Today's Blog is about the loneliness that occurs when AD steals conversational ability from our spouses. I invite you to read it and post your opinions here.
Joan, today you have posted about the one thing which, probably above all others, has walloped my sense of well-being.
I always felt so jazzed when Jeff and I got a night alone to go out to dinner, because more than anything else about him I just loved talking with him. It's the biggest reason I married him--how we got on in conversation.
We have something along the lines of that elephant exchange daily. Much more than daily, except that I find I avoid trying to converse with him unless we really need to. The times conversation work best are when we're driving somewhere in the car. Being stuck there, with nothing but the world zipping by outside, he seems a little better able to follow my prattle...but it's somewhat one-sided...I'm just more or less using his presence as a sounding board because I so miss good equal-exchange conversation.
When I fantasize about having someone else in my life it's for conversation, mostly. I'd just like to go out to dinner and talk with someone who could really be on my wave-length.
I had not realized it at the time, but for a year before DH was diagnosed, I was answering for him because he took so long to respond that people were thinking he was ignoring them. He would always nod after I responded and then smile. He was diagnosed a year ago, and has gotten to where he can't barely talk at all. If, on occasion, he strings four words together that make sense, I fee like celebrating! This morning he tried four times to tell me something and couldn't get it out. When he does this, the word that finally emerges makes no sense. It is so frustrating for him, and I really feel badly for him. I'm afraid he's reaching a point soon that he will cease trying to talk.
His smiles reach his eyes, so he is still communicating that way!
the early years of our marriage were frought with communication breakdown. After a seperation and near divorce 10 years ago we finally learned to communicate. And I discovered he was a really neat person inside. Within 4 years that gift began to errode, thanks to AD. DAMN DISEASE!!!!!
One of the toughest things about this feature of the disease is that my husband doesn't really seem to grasp that my different way of relating to him is a direct function of how his personality has altered. I know he misses the level of affection and interest I showed back when it was a reciprocal, rewarded interaction, and he doesn't fully understand that I would have to pull magic personality bunnies out of a hat to keep being just the same person around him. A good relationship is a lovely symbiosis, and when one aspect stops playing its role, the other cannot be what it was either.
My husband loves to talk, but I've noticed that is happening less as time goes on. It's talking, but mostly the same things over and over, some of which is just plain not true. I have tried to tell him what he is saying, for example, that his three best friends all committed suicide, isn't right, but it doesn't matter, so I just let those things roll now. The conversation when we drive is - 'why are there so many trucks on the road, where are all these people going, why are they driving so fast' - you get the picture. The other day Hank said, "Are you alright?" when I sneezed and then he said he wondered since he'd never heard me sneeze before! Believe me, in 11 years I used a few boxes of Kleen-x! I just let things like that go. It's definitely different than before AD, but I try to more or less accept what is. Ever heard the saying, "If wishes were horses beggars would ride"? I think of myself as a 'benevelent despot' these days. I remember hearing that was the most efficient form of government and for me I think of myself that way. I rarely ask my DH what he would like to eat, do, wear, etc. since it's too hard for him to figure out. So I do all the chosing these days, though I try to keep in mind what I THINK is good for us both. Joan, I can't imagine dealing with AD and putting together this website. I can't deal with pressure and AD, so we've really simplified our lives.
I miss conversation with wife M a lot. Nowdays, I just tell her "do this," "do that," "swallow these pills." She can't make even the simplest decision. Her vocabulary has become quite small in the last several years. I started her in Depends two weeks ago OK.
If I say "Would you like some lunch?" She stares blankly not knowing what to say. So I say "Let's have lunch in the kitchen now."
Its as though the woman I married in 1966 died several years ago. What remains today is just her shadow. Its so sad, but what else can I do? Just getting her to obey simple instructions for her own good is all I have left.
