On April 13th Kathryn we were talking when right in the middle of a conversation Kathryn suddenly asked me "who are you". I was surprised when she did it but she went right on the conversation as if nothing happened and has not said it again. It upset me that she said it because I knew it was a sign of things to come but I was kind of prepared for it. But last night as we were laying in and bed she suddenly said "sometimes I don't think you love me". I can not start to tell you howmuch that hurt. Have any of you had your spouse say that to you? She has told told me over and over how sorry she is that she is sick and that it isn't fair that I have to take care of her. I always tell her that when we married it was for better or worse and that she would do the same thing for me and that I loved her and it was my job to take care of her.
She does get confused and I am hoping that she may have meant to say that she doesn't know why I love her. She used to ask me why I loved her. That is a question I could never answer. I would say you don't need a reason to love someone because it is something in your heart.
I tried to asked her why she felt that but she couldn't answer and I think it wasn't fair of me to ask her why. She said she didn't know why. I can't stop thinking about it. I don't know if maybe I did something or it is because of the ALZ. But I do know it really hurt.
JimB, I know that must be terrible but I have not experienced it yet. My dh knows everybody and recognizes people he hasn't seen for years. Evidentally, that part of his brain has not been effected. I would imagine in your case it is the AD progression. My dh will try to tell me something and forget the words and lose his train of thought. He knows he is doing it and just shakes his head and says he will have to try and bring it up again.
For those of you whose spouse are forgetting your name, is that not the same thing. only different. I am famous for meeting someone and turn around and have completely forgotten their name. Our brains are extremely complicated and the AD symptoms seem to be a lot different in the way it effects people. I am rambling again and this doesn't really make sense. But, I do understand your being hurt. Good Luck
JimB if you are going to survive you've got to learn to separate the disease from what your wife is saying. It isn't her saying things that hurt-it is the "monster". It is very hard-but you listen and then move on. Your dear wife won't remember what she said to hurt you and whe won't remember what you said to make her feel better.
my LO told me one night in bed that I would have to leave because her husband would soon be home an he was a very accurate marksman,now that set some wheeels turning I'll tell ya,she spent the next hour or so getting out of bed an watching the drive way, for me? to come home,I just take it with a grain of salt an put it in the journal,she loses her purse about twice a week an then accuses me of stealing her money,always hiding her purse,thinks folks come in the house an steal her clothes,the list goes on,an her kids think she's doing fine @#$%^&
For 2 nights in a row, we have had similar discussions. Saturday night, we had just turned out the lights when my husband told me that he didn't know when his wife woould be home. Last night, same situation, he asked me if I lived far from here. I told him that I lived right here which was why I was in the bed next to him. He laughed and said that he had asked sort of a dumb question.
I guess I thought that it takes a couple of years to go between stages. It was just last year she was even diagnosed. I know she had ALZ before being diagnosed but it just seems like it is advancing too fast. My understanding last years was she was in about stage 3 1/2 or 4. and now she has all but one of stage five and about three of stage six. I guess I'm just not ready for how fast the different things come up. And it just hurts so much to see her have to go though this. I know it upsets her and I guess I just can't understand how something like this can happen to someone like Kathryn. I guess everyone on here has these same issues at some point. It just isn't right.
JimB, my husband was diagnosed in February 2007, and was in Stage 4. Two years and three months later, he's in early stage 7 with aphasia. He can barely feed himself with total concentration and if I cut up his food for him; he can dress himself if I hand him his pants and after he puts them on, I help him with his shirt. Strangely, he can still tie his shoes! However, he lost the ability to talk over a year ago. No conversation..he doesn't know that I am his wife; he just knows that I take care of him. He's sweet - most of the time. If you try to take his vibrating toothbrush away from him, he'll hold onto it like a two year old with a sucker. <grin>
You HAVE to build a wall around your heart. And keep adding bricks. Our spouses (spice) are leaving us and they can't help it. It's Alzheimer's. We can't prevent it either. We can just take the best care of them we possible can as we watch daily as they deteriorate before our eyes. It IS heartbreaking to watch..you feel so helpless. Hence, the wall. It allows me to love the person he has become and take care of him without trying to hold on to what he was and can be no more. Without the wall, I'd be in the abyss, and I have too much self-preservation to allow myself to go into that abyss. So the wall has gone up. And I add more bricks every time he goes further downhill. This enables me to give him the care he needs while I hold on to my mental health.
I hope you understand my explanation of how I am handling it. Everyone handles it a little differently. A lot of spice try to keep them maintaining or try to get them to improve to hold on to them longer. We all deal with this the best way for each of us. No one way works for everyone, and no two AD patients react the same. However, we are here for each other and share what we do in the hope that we help at least one person out there.
