After my Mon/Tue blog, I have been unable to write due to an emotional meltdown - mine. I finally calmed down and wrote a blog today. I invite you to log onto the home page - www.thealzheimerspouse.com - and read it. I honestly don't care if I acted irrationally - I felt I was entitled to it. I'm worn out from taking all that Alzheimer's Disease is throwing at me, and I cracked.
How do you take it? Do you ever just melt down as I did? What to do you think about us having to put up with everything just because it's Alzheimer's Disease?
Joan-I wonder what else you wrote before you edited your remarks :0). You are in pain with your shoulder and I'm sure worrying about surgery. You've got your dad as well as Sid to take care of. You're exhaused. While a temper tantrum won't change anything it sure feels good once in a while. As far as "taking it"-what's the choice. Others have suggested day care and while expensive seems like the way to go. There are scholarships available. You've given so much seems the community should have something for you.
Joan, I'm so sorry. The ranting and emotional ups and downs is the hardest to handle for me also. I also have trouble with the "dead pan" type attitude from my husband. Meaning that he will act so put out over very small things. Showning no emotion is hard to do. At some point, we all crack. I understand completely how you feel and wish that I could help. But, we all know that there is nothing that someone else can do but understand.
Sorry to hear of your pain, Joan. A similar situation occurred here last night when my wife argued with me for not letting her have a credit card anymore. She agreed to give me her credit cards months ago because she keeps leaving her pocketbook all over the place. But, naturally, she has forgotten all about those conversations and we went through an evening unlike any since we dealt with driving. 24 hours later, I still feel totally drained of energy. While I was doing food shopping yesterday, she was next door at a card shop buying birthday cards. When I came to meet her, she was looking confused at the cash register, wallet and pocketbook open for all to see, and searching for something. I asked what the problem was and she said she couldn't find her credit card. (The cashier said she had tried running her library card, then her Y card, then her AARP card through the credit card machine to pay for the birthday cards!) I told her she no longer had a credit card in her wallet and that I had just reminded her of that and she had more than enough cash in her wallet to pay for the items she purchased. But, for the next few hours she screamed at me, on and off, insisting I was treating her like a little child and she wanted her credit card back!!! AD definitely does take an unfair shot not just at the person WITH AD, but also at the caregiver spouse.
Oh Joan, I am so sorry that you are suffering these emotional trials. It isn't fair that the ones to whom we pledged undying love have the power to take so much from us. My dh isn't experiencing the deep rages yet but that may come. At the end of some days because I try to placate him so much, I feel as if I have no personality anymore. There is absolutely no humor around here. We are in a position to enjoy life but because of his AD, we can't. He won't go out to have a nice dinner anymore because it is so expensive (we can afford it easily). McDonalds is fine with him because I order and pay for it. Who cares about cholesterol anymore? I must say the thing that drives him over the edge is money. I handle all the finances so I know what we have but to hear him every time a bill arrives, we are that much closer to bankruptcy. We all feel we are powerless and that is what is so difficult to deal with.
Joan, I don't know if you remember, but, I lost my cool with my husband a couple years ago. Screamed at him, I mentioned it on this board an another member was ready to turn me in for Elder Abuse. She even called to ask authorities if what I did was considered abuse. Made feel like a complete nut case. I was ready to never post on this board again, until several members supported me, even sending personal e-mails to tell me they understood & I was only human & so stressed that I didn't know which end was up. I did start my husband in Daycare the next week, which made a huge difference. As others have said, you have some much going on at this time, it is no wonder you loss your patience. Please don't be so hard on yourself.
I have lost my temper several time and usually it is because I am tired. I have no problem with DH during the day but by bedtime I am tired and he is ready to argue about everything. You, of all people, know that you are not alone in this and that we all need to release our frustration with life in general and our spouses in particular. Otherwise you would not be human and we could nominate you for sainthood!
Yes I had a big ol meltdown not long ago too..It was just fatigue building and the sameness of every day and the frustration of friends who seem to have written us off,all the doctor visits and more..I have beat the green waste bins nearly black and blue! A few times I have raised my voice at my otherwise calm easygoing totally dependent husband..but it is never at him that I get angry it is just the general situation and resentment at Alz thief..We cant go things like we planned or that others do either. I miss having a partner and I get sick of having to stay there to make sure the meds get taken and all the other things in terms of jobs and tasks we used to share now falling 100% on me.
