Several days ago I asked hubby to hang a mirror for me. He worked in maintenance in the past and is (was?) very good with all kinds of house maintenance tasks (plumbing, carpentry, electrical wiring, etc.). I usually hang around when he is doing these kind of things so I can learn and also to be able to hand him tools, etc. So, I've watched him multiple times and he's always confident and quick. This time, I could tell he was thinking hard about something. In my mind, I'm thinking he needs a tool and doesn't know where he put it, etc. I kept asking, do you need this? (no) do you need that? (no). Finally, I realized I wasn't helping and kind of backed off. But I was still around observing. He struggled through the task and did get it done. I didn't say anything that day.

Today, I asked him "When you were hanging the mirror, were you having trouble thinking of what to do next?" He said: Yes. I kept forgetting where I was at in the process. I couldn't think of what step was next - or what tool I needed. He went on to say: I didn't know if you noticed or not because I kind of "bluffed my way through". He also said he realized that he was having trouble at the time, but he had forgotten about it until I brought it up.

I was sorry I asked - because I really wanted to believe it was my imagination. Knowing it wasn't - and that he was struggling with something that used to be so simple and second nature for him - breaks my heart. I've observed the increasing trouble finding words - and the memory troubles - but prior to this, the episodes that related to accomplishing a simple task were mostly ones that I didn't observe (he told me about). And to know that he realized the problem at the time, but then proceeded to forget about it (good for him, but very scary for me). It makes me very scared that the neurologist might have been off on his time line when he said "In 4 years, when you tell me he's a lot worse, we'll repeat the neuropsych tests"...

(For the newer members, hubby had all the tests to rule out other causes - but did well enough on the neuropsych tests that they didn't diagnose him at that point. He does have the genetic markers for AD. Hubby and I know something is definitely wrong and are concerned that a diagnosis of AD is in the future.)

After our conv. today, I told hubby, "I'm scared about what is happening to you." He said kind of harshly "Just accept it. You can't change it, can you?" I agreed that I couldn't and shut up since I realized that it is not reasonable for me to expect empathy from him on how this impacts me... I guess he is reaching the point where he is able to forget what is happening. I think it's time for me to get back into counseling so I can process all of this without going crazy...

Bless your heart!!!!!!!

How heartbreaking is right - I think you should call the doctor's office, tell them what is happening, and ask if you need an appointment sooner than in 4 years.

Before there is a definite diagnosis, do consider long term care insurance and get all the legal ducks in a row so everything is in your name and you have DH's DPOA.

That cure cannot come soon enough! You and your family are in my prayers.

(((((((((((( hugs ))))))))))))) Barbara

We do have a one year follow-up appt. that will be in January 2007. The doc just used the "4 year" example for when we might repeat the neuropsych tests. I'm sure that he would order it sooner if I felt there was significant change that would be reflected in the testing. At this point, I see differences that scare me, but I don't think there are enough changes to be in the "dementia" category. I re-read the stages - and I would say he is Stage 3 and Level 2 or 3.

I feel so alone in the emotions associated with this. I know there are people on this board who understand - but I really wish I had a face to face friendship with a wife who has gone through this with a 50 something husband... I think I need to look for a local support group or something. I talk to my friends and family and just feel I am getting a "blank" response. It's like they can't empathize at all. I want to scream - Just try to imagine how you would feel if your 50 something husband was struggling to complete a task that used to be second nature. But even when I say that calmly, I just don't think they comprehend just how distressing it is.

I made the mistake today of bringing up to my husband the possibility of downsizing now before he gets any worse. The conversation didn't resemble what he got out of it... He told someone that I was going to sell all his cars and make him live in a little box (little house). I feel the need to be able to talk this out with him - but it's really too late. He is moving from "appropriate concern over symptomology" to the beginnings of "denial" and it's really unrealistic for me to expect him to be able to approach this logically anyway. I'm probably going to have to wait until he is beyond knowing what I'm doing - to make the changes that will be necessary to get our expenses down to a level that I can afford to take care of him.

