My DH is 44. We have been married for a little over 14 years and have 2 children - DS is almost 11 and DD is 8. Over the last year there have been many changes in my husband. He has lived with depression for all of his adult life. He is typically a very conservative, quiet person. Last summer and into the fall, his personality began to change slightly. He became a little more loose with money and became much more social. Then in January, he became depressed again. He was very behind at work (he had a high stress fairly demanding job). He became more and more disorganized and unproductive. He kept making excuses for his faillings "I'm doing the work of 2 people. My boss doesn't support me. We don't have a secretary. etccc"
So, given those changes, bipolar disorder seemed to fit. He became more and more paranoid over the next few months. He had to be hospitalized, because he became somewhat aggressive. He was hospitalized for a week. When he came home, he was very nervous and would withdraw into the bedroom for long periods of time. We found out shortly after that he had a blood clot restricting food digestion. He could not hold down solid foods. He had surgery and this situation was corrected. Now, he eats what he wants and has gained the weight back that he lost.
That's the history of where we've been so far over the last year. Now, he can not remember anything. He struggles to do even the simplest tasks. For example, I asked him to put some towels up that I washed this weekend. He carried the towels upstairs and put a couple up, but then forgot what he was doing.
He stays very nervous and anxious and asks me the same questions over and over every day. I have to remind/instruct him to take a shower/shave. He does not want to be out in public at all. He becomes even more clingy to me than normal. He is afraid that he will get lost.
At his last psych appointment, we got the results of some genetic testing that his doctor had ordered. He has a mutated gene(?) APOE-E4? This means that he has an increased risk of having ad.
They also took him out of the room and did a test for dementia. I don't know what the test was called or how they conducted it. He scored a 22. I don't really know what this means except that he has dementia.
He is having a PET scan done this morning to (I guess) rule out any other potential cause for the dementia.
He has had cat scans (which did not show a problem) and a brain MRI. The MRI showed shrinkage of the brain - but I have been told that this is normal for a person in his 40s.
He hasn't worked since April. Does this sound like AD to you guys? As far as medications, he is on clozaril and paxil for the bipolar. I'm not aware of either of these causing the symptoms he is having now.:confused:
Lelore
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Martha H
08-14-2006, 02:28 PM
Not in my unprofessional opinion. It seems that it came on way too fast. Dementia usually has such a gradual start that you can't even tell when it began .. until you think back at small signs that 'something' could be wrong.
This seems a very very rapid onset ... I suspect that in his depressive episodes he may have taken or still be taking some prescription drugs that are causing memory problems as a side effect.
This is very hard to prove - going off a drug doesn't remove all of it from your system for many weeks or months. Yet you might want to ask his doctor to try a different medication for his 'episodes'.
I sympathize with you and hope that the tests will bring clarity. In my experience, dementia was diagnosed after all other possible causes were ruled out and they still didn't know what was happening. Thyroid disorders, tumors, other sytemic diseases, even a vitamin or mineral deficiency, blood clots or bleeding in the brain. When nothing physical can be measured or proved, they go by the person's behavior, answers on tests , etc.
Good luck - I do hope it's something else, something curable!!
love,
Martha
georgie04
08-14-2006, 03:07 PM
Hi LeLore, and welcome.
I agree with Martha in that there would be a lot of other things to eliminate first, and, given his recent history, it seems some or all of what has been going on could be contributing. I am sure they are checking for things like B12 deficiency?
The test you mention is probably the one called Mini Mental State Examination - if you google MMSE you can find out more about it and what the score means.
This must be a very worrying time for you - I hope that further tests will lead you to a 'fixable' cause of these symptoms.
Georgie
angel_bear
08-14-2006, 07:54 PM
If it is early onset Dementia (and it's not unheard of in the 40's) it can be a particularly rapid descent ... from diagnosis to final stages can take between 5 - 10 years.
Brain shrinkage in your 40's is NOT typical .. 60's .. yes, 40's no .. not so that its noticeable on scans anyway.
How is his speech? How is he dressing? How are his toilet habits?
Speech tends to go haywire unfortunately, which makes the whole job of 'caring' just that little bit more difficult, because what's going on inside THEIR head is perfectly NORMAL to them, but to us .. it's erratic behaviours.
Is he layer dressing? Has he stopped wearing singlets? Changed underwear (or not wearing any at all? Free balling my ex-husband used to call it LOL) sometimes the way we dress get's all too much ..
Are you noticing any 'skid' marks (out of character bowel movement remnants on underwear)? Urine staining? Hoarded dirty clothes stashed away in wrong places?
Is he taking anti-depressants and if so is he taking them properly? Could he be overdosing at all ?? That could make for episodes too.
And as the other girls have mentioned, Vitamin B12 deficiency mimic's dementia, thyroid disease does too.. Lord knows what boy hormones can do (we know what girl hormones do to us LOL) .. there are many other precipitating factors that need to be taken into account before Early Onset is finally diagnosed ....
But don't go down the 'river of denial' if it is the case, get Power of ATtorney done NOW .. get a living will done NOW .. get's his wishes for end of life done NOW ... cross all the T's, dot all the i's, while you still have time, and LOVE HIM TO PIECES while you still have time .......
It is a much harder and rockier road with early onset .. my heart goes out to you.
Hugs
Sally
Lelore
08-14-2006, 10:29 PM
Thank you for your responses. He did have a blood work up done at the end of June. His thyroid was normal as was other hormones. The only thing out of the ordinary on that panel was his blood glucose level. It was pretty low.
He went through a period of a couple of weeks where he could not get dressed without instruction. He would sit on the end of the bed and say "what do I do". Now, I just ask him to get dressed and he does. Although, some of his clothing choices are a little different. He frequently wears his bathing suit instead of shorts and if he is going anywhere outside the house, he gets dressed as if going to work - which is more formal than he needs to be.
