Oh yeah, I can not quit-there is no one else to take my place! Another rough day and I just lost IT again.Can not seem to keep myself under control. I get so angry and upset with the same old things.I know he can not help it but ----------in my mind I keep thinking if I yell loud eough or tell him often enough IT WILL GET THROUGH !!Well as you all no it does not get through and all I wind up doing is giving myself a migrain again. Will I ever learn and except-I doubt it -but I do keep trying even though I just want to crawl into a deep hole and pull the opening in after me!!!!!
i think its very easy to become overwhelmed with the everyday stress. maybe you can find a bit of time to destress with reading abook, a hot bath, working in the yard, paint, or anything to take your mind off AD for a few minutes. it builds up and must blow or we will blow. i used to color in my grandaughters coloring book and it sounds strange but i found it soothing. if you yell at him that will only add to the later stress as we know its not the cure - no =it wont get thru- there is no bargaining nor reasoning here. the only thing you can do is reason within yourself that you must try to get a grip and find a way to destress when its time before you explode. eventually with time you will come to terms that its not something that can be dealt with only endured.
I am glad somebody else loses it Bak. We walked to the coffee shop this evening. I needed to see that there are people and talk to one. Even if they were only taking my order. Gord asked twice if it was time to leave. I said no. Then he started with the tearless crying. The head bobbing, the shoulders shaking, the bottom lip quivering. I am ashamed to say that annoys me more than makes me feel sympathy. I asked him if he does it purposely. He said yes. Probably he didn't understand what I asked. I would say that 99% of the time he has no idea what I am saying. However, I feel that he does do it purposely to get his own way.
Oh Betty I am sorry for your day and how tough it has been. Can you tell me a little about yourself? What makes u happy or brings a smile to your face in any given day? Do you get any kind of break in your day? If you'd like to share I love to listen.
I know what you mean about being with "healthy" people. I crave association with people who know what I am talking about. I live for phone calls from my DIL because she is the only one who understands me, dh and our lives. She has made it a point to educate herself about AD and how it affects all of us. She always asks about me and how am I feeling before she asks about dh.
My own daughter has no idea about this disease. She comes two or three evenings a week and is very attentive to dh but she believes everything he says or tries to say. This week he told her we fight and he is only trying to help me. Then she tells me that I should be more patient. She isn't here when he tells me I am lying when I don't know where some of his tools are, that I probably gave them away. I am waiting for dh to get mad at her to see how she reacts. It should be very enlightening. She doesn't seem to grasp how many abilities he has lost. Just like a 3 yr. old, he will take things apart but doesn't know how to put them back together again.
I am sorry for venting but sometimes it just gets TOUGH!!
You don't have to be sorry for venting or loosing it. We all do. Some days I come on here just to see if anyone else lost it today,,,,,,, or if it is just me. Hardly ever is it just me. Must mean we are all human and can only take so much. Yes, this does seem like we have a life sentence except real inmates have more luxuries than we do. They are taken care of by the prison system. We are tortured daiy watching our loved one die little by little while we TRY to keep them safe and sound as possible. It truly sucks but we have each other, our cyber family, to get us thru. We will survive....... our new residence may be a padded room, but we will survive. Hope everyone has a great weekend.
I'd love to QUIT!!! Especially at night when he fights my putting drops in his eyes. I suppose he doesn't understand they're to keep pressure low so he doesn't develop glaucoma. Neither his eye doc nor GP understand how difficult it is. Squeezes eyes shut, holds my wrists, etc., etc. They both suggested I put them in when he's asleep. HA! He wakes up as soon as I touch him. I won't tell you how many times I give up. Last night the bed was wet, but his clothes weren't; I think he just stood up and peed on the bed!!! Tonight he wouldn't put Tenas on nor use the bathroom before going to bed. If this is the beginning of another problem, .... I'll QUIT! ;)
I would like to QUIT too...I just got back from Iceland. It took 2 weeks to decompress and then I was back here to this insanity. What did I come home to? Let's see. the house was filthy and I am still trying to get to it, only been back a week, then the cats were over fed...and the hubby's insulin was not given correctly...lucky there was no real emergency, then there were time sensitive bills that did come in and some legal workd too that DH would not tell me about nor let his brother who was staying with him go over any of it with me on Skype..Doctor appointments last week, and I was back to taking care of a friend's kitty while they were on a holiday, the two of them, hubby and wife, to a nice road trip together...while I can't even get DH to go for a walk around our yard....and conversation is even more distant than I remember it being before the trip. When our youngest asked if I was excited to be coming home over the skype, I just said 'Hell NO' and she was surprised. Well it is easy to have a follow your dream life when you live on the other side of the nation and the other two on the other side of the world... Oh the trip to Iceland was fun..there was the usual house work cleaning the summer houses...and the weather was generally "June Gloom" but it was warm, no need for winter sweaters, and the first ever blue berry festival was fun and I started to learn to knit and I am going to take that up for some mindless hobby to try to decompress. Then back to it...it is the sameness of every day, the lack of meaningful conversation, meal plans for someone who doesn't care if he eats let alone what he eats, can't DH out for walks in our yard and on and on...who would't want to quit?
