SInce late November I stoped giving my DW antiphsycotic drugs as they were turning her into a vegetable. Since that time she has started eating again, walking better and is a little more coherent. This has given me a greater work load looking after her and chasing her around, but I thought it was a small price to pay for being able to enjoy her talking and eating. I have been fighting a loosing battle with the back door all of Jan.and Feb. so far. Just today she told my son that she is scared of me. He talked to me about what was going on, so I explained to him that I am the one who always makes her do everything that is neccessary, take pills, eat, bath, go to Dr. not run in and out every 2 miniutes etc. and when he comes for his 2 or so hrs. he is very nice and tollerant so she loves him. I think this is due to me being there literally 24/7 for the past 2 years. I thought I was doing the right thing taking care of all her needs but now I don't know. My PCP and the Geriatric Dr. both say I need a break but don't know how to arrange it. I can't just walk away on her and all the agencies in Ontario have no help. Im getting near the end of my rope and don,t know what to do.
selwynfarmer, Maybe it's time to reconsider the meds again. You can give enough to keep her more calm without turning her into a vegetable. We went through a period where I was afraid to go to sleep at night because I didn't trust him. I ended up moving him to another bedroom and putting a lock on his door. This never seemed to bother him, I think he felt safe in his room. He couldn't get out so that meant no one could get in to hurt him. at least I think that's what he thought. I did have a video monitor in his room so I could always see him. Some nights I would lay in bed and listen to him try to straighten the sheets on his bed for hours. Not sure what your wife is doing with the back door, but I ended up installing keyed dead bolts on all the out side doors. This was after he walked out on evening and it took three neighbors and two police cars two hours to find him. The fact that he couldn't open the doors didn't seem to bother him either. It took a lot of pressure off me because I didn't worry about him going out the back door while I was guarding the front door.
Sometimes we have to do what is best for us. The meds, the locks both sound harsh but without these, I could not have cared for him at home.
She may very well not know who you are. Her memory is receeding and you are--likely--not the young man she thinks she's married to. She may well be scared of you and your son needs to understand that she may think of you as a stranger--unless he has reason to believe you are hurting her--which doesn't seem likely. Can he--or other friends, neighbors, family--spend more time w/her so you can get out--take a nap--whatever. Lately we in the US hear all sorts of things--pro/con--about Canada's health care, so I don't know. Do you have a doctor, can you tell him you are at the end of your rope, does he have suggestions? Her doctor should be able to help you with some sort of tranquilizer--they can really help. I took 1/2 a Xanax to get thru it. I also gave 1/2 a Xanax to DH many times to calm him down. Can you get someone from your church, senior center, or whatever organizations are around to spell you for half a day. I hate to tell you that you must take care of yourself, especially when you say there's no agency to help. We've all heard that and it's almost impossible to do, but from my own experience I know it took a toll on my health. It's a hard choice, but she may have to go back on the antiphsycotic drugs in order to save YOUR life. Maybe another Canadian will post with suggestions, please try to keep yourself together, don't give up.
Joyce, she goes in and out 200 times a day and never closes the door. She is going to talk to her girlfriends on the back deck. Dosen't realise that it is o degrees f out. Betty, She is the love of my life and I could never hurt her. I have to be stearn some times or she just pretends i'm not there. I think she is just tired of being told no and you have to do this or that. When she was on the antiphsics. she would just vibrate, wasen't eating and could barely move around. The only solution from her Dr. is placement n LTC and that isn't an option with me yet.
