All of the tests that were looking for OTHER causes of hubby's memory/cognitive problems came back "normal". So there is no "easy answer" and no "easy fix".
The neurologist then said - what we really need now is the neuropsych exam results (which isn't until Feb. 14th).
Then I asked about the genetic test results. He seemed to hesitate in giving us the info. prior to the neuropsych exam, but then he went on to tell us that it was positive for the genetic markers associated with Alzheimers. He reminded us that this doesn't mean he definitely has AD - and what we really need now is "documentation of dementia".
So basically - if the neuropsych exam shows evidence of dementia, I think they will give a "probable early onset Alzheimers" diagnosis.
I think it may be early enough that the neuropsych exam may not show the dementia (yet). But I know there has been definite evidence of problems - and that we have no explanation from all of those tests - and the genetic results point towards AD.
Not good news. I feel pretty sick to my stomach. Hubby is taking the "we don't know anything" approach to the test results - which is fine. But I think the news we got was not good. No explanation for what we both know has been happening - and the genetic markers associated with familiar early onset...
On a lighter note: Hubby is threatening to wear an aluminum foil hat to the neuropsych exam and tell the doctor it "shields the messages from the aliens". Then he figures they'll ask "what aliens?" and he will answer with various other nationalities like "Mexicans, Canadians", etc. Oh my. He deals with everything by joking and that neuro psych exam should be quite interesting...
During one of his tests (ENG), the audiologist asked him to say two girls names that start with "M". He could only think of one - "Mildred"! Funny thing is that his first wife's name was Melanie! At least I know he doesn't spend much time thinking of her, haha. But Mildred??? (Can you imagine not thinking of "Mary"?)
I don't know if I posted about him forgetting about 3 different conversations - that were fairly in-depth conversations and then a couple of days later he had no recollection.
But friends and family don't realize it yet - and don't take it seriously - and keep saying "there's nothing wrong with your memory", etc. That makes me furious because they are minimizing it and just not wanting to cope with our sharing what is happening and our fears. There is something wrong - and it's ridiculous for them to think they can tell by infrequent casual contact.
OK, that is my post for now. I think I need to be sick.
I read your post this morning, and it's been on my mind all day, I didn't want to answer you straight away because I needed to put some thought into what I was going to write.
First of all, I guess right now at this moment, your grieving. Grieving for what has been, what has happened and what is to come. The forecast doesn't bode well, and that's devestating, not only for you and your husband, but for your family and friends.
It's going to be tough ... it's not going to be easy ... your going to have to make some pretty damn important decisions and your not going to like doing them because some of these decisions will be seen as failure .. that's the carer guilt thing kicking in.
First and foremost, I believe in education. Educate your family and friends so that if they will, they can be a support network. Get these things in place NOW before you NEED to, because not everybody will come through for you ... they won't mean it, but it will happen. If they choose not to believe the doctors findings, perhaps you could get the doctor to talk to them. That's a big ask, but not impossible. Denial is going to be your worst enemy -- and the most UNEXPECTED people will deny the results.
Don't give yourself high expectations, give yourself small achievable goals. Don't say "I'm going to look after him to the end" because you may not be physically able to at some stage, and therefore your setting yourself up for defeat. Like I set, set realistic goals.
While your husband is still 'with you', get legal things set into concrete .. it's too late when an official diagnosis comes in, you need to get these things done before hand. Ensure your husband understands you need legal support to help you care for him, even with the jokes, (which is FANTASTIC by the way, I'm usually the one to make a joke out of the WORST possible situations,) I'm glad he still has a sense of humour, long may it last.
Finally, how is HE feeling about all these latest events? Look behind the jokes, look deep .. watch out for sneeky depression, sleeping patterns, eating patterns, behaviours .. give him a hug, and tell him you love him regardless ....
I am SO SO SO sorry for your situation, and I would do ANYTHING to eradicate this insidious disease from this planet if it were possible .. because NOBODY deserves this.
I am so sorry that you got this sad and depressing news.
Yet I am glad your husband is not unduly upset by it (or is he good at pretending?) .. I know I would be devastated if I were diagnosed with it.
YET - there are ways to cope and you WILL be able to cope. Thank God it does not get horrible overnight .. it is a very gradual decline. You cope with it only one day at a time, and there will be lots of good days. For the bad days, we are here to listen and deeply sympathize with you.
