I need your comfort today dear friends, I am so hurting.
You know, how your heart hurts, when you see THEIR pain, and get beyond your own?
Oh God, last night was the single most hurt in my heart of my whole life.
DH got upset because I got short with him , he cannot use the tv clicker properly anymore and I have to keep going back in to the room to download the programs that he has canceled. I went in and he was sobbing on the bed, so upset. saying I just won't watch it anymore.
I held him, he can handle a hug briefly and then pushes me away, this is a symptom from a few months ago. He cannot handle cuddling.
I comforted him as much as I could, and told him I would never get mad at him again. Honestly I think he was also just realizing how ill he is. This, from a man that NEVER cried ever even when his Mom died. This, from a man that was a tunnel rat in Vietnam, and his whole platoon got wiped out while he was on sick leave.
Oh I know that it was not just me that set him off, so I am not totally feeling guilty. It is just that he was curled up inside himself, like a little boy that was being punished.I asked him if he was worried about his illness, and he said yes.
HOW OH HOW CAN WE NOT JUST FALL APART AND DIE OF PERSONAL PAIN FROM THESE THINGS.???????? Is getting some happy pills for ME the only way to do it?? I have held off on that, as until these crises come up I have been doing well.
Thanks for listening, and how I also hurt for all of you.
I cannot believe you wrote this today. It is almost exactly what happened with us last night, only I did not handle it very sympathetically.
Don't feel guilty about being snapping at him - every single one of us here has done it more than once, twice, or a million times. Holding and comforting him was the kindest thing you could have done. I don't care how strong they were before AD, they cry like babies when they get the disease, because, in actuality, they are regressing to babies -http://www.thealzheimerspouse.com/Ourspousesourchildren.htm
To answer your question about how not to fall apart from the pain of all of it - I think time, acceptance, building walls around your heart, and taking an anti-depressant - all these seemed to help me.
I wish I had been as nice as you during our incident. I was exhausted, and I am sick. My recurring sinus infection, which always flares up when I run myself ragged, is back - My head feels like a bowling ball, I am dizzy, and feel miserable. I still had to work all day yesterday on my scarf website, a million household things, and wait on Sid as he sat glued to his lounger. He did literally NOTHING but watch TV all day. Got up to go to the bathroom. By 11:00 PM, I left the den, and started to shut down the computer and get ready for bed. He called me back into the den to record Jay Leno. I snapped. I tramped back into the den with my heavy head hanging to one side, yelling at him to look at the damn instructions that I wrote down, all the while yelling that I do everything and he does nothing, and that I was SICK and wanted to go to bed. I pressed the few buttons on the remote to record the program, turned around, and he's furious at me.............telling me I never do anything for him, and I'm always yelling at him when he asks me to do something (absolutely not true), and he's crying. Unlike you, I did not comfort him. I stormed off and went to bed.
As expected, when he woke up this morning, he was still furious at me, but had no idea why. He asked me what I did to make him so mad.
I tell you this to make sure you understand you are not alone. We all share your experience and pain. Except that I guess I built the walls around my heart so high, that I'm not much into comforting him as much as I should.
In the first 2 yrs of his illness I was constantly short with my hb. I was in denial that he had a progressive brain disease. We were going to get him better :( .... the stress, frustration & arguments were thru the roof. A follow-up CT scan showing further atrophy literally dropped me into reality & I finally accepted what was. I still get so frustrated & I'm short with him sometimes, but nothing like I was.
Coco - I have no patience never did have much I guess I was too pampered by family and then dh after marriage. I snap at him and then feel so much regret. He is mostly docile and that makes me feel even worse. You're not alone in this awful journey. Forgive yourself for being human and hurting like all of us here at Joan's.
Coco, one of the most painful things I have experienced since Gord's passing is my memories of being angry and annoyed with him. I try so hard to remember the times I was kind and loving but sadly, in the 3 weeks since he died, the bad memories keep moving in. We all get impatient. It is a journey of unfathomable pain and I hope and pray with all my heart that there were times I was kind and tender like you.
it does take time to adjust to the incessant demands of AD caregiving. and yes we all lose it and usually regret the painful outbursts directed at the inflicter. we try to reason thru the saying -thought processes are 'broken' and dont 'register' , but in the longrun we tend to lose patience and get stressed out over having to repeat on a constant basis, and basically take over TWO lives. hard enough to run our own life, much less our spouses as well. how can we not get upset over the extra added burdens? its normal to say things in the heat of the moment, but as good people we want to be able to forgive the bad times we put them and ourselves thru. nobody is a saint and its normal to have emotions both good and bad. trying to control them is hard and as time progresses it does come easier. dont beat yourself up, just remind yourself to try to improve when things get heated.
