I so rarely have the time to post here, but I read as often as I can. The loneliness of our situation is at times unbearable. Like many of you, I no longer have the marriage and sharing we once had. I am truely an AD widow and take care of my severely damaged loved one. We had no children, moved to a state with no family. I am on my own and the decisions I need to make are overwhelming. My husband the last few weeks has taken to staying in bed most of the day and night. Gets up to eat and returns to lie in bed. I need to find a NH in the next few months to get on a list, but dread looking by myself. Dr's suspect I will be able to keep him at home for 6-12 more months. I do get homecare while I work. I just started a new very pressure-filled job. No one to talk to about it. I worry about the future. I am only 52 and we spent every red cent on taking care of my spouse's health issues. I have zero savings and am just starting over. What will life be like if he is placed in a NH? I will need to be there frequently, maybe daily..to ensure his care from staff. Will I be able to keep my home? Will I care? I look at death for each of us as a release. Yes.. I am on anti-depressants and they do work. Otherwise I would have given up. Sorry for the ramble. I barely remember how to converse. Thanks for being here. I wish the best to all of you.
You can talk to us about the job, though I know it's hard to find time to connect. Oh, poor Patty - I know how you're feeling, life seems so empty sometimes...
Patty Please know that I also am working full time and need to desperately come to this site so I do it on Lunch or Breaktime. I don't have time to post a big message but like you said you come here as often as you can which is good. Yes at 52 you do have your life ahead of you and we all have made tough decisions without our spouse because that is what we find ourselves having to do. My drugs are working overtime also. Post when you can. We are always (God willing) here for you Jenene
Patty, not only do you have the pressures at home, but a new, highly stressful job! WOW! I am so fortunate that after all these years, my present job is wonderful! Being at work is my rest! I have many friends at work and can talk to them about my husband. There are several who have parents and in-laws with AD who understand some of the symptoms, decisions, etc. though not the spousal issues.
I have recently gotten the human resources department to find out how many employees are touched by AD, and it was so high, that they asked me to be on the planning committee to start lunch caregiver groups! We are starting with three in January! I'll find out then how many spouses we have. This will also be a respite for me.
Patty, just come here with questions, or just to vent. We are here to support each other and give out hugs! (((HUG)))
Patty, please feel like you can talk to us about anything and everything, not "just" AD. Lots of us work, or have worked (some of us are temporarily and unexpectedly unemployed and are going to have to look for work ... ack!) and understand starting new jobs and high-pressure positions. Some have already looked for nursing homes, maybe they can provide ideas on who could help you with your search. I have tips on what to look for, in my files, any time you want something like that.
We care. And I'm so very sorry about what you're going through, I really would like to help if I can...
As my DH has gotten worse...still not THAT bad as AD goes...his ability to carry on a conversation has diminished. This is probably what I miss most. Not just the higher level discussions, like when we would talk about things in Harvard Business Review. Even newspaper articles or such is mostly non-existent. My DH can use email better, so any family business or assignments he needs to be part of are conducted by email, the earlier in the day the better. By the time I get home he's already sundowning. I engage him in some conversation so he can 'stay in practice', but it's mostly mundane things like 'what did you do today?', knowing beforehand (like when my kids were in day care) what he most likely did. He has a daily task list he can still use. But then we are DONE with talking. This is probably the loneliest part of the disease so far. My best friend can't talk to me! Previously he would at least listen OK. But now he does not even listen, he just spaces off. So any illusion of conversation is non-existent. We also used to discuss future plans, like when and what to do at retirement. Of course he can no longer work and there is no future for us, not retirement for us, only the hope (by us both) that his care does not eat up all of the smallish amount we have put back for retirement. Sigh.
My DH does pretty well in social situations, but mostly because we socialize with good friends and family. I realize he doesn't really communicate, but instead, makes comments, but happily, our friends joke back with him. For us, however, he will go off on a tangent about who knows what, and will keep going and going til I want to scream. I usually do sudoko, or crosswords, while he's talking, because I really don't need to pay that much attention to what he's saying, and he doesn't really realize that I'm not paying attention. I can easily respond, I've heard it the first 5 times. With this financial collapse, I'd love to talk to him, but ... it's like talking to myself, and then he catches onto one thing I said and starts questioning me about it. But then he will swear i never told him something.... OHHH.
