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Originally posted by: Snorky
Yes, by all means you should be here. There isn't a better place to vent and ask questions as there is a lot of experience here. Don't be ashamed of yourself for any of these feelings as we have all been there just like you and every stage is important as it happening. Every stage is very hard on us to watch our loved ones changing before our eyes.
My goodness, if the Neurologist can't diagnose him I think I would find another one!! Sounds like he has some serious issues. Has the Neuro given him any tests? Does he have a regular Dr.?
I can't tell you what questions to ask except the obvious, why is his memory failing. You might write out your concerns and give it to the nurse before you go in, that way you won't have to ask in front of your DH. I learned to do this each time and it would give the Dr. a better idea of what has been going on. I would write whatever you can think of that is a change or concern.
We all have stories like yours so don't feel alone. Good luck tomorrow. Let us know what the Neuro said.
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Joined: 1/14/2015
Posts: 40463
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Originally posted by: SHardy
I don’t really think I should even be here. Today I’m upset and confused and hurt and a whole bunch of things I cannot put words to . I wrote on here about my husband last October. He had been having some problems, went to the neuro, didn’t know what questions to ask. Came here for advice. Well, we went and left feeling frustrated. He had no diagnosis for us. We know he has “white spots” on brain scan and were told it is 100% not normal. And were also told they have no idea what it Is or what caused it. I could care less if he has white or green or purple spots on his brain. What I could care about is sure as I’m sitting here I’m losing him.
Last October he started leaving faucets running and car doors open (as in getting out of the car and walking away with the door open) and leaving the car running because he forgot to turn it off when he got home. Now, he swings from here to not here but him being here is less and less. He gets this glassy eyed look and I know he’s not there when he has it. His kids say his eyes are fogged over. They just look flat like nobody’s home. His short term memory is not great.. he goes back to the neuro tomorrow, I decided maybe I should try and cover this week before his appointment to figure everything that he does that is off. Yesterday a friend called he said he was at the Sinclair here in town and he looks at me and says “Is that Common Cents?” The “Sinclair” has been here since we moved here over 30 years ago he knows where it is, who owns it etc, has probably been there hundreds of times,..this is a very small town. But for now, He has lost where it is. I explain to him where it is and he says Oh yeah. He came home from work (yep he still works..don’t know how that ‘s going) and I had made some Moroccan tea. He drank a large glass of it, he then went to the garage for a half hour or so, then I called him and said dinner was ready. He walked in and said “Is that tea finished yet?” I ignored him and he washed his hands and then came in the kitchen I said he could pour milk for dinner. He said he thought I said I was going to make tea and the whole point was to have it with dinner. I told him “No, it wasn’t for dinner and he had already had a glass.” No, he said he had not..to which I said he had and as a matter of fact he left his glass in the family room and if he wanted tea with dinner he could go and get his glass and have tea. . He goes to the family room and picks up his glass which has about an inch of tea left in it and tastes it and says, you’re right I did have tea, I know because I thought it tasted like cough syrup and then he looks at me with those blank eyes and says “why can’t I remember drinking this?” I tell him I don’t know and it doesn’t matter if he can remember it or not….
Sometimes just out of the blue he is mean. We were at our daughter’s house and he was going to put on one of her husband’s shirts to get dirty in and I asked him for his shirt so I could hang it up and he started swearing and telling me to keep my thoughts to myself. The entire room was dead quiet. What he said didn’t make any sense, the kids were horrified. This is not him. And later, he didn’t recall what he had said or what he was talking about or why he said it. I have never admitted it to anyone else but I also found he was wearing the same clothes for a week or so at a time so now I lay out clothes for him. I also discovered he was not clipping his toenails…. He said he couldn’t. I don’t know what that is about but I know his toenails were so long they wrapped way over the end of his toes. I clipped them and made a mental note to clip them the 1st of every month.
I DON’T WANT TO BE HIS CARETAKER!!! I WANT MY HUSBAND BACK!!
I love him. We have been together over 30 years and I would literally give my life for him. So I thought about the neuro visit and I thought why?? What can they say?? Drugs??? I don’t think so. So is this just it?? Are we stuck? Is there nothing we can do? Is my life forever changed and I cannot get it back???