Coco..you made tears come to my eyes. We all have so much to carry it does things to us and our minds. We do our best and that is all anyone can ask. How can any of us keep from being cross or getting mad?..It is so difficult.
Judith,
I put your dream in the nightmare thread from last year and brought it to the top. It is very appropriate for that thread.
thanks for all your words. strange Joan how we had the same experience.
I am not 100% certain he was just upset at me, it seemed like he was realizing his disease. THAT is what really hurt, maybe I am just a softy (sometimes), but it just crushed me to hear him cry, I have never seen it before. And yes, he did seem child like with his "Well I just won't watch it anymore comment"
To see a grown man cry, as the saying goes. To see the hopelessness, and loss, and the letting down of the "Oh I am ok " defenses, and to cry.
I just don't know how I can handle seeing that. I seem to have had the walls up for a couple of months now, but that just pushed me over.
I am not a Mother, but maybe, it is something like when you see your child really really hurting.
He seems ok today, and I have vowed to just let him mess up the channels as much as he wants, and I will fix it. What else can I do? Tv is all he seems to have these days. One Hawaiian guy told me, that DH is not watching the tv, but the tv is watching him.
Oh gosh the same happened here last night. DH can't work out the diff between the TV and DVD remote..gets so frustrated he nearly throws the controls at the TV. After so many times of trying to explain and help him I shouted out him,"come on, you can do this"..."I can't, oh, just get a gun and shoot me " he said. Then goes very quiet and falls asleep in the chair, I look at him and feel so sad and guilty for being so short with him...some days are just too much, by evening time I'm worn out. Reading jang* 's post...I will remember that and try harder not to lose it..and remember he can't help it..
P.S. just had to add this...here I am writing thos post, Dh and I had been arguing about his driving and giving it up. His Dr had written to the traffic dept to have his license taken off him...I told him he has to accept it...he said "he has, so long as he doesn't have to give me up, because without me, he is nothing"...made me cry, how sweet was that!
I just read your comments again, and realized I had missed alot.
Jang thank you so much for sharing that, your honesty touched my heart. I am glad Gord is not suffering now, and I just know, he loved you so much and knew you did your best.
Judith KB I am glad you could sense my pain, my pain for him. It is heart wrenching, oh what a true saying that is.
Divvi true words yes. It is so hard to just manage our own lives, and now we have to do so much. May God give us the strength to go on, and still be able to smile
GailN thank you for the words to be gentle to myself, and it would be easier if I was more gentle to him too.
flo39 if you were pampered in the past, this would make it even harder to bear. I truly hope you manage to find some way to still get a little of that pampering.
Wow Julia, like me and Joan, this happened to you. It must be pretty common. oh how sad to say the get the gun and shoot me. Oh God how sad, I am so sorry so so sorry.
And once again Joan, oh dear, yes we all work so %%@@**!! hard to survive now, I mean, I worked hard before, but this is almost over the top. This week I have taken the market I participate in off, I would like the money but I am simply too exhausted.
I hope your sinus infection goes away real soon Joan, poor thing.
Oh yes everyone, how we hate this disease, IT IS SO UGLY!
I got a massage this morning, while he waited in the car. My heart is not hurting as bad, and one can only bear so much pain.
Coco: Just dropping in here. Yes, please get some happy pills if you really did mean that. I'm gently, often kind, and truly caring. This experience has found me drunk and sleeping in the street. (I'm not the big drinker) , its found me deeply despondent and unresponsive. The happy pills as you call them, has moderated my deep, deep sadness and allowed me to be better at caregiving. It's not just the falling off the cliff times that we need them, the right anti-depressants can work in the backround and keep me smoother day-in and day-out. I look at it as we are doing this alone and a little help from modern medicine should at least be tried. If we don't like the effect, we can stop. These meds are not addictive.
My wife is very sweet, all the time. This is a blessing and not so. When I fall off the shelf and show anger or frustration I've learned to suddenly say something funny to break the "dark cycle". I find with her short memory my BJ can suddenly shift to the new moment and in a way I've rescued my self. I follow that with a little reassurance and we've moved pass my short coming.
I'm sorry if this is not to your point. Just trying to help as you all have helped me.