Well, here's another Canadian, and I don't have much help to add other than what Joyce43* and Bettyhere* have said. I agree with you that here in Canada we don't seem to be getting the help that our American friends have: I'm thinking especially of Hospice. The most help I got was 2 years ago from the Social Worker at Pacific Community Health Care Centre (which I understand is unique in the help it offers). My husband's GP, who is on staff, there arranged a case number for my husband to get him into the system - at my request - and we were assigned a Social Worker, who knew the system. Nevertheless, it was an uphill struggle all the way and still is. I did some research today on Hospices here in Vancouver, B.C. and will investigate the Anglican Church's involvement; it looks promising. They may be able to give me the info. I need. (The Hospice Society as such have not responded to my inquiries.) Another avenue is the University of B.C. School of Nursing. I noticed in the last magazine sent to me (I belong to the history of Nursing Society) that there is a nurse at UBC who is doing research on this. Also, in Vancouver, the Victorian Order of Nurses used to offer respite care (my husband refused), and it sounds like you could so with some of that. I think I know where you're coming from: you're so busy trying to cope with what's at home that you don't have the time or energy to investigate how to get help. And, if I remember correctly, you live in a small centre. But you probably have some Provincial Health Care Clinic there, and they should be able to provide you with in-home care. If not, I'd squawk to the local newspaper. You can see I'm thinking out loud, because I don't have clear-cut answers for you, except you need to put yourself #1 priority here - church, family doctor, health care clinic, someone has to help you - otherwise you're going to go under, and you'll be no good to your wife or yourself. There is an answer out there for you. Don't give up until you get it.
selwynfarmer, Can you try locking the door so she can't open it. Maybe just to see what her reaction will be if she can't open it. I would tell dh that the door is sticking because of the cold, heat, rain, whatever it was doing at that particular time. I'd fix it in a minute. That satisfied him.
My husband hated me many times but like Betty said, I think it was because he didn't know who I was. That's why I was afraid of him, I knew he would never hurt me as long as he knew me, but at that time he had no idea who I was. He had no idea if it was hot or cold out. He'd go out in a t shirt in the winter and then he'd put a winter jacket on in the summer.
I remember when I joined a year ago there was a discussion about how they can hate us. You are correct that often it is because we are the one there making them do things, often things they see no need to do. How many times did we parents hear from our kids 'I hate you' when we would make them do what they didn't want to but needed to? I certainly said it and my kids did to. They are 'big' children and this is childhood behavior. Add to that the fact they may not know for certain who you are.
I agree you need to take care of yourself. Can you son do a whole day instead of 2 hours?
Selwynfarmer: Bless your heart. I have just recently been where you are and you have got good advice from the ladies here. You can tell that they have been there also. My DW has just recently got so bad that I literally can't take care of her. She is now in the hospital and will go to an ALF next week. As hard as this is, I have to keep telling myself that I have no other options.
On the outside, I appear to be OK, but I have been crying all day on the inside.
Here are a couple tricks for the door. Put a slider lock up at the very top of the door. AD people rarely look up and seldom see the lock. Then tell her the door is stuck because--whatever Joyce said above. Telling a lie to someone with AD is often a kindness, don't get into explaining things to her, she won't understand anyway. Also, their visual perception changes and they think a dark spot is a deep hole. Put a black or very dark small rug in front of the door and she may avoid stepping on it. Some people paint the door the same color as the walls, or they wallpaper it with something that doesn't look like a door--maybe paneling. These things usually work--but you never know. If she is leaving the door open, she's probably leaving other doors & drawers open, you can't run after her constantly. I sense a resistance in you--not uncommon, perfectly understandable. But things will get worse, your health will suffer. Again, I don't know about Canada, but you should be looking for a place for her before you end up with an emergency. I know you adore her, I adored my DH beyond reason, we were in grammar school together, but eventually I had to place him or I'd be in a hospital myself--and I've always been a very strong person. You take care of yourself, please.
Bettyhere*, did you ever try the dark rug to see if it worked? I heard that it would work so I went out looking for a black rug that I didn't want and decided I'd try something else before I spent the money for something I didn't know would work. I bought two large black towels, which I could use, and layed them on the floor. DH walked into the room and walked to them and stood right in the middle of them. Guess he liked that big black hole.
I also had the problem of dh going into all the bedrooms and getting into things so there again I put hook and eye locks at the top of every door. By the time I had finished, the only rooms he could get into were his bedroom, the living room and the kitchen. That was fine with him and it kept me from having to follow him around all day trying to keep him from hurting himseld and getting into things. You may not like the lock idea but whatever you do, if you have a basement, make sure she can't get to the stairs. Take care of yourself so you can take care of her.