Hi all - this is the saddest part of my life. DH's first symptom was aphasia - the inability to talk in complete sentences and now there's just a word here or there. Also can't write down what he wants or needs. I feel such a loss. But he's still inside there somewhere - now and then I see the smile in his eyes. Dilly
That is the worst part of ad, my husband don't talk and for the past three days he has been moving every thing he gets close to. He don't know who I am half the time and yells my name constantly. I miss our conversations for now there is noone to talk to. Things are really looking bad at our house, I'm beginning to get worried afraid I may have to place him in a nh.From day one I always believed I could take care of him,now I have my doubts. GOD BLESS
My wife and I have just gone through a tough couple of hours. This afternoon I took her with me to a board meeting (she has been to every one for the past 2 years). At the end of the meeting she walked out and wouldn't speak to me. I tried to have a discussion with her regarding future meetings giving her 3 options - I quit the board, I hire someone to be with her, or she goes with me to the meeting. We probaly went over this for 1/2 hour sitting in the car. She has no idea of the stress I was under. We then went out to a local restaurant for dinner but could not have our usual lively discussions due to AD. At restaurants used to be when we had our most enjoyable conversations, but now it is mainly just me sounding off on something with her making brief comments, often unrelated to what I am saying. By the time we got to the restaurant she had forgotten all about the discussion in the car. It seems most of our discussions now are her telling me that she does not want me to give up the charity work I do, but then objecting to any suggestions as to her care. She strongly resents the idea of a "baby sitter".
I guess one of the hardest things about this disease is that when we have a disagreement about anything (usually the need for a "baby sitter"), within 15-20 minutes she has completely forgotten about it and is back to being happy while I am still trying to deal with my emotions. (I'm sure my blood pressure is still up, while she is sitting in the chair next to me reading C.S Lewis's book "The Four Loves" - she won't remember anything about it)
This is a topic that hits home for me also. My wife no longer is able to converse other than one word answers that I have to pull from her. Emily I can relate so well to missing a mutual conversation exchange over a dinner. I agree a good relationship is a symbiosis and with me now only doing the talking the demeanor has changed. C I also feel like you in that conversation with my wife has come down to just getting her to obey simple instructions. As AD steals my spouse away from me at times I feel lost and ask myself when will I find my way back. Then I realize that as this AD progresses it will only get worse. God give me strength to keep going.
Life with my DH with limited conversation is so lonely. The thing that attracted me to him in the beginning was his lively outgoing personality, wit, and intellegence. That is pretty much gone. Now he has a memorized script of things he says. It is a pretty large script still but it's not really conversation. Yes, conversation is one of the biggest things I miss.
The communication is one of our major problems, also. Very often I can decipher what my wife is trying to say but other times it is impossible. She becomes very frustrated when this happens. Sometimes she has to take me to the room she is talking about and then have me figure out what she is trying to say.
Some of the communication problems are minor such as today when we taking a walk. She said," Look at the puppy", but look as hard as I could, all I saw was a bird. Then she said, "Look, there's another one" and, sure enough, there was another bird.
Other commucation problems are more serious. She is having problems with her back which causes pain in her hip. I try heat, then cold plus massage, but when I ask her how it feels now, where it hurts, she can't explain it to me. This causes problems when we take her to the doctor because neither of us can describe exactly what the problem is.
We get by with frequent touching. Much of the day, I'm either holding her hand or rubbbing her back. This gives us a sense of togetherness without the need for words.
Another frustration is that we can no longer work together. She has trouble understanding simple instructions such as to close a door, hold something for me, etc. A while back, I tried to have her help me put together a TV stand. All I needed was for someone to hold a piece while I tightened a screw, hand me a tool, etc. No such luck! The experiencce became so frustrating for both of us that I waited until my son could come over and help with the job.
So, I've lost my partner and my helpmate and am limited in my ability to take care of her needs because she can't express them to me.
Last night we went with my daughter to look at houses for sale. She's in the market for her first home and wants our help. There was a time when her dad would have asked questions, checked out the mechanics, been checking the basement and roof . Most of all he would have provided her solid judgment.Last night he couldn't follow any conversation. Just repeated the same question over and over. Kept picking up personal items in the homes and studying them as if he couldn't remember what they were. I looked up to see the realtor looking at him with such obvious discomfort on her face. She had a look of disgust almost. Things like this just break my heart and this morning just thinking about it brings tears to my eyes.I started limiting the content of my conversation ages ago.Now I just talk to fill up space.I can not imagine years of this.
Baltobob, my husband is at the same stage your wife is in that he can not understand even one simple direction any more, nor can he describe his pain. Like you, we do a lot of hand holding and hugging, smiles and saying "I love you" but it is not the same as having the conversations. I miss that so much, but I'm concerned about his health as well.