I am really falling apart tonight. I wish I could have October back again. I wish that as I got ready to take him to respite, something had warned me and I could have changed my mind. I wish when we were sitting while I was signing papers and he said," Let's get out of here." Oh God, I wish I had taken him and run. I wish I had him back.
Jang...oh my...I feel the pain in your post. Hugs and more hugs. I know many of us often think and even sometimes say..."Oh..please let this end". We get so tired and stressed and knowing that the end will come we just want to give it a push...but, like you, when the end comes most of us will look back and say..."Oh, if he or she were only here with me I could handle it" because the hurt from losing a love one is so great. Things will get better for you, but at this time it is a big hug that you need,words won't help much.
OH jang oh I wish I could be there to just hug you, or just be there....
Today as I heard dh shaking his jar of crackers and nuts to mix them up, when I heard that familiar sound, I realized, I would never hear that again if he was gone, and I would miss it.
Sweet jang, you could only do what you thought was best, we are imperfect beings are we not, trying to learn?
Much love to you, please hang on.
Soolow, I am so glad you are here too. you know that acceptance, though of course I lose it at times, there is that time that I remember, shortly ago, that it was truly do or die, and that I had decided to do.
I have really fought taking the happy pills, though my sister on the mainland keeps telling me to try. I do not have medical insurance, perhaps, when we go to the VA next month for his checkup, I will consult and see what his Doctor says.
You guys are a lifeline, you know I keep thinking this-that there is so much falseness and danger out there in the world, and that we are real, who else would want to be here? Snake oil salesmen would not do well.
Hang on jang ok, let us know if we can do anything.
Thank you Judith and Coco. I can't cry in front of anybody although I certainly did at the funeral. It is good to know that I can sit here and cry and tell you all how I am feeling. That rope is good Coco. I am sure there are a lot of us who need it.
jang - it was his time. I believe with all my heart even if you had taken him back home, if it was his time, he still would have gone. Most important - you can't change anything now. You have got to forgive yourself for anything you believe you did wrong and move on. Gord would not wanting you beating yourself up over it. Give yourself a BIG hug for doing a the best job you could do for him.
Coco - can you simplify the remotes? For those with DVD players hooked up to the TV, can you disconnect so there is only the TV to worry about? If you have satellite I know DISH has a way to block so kids can't change any settings. We have put our DISH on 'pause' while we are here using the cable provided instead. It has a very simple remote which my husband is doing much better with.
It is not hooked up to a DVD., and I did the block thing for the Dish Network. the strange thing is...he has not messed it up all day....has been watching it and not had to have me help him re load. weird.
I did not know, how much I love him I guess. Twisting and bending my heart when he cried.
Acceptance comes and goes. I call it the thousand steps to acceptance. There is always a truer form inside the one we see and we take steps into it through adversity.
I was sitting here trying to understand how some of our lifetime friends became so fiercely alienated by Dianne becoming sick when I read this thread which Coco started.
I broke our toilet in a fit. I smashed one of my paintings. I have picked up my wife and literally dragged her yelling and fighting (out of the flooded kitchen so I could start damage control for instance). I have yelled terrible things to her like "Do you want to go into a nursing home!".
In that platoon as a tunnel rat in Vietnam, those guys cussed and swore and pushed and yelled at each other in almost the same ways as they forged into a team. To the outside it would have looked adversarial. But you would have to look deeper to understand.
It's very similar here.
By fighting through the current boundries of our comfort zones (that's what it is) and break through to do more whatever gesticulations or saint vitus dance we may be doing - we are actually breaking through and making ourselves form more acceptance inside. We may hate it. That's sane. But in our own ugly ways (judged by us) and by the virtue of our fortitude (judged by those that love us) - we continue to stand our ground and continue to watch over and deal with the dragons (issues) that arise.
I have explained to those that love me when I am crawling that I will be getting back up again. It's the nature of the experience that there is a rhythm to our stronger and weaker periods. And there are so many variables that each has different battles in this. Too many to list. Perception of loss, and anger at not being allowed to feel for ourselves are two.
In summary while I think of all the bad things I've done, those around me are in awe of what I give. Unusually for me, I forgive my own weaknesses here more readily than elsewhere. Some part of me gets that it really is tough slogging to go through and we have to 'get' that. We are going to mess up at times and badly at times.
When that happens what would be best is to cower on the floor and give up permanently.
What we do instead is get up and face it again.
Coco expresses that a snake oil salesman would not have an easy time on this board. You got that right.
We are watching like on live TV, our lives shatter in slow motion before us. Do not underestimate it's power by pretending to yourself that will not bring you to your knees at times. Watch what it does to some of those that used to be around you and realize that the despise we feel is part of us doing what they can't. But the truth is this challenge was too much for them (up till now at least).
