It's 3:30 in the morning and I have finally just given up trying to go back into bed. Have to get up in a hour anyway for work It's been one of those nights. DH can't settle down. Keeps wanting to take his Depends off but not a good idea is he is pretty much fully incontinent. Just came around the corner with my jeans half on, as he can't pull my smaller size on. Starting to think I am the one losing my mind. I know I am losing my patience. Any ideas on how not to lose both?
It always amazes me how we spouses here seem to go through the same things at the same time. I lost my patience BIG TIME last night, to the point that I was yelling at Sid. It got so bad that I vowed to myself to try to figure a way to dig up more patience somewhere. EVERY SINGLE NIGHT WITHOUT FAIL, I get up from the couch at 11 PM ( sometimes earlier )to shut down my computer and go to bed with my book. EVERY SINGLE NIGHT WITHOUT FAIL, he says to me - "Where are you going? Aren't you going to watch the news?" And EVERY SINGLE NIGHT WITHOUT FAIL, I say - "I'm going to shut the computer down and go to bed with my book. I never stay up to watch the news." Last night, I went nuts - yelling at him to stop asking; that I couldn't stand it anymore. First he got upset; then he got mad; then he got sullen. He told me that from now on he'll just not talk. I apologized. He didn't believe me. He went to bed angry. I knew he would forget the whole thing by morning, which he did, but I still need to find that patience to keep from losing my mind. Exactly as you said, dog.
I'm going to try the "turn around and take deep breaths before answering" tactic. I don't know what else to do. So if anyone has any ideas to help dog and me keep our sanity and patience, let's hear them.
Joan--you said EVERY SINGLE NIGHT WITHOUT FAIL 3 times. Since you obviously know this will happen EVERY SINGE NIGHT why aren't you taking ownership of it? At 11pm tell Sid "I'm going to turn off my computer and take my book to bed. Enjoy the news." ? He is informed and you're not bugged by the repetitive reaction caused by his Alz.
As to dog, when my DH has gone on an alnighter (only a couple times so far) we've adjusted meds, for that time. Not a full out everyday adjustment, but rather to quell the aggitation so he can get to sleep. In our case sleep meds don't work properly but an Ativan will calm his running mind. He still only sleeps in hunks but that's better than the up and down every few minutes routine.
Joan--In his way, I think Sid is trying to request that you watch the news with him. If so, no wonder he reacted by being upset and angry to your response. How about a change in routine? Shutting down the computer earlier, getting into bed with Sid and your book before the news, watching (or pretending to watch while you read) the news with him. You know, the "go where he is" routine.
I think the issue is that we are emotionally connected to the situation. Outsiders can come in to you home and things are different. They do not have that attachment, they can see things differently. We are being ruled by our emotions to the situation. I think we will find more patience in the Emotional Divorce we talk about but are slow in implementing.
Joan--The "clingy" stopped irritating me when I realized Steve was scared. I know that later on when he's not here, I will wish that my clingy guy was still around.
I think that basically my DH is scared, lost, or whatever. I do lose patience and feel like a dog later, but I try really hard to take that big deep breath, think "he probably is afraid of what is happening in his mind and/or his surroundings," and go on from there. Needless to say, I don't always succeed!
Only the mother teresa types succeed at always being patient and they are very rare.
The rest of us all go through the same kind of experiences of losing patience and snapping. Many don't want to admit that; but, they get comfort when they read about those of us admitting it. I've yelled so hard my throat hurt. Not into her face but in the house. I'm very hard on myself but in this I'm not because I've stepped back after the first volcanoes went off and realized the truth.
We are under tremendous pressure and that is just a fact. And we have powerful emotional things happening to us as human beings seeing what is happening to our spouse and our lives (and our finances). There have to be releases of as many kinds as possible to help us keep going.
I always apologize, explain that this is very hard, explain that she can rely on me to watch over her, and tell her I am going to get frustrated again because it's very hard to deal with. Which it is.
She trusts me and she's right to do so. I know this doesn't work for women as well where the male may be normally the head of the house (or whatever phrase best suits). I hear that men are actually afraid inside and I think if I had AD I would certainly be angry and afraid because I couldn't 'handle' things the way I used to and I would perceive that as a threat deep inside (no thinking involved).
My belief is that somewhere women have to take the upper hand in running things. That WILL come somewhere and the sooner it's possible that both parties have some grasp of that the better.
