I know that most of you do not complain about the lousy lives we all have to live for the joy of taking care of a spouse who doesn't care, appreciate or believe what we do to make their lives better. I'm sick and tired of walking on eggshells to keep his applecart even while I'm seriously considering anti-deppresaants. I'm sick of a man who tells me that I can take a hike and he can take care of himself. Hah! What I wouldn't give to be irresponsible enough to let him find out how impossible that would be for him. Actually, I'm just not that mean; although my "mean" geannie does show her fangs occasionally. I'm tired of living with an 80 year old toddler. I'm tired of going to the doctor with a man who doesn't remember what his problem is and won't tell the doctor the truth anyway. I just want to go somewhere for a month and forget all this responsiblility and that I no longer have a partner in the true sense anymore. I want to be together enough all the time to be able to respondo his behavior in a detached adult-like way and not take anything to heart. I want for him to not break my heart every day. I'm so sick of tears and not living.
Bless your heart. It's so hard and you have every right to vent. We've all been there (or will get there eventually) where we are the resident punching bag. Knowing that does NOT make it easier for you. Misery does not love company... You get to be miserable because it's YOUR life and it's YOUR feelings that hurt. No one who feels as sad as you do needs to be told "Huh, that's nothing..here's my story!"...even though we all have had them. Does it help to be told that we agree it is unfair and cruel and you don't deserve to be spoken to this way. Because that is the truth.
My heart reaches out to you tonight and I wish you COULD get away for a while to regroup. Even a weekend would help. I wish I could come to you and help you. Just know you are in my heart and I'm with you in spirit. This, too, shall pass. Or so they say!!! Nancy B*
It is very late, and I am on my way to bed, so I can't research it for you now, but honestly, somewhere buried in the blog archives are blogs saying exactly what you are saying. We have all felt that way at one time or another. It is part of being on this journey. The only thing that has helped me is to know that I am not alone in my thoughts and feelings - that everyone on this board has shared them. We can't fix it, but we are here to let you vent and tell you that we understand.
mothert, I totally hear and understand the pain you are feeling and I wish I could make it all go away, really I do. Alot of people tell me that "God won't give me more than I can handle and my response is "I know HE has me confused with someone else.''
I like that, "HE has me confused with someone else." Okay, my sense of humor has returned. It's been a particularly trying week and I am tired (oh, heck, it's a new week starting out just like the last, ugh). And, I know this is just the beginning of this ugly journey. I think knowing that's there's so much more to come is really the worst part of all. But, I will get used to it because I have no other choice. Just like all of you.
And, thank you all for your empathy and heartfelt responses, it really means so much. NancyB,, what a sweetie. I don't know your story as I'm pretty new to this forum, but thank you for your generous heart.
Mothert we are sending you ropes with knots to hang onto and lots of hugs (((((hugs))))). It is so hard but it won't be forever. Look for respite, you need it.
Don't just think of antidepressants - call your Dr. and get them. I'm sure that most of us are on at least one type or another. We can use all the help we can get. If you can afford to pay for a couple of hours of help get it and get out of the house. It's worth it. You only THINK He made a mistake but you can do it! <<<hugs>>>>
mothert all of us have been where you are at one point or another. those of us who are longterm now into the disease and caregiving will attest that these feelings come and go thruout our journey. luckily they dont stay forever but its important that you get some time away from caregiving even a few hrs/week. if you dont you will burn out faster. take care divvi
I find it helpful not to dwell on problems we MIGHT have in the future. You need to know what can happen but no one case is a like. You will find that handling today's problems will prepare you for future situations.
mothert, I hear ya sista. I'm pretty much living your life right now. The past few times that he has yelled at me to get out of “his house” I get my coat & purse & start to go to the door, & then he stops me & tells me not to go. Deep down he knows that he can’t take care of himself. I hate the face that I just don’t know what will set him off. Like you said – it’s like walking on egg shells. I have gotten better at not responding or arguing with him, but other times the words just come out of my mouth. The thing that really grates on my nerves is when we are driving down the road & he continually points out places & he says that he worked there, or I’ve eaten at that “eatery”. It’s confabulation. He starts 5 minutes after we leave the house & keeps it up until we get to our destination. It absolutely drives me crazy, but I’ve learned not to try to tell him that he hasn’t worked there or eaten there. I choose my battles.