Sally is right - now a grieving process begins. You first have to get used to and accept the idea . Many go into denial for a year or more. Then work out strategies that help you. They may try Aricept or Namenda or another medication, and it may keep him on this level for up to 15 months, more if they produce better drugs. There is a lot of research going on. The Alzheimer's Association will send you written material or answer questions on the phone.
You can join a local support group and speak with real live people in the same boat. (I didn't because I could not leave Mom alone at all, ever. This cyber support group saved my sanity.)
The time may come when he needs custodial care, and when that happens, you will cope with that too - just one step at a time. Barbara H on this Board intruduced me to a middle eastern proverb "shrea, shrea!" which means something like 'one step at a time." or "don't worry about tomorrow.' I used it a lot. I also said the Bible verse to myself very often, "take no thought for the morrow." One step at a time, and we do learn to live with it. It may even bring out the best qualitites in you.
Thanks Martha. I know I will re-read yours and other messages several times over the next few days.
Hubby sent out a message to friends/family with the "normal" test results of all the screening out tests - as well as the results on the genetic test that was positive for the markers associated with AD. People don't understand (and I don't expect them to if they haven't been through this) and they are sending messages back saying how wonderful it is that the results were normal... They don't understand it is all about excluding other causes for the dementia.
But when I commented on that to him, he said "I guess I didn't understand that either..or if it was explained to me, I don't remember"...
We are going out for dinner with friends tonight and that should be nice. I am going to try to find the balance of enjoying everyday and at the same time planning for the future without agonizing about what is to come.
Thanks again to all of you for the support and understanding. Looks like I'll be sticking around for awhile...
I feel for you and know exactly how you feel, it is so overwhelming. You probably remember I have the hubby (56) vasular dementia. Anyways it took awhile for it to sink in and believe it. I tried convincing doctors that maybe it is something else. After I accepted it I felt much better and am dealing with all the responsibilites that he used to do. He no longer drives so I am the one running to the store and all errands. Make sure you get everything in order and have a backup support system. That is why I am moving back to CA., I can't do this all on my own. Just try and take one day at a time and not look too far into the future. As far as family, I went through the same thing. Nobody wanted to believe it. They would talk on the phone (for 2 mins.) and say he sounded so good. He knew who I was, or he knew Jason (son) was in Germany. This irratated me, like do you think I want him to have this disease. But a lot of it is they feel bad and don't understand the disease. Good days, bad days. As far as hubby, he seems ok with it, sometimes he will say he is disgusted that he cannot do the things he used to. We try and not make a big deal out of the mistakes he makes, ignore it or fix it ourselves. Like not washing dishes right, vacumning half the room thinking he is finished, putting things where they don't belong, losing stuff, forgetting how to operate something, etc. I don't tell him anymore about the disease than he asks about. I don't think he would benefit from knowing all the details. He knows it can progress and no cure. I had a long talk with my boy's and told them the sooner they accepted it the better off we all would be. I explained I needed their support. They have been a big help, take him for who he is now. They take him out and sometimes he talks and other times he doesn't. We call it the zone, but the kids just keep talking to him. I miss our conversations and the friend I have had for 30 years. Not sure how long I will get to keep him with me but I enjoy the time I have now and will deal with the future when it gets here. My prayers are with you.
Thanks Diane. I do remember that your husband is about my husband's age and has dementia. I really appreciate the prayers and I will pray for you and your family also.
Our dinner out didn't go so well. Well, at least the drive there and back didn't. My husband has terrible road rage and I recently (finally) said I wouldn't ride with him anymore. So now I am dealing with him being upset with my driving for not being aggressive enough. We had some words on the way home.
Then we were talking about what kinds of things we needed to look into - and he said he needed to find out if he could file for divorce if he has AD and he went on to say that sometimes he thought we would both be better off if we split. I didn't realize he felt that way and I am more devastated by that than everything else. He wasn't just saying it BECAUSE of the disease and wanting to protect me, etc. It wasn't a "you would be better off" kind of comment. He wonders if HE would be better off divorced from me... Boy that hurts. I really do need prayers.
My heart goes out to you. What a blow. I remember you have already said it wasn't the best of marriages.
When we think of taking care of an AD relative, we just assume it is someone we are close to, love, and respect ... but often that is not the case. Sometimes (for example, my brother's MIL) it is someone who hated and rejected him for many years. In the throes of dementia she tried to kick him out of his own house, and much more.
She died almost 2 years ago, but actually lived with him and his wife for 13 years.
I don't know what the answer will be in your case, but remember, you can deal with it ... thinking realistically (I am separated after a very long, not very good marriage) I was lucky to get out of it before anything like this could come up . I can't imagine being a loving, caring caregiver for the person who made my life a misery for so long ....