We can't help the emotions we honestly feel; but, they can make things much harder in a situation of great stress and change where that can't be avoided and will definitely get worse. Women somewhere must start becoming comfortable with taking over making all the decisions. I think early to late mid AD this is one of the great stressors in many of the situations (not all but many) and is an additional burden on our female caregivers.
In that same idea - I have to take on the housekeeping. Not just as a job but as a role. The plants, and pets, and the cleanliness, all our nutrition, and once a year things, and on and on are one of my role reversal burdens. It's very frustrating how much there is to do and learn. But here also when I sat back and realized the state of the house, what we eat, and how 'nice' it is are all now my responsibility - I started getting more comfortable with what I will and won't do, how often, and what I will live with.
That doesn't take all the stress away - but once I got comfortable with my new roles it took some away.
So much of this sounds like my life. I have had DH try to wear my clothes, pants, sweaters. Of course, they do not fit. Lately, because he cannot remember where anything is or how to do things he has always done, he gets very frustrated and needs me to be there and fix it immediately to help him. But, he also gets upset when I do it. Yesterday, I felt really sick, dizzy and vomiting, headache. No reaction from him at all. I told him I got sick, he did not notice. He did remind me we needed milk. So, off I go to get milk. No matter what, I have to be in charge of everything. Now I have to be in charge of auto maintenance, taxes, home maintenance, getting new furnace and air conditioner.It is so very stressful.I sometimes wonder if I will make it. I get so tired of being in charge of everything.
Losing my patience is my sign that I'm trying to do too much. So then I have to cut back, eliminate, hire someone (if I can) to help out, or absent myself in order to regain my equilibrium. This is a long haul, and I have to pace myself.
dog, must be something in the atmosphere...I wrote the topic "I can't stand it anymore" last night. I lost my patience and went on a rant about how he always has to go out, it's all about him and doesn't he understand how difficult it is to meet all his needs, care for me and the house, bills, etc. And when the time comes (I pray it's IF the time comes) and he's in a facility no one will take him on trips to nowhere and he won't get the same loving care. Of course it doesn't sink in but it did allow me to get the frustration out. You're not alone.
Most nights my DH sleeps but we do have occasions that he is restless. Last week was one of those times. Starting at 1 o'clock and lasting until 5:30. He told me he had to go to the bathroom so at 5 he is sitting on the commode and I am fussing. I tell him I have to have sleep or I cannot take care of him. That he needs to help me because I don't want to put him in a nursing home. All of a sudden his mind is clear as a bell. He tells me he is not going to any NH and he should have left my ass a long time ago. You took my money, you took my car, you took my driver's license and take down that sign saying please turn off the water, I am tired of looking at it. He goes on to say he and the man (in the mirror) had talked about it. This from a mild man who never curses and there were several damns used in the conversation. He also said he was leaving and I told him if he would wait until later I would pack his bag. I got clean depends on him and put him back to bed and he slept until 10. Of course, he remembered none of this later. We all know they can't reason and yet we find ourselves trying to make them understand . Ican smile about it now but at the time I was really upset. Patience....what is that????/
All of this sounds so familiar, especially Bama's experience. So far, though, I've been able to withstand the constant repetitive questions. Oh, I may get angry when he asks me questions while I'm watching an especially enjoyable TV program and it's about 10 minutes from the end, but for the most part, I've been able to answer his questions without getting too upset. It probably will get worse and I don't know how I'll act then, but the questions aren't a problem for my patience yet. The thing that's most upsetting to me is when the meds need to be changed and he gets into the "angry at me" mode and starts acting like Bama's husband. It scares me to death and I really don't know how to deter him from the angry outbursts other than take a big gulp, sit down, let him rant, or walk away. The hurt is still there, though. Because I've really ALWAYS taken care of him, through more then 50 years of married life, to hear him say those horrible things to me==the hurt is indescribable. But, when it's over, and it's the next day, and he's forgotten all about it and is so different, I realize he just can't help it, no matter what I say or do.
Bev, DH is really not violent. He has been getting a little more angry lately. Even in the early stages when he accused me of playing around with some kid across the street that we did not know he did not threaten me in any way. Of course, he still thinks I have boyfriends because he told the sitter that I have several boyfriends and he does not like me leaving home. We have been married 53 years and I know how much it hurts when they say horrible things. The worst thing DH ever said to me when I did something he did not like would be a GRACE and I knew I had displeased him. So when he started with the unfaithful talk and it was the first symptom he had I was devastated and did a lot of yelling and crying. We must keep our sense of humor or we will not survive.