Mary, I also work on the "wall". I do not look upon my dh as my husband, so to speak, any more. I see him as a loved one I need to care for the rest of his life, much like a disabled child. I work on keeping the wall up for the same reason you do and it does help to try and keep ourself going on an even keel. After this is all over with I will try and "regroup my life" knowing I did the best I could considering the cards I was dealt. It is neither of ours "fault" we are having to deal with this just as it is not other families "fault" they are having to deal with whatever crisis they are personally dealing with. Make no mistake about it, every family is dealing with some kind or "personal crisis" and usually we are unaware of what it is.
My SIL is almost 90 and during her lifetime she has dealt with 2 Retarded children in her home. 1 still there in her 60's and now blind and diabetic. As, is her almost 90 yr. old dh bedfast, and other neuroligical diseases. She has help during the day with an aid and her daughter but her attitude has always been upbeat and accepting. I have never understood how she "did it" and feel pretty bad about her being in so much worse shape than I am.
Dear 20 - You didn't do anything to make her say what she said--don't beat yourself up. Love her for it, like a child, she can't help it. My husband yelled at me about being w/other men. I'm not young, standing in my granny gown, I told him, 'but I'm right here with you.' 'Oh, no you're not,' he growled at me. There's no reasonable response you can give, you just have to let it be and know that somewhere inside, they still truly love you. It's nothing we do--good or bad, and it's nothing they say--good or bad, it's just the way it is. The only thing we can do is keep caring and loving, there's no changing their actions or words--just understanding.
Oh my, your situations sound so familiar. My DH was diagnosed with AD on July 2, 2008. I had suspected it for a few years prior to that. At that time I thought he was stage 4. He is definately a solid stage 5 and starting to show signs of stage 6. He has forgotton my name but that hasn't been so bad. It is tough when they stand right next to you talking to you about you and don't know who you are. It is tough when they can't find you and you see them upset and you ask them who they can't find and they say your name and they don't even know they are talking to you. It is tough when in the middle of the night they wake you up and start talking to you and you can't understand a word they say. Or the clock keeps ticking and they think it is money being counted, not time. And it is tough when everyone says to you, he's not so bad and you know they don't have a clue.
My DH was my soul mate. Although I still love him, it has changed. He isnt' the same person any more and I am more a caregiver and decision maker than anything else. It is hard to keep a wall up but I find it is the only way to make it through.
This is truly the saddest part of living with this "monster " illness. I have not had to deal with my DH not recognizing me; I pray that if and when the time comes I will be able to build my wall of courage and deal with it the way all of you have been able to do. I admire you folks so much.
Here's one to lighten things up, I had a nice bubble bath, relaxed with a glass of wine, got all relaxed, felt great, went to get in my pjs and could not find my glasses. I looked everywhere, I looked everywhere 3 times, finally DH says "what's wrong with you?" I said, in a rather raised, irritated voice, "I can't find my flippin glasses", he yells at me, "well, I can't help you!"?????????????????????????????????????????
I guess I didn't say this right. I have trouble sometimes putting into words what I am trying to get accross. It isn't what she says that hurts me. It's what she is having to go though that is making her say it that hurts me. It's seeing this happen to her is what I meam to say. I hope.
Bubble bath and a glass of wine.... I have never tried that Susan.
JimB, you are hurting because of what she is going through. I understand that. It certainly isn't easy and the hurt goes on. Stay with us - we'll be here for you.
And, go for it, JimB - that bubble bath and glass of wine! Do you good.
You are all really special people. I so admire your strength and the "wall" that you can build. Hugs to you all. Kinda drained tonight..hitting the sack. Goodnight everyone.
Tonight I was going through more of the stuff in my husband's "office". He was a mathematician with connections all over the academic world both here and abroad, and he lived for his math. The boys in particular adored him but I always felt he was not really thinking about them (or me) as they were growing up; he was absorbed in his math. I spent a good bit of time keeping them from pestering him while he was "thinking." So I'm not surprised to find walls lined with mathematics books, reprints neatly bound in looseleaf binders (so far I've cleaned out three dozen, with as many more, at least, to go), and many many pages of notes on the math. And I found funny letters he'd written friends, that really brought back to me how much he (and I) have lost. (I should note that he meticulously kept copies of every letter he ever wrote, including love letters to me before we were married!)
When I saw "Proof" in 2001 (on Broadway) or so, I was struck by how closely that paralleled his life: the professor who was working on serious problems, long sought-after proofs... before and when he had dementia... and how they were all nonsense in the end. This was before my husband had dementia, but I remember wondering if that would happen... so sad.