This is a spiritual journey where the blowtorch of hardship strips away pretence and leaves truths. One of those truths is that only worthy human beings fight everything trying to stand by their mates. Those with an asterik must accept that in their hearts to take another step. We miss them; but, if we could be allowed to feel the warm glow that would come from them - it would be a big help in accepting and opening our hearts to the remaining time we ourselves have been given.
MOVE IT OUT SOLDIER! WHAT ARE YOU ASLEEP? MOVE IT! MOVE IT! MOVE IT!
(hee-hee-hee)
At every moment we think we understand, there is more to understand. Coco's husband has felt terrible guilt all his life that he wasn't with his platoon that day. AD will eventually relieve him of that while taking things away it will accidentally take that guilt away too.
Life is very complicated and things would go better if people spent less time touching themselves and more time facing the truths and working out what that means. Everyone is welcome to their own beliefs and opinions. In life there is some harmony in reaping what we sow. Some get away with murder, but generally it has it's way.
Those that speak of faith will have their faith tested. And those that speak of nature will have their nature tested. This experience is a brute and very, very few will get through without being brought down at times.
There is an axiom of truth about experience that jugglers learn. They have a saying. "If you're juggling and you think about something else - you're not juggling anymore."
We are all travellers on a sea of mysteries and it's no suprise whatsoever that IPad's and certainty have such premium valuations. Nothing changes that we have our time until we don't anymore. It's one of time's little jokes that so many stand around waiting for something to happen to them which is a waste of time. The only thing missing is that little drum roll. Dud-doom-boom.
jang, I don’t know what you believe (in God) & I know that we are not supposed to talk about that here), but I just want to say that I agree with Charlotte. Sweetie, it was just his time. No matter what you would have done differently he still would have passed. Please don’t feel guilty; it will only make you sick. I know you miss him, but take comfort in the fact that he is now at peace. Like Charlotte said, Gord would not want you to beat yourself up with guilt. I too wish I could just give you a big hug.
jang* your pain is palpible thru your post. i am so very sorry. like the others say its important that you now try to find peace for yourself. its not uncommon that after a death we all question our actions and the 'whatif's' that could have transpired to change the outcome. i know there is really nothing anyone can say to relieve your pain but know that you have many friends here who are sending you support and hugs to help you get thru this time. divvi
Please know that you did the best you could do and that is all we can ask of ourselves.
Take time to grieve and let all the guilt feelings go away. As bleak as things look, there is the promise of a future...not the future we planned or wished for, but a future nonetheless.
As I sip my first cup, I would like to make a comment, Wolf I hope you are reading this.
Your post got in, and your comment about my husbands guilt about his platoon meant so much, thank you. You know, when you ask him about Vietnam, he always just says he needed to be there to be with his cousins , and that it did not cause him PTSD. His big comment in life is always, every day is a good day.
And when I saw him cry the other day, I felt like that had been taken away from him and it was almost too much to bear. It was not really caused by my grouching at him, it was a trigger that made him "see"
Thank God he seems to have forgotten, and is back to his "usual" self. I on the other hand will not forget that pain for both of us.
At the urging of a family member that does love him I have made an appt. with his mental health doctor at the VA, for December. We have never explored the trauma side of his life, and even if it does not mean a better class of benefits for him, (he is on the bottom rung of VA benefits,), it is something we are going to do.
however I am hoping that somehow this will bring his medical up to a better status, the guy deserves #1 care.
and yes Wolf, the stages of acceptance, the next step, I have seen this with this disease, so so much more than "regular" life.
As I write, he lays in bed, and moans little sad moans, and sleeps in which he never did before. He was the guy that was up irritatingly early and up and at his projects.
I hope I do not have to take meds to manage all this, but if so, it is so. Sometimes the hurt is unbearable.
Coco, I take meds to help manage this. My doctor offered me more. I said no. She doesn't know how I'm handling it so well. I don't know either. But I am. So far. When, and if, the toileting issues begin again, I don't know how long I would handle that. If the paranoia starts again, I don't know how I would handle that. Right now it's constant interruption. I'm trying to get ready for Thanksgiving and in the middle of my trying to take dishes out of cabinets to be put in the dishwasher and then trying to fill my crockpot so we have dinner tonight, he wants me to come downstairs because he needed something, right then. That's when I have to have patience. It isn't always easy.