Wow! this discussion is great. I have a few things that I do to try to have patience but I am not perfect and they don't always work. Depending on what the situation is counting to 10 doesn't work anymore so I do a lot of praying and being emotionally disconnected from what is going on is probably the one that works the best. It doesn't always work though. The worst thing I can do is have what I call the "me blues" where I think what about me, who is going to take care of me, when am I going to get some attention. That is an instant no no. I gues what I am going to have to resign myself to is that I am going to have to be put on the back burner until and for however long it takes. Yes, I do sometimes go out with a girlfriend but that is fast becoming not good enough. Bama, I think having a sense of humor is good because the things that are happening are going to happen no matter what so we might as well have a sense of humor about it. The way I look at things has a adverse affect on my DH so I need to keep it together even if I don't feel kept together so that my DH stays calm. I try to wait until I am by myself to fall apart(try being the operative word).
I spent over two hours making some vegetable beef soup this afternoon. When we were eating it, he asked where it had come from. He was here the whole time I was cooking.
Well Carosi, I tried to take your advice tonight. I wasn't fast enough. It was only 7 o'clock, and I wanted to take a shower. When I got up from the couch, I was going to tell Sid what I was going to do, so he wouldn't ask. All I did was move my tush an inch. Hadn't even started to get up, and he immediately said, "Where are you going?" If he wasn't so lazy, and never moved out of his recliner except under protest, I would guess this would be the beginning of shadowing. I honestly don't think he will ever physically shadow me because, as I said, he will never voluntarily get out of that chair except to go to the bathroom.
I'll try again at 11 o'clock when it is bedtime. I will make sure I don't move my tush at all, and I'll announce that I am going to bed. Then I'll get up.
joan, just when you want to try a new approach, it gets knocked down. I just read your blog & I know exactly what you're going through, but in a different way. When my DH is ready to go to bed he EXPECTS me to go too. Most of the time I'm so exhausted that I am ready to go, but on occasion I don't want to & he gets very beligerent. I tell him he can go by himself & that I will be there in a few minutes, but he doesn't want to hear that. Right now he is sitting on the couch giving me evil looks because I won't go to bed right now. I wish he would go to bed so I could have a few minutes to myself.
Wow! Lots of posts here. Maybe the time change caused us all to hit the wall on this in the last week. I made in thru the workday in spite of the 2-3 hrs of sleep! My crazy, stressful workday day kept me more awake than coffee ever would. That's a good thing!
Hoping, praying (and crossing my fingers) that it's a better night! And that's for all of us!
I do know what you mean, Joan. I get a lot of 'verbal' shadowing. "Who was that on the phone?'" "Where'd you go?" (to the kitchen..bathroom...)"Don't give him a treat." (he already did--sometime) What's that?"-mail. on and on.
My husband follows me around so much that I actually put a chair in our master bathroom for him to sit in while I'm in there. At least when I'm putting on makeup, he is sitting rather than standing over me.
Elaine--I have "faked my husband out" by going to bed with him, lying there until he falls asleep, and then getting up (like you would with a child). Fortunately, his medications allow him to fall asleep quickly.
Joan--at the end of your blog yo said youy needed to look for your kindness and patince. You knew it was around there somewhere. A mental image immediately burst into view of you sitting, sewing them on yourself, like Wendy sewed on Peter's shadow. Use sturdy thread.
Great image of Wendy and Peter Pan. Success tonight. I didn't move, and told him I was going to bed and not watching the news. Then I got up. Not a peep out of him. YAY! Another lesson learned.