My DH used to do beautiful oil paintings. It has been several years now since he tried. I tried to convince him to try for quite a while but now have accepted that he will not paint again. It is so hard to think of getting rid of his painting supplies, the canvases, brushes, paints, easels, etc, etc, I just don't know if I can or for that matter, how to go about getting rid of them. It is frustrating, because they add clutter to the house, but getting rid of them will make it all too real and final. Almost like deserting him in a way.
Mary's comment about building the "wall" is exactly what I have had to do. I no longer see my husband as anything but a disabled person entrusted to my care. As far as my situation is concerned I believe it will be easier for me when he is unable to remember that I am his wife. It seems like our emotional detachment should "match" -- sorta like our love did before he was lost to me through FTD. BTW, he was a Chemical Engineer and can still rattle off huge words but can't remember he ate lunch an hour afterwards.
He has not forgotten me or my name at this time. However, he doesn't remember the names of our neighbors that we've had for 40 years. He doesn't remembe names of peoplehe's known for 40-50 yrs. So far he still remembers the kids names. I know it's coming and hate to see it down the road.
As I have read some of the posting on here I see that many of our loved ones have special talents and higher education such as in the cases of briegull, gmaewok, and Weegun whose loved ones are painters, mathematicians and chemical engineers and I am sure there are many, many others. My Kathryn was a fully functioning court magistrate until two and a half years ago when she was told to either resign or be fired for poor performance. I can’t imagine how hard it must be for them or any of our loved ones to have their knowledge slipping away as this disease is taking over their minds. This must be the worst kind of torture.
Anchor20, Bubblebath & wine go great together, add some candles, bath pillow, soft music, and it's heaven, even better if it's a tub for 2, ahhhhhhhhhhhh, somebody slap me, I'm dreaming again, lol!
JimB, surprisingly at this point it doesn't seem to affect him at ALL. For many years I was discouraged from going into his room except to collect toilet paper from the big package that wouldn't fit into the bathroom. SO I had little idea of what a mess it was. When I finally got up enough gumption to go in and start emptying it, I did it after he'd gone to bed, silently. My daughter would sneak boxes of recyclables and trash out without him knowing.. and neither of us liked this. Much of the "mess" wasn't really mess; it was every box every delivery or purchase had come in, and plastic bags carefully folded and stuffed inside other bags. But we couldn't walk into it, there was so much! And he hadn't been into it for a couple of years. And now doesn't seem to mind in the least that I'm in there throwing out his precious holdings. (I'm cataloging his math books, to hopefully give them to Brown U. - they've asked to review the holdings - or possibly to sell online)
For a couple of years before he stopped using the computer entirely, he was totally producing gibberish, or was sitting there typing on a disconnected laptop with no battery. In that time he WAS very upset about it. But now he just says, "I can't do that anymore; I have those holes in my head.." and forgets it!
Susan, I think may that is just a little too much for me. I think I wwill go play golf instead. I find it relaxing because I can think of anything else and play golf.
Briegull, I just think it is so sad for every single one of the spouse's you post about here. I hope that brown U will take it and keep it all together if that is in your best interest. It would be a shame to see a life times work not continue in some way. However I think that if you do end up selling it online. That it will be used to help you and your DH in the future and in that way it will have stood for something that in better times he would want to.
We don't always say it , but we (men) want to make sure our wives are taken care of in the event we can not be there to see to your needs. I have been saving to make sure Kathryn would have plenty of money in the future. It is normally the man that preceeds the wife in death. So I think in the end your DH will happy with whatever you decide is in your best interest.
have no clue why but my DH still seems delighted he is getting his state bar magazines every month:) he cant understand what hes 'reading' much, but he goes thru the pages and over the label saying his name and address and its a 'lawyer' mag.. somewhere in there i believe he remembers something. i cant bear to not resubscribe to the mag or his atty dues every yr for this reason. and there are still alot things from his practice in 'his' office i cant bear to put away. it would be too 'final' i agree. divvi
I think I know now why I am so down lately. So far I have spent a small fortune for a professional organizer to help me declutter and organize the whole house (and garage). This was necessary due to downsizing from a 4 bdrm 2 1/2 bath to a 3 bdrm 2 bath plus all other rooms being smaller, plus my MIL stuff taking up half of the 2 car garage (she passed 2 yrs ago). In going through her stuff first, it was tough disposing of all her drawings, paintings, notes and notes on artwork, crafting items and supplies (she was a high-school art teacher and very talented). Then, we started going through OUR stuff, and it brought back all the memories of the way we were, and was very emotional, and is still, since we are not done yet. So I know what you all are feeling, believe me.