I agree with chris r. Talking to my husband is like talking to myself - sort of like thinking out loud. I hesitate to bring up certain subjects, because I know I'll have to explain many details to him repeatedly. I've become used to half-listening to him and have to remember to pay attention to other people who actually make sense when they speak.
I would estimate that 90% of the time I have no idea what my wife is talking about. Lots of vague talk with plenty of pronouns and the two words " this" and "that". I wish I knew what "this" or "that" meant. We are long past the "Charades" stage where she could utter the magic word that explained everything and tied it all together.
I can certainly relate to Evalena's comment about remembering to pay attention to other people who actually make sense when they speak. I'm so used to working with my wife that it takes some effort to talk on an adult level with my friends. And I know that the worst is yet to come.
Not 90% of the time but there are times I have no idea what my DH is talking about. He isn't making words up or mumbling but what he says sometimes just doesn't make sense. I just make appropiate noises. He can go on endlessly about sports but doesn't remember the team or the person....most times I can fill in the gaps I just don't try to have deep conversations with him anymore.
I think my husband is the twin of chris r's husband - same thing could have come out of my mouth, except mine is very loud and the more he goes, the louder he gets.
So hard to break myself of trying to initiate conversations. He just can't participate. Forget about asking for in put on anything. I'm lucky to get any answer to something as simple as, Want to eat?
But boy, I'd better be right there with an answer--- or ready to make a call if he wants something. Only willing to wait a little and woe be to me if I don't have the GoBus set up for Sunday morning to go to the store so he can have coffee and watch the people. He goes to bed at 6:30 p.m. Then it's me the TV and computer and we can't be loud.
I miss my little bitty telemarketing job because it did let me talk to people for a while each day. I'm really grateful for our in-home helpers, because they'll talk while they work.
This is really hard for someone oriented in communication. The library I ran was never this quiet.
Like Carosi, I forget and start initiating a conversation. I get caught almost every day with that. I'll begin a conversation, start to read a short article from the paper, anything to hear an adult voice. His comment is almost always--"oh, that's nice." It can be any topic--tell a joke--anything. He just doesn't get it.
It's lonely. And, I also have to remember to talk on an adult level when I'm around others. Fortunately, I am around others quite a bit and so that's not a huge problem.
He found puzzle book this morning where you match a pictue to a sillouet. (sp). We worked together on it for 10-15 minutes. It was fun. He had a good time. We used to do that kind of stuff all the time. I suggested we look for another one but he didn't want to. Dang! I was just getting into it....:)
Mawzy, I forget too. Something will come up and I'll find myself talking about it to him. And then I realize I shouldn't have done that. He doesn't have a clue as to what started me off, or why it interested me. It's lonely.
I call it a-lone-ly. I am alone. The other night we went out and as we stood in the driveway, we noticed the moon. I mentioned the moon looked like it was almost full and that the kids (at school) were all a little screwy. He commented back that the timing was about right and we got in the car and drove down the street. When I stopped at the end of the street, he looked out the window and said, "Look, I think the moon is about full." If we can't have a conversation about the status of the moon, how can I describe my hopes and fears to this man? It's so hurtful when I do because if it's about something important and meaningful, there is no recollection of the moment, but somehow he remembers the fact that we are out of mayonnaise. Intellectually, I know this is the monster knocking at my door. In my heart, I feel like my fears don't rank as high as mayonnaise. I try to be rationale about this, but it always feels like something is scratching away the pieces of my heart. I desperately want someone who cares about the things I do. We don't even have to agree, I'd be happy to be on opposite sides if he could at least comprehend that there are things more important than the amount of mayonnaise in our refrigerator.
My husband is virtually non verbal. He has two words "yeah" and an occasional "no" and what little voice he has is very course and gruff. There are times that I would give a million dollars just to hear the sound of his voice even if he was giving me the dickens for something or talking nonsense, but I know that would get old fast too, so we live with what we must. I had to take him to the ER last night. Another fall (which happens more and more often) and since he can't tell me where he is hurt I have to take him and have him checked out. While we were there a nurse was telling me about her mother who had had a stroke, she says only one word, the word "three". She says it over and over like she is having a conversation.
DH was telling me this evening how he had been so busy all week. He said every day he had been running this machine. I was clueless. I asked what machine. Big mstake. After him seraching for the right word--I tried to change the subject and he never did figure it out. I finally figured he was talking about the paper shredder. He does shred all the envelopes and papers with our name and any personal information. He only spends maybe 5 minutes every other day or so.