He goes to the bathroom all of the time. He is constantly drinking water or chewing on ice (a new habit) which makes him have to pee a lot. One night last week, he got up about an hour after going to bed and had fallen on the floor. He said he was lost and couldn't find the bathroom. I helped him up and to the bathroom, but he had wet himself a little that night. He passes gas in front of anyone and everyone now. He has no modesty about that and he used to be very modest.
He has always hid dirty clothes. He leaves a lot on the floor (he's always been a bit of a slob), but there was always more hidden. I would think I was almost done with laundry and he would bring out this big pile from nowhere.
I know I need to act on the power of attorney thing. I just can't bring myself to do it. For the most part, everything is in my name and his. Prior to his surgery, he had a will completed - so I do have that.
There is so much to think about and figure out. It gets extremely overwhelming. His parents and I have been wandering if we have missed symptoms over the years because of the other mental health issues. So many mental illnesses have such similar symptoms.
Thank you for your input. It helps a lot. I never thought I would be dealing with this at mine and his ages - if it is AD. Of course, I never thought I would be dealing with any type of illness such as this. I don't think you ever expect it and are prepared for it.
Lelore
oh yeah, as far as his meds go.... he gets only what I give him. All his medications are locked up and only I have the key to the safe. I had to do this a month or so ago to ensure that he wasn't getting mixed up and taking another dose because he forgot he had already taken it, etc...
He is only on Clozaril (an anit-psychotic) and a low dose of paxil right now. Clozaril can have a serious side effect of lowering white blood cell counts so he has to have a cbc panel done once every 2 weeks to stay on the drug. I have not read anywhere about side effects related to confusion. I'm not sure about paxil.
georgie04
08-14-2006, 10:54 PM
Lelore, have you mentioned the water drinking to his doctors? My SIL had that symtom recently - constantly drinking and going to the bathroom. When I described it to her doctor his first comment was that it was a classic diabetes symptom. I have read there is a link between uncontrolled diabetes and cognitive function.
Georgie
angel_bear
08-15-2006, 08:56 AM
Yup, that was my first thought on reading the BGL levels and fluid intake .. get that checked out immediately.
I know you don't want to take the steps needed .. part of it is denial and it is a natural part of YOUR process of grieving for what is lost ..but part of it is also "oh I'll just wait, he might come out of it" .. but you don't have to empower the POA unless needed.
It's INSURANCE ..it's not giving up .. and you really don't have the time to 'wait it out' .. we've ALL procrastinated over decisions and we've all learnt the hard way .. believe me .. us carers can be stubborn people LOL .. you do NOT have the luxury of time and if it is dementia, he will NOT snap out of it. He needs to be protected at all costs .. and part of that protection is a POA and part of the responsibility of keeping him safe is YOU being able to act on his behalf.
:p **bully tactics in force** :p
Sorry to be pushy, but you REALLY REALLY REALLY need to get some back up before it's too late and the Government Agencies step in and take over (and they can, and they will if nothing is already in place).
Hugs
Lelore
08-18-2006, 03:55 PM
Hey,
Just wanted to give an update. I checked through paperwork that my DH had gotten done prior to his stomach surgery. I discovered that I have had Power of Attorney since June 2nd. Praise the Lord!! I was so relieved that I don't have to explain the why I would need POA to my husband. I don't know what made him think to do that, but I am so grateful that he did.
I also looked back at the blood tests that we had done at the end of June. At that time, his thyroid and B12 levels were normal. The only thing out of the ordinary was his blood glucose level. It was abnormally low, but I have read that this is common for someone after stomach surgery.
We will find out the results of the PET scan on Wed. What is your all's opinion of this scan? I have been told that this will allow his doctor to diagnose (or rule out) alzheimers with a relative certainty.
His symptoms are pretty much the same. We're just waiting for some good or bad news at this point.
Lelore
georgie04
08-18-2006, 04:18 PM
Hi there,
Good news on the POA.
From what I understand the pet scan will give his doctors the best info. It can apparently pick up changes even before symptons are obvious, and it lets them distinguish between different kinds of brain diseases. So if there IS something that shows up, they will be able to give him the most appropriate treatment.
I'll keep my fingers crossed for you on Wednesday.
hugs, Georgie
Martha H
08-18-2006, 05:17 PM
The PET scan is used to discover tumors, bleeding, blood clots or other malformations in the brain. Any of those can cause dementia symptoms. What it cannot show 100% is Alzheimer's Disease. For the most part, after doctors have ruled out anything else that could be causing the symptoms, they attribute them to AD. It is a matter of ruling out all other possibilities.
Most of the time, it is good news if something is discovered, because most of those things can be cured - but AD can't.
Good luck !
Love,
Martha
Lelore
08-21-2006, 01:47 PM
Thank you for the info. I looked up the Lewy Body Dementia and there does seem to be some similarities in DH's symptoms and the symptoms of this disorder.
For example, my husband went out in the garage yesterday morning while we were getting ready for church and fell. I asked him if he tripped over something and he said - no he just fell. He has been on anti-psychotic meds for most of his adult life. However, he developed a somewhat extreme sensitivity to the movement related side effects of these drugs. He had hand, tongue, and jaw tremors that were becoming more and more pronounced. Also, he became fairly delusional back in Feb - March. This continued through June.
All of these things are symptoms of LBD. This is pretty interesting. Neither of these diseases - LBD or AD - are diseases that I want my husband to have. I am still hopeful that we will find out Wed. that there is something fixable or curable that is causing these symptoms.
From what I have read, the PET scan should distinguish between LBD or AD if either one is the culprit. I probably won't sleep at all Tuesday night.....