So, here is my rant... About ten days ago I was informed that the underwriters turned us down for life insurance for my hubbie. That was a blow in many ways. If you remember, my DH is only 41 and we have a 15 year old and 7 year old at home. I have a very small policy on him through my work but were really hoping we could get more. So the financial aspect was a blow, but the bigger blow was just having one more tangeable piece of evidence that this MCI/EOAD thing is real. The day after receiving this news, my parents arrived for a one week visit. They were coming to check on me because they were worried. My mother and my seven year old stayed overnight on our boat and in the middle of the night, my mom fell and broke her foot. Then, my daughter woke up the next morning and had a seizure while sitting on the potty. So that bought us a trip in the ambulance to the hospital. Thank God she is ok (she has had seizures before but we thought we were done with them). As I am sure you can imagine, I was pretty much a wreck for most of the week. The thing I found most difficult was how alone I felt during this week from hell. For instance, when we were in the ER with my daughter, I was doing what most mom's do, adjusting her pillows and the angle of her bed, basically fussing with her. I can't even count how many times he corrected me, and put me down in front of our girl. It was all very subtle but it was definitely there. At one point I was so upset I just left the room before I blew up at him. When we were finally released from the emergency room after 4 hours, and were putting our little one in the car, all he could talk about was how horrible he felt. Granted, the poor guy had a bad cold and sinus infection but I felt like screaming "Our child just had a seizure! I don't care about your runny nose!" So, I was very short with him most of the day. Then, late that same evening he asked me why I was so angry all day and I apologized and said that what with my mom's broken foot the day before, and our little one's seizure and my worry over DH's health, I was very cranky. Well, to make a long story short, he escalated and as I got up to leave the room and he threw the "f" bomb at me and slammed our bedroom door in my face...I was so hurt and embarrassed because my mom and dad heard the whole thing. I ended up leaving for the night and staying in a hotel room. After a long talk with a dear, dear friend, I decided the next morning that maintaining a peaceful atmosphere in my household was my number one priority and so I approached my hubby and apologized for being cranky and angry with him and thereby not honoring his position as the father of my children. He was appreciative of this. However, in the past, he would have apologized for cussing or losing his temper with me and would have acknowledged my embarrassment about my parents witnessing the whole thing...but not one word. I purposely decided not to call him on the behaviour...trying to live my some of the wise words i have read on this site...I wonder if he didn't remember his part in it, anyway. I really felt so alone. I so desperately needed to have my husband put his arms around me and recognize how horrible it was to have our daughter lying limp and seemingly lifeless in my arms. Instead, all he could do later was to criticize me for crying over her while we waited for the ambulance (According to him, I was getting hysterical--even though I was crying very softly). But I know in the past, he would have understood my reaction to the initial event and my need to fuss over her. But there was no insight there, at all.
So, part of the disease? We don't have any diagnosis yet...just treatment with Aricept. But I struggle with the question of disease vs. just plain old insensitivity/selfishness/bad behavior. I have seen signs of this type of behavior (some much worse) going back to his very early thirties. And It seems to be increasing in frequency. Sometimes I wonder how I will be able to stand what those of you who are at much more advanced stages, have to stand. I wouldn't say ours has been a happpy marriage for the past ten or 12 years so I feel that I am starting out depleted. Every week I see slippage. He has his zipper down a lot now (never used to happen) and last night our daughter asked him what the "mac" meant in "mac and cheese" and he couldn't remember. He told her it meant noodles and cheese and then had to go look it up on a box in the pantry. He saw a picture of the two of us on our boat, taken two days ago and he asked "now, when was this?" Thank God my mom and dad were here because I did get some much needed loving from them. Anyway, thanks for letting me rant. Things are settling down here. Making peace my goal has helped me immensely and my daughter is doing well, and my mom's foot is going to be fine...so thank God for these things.
Sorry to hear about your bad week. I wish I could tell you that it will get better, but I have found out through my situation over the past 5 years it gets worse and you need to develop very broad shoulders to survive.
