I have always been a person who needs her space. I have turn the master bedroom into my room. I have my desk, computer, TV, hobby, bath and wine! This has worked well for the last couple years. Recently he has wanted me with him more. If I am in my room I might as well be miles away. I am trying to stay in the living room with him more. I read or try to watch TV with him, but I have things that need to be done. I got a new HDTV for my room, now I find he likes it better than the LR. I only have my comfy chair and the desk chair. GRRRRR he taking over my chair. Thankfully with it getting dark earlier he is going to bed about 8 PM.
It is also getting hard to leave him to get my exercise or run to the store. I have seen the AD and caregiver joined at the hip and said if that ever starts I am out of here! Well you just can't get out of here.
I know exactly what you mean about being a person who needs her space. I am definately one. But now, there is no more "space" for me. I usually go up at night a take a bath just to have some alone time. Even with that, I can hear Robert outside the door milling around in the bedroom waiting for me to come out. I am trying to learn to adapt to this togetherness. But, it's hard.
I'm paying for an exercise club that I never get to use anymore because it is women only. Robert can't go with me and he doesn't like for me to go. So, I'm going to try and start walking around the neighborhood. Evertime I mention it, he says "That's something we can do together isn't it?" It drives me nuts, but I'm trying to deal with it.
My husband went through that phase in the beginning of the disease. I believe the person is afraid of being left and not being able to find you. You are his one constant in a changing world and he can't reason that even thoough you can't be seen you are nearby. I really think they are always somewhat fearful and you are their guide in a strange new world. you will also be the one they can be angry with and demanding where they can assert themselves. This phase will pass as they progress in the disease only be ready for other possible behaviors.
I need my space too. My wife M is stage 6+. During the day she sits in her chair in the library looking at pictures in her books. She sleeps a lot during the day. I do household things and yard work by myself. We sleep on a king size bed at night, as we have for 41 years. I can usually get her to take a bath each evening. I can't leave her at home alone as she will get into trouble. She almost set the house on fire two years ago when she overheated the pressure cooker on the stove. I do all the cooking and meal planning/preparation now. I can't take a day off for golf or shooting sporting clays anymore. I take her shopping with me and to doctor appointments for both of us. I prepare and give her medications (aricept, namenda, seroquel, paxil, cerefolin) throughout the day. My world has shrunk considerably as her AD has progressed over the last 5 years. I do all this gladly and with no regrets.
C, you are a saint! I think I would go mad if I could not get away on my own for at least a few hours every week. I go to an exercise program and folkdancing with a group that is now all senior women. My husband used to love this but he is no longer able to remember the steps so it is too frustrating and he decided on his own to give it up. I am fortunate in that he has no longer uses the stove after leaving the element on several times. He gets his own simple lunch and I encourage that. I want him to continue to be as independent as possible. He also takes his own meds that I prepare for the week. I do check that he has taken them but he has been really good with that recently.
I think my husbands need to be with me when I am not at work is one of the hardest things to get used to. Before AD he didn't want to go shopping with me. He encouraged me to be independent of him to the point I flew to Michigan and drove to Mississippi by myself. Now I can't hardly go the bathroom without him wondering where I am at. He still understands that I have to go to work but he expects me home soon after. I get one night a week I can go to dinner with my best friend but even that is becoming a challange, because I feel guilty because I know he would prefer me not too. Few people call me at home anymore because he gets upset that is taking time away from him. He even gets angry on the occasions that my son calls. Maybe I would feel differnent if I had not been independent before.
I do get time away from home when Igo to work. I think right now this is what keeps me sane. I tried to take a walk last night. I told Robert he could walk the first couple of circles around the block with me and then I wanted to speed up and get some exercise. We start to head out the door and Shannon says where ya going? I tell her and she says I'm coming. Then Ryan figured it out and said I'm coming too. So I had Robert, Shannon on her bike and Ryan on his scooter. Every couple of seconds it was mom watch this. So, after two go arounds, I was ready to stop.
Robert's home by himself this week while I'm at work. Yesterday didn't go very well. He didn't do anything at all during the day - didn't even take a shower. Last night, we made a list of things for him to do today. He "says" he's done everything on the list and that he's showered and shaved. So it seems like today is a better day. I'll know for sure when I get home.