I don't recall that incident,I may not have been here then but it sounds like that person didn't have a LO who has dementia and would be classified as a Troll!
I know we all need to get away from it all as often as possible, BUT, if you go for any decent length of time that will actually revive you (like overnight), you come back to a lo who is in crisis from your absence and then you have to live with their symptoms escalating and their behavior melting down for days and days until they've gotten over your leaving them. I went to spend time with the grandkids last month, left him with our youngest daughter here at home for 4 days and he drank too much and got ugly with her and a few weeks later when I spent the night with one of our daughters and left him overnight with the oldest daughter, OMG, I thought he'd suddenly catapulted into the next phase - he suddenly couldn't remember anything for 5 minutes, he got belligerent and argumentative and chased me into the car one night yelling at me that I could never come back, lost control of his bowels and bladder - IT WAS AWFUL! Two weeks of routine later (and I took him off Namenda), he's back to his normal before my overnight away.
Face it friends, we're trapped by this disease as surely as they are. And, I wonder who I will have become when it is all over - perhaps Saint Theresa (not).
Holding ones temper during an irrational moment takes a lot of strength and anyone who has been at the caregiver thingy for very long does not have a lot of strength left. we just do the best we can with what we have to work with and go one from there. one thing I have learned from this trip is not to second guess just pray for strength move forward and let God carry you while you get your strength back. He seems to be the only one who can give me what i really need. DW has lost that ability a long time ago and for the most part does not even realize what i need to go on. Her world is shrinking both mentally and physically and there is nothing I or anyone else can do about it. Reading these comment I realize that many men with AZ seem to have a lot of anger issues while most women seem to have anxiety or depression issues must be the sex thingy. I really don't know which is worse I only know we just DO IT and move on to the next issue. We don't look ahead cause we know where the road is going. We just don't know when it will end. We also know that after their life ends loss will be evident but we will continue to live some sort of life without the person with whom we have shared our life with. Just walking on alone.
She had a love one that had dementia. He was in the early stage. I still remember her name. I guess she was a saint. I just hope everything is still going smoothly for her.
It's OK to loose control sometimes, but it never feels good later.. So, bless you all, we are , afterall human, have sanity, feelings and are only treading water the best we know how... No instruction booklets with this disease, no two alike so we do the best we can... Lift it to God, stay positive and don''t let this change the wonderful people you are for hanging in there. Bless You Joann.....
Joan, How can anyone berate us for getting angry and LOUD once in a while.If they are not walking in our shoes then they should stay off our BACKS!! I don't thnk any amoung us caregivers can honestly say they NEVER loose their temper.I know I do it and while I am not proud of it,there are just times I have had all I can take for one day. Ours usually comes at night time when he is up and down sometimes 25-30 times before he even goes to sleep.He will take the covers off the bed saying he lost something.I remake the bed over and over again.Finally got tired the other night and told him to sleep in it the best he could.And I like you went to the chair to sleep.That chair and I are way to familar!! Then when he finally sleeps he wets the bed and we are up again several times changeing depends and sometimes bedclothes too.So again I say no one can do these things ALL THE TIMEand not get angry and have to blow off STEAM> Thank -you for being honest,that just shows you are human not a trained robot doing a mountain of a job>
I can relate to how you are feeling. I'm exhausted, heart broken and tired of crying. I have no one to help or talk to so I have to deal with this on my own. No family members from both sides to help. Sometimes I feel like just running away. I'm not a person anymore just a maid and punching bag. I am just mentally and physically exhausted. We have a right to explode.
lee012, Did you mean literally that you are a puncing bag? If your DH is hitting you you need to get him to his doctor ASAP and get him on meds to calm him down. My DH has never hit me but he used to threaten me. Back then I didn't know that was one of the signs of dementia. Now that he is on meds he is calmer and nicer!