If he really thinks he would be better off living apart from you, this would only give you a wonderful reprieve from years of difficulties. It doesn't have to be a bad thing. One wonders however, who he expects to stand by him when he gets worse. In such a case I would trhink an early switch to an assisted living community would be good for him, and then a nursing home.
Just don't let his comments devastate you now. Think of your future too. Was the marriage so good that you can realistically devote the next 6 to 10 years to almost full time care - would there be any appreciation shown - or would you be attacked and worse? The patient tends to hate the caregiver in the end, just because that is the person depriving him of his 'freedom' .. my dear loving and caring Mom was mad at me for taking away her freedom to come and go, get lost, burn things, stay in her dirty underwear etc...
I could care for her with love because of the long history of a wonderful mother/daughter relationship we had, but even then it got too much for me....
If it had been my husband and not my Mom, with our history of troubled and extremely difficult years and decades, I am sure I could not have done it .... professional care would have been the only choice, not one of many.
I am now praying for you in a different way, and hope a solution can be found. One that makes YOUR life easier as the disease gets worse, and also leaves him with the needed care. How sad that at a time he is more dependent on you than ever before, he lashes out. This may be the disease speaking and not him, but I feel that he is still in the early stages and knows what he is saying - maybe just lost some of his inhibitions to express it.
I feel for you because we had the very same car and driving arguments. I had so many screaming fights while in a fast moving car on a German Autobahn that it is a wonder any of us lived to tell about it. Being confined in a closed car with me (regardless of who was driving) brought out all his anger and aggressions. The ultimate 'captive audience!
As a positive note I am far happier than I ever thought possible living alone .... I have found that it is better to be a pot without a cover, than a pot with the wrong cover on.
I am so sorry and sad for you. Please know that there are many here, including myself, who are praying for you and your husband. I am living with my husband, who is 58, and he is showing signs of memory loss, personality change, etc. If you don't mind my asking, what is the genetic testing you were talking about? I haven't had my husband tested for anything yet. He is the sole support of our family and we have 2 teens. He is still able to do his job of 23 years (thank God). It's just that he is so forgetful and does make mistakes once in a while at work. I just hope and pray it's not AD but I'm not going to have him tested yet. He still drives good and we can't afford to have his license pulled, he drives at his work. Plus, I don't think the AD meds help people that much, do you? I hope your weekend gets better and your husband will be nicer to you. What he said is so hard to take, knowing what you may be facing. Keep us posted and prayers and hugs go out to you. cyt p.s.. I don't remember you saying, but does AD run in his family?? Please take care of YOU!
Oh Need, I'm so sorry I haven't been able to respond before now. I've been working some long hours.
The first thing I want to say is about his divorce comments. Could it be that he thinks it would be easier for you to hate him than for you to have live with him like he's going to be? Could that be why he said what he said?
Your husband knows from his family history what's to come and he knows it isn't pretty. Is he in his own way trying to spare you the anguish that his family members, as caregivers to his relatives with alzheimer's, have gone through? Does he need even more reassurance that you would rather see this through with him than to be without him? I'm sure you've already told him that a thousand times. But does he remember?
Often times people disguise their pain in humor-especially when trying to spare a loved one's feelings. But eventually the humor starts to fade and depression takes hold. If your husband is becoming aggressive or is changing moods suddenly, you might want to ask his doctor about a mild antidepressant. My dad was put on a mild dose of Zoloft and it has really helped him a LOT. He still gets depressed from time to time but he's not aggressive and angry like he was before.
People with dementia eventually lose their ability to say what they mean the way they mean to say it. I tend to sometimes forget that when my dad says something to me that hurts me very much, something I know he wouldn't have said before he got alzheimer's.
I would never wish this agony on anyone. It's a painful disease. It's a disease that brings up every negative emotion imaginable in both the victims and the families.
Please try not to let things get to you too much. Like Martha said: Shrea Shrea.
I found a bookmark yesterday and I'd like to share with you what it says on it.
SEARCH FOR SERENITY
The search is yours and mine.
Each finds his way with help,
But yet alone.
Serenity is the goal.
It comes to those who learn to wait
For each can learn to understand himself
And say I've found a
Joy in being I,
And knowing you:
A knowledge of the depths I can descend,
A chance to climb the heights above my head.
The way is not so easy all the time.
Our feet will stumble often as we go.
A friend may need to give some extra help,
As we once gave to others
When in the hour of fear.
