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...
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.
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.
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 ...
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.
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