I well remember wondering what my life would be like 'after,' But by the time my DH finaly did die after 10 yrs of CGing, I had pretty much grieved as much as anyone could. Nature takes you into survival mode, even if you want to sit in a dark room and cry. And part of surviving is to scream, as I had done, until the neighbors came to ask if everything is OK. You have to let it out and knowing it's the disease, isn't enough to offset the constant traumas. But I learned to make things easier for myself--and I learned that there are times when NOTHING works. I learned not to argue early on and I learned not to explain. Joan, I understand about snacks and glucose levels, but I would offer the snack, silently with an endearing smile and if he didn't eat it, I'd leave it nearby where he could reach it and, chances are, he'd eat it. Or come back in 20 mins, sit with him, share the snack. I learned that they would usually say 'no' as a first response, so avoid asking or telling. I know that it's astonishing when a man who would take a bullet for me could stand before me, fists clenched, eyes bulging, veins throbbing and screaming, 'I could kill you.' Sid may never get to that point, but he feels bad about things and sometimes doesn't care if he offends you or not. Give him a kiss and a sugarless cookie, don't explain how his behavior makes you feel, you won't get a coherent response other than he's sorry, maybe. He's in the terrible-twos, he can't explain clearly what he wants or needs, sometimes he doesn't even know what he wants or needs. Frustration and fear motivate him. You are right when you write about how you have to change, etc, but you still live in your pre-AD marriage, Sid doesn't live there anymore, you have to more into his world & he'll only move further away. And he's getting to where he cannot or will not do simple things, let it be. Your plate is overflowing, you have to make things as easy for yourself as possible. I don't write this easily, been there, done that--no one knows better, but try to make things easy on yourself. Work with what you know is today's reality, yesterday is long gone. Blessings. Betty
PS - I always gave my DH an expired credit card to carry in his wallet. It might cause a problem with a clerk, that gets worked out, but it made him feel better.
Something Bettyhere* wrote makes great sense. "...getting to where he cannot or will not do simple things, let it be." Joan, I know you think Sid can still do simple chores, but the real fact is that if he WON'T do them, then he really CAN'T do them. As we all know there is no reasoning with them, no use explaining anything to them, no use expecting anything of them at a certain point, and maybe Sid is at that point. I know I did not want to believe it with my DH, but long before they "look" helpless, they become helpless. It is so very sad, but the sooner we quit trying to make them be somebody they no longer are, the easier it gets. I am so sorry you are having a rough time. I'm so sorry everybody is having a rough time. I wish none of us had to be here. I think what I'm trying to say, but not doing it very eloquently, is that if we have no expectations, we have fewer disappointments.
Joan, I am so sorry you are having a hard time. I can totally understand and I have not found peace with this situation either. I spent all day doing yard work at both the office and at home while hb watched tv then had to cook dinner and finish all the inside chores and mop the floor for the second time where he wet! I didn't blow up this time but my escape is to go into my room and shut the door. He doesn't wander or anything but it still feels sorta mean to do this.
Betty--your comment to Joan "but you still live in your pre-AD marriage, Sid doesn't live there anymore" I think sums it up perfectly. The day I realized that was the day my stress level went way down. I had been expecting my husband to act and reason in the way I was used to for almost 30 years; but that guy was gone--never to return-- and he snuck away without my even realizing it! In his place was someone else who looked like him on the outside, but mostly wasn't the same man. I had no choice but to accept it and move forward. Years later, I still see the same essential sweetness inside of him (when he is medicated properly), but that is the only resemblance to who he was. Now I have picked up the gauntlet and am repaying him for how well he took care of me all those years.
Joan, I am so sorry that you are having such a bad time. It is probably good that you can release your tension sometimes. I always suffer inwardly and as a result am having headaches and blood pressure problems. The main problem is always being with them. We do need regular time away and I do not have that. I have wild dreams of revisiting my early days before I was married. Probably, that means something.
Joan, I also am sorry you are having a difficult time. I used to get very angry at my husband because he wouldn't do things he was capable of doing. For instance, he is still capable of mowing the lawn or shoveling snow in the winter, but just refuses to do it. Once I realized that the only person who was getting upset was me, I started to let it go. Now I'm just glad he can still take care of his personal needs and make himself a snack if he wants. I cannot talk to him about anything as he no longer is capable of holding any type of conversation and that is what I miss the most.