I tried cutting back on the number of people we see at a time. We had dinner with just one son. We talked. Husband didn’t join the conversation. Son asked him direct questions and I replied after a while “I don’t think he heard you” …his hearing is fine….. But I am beginning to think he cannot follow a conversation with more than one person. I am spending more and more time explaining stuff to him….
What do you suppose could be wrong with him and why do you suppose a very competent neurologist can’t figure it out?
Sorry this is long.. Sorry I’m whining.. Maybe I should be ashamed of myself for that.. I know a lot of people have it a lot worse..I am very thankful he is still here and will take him however I can have him.. Any advice is appreciated..
SJ
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Originally posted by: ElizabethNC
quote: So I thought about the neuro visit and I thought why?? What can they say?? Drugs??? I don’t think so.
SH, dear, we all understand your frustration, your fears, and your feelings of hopelessness. But the worst thing you can do is to do nothing.
I would give the neurologist another chance. Sometimes it can take a while to get an accurate diagnosis, and YOU play a key role is making this happen.
What you have written here is exactly the kind of first-hand observation the neuro needs to correctly evaluate your husband.
* Write these symptoms and behaviors out in a one- or two-page bulleted list (like this).
* Make a note that the neuro should NOT discuss this with your husband without meeting privately with you first.
* Hand the list to the receptionist and ask that it be attached to the top of your husband's file so that the doc sees it first.
What can they say? With this information they may be able to tell you what kind of dementia is affecting your husband. They can recommend treatments--including drugs--that can make a remarkable difference in your husband's behavior and your lives.
Improvement may not happen overnight, but if you keep coming back to this forum you will find a tremendous amount of information and support.
Are you stuck? It may feel like it at times, and yes your lives will be changed. But with proper diagnosis and treatment, and the kind of living skills you can learn from some of our members (look for Cathy J.M.'s posts!!), you and your husband can have many happy years together.
And don't be ashamed for "whining"!! We all do it from time to time, and the great thing about this forum is that everyone understands.
Keep us posted. It can get better.
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Originally posted by: jfkoc
None of this is easy. It is frustrating, it is sad,it is painful, it is lonely, it is tiring. It it not always the first or the fifth Dr that figures out what it wrong.
You are the caretaker and your husband the way you remember his is not coming back. There is a lot of grief in that. We have all felt it.
So what you do is join with us on this road and share. You give and get help here. This is the most informed group of people you are going to find. We are all ages, all socio-economic backgrounds races and religions. The important thing we have in common is trying to be a good caregiver to someone important to us. Thats it.
You did not mention if your husband has had a complete medical workup. Often issues other than dementia cause problems ....they can even cause dementia.
Something else to think about is getting legal things in order. POA and living wills etc.
Take deep breaths...you are going to feel better as things start to fall into place.
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Originally posted by: ElizabethNC
Oops. We cross-posted. I'll just say it again:
Keep coming back. It can get better.
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Originally posted by: SHardy
Snorky, thanks for your reply.. it made me cry..we asked those hard questions in January at his second neuro visit… and all we got was that they had no answers… he has had a multitude of tests.. MRI’s ,CT’s ..pet’s or something like that …They know there is a memory problem but cannot say what it is.. I am almost to the point of wishing they would just lie and tell us something instead of saying they don’t know. Last visit I wrote a list to the Doctor ahead of time and it was what it was. I feel guilty like I’m tattling on him if I share what’s going on... I know the dr cannot know what’s going on if someone doesn’t tell him….. And yeah, he has a regular Dr and a cardiologist.. Reg dr is who referred him to neuro..
It was always US, people use to always say they never saw one of us without the other.. I remember going to Burger King once and the manager asking where he was and I said home and he was shocked and he said he had never seen me without him…..Now..it’s different..