I understand all that you say. We are together 24 hours a day, 7 days a week. Most of the time, I just "go with the flow", but it can get frustrating. He just had his 58th birthday this month, but his movements and demeanor are of a much older person. I try to work out and get some exercise, but because of the dependence our recent trips to the "Y" have been failures. This is a huge change because he was a super athlete. Acceptance. Boy what a loaded concept. Do I work on acceptance and sacrifice my very essence? Sometimes I feel as though that is what is happening. I feel my own identity and abilities slipping into oblivion and even though my husband is fairly passive (thank you, zyprexa), his needs are a priority. I did get out one day earlier this month and as the day drew to a close, these terrible feelings which felt as though I was returning to prison kept dominating my thoughts. I would never express these frightening and depressing thoughts outside this forum. I know they are taking me down a really dark road. Most of the time, I am functional, but the reality is that I am so unhappy and on the verge of tears when I really think about our situation. We could be living this for a long, long time.
I know what you mean about the dread of returning home. Sometimes, I get those feelings when I'm on my way home.
I just can't think too much of the future. I know that we could be living with AD for many, many years. When I start thinking about it, I start to feel paniky. You know, not only has our future together been robbed, but my future in general has been robbed. Not only are we in prison, but we have a life sentence, with little possibility of parole. It stinks.
I never understood what people meant when they said they needed their own "space" away from their spouses. Since Sid worked 60-70 hours a week, 6 and sometimes 7 days in a row, I felt as if I had more than enough of my own "space". We treasured every minute we had together. When his working days stopped suddenly because of his AD (although we didn't know that's what it was at the time), it was still okay, because I worked full time, so he was home doing errands and helping out with house stuff.
It was when I retired, and we moved down here that I started to understand the need for time and space of my own. It is difficult being with each other 24/7. He depends on me to be his memory; to organize his day; to write everything down for him; to answer all questions from doctors, insurance agents, anyone who calls on the phone, because he can't process information as quickly as people are saying it.
Whenever I do any writing, I need complete quiet so I can concentrate. He never understood that, so even if the door to my office was closed, he would knock and come in to tell me something. After telling him at least 50 times, if it's not a medical emergency, DO NOT BOTHER ME, he now leaves me alone when my door is closed.
I love it when I can get away for an afternoon with a friend. I don't like to leave him too long, though, because of his balance problems from the neuropathy, and the danger of him forgetting to take his pills. He has new ones for his diabetes that he has to remember to take 3 times a day.
I do believe emphatically that it is absolutely essential for us to get away from our spouses for a few hours a week, or else, as C. said - our world will shrink in relation to the progression of the AD. I don't want my world to shrink, but I can see how it may happen. I will work as hard as I can to keep it from happening. joang
My husband want's me around 24/7, even when he doesn't know who I am at a particular time. Since I retired last Oct. to be with him, since I couldn't leave him at home safely anymore, I gained cuite a few pounds. So I started to walk early in the morning while he was still asleep. I left a huge piece of paper by the bed telling him when I would be back. Well that didn't last long. He didn't want me to be gone when he woke up. I talked him into walking with me, but after about 3 minutes he was ready to go back. I also need my space, witch I don't get anymore. I've been thinking about getting him into Adult Day Care and see how it goes. Wish me luck.
Adult Day Care sounds like a great idea for both of you. It will give him something to keep him occupied; he will be well supervised; and it will give you a chance to have your own time and space. Even two days a week would be a big help. joang
Thought this would be a good time to repost this discussion. My husband has been with me 24/7 for 3 months except for 4 hours a couple of days when he stayed with a caregiver. This is not as hard on me as Joan because we have worked together in our own businesses for 53 years, since I was 17. But I do need some space. I used to be able to go to town and do some things about whenever I wanted to until the last 6 months. When my Mother (she lived with us 15 years) passed away in May he started not wanting me to leave without him. He told the caregiver the first day I was not coming back . (and he was in an agitated state when he said it).