I can echo everyone's words here. No conversation apart from the odd question or comment on something my husband has seen on TV. Most of the time it is so confused I have trouble figuring out what he is trying to tell me. When we have company it's as though he draws on the few stories he has been able to keep in his memory and will repeat them each time. As someone else has said, having a meaningful conversation is out of the question. He cannot concentrate on what is being said as he is focusing so much on what he wants to say next. He will often interrupt as if out of fear that he will lose his train of thought. His sister did not speak at all for well over a year before her death and it seems he may be following the same path. It is a very lonely existence.
My DH tries so hard to carry on a conversation. It is more frustrating for me than him. He knows what he talking about and I have to try to figure it out and follow where it is going. He will suddenly say "do you like what I did today"? He knows what he did I have to guess because if I ask what he did, he has to show me because he can't tell me and he feels I should know. His children are all out of state and they don't call as often anymore as they find it very difficult to talk to him. This disease robs everyone of so much
It simply amazes me when I read all these topics of discussion how simular this AD is ( we are in the same faze with the conversational confusion )....... And how we all came from different backgrounds.. different lifestyles.. different regions of the country and how simular this dreaded damn desease is..... Bless you all my brothers and sisters.... I feel a closeness on this site that can,t be understood unless your an AD caregiver......... Dan
It is the transition from being a partner to being a dependent that gets me. I have guardianship of her, but I didn't want that to be of her soul as well.
My DH cannot follw any conversation, but in addition, he can't follow the news, or a movie, or any tv drama. Nowadays we watch mostly nature films, or travelogs, with no plot. Or else I spend most of my time explaining what's happening, and I don't know either, so I'm guessing, because I've been explaining it, and missed the gist. I keep forgetting that he can't follow a conversation, so I tell him things then kick myself because I keeps asking me about what I just said, be it taxes, or investments or the grandkids. from minute to minute he looses the thread of the conversation. But sometimes he remembers stuff you'd rather he didn't
I fully understand the kicking yourself bit. I'll make a comment and then just want to kick myself over it. My husband can still follow conversations, and occasionally sees something on TV that he wants more information on. His problem is that he has stopped wearing his hearing aids and frankly he can't hear the TV set. But he keeps telling me he isn't deaf. Actually, yes he is. Anyone who needs two hearing aids is basically deaf without them.
I have mastered the nebulous "h-m-m-m-m" to answer my husband's questions which I cannot understand. I use different inflections that appear to match the tone of his questions and I lift my eyebrows, etc. But the thing that drives me berserk is when he asks, "Where is what's his name?" because I have no idea who he is talking about and we have been alone all day.
This is my first time on the blog but I have often read the many comments and agreed with 99% of them. My husband, 68 y.o., has AD. I am his caregiver and am also employed outside the home full-time. The disappearance of conversation is one of the major things that I miss about AD. I agree with C that I find myself just telling him what to do rather than giving alternatives, discussing the why's and wherefore's, or even discussing the situation at all. This means that I must make all the decisions. There are times I would give my heart and soul to simply sit down with a male friend and have a good conversation over a cup of coffee, but that is impossible. I would not want anyone to get the wrong impression. That would hurt my DH and I would not do that for the world. Take care!
I just noticed under the Proclamation to the President thread 2 days ago that Thenneck asked if any of us could remember our last meaningful conversation with our LO. Does anyone care to comment on that one? It has been at least 8 years since I've had an adult conversation with my DH.
My wife is stage 5+ (age 57). Last adult conversation was about 4-5 years ago. The end of adult discourse coincided with the end of our sex life, as it should. I'm now taking care of what I consider to be my "retarded sister". I love her as I would my sister and will do anything to keep her happy and healthy - it's far easier to keep her healthy than happy.
Okay eveyone I must get this off my chest. You all talk about no conversations or at best a few I love you and hand holding. I am (soon to be not)employed full time and my DH is in a NH. Friday I was given the choice of a severence package or face termination due to the economic times. I so wanted to discuss this with my husband but found myself not saying a word about it. There would have been no comforting words, no OK honey lets sit down and talk this thing through we can figure this out together. I too miss the conversations over a dinner together in a resturant. I can't talk to co-workers and tell them what is happening. I was told by my employer since I am 61 we will have a retirement party the day before Thanksgiving so as not to worry my co-workers since I know they will or will not be offered the same severence deal. I want comforted that is what spouses do in these situations it is togetherness and reassurances. I can't tell him because of his NH bill that I have to sell his beloved pickup truck and his BMW motorcycle. I hung a model of his motorcycle on his wall at the facility and he tells everyone I have one just like that at home. There are just a few things that he says repeatedly and it breaks my heart to not be able to tell him these things have to go.