Gosh, I hate what this is doing to all of us... the downside is there really is no OUT... We have to see it thru to the end...I agree that taking time for ourselves is all important... I try to do that several times a week for an hour or so each time BUT still when I return, the situation is still there and I must cope with it. As for DH hating us, I'm not sure what to call it... Maybe, I'm just a thing to take care of him... He is into himself and has been for a very long time..It hurts that there is no sharing or just simple unimportant conversation,, nothing... EXCEPT,, when his mind stirs up something that is not or ever has been a problem..Just today,, actually before 7AM, he accused me of never speaking to him... We have always just gotten up and dressed for the day and started right in with conversation, but today, he wants: a formal GOOD Morning, an inquiry into his sleep pattern over night, what hurts or HIS concerns..never how I am.. We have no choice but to take a back seat to this and to keep harmony the best way we can... We all know, that changes by the minute.. If we could just find a way NOT to hurt... Anyone out there, find it, I'm all ears and thank you for it.... Bless you all.
I should be the poster child for this topic. Right now, my dw Hates me and never wants to speak, see, or ever have anything to do with me. We have found that this usually lasts 3 days and 4 hours, although this time, I think it will last longer. Also, Tuesday is our 36th wedding anniversary, and we all do not plan to even mention it. For the time being, I am a mean mean man, and my daughter is unfortunately in her good graces. All she has to do is to either agree with me on something, or tell my dw how good I am being to her and she will then hate my daughter, and turn to me. The ups and downs of this disease is frustrating, but we do the best we can. Interesting incident at WalMart yesterday.. My daughter took my dw to go shopping and brought my 4 yr old grandaughter. Towards the end, my dw was bumping into shelves, shopping carts, and displays, and finally screamed that she could not walk...employees brought her a wheelchair, and she was promptly escorted from the store. I am a bit concerned about the walking into shelves and carts, and trying to find the cause.. eyesight? cognitive impairement? physical uncoordination? There are so many incidents that I often think that there is more going on than just AD. I am waiting for some neurologist to suggest something like shock hydrotherapy... does he really think that throwing a hair dryer in the pool will cure ad????
I am just entering the "hate" phase with DW. Yes, I do have to direct his activities. During the week, he is mostly home alone until 3pm when my son comes home from school. During the week, he has the freedom to either do, or not do, the minimal tasks that I leave in a daily note for him. By the time I get home, I don't really care if he has done anything or not. Sometimes he does nothing. That's OK with me. BUT, on weekends, the AZ "working" spouse must make up for lost time :). Yesterday, as I was cleaning downstairs, I called up to him to "please"empty the small trash baskets and throw the bags down to me so I could throw them in the outside gabage. He was resting on his bed and my request must have angered him. I waited for the bags to come down. Well, come down they did, aimed right at my head. Since I am new at the "hate", I was shocked, insulted, etc. and overcome with the dread we all feel when AZ behaviors change or worsen. This is also the lonely part of AD. I would not ever mention or discuss this with anyone I know. Shortly after the incident, he did not seem to remember and I did not bring it up. Just a weekend wound, this time a bit physical. At work tomorrow, I will say I had a very nice weekend. None of this translates outside the AD community. But, I am fairly freaked out.....
Isa, I've sometimes wondered if they are taking their resentment out on us, the nearest target and the one least likely to turn on them. I saw it first when my husband had spinal surgery many years ago, before Alzheimer's, and the fact that I was waking around without obvious pain seemed to infuriate him. It's a "Can't Win" department for us, but they do seem to pass on to some other behaviour, which can be not exactly winsome either.
G simply lays down in another room to avoid being with me...it is rather like living alone now. He resents having a caregiver here so I can get out..doesn't understand the reason for it and is often cool or standoffish to the person. I have given up trying to get him to do SOMETHING as it seems to really irritate him further. He says he is bored to death, but refuses to read, watch TV, go for walks....do anything anymore. Large sigh!
Sometimes, I think our spouses KNOW exactly what they're doing... It certainly seems like they have all the talent for alienating us...I know its the AD speaking but coming from a controlling person, he is more controlling, more self centered and less concerned about anyone else...We have days of no conversation, it's just more harmonious that way...The trick to it, is to find a spot in our hearts and souls where these insults don't hurt anymore.. Five minutes after an incident, they forget and retreat to their own little world....I, too, am freaked out...