I guess I just feel very, very alone.. I usually do pretty good with feelings as long as I don’t have down time.. today is my day off and it’s not a great day.. thanks again,,, going to go remow the lawn..SJ
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Originally posted by: rollerblady
SH ... Welcome! You will find much wisdom here, though it seems you have not found it at your neuro's. My husband is on his third neuro. The first was a "good ole boy" who liked to talk golf and thought hubby was great. He gave him an Aricept starter pack for his reported memory problems, but when hubby said he didn't think it helped, after three weeks, the Dr said forget it, drugs don't help much anyhow.
Neuro #2 was the silent type. At each appointment, he
gave hubby a mini-mental test (count back from 100 by7's, draw a clock, etc.) recorded the decline and
said come back in 6 months.
Neuro#3 was recommended by our fine cardiologist, and is in a large city an hour away ... WORTH THE TRIP! At each appt, he examines hubby carefully, watches his gait, looks in his eyes, asks how he feels, and then talks with me about meds, adjusting as needed. He's older, but up on latest research and interested in discussing everything about dementia. He's great.
So DO persist in your search for the right doctor for your husband. If the neuro you have is the only game in town, arm yourself with pointed questions to elicit the information you need. Drugs DO help, really! Yes, you have a long journey ahead, and No, he will not be the man you married much of the time. But there will be good days too, so cherish them.
There is lots of good information on this site, and if you look at the stages of Alzheimer's, you will likely find a description of your husband somewhere there.
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Originally posted by: RHW
GET A NEW DOCTOR AS SOON AS POSSIBLE. THERE HAS GOT TO BE ANOTHER NEUROLOGIST THAT YOU CAN TAKE HIM TO. My DH has wonderful neurologists who listen to me and treat him with respect. I don't know what we would do without them. If you have a teaching hospital near you they usually have a wonderful neurology department. Good luck.
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Originally posted by: SHardy
Neuro visit today. Dr. walks in and calls him the mystery man.. Because he doesn’t know what’s wrong with him…then he tells my husband how good he looks.. tells him he looks very fit and healthy, muscular, etc, etc.(we laughed later that if it had been a different setting we would have thought he was hitting on him) Asks him if he’s having memory issues still and husband says yes ... Husband says he thinks maybe it’s just because he’s getting older… BTW: he’s not that old..60
I have supplied the info on what’s going on and he looks at me and says, “Well, does anybody besides you notice this because he looks fit and he still works so he must be doing OK” I feel like OMG.. I ask him if he would like me to ring up any one of our five children and he can speak with them.. he wants to know about what happens when he gets that glassy look in his eyes where nobody’s home and he suggests that if there is something wrong with him maybe he should say he cannot drive and maybe he should say he cannot work and do I want him to take all of that away from my husband….. I just looked at him and remained silent.... guess I was almost speechless ..my instinct was to either leave or grab him by the throat and explain things so he could understand, ….He ordered a brain EEG and sleep study….
So, he sees his internist on the 13th and we will be getting a referral for a new neurologist. Did have a good talk with husband on the hour’s drive home. it actually turned out to be a good day.. he is on the phone right now laughing.. it's good to hear..
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Originally posted by: Cathy J. M.
You can't get your old life back, but you can have a new life that's good.
You can't get your old husband back exactly the way he was, but your husband's spirit is still inside him and will remain.
Life can still be good -- just really different.
Sometimes the diagnosis is uncertain for a long time; even a "certain" one is usually just the best guess that can be made. (For example, for a couple of years I thought my partner very likely had Lewy Body Disease, but it could just as well have been Alzheimer's. Luckily, the treatments are very similar.
Given the uncertainty, and the probability that there's at least some Alzheimer's involved (by statistics as well as the symptoms you describe) -- I'd start learning about Alzheimer's and especially, about how to interact with a loved one who has it. A lot of the same techniques apply to other dementias, so your time won't be wasted.
Some starting points:
-- Make sure legal and financial things are in order. Don't put this off. Change your own POAs to someone who's fully competent, and make sure you have your husband's POA for Finances and POA for medical care. Consult an experienced, expert eldercare lawyer about how to conserve your family's resources. No matter what the diagnosis, the care is apt to be expensive.
-- Get regular counseling for yourself, private and separate from your husband. You need a place to work through your natural feelings of anger, shock, horror, grief, etc. It's extremely important to do this, for both your sakes.