My heart is heavy for all of you whose LO's are unable to converse. When hubby and I were first together (35 years ago), we started having coffee every morning, in bed, and talking - for about an hour before getting up and ready for the day. We have continued to do this and it's wonderful to start the day this way. He will actually go get the coffee and bring it upstairs for us. He had lost some ability to express himself but has regained that since cutting back on the aricept and namenda.
Jenene56 - I feel for your heartache. That is so terrible. I wouldn't want a returement party that was forced on me. I have to be careful what I tell my husband also. I try not to tell him anything negative because he worries about it over and over and really doesn't even understand what he is worrying about. There are many things I wish I could discuss with him but it would be of no use and only make things worse. The children have their own families and worries especially during this difficult economic time.
I would try to get another job as soon as possible because you are still young enough to do so. You may be surprised how many employeers like to have older employees. I don't know what your skills are but there are programs available to update you for a new job.
Good luck to you and this is a good place to vent.
Its been a very long time on this end as well. I really cant remember the last solid conversation but i do remember the last intimate romantic evening, 12/99. las vegas. its all been downhill since 2004 at a faster clip. Seems like a lifetime ago. i guess it was. divvi
bluedaze I try not to think about the holidays because this will be the first ones without him home. Just today my DH is now asking about Christmas. I want to be home by then. I had the same thing with Thanksgiving and over and over. My depression medication is getting a work out but there are just so much chemicals can do. I really need this website and it is one thing that keeps me going. Knowing I am not alone with this horrible AD is a great comfort and all who post here. You are all very special to me.
Jenene, is it impossible to bring him home for xmas now? maybe for just a get together with immediate family or friends.. or if hes too much maybe hire an aide to come for the hrs he is there home? i do realize sometimes its too confusing to try to get them out of th facility. divvi
divvi He still doesn't believe that there is anything wrong with him. The dr and I have discussed bringing him home for a day in the spring but since he had not accepted his disease or why he is in a facility we think it is too soon and that it will depress him too much to be brought back to the NH after being at home for a day. We are just now taking him outside for walks around the grounds and he admits his feet keep arguing with him to run and run fast but he said he would not do that to me. He would not run from me but the overwhelming thought is there. I know it is a matter of time and he won't be able to stop his feet or win the argument with his feet. He is a child and you know that children will say or do anything to get their own way not knowing the consequences of his actions because he can't think things through.
I am sorry Janene, maybe later then if he settles in the facility and becomes more complacent then you can try for a day at some point. you wouldnt want to risk him fleeing your home. i know how lonely you feel, but we have to keep in mind whats best for them first since like you say he isnt aware of consequences. hugs, divvi
If I had but one with(with the exception of a complete cure) I would wish that my husband could communicate again. We were both talkers, I think that was part of our attraction to each other. We talked about anything and everything. Some of our best conversations were in the car on long trips but I really loved our weekends where he would get up early, make the coffee and bring some back to bed and then we would lay there and plan our day. We used to live next door to my mother and we often spent summer evenings sitting on the porch talking until it was cool enough to sleep. My mother would say that even though she could not tell what we were saying that the sound of our voices lulled her to sleep. I would give about anything for just one more conversation with him.
Oh, Jenene, I'm so sorry ... being laid off is upsetting enough at any time, but now ...!
You should be able to get unemployment. Talk with the foundation's HR department. At least here in California, if you "retire" because you're about to be terminated, that counts as being terminated for unemployment insurance purposes.
Also, see if the foundation has any out-placement programs. You may be able to get help preparing a resume, practicing for interviews, maybe they even "know people who know people" and can help you look.
Did you interface with any of the researchers at other organizations, or anyone at the other volunteer groups? Maybe they can help you with your job hunt.
lmohr is right, many places are looking for more experienced employees.
I, too, get hungry for conversation. DH is with me almost always and does not contribute to a conversation or if he does, it is not relevant to the topic. If I am on the phone, he stays near to hear what I am saying. Last night while watching TV, I turned to say something about the show and he was asleep. It is not his fault and I love him dearly, but I long for adult conversation.
<<<Echo>>> <<<Echo>>> I can certainly add my echo to this topic. DH can speak fairly well. Following a coversation is near impossible but for a minute or two. I long to get a good, intellectual response that shows he really understands the gravity of anything important in life.