I will double check the wording on our POA paperwork we did several years ago. Should I revoke mine?? We set it up for each of us.

I'll also look into the LTC insurance. Because of his heart problems, I think the cost will be outrageous, but I probably should consider it anyway.

Today, I've been wondering - how much has he been "bluffing his way through" that I didn't notice he was struggling with? Since he didn't bring up the difficulty he had this time (like he did when he told me about having trouble writing out a check), how much has he been experiencing but not telling me about? And at what point, will he deny it or make excuses if I ask? Now that he is afraid I will sell his cars and make him live in a "little box", he will probably start not wanting to admit to what is happening for fear of what I will do.

Thanks for letting me vent. N2E

Dear N2E,

I can't help you but I surely do sympathize. In my opinion marriage is hard enough even when both parties are in their right minds. I don't know how you are able to cope with this. Just remember that it is not for ever. Sooner or later you will wind up having him cared for by someone else - either at home or in a nursing home, and the nightmare will end. Meanwhile try to take it one day at a time. I hope there is someone in your life that you can really confide in, a close friend, sister or brother? Or an adult child? You really need a real flesh and blood person where you feel safe to go and vent. We try on this Board but it is not the same as 'in person.' I agree that it is now too late for your husband to be that confidante. It is too painful for him, and he cannot in any way feel any of your pain, he is too consumed with his own.

I am remembering you in my prayers, and hope it all turns out as well as possible for you ...

Love,

Martha

Thanks Barbara and Martha,
We have no kids - only dogs and cats. He has no family except some cousins (most are much older and not close to him). I do have a local sister and a healthy father in his 70s - and several good friends from my church. I just don't feel like they understand yet. When he gets bad enough to be more obviously impaired, I'm sure they'll understand more. His behavior is not a "nightmare" yet, but the idea of what may come is certainly scary.

There are issues like all the guns he has - and at what point do I take a stand on those being locked up (not yet). I remember reading some of the posts when someone was going through this with a parent. I am guessing I will get responses that now is the time - but his confusion episodes are not constant and I haven't felt any danger yet. The confusion has been about how to do something - not any lack of understanding of something like the danger of a gun. Actually, I feel there would be a danger issue if I take a stand too early on these things. He has been diagnosed with "intermittent explosive disorder" and I don't want to imagine his response to me insisting on him losing access to things like his cars and guns. I'm hoping he will make a jump from getting dangerous - straight to pleasant and agreeable with anything I want HAHAHAHA. I know it's not going to happen - but I can kid myself for a little while, can't I????

I do think I might make an appt. for ME to see the neurologist without hubby and let him know I am seeing changes - and ask if they ever put someone on Aricept when the cognitive deficits are not yet evident with clinical testing.

As I said before, I do have supportive people in my life - but they just don't seem to understand because they haven't been through it. You all have - and are a big help.

Ironically, when hubby was doing hospice volunteering for me (I was the Volunteer Coordinator), he was going to do caregiver relief for a woman whose husband was in his early 50s and was bedfast with early onset AD. I took him to an initial meeting with the wife. The CG relief ended up being canceled by the wife because of a decline in the husband's condition and she didn't want to leave him. The patient died within a few months. I wish I could remember their names (only met them the one time) because I would love to ask the wife if she would be willing to talk with me about early onset AD. I stopped by the hospice office today to see if I could find out the name, but they were in meetings. Now that I'm not on staff, they probably can't tell me anyway because of confidentiality.

My best friend from church tells me not to worry about what is not here yet. I know that is reasonable advice, but it's not really empathetic about the FEAR that is normal for someone facing this. I just wish she would start with acknowledging the horribleness of this before going on to advising me to quit worrying, haha.

Thank you all for being here.

