We just learned two weeks ago my 58 yr old hubby was diagnosed with AD and as you know it HURTS tremendously. He had difficulty at work so that's why he was tested. He is a bit forgetful, both otherwise he's the same fun, caring guy he's always been. Neuro ran EEG, CT, and PET/CT. EEG & CT were negative. She diagnosed DH from radiologist's PET scan report as "advanced" and did no other testing. We are going to another neuro next week to understand where my DH is because if he was advanced, it doesn't appear he would still be doing everything for himself (no longer working though).
I see there are many seminars and AD support groups out there with lots of info. Unfortunately I have to still work at least 7 more years until retirement, and we don't have the luxury of picking up during the day to go and learn when most of these are held. Have any of your spouses attended any AD seminars/support groups in the early stages? Were they helpful to them? Any suggestions? Wish I could just quit work and stay home with him. I feel the exhaustion already beginning.
Welcome to my website. Please go to the "previous blog" section on the left side of the website, and click on #126- Help for the Newly Diagnosed. Or copy and paste this link:
http://www.thealzheimerspouse.com/newlydiagnosed.htm There is lots of good information in there.
If your husband is still working, he's not in the advanced stage - copy and paste this link for information on stages- http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp However, he needs a complete neuropsychological evaluation - it's hours of cognitive testing with a neurpsychologist - it will give a clear picture of where he stands on memory, problem solving, daily functioning, focus and attention, ability to learn and retain new information, and overall cognitive ability.
Yes, we both found the Early Stage Support Group very helpful in the beginning.
We are always here for support and information.
joang He sounds like my husband was in the beginning - it was problems at work that alerted us.
Ipo, if you still have 7 years until you can retire, if the disease progresses like most do, you husband will need constant care long before then. I know it is hard for you to believe right now, my husband also had to quit work due to the disease but yet was still seemingly to me, the same guy he was before, I did not even realize things were not right. The disease is gradual and each phase becomes worse, because it is gradual it will cause you to be in a false state of security, you will think one day he is fine, does not have the disease at all, then in the next day you will know he does.
Just prepare that you either will not be able to continue to work or will at the least have to have in home help before 7 more years.
I hope I have not caused you to worry but yet I wish I had realized this in the beginning. Prepare now. Get the paper work in order as far as durable power of attorney. health care etc. The time will come and it also will happen gradual where your husband will not be able to sign these documents.
Thank you for the straight up info. Deep down inside I figured that as well. The next step is telling our high school senior as well as both sides of the family. I get the feeling that my husband does not want to do this but we can't keep it a secret. I feel I am about to explode. I've been talking with some support groups and plan to attend one this week.
Best thing you can do--face-to-face support groups and posting here. You will get a lot out of it talking to others in the same boat. Don't be surprised if some family members choose to deny it, hopefully not, but sometimes it happens. Hopefully you will get some support from them. It will be hard on your senior child, after all it's his/her father and very hard to understand, but surely he's seen what's been going on. Stay w/us.
"...if the disease progresses like most do, your husband will need constant care long before then. I know it is hard for you to believe right now..."
Yes, we've had a Dx for a year, and my husband left work 2 years ago, and I still am not quite believing that this thing will progress. I suppose there's an aspect of spousal denial which never quite goes away, but at the moment I imagine that he will remain just as he is--a reasonable companion, not as sharp as his old self, but I can leave him at home--for years to come. We'll see how long reality squares with this assumption.
Btw, Ipo, my husband is 60 and has had symptoms more or less throughout the last half of his 50's. We have 2 teens at home, and 2 college students.
Emily, you are not alone in the way you are reacting. I did the same thing, I was in denial and for about 4 years really at times thought it would not progress to the stage we are now in. It seems that my husband progressed one stage per year so to speak, as I read the stages and sub stages it is almost exact one stage per year. I know that all are not that way, some progess faster than others but one thing is certain, the disease is a progressive disease and will continue to progress.