I understand all your frustrations,anger and stress and the last thing I want to do is critize but on Sept 13 2011 at 2:00am in the morning my wife Jan died of alzheimers complications after a 6 year battle. For most of that time I was her only caregiver. We were married at 19 and for 50+ years we were inseparable. Now her cremains set on the bedroom floor waiting to be distributed across the graves of all the critters wild and domestic that have gone on before her that she loved. Right now I would give anything to have her back healthy and well but I know that is not possible and as the tears well up in my eyes I realize that me like you faced all the feelings that you are now experiencing. PLEASE just remember that this journey with alzheimers WILL come to an end someday and it will probably be before your ready to let go of you loved one. Once they are gone it will be over for them but not for you. I urge you to look into yourself and try to put aside those feeling and just hang onto them with both hands because before you know it time will run out and you will be alone and there is no worse feeling for a married person than to feel alone and to know it is permanent. God knows and loves you all for the sacrifices that you make everyday and know that it does not go unnoticed. Arms around you all and may GOD bless you. Bruce DeGarmo
I put Gord on the toilet this morning. I went to make the bed, leaving the door open. I heard the bathroom door close and reminded myself that that was not a good thing. I went back to the bathroom a few minutes later. Gord was standing and he had peed everywhere. His pullups, diaper, jeans and socks were soaked. Worse yet, I walked into it. As I ranted about how this could happen, I thought of your words. I got everything off him and cleaned up him. I hugged him and told him that I was sorry and that I know he can't help it. The problem is, we are human. We all know how this will end. I, for one, know that I will have endless hours of recriminations and guilt. I am a flawed person. Like all of us, I am tired and stressed. It is the same when I see mothers so angry with their children. I would like to tell them that childhood is fleeting. I would like to tell them that there will be days years from now when they would give anything to feel those little bodies in their arms for one minute again. It is not so easy to do when you are in the moment. I know that there will be many, many times that I will want to run away.
How well I can relate. Check out the blog - Take This Job and Shove It! - http://www.thealzheimerspouse.com/Takejobandshoveit.htm
It took me YEARS to learn, but each time I "let go" of another expectation that my husband will act like he used to before AD, or he will do something he used to be able to do, or he will be able to make a simple decision, or he will remember something from 5 minutes ago, my own stress lessens. It is the constant fighting to hold on to what was that causes us all the stress. I am much sadder now that I have accepted more of his deficiencies, but also less stressed.
jang, this is the true test of patience and compassion. you did a wonderful job of controlling the normal response and instead hugged him and told him you know how difficult it is to comprehend. i think your line ' it is not easy to do when you are in the moment' is so exact.to stop and try to reflect before acting- hard but it isnt impossible. we all have our days we do it better than others.
BAK, you need to get away from it for at least 2 days, If you have no one to help you then you need to consider placement in a NH for a couple of days. In my area they will take them for $130.00 a day.
We could debate whether their actions are purposeful or uncontrollable, but it really doesn't matter one way or the other. We as their caregivers must learn to cope with their actions and it is difficult when "in the moment" but like anything else, with practice and hard work it can get easier. bak, have you considered trying a medication for yourself to help with the situation?
$130 a day??????? When Gord goes for respite in October, it will cost me $34.95 a day. I am getting 12 days. That would be an awful lot of money at $130 for each day.
Bruce your comments are so real. I too am so impatient sometimes and then when I cool off, I am able to think about "later" after my dh is gone. I thank my Lord for reminding me of these thoughts to help me make it a better life for me and my dh. I already feel that I need to grow a lot more in this disease before I am ready for my dh to depart from this life, but even then, I know it will be horrible. Much more so than any day we have spent here in the now of this disease.
Take care Bruce and thanks for the advice,,,,,, we all need it.....
We all need to stop and pray for each other to have the strength for another moment. Hope all have a better evening.......hugs and prayers,,,,,,
Private pay respite for my hb in the AD wing of local nursing home: $135. Respite in one he was in last December is now $255.
I must remember "in the moment." This a.m. he refused to lift his feet to change shoes, socks, briefs, pants, etc. Once in awhile he's cooperative, mostly he's not. He's a strong, self-willed "coot" still:) I was "unglued." Gave up when I got yesterday's clothes off, gave him clean ones and left him to deal w/getting them on tho' I checked him from time to time. Spent some time wandering around the house in his briefs, but since we were going no where by then and expecting no company, I didn't care. I won't miss this part at all.
