain people. Unfortunately most are still very young and it hasn't went to far. Mostly people who tell me Oh my DD or DM died of AD. I am thinking oh............................. Really. One is a fairly good friend and I pray it doesn't happen but I can see where it may. Of course many are easy to spot cause of that far away , puzzled, off in another world look. Rk
Yes, I have alzdar too. Maybe not in the very early stages but in moderate AD by that far away, puzzled, off in another world look. Now what do we look for in gay-dar?
YES!!! You will think you are going crazy, or that he is just being lazy or that he is TRYING to make you crazy. My DH just turned 56, started showing symptoms about 3 years ago - was laid off of 2 jobs, etc. Doctor thought it was stress and he was on an anti-depressant for a year, but it didn't help. I finally asked for PET scan which was pretty definative as far as showing the Alzheimer's (or as best a diagnosis can be.) I agree that when you LIVE with them, you know something is not right - even if people who see them occasionally (like other family members) think they are fine. Hang in there, you are not crazy!!!
I can understand from the way the word is used, but what does alzdar mean? Is it an acronym or what?
I also seem to notice when people have dementia before others do, but I figured it was because I was with DH all the time and I recognize the symptoms.
Right, GC. As radar can pick up planes on the horizon, say, so some people are (or think they are) able to identify people who are gay in a crowd.. gaydar. So if you can pick out AZ patients, Alz-dar. Not as fun to say, but you get the concept.
I mentioned Alz-dar to a friend who is the mother of an autistic child. She coined the word Autdar. With one out of 150 children being diagnosed in the USA with Autism these days, (and it's increasing), she said she can walk through the halls of the elementary school and spot young children with mild to moderate autism - who are being mainstreamed, thinking they just have an attention deficit disorder.
SO, whether you live with a GAY person, Autistic, Alzheimer patient or someone named RAY (radar) you develop a seventh sense for others with the same affliction.
I "diagnosed" my SIL's father a year before anyone else knew there was something wrong. This December I was asked for info about dementia drugs to be passed on to the family doctor in Honduras. I literally had never spent more than 10 minutes with him before because he doesn't live in the US, and we tended not to pass during visits here.
7 years ago when we first consulted a Neuro he diagnosed Alz. early stage. 6 months later I took him to a University Hospital at Cleveland and there testing report was his symptoms were not consistent with Alz. and said no. Next Neuro thought LBD except he was not having hallucinations. He did have Parkenism dia. from beginning. Finally, he was dx 2 years later with Parkenism with Alz. and Vas dementia.
Marise, search my postings. We know when things arn't right. I have been trying for a long time to judge his moods and avoid anything that might set him off. We are not diagnoised yet either. He does such a good job and uses a lot of energy acting normal at the doctor's office.
Good luck.
Mary!! (I'm the Mary with the !! on the end, from Montana. Not to be confused with the funny and exciting Mary without the !!.)
Mary in Montana (Mary!!) if you are talking about me, thank you so much for the compliment! <grin>
The smarter our spouses are, the longer they can hide their symptoms, even from the doctor! My husband managed to fool everyone but me until 2 1/2 years ago when he was at stage 5. It took the neurologist to trip him up. He managed to fool his primary care physician and opthomalogist for two years! They thought he had MAYBE had a minor stroke! I was so upset when they believed him over me 3 1/2 years ago. I spent a year documenting everything and got the tests needed to prove he had AD.
And still he could fool people for another year at stage 6!!! But I had the diagnosis, and have kept a written log as he declines. Because he has held out so long on getting diagnosed, he decline is very rapid. Now, his primary care physician doesn't think he'll make another year. Neither do I. Talk about fast! No plateaus for him!
Make certain to document all personality changes, as well as anything out of the ordinary, including the way he treats you and his food tastes. Write it down for the doctor. And have a written request for an MRI and PET scan. Then, you have written proof should you need it later.
We try not to get them upset if we can help it. As I've said before, Flexibility is my new mantra. If he wants to sit in the bathtub for an hour, when we need him to be up and dressed, we rearrange our plans and let him. If he wants to go to bed at 8 p.m., I let him (when I don't show up in 15 minutes, he'll come back to the den and sit in his recliner until I go to bed). <grin>
It's hard, but you have to find the humor in most situations. It is the easiest way to get through this.
Oh Marise, the nightmare of those first years seeking answers and DX. I was constantly doubting myself and angry as hell at DH as I'd blame him for presenting himself like he had AD when it was really drinking, or laziness, or something who knows what. And then I'd get mad at myself for blaming him, and get in touch with the compassion again, and then the cycle would repeat. The doctors, friends, relatives, seemed like everyone colluded to make it worse. I really thought I would lose my mind. Luckily I was in a great AD support group for early onset couples when we got a second opinion from a neuro who told DH he didn't seem to him he had AD after all his (the neuro's) mother had AD and he didn't have any of her symptoms. Huh? This is a neurologist? He then said he felt it was from alcohol use and then that brought out my anger again esp. since our marriage really was suffering at that point. DH stopped drinking completely so hopeful that it would reverse, NOT. This dr. said we sholdn't have put our house on the market, and that sooner or later if it was truly AD we'd know, so why not just WAIT. WAIt? I wanted him to get out of his job while he was still on top, especially to reduce the enormous stress he was under, and move us to a place we could afford which would be easier living, etc. etc.
Whoa, in those early days I stopped working (I had my own bs. at home) and spent all my days trying to straighten out our finances (I knew something was wrong when he didn't know where he put a 25K CD and hadn't filed our taxes at the extended deadline. I went through the whole house trying to figure out the financial mess, finding uncashed checks from years, filed unclaimed property claims, later found lots of back taxes due, and then by the time he got home at the end of the day I hid everything from his site so he wouldn't be stressed by it. Whew! All the while mch of the time he seemed perfectly fine and I wondered about my sanity and his ethics.
I renovated our house to sell, my back went out from all the moving and packing I did taking great care of his book collection he'd obviously spent a fortune on in the previous couple years - totally out of character for him, and I'm still learning the extent. And he would watch me do all this work while occupying himself with little tasks like raking the leaves in one corner of the yard over and over. A nightmare.
Every phase seems to have its own hell. Gosh, it's good to look back at that and be thankful that part is over. But a couple weeks ago when his MRI still didn't show anything (even though it's so obvious now) I still thought for a moment that maybe he doesn't have dementia at all and that perhaps he's some sort of psychopath who's got his own personal cruise director. Yeah, this can make you feel you're in the twilight zone.
Terry, it's been a few days since you posted this but I just saw it and it sounds so familiar. Just posted a similar story on the thread about financial mismanagement. And I love the bit about watching you work and raking the leaves in one corner of the yard over and over. My DH likes to cut sticks (that I've picked up from the lawn or flower beds) into smaller pieces. He also loves to cut cardboard boxes into small pieces before throwing them away. (He does take out the trash however)
Chris, no but it sounds familiar. DH had PetScan early 2007 and an MRI and another MRI just recently. He's soon going to be seen at the only memory clinic near here since the nurologist we found out here is now moving to Seattle. Will check it out and see what they say. FTD or AD both neurologists think it is FTD but who knows. I waver. I do think I can determine the stage now. When we moved here Sept. 2007 to Eureka Springs I think he was in stage 3. I think now he's in stage 5. Odd that none of the doctors we've seen has talked about stages.
terry, they won't talk about stages unless you explain to them that you are educated. And frequently not even then. Ask THEM if they know about stages. <grin> It gives them a heads up that you understand more than they think you do.