It's interesting how different all our spouses are. My husband tells me dozens of times a day that he loves me--wants a response and maybe a kiss. Two minutes later, he doesn't remember and we do it all over again. I guess after reading this that I shouldn't get tired of having him tell me that he loves me--enjoy it while I can.
I can't believe how reading these posts is so familiar to me! These last two days have been awful. My husband is upstairs for the second day in a row, doing nothing, just lying in bed! This, all because I didn't agree with something said about politics. He hates when I ask him to take his pills, hates it when I suggest breakfast or something to eat, can't seem to stand it whenever I suggest he do anything! I'm at my wit's end. He is not as far along in his dementia as most of your spouses are, but is very, very pigheaded. My family was here yesterday so I could go out, for the first time since Christmas! He acted wonderfully. As soon as they left, the old ways were back. I try so hard to be understanding. I vowed I would not say anything when he slammed the door upstairs and went to bed. But, then I get softhearted and go in and ask him if he would like to have something to eat. He just looks at me and says no.
Kathi37: Your story sounds the same as mine. Do I leave him where he is right now, doing nothing, eating nothing, being angry at me? Or, do I risk further anger at me for prodding him to eat again? I just don't know what to do.
If he's safe, leave him there... I do believe our LO's sometimes know how to push our buttons,, mabe subconsciously, but like a child, you watch about 3:AM, he'll wonder down to the kitchen, make the biggest mess and the most noise, even the neighbors will hear.....Bev, He's having one of those lovely tantrums that AD is famous for... go to your room see if you can get some rest 'til he decides the tantrum didn't work.... I find I do a lot of retraining,,, some work, most does not... But you do have your sanity to protect if at all possible.... I have vowed that I WILL be sane when this is all over....Not easy for any of us... Good luck all...
I agree if he is safe don't confront him. He will eat when he is ready. They are just like children wonderful around others...but sometimes a terror with the person who loves them most. I think is because they know they can get away with it.
I called him for dinner and he came down and is now very, very nice. You're right. I've had some rest today and tried not to get worked up. I think when I'm at least able to put it in writing I can calm down. Thanks for the advice. I have to learn not to let him push my buttons.
selwynfarmer---here have been several good sugestions above. Consider them and consider this idea. Implement ways to defuse her irritation. Example: Insteadof confronting her repeatedly about going in and out, and not closing the door. If the door doesn't work she can't go out. (Use one of techniques above). Then on your schedule provide her a set time or two when she can, because you worked on the door. Another example: Meds stirred into her applesuce , pudding, ice cream, or the like (her favorite goodie) gets them down--no fuss, no frustration. When it comes to other thinmgs like eating and baths consider these ideas. Try to have meals at certain times. Nothing said, just prepare and serve them. call her to the table--"....'s on." Keep on hand and available to her an assortment of healthy snack foods--peanutbutter and crackers, fruit cups, etc. which she can have to make up for meals she might not really fill up on. Bath time needs to be a set time. Use fiblets--our helper told my DH he couldn't ride in his car to go to the store if he wasn't clean. The kinds of things we'd do with our kids. Can't hurt to try these ideas. Also,talk to her Dr about the meds. The way you described how she was when on them sounds like they were either too strong or the wrong ones for her. There is likely a way to make things easier for both of you with something else or a smaller dose. Don't rule it out until you try.
Bev..all of a sudden G joined me in the family room...I didn't make any comment ( for a change)and he was fine until the weatherman came on the TV..can't deal with that, but returns when he is gone from the screen...so weird.I guess we let them lay down where ever, join us when ever, do whatever works...I'm at a loss to know.
Try to go with the flow and remember -- this, too, will pass. I find that nagging just does not work. I've discovered that the best way to get DH to swallow his pills is by putting them in a white dessert bowl on top of his plate before breakfast or dinner is served, and not say a word about them. He'll usually take them without protest, sometimes even get his own glass of water if I haven't got round to it. I can get him to do chores by explaining that we have to clean the bathroom before we can go out. Or before we can have dinner, etc. He used to question the logic of this, but no longer.
I no longer ask him whether he wants to have a bath (the answer is no) but just tell him when it's approaching his bedtime that it's bath night. He protests again, and I say, Well, no hurry, tell me when you're ready, and after a while he's asking me to come get the bath ready. This was all harder, by the way, before he was put on Risperidone.