IPO, you are doing a wise thing in going ahead and telling people now. I did not choose to do that, in fact I tried to hide it from people, guess because I was in denial myself. Things were so much better after I shared this with our family,they were more understanding and did not expect things from Jim that he was no longer able to do.
lpo, Welcome, hate to see others w/ this AD journey but know we are all in it together and will be here for you thanks to Joan. ASK, VENT, TELL us whatever you need to. There is always someone ready to answer and support you. My LO has AD dz when he was 56 four yrs ago. About stage 5 or 6. But our children are grown and married w/children. My heart goes out to you w/ younger children. When things get rough, instead of beating myself up, I try to remember what someone on this site said, "You didn't cause it and you can't cure it." (If anyone remembers the rest of it, tell me) Just need to do the best we can and that is all we can do; one day at a time. Pat
I would discuss with your DH who to tell, and when. My DH was adamantly opposed to telling everyone outside the medical field, for quite some time. He was very good about joining a couple of studies at a local ADRC, etc, but just wanted to keep things to himself until HE had had a chance to adjust. Little by little, he stopped feeling embarrassed and ashamed, and when the time was right, he had no trouble with other people knowing.
I would think your high school senior needs to know, definitely, right away, to understand your DH's behavior and be prepared for the possibility things will get worse. But if the members of your immediate family don't live nearby and aren't in a position to help you care for him, or aren't people in whom you normally confide and use as sounding boards, maybe you can let telling them go until you and your DH are ready.
It's such a deeply personal thing. And it's hard to know, sometimes, how other members of the family will react.
Sunshyne, Your description of your DH at the beginning sound very familiar. My family does live close so I don't believe I can keep it from them long. I would like to wait until he is ready, but am not sure when that will be. We are planning to tell our teenager real soon. (I still have to tell my employer.) I guess one of the most difficult things I'm facing right now is leaving for work each morning. I have an indescribable crushing pain in my chest as I want to stay home w/him. I will continue to observe and time will tell when I need to make adjustments to our schedules.
Well, if your family lives nearby, maybe they can help you out, which would be great.
But in my experience, other people often won't notice what's going on, even if they spend a lot of time with your DH, so you probably won't have to worry about "keeping it from them" for long. Mine used to work with me, and I continued to bring him in to work so I could take care of him. And I'm 99% sure that none of the rest of the staff picked up on his problems. Lots of times, even when you flat out tell other people (even try to pound it into their heads), they won't believe you.
Yeah, boy do I know what you're saying about wanting to be with him, and what that pain feels like. That happened when my first husband had cancer. I had more and more trouble leaving him to go to work, and when he finally went into the hospital, I just moved in with him -- sleeping on a couch or on the floor, wherever I could squeeze in, so I could take care of him. I never even said anything to my employer, it didn't matter to me how they reacted. (Fortunately, I had a friend who worked there, and she told them what was going on, and they never made a peep. I went back after he died, took up where I left off, and that was that.)
Right now, having to leave my (second) DH isn't something I have to worry about, but it's about to become one. I own a company now, where he had also worked at until he became too sick. My company is about to go under (too many distractions, too much worry). I'll have to find another job, hopefully something with flexible hours. And I'm in a real flap about that.
Do you need to tell your employer? Are you thinking about getting compassionate leave or something like that? You might want to start another discussion thread on that subject. Some of the people who post at the Alzheimer's Assoc discussion forum have had unpleasant experiences if things are not handled right. Others might know more about the laws, and how to protect your job if you need to. Or check out discussions on that topic at the Alzheimer's Assoc site.
I'm so sorry to hear what you've already been through and now you are a caregiver once again. That has gotten to have taken a toll on you. I have always believed God doesn't give us more than we can handle but I'm having a real hard time with what I'm facing right now. The emotial and future financial burden is devastating.
I have not yet told my employer but feel I probably should soon. It's hard to act normal when I am so torn up inside. Good idea on the new discussion topic. I may just do that.
It is: You didn't CAUSE it..... You can't CONTROL it..... Your can't CURE it. Don't you hate it when you know something, but can't immediately recall it....can you imagine how our AD husbands must feel!!!