So, I decided, I was going to give him plenty of "going", so almost every day we go into town for breakfast and do some errands while he waits in the car for me. He hasn't complained one bit...grrr. So I have a couple lady friends who are ill and I wanted to visit them so I told him I was going to visit them a half hour each this week. He could come with me if he wanted to. No, he really didn't want to come. So, I said you can stay home and nap while I am gone...no response.. I won't leave him more than an hour and I will have my daughter check on him about half way through. lmohr
For years I dreamed of the day I could get some time with my husband as we always seemed to work seperate shifts and days. That was until four years ago when the AD reared its ugly head. The time I longed for was to be filled with all the things we talked about doing over the years. Ad has been our life, joined at the hip or he is miserably anxious. If I am out of his sight for more than a few minutes all the repetative behavior starts and he shadows me. Hes in a rocker three feet from me and is looking for me. If he sees me he calms down.
I can't leave him alone as he has no concept of how to use the phone anymore or to even get out of the house in the event of an emergency. This from a man whom many thought was a genius of many subjects. Its so hard to watch.
We did the 24/7 thing as he built his cave and we both got isolated in it, and to some extent still do it. But not 100% of the time anymore. It has been a fight for me to get out even to just attend to business. My therapist smiled when I told her that I can get out to attend to business, but not to have fun. That, obviously, is the next thing I have to try to do.
Tomorrow I'm going to go to lunch with a bunch of women in this community. It seems this little group which has invited me to join them go to a place where it is easy for each of them to purchase their own meal (which takes care of the whole check thing) and them share a table in the back of the restaurant. I'm told that no one bothers them there no matter how long they stay and chat. They meet once a month. I'm going to leave him a bagel and two kinds of cream cheese and I'm going out, not to attend to business, but to have fun. We will see how I do.
For two years I ran the much bigger montly ladies lunch in my community. It got so big that it needed at least two people to plan it for each month because we didn't go to the same place twice. I coordinated. I didn't get to go to the last 4 out of 5 of them. Basically it died because I didn't push it on. It might have revived for September, and I'm hoping to be able to go.
Togetherness, I can relate, the word i use is symbiosis. attached at the umbilical cord! going on 9yrs. i have never left him overnite, and only recently with aides for 4hrs tops during the day only. i am as accustomed to him as he is to me i guess =he wont sleep unless we hold hands and he dozes off quite peacefully then. i am having a hard time thinking of respite even for a niter out but i know i need it. divvi
Wow! I'm with DH ALL the time. About 1 or 2 a month I go to a meeting at church and leave him for a couple of hours. Now, I'm not so sure I should do that. I do enjoy getting together with people and I'll tell him I'd like to go. He says that sounds like fun and that he's like to go, as well. I always try to make sure he really wants to go. I make all of the arrangements, etc. and at the very last minute, he'll announce he's not going anywhere. If I want to go and leave him I can just go ahead. It never ends. I honestly can't make any plans at all. Even if I invite people in for coffee or lunch he's all for it and at the last minute, he wants me to call them up and tell them to stay home. I naturally refuse to do that but I'm holding my breath the entire time they are here wondering what he might say. So far, he's not said or done anything inappropriate, but I know one of these days he will.
I feel like I'm kind of stuck. He's been like this for about 8-10 months. Frankly, I'm getting pretty sick of it. I told him that the other day. Said I was getting pretty sick of him changing his mind all of the time. He said "I'm sorry." I felt like tearing my hear out.
Mawzy, no, it is not going to change. It is all part of the isolation thing that happens to all of us. It drove me crazy that he wouldn't go to our clubhouse for the parties there, or to the pot lucks, or...
Doesn't bother me anymore. I literally haven't had more than two events in the last 3 months that one could call a social life. And that is probably true for anyone here who's LO is at the same stage my husband is at or worse. He is late stage 5 or early stage 6.
I'm remembering the second Tuesday of July and that I left my DH alone to go to the Caregivers Support Group in town. I remember how I felt when that group went a couple of minutes over! That was just a month ago! Now we are in to the dying mode and at the most DH could live a week more. WOW - it takes my breath away.
frand, this really went fast for you, didn't it? I don't know if this is good or bad. Reading about how long some people on here have had to struggle with the end stages, either way is so heartbreaking. How can we care so much about people we've never seen who are on this board? I feel like I'm going through this dying process with a good close friend.