this thread brings back memories for me too some not too pleasant either.. ha.. i also found it easier to just put a chair in the bathroom where i got dressed in the morning so DH could sit very close and observe. as long as i was within eye sight things went well. it got so bad if he wasnt within arms length of me he would become a 'peeper' and watch me from behind a wall or door with one eye.- spying on me. very spooky. he even would use binoculars to watch me from across the room.. grin.. and it lasted years! funny how you grow tolerant of it all after the initial shocks. it does help if you keep reminding yourself that they are afraid and you are their security blanket. how desperate they must be to become so clingy. its a stressful time for the caregiver but like all things AD we grow accustomed to the new challenges. divvi
Marilyn, I've done the same with my dh. He's usually asleep in minutes and I can quietly leave. My problem is not getting him in bed, but getting him out in the morning. Some mornings he just will not get up (and the day care van usually comes around 9:30. I start trying to get him out of bed before 8. (And he'a always asleep by 8 pm). He holds himself rigid and will not respond when I try to take his hand. I've tried bribery (grapes), putting out his clothes and talking about each item as I do so, and promise of good things to eat or do. What can you do if he won't get up? There have been days when I've had to call off the van and take him in myself. I've learned not to make ANY morning appointments on days when he doesn't go to day care. Any ideas?
Jeanette, my wife often refuses to get up in the morning, particularly when I am in a hurry. At that point I just pull all the covers off of her and walk away. We keep our bedroom a bit on the cool side, but she does not try to pull the covers back up. I do other things such as finish dressing, start the coffee, etc. When I return to her after about 5 minutes she has forgotten that she refused to get up and usually gets up willingly. If she still refuses I can try to lift her up, but this makes her scream so loud I'm afraid she will wake the neighbors (we live in an Inn). I haven't found that bribery works for anything.
Marilyn, my DH who NEVER got up for any of the middle of the night feedings for our 4 kids, slept through all the crying, dogs barking etc. has now become a light sleeper. I have tried to get up after he goes to sleep only to have him find me a few minutes later with that evil look on his face (you all know "the look") & ask when I'm coming to bed.
We ALL have tons of patience. But we ALL 'lose it' at times. We ALL know how we should respond. But we ALL blow it at times. We ALL try our best to deal with our 'new normal' each day as best we can. And we ALL do a pretty damn good job most of the time. But retaining our sanity while trying not to rob our spouses of their dignity ... and their 'selves' ... is probably the hardest job we've ALL ever had to do. It certainly is for me. But when all is said and done, we are ALL imperfect human beings and all we can do is try our best to do our best each and every day ... all the while knowing that no matter how hard we try to do right, no matter ho hard we try to remain understanding, we are ALL gonna lose our patience at times. Because we're only human.
Divi, I don't think anybody has the stories that you do. I laughed when I pictured your DH with the binoculars. I still remember him talking to the statues. Sad, but still funny.They do get like our children, don't they?
Our conversation over a glass of wine on our porch late afternoon: I had been to a caregivers fun day out, gotten 2 massages, manicare, pedicure, etc., and felt really good!
THE EYES HAVE IT!
DH: You have such beautiful eyes. Me: Thank you. DH: Did you always have those eyes? Me: Yes I've always had them. DH: Did you get them at your party today? Me: No, they have always been mine. DH: Who's standing in the backyard? Me: Where? DH: In the corner. (We have a statute he was looking at). Me: That's the nice statute you got for that corner. DH: It has pretty eyes. Me: If you think so. DH: I don't have pretty eyes Me: Yes you do, I love your eyes. DH: They don't see so good anymore. Me: That happens as we grow older. DH: I don't get older, I get more mature! And as you get more mature you don't have pretty eyes. Me: Well, I love your eyes. DH: Why are we talking about eyes?
I started to say - because you brought it up. But for once, I dropped it and just said......What do you want to talk about? He replied......we could talk about eyes!
vickie its a fascinating conversation.. grin. i am glad it was with wine.:) from your pic your DH is right for a change- your eyes are lovely!.. letting him have the last word is always good..
carolyn, yes some things our spouses do along the way are very endearing. quite like little children, sometimes in a good way sometimes not! i think vickies DH isnt far off from talking to her backyard statue too.
Elaine--My husband was always a light sleeper too, when he was well. If I just turned over during the night he would ask if I was ok. Now he sleeps much more soundly, I think in part due to the disease, in part, the meds he's on. At one point he started getting up during the night and I put him on 3mg of Melatonin (OTC) after checking with his doctor. It made a nice difference, and the doctor said it has been studied in dementia patients and I could give him up to 9mg a night if I need to (haven't needed to yet). You might consider that.
Jeanette--The problem with getting up in the morning was also stressful here when the daycare van was picking my DH up. Then I switched him to another center where I had to provide transportation, and even with the extra driving, it was better. We weren't on a schedule, we could both get up when we wanted and leisurely get dressed. All in all, it was a big improvement. In some (probably most) patients, the progression of the disease causes increased sleepiness, so I think you are fighting a losing battle trying to get him up when he doesn't want to.