Oh Boy!!! your vent sounds a lot like mine at times and I am sure that we all can hear parts of it in all of us at one time or another. I think there is something to be said for learning how to adjust to this NEW way of life that we didn't ask for. This morning I woke up thinking of the Serenity Prayer, I don't know if you know any of it but it says help me to accept the things that I can not change and then later it says and give me the wisdom to know the difference(the things you can change versus the things you can't change) I have been fighting against the pricks so to speak and trying to make things alright when they aren't instead of just accepting what it is for what it is. Whenever I do that I suffer for it mentally, big time. I know that the sooner I accept things the way they are the better off I will be. While saying that I know that it is not going to be easy and it seems to become easier the longer that you deal with it. Some of our friends on this site have been dealing with dementia beast for a long time. You and I have not been dealing with it for very long. No matter how long it has been it is difficult but not impossible.
For those of you who are pretty new here. One of my first posts was "I don't think I am going to make it as a caregiver". Here I am almost 4 years later and still hanging in...actually doing better than when we first started on this road. Thanks to pills and Joan for this site I just might make it all the way. So all of you hang in there and if you LO needs pills for aggression, anger etc. get them from the doctor.
I need to vent, so I'll put it here. Tonight my wife refused to brush her teeth, then refused to use the mouth wash the dentist suggested in place of brushing. Then gave my trouble in getting her dress off. Finally wouldn't lie properly in bed, but just curled up at the foot (we still share a bed). She has probably already forgotten all about it, while I still have to live with the memory. I need a good stiff drink!!!!
My kids say that they get through child rearing with caffein and alcohol. Maybe that's how we'll get through our ordeal, too. I am so not looking forward to those days ahead. I k now, I shouldn't even think about tomorrow, but that's my nature. For today, I only have to put up with a bad attitude and nasty looks and pouting. Just like ElainH above, whenever Dh talks about "maybe we don't belong together anymore", I ask him who is going to take care of him. He doesn't liek that question, but within minutes of that question, his attitude changes to "how much he loves me and can't live without me". Boy, if I survive this journey, I WILL NEVER MARRY AGAIN!! Life alone is much better than hell together!
Must be in the drinking water. Yesterday and today has been a living hell. I really didn't think I would make it...took my blood pressure and it was 203/79. He hates everyone in my family including me, what am I doing with the money, no one..do you hear me...no one is coming in this house to help me and I am not going to day care or any place else. Get me a ticket and I am going back to Illinois.
I really think I am reaching my limit. The VA social worker called to tell me what was available and he went off the deep end.
Well I'll put in my two cents here too..Had to meet with the elder care lawyer today to work on out trust update and the changes are going to be significant but not terrible. Then I get home and find that the HD TV has no signal..that went out last night..so I call the cable company..go the help on the phone but it didn't work...and in the meantime DH comes in and says he has the fire going for the steak, what do I want him to do? in a word..wait..until I get your tv sorted out.. Then if that is not enough...I am sitting her now listening to the roar in my left ear and feeling the fullness. I have Meniere's Syndrome and have been in remission for about 4 or 5 years..pure heaven until now..only before it was in my right ear..this is in my left..just great..So far I only have cochlear Meniere's, God help me if I get vestibular or worse the mixed varitey. Then I will be in a mell of a hess.
I had a horrible day yesterday. I just wrote a long paragraph venting also. But I deleted it. Felt better just writing it. I'll tell you this, though, I had a glass of wine and it helped.
mothert, there are three things you need to do now.
1. Drink a glass of wine. 2. If you have children, have them come for a week and you pack up a bag and go somewhere...a cruise would be nice; or Florida where it is warm....or even a local hotel....just be by yourself - or ask a close friend to join you for dinner, or a movie, etc. Explore places that you have always "meant" to see but don't have time. (AND your kids can only call you in case of blood)
3. If you don't have children who will do this, put him in a nursing home for a week (tell them it is a test to see if he fits in) (assuming you have a POA and he'll go)...
I have more ideas - the idea is YOU HAVE TO SPOIL YOURSELF. YOU HAVE TO LOVE YOURSELF..We love you and we're hear to listen, but you have to take action. If I wasn't able to get away some, I would have gone nuts long ago.....