Divvi, I bet your DH likes his Magazines for the same reason kathryn likes doing the laundry. I think it is a comfort zone for her. She can't think of what else to do so she does the laundry. And boy does she ever do the laundry. If I take a shirt off and lay it down I better have everything oout of the pockets because if I don't it will all be washed. She washes clothes everyday. It doesn't matter if it is one item or a hundred item. I think she just feels go doing the laundry. She has worn out two washers in the last year. My father told me she was wearing out the washers and I told him its ok. I will just keep buying new ones for as long as she wants to do the laundry.
By the way. Kathryn gets really excited when she finds money in the washer or dryer. She will bring it to me so I can put it in our trip jar.
So if it makes him happy to read his Magazines what the heck. It the Bar dues is getting to high, I bet one of the lawyers you know would be happy to donate his old ones to your DH.
Divvi, if you have older Law DIgests, maybe you can re-cycle them and give him ones from a year ago, instead of a new one? Or, call the Bar Association Office and see if they have "inactive" status fees, to keep him on the mailing list but not the huge fees we pay to renew our licenses. I'm still a licensed Real Estate Broker, and I know the Real Estate Commission has an "inactive status". The Bar Assn. office used to be on a side street behind the State Capitol. I'm sure they have stacks of old issues they'll give away.
My DH "looks" at his Smithsonian Mags, Economist mags,etc., but I'm certain he doesn't read them for content. I put new "old" issues on his side table regularly. I don't believe he notices. Your DH might be more able to read than mine, however.
Jim, I'm saving any of my husband's publications, of course, and any of his writings that didn't go into pubs. I'm not just trashing things! But in his research he made copies from library books of a great many articles by other mathematicians, and carefully put each one separately into a binder. These are easily retrieved from any good library, and indeed are mostly from Brown, and in his papers he also annotates everything so they could be looked up by anyone interested. [It happens that Brown has an extremely distinguished pure math department, or has had in the past, and since it's an old institution it has received many gifts of math books.] I may offer the books to other local universities too, but the journals, which are now all on-line, even the ancient ones, are alas useless. He DOES still get them, and does still leaf through them.
I am finding it fairly easy to do all this cleaning now but I know it would be really awful later. Since we're stuck here, for the time being, might as well put me to work with the winnowing.
thanks for the ideas. he is inactive but i still send in probono contributions to equal his atty dues so he gets the mags free with it. he would want to contribute to that i am sure =
he is finding the tabloids at the grocery checkouts quite enjoyable as well with all the nice people = girls:) to look at too. i can hear him talking to them and flirting outrageusly=, something he has not forgotten. hahaha. i gave up my insurance license when they changed the continuing education to half classroom which i couldnt do. sigh.. i didnt want to but non the less... something else to worry about. divvi
It has sunk in to my husband that Mother's Day is coming up. He's also in one of those phases where his "mother" helps him get dressed in the morning. She's been dead approximately 30 years.
This morning listening to NPR advertise buying roses from them to send to your mother, he said, I should buy some for my mother. She takes care of me well.
My dh still resents my going someplace and leaving him home. He gets visibly upset and restrains himself from saying too much, although he could likely not get the words out in a sentence. Tonight, he asked my where I was going, to which I replied nowhere. I invited a friend to go to a Mothers Day Tea at my daughters Church tomorrow and she called about arrangements. After I got off the phone he, as usual, wanted to know who called, so I told him about the tea (I know, should have waited until ready to go out the door) being at the Church and I had invited Francie to go with me. He said "when am I going to have a day off". I asked him again what he said but he wouldn't repeat it. Now what am I supposed to say to that?
He knows he has problems with memory, speech, walking but he cannot comprehend why I would want to go somewhere without him. This is worse for me than the driving issue. Everyone has their own thing that is worse.
Lois, I ask you to remind ME...and I will now remind you, that sometimes we just don't reply to their questions, such as "when am I going to have a day off?" The question was not a question, it was an Alzheimer comment. We can't reason with them, explain to them, convince them, teach them. We agree our 2 LO's are about at the same stage. You need to be ready to remind me of the same things when I post a comment, which should be today, but I'm just too tired to post much.
My CHF is acting up and I can barely breathe. Had a tough day with DH, and the DOG,.. and Son, and I wasn't my usual resiliant self. Suffice to say...I'm planning a "prison break"...don't tell a soul! If ONLY that was true!