Hi N2E,

As much as your church friend had good intentions of the 'worry later' side of things, in TYPICAL events, that's fine .. yes, some of us do jump the gun and worry about things that may not even happen!! (I'm guilty of that a lot!) .. but with AD you have to be prepared, and the sooner you are prepared the better! It's not just a typical 'problem' you have sometimes life at stake, their safety, their well-being AND on top of that, you have to juggle an ever increasingly SLOW medical system .. waiting lists to see doctors, waiting lists to get into care, waiting ... waiting ... waiting ... well, that waiting time can be spent doing valuable research and .. wait for it .. being prepared !! (Can you tell I was in the Girl Scouts? LOL)

You also have the advantage of being here with us on the board and seeing the HUGE range of wants and needs needed to be arranged prior to anything else ...

I had a phone call the other night, one poor hysterical lady on the other end. She's been looking after her 79yo Dad for 5 years along with her 4 kids .. and she's at her wits end. She wants to place him, but doesn't want to place him, I spent 30 minutes on the phone letting her know the first steps she had to take even BEFORE placing him (eg: Assessments) and I found out there is a 24 week WAIT for a first assessment!

That's like HALF A YEAR PEOPLE !!!!!!!!!!!!! I was ASHAMED of the long waiting period ..... and she panicked again .. guilt .. OMG .. I should have done this a year ago ...

Well, yeah .. but nobody warned you about waiting lists .. we hear all this good stuff from Government departments on funding for the aged, and extra care places etc .. but what they don't tell you is you have to PLAN well in advance ....

So .. what I'm saying is you are prepared some, and you have a pretty good idea of what's to come and you know from our stories what is needed to be done .. you know what steps need to be taken .. AND I'm pretty sure your strong enough to follow through. Listen to your gut .. listen to your heart .. you will make the right decision.

Hugs
:angel:

N2E

Can't you somehow disable the guns without actually taking them away? Take out and 'disappear' all his ammunition? Does he ever go hunting or is it there for protection? If he never uses them, he may not notice if they are empty. In my opinion guns in the house are dangerous ANY time, but most especially if there is a person around who has any ever so slight problem controlling his anger -- please don't put this off. We want you to survive!

Love,

Martha

Angelbear,
Thanks for understanding and validating that there ARE things to think about now even though he's not too bad yet. I may even talk to an attorney to see what things might be beneficial for me to do now as a spouse of someone who may eventually need nursing home care. I don't care a lot about money - but I did earn my share and I'd like to be able to afford my own retirement someday.

Martha,
I truly don't know what to do about the guns. He does target shooting with a shooting club - and yes, he would notice. He also keeps one in the bedroom for (in his words) "social work". What do you think THAT means? After posting, I did mention to him that I am concerned about how I will handle the guns and driving issues with him as he gets worse. He said I would have to lock him in a room without a phone.?? Not sure what he meant exactly - except that he wouldn't give things up easily. I guess my tentative plan (when I feel the danger is there) will be to get all of the guns into the gun safe and change the combination and hide the key. The safe will help the situation when the time comes. I appreciate your concern - and you're probably right that I should not wait. But, I probably am going to wait for the time being. If the confusion gets worse, I'll do something.

Thanks for caring.

N2E -

More (((((((((((hugs)))))))))))) for you.

I hope there is someone who can have your DPOA since your DH can no longer have that responsibility, perhaps your sister, a neice or nephew, or your best friend from church. The lawyer can advise you.

Since your DH is having increasing problems in understanding what you're saying (his responses have been odd), increasing problems in completing tasks, and a history of anger, it seems to me he should no longer be allowed to shoot with the gun club either. I know that it would probably be uncomfortable, but for safety the club needs to know of this situation. As DH can forget the rules of the road and how to hang a picture, so he may lose his understanding of gun safety. It might not be possible to wait until your DH agrees. Ask the lawyer about that, too.

In Mom's situation, I took all of the metal pans that could fit into her little microwave so she could never cause a fire by putting a metal pan in - and a few weeks later I took the microwave. 2 months after that, I moved her to an ALF for her safety. You just do what you must to keep them safe, keep the world safe from them, and keep the house from burning down.