We appreciate you...and we're here for you....tonight I will lift up my glass of wine in a toast to you!!! You are special!!!!
Mary(Red)
p.s. the others of you - please feel free to take the advice I just gave mothert!!!!!
a) not all wines have sulfites. White wine doesn't have as much. Don't drink Italian wine.
b) Better living through chemistry. TAKE THE DAMNED ANTIDEPRESSANTS AND PUT YOUR SPOUSE ON WHATEVER WILL CALM HIM DOWN>
C) Agreed with Mary. Spoil yourself as much as you possibly can. Even let her sleep in her dress, Marsh!! (changing her is easier than trying to change someone in pants!!)
I was all for "not changing for bedtime" during the late stages. Makes for a lot less work and "what the heck". Who cares... Just change for shower or as necessary.
Mothert, may I please jump in on your venting? I am sitting at work on the third day of a bad head cold. (with my supervisor's permission.) Today, I have the chills and really should be at home. A friend and co-worker asked me earlier why I don't just go home. I told her that I will probably get more rest here than at home. When I went home at noon, DH was once again adgiated about bills-finance, etc. If I go home, this is what I will hear; I won't get any rest at all. I called son while driving back to work at 1:00 just to talk to someone who cares. I just said HI to him and visited. I didn't tell him how DH was acting. I did tell son about my cold and he said the appropriate nice things. Then I started thinking about daughter and how she keeps asking me what I want her to do. I tell her to think about me often and be aware that DH is really not himself. She thinks that I should divorce him.
So, that is my vent. If I feel this tough tomorrow, I'm pretty sure that I will stay home. One nice thing that happened today is that I got to sleep until 6:30 a.m. No waking me up at 5:00 a.m. to sing and dance.
My DH acted so badly last time I went on a trip without him, last year to New York for 5 days, (it was heavenly) I fear doing it again. He is much worse now, but also I am in much more need now! I just am not sure if it is worth all the grief it causes him.
Wow! Thank you all for your sweet and heartfelt comments = I feel so special. I do have a saving grace (besides the Lord), I have a wonderful sewing machine and I sew, sew, sew. I almost feel guilty because I don't spend much time with dh when I have a project (which is as often as I can). I know he resents it a bit, but he puts up with it most of the time. And, I keep telling myself "do what you love while you can, things won't always be this good."
As far as taking a trip without him - he says he'd be fine with that but he wouldn't agree to having someone stay with him. Our younger daughter tells me that all I have to do is say the word and she will be here - but she is the one who is an alcoholic and isn't as responsible with family matters as she is at work. She emailed me one day last week and requested she come up on the 5th of this month. I told her that we have a group activity on that night but she insists that she wants to come up that day so I agree - she also says not to worry about dinner, she has it all figured out and she will do it all. Great! I'll go do my thing and see them later. Yesterday she emails and asks if we're still on for Saturday and if yes, she will have to leave early on Sunday because she is having a Super Bowl party?? Grrrrrrr - I spent most of the night boiling over that. The idea of coming up is to spend time with her dad and she cuts the time short so she can have some butthead party. Okay, no more venting, I sound like a nasty old hag; I should be grateful that she and her sister will come at all.
I guess the point of all that is, I'm not sure I can count on her and the other daughter counts on me to take her kids so that she can have a break. I think I'll just have to wait until things get considerably worse before risking having a caregiver come in so that I can go. However, I do partake regularly in the wine ritual - sometimes more than I should.
Last night was really a fright. DH was edgy most of the day but nothing specific. He still thinks all the time about how if his mother doesn't love him that no one does. Including me and his two pups. As I have mentioned before, he spends a lot of time thinking about money and looks at paperwork all the time.
I get a yearly bonus at work which is coming up soon. We have always put it on our principle of our mortgage. this was the discussion last night. He wants to keep the money in the bank to draw interest and wait a couple of months to put it on the mortgage. I told him that it would save us more in interest on the mortgage than we would earn in the bank. He finally ended a pretty good conversation with a statement about how I am just keeping him around and that I don't love him and that I never include him in anything and that he needs to buy his own bed because the bed that we sleep in is mine because I bought it, etc. He then told me that he was going to sleep on the couch. This was about 8:00 p.m.