Ipo, so sorry about what you and your husband are going through. I first noticed my DH's memory problems when he was about 58. He lost his job at 59 when his bank merged and his department was moved out of state. He went to work for a friend until he qualified for Social Security at 62. He was diagnosed at 63. I worked until he was 67 and we didn't run into any problems with his staying home alone. He did not drive once he was diagnosed at 63. He is now 72 and is can't be left alone more than an hour at a time. But it's been almost 10 years since diagnosis and almost 15 years since I first noticed the problems.
What I'm saying is that we can't predict the speed of the disease. Everyone is different. It may be that you will be able to work seven more years and he can stay at home alone. But always have several alternative plans so you can be somewhat prepared when he enters each stage. We never encountered any financial difficulties due to his Alzheimer's. Be prepared but don't borrow trouble. And, yes, it would be good if you could have a support group or support person who knows what you are going through. I actually never joined a support group because I didn't want to know what bad things were going to happen down the road. I preferred to take it day by day.
BeBe, Yes, the disease does go differently for each person, however being prepared is not borrowing trouble. The trouble is already here. Most people with this disease will encounter financial hardship, especially in the end stages, and this disease does give a false sense of security.
Each person is different, but if I had taken things day by day I would not be as prepared to handle things as I am today. So I still say to IPO get things in order and plan that the disease will progress, some faster than others but be very aware of this. Don't stick your head in the sand so to speak.
I think that once you know your spouse or loved one has AD, you need all the information you can arm yourself with, that way when they say or do things you will be prepared. This is the biggest battle they will fight and with you prepared it will help them deal with all the changes. My dear husband was DX 18 months ago and he progressed very quickly, he is now in a wheelchair, not eating and very little speach. 1 yr ago I thought foolishly that i would still have 10 or so years with him home. and now here he is living in a nursing home. 2 yrs ago he was driving an 18 wheeler down the hiway with little to no symptoms.........you just never know. kathy
Jane, you need to re-read my message above. You will notice that nowhere did I say not to be prepared. Actually I said, "But always have several alternative plans so you can be somewhat prepared when he enters each stage...Be prepared but don't borrow trouble." But you still should take it day by day. If I had read some of the posts describing how some people decline so quickly I would have assumed I may have to quit work, sell my house, and go on welfare. I would have been worried out of my mind. We had a financial crisis before Alzheimer's so we lost all savings, our stocks aren't even being traded anymore. We did sell our house and move to a condo. And yet it has worked out. Mainly because my husband's Alzheimer's has been slow to develop. But everyone's case is different. So my advice would be to be prepared for the worst case scenario but don't assume it will happen. You will go crazy with that thinking. You CAN take it day by day if you are prepared.
This is an Alzheimer's site and some of you who describe how quickly your spouse is declining seem to be describing Lewey Body Dementia.
I can certainly sympathize with your statement that you didn't join a support group because you didn't want to know what bad things could happen down the road. That's how I felt when my first husband had cancer. There are so many awful things that can happen, with either disease, and nobody knows which ones will. And why agonize over something that doesn't end up happening ...
So now with my second DH having AD, like you, I read a lot and try to learn a lot, but don't make any assumptions. I keep telling myself to hope for the best but plan for the worst. And that planning has more to do with looking at finances and legal issues (my financial crisis is happening now, in the middle of the AD ... I can sure sympathize with you about yours!) and trying to make sure I have as many of those bases covered as possible, while not making any assumptions about how fast the AD will go, or which symptoms will develop.
I do a LOT of hoping on that one!!!
BTW, my mother was diagnosed with AD. Hers developed pretty slowly, but got really awful by the end. My father -- who was a doctor -- was convinced she had Lewy Body. He didn't see any reason to have an autopsy done, so we'll never know.
Hi, Sunshyne, you said perfectly what I was trying to say. And you face this the same as I am trying to do.
Too bad about your not being able to have an autopsy on your mother. My mother's whole body just shut down one day. She had requested no autopsy on either her or my father so I'll never know what genetic tendencies have been passed down to me and my children and grandchildren. You better believe I've already lined up a topnotch pathologist for me and my husband so the children will know and not have to be in the dark or always wonder.