As for the remote. It's a constant. Every day, many times a day and evening, I have to do something with that remote. I've found that the simplest thing for me to do is to record movies that come on at times when he isn't watching and then when he's ready to watch TV I turn on the movie. That way there are no commercials (which tends to make him change the channel and everything gets "screwed up") to interrupt the movie and he's content for two hours. Of course, I had to pay extra to my cable company to get these movies, but it's worth it, and besides we don't go out to movies anymore so I justify the extra expense.
My husband now talks, just a little, about what's happening to him. I experienced something a while ago that made me feel so sad for him. He was dreaming and I couldn't wake him. He was calling out to me. When he finally awoke, he told me he was dreaming about "that thing going on inside his head." That was the first time he mentioned it to me. It was heartbreaking.
Jang*, my heart goes out to you, I don't know what else to say, just that your Dh is at peace now, I pray that in time you too will find the peace you need to go on. Hugs Julia
I just want to express my appreciation for all your comments and experiences. Did I really think I was the only one who loses my "cool" more often then not. I am just now realizing that I am trying to get him to just try harder. You can remember if you only just try!!!! Foolishness on my part. Acceptance is coming but slowly. Is my husband the only one who messes up the remote; wants everything immediately; has no patience with commercials etc. Thanks to all of you for sharing and letting us know we are in the same situation. It is comforting to know so many others understand.
I lost it today and should not have. I washed the sheets today -bed and the ones on our chairs (I can do laundry while I work). Hb came over to get the sheets and make the bed. When I got home, he had put one sheet on the chair, the fitted sheet on the bed, somehow dug through drawers and found a top sheet and pillow cases to finish the bed, then put the clean ones he brought back in the dirty clothes. He has no idea why he did what he did, why one sheet in the basket was clean and the rest were dirty. I will tolerate the top sheet he put on for now. I use a king top sheet cause queens are too short sideways with two people in bed.
Oh Charlotte, Isn’t it strange what just sets us off? The other evening my DH finished his ice cream & set the dish on the floor (we were in the living room watching TV) & I got up & asked him where the dish was (I didn’t see where he actually put it). Well he had no idea what I was talking about, so I asked him a few more times & then I just “lost it”! How could he not know what I was asking him??? (DUH!). I yelled at him & then he got scared. It was one of those awful situations where I just wanted to take back everything I said (& yelled). I think that I try so hard to be calm most of the time, that it just builds up inside & then when I least expect it I just “BLOW”. (Sound familiar anyone?)
Oh ElaineH yes it does sound familiar. Sunday night I asked DH to get ready for bed. I asked three times, he then said, I don't understand what you want. I almost started to blow, then I calmed myself down and explained it again. That time he got it. So many times I have yelled at him for no good reason :(
Have you noticed how many of us seem to be experincing the same type of behavior from our spouses recently? It seems so many of them are at the same basic stage at the same time.
My dh can't follow any direction at any given time. It is really amazing that something so simple as "could you put the milk carton back in the refer" not be understood. He looks so hurt and then gets this funny grin on his face that is so awful and unreal I can hardly stand to look at him, that I try and not correct him about anything. I am trying so hard to just be kind to him and it is so diffiuclt. Also, he does this funny little laugh, only it is not his normal laugh....every day it is just one more little thing going wrong.
So so familiar , all of it. It sounds like many of us have our mates at stage 5, somewhere I read this is the longest lasting stage.
And ElaineH that is what I did the other day when he kept messing up the tv clicker, and did not quite yell, but close. I felt like such a ...poohead, ...to say it nicely.
Yesterday my hope of having him stay a few nights with a cousin were dashed, it fell through. Oh well. I am thinking, this sounds weird maybe, of getting a hotel room in Kona for a couple of nights, play the tourist etc. He can simply stay in the room while I am out and about. I think it will be ok, easier than home where there are so many things for him to get in trouble. I need a break....(sounds like our mantra..)
Waiting for a wee check from the "homeland" so I can do something fun. Hope that does not fall through too!
I think the very worst thing in this process, besides them, is the abandoning of family and friends. I know now, after the things that have happened this year, that I would be more caring if my loved ones were going through things, and at least pick up the phone to listen to them if nothing else.
Coco, are you sure he will STAY in the room? If you are, then go for it. My DH is so clingy that I could never leave him alone. He even got antsy last week when he stayed with our daughter while I got our van worked on. She offered to let him stay with her tomorrow while I go shopping, so I am going to take her up on that & hopefully I can get a few hours to myself. Let us know if you get to go on your sorta break! I also think that I would at least try to be more caring & helpful If my friends were going through something like this.