Dazed said it well. We've never met. Don't know where you live or much about you but I feel close to you. I'm so sorry for what you are going through and wish I could make it better. Blessings to you and your family at this time and always.
I decided to go to my monthly HS class dinner last night. I hadn't gone for 6 months because he threw a fit when I mentioned going. I talked about it for a few days and he never commented but last night when I was getting ready he asked me where I was going and he got very agitated and said "now we discussed this and you was not going to these", He is jeaslous of me and thinks I am going to meet someone (a man) and leave him. I told him I hadn't gone for 6 months and I had been telling him about it and I was going and would just be gone 2 hours. Daughter and son in law were coming to visit with him and have supper with him. He sat in his chair and didn't talk anymore.
When daughter came I told him the situation and son in law said he was anticipating that reaction. Daughter said he was fine while I was gone but he was not talkative when I came back. I told him who all were there and they asked about him and missed him.
He doesn't do well in a social situation and going with me to this would be very uncomfortable for him, but he can go if he wants to the next time.
Imohr, it is really important that you keep up some kind of normal social life. A monthly dinner with a group of friends you've known since you were a teenager sounds almost perfect.
Your husband's attempt at isolating you is very much like what my husband did. You stopped going to your HS class dinner. I stopped going to the monthly Ladies Lunch at my community. And both of us need to cut that out and get back to seeing and talking to people on a regular basis.
Starling, Its toward the end of Sept. Did you go to the luncheon you mentioned on Aug 18th? Mawsy, I don't think you should hope he will be out of that stage soon. I've found if I don't talk about going anywhere without him, it helps. When my daughter comes, she is here 15 -30 mins before I leave and then I just go. She says he don't seem to notice. The last time I told him goodby, I went and kissed him and said I was going shopping. I left and my DD said I wasn't out of driveway more than 3-5 minutes, and he started "where's your Mother?" in angry voice. Even though he's never been violent, she was kinda scared at first. When I got hom 3 hours later, he was pouting the rest of evening. That was last year. I haven't left him alone since Jan 08, mainly because he cant use phone and couldn't help himself in an emergency, or our beloved 13 yr. old dog. And me home alone! Not gonna happen. I'm resigned to the fact. If I should be home alone, that means he would be Gone.. I'm not ready. Not sure if I ever will be ready.
DH was still pouting some this morning but has not mentioned last night. I said are you ready to go out to breakfast? He said he wasn't going. I ignored him and set out his pills and asked him what he wanted me to set out for his breakfast before I went to Mc. Talked about how he should keep going out and getting a little exercise and finally he decided to go. I made it a quick trip with no other stops. He really looks forward to going out to breakfast. I do too, their vanilla sugar-free iced coffee makes my morning.
Imohr, maybe by tomorrow he will have forgotten about it. You did very well to go, and an excellent job of getting him out this morning! Congratulations!
Imohr, no I didn't get to go. The men's group arranged for him to go out to eat and to an auto museum on Tuesday. The ladies group arranged to visit me on Thursday. The lunch was on Wednesday. However, one of the women recognized that an error had been made. If there is an October lunch, she is going to make sure my husband has an activity on the day of the lunch. Looks like that is going to get done.
What was really important was that the two of us had some socialization that week. It made a big difference.
I like to have my own space, too, and prefer to do some tasks/chores alone. My husband was home alone for 9 hours each day Mon. to Fri. until I retired last year. Now, he is clingy and repeats himself so much it makes me want to run away. I’m glad that I can still leave him alone for a few hours. He seems to wait by the window for my return, though.
I often tell him that we’re not joined at the hip and that I already have a shadow and don’t need another one. I don’t think he understands what I mean, but he seems to sense that I’m frustrated when I say that.
Evalena, it sounds like he is in the stage of "frightened that if you are out of sight, that you are not coming back" and the insecurities with the stage are tremendous. The reason button is broken and you can't explain anything to him because he won't comprehend it. It's out of sight, out of mind. My husband would wait on the carport and sometimes the driveway for a couple of hours for me. I think it is because we are their anchor to the world, and nothing we can say will change it. BUT, this stage will pass, if we can emotionally hold on! I waited for him to go to the bathroom and then I would get up and get something done; or after he was asleep (it was great during the sleep-most-of-the-time stage) I would get a lot done. I could give him the broom to sweep the sidewalk and get the dishes done or the bathroom floor mopped! <grin> You have to learn to work around each situation as it changes. You can not change them. AD won't allow them to. He understands that you are angry, but he really doesn't comprehend WHY. Just keep telling yourself, this stage will pass.
