I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. Yesterday I learned the meaning of the phrase - "Reality Bites". I'm still reeling from it. It is so important to remember that with AD, things can change in a minute, and you need to be prepared.
and unfortunately these 'bites' will become more severe as time moves forward. from forgetting tv, to where to pee, how to walk, and eventually even how to swallow. its so very sad and i cant think of any other disease that has such devastation involved for the afflicted person and their caregiver. there is no way to avoid these letdowns and miserable insights, they are inevitable along the way. the only thing we can try to prepare for is to not get caught offguard too badly.
Yesterday, I had something similar. We gave our dog a hair cut. We were going to wash two loads of laundry; our clothes with hair on them, and the sheet that we use under the dog. I washed the sheet and put it in the dryer. I then started the second load and it ran through. DH went to the washer to start the second load and found that I had already ran it through, so he put it in the dryer. A couple of hours later, I found DH putting laundry soap in the washer. He asked me where the clothes were that we had to wash. I told him that he had put them in the dryer and that they were probably already dry. He got the strangest look on his face. I could tell that he wanted to get angry with me about something but he just stood there. He then opened the dryer and took the dry clothes out. He said, are you sure that you didn't dry these. I told him that I had not, that he had. He then laughed and said, I guess we are going to do another load. It took me by surprise because he is usually on top of most of his chores. He usually only has problems with very short term memory issues, not something like this.
DH knows it is Christmas time. We have a tree up. He knows our daughter and family are coming from TX. He thinks today is Christmas and they are here. He said he was going upstairs to see if they were there. I told him no, not today. Later on we went to do errands. He asked if we were going to the airport. About every hour he asks who is coming today. It will be a long week if I have to count down the hours with him I am sure he does not remember that we went to the grocery store and the dollar store today.
I don't think DH remembers the concept of Christmas. He loves the decorations and the trees I put up, but doesn't seem to connect with anything else to do with it. Doesn't understand all the cards, the few gifts that have arrived or what they are for. Our anniversary is Friday - not a clue, although I did take him to the store to buy a card for me. I haven't looked at it, although I do have it to give to him to sign later. It may be a Christmas or Birthday card again!
What a beautiful Blog Joan, very well written, uplifting and also infinetely sad.
When my darling peed on his clothes, for the first time in his life, and in public, it wrenched so much, as he tried to act nonchalant. I took him right to the side of the car, amongst other vendors, and we changed him right there.
I think I am fine, then something like that. Then I have to become fine again, as I watch that beautiful small man fading away.
wrench, twist
I will check back in with you guys tomorrow, we leave on our trip after lunch.
I pray that our reaching out to each other is not in vain, it is too precious. I can tell you about the details of these things, and not have to feel ashamed for him.
IT BITES then turns around and bites again and again.Just when I think we are having an ok day and I give Paul a simple chore like"Take this dish to the dog ,sit it down in front of him and come back"simple right---no he takes it to the dog looks at him turns around and brings the food back and dumps it in the trash before I can stop him.How can they be so fast at times and slower than Moses the rest of the time????? I know I should have learned by now not to expect him to do things correctly but somedays !!!!!!!!!!!!
You are all so right...and it makes us all sad. Something so simple and they just can't remember it or sometimes even understand. In the past few weeks I have had to try to get to the TV remote before my dh shuts the TV off before we go to bed.
I have told him l00s of times you have to hold the power button in the off position for a few seconds or the cable box won't go off when the TV goes off. A few days ago I just decided he will never understand this small thing so II will just keep the remote near me so I can shut the TV off.
Yes, so sad Joan..reality bites! Just this morning we had to take back a pair of shoes that we bought for Dh on Sunday, just picking and trying on the shoes was an ordeal in itself. He just could not make up his mind what size felt the best on his foot, so we opted for a size and went home...today he said they were too tight and hurt his feet, he didn't want them anymore....so off to take them back, and get a refund of $100. If they weren't so expensive i would not have bothered.
Then all day, he doesn't remember that we took them back and keeps asking when are we taking them back.. pointing down to his old shoes! I am so tired of repeating the same thing over and over...and everyday, he says, "So what are we doing today"...and follows me around the house all day, I can't get anything i want to do done. Some days, just for short periods he almost seems like his old self...then in a instant he changes.
This is all so familiar to me tonight. Funny but as I've kept up with all of you, I never felt we were "at that Stage" yet. Yes, reality bites, and I've been bitten. My DH this morning was in such a good mood, felt good, said so. Had big discussion about new hearing aids, whether to keep or not, I don't see much difference and he says he doesn't either and they are confusing to him. (I really didn't think it was going to work, but you hope..quality of life, you know). He goes off to the post office, returns and a completely different man. Into room, really upset, crying, doesn't want to be "like this". Something set him off and from what I can gather, he got confused in our small town where he has always been comfortable. He tells me the story, his way, over and over and over for at least an hour, saying the same thing and trying to figure out why he had a lapse in knowing what he was doing. He routinely forgets but today was sooooooo different. He has never gotten a scared feeling like today. It really shook him up, more sure of the gravity of the situation. Going to be worse, reality tells me so.