I am lucky I guess....though I am not comfortable going out and leaving him home alone, he does not mind. The longest I do it for is to go down to the market for veges, perhaps 20 minutes or so. he can get in alot of trouble in a short time, leaving water on, flooding toilet, and God forbid not a fire. But, he is ok with being alone for a short time.
Yes he does that looking for me thing too, we are like their lifeline aren't we?
My best friend from Canada and her husband are coming for 6 weeks!!..they have a little vacation home next door to us. I hope I can handle the platitudes and her husbands irritableness...since I saw them a year ago I feel like I have toughened up quite a bit.
I just need to be straight, and if I cannot handle them, tell them to leave me alone.
though she has been my best friend for over 40 years, she is the WORST one for platitudes, and trying to tell me how to feel. I mean, after all, her Mom is in a home with Dementia, (she sees her once a month), so she KNOWS HOW I FEEL...
I know, it is Thanksgiving, and I wish I was not so down. Coming here to grab the rope, and to stem the tears.
Friends arrived next door, and I don't know it must be me, I just can't take the platitudes. My best friend of long ago, telling me it is "all good", and "it is what it is", ( as she recovers from her fun Europe trip and prepares for their 7 week Hawaii vacation/
I asked her, exactly how can it be all good? SHe looked at my DH and said, well look he looks fine to me.
I walked home, and felt like dying. How can she say that, without acknowledging his illness, his drinking dye, his crying, his failing mind and body?
To me it sounded like, quit whining it is not that bad.
I must be asking too much to just want her to let me feel the pain the way I need to. I mean, I was not complaining, I was telling her about my new thing to look for silver lining in everything, and I am working my butt off everyday getting ready for my market, to pay the bills.
It must be me, I am isolating myself as I just cannot relate to anyone. I give thanks today yes I do, and I cry.I am sorry to bring anyone down I really feel like I just have you guys here.
That's it. You said it and almost everybody does it. "I am isolating myself as I just cannot relate to anyone."
Some of that is real and some of that is fair; but, much of that is us.
I have three flavours. Open up completely to my reality. Tell me you can't honestly. Or you are out.
The real fight has almost nothing to do with them. The real fight is to keep struggling to accept inside what is happening and outside what we must do. And the real enemy is that that is so incredibly hard because Alzheimer's is such a brutal disease.
In almost every case facing this is the hardest thing almost everyone has had to do in their life and by a distance.
The real information on the AS board is the measurement of how hard that is by the comparison of our experiences and feelings to those of the others in the set of people who have this, joined this board, and post (many do not post but read). All struggle through it. And all struggle with the acceptance of it which I would rephrase as the empowerment of ourselves.
Let me prove some of this so it's not just words.
A year after our spouses have died which is the one thing that is certain and we look back, it will be good to feel that we struggled as hard as we could to deal with this disease and know that we gave a lot. That has no function in life. You are alive and that is memory.
What does have function which in other words is what still has meaning, is that you are alive. What the disease has done to us is similar enough in all of us. What we have done to ourselves is what will remain.
It's clear almost no one dies from being an Alzheimer's spouse and just as clear from even a small reading through some topics that this is an overpowering experience.
It isn't the flesh that is weak. It's the spirit. Very few enjoy watching an animal being mistreated. And very few have the realization that that is what is happening to us. Bear with me and I will lay the bricks down.
When we see an image of two deer in the wild where one has been ravaged by wolves and is dying, the mate stands by distraught. When we see this image we know immediately all the answers. It is heartwrenching but the remaining deer must accept what has happened and save itself. It can defend it's mate as best it can but the outcome is inevitable and so it must choose life. Life is all we have. Life has always been a limited time.
The test was never about us surviving this. You will. The test is whether we can open our hearts enough to the spirit of life in such adversity and, if so, fight for our lives and our time. Some might call that religion and some might call that nature; but, I consider phraseology pedantic because the thing is before us in and of itself before we start deciding what it means or doesn't.
Do you wish the remaining deer well? Do you wish yourself well? And what is it you're doing to make that happen?
Wolf, that's unfair. We're up to our necks in one of the hardest trials life bestows on anyone. Yes, so am I. But I do know without fear of mistake that the real struggle isn't taking care of my wife - the real struggle is not losing my spirit because life became terribly hard. If that's not true then we're just animals.
If life has meaning beyond that, then that meaning is within you. We can say what we like, but that meaning is chosen by you. It's what you fight for. It defines your existence. And each of us will live in what that is.