My wife and I have had a great relationship before AD, but over the last year she is in what appears to be a rapid decline. It is rough to be with someone who you love, but no longer like due to the AD.
We moved to Florida 9 years ago and both of us were very active going to the Gym, riding on my motorcycle, going to the beach and just enjoying being together after raising 4 children and then the demon of AD raised its ugly head. I have had to watch her decline into a person I do not know anymore. We do not go to the gym anymore or ride the motorcycle together and now that she can not control when she needs to go to the John we are pretty much at home most of the time and I have become a full time caretaker.
My wife in all the years of being married never had a harsh word, come out of her mouth. Now she has frequent anger moods and is very nasty when these moods come (a daily occurance) for no reason at all.
I get 4 hrs a week away from her, because my daughter takes her and I live for these 4 hrs. This weekend has been HELL!!. She has argued over taking her meds, won't get out of bed, tells me she is going home and will not cooperate about anything.
The toughest part I have to deal with is the being alone with someone who really seems to be there to make your life a living HELL. Conversations at this point make no sense and she is an all around a difficult person to deal with.
I guess what I am trying to say is you need to remember the good times and memories to keep you going. Your spouse needs you even though they are not easy to deal with. It does not get easier and the hardest part is keeping your own identity.
I am by no means an expert, but I have come to realize" it is what it is". Not what I want it to be. It must be hard with children at home, but the good news is you have someone to talk with that is on the same page with you.
Your husband does not know he needs you, but you do.
I keep telling myself someday things will get better me and I will have a different life and it helps me feel better.(that of course is if she does not drive me crazy).
Stay strong, don't take it personal and most of all LEARN TO WALK AWAY when he gets upset, because he will forget what he is angry about. If you argue it just gets worse and your upset and he passes through his mood.
Feeling alone: ✓ Wanting to lean on husband and realizing I can't: ✓ Husband clueless about or miscontrues my mood: ✓
Then there's the whole thing about how being turned down for life insurance made the diagnosis that much more real to you. I experienced that exact feeling when we were approved (and rather quickly) for SS disability. "Ok..." I remember thinking, "it's THAT clearcut, is it?"
Yes, your shoulders get broader, but...right...it never gets easy. And who knows how long we have to go here. We just find little ways to cope every day, and other things that please us and give us pleasure and joy, and maybe make them more important than they used to be.
Kirsty; Both dbertol and Emily have said it well. You seem to be at that place that all of us have been .. in between thinking its the disease and then really "knowing"its the disease. First< I am very sorry for your week.. I am sorry that no matter how much you needed comfort it was not there.... and I'm afraid it will never be there in the same way that it once was. Many can tell you about that "aha" moment or time when they realized things had changed for ever. I still remember waking my husband up in tears one day after I fully realized that something very important had not been done even after days of reminders and his assurance he had handled it. I remember sobbing something like you are scaring me and then looking into his face for reassurance and seeing just a totally blank stare back. As far as an actual diagnosis, it never seemed to matter much to me . I live very definitely in the mode of " it is what it is" .None of us know the future,so for now I encourage to accept things and your husband the way things are. Finding other things that make you happy is I think the key to survival Please come here and vent often, and be assured that you will find others who really understand and do care. I hope your daughter and mother are doing well...
Kristy, my heart goes out to you and all the others who have children still and home and deal with AD. Yesterday I needed to do a chore and my husband kept telling me it wasn't necessary and was mad at me for wanting to wash our rig. I was about to tears when I decided to set the kitchen timer for 5 minutes and answer his questions with patience for that long. I don't know if this would work for you, but I found just setting aside how angry I was and answering the same questions over and over for five minutes helped and before the time was up he agreed to go along with my intentions. It helped me to realize that what seems like an eternity when you go round and round with the same thing is actually takes very little time. Good luck to you and to all of us!