Adding my two cents by saying that I woke up this morning thinking, "I've got to get to the store for some groceries and just can't take him with me this time". So the discussion of togetherness, struck me as another 'amen' topic. Sometimes it gets me down. I don't mean to be selfish but I find myself struggling with some of the same feelings so many of you have expressed. Again thankful for this site..
Sometimes, I need to be alone. I don't mind cleaning the kitchen or the bathrooms because I do it alone. While I was cleaning our bathroom I gave my DH the job of cleaning the porches, sweeping, cleaning the chairs. I was doing a good, thorough cleaning when I heard him screaming "help, help". I thought he had fallen or was in some kind of pain. No, he just could not find me. I could not hear him because I was still cleaning the bathroom. I am so sorry he gets scared when he can't see me. And I am so, so sorry for myself, also. I can go to the drugstore, or the library and he doesn't seem to mind being alone at home, but maybe we are in a new stage. Maryd
My husband can still be left alone, but I have noticed that he either follows me around or looks for me if I am out of the room for any length of time. He has started to watch me do my hair and makeup in the mornings--never did that before and the other day watched me clean the microwave like it was the most interesting thing in the world. Even my mother has noticed how he keeps track of me. He can no longer work --as of July 1-- and I am not used to him being here all the time. I love him dearly but sometimes I just want to me alone :)
I go to a support group meeting once a month and I leave DH alone when I go (2-3 hours). I've also noticed that he follows me around. Or, if he's watching TV and I come upstairs, he comes looking for me. I'm generally in my office working on my stuff. He'll come over and interrupt me. I feel so bad to say this but he always wants to hug and kiss. Not just a little hug and kiss. He wants to be romantic. He doesn't shave but once a week now and I have a hard time getting him into the shower and frankly, I'm finding that it really annoys me. I try not to let it show and I do try to get into the moment, but....
This morning was my 4 hour respite with a caregiver. H was not happy about me leaving and issued a few angry words then settled down. I was hoping he had adjusted to me being away a few hours. I plan to go to my HS class monthly dinner this Thursday evening and I am sure he will not be happy about that either. Caregiver said he just wanted to talk this morning and she didn't get much housework done. I told her that was fine. She said he asked her about his guns.
The "I'll kill myself first" issue came up again last night. All the guns are gone, so that part isn't a worry, but I tried to explain how devastating suicide would be for all family members. He calmly accepted what I said, but..really? Not too sure.
The caregiver was fine with things. He wasn't threatning, just wanted to know where we put his guns. She said she didn't know but she didn't have them. She can only work for me 4 hours a week because she has other jobs. She will be back next week. It is like kathl37 suggested, "He calmly accepted what she said, but..really?" You never know. They also keep bringing up the driving issue occasionally.
My H has never suggested he might "kill" himself. I don't think that has ever entered his mind.
Mine talks about it all the time; he has for 25 years. In the earlier years, It would come out as "this isn't worth it anymore, I ought to kill myself." Or "I just can't take it anymore..." In the years from about 10 years ago to one year ago, it would come out as "I'm just not brave enough to do it." Or, "If I had the guts,..." Then, in the last few months to a year ago, "how can people live like this..." Or, I just can't take it anymore,..." In the early years, I would get all worked up and offer to get him help or just be totally stressed out by it. He would just laugh and tell me that he was joking. He would tell me anything to get me "off of his back." Then, I would tell him that it was really hard for me to hear it all of the time and to just quit talking like that. More recently, I just listen and pat his hand or arm. No comment is really necessary.
Is it really all talk or would he do it if he "had the guts"? Your guess is as good as mine, but I think if he really did intend to do it, he would have done it by now. I still think it is all talk and may be he feels it is one thing that he has control over. It's hard to say but there isn't anything that me stressing out over it will solve.
I know that this sounds so "cold." I really have heard it for his whole adult life and just can't stress out over it anymore. What happens will happen whether I stress or not.