I am getting to the point I don't even try to start a conversation with my DH. Two minutes after I have told him something he has it mixed up or while I am speaking I can tell he isn't listening. There is a look in his eyes like no one is home! Yesterday he asked me at least 6 times what time I would be leaving this morning, each time I told him and there is no way you can give the time more than one way. This morning he asked twice more.
I am going to my club meeting in the morning for 3 hours and am going to wait until tomorrow to tell him. Going to leave him home alone and check on him by phone. He has been staying on his own some lately, and doing ok.
I'm wish New Realm--DH can talk. He repeats himself constantly. Asks the same question over and over again. But he really cana'ta follow the news or a movie. He asked me this morning if we've voted yet. We voted Absentee ballot 2 weeks before the election. Then he wants to know if we've elected a new president yet? Says he never heard of Barack Obama or John McCain. I gave up on the conversation and got busy.
I miss the conversation so much. I'd really like a big bear hug and some really warm sweet words, too. I get lots of hugs from friends and relatives, but they're not the same.
Janene--I'm so sorry about your job loss. It just makes a hard situation that much harder.
Thank you all for your encouraging hugs and suggestions. I know that I will be fine once the shock wears off. Yes Sunshyne I will be able to get unemployment and that should put me under the Medicaid limit and that will be a worry off my shoulders for a while. I made a list of pros and cons about this pro is that I don't have to tell my DH and the biggest con is I don't have this life altering situation to discuss with him, his support and comfort he used to give. Mawsy my DH wants to know who I voted for over and over I guess it wouldn't hurt to tell him a lie and tell him I voted for who he did. Maybe the question will stop and maybe not. Other questions How is the car running? Did you mow the lawn? All the man thinking questions but the one that throws me for a loop. The man you have living with you now does he help you? I have no man but him but he keeps asking.
Jenene, may God give you extra strength that you will need to cope during these next few months! Having a spouse with AD is the most difficult thing to go through, and to have this happen! I am here with my hugs and support!
there are no conversations in our home. unless company comes over,which is extremely rare. my dh will only answer if i ask,sometimes several times,yes or no, and he gets them mixed up. sometimes he will say the opposite of what he means. once in a great while he may speak a complete sentence. when our children and grandchildren are here,i talk to them. but mostly. i just ask him yes or no questions. is he hungry,thirsty,cold,etc. jav
Thinking of you, Jenene. I so relate to the profound feelings of loss when something happens in our lives that we would normally share with our spouse. When they can no longer really share with us, feel for us, or even offer us meaningful feedback it almost leaves a feeling of having been abandoned. Only they (spouse) are still physically there with us.
Our situation is a little different. My husband had always been very quiet - almost to the point of being withdrawn. Since AD he is jolly, outgoing talks all the time, loves to debate and seems like he wants to argue if he can. I keep him away from social situations as he takes over and escalates and I never know what is going to come out of his mouth - cussing, which is new. Doesn't go over well in the church group. But he talks whenever anyone will listen to him, loud, demanding, wants to and does tell people what they should do on the street - how to park, etc.He tells me the same thing over and over. I used to try to be polite and look at him and act like I was listening and give comments back, but he either doesn't pay attention or jumps to conclusions and gets angry very easily. So now, I just continue reading my book, feeling rude, but it wears me out and he doesn't seem to notice anyhow or remember. Yes, there are words coming out of his mouth, not connected to reality and not really connecting with anyone else. Just wants someone to listen and listen and listen. I know this sound so mean on my part, but I do the best I can. I know he could benefit from being around people more, but he is a big man and he takes over whatever setting he is in, and escalates. Sometimes I can't get him to calm down and I have been afraid that he might get in a real fight so it is just easier to keep him in situations where I think we will have success.
dagma3-you are using the same words I did-Escalating. I could sense what was coming like a steam locomotive rushing at me. Nothing I could do would derail the situation. Very scary!
My DH has changed so much..most of the time now, he does not enter in the conversation with others, I don't think he tracks the conversation. My daughter (who will not accept he has AD) tells me it is my fault, that I overshadow him. That hurt for awhile but now I just let those comments slide off my back. When he does enter a conversation, it usually is stories from the past. The only exception is sports, he loves his sports and seems to still be able to track the current stats. For us, he can go hours without talking to me, I try to enter into conversations but he struggles with following. I do miss those talks we used to enjoy.