-- Study as if you were working on a master's degree in caregiving. There's so much to learn, and you need a lot of it yesterday! Some good starting points (and others will chip in with more): "I'm Still Here," by John Zeisel, and "The Alzheimer's Action Plan" and "Learning to Speak Alzheimer's." It won't hurt to take a look at something on Naomi Feil's approach, either -- helpful when your husband gets into a blaming mode. (It's a natural defense for someone with dementia who feels his abilities slipping away.)
We're here for you -- keep us posted.
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Originally posted by: Cheryle Gardiner
Oh. My. God.
I think I would call the internist before the 13th, tell him/her what's going on and ask for a new referral NOW. How messed up is this guy, anyway? Is he old or just has his head up his a$$.
When my husband went for his follow-up after his strokes, I had called, emailed, written, and told the doc that Jim shouldn't be driving but that I didn't want him to know I'd said so, could the doc please tell him he shouldn't drive. So we get there, the doc examines his strength - nothing on his memory - turns to me and says, so you wanted me to talk to your husband about some things but you didn't want them mentioned in front of him. Would you like to step outside so we can discuss them privately?
No. Thanks. Stupid.
Sorry. I just don't know where these guys get their M.D.s. Mail-order, maybe.
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Originally posted by: SHardy
The EEG he said would measure electrical pulses in his brain,, they said he would have to stay awake till midnight then be up at four am and somehow that would “stress” his brain and show if something was going on electrically that was making him lose his memories… that’s at least what I got out of what he said. he also said he was at high risk for vascular problems but didn't elaborate as to why he felt that.He’s probably in his late 50’s, my niece has seen him for about 30 years and when Mom (passed in 2009 VaD) had to change neuros its who we had her see. Oddly enough in January he cut his hours to 2 days a week because he took a job teaching at the local university. Yes there are other neurologists here, matter of fact his wife is a neurologist also.. this just surprised me. Sure wish I had a medical degree,
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Originally posted by: Cathy J. M.
Do follow up with the sleep study; maybe there's a connection between a sleep disturbance and the glassy-eyed events. Don't know anything about what an EEG would show; did the neurologist explain what it was for?
I understand why you were dismayed; the visit wasn't all bad, though, since the dr. did kind of buoy up your husband's esteem and help him focus on current strengths. You don't really want a doctor who makes your husband WORRY about the memory and cognitive issues. Hope the next doctor encourages your husband AND takes your concerns into account!
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Originally posted by: lurk
Just a thought; I had white spots also and was diagnosed with vascular dementia caused by mini-strokes. The white spots were indications of the mini-strokes (if I'm remembering correctly). Seems to me it shouldn't be so hard to figure it out.
BTW, I totally appreciated your detailed post, but if you could hit the "enter" key every once in awhile between thoughts, it would be easier to read.
But don't stop with the details--it's the only way to figure it out, plus it makes for interesting reading. Are we allowed to find it interesting? Lots of it sounds like my stage five husband, but the glassy eyes seems to me to be another indication of strokes. I also don't have a medical degree, darn.
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Originally posted by: jfkoc
Sorry it went so badly. How were the labs?
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Originally posted by: JAB
The reasons for dementia symptoms can sometimes be very difficult to determine. All too many patients end up with a "dementia NOS (not otherwise specified)" diagnosis. An EEG is actually a pretty standard test as part of the diagnostic process. And a sleep study is a good thing, as Cathy says.
So I was doing pretty well with your posts, until you got to the part about "does anybody besides you notice this"...
Holy cow.
Are you out in the wilds of South Dakota? Because it may be difficult to find a neuro who is qualified to diagnose early-onset dementia in that neck of the woods.
If that's where you live, I'd suggest you give serious consideration to asking for a referral (or self-referring) to one of the centers that has expertise in diagnosing and managing early onset dementias:
http://www.alzcompend.info/?p=264
such as the Mayo Clinic in Rochester, MN. I think it might be worth the trip. Maybe you have friends or relatives near one of these centers you'd like to visit.
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