P. S. Divvi--I got a chuckle over the binoculars--very resourceful. My husband doesn't do that, but sometimes he does creep up so quietly that I am startled. I am finding that I like having the chair in the bathroom, it is another place to put things when DH's bottom isn't parked there.
Marilynn, I know you're right but I hate driving. I do take him in on Wednesay mornings because I swim first (while he is still sleeping). You're right about the stress but I do love the moment when he gets on that van.
I also found that the van ride itself was problematic and it started the day off on the wrong foot; sometimes things went downhill from there. When I did the transportation myself if made for a more successful day overall because he started in a more neutral frame of mind. Those two days a week I just stayed in the area where the daycare was instead of coming back home (he only attended for 3-4 hours). It still gave me a break and the opportunity to meet friends for lunch, do errands, get the car worked on, etc.
I love the feeling of freedom when DH gets on the day care bus and I know I have most of the day to myself, he goes two days a week, and it is my life saver.
Sylvia, I know what you mean about feeling freedom. Every Mon, Wed, and Fri I take my wife to day care from 9-2. This gives me plenty of time to exercise, shop, get a haircut, etc. I agree, it is a life saver.
I would like to put my DH in day care twice a week from 9 to 2 and I found a day care but it was to regimented and he didn't like it because he couldn't do what he wanted to do, he wanted to do what he wanted to do when he wanted to do it and they wouldn't let him. :(
Once again I am in the try to keep my patience...got a call yesterday that DHs brother's son died unexpectedly..had stomach pains for 2 days and delayed going to the doctor... Now DH is obsessing about going to Calexico and the cost of the funeral ( I sent $$ to help already) but keeping that in his mind is the part that slips. How I wish family members would learn to keep some of this stuff under the hat until they have all the details as to time, place etc...now it is non stop all over again.
Ever since the time change my husband now gets up around 4 a.m., today it was 3:00 a.m. and won't go back to bed. He then want's me to be awake and calls my name and want's to know if everything is o.k. because I'm trying to sleep. Then he gets very upset at me because I'm not paying attention to him. I try to stay calm and pretend I'm sleeping, everytime I dose a bit, he wants to know if I'm o.k. He's also gotten very obsessed with the tiles in the bathroom around the sink and then tears the toilet paper in squares to cover the tiles. He can spend over an hour in there. When I wake up I never know how long he has been there. I think it might be the meds causing this behavior. He just started again on Zyprexa the end of October and Celexa (now 5 weeks). Today I put some mats over the tiles and I'm also unscrewing all the light bulbs, so that only the nightlight is on. Maybe that will help.
My husband does not recognize his reflection whether it's in a mirror, the microwave, the car window or the TV when it's not on. We have a lot of windows so at night I have to make sure all the blinds are closed. I've had to cover every mirror. He sees this man as a threat, thinks he is stealing things and times me in the bathroom because he thinks I'm in there with "him". The only med he takes is Seroquel which we only started this past week for anger and aggression. So I guess these symptoms are just due to AZ and not any particular med. He also gets up very early and is ready to shower and shave. Our bathroom is right next to our bedroom so there is no way I can continue to sleep with all that going on. Wouldn't it be nice if we could swap some symptoms and get relief from the ones that are driving us crazy. I'll trade covered mirrors for covered tiles.
All i can say is that at some point, it will all stop...for now, it is what it is, and 'this too shall pass'...My husband quit talking (for the most part) over a year before he passed away...I used to sit in support groups & hear people saying how their loved one was driving them crazy with repetitive ?'s, etc...I always thought "well, I have some things others don't have to deal with, but at least he's not driving me crazy with words"...nope, it was pretty silent...funny how once it's "all over" the silence is just really deafening. You ALL have patience and ALL are human!! The patience thing is "tested" time and time again...It was for me, and like many of you, I too failed miserably...Here's a good quote I read not too many months ago from the book "The Caregiver" by Aaron Althena: "I have ten times the effortless patience now that I had when impatience was effortless." The journey is long...you are ALL patient, you just don't realize it, and as one said above, you are all pretty hard on yourselves...I was too...May you continue to find patience, just enough for THIS day alone...and may all your tomorrows bring along the right amount as well.