MarilynMD, I could have written what you did. While DH can still do a lot for himself, for instance, if I think he should drink some water, I'll ask if he wants some. He usually will say yes, and I just go ahead and get it for him. He could do it, but by the time he gets up, shuffles to the kitchen, finds a glass and gets the water, I do it and move on to other things. If I'm not right there, he will get it. I don't get angry with him anymore - yes, I'm angry at the disease, angry that we don't have the life we wanted, but not angry at him. He gave me the best life possible for 35 years, my turn.
Joan, I too can totally relate to your meltdown. I was thinking about this ever since you wrote that blog & for me it’s this: My brain knows what he is & isn’t capable of doing (most of the time), but my heart doesn’t. My heart can’t believe that the strong, funny, intelligent man I fell in love with so many years ago really doesn’t know where the bedroom or bathroom is. It can’t believe that he can’t remember how to use the remote or how to answer the phone. It can’t believe that he is so confused in the morning when he wakes up that he doesn’t know where he is. And my heart can’t believe that this wonderful man is slowly disappearing before my eyes. So when my brain tells me that he needs help doing things, my heart is telling me to just wait a minute because I’m sure he’ll remember how to do that. When, oh when, will my brain tell my heart that he is not the same guy you fell in love with, he only looks like that guy. I guess my heart doesn’t want to listen because then it will break completely.
Thanks to my greatest support system - all of you!
Betty and Marilyn,
I gave up living in my Pre-AD marriage a long time ago - it was the most painful thing I ever had to accept. Unfortunately, with AD, his functioning keeps changing, and I have to keep learning and accepting the new things he can't do. It's tough to keep up with all of it.
Still, he IS capable of more than he is doing, evidenced by the fact, that since my meltdown, he has not uttered one complaint about getting up and doing things for himself.
Elaine,
Excellent point about your heart and your brain. That's exactly how I feel.
Vickie,
Your statement "He gave me the best life possible for 35 years, my turn." is how I should feel and act accordingly. My sister and I were having some deep discussions this weekend about our childhood and our lives. I said that I was never happy until I married Sid, and the first 35 years of our marriage were the best years of my life. I loved my life with him. No matter what happened, good or bad, I was content and happy knowing that he was in my life. My thanks to him for givng me such a good life should be to be a better caregiver.
Thank you for sharing Joan. I actually sent your blog to my boss. Other than the fact that my husband has no other physical ailments (like Sid's leg) the behavior is the same. Last week my boss was in town and felt we had to have a talk because my attention to detail was not at its best. Really???? Huh. I wonder why? I work a full-time job that also involves commuting 4 hours a week. In addition I own a gift basket company that I run in the evenings and weekends. I have a medical condition myself I have to deal with. Then I am the fulltime caregiver for my husband, manage all the household chores and finances, etc. etc. Sorry I am not at the top of my game. Either deal with it or replace me. There. That felt better! :)
Kadee, whoever that person was, she wasn't dealing with what we are.....We have to be able to tell it like it is here...we here at Joan's are the backbone of the spouse caregivers, and what we say here reaches milllions....they all need to know that we rant, rave, complain, cry, and take the best possible care of our spouses. You should not have been subjected to that....I'm sorry you were....
Joan--I guess the point is, for you--is it worth a meltdown on your part, emotionally and physically, to get Sid to do more for himself? If I had to answer that question--I would say no. Getting so upset raises BP, causes the body to release cortisol (stress hormone), raises heart rate, who knows what all else? If a meltdown would produce permanent results, then OK, I guess it would be worth it, but with a dementia patient, how long do the results last? (I have to admit, I haven't been in your shoes. My husband has no concurrent health issues and has had significant agnosia for several years now--there is absolutely no way he could do much for himself when that kicked in. He needs help constantly and that's not negotiable.)
Marilyn - good point. I actually have been thinking about that lately. Things run so smoothly around here when I do everything. You know - like the duck who appears to be gliding along the water, but is paddling frantically below the surface. He's the duck and I'm the paddling feet. However, I am about to be incapacitated for an unknown period of time with my shoulder surgery (see Wednesday's blog), so he's going to be forced to do what he is able to do whether he likes it or not.
Joan...You alone know what your dh is really capable of doing. Sometimes they need a little nudge in the right direction. Good luck with your surgery. I will say a prayer for you and I know everything will go well. DH will probably miss your care and he will say so in his own way. Wish I could give you a hand.