My LO has a lawn tractor that has been his constant companion since we retired over 15 years ago. Today we hooked up the new attachment we've been putting together that picks up leaves. LO couldn't remember how to start the tractor. He kept leaning forward in the seat and trying to bounce I guess to get it to move. I finally went out and pointed to the key to turn and to his foot to push on the brake. Things like this always bring a reality jolt. Also he's been wanting me to look for his shovel that he'd "lost" so I walked the yard and around the sheds but nothing. He was getting very upset and agitated but I didn't find the shovel. Then later when we were hooking up the new attachment and I was complaining about the junkie garage there was the shovel in plain sight. So glad I "found" the shovel now if I could just "find" the knife he lost last summer that he keeps asking about.
My hb does not remember watching a game within minutes of it ending. Last season I subscribed to Center Ice. We especially had the Bruins and Canucks games highlighted. I knew he would not remember what happened 5 minutes ago in the games but I did it cause he enjoyed it in the moment. I didnt' this year cause we can't afford it. It does hurt, especially when it is their favorite team and an important game (like winning the Stanley Cup) and they forget it within minutes. But then, he always surprises when he remembers other things. But, sports games are within minutes. Since he forgets what just happened minutes before, I wonder how he follows shows? Does he just watch it for the moment not knowing the plot or does he remember? I don't have the nerve to ask. That may be why he likes games shows and others that don't have plots.
They should have named this disease "TLG" "The Long Goodbye". We try so desperately to hold on to our lives as we once knew. We want to believe that they remember, and we try to get them to remember. Sometimes they do, then the time comes they pretend they do, then they respond without knowing the reason to respond, it's just an automatic reflex. It finally hit me one day my poor DH still wants to communicate, while there is no thought process behind it, I will take whatever he can give, I just agree.
But like Lucy picking up the football just when Charlie Brown is about to kick it, it's amazing how often my expectations remain high even though I should know better. Reality keeps biting but, like Charlie Brown, I too often act as though things are as they once were, only to have that football picked up again and again right in front of my eyes! Why does it take us so long to change our perceptions and stop expecting our AD spouses to react as they once did??!!
acvann-never really thought about it but you sure made a DIRECT HIT with the thing on Charlie Brown and Lucy-that is exactly what I do over and over,just keep thinking the"ball" will be there this time-somedays I wonder who has the memory problem,him or me.Guess it is just wishful thinking that just because he does ok sometimes sure does not mean he will the next time! Wouldn't it be nice if we could put Lucy(ALZ) in time out for a while!!!!
I want someone to slap me in the face today. I am so depressed I feel that being slapped might be the only thing to help. It might hurt so bad, I would forget all the horrible thoughts that are going through my mind today.
My dh had 3 months of sleeping at least 16 to 18 hours a day..then for a couple of weeks he was back to somewhat "normal" only sleeping 14 to 16 hours a day. Now back to the 16 to 18 hours. It is driving me crazy. Can't plan breakfast or is it lunch at 1:00 in the afternoon when he gets up after going to bed at 9:00. Now it is dark when he gets up from his nap. Why does he do this? Is it his body or his brain that is giving out or both? At first I kind of liked it..but, not any more. I can't get anything done and I don't want to start doing anything in fear I will have to stop and fix a meal for him. Can't leave him alone. I would place him if I had the nerve even though I know he isn't ready just so I could have a life.
Also, he has started this thing where he can't see something that is right in front of him...well, he sees it but his brain can't tell his eyes what it is he is seeing. I have to walk over to where he is and point at it. He can be right in front of it and he says..."where is it"? A carton of milk was on the counter and the refig. was behind him and I said...."could you put that milk in the refig."...his head starting darting to the left, right, left, etc. I finally had to walk over and hand him the carton and direct him to the refig. which was right behind him.
Thanks for listening...guess I better start lunch or is it dinner?
both of the these you are seeing seem to be very common with alot of us. the sleeping is also something they go thru. i know many here complain about how long they sleep. i also tend to believe it can be medications that produce drowsiness as well. i know my own DH went thru this as well and slept many hrs during the day. go figure now in late stage 7 he sleeps less than mid stages. also the loss of vision even periferal is called 'anosognosia' and is also a well documented loss too. ther are several blogs about it if you do a search for the word. it seems visuals become distorted and they are unable to recognize objects that are very common. i think most see that the sleeping does become less along the way. yo may want to go over his meds and see if they are a culprit as well. divvi
As far as meals for him go, start prepping things that you can microwave in a minute ortwo or stocking in microwavable meals. Consider sandwich fixings and canned soups, stews, and the like. You may prefer cooking meals for him some of the time, butwhen their schedule becomes so discombobulated, you have to con sider yourself too. You're not running a restaurant and have other things to do too.
I have thought that DH did not grasp the concept of Christmas or our anniversary this week. This morning, he said we "needed to talk". He told me he wanted to give me something for our anniversary and for Christmas, but "I don't have an account now". (Of course he does, just doesn't know how to access it). Asked if he could "borrow" several hundred dollars from me so he could give me cash to get whatever I wanted! Told him that would be fine - he could put the cash in the Christmas and Anniversary cards he has already bought. He said he would pay me back when he has the the money. I think I'll put some money in his cards - and see what he comes up with! Oh....yes, the reality of this!
divvi..thanks for your quick answer. A few weeks ago when I thought he was over the sleeping all the time is when the doctor had taken him off his meds. that he thought might help...well, it did for a couple of weeks and now back to the sleeping again. I know all these things probably are just part of it, but some days it just gets to us...probably part of it is the holidays.