He was sleeping on the couch when I took the pups out to potty at 10:30 p.m. When I went to come back in 5 minutes later, he had locked the door. He said that he didn't know I was outside. I knocked pretty hard on the door and he opened it and was really mad that I woke him up. He went back to the livingroom and I to the bedroom. He then came in and turned all the light on and the TV up high (took the controller) and told me that if I want to make noise that he would make noise also. I chose not to react and after about 45 minutes he came in and gave me the TV controller back.
I turned it off and went to sleep. It was about 12 mid-night at this point. About 1:30 a.m., he came into the room with a really scared look and told me that he had to sleep with me because he was scared of the noises outside and that someone was turning the front door knob trying to get in. He asked it it was alright if he slept in "my" bed. I assured him that he could. He fell fast asleep and woke up acting more normal.
This morning, he talked to me about the noises and how scared he was. He also told me that he wants to get his own twin bed to put in the livingroom because the couch makes his back sore. I told him that we would shop for one this weekend and then I left for work.
You bet it was. Normally nothing ever scares me but finding that door locked did the job. I was quite shaken afterwards. I will be taking my keys and phone from now on out to the yard. One good thing is that son lives next door so I could have walked to his house if I needed to. However, I really don't like to involve him in this scary stuff. Only when I really have to.
If your son's old enough to live "next door" - i.e., out of mama's house, he's old enough to be involved in this scary stuff. Daughters as well. Not to say you should throw too much responsibility on them, but let them know what's happening.
Oh Mary (in Montana), How I relate to what you have said. I have my house & car keys clipped to my belt loop when I go outside. My DH has locked the screen door on me more than once; thank goodness it opens with a key on the outside. I think I’ll make sure that I also have my phone. Coincidentally my daughter lives directly across the street. I totally agree with you on not wanting to involve the kids unless absolutely necessary. They know what’s going on. I am fortunate that I only have to work one day a week & DH stays with our daughter when I work. Some mornings he is confused when I take him over there & he is angry, but DD says that he settles down after a short while. We have another daughter who lives 10 minutes away. We take her kids to school 2 days a week. I take DH with me because I haven’t been able to leave him home alone for about 6 months now. Well Monday he told me that he was tired & he didn’t want to go (we have to leave the house by 6:45AM). I asked him numerous times if he would be OK & he said he would. So I told him to go back to sleep & that I would be home in about 2 hours. BIG MISTAKE! I called DD who lives across the street to let he know that DH was home alone & to keep an eye open in case he went outside. She called me as I was dropping the grandkids off at school & told me that DH stopped her as she was leaving to take her kids to school & told her that kicked him out of the house. By the time I got there 15 minutes later he was SO mad at me. He was going to see our neighbor & when I pulled into his driveway DH turned & looked at the car & held up his fist at me. Our neighbor told him not to do that & if he did it again he was going to call the police. He listens to our neighbor so he calmed down a bit but was still mad. Then my neighbor told me that he was going to take DH on as errand with him & then out to lunch to give him time to cool off & give me time by myself. I am blessed to have 2 people in my life besides my daughters who take DH & give me some time by myself. You are right – it IS a rollercoaster ride! Sorry this is so long but I too needed to vent!
in earlier stages my DH would lock me out as well. he paced around the house alot during those days, and i would make a quick run to get the mail and during those 2 minutes he would make it to the door and bolt it with the keyed deadbolt. then start pacing again. when he'd go by i'd pound on the window and he'd smile and go by until the next time around!! it was quite an anxious moment i can tell you. he'd fool with the knob acting like he was going to open it then would smile thru the window and pace again. ugh!!!!!!!!!!! i was lucky he opened it back up after a good while of me begging. i had keys on me an dcell phone without fail after that.
elaineh the shaking fist isnt a good sign. means hes capable of escalating into a rage. if it were me, i 'd cal the dr and ask for meds increased or changed at this point. it can happen at any time once they get to this point. sorry, i am sure you were terrified. good to have the neighbor on your side but remember too the neighbor could have issues with him as well while out. divvi
divvi, you are probably right. I’ve heard others say that too. Unfortunately he isn’t seeing a neurologist & from what I learned here I called our PCP & requested Seroquel for DH. I know that sooner or later he will have to go & have an evaluation for different meds, & I know it will probably mean a stay at the hospital. Probably sooner than later. Thanks for the advice.