I felt so bad for him. He was struggling so hard to find the words. We sat there for over 4 hours and not another word was said. He does talk to the cat--he makes growly noises at him and pretends to purr or meow. He does say he really likes the cat.
I agree--I think I am a-lonely. We live with what we have. Sad, isn't it.
I'm becoming aware that some of the things that are driving me crazy these days are the things that I never got resolved before his dementia. Most of them are totally unimportant, except that they upset me then and they upset me now.
The fact that when he "helped me" with something he actually took it over. I was never the boss of anything we did together even when I knew what we were doing and he didn't. And that is one of the things that will never get resolved.
The whole taking things out of the order I put them in in the dishwasher, because his way is right and mine is wrong.
Etc., etc., etc.
I'm working on being kind and patient, calm and serene. <grin> Maybe I'll get there someday.
I agree with both of you! It WAS difficult....but after the last two days, I'm to the point that I wish he could still rearrange the dishes in the dishwasher because I didn't put them in the way he wanted. <grin> I'm afraid he's going downhill faster. Hopefully, he will level off again soon. I'm still counting on taking him on the cruise. I talk for both of us and I'm really tired of hearing myself! Even with my daughter and grandson living with me and helping me with him, I'm still lonely. They are of different generations and though we talk, it is mostly about my husband's actions and dinner. The discussions that my husband and I had, and our lives as they were before AD, are gone and I miss them (and him) so very much!
I guess i am on the other end of the spectrum here. i always startup conversations just to hear myself think outloud:) DH will look and listen but doesnt usually comprehend much maybe a couple or two words and try to make out what i am talking about-because he is very deaf now without his hearing aides. so i think alot of his nonverbal is not hearing actually. so if i get in his face and speak slowly he does mostly understand what i am saying-plus i keep it to a minumum of a yes or no answer and then he will inject whatever mumbo-jumbo aftr that. at this point i guess i am satisfied just to have the body present and some smiles during the day without the intellectual conversations -but it doesnt take the lonesomeness away -divvi
He still rearranges the dishes in the dishwasher. I go later and do it my way because I don't want to run the dishwasher every day. I hate that I have to make all the decisions, like when to get his haircut, what to do with our IRA's which are tanking, what to do for Thanksgiving. I just better not run out of milk,crackers or peanut butter. He is still functioning pretty well with my telling him when to brush his teeth, bathe, etc. It does get lonely. I really have no time to myself, except when I get my haircut or see the doctor.
maryd, I had to laugh when I read the fact that you better NEVER run out of milk,crackers or peanut butter.Those are the very same things that my Ad hubby will buy everytime he see's them.We now have 6 boxes of gram crackers and 4 boxes of Ritz.We live less than a mile from the store...Strange!
I ended up with 3 qu jars of mayonaise and about 7-8 tubes of toothpaste. Very strange, indeed. The other day I was making out a grocery list and he told me not to forget toothpaste. I just told him we had plenty and showed him. He was just stunned and asked how come i put in such a huge supply. I had to laugh. OMG. This can be so hysterical------
This solves the mystery of WHY we had to keep every empty box of laundry detergent. The keeping of the CHEER boxes was a problem long before I noticed memory issues. He insisted that he was going to use them to store his 'stuff' when he cleaned out his classroom before he retired from teaching.
It made a good argument until I noticed that he put only a couple of pencils in one and maybe a few small tools in another but never actually filled any of them. Even so, if he saw that I had one in the trash, he picked it right out.
Then he seemed to get stuck on the notion that I liked chilidogs and when he ordered anything from a fastfood place, he included 'my' chilidog.
'Repeated' things, seem to be another common element in this disease. Right now, he fills every 20 oz. coke bottle with water because he's discovered its a handy way to keep water on hand when he's out 'working'. Doesn't want one thrown away and our fridge is 'very well' supplied.
Conversation is the topic here though and as long as he's the converser and I'm the bobblehead, things are ok. Last night I forgot to bobble..when he insisted he had no more undershirts..the DRAWER where they ALWAYS have been kept was empty. I showed him that he DID have undershirts and the drawer they've always been kept was the middle one. See? For 30 years those shirts have been in that same drawer. Just when we think we're all 'accustomed' to things, a little thing like that can throw us off guard. I should have bobbled and moved the shirts to the drawer he wants them to be in now.