This is no picnic path that we have found:
But yet compared to other days
And other times
It seems a better route.
We lost our way before:
Resentments held too long.
Self pity had it's way with us:
We found the perfect alibi
For all our faults.
We do not know what life may bring
From day to day.
Tomorrow is a task not yet begun,
And we could fail
To pass the test.
But this will wait,
While in today we do the best
Today we try to grow.
Today we live,
We seek to know.
Author: L. Presnall
Please remember to be kind to yourself and it's ok to not be perfect.
Thank you everyone. I will write more later when I can. I sure wish we could have a "girls night out" and talk in person over drinks and dessert... This is just too hard right now.
On the genetic test - it was done by Athena diagnostics in Massachusettes. I think you'll find it with a search engine. Or search for Apoe4. I will try to find some info. to copy and paste when I have more time (getting ready for church this morning now). It should only be used in conjunction with other tests because the results are not definitive. You can have the genetic markers associated with AD and NOT get the disease. You can get the disease without having the markers. But when you have the functional decline and you have the markers, then the chances are pretty high it is AD.
I do really appreciate the support on all of the issues I've shared. Like I said, I'll post more later.
Bless your heart. I applaud your decision to take things as they come as that's the only way to do it. As an old joke says, How do you eat a whale? One bite at a time.
I add my condolences to the others that your DH said such hurtful things. (((hugs))) It's hard to know if he meant them to drive you away to spare you what is to come or was just being mean, knowingly or because he forgot to hide it. Remember to take care of you, to choose wisely for yourself and your future, and to take what you hear with a grain of salt. As Deb's book is titled, your DH will disappear into the mist and you will have your life to live for many years thereafter. You deserve happiness and joy.
I wish we could all meet, too! That would be so helpful - desserts, talk, laughter, tears, and hugs. Maybe we'll have to each bake something or bring a few cookies and all be on our computers here at the same time! Not as good, but .....!
This is so heartbreaking -- but there's still a chance that something else will be diagnosed. I try to check the web site every few days with a prayer for you.
My husband initially brought up the D-word too. In fact, the lawyer that we spoke to said it was an option to preserve assets and on another web site a woman I saw postings by a woman who was the caregiver for her divorced spouse through Powers of Attorney, etc. In my husband's case, it was his fear speaking. Fear of not being able to hold up his end of the marriage, fear of "not being good for anything" anymore and being a burden, and fear that I wouldn't want him anymore. He was giving me an excuse to leave that no one could view as me abandoning him when he was sick. He needed a lot of reassurance for awhile. Ultimately, we decided to renew our vows and we had a very special wedding/vow renewal ceremony a year after he was diagnosed. The ceremony included the kids, and we all vowed "for better or worse" together. It seemed to be the reassurance that he needed, and he hasn't raised the D-word again even when we have an argument (I guess some arguments never go away in a marriage, although I feel terribly guilty whenever I lose my patience with him over something that I realize was due to the illness). Our marriage was ok before the diagnosis, though. I can't imagine the additional stress of Alzheimers on relationship that's already troubled, whether marriage or parent-child. It's hard enough being patient, supportive, grieving in your heart but hiding your fear from someone you really love. Sometimes a sense of duty/responsibility isn't enough even for angels. I don't think anyone here would ever judge.
Thank you all for your care and comfort. I am really really hurt about what my husband said. And no, our marriage is not strong, but it is a 16 year marriage that I have been committed to through good and bad times - and I love him and still want to be married despite what is to come. It is just too much to explain in this way. When he first made the comment, I just left the room in tears. Later I asked him what conclusion he came to when he wondered if he would be better off without me. He said "I didn't." (come to a conclusion). He then went on to say he wasn't planning to do anything at this point (like file for divorce). But I feel like I have lost so much security myself - just knowing he isn't sure about staying with me. I do think there is a small part that is him wanting to protect himself from possible rejection because he has made comments in the past that he thought I would want to divorce him (before the illness even came up). But he said some other things last night that make me realize that he really does think he might be better off without me. I can't hardly wrap my mind around this right now. I knew he didn't love me the way a husband should love a wife - but I was still shocked at his comments. I'm sure I'm in store for more of the same as he does lose his "inhibition". And I don't know how to figure out what to do about this - other than cry and pray. (He is not a christian. I am.) His parents are both deceased and he has no siblings and no close relatives. It hurts even more to know that he has NO ONE else that would be there for him through this - and he STILL thinks he might be better off without me. So hurt... This journey is going to be hard. I'm glad you're here to listen and care.