Elaine, changing meds doesn't ALWAYS mean a stay in the hospital. My DH had his meds changed several times and he never had to go to the hospital one time for these changes. I handled his meds myself, and we'd taper off of one, gradually introducing the new one until we were at full dose and I'd report the results to the doctor via email as he requested. Don't worry about things that may not happen at all. and remember SOONER is always better than LATER.
just as a followup. my DH in about early 5 stage, would pull his fist back at me at times. then out of the blue one time he struck at me. i never really thought he'd follow thru on a punch. it hit me in the upper arm and i was totally shocked. he was a boxer in college so i knew after that i had to resort to zyprexa to help with the aggression otherwise i knew i had to place him if i couldnt get him under control. he slept alot on the med but it got us thru the rage stage as i call it. we never want to beleive they could or would hurt us but we have to remember they are not in control of emotions even early on. yes i hope you can manage a way to get him into the dr to start the ball rolling and not have to wait. staying on top of the game is so important. divvi
divvi, Thanks again for the advice. It’s so helpful to read about different meds here since, like I mentioned, he won’t go to the neurologist. My PCP told me he will help anyway he can. I keep a list of the meds people here mention & I will put zyprexa on it.
Elaine, please get him on meds as quickly as you can. My DH in his "rage stage" behaved alot like yours and divi's DHs. He would become anxious in the afternoons and pace. He locked his brother out of the house once and would frequently make a fist and threaten me. Then once he actually hit me in the head and I had to call the police. It's important to get him under control BEFORE something happens so you can keep him home. I had to fight very hard to have the drs okay his return home. Some meds they used to treat my DH were Ativan, Haldol, Celexa, Lexapro (Celexa & Lexapro are anti-depressants), Depakote, Neurontin, Risperdal, Clonopin, Seroquel. The ones that he's on now and have him stablized are Seroquel, Clonopin (a controlled substance) and Neurontin. Good luck.
Thanks so much for all the advice & help. Now I have another question, where do I begin? He is on a low dose of Seroquel before bed to help him sleep & it normally does, although he usually wakes up at least once during the night. Like I said DH won’t go to the neurologist. Do I ask my PCP to prescribe something? I am just at such a loss with this. I know that from reading here many of you have had to make decisions by yourselves & right now I’m feeling that way. I have noticed a change in his demeanor. He is sullen & angry. Then at times he is depressed & he cries because he knows that he has treated me badly. It’s getting to the point where I don’t want to take him anywhere when he has an attitude. Any advice or ideas on how I should proceed would be appreciated.
Elaine, from my personal experience, I would not take him out when he has an "attitude". It just stressed me out and we were both better staying home. I know nothing about the meds because I didn't need them. Good Luck. Looking forward to meeting with you again this Easter.
When we renovated our house I had keypad locks put on all our doors, so I can get in any door by punching a code. We are early stages so I haven't faced the more complicated issues, but I do like the keypad locks. Anyone who comes to work at the house gets a different code, which I can remove if they stop working for me.
I'm new to the site but I "get" all this. Reading some of the entries about verbal abuse I'm remembering a time when my AS told me I could just get out - he didn't need me around telling him what to do. I asked a logical question - "who would take care of you if I were not here". After thinking for second he said - "I'd just get another wife - you're not the only wife around". I couldn't help it - I started to laugh. I thought "Oh yeah - they're just lining up for you"l
hi there matkins. welcome to this group. we know what we are talking about. most of the time, the other times we are ranting and raving about how messed us our lives are living with AD and family/friends who dont get it. yep there are plenty here who have heard the same things from spouses. some wish we would have taken them up on it early on.. grin.. lots of handson caregivers here who know whats going on in our AD world divvi
I hadn't thought of keypad locks when I had keyed deadbolts installed in doors. I might not feel so much like a warden w/my keyring if I had those. The little wirey thing to unlock pantry and other room doors that I don't want hb to enter. My prayer is he'll stop getting into things soon.