Yes, Hang ON Kirsty! Amen to all of the above. I think we all have to find that particular something that gives us the opportunity to just breatheee for a bit. For a few years, I thought we had to KNOW what was wrong..as if by KNOWING, we would then be able to fight this monster and subdue it. Well, we do know but my husband doesn't agree and he doesn't KNOW that he behaves irrationally, impulsively or mean. I am the only one in the ring fighting this thing and he's 'just fine'.
Each new day brings a hope for a good day. Hopefully, your family can be supportive and hopefully you live where you can find caregiver support for EOAD families. That might be a challenge, just as in my area, most of the AD caregiver groups relate more to the patients who are in facilities and bedridden etc.. Honestly, this site has been the most informative and most helpful to me.
Maybe this week will be one of the better ones for all of us.
Anxiety medicine like Lexapro helped my husband after he started showing anger and attitude problems. I hadn't realized that I was not the only one depressed about this disease, of course he was too but he wasn't voicing his feelings so his feelings showed in other ways. Maybe these type of meds could help you DH.
Hello everyone, Thank you so much for your words of wisdom and support. It was very helpful. You validated me and that is hard to come by now-a-days. One of the things I find so difficult is that he seems so normal so often. My heart softens and I mold into him (if that makes sense) and then something else happens that wounds me. However, it has helped immensely to know that there is a disease process going on here. It has helped me to put SOME barriers up. It also has freed me from so much guilt that perhaps I was doing something that was making my marriage so difficult over the past few years. That has been very liberating. How strange the things that seem like blessings now.
One blessing that does not seem strange is you all...you are a God-send.
I have thought about the possible need for anxiety meds as he does seem to get anxious much more easily...stands to reason
I like the part where my LO gets a smirky grin and says, "See, there's nothing wrong with me; YOU need to see a neuroligist; my memories fine" after he does something soooo bizarre I stand there open mouthed... Sometimes I get mad, sometimes I just redirect... And it is the random mean, selfish, cutting remarks and rotten behaviour that is so hard ... The attack on our own goodness by the ones who are supposed to love us. That for years did love us. It is all part of that losing his brain one cell at a time thing... I feel for the intense pain we all feel.
Like Laurie says, "Finding other things that make you happy is I think the key to survival." And occasionally venting.
My husband is in a snit right now. It has been going on since last night. Last night there were angry words. This morning I think he is not talking to me. I couldn't read his mind last night. I still don't know what he wanted from me. The word finding and general lack of verbal skills are getting worse almost on a daily basis.
I totally understand, and agree, with MsAbby when she said, "And it is the random mean, selfish, cutting remarks and rotten behavior that is so hard ..." Yup, that is exactly what I'm dealing with right now.
I'm not sure what exactly set him off other than my not having a clue as to what he meant when he talked about me doing something with the "photos" "they" had given me. No one has given me any photos, not in years and maybe not ever. And the word "photos" might not even have anything to do with photos. And I don't have a clue as to who "they" are or even if the word "they" means people or objects.
On the other hand I have told him I am going out to lunch with some neighbors on Wednesday, and that alone could have set him off. I will be away from the house for a couple of hours and he doesn't like me going out without him. He is perfectly safe being alone, but even going to a doctor's appointment or to the library is no longer acceptable.
One of the major factors i think for us what i was so totally in love when we married. if not for this, i dont think i could have survived all these yrs caring for DH during all the nasty times and agressive behaviours. If i had it to do over again, i would get him into a daycare facility and out of house at an early stage and get help inside the home earlier than i did. its been a godsend to get out into the real world and out of the caregiver role for a few hr/wk. dont let the stress make its mark on you so like the others say try to keep a life for yourself separate from the AD. i didnt and now 8yrs later have hardly any friends and no 'me' left. life during and after AD will never be the same. Divvi
Wow. My heart aches for us all. What a rotten, vile, ugly, evil disease. I am just starting out.
I wish there was some way I could reach out and give you all a physical helping hand instead of just the emotional "I'm here for ya sista/brotha" helping hand.
Hmmmm, wouldn't a cruise, just for us, no L.O.'s with ALZ. allowed (of course, if you bring a L.O. sans Alz, we wouldn't tell! -hee-hee). There would be lots of sun, water, dancing, and just refilling of our cups.