Me neither Zibby-I understand what Bruce was saying is true,but I am sure that he too must have had days that he was just ready to scream and run the other way.If not,Bruce,you are either a saint or had a calm DW.Either way I know how terrible you must miss HER not the Alz. her. That is what I try to remember about my DH-the DH he was before this d--- disease took control of both our lives. And even though I KNOW IT IS THE DISEASE-there are times I just react in the WRONG way-but that is better than walking out the door and leaving the care to someone else.. So I guess I will continue to "loose it " from time to time and come here to vent. Joan-I am not sure I will ever get to the point of understanding that you are.
Me either Zibby. My dh was still sleeping when I got up cuz he sleeps better after 3am. He greeted me with NO underware on, I knew there was trouble in the bedroom. I was right, he peed in the bed then apparently went to the bathroom, set on the toilet, did not hold willie down, and peed on the floor. All this and missed the pad that was in his underware. This is not something I will miss either. Him yes, this crap..... no. Just had a rough few minutes and this is the way I vent. I come on here so I won't rip his head off...... today....
Ok -there just has to be a way to hold "willy" down-we go through this same thing all day long.I told him this evening I was going to put an anchor on IT to hold it down so the pee goes where it is suppose to! After a day of playing potty police I am worn out and the mop is tired too.
bak: I can only think of 3 solutions to the dilemma you are facing:
--medication for you to help cope
--more time away from your husband (respite)
--permanent placement
Each of us comes into this situation under different circumstances, with different strengths and weaknesses. My husband is a challenging AD patient, was "dismissed" from daycare due to his behavior; has had two lengthy stays in geripsych wards. Before placement, I chose to use respite--lots of daycare time and bringing help into the home. You may make another choice, but one thing is for sure, you need to do something to lower your stress level.
Bak, we come here to rant, rave, scream and cry. Today, Gord tried to punch my PSW. She told me that had he connected, there would have been blood. Yesterday, he was trying to poke another PSW with my Swiffer mop. Tonight, he told me to f...off as i was trying to stop him from spitting out his bedtime medications. I am with you. I am ready to quit. I am confident that I am doing the very best I can; however, I always feel that my best is not up to standards. I do keep striving to be better but I always seem to fall short.
We were at the memory clinic today. I felt so sad to see all the new people starting out their journey. What a terrible road to travel.
I have a confession to make and it concerns us all. WE ARE ALL HUMAN AND THEREFORE ALL HAVE HUMAN FAULTS. I am no saint or any different than any one of you. There were days when I was ready to just throw in the towel and say enough is enough but I would stop maybe read a verse or two from the bible and pray until I cried till the tears stopped or I couldn't breathe anymore. Then I would calm down and realize that I was where I was supposed to be and doing what I was supposed to be doing and just like the rest of you just put everything else aside and put one foot in front of the other and carry on. My prayer for Jan was that she would find peace and comfort and when the time came she found what I had been praying for. God does hear and answer our prayers but in his time and not ours. It is just hard to accept that He not you is in control. When her time came I was here with her alone and I just new that it was supposed to be that way. The hospice nurse was on her way but she passed before the nurse arrived. Her journey has ended but God is still here comforting me and my family as we begin to pick up the pieces and continue our journey without her. God Bless you all and know HE will comfort you on you journey no matter how long it takes. Bruce
bak--it's not that your expression of feelings bothers me--this is the right place to do that. Believe me, I understand how stressful this situation is--you and I are the same age and I think the younger this disease hits, the harder it is to cope with. I see the issue as being, how long can your (or anyone's) body hold up under the intense stress level? We all know about the studies that show dementia caregivers die, or at least, become seriously ill, sooner than caregivers for any other condition. Consider this--maybe you think he's not ready for placement, but to save YOUR health, perhaps you should consider it? At least a respite stay in a facility--perhaps a week or two--to let you test the waters and get a break. Have you discussed this with his doctor, as well as yours? I would.
jang--I did a lot of old posts on Steve being kicked out of daycare. It's a good thing I had read the book "A Curious Kind of Widow" before it happened. It was written by a woman whose husband had EOAD and the same thing was described in it--otherwise, I would have been completely blindsided!
Marilyn's point about the tremendous stress that care givers are under proved true in my case. I had done everything I could to keep myself in some sort of sanity, but after DH's death, found that it took a major illness to simply stop me in my tracks. My husband died in Feb., and it still doesn't take much to upset my equilibrium. I'm sure that this will improve as time goes by, but I don't think that I will ever be the same. The point I'm trying to make is that care givers pay a high personal price for their steadfast care of their mates and should be encouraged to use any means they can along the way to protect, nourish and care for themselves. I've seen how our leader Joan came up with some very good and innovative ideas when she had her shoulder surgery. Ditto, Divvi makes things work. As for afterwards, Mary*, Bluedaze* and lmohr* come to mind, but the list could go on forever: Betty*, Sandi*.... Bless this site for the help we give each other.
Somehow, Mary, I don't think any of us will ever be the same again. After being a caregiver, there will probably come placement which seems from what I read and hear to bring a ton of it's own horrendous challenges. Then the ultimate loss. I am only in the caregiving part and have been for almost 10 years. I don't think I will ever be the same again.