Sorry, Nancy. Let's hope tomorrow is better. Actually my day was pretty calm here other than his hateful reference to my day off. He had that "hate" look in his eye you have all seen. Good Night.
and it will be. Bless their sweet hearts.... I know he would NEVER have chosen this...and would be sooooooo remorseful... both your "he" and my "he". There were good times. Tomorrow will, indeed, be a better day! It always is.
imohr, i havent seen the 'evil eyes' in a while now but my i remember how they bore holes in my soul. if you have seen the AD evil eye you wont forget it lightly. hope today is better for you. i had the same going on for many yrs i couldnt go anywhere without DH in tow. he also couldnt understand why i would want to go anywhere without him- nancyb i hope your day is better as well. things seem to mount up and come in waves... sigh..divvi
Just putting my foot in it here. Has anyone considered arranging a "day off" for their LO? Arrange for them to go somewhere (maybe just for coffee, whatever) without you? They might like it; you'd get a little break; and it might relieve the strangling tie of their dependence. Just a thought.
We have a friend (male) who will call to see if DH wants to go for a ride, for a cup of coffee, etc.. It is so nice - he just does it on his own and will come pick him up. They will be gone for a couple of hours. My problem is trying to "decide" what I will do during that time!
I know my husband is very confused. I am not in denial of his disease. Sometimes he is sooooooo sweet and loving on the phone to me. Other times, when he is in pain or due for his medications or simply very tired, he becomes almost demonic. I understand. Please keep in mind that my DH is in a nursing home in Florida, I'm in VA. Lots of family dynamics and his health matters are keeping him from being brought home, even to a nursing facility in my area. I GO NUTS when I call him and he is sounding perfectly alright, very lucid...I call him three times a day. Morning, lunch and goodnight calls. Today, his drama was that he was lying there naked, had to go to the bathroom, there is an alarm tether on him that is making noise and no one is responding to his nurse call button. He started screaming for help and really got out of control. I called the nurses station several times. The last time, they said he was (had been ) taken care of and he had just been given his medication, for me to calm down, that he is very confused. I'm so far away and don't know what's going on. I'm not allowed to talk to the nurses or his health care providers because his sister, who is the healthcare surrugate, will not put me on the list of people that are allowed to talk to them about his condition. I just go to pieces not knowing what's going on!I can get no information from HIM that makes any sense. To him, he's been imprisoned there and has no hope of ever leaving. I am going to talk to the social worker there on Monday morning and try to gain information...such as, is his sister really the only one who can grant me access. I"M HIS WIFE!!! Married to him for almost 26 years! I'm hoping not to have to hire another attorney in Florida. My lawyer says things(the divorce proceedings the childsren began) have to play out in court and it will soon become apparent that neither of us wants a divorce. Pray for me. My biggest fear is that something should happen to him for the worse and I will be the last to know about it. He still knows me, tells me how much he loves me.
Stuntgirl, I'm not a lawyer but I have learned that the words "with a medical certainty" carry a great deal of weight when dealing with ALZ. I also don’t know the timeline for your DH’s diagnosis. But you may want to talk to you DH’s doctor and see if the doctor is willing to put into writing how far back he/she is willing to say with a “medical certainty your DH’s ALZ can be dated. It may be that it will predate your DH’s naming of his sister has his healthcare surrogate. If that is the case then you may be able to get it revoked or at least force his sister to add your name to the list allowing you to be informed about his care and have a say in his treatment.
Again, I am not a lawyer. However, I found these words written by a doctor did carry a lot of weight in dealing with the Social Security Administration so they may help you to.
Actually, I have a friend who has taken my DH out to lunch several times, and he also has taken him to diner, so I could go out with the girls. He's brought him to the church men's club too. so Dick has had a day off, and I must say, he comes back refreshed. One of the reasons I though day care would be good for him, but he refused to go. to many old people. LOL
On Mothers Day, my kids came by with cards and little gifts. After they left he wanted to know where his were. I said it is Mothers Day, are you a mother. He totally ignores my birthday and Mothers Day, but enjoys getting gifts for his special days.
last night watching the late hockey game,wife came out from bedroom about 12:30 an asked if I was staying the night,she then pointed to another bedroom an told me I could sleep "in there",when I asked why I couldn't sleep with her in OUR bedroom she told me someone else was already there,I think I'll write a book
My DH sits on the comode but has still been "not adjusted properly". I told him if he would take his hand "and adjust himself properly" he wouldn't do that. Even demonstrated for him this morning. Yesterday, after telling me there was "pee" on the floor I gently suggested he do the "adjustment" and he told me. "Now I don't think I done that".