Vickie: My dh wants to borrow money from me all the time. I tell him I will get him some money when we go to the bank and he forgets it by then. Tomorrow, we are going shopping because he wants to get me my Christmas gift.
My caregiver comes today and I get to go out by myself and I am going to look for some kind of meals I can Micro. Good idea.
JudithKB--something that helped me a lot when the agnosia hit my husband bigtime--I tried to think of him as being blind. Would I be upset or angry if he was blind and couldn't see? Of course not; well, agnosia is because of the brain, not the eyes, but it's the same, in effect. It took a lot of the frustration of dealing with that part of the disease away, for me.
Marilyn, thank you for that comparison. My DH has a terrible case of agnosia & it drives me crazy. I know his brain can’t process what he sees, but it’s frustrating (for me & him). Maybe if I use your suggestion & think of him as being blind (or his brain as being blind) it might not be so frustrating. Any trick to help me cope!
I think the comparison occurred to me because at the same time, my Dad was suffering from very poor vision due to macular degeneration. His struggle to locate objects looked very similar to my husband's, (i.e., reaching beyond the food or drink rather than where it actually was). Although the cause was different, I could see such similarities that it became clear to me that the way agnosia was affecting Steve was pretty much equivalent to blindness.
This topic sure is a much needed one for me. I am so angry, hurt, tired, and the list goes on of things that are going on with my dh at this time. He can hardly talk other than a few words,,,, yes, no,,, and things like that, he has no idea how to answer correctly, he does not even acknowledge that he has a right hand or leg, he doesn't remember how to turn his head to see things on the side, even when he looks at something he has no clue what it is, he is getting rebellious, and grabbing me when I am trying to do things to help him,,,,,, I could go on and on but we all know what I am saying. I am at my wits end....... it is the little things that are really driving me crazy right now. The not answering, the not understanding, the anger I see in his eyes, he slurps ALL of his food,,,,, drives me nuts..... JudithKB I do understand the thoughts that you have because I have them too. I am not proud of the thoughts I have been having lately. I think I would put my dh in a home if I had the money but I don't. I am not sure how much I can do. I do not know what possessed me to be so dumb but I bought a power recliner for him to help him get up easier. All you have to do is push the button.... No way can he remember to do this. He is fighting the chair to make it go down and it won't without pushing the button. I need to be slapped also so it will hurt enough to make me come out of the past where my dh was my dh. Thanks for listening all of you...... Joan, I sure would like to bite reality back....... REALLY HARD.....
I also like that analogy to blindness since my wife's agnosia continues to worsen more and more. Maybe if I think of her as being blind, when she gets up from the couch to get something for herself in the kitchen ... and asks if she can get something for me as well ... I'll more often say no and tell her to just get what she wants for herself. Currently, I too often foolishly do ask her to get me something as well ... a can of soda, an apple, etc. ... and then get frustrated when she can't find what I asked for, or forgets what I asked for, or brings me something I didn't ask for. I'm expecting her not only to see what I want, but also to remember what I want ... and I should know better than to expect either of those 2 things to happen much anymore! Yet another bite of reality.
It has been 3 1/2 years since we found out that Bob has EOAD. I read your blogs which has prepared me in some way. He is forgetting so much more and I am so sad to think that now we are entering those later stages ourselves. I found out today that my neighbor saw my DH walking on a main highway about 2 miles from our home. I have someone watching him 2-3 times a week but thinking I now need daily help. Of course, he denied it. I have project lifesaver ( in case he gets lost) but that won't help if he gets hurt! He doesn't see anything and I will point to the object and and tell him to stare at where I am pointing. Now I understand what's happening. I didn't know it had a name. It is so frustrating but I also like the concept of thinking of him as blind. Belinda
beachgirl: My dh does that "blind" thing also. I read on another site today, that EOAD people (my dh is EOAD) seem to have this problem earlier then the older people who get ALZ. They also have language problems earlier. My dh also has speaking problems that seem to get worse by the week. However my dh was dx 6 years ago and has all the problems in stage 5 and a couple of problems from state 6.
Blindness is a condition that we all can relate to more easily than agnosia. This is another example where caregivers so desperately need education. Why should we have to learn about symptoms like agnosia on our own? It sure would help if the doctors would explain about it and help caregivers cope!
Belinda...It is so hard to see our mates decline. They are like runaway trains. Nothing we can do except adapt the best we can to the changes. My dh doesn't have EOAD but I am noticing the "looking right through things." I have to tell him to look at me and then I will point to the object. Things won't get better. This is as good as it gets. Hang in there.
JudithKB--my DH has EOAD as well and he was exactly like you said--agnosia and language problems early on. I never knew that was a tendency with EOAD. DX 6 1/2 years ago, now stage 6.