OH my, How about international coffee cans. We have about 50 in the garage right now, and I sneak them out into the garbage. If he sees one, he takes it, to put his stuff in. and you're right, he's done it for so long, I'm sure before Dx, but maybe around that time. they are all lined up on a shelf in the garage, empty. and he talks to the dog incessantly, Maybe it irks me because of what he says. Are you starving? he'll say to the dog, when there is food in the dog's plate, but he wants what we have. But I have to be so careful about what I respond, and I must make sure I'm "Bobbling" my head at the right time, even if I vehemently disagree. Lately, he's on a tare about his first wife. Stuff I know was not true but that's how he sees it now. He was always right (actually he was, but I heard this all already and just don't care) for Goodness sake , this happened more than 50 yrs ago, and your sons are 61 and 57 yrs old. Who cares!!!! Well, he does, and I try to change the subject, but it comes right back to that, or how great he did compared to his friends. Excuse me, That was more than 60 yrs ago, and they were still fighting the war. you were just lucky you were injured and came home so you could start working. But shame on me for saying that, so I don't dare. Meanwhile in this financial, people are losing their jobs including my son, but he doesn't know what my kids do for a living, and he did it all himself too. and better. We've been married for almost 32 years, and been together for 37 years, and I can't discuss how my kids are doing in this financial debacle, because he doesn't remember what they do. ARRGH. It's so A-lone-ly.
At out house, it's Pringles cans....both the short and long ones....all lined up to put nuts, screws and bolts in but they're all empty. And yes, this started before diagnosis. How would we know this is normal for an AD LO if it were not for this web site? Also, hoarding. He doesn't want to get rid of anything.
hummm...LOL. i have a plastics thing myself. cant seem to throw away those 'so practical and reuseable containers with lids you get with fast foods:) haha.. i hope AD isnt contagious..and i just bought 2 sets of more greenie boxes..yipes.:) divvi
Oh, my. Me too. My husband always knew how to do things better than the people who's job it was to do it. Especially me. Drove me nuts well before dementia.
Maybe that kind of arrogance is what predisposes people to these diseases? Maybe a really early signal that sooner or later they are going to get it? Maybe that is what stage 2 is all about?
As with others, I no longer can have meaningful conversations with my wife. She never initiates anything, and barely responds if I do. However, she carries on long conversations with a stuffed cat she likes (she is allergic to real cats), commenting on how much she loves the cat and wants to make sure it is happy. Right now she is holding it in her lap, rubbing the fur (it has almost real fur). I agree with Chris r, it is very A-Lone-ly.
Awwww Marsh, i know the feeling of seeing them relate to inanimate objects instead of us. be glad she has her kitty that gives her happiness and smiles. my DH has several lifesize statues around the house that he visits with the 'guys' everyday at 4pm :)))and makes the rounds and laughs and talks to them and thoroughly enjoys those 'conversations'-plus mine also talks to our chihuahuas and even they seem to know he has issues and just tolerate him too. what a surreal world living with AD. divvi
Starling I agree with your observations about arrogance and being able to do anything better than anyone else as being an early symptom of dementia. Looking back-which of course does no good-the symptoms were there. I had never even heard of AD then. FTD was a floral delivery service.
I am starting to get concerned<g>. I often think that I can do most things (not all) better than anyone else AND I have approximately 22 Folgers coffee cans (with lids), 32 planters peanuts 2lb containers and 5 5lb Atomic fireball containers. I've long had a fascination with multiples of the same geometric shapes. There is always some distant plan for each of the various containers, but they seldom make it to a priority one. The day to day, keep everybody alive and safe, seems to define those. This has been true long before dementia, brain atrophy and cancer visited us.
I threw out 25 emptyFolgers cans in June 2008 (I hadn't realized we had so many!) and have only saved 5 for storage use!<grin> I have one filled with ball point pens; the others are empty, but I just KNOW I'll need them for something if I should throw them out! I have saved two Pringles cans (they make good frames for homemade candles- however I haven't made candles in 20 years!). I think that we are all still products of our parents' generation where you didn't throw ANYTHING away - some even washed out plastic bread containers and and washed and re-used aluminum foil - during the depression. I, of course, have no memory of that depression, but their habits were passed down to us. If I don't clean out our storage area in the basement soon, I'll have to rent a storage room! But I promise I'm not compulsive about it! <grin>
A dear friend of mine's father had AD and he kept calling his son and telling him about this man that was hiding in his house, one day while his son was there, his father happened to walk by a mirror and started yelling about "there he is, and he is in my car when I go anywhere. He was seeing himself in the mirror and not recognizing himself. His son introduced them and for a long time he held unusual conversations with "his friend" It seems so sad
OMG--I had no idea this was part of AD. We have dozens of those foam plates that meat comes in. Empty pie pans, coffee cans, magazines, paper, etc. This has been going on for years--long before he was diagnosed.