I have to accept what I am doing without worrying to much about how much I scream or cry. And that just as I have to live with both my parent's gone and some of my friends gone, I have to live with my wife gone and to be honest none of that has anything to do with them. All of it is about what I believe and what I fight to become. Spirit.
I have to accept what I am doing without worrying to much about how much I scream or cry
quote above: Wolf
yes, that is the one that really stood out to me today. And Wolf, I understand each one of your words.
I am not going to tell my best friend to stop with the platitudes, I am simply, going to keep it inside myself, this is MY journey and she will NEVER get it, she DOES NOT WANT TO. Why should I force it on her, or anyone?
That screaming and crying part is the "new" thing in my life, and all to do with this disease. THAT is something they don't get, oh yes they say you have had challenges before, ...but...this is so so so different.
I know it is not their fault, any of it, and even their shallowness. It is not their fault that I am so damn lonely and alone. And I don't want their form of comfort, which is to_
BUCK UP! EVERYONE HAS TROUBLES! IT COULD BE WORSE! and my favorite, -YOU HAVE TO TAKE CARE OF YOURSELF..(while they make me feel worse.
That is why I love it here, you guys help so much.
There was only one person that would listen to me last year when he was first diagnosed, last year as she was dying, of cancer. My sister Dianna, first she would call from Canada and I would listen to each and every one of her experiences, and BELIEVE her, and then, she so graciously listened to each and every one of mine, and BELIEVED me.
I miss my husband, and he knows something is wrong.
I FOUND THIS ON A PLATITUDE BLOG, AND THE I WOULD PREFER STATEMENT IS WHAT I WOULD HOPE FOR...
Sad fact, but life isn’t fair and it takes work. Only those privileged few born with gold spoons in their mouths don’t have to try. Maybe they get platitudes too. But I’ve found, after hearing some of these phrases far too many times and catching myself even saying them, that they just sound hollow. I would prefer someone saying, We’re here to support or help you as a friend and I hope things get better soon. That seems far more genuine.
I’ll leave you with Aldous Huxley’s comment about platitudes: Proverbs are always platitudes until you have personally experienced the truth of them. Proverbs are always platitudes until you have personally experienced the truth of them. Advertisement
Coco--"You have to take care of yourself" is my personal irritant, too. Somehow, even well-meaning people have learned to thoughtlessly repeat this without thinking it through. How the heck do you take care of yourself when you have no time, energy or emotional space to do it? I was fortunate that I had the means (LTC insurance) to get daycare and help in place early in the disease, and still, I was frustrated when people said that to me. What the answer to that dilemma is, I don't know.
Coco - you say she is a friend of many years. You need the friendship and while she is there, maybe you two can come to an agreement. Talk to her or write her a note, but do communicate. find the words to tell her that you know she does not understand your husband's illness. That her platitudes or comments that he seems 'fine' hurt you. Find the words to propose a compromise: you will not talk about your husband's condition if she will refrain from the hurtful platitudes. You need a break from your day in day out life. When I work it is my chance to get a break. For a while I am able to be outside the AD world. It does wonders for your inner being. Hang out with them, talk of only neutral things, let them be around your husband and they may see a little of your reality. Let them learn from experience - if they want to. If as they are around your husband they see him do things that are odd just say something like 'that is normal for him now' and leave it at that.
thanks ladies. Yes Charlotte those are wonderful suggestions, and you know, I don't want our friendship to suffer. I really think keeping in neutral is the key, of course they will then bring it up, but I can steer it away.
They do see his disease it is obvious, but they don't see the whole scope. Likely in the long visit they will have next door they will notice some more. Either way, he is MY life, and I am really going to try to respect him and myself and if that takes isolation sometimes so be it.
As Wolf said, (my translation lol), those times of anger and crying and stress just need to happen, whether anyone understands or agrees with it or not. I am not going to stuff it. My spirit will suffer even more, and by accepting my own grief and not fighting it, I think I will survive even maybe a little bit better. My spirit has suffered, and life has seemed like a cruel joke, and this I cannot go on believing.
Thank you so much mary75, I am learning so much from all of you. I have to get back later when I get home. to Charlotte, with the results of the talk I had with my friend regarding her attitude toward my new life.
not good..it is no wonder we isolate. However I am not blaming her for anything. just that I cannot count on almost anyone to be understanding, there are a couple.