I do encourage you to find a local Alzheimer's support group or return to the hospice office and ask a friend there. Someone will know of someone who will be as glad to listen and help you cope as we are here. It helps make use of what we learned on this unwelcome path. You are so right, no one else can imagine it.

I'm no expert in dealing with a man with AD as my mother had it and that's where I get all of my experience. From what I've read here, men are very difficult in a whole different way.

Wishing you well - Barbara

n2e, I haven't been participating here because you are kind of writing my autobiography and I needed to come out of the closet before joining in.

My DH has guns too, really because I think they remind him of his hunting days. He sometimes threatens to kill himself with them.

I feel awful because I was the character witness that got him his license - I totally loathe guns and killing things - I didn't want to do it but at the time he was the gentlest, most rational person, and I truly couldn't conceive of him hurting anyone.

Now, not only is he threatening to hurt himself (I think that's mainly manipulative) but he also goes into long tirades about popping off some of the neighbours' pets - I just don't know where it will end.

As far as I know I would have to have him proved incompetent before getting his license revoked, I don't think I can do that yet (ie he wouldn't qualify) and if I did, he would go totally ballistic at the idea.

I am not a gun expert, but isn't it the case that he doesn't need live ammunition for sharpshooting? If you can make sure that nothing he has is actual live ammunition, might that do the trick?

hugs, Georgie

thanks all. Georgie, I wish we could sit and talk. Sounds like we have a lot in common.

I edited out the rest of this post... got paranoid about sharing too much info. and the wrong person seeing it.

I know n2e, wouldn't it be great sit down and have a coffee together.

I actually asked DH's exwife about his behaviour (it was one of the strangest conversations I've ever had - but shows you how worried I have been lol). Apparently he used be like this when he was with her, so I can only guess that he has been keeping himself in check and is now losing his inhibitions. Some of the things she told me would curl your hair!!

A concealed weapon? yikes!!!!! In DH's latest incident he followed another driver all the way to where he was going, then got out of the car and charged towards him. He screamed the most terrible abuse at the poor man - standing in the middle of the street and stopping traffic. It was so bad I don't have much trouble imagining him bringing a gun out if he had one on him.

Take care
Georgie

n2e, I have taken a bit out of this reply too, in case it was the thing you were worried about

Hi Yall,

I am just sort of catching up on the tail end of this thread.... But, guns are so dangerous!!! You need to get rid of them.

My dad has alzheimers and parkinsons and has only 3 guns. 1 is an antique and would need to be put back together to be used and probably my dad would not know how. The 2 other guns are hidden, by him, and I bought and put trigger locks on them and have the keys at my house. I think that I did this about 1 year ago. So, far he has not noticed. Nor my mother.

I left them where they are hidden. I guess that I should find out if he has any kind of hunting or really long and sharp knives also.

I believe that once an alzheimers patient gets angry or looses his mind (so to speak), it is too late to do something with the guns. My dad was talking about getting out one of his guns to shoot the squirrels (they were eating the pecans). I could just see him try to shoot the squirrels and hit someones window or them in their back yard!!! Too scary.

You need to either take out all the guns at once, when he is gone, or a bit at a time. Like the ones that are least likely to be noticed missing. Taking away the bullets is not that safe, because they may have more elseswhere and some hidden that you do not know about.

Leave a note where the guns where and tell why you took them and that they are fine and you have not sold them or given them away. Be sure and have someone with you when he finds out! My dad would not get mad, just sad and helpless.

Now my husband is another matter. He has a gun case, with a glass front. He also has a few others that are hidden and knows more about them and where they are than I do. I have a couple of guns myself.

If my husband or I ever got alzheimers, we would just have to have them moved to a place that neither of us knew about. That would have to be the only way.

Please do something about the guns, ladies, now, before it is too late!!!

Love, Wannnabe