Divvi, we are your friends. How can you find your "me" again? It is still there...
Oh, I forgot...Hee-hee...MsAbby, my husband keeps saying, in a teasing voice, that he thinks I need to have some neuro-psych testing done because I keep forgetting things. It's getting a bit old because I wonder if he gets that the reason I am forgetting so much is because I have WAY to much to do...
The Alzheimer Caregiver Cruise IS for caregivers to "get away from it all". We only brought our husbands because they were functional, and we thought a vacation with all of us together would be nice, which it was. But the purpose of the Caregiver Cruise is for caregivers to relax WITHOUT the person they are caring for. Before our group, Patrick, the social worker/travel agent in charge of the CC, had never had the Alzheimer patient come along. He was in shock when he met our lively group. Click on the travel section on the left side of the website for information. I will be putting up more information on the website this week. Patrick is great - tries to accommodate your needs as best as he can.
Arrgh, I had this whole entry, but I timed out and lost it.
Strangely, my situation is sort of the opposite of what many of you experience. DH and I used to fight a lot and I almost left a couple of times. We fought over money (he would say I spent too much and I probably did at times, but I've reformed quite a bit!), or over the kids, going places, etc. Now that we've gotten to this stage of the disease, we hardly ever fight. We don't fight over money, since I pay all the bills, and DH isn't really attuned to our financial situation anymore. There are times when I yell at him out of frustration when he can't help with the kids or he can't do something I need him to do. I feel awful afterwards, but as I've read, he probably doesn't remember for long. It's ironic that it took this disease to give us a "peaceful" marriage. I'd rather have the fighting, and have him really "here" even if it meant we'd split up. At least he'd be able to participate with the kids.
Kirsty Holding Fast: Maybe it'll be like that with you and DH, since their personalities seem to change to the opposite of what it was, but I know that's no comfort. I want to say that I know how horribly difficult it is to go through this with young kids (I have 3 boys age 9, 7, and 2). I sympathize and relate.
I was exactly where you are about 9 months ago. Robert would just rage at me. He always accused me of wanting to leave him. One night he got in my face while I was sitting on the couch with our 9 year old daughter next to me and screamed red faced "I'm leaving you!!!!!" I tried to ignore him, but it seemed ignoring him only made him angier. He wanted to fight and wasn't going to quit until he got one. Our fights were getting to the point of being violent. He grabbed me one night and wouldn't let go. He would chase me all over the house and could pick the lock of any door I locked. It was awful. When he started turning the anger towards the kids (mostly our 12 year old son), I knew I had to do something.
I e-mailed his doctor and he put him on risperadol right away. We told him that it would help him relax at night so that he could sleep better. It worked a miracle. He is soooo much calmer and easy going now. He is also in the early stages. I have been so thankful that the medicine has calmed him during this stage when he is still highly functional. At least the kids will have good memories of their dad. Not the memories of him full of rage.
I hope things are better for you this week. Just remember, it may be more than you can do on your own to keep the peace. If there is a medication out there that will work to calm the anger, I would certainly go for it. Robert's meds do not make him draggy or zombie like or anything like that. Certainly make his doctor aware of the behavior.
I am so sorry to hear the stress that is happening to so many of you - I have experienced also. When my LO went for testing for his memory, I also had all of the same testing with the same people. So we know for sure who has the memory issue.He was so much in denial and had such a sudden change in personality that I felt I had to have proof that I was not having the memory issues. He has always been a very sweet, loving, well mannered man but when I began to see drastic changes, moody, angry, I was always wrong - I felt that we needed to get some help. But, knowing doesn't make it feel any better when he is very ugly to me, says demeaning things, lies to other people about what I do. I guess it is my lesson in learning to be humble. Thanks for sharing. It helps to know that we are not alone.
you have to remember "broken brain" not that it is what your LO would do if they did not have it!! It is SOO hard not to take things personal when you feel so crushed by it all already!!