I've found, too, that talking to friends didn't really change their attitude. It's supposed to, especially if they are old friends (I'm thinking of an old nurse friend of mine from training days). Right now, I'm letting it go to work itself out without my help. Disengage, is what I think they call it. I don't know if this works out in the end, or not . But after the battle with Alzheimer's, I have only the energy to protect myself, not educate others.
They may not understand or 'get it', but to let them know their comments hurt, that you want to keep their friendships but there has to be an understanding/boundary: no platitudes and I will not talk about husband's condition. Use the time with them to be out of the AD world as much as possible.
I have some good "listening" friends but I don't tell them all. I edit out things like he pees in the sink even though the toilet is only two steps further away.... but I am so grateful for them and don't want to scare them. I am scared. Wolf how do you know this will not kill us? Last November I had emergency gallbladder surgery... then I knew pain, I thought I was going to die. Now when I see that pair of deer I wonder why should I bother.. I know the end..every day I struggle to find good because I was always the happy-go-lucky one, everyone thought. That poor deer didn't see her mate's death coming, she doesn't even see her own. (here some hunter will probably get her tomorrow) Dying isn't so scary really. Pain is scary, suffering is scary, dying is easy... probably a lot easier than living with this. Life is better? Really. Being chained to the house with someone who sits in front of the tv all the time and who stares blankly at you....and even when you try to make conversation interrupts you to tell you that little Joe on Bonanza is doing this or that. Chained to someone who spent about 10 minutes with his son on Thanksgiving before he went back into his room to watch tv. There's enough pain to go around. I'm still here though ...probably need to quit my pity party and go for a walk.
OH Grendelsma... Reading this, it touches me so. I am so glad to hear what you had to say, as sad as it is.
I have purposely not been posting about this experience with my best friend and her husband staying at their vacation house next door, for a long visit, 6 weeks.
I don't want to whine.....I am trying to take advice,...grow up...chin up? I know they are just in their own worlds too...but they are so stupid and self centered and try to tell me how to feel and act.
The way you put things sums up totally where I am, and so many- most of us.
The deer in the headlights is my darling, he is wide eyed and scared, unless he is watching tv and little Joe. (With the sound off) The husband of my best friend got impatient with dh when he had an episode yesterday, and was rude to him. This , after my man tried to get up from his chair and his legs were shaking, and he could not get his words out right. I cannot stand to have anyone be mean to him, I cannot, because my soul just can't take it. I will tear them up like a mother bear.
THIS is what they don't want to believe, the way that you just described. What I understand from some advice on here is to just not talk about it with them. Sadly, it is hard to talk about anything anymore. And I find myself apologizing to them, for my anger, and my changed ways. It is really hard for them to not know the old Patty, the fun one, the one that they could blame.
Charlotte I did what you said almost to a T...told my girlfriend that we would not talk about it because she does not understand, AND I took full responsibility for my anger and frustration and face it , boring new personality. Maybe she is just too dim Charlotte, but as kind as I said it and as firm and loving as I tried to be,...when I told her how much it was breaking my heart to lose my husband, she just said, "Well I miss him too Patty, you are not the only one" And reminds me a few times a day how much worse it could be.
I JUST WANT A ##!!&&*(** GENUINE HUG, and let me deal with MY grief, STOP TELLING ME HOW TO ACT!!!
I so would love to have the distraction from dementia, but it just seems to pervade everything. And my friend constantly reminds me of "the reason for everything", and others have it worse...REALLY!!! OH I DID NOT KNOW THAT!!!
Life is good. It is what it is. Why do these sayings make me so angry? And the platitudes keep coming.
Otherwise,,,I am happy we had a good day at my market , raking in the dough . My hollowed out gourd Christmas ornaments are really a hit, and the coconut candy.
But I am also so deeply sad. And I really like all you people.
Coco - you tried and that is all you can do. It sounds like she thinks you are asking for her to fix it. Men are like that - you can't just vent to them and then have them hold you, they think they need to fix it. That may be what she is feeling. She just does not get it that you don't want her to fix (although would be great if she could), you just want her to let you talk without her saying anything but maybe a hug.
You have us here, so take the rest one day at a time. Sorry he was rude to your hb - hopefully he will forget it soon.
Coco, We are here anytime you need to "whine". Don't ever think we won't listen. We all have those days, weeks, months... It gets to us all. The lack of someone who understands. So we are here. To love and care. And never judge. Just talk away and we will cry with you.
grendelsma, You are allowed pity parties any time you need one. I think around the holidays are worse. We see other families happy and life good for them. We just want some of that for ourselves.
My DH watches tv with the sound down. But it makes him happy, and glad I can do that for him.