He also 'hides' goodies (crackers, cookies, etc.) in his shop--his tool box. The kids have known for years that ye staches stuff in there and when they are over here, they go right for it.
My FIL also had AD and he never threw anything out. I always thought it was his generation. Maybe it was his AD too.
Cardboard boxes and the boxes everything in the world came in. My DH also has become obsessed with his first wife lately and hates her and has forbidden me to talk about her but he brings her up all the time. I just have started saying I don't know who you are talking about, I've never met this person. He also has thought since I met him that he knows better than anybody on the planet, everything. That should have been a big warning flag because I would like to have an opinion sometime. How can you have a conversation with someone just telling you how it is?
Jules, that's the problem - you can't have a logical conversation. Doesn't happen often with my husband, but when it does - I just go with the flow and agree with him or try to divert his attention.
OMG did I post about my husband talking about his x wife.... constantly. I'm getting sick of it. We have been together for 37 years, Who cares what happened before that! and the boxes. as welll as the Folgers cans and the international coffee cans. I admit, I once saved a folgers can for about 2 weeks. Then I realized I would soon have 2 so it went in the recycling. Somehow, it feels less like I'm thowing stuff out when it gets recycled (LOL)
I know it sounds strange but I wish my wife could sometimes ague with me, not that she ever would, so at least we would be talking about something. Her Alzheimers started with aphasia and she can no longer get any words out that make sense so doesn't try to say much of anything anymore and her understanding of anything said to her I think is almost completely gone since anything I say to her is met with a blank stare. I worry most about how she will ever be able to tell me or any doctor what she is feeling and how this will make things so much harder as she gets worse. I really do miss any little day to day chit chat about the simplist things. I agree that it is like being alone even when she is right there beside me. We taught school together for 25 years and have been married for 33 years and it is hard to not share with someone anymore.
I try to continue to have at least one "conversation" a day with my husband. I try to pick a time when he is most alert and I tell him about something happened during my day or something that is bothering me or even how I feel about the horrible thing that is happening in our lives. My family often looks at me strangely when I say I told Charlie this or that of I make a comment that I talked to Charlie about it. Of course I talked and hoped he listened. All I know is that it makes me feel better and I hope that some of what I say sinks in. I say "I love you" often and sometimes I get a "yeah" in return. His only word.
Thank God we can have conversations most of the time, even if he doesn't remember it later on. Best time for him is first thing in the morning before he gets out of bed. We have coffee in bed before we get up - and this is where our conversations most generally take place. Of course, later in the morning, he won't remember what we talked about - but it's nice while it's happening.
C I just read your comment -- PLEASE TELL me how you got your spouse to put on depends. My husband absolutely refuses and consequently I have a lot of jeans to wash or an odor problem
I feel like one of the many things that people can’t understand about this disease is how excruciatingly lonely it is to be in the house with someone you love, and not be able to talk to them. The long silences that rip at your heart. The trying to talk to them, even when you know they can’t respond like they used to. That sick feeling when you realize that you are only confusing them by talking to them.
We used to have long conversations in the car. It was easy to talk there. Now when we’re in the car it’s horribly silent. We can’t play the radio, because that bothers him. One day I was very stressed about the silence. For some reason I decided to just pretend that DH wasn’t in the car with me. Instantly I felt better--the silence was peaceful then, instead of just empty. I felt bad later for imagining that—but I plan to do it again.
A couple of weeks ago in the “Pickles” comic strip (this strip doesn’t include anything about dementia, but is just about older people) there was a dialogue that went like this:
Wife: …sigh. pause Wife: Are you going to just sit there? Wife: How about some witty banter? Husband: Witty banter? Wife: Yes, you know, clever back and forth conversation, like you see on tv. Husband: Ah…Okay, give me a moment…. pause Husband: I like cheese. Wife: Let’s see what’s on tv.
I didn’t know whether to laugh or cry when I read this comic strip. Something like this would be a big conversation for us on some days.