When Brian Wilson released one of the Beachboy's best albums he shortly after listened to the Beatle's Sgt Pepper's album and didn't come out of his room for a year.
The reality that he, his brothers and the other members of the Beachboys were not only hugely popular, they were making the best music of their lives had no bearing on his mind.
He had heard something he deemed was better and having decided that he then shattered his own work and punished himself as unworthy.
One presumes he'd never heard of Muddy Waters as an example of the many musicians he might have chosen as the instrument of instigating his own choices on what meant what.
That is a stunning and reasonably known example of the extent to which we are vulnerable to our own ideas and the degree to which we determine those ideas ourselves.
A closer to home example of this fundamental truth in life might be Coco who recently joined us with her gourds in Hawaii (if I may) but like so many of us is actually looking for the courage and the information on how to go down a path she has already chosen in her heart. We are all doing or have done that. I could have picked Joan or Charlotte or Elaine or Carol or almost anyone here.
Likewise numerous women here have chosen to take on the decision making and finances where that was not previously their role, or men who have taken on the shopping, cooking, and cleaning (and nuturing) where that may not have previously been their role.
I'm not trying to fit people into slots. I'm trying to point out that everyone is in the slot they put themselves in and that almost everyone here has materially changed those prior viewpoints to include new things often it appears without actually noticing. I touch on this when I mention so often that everyone here has demonstrated courage, capability, and success facing serious hardship. Which is deflected by almost everyone because they are closed to new ideas while they are incorporating new ideas.
"Lets go." Those were the last words heard on the tape in the plane that was heading for the white house on 9/11. Some of the passengers decided that either the terrorists were going down or they all were, but that plane was not going where the terrorists wanted.
We empower ourselves and we choose that at every step whatever words are coming out of our mouth or going through our mind. We do not admit we protect our comfort zone any more than we admit that we are changing that zone. We resist change by our nature regardless of advantages in the same way that we resist that Google or Windows Explorer might change their appearance without remembering we resisted the change we are now defending because we do not want change whatever the advantages.
I have to live on a great deal less than I once did. Transitioning from what I had before to what I have now was completely unwanted and hard to go through. I had the new house for 45 days before we moved in but I never went once because it disgusted me. A short while after being here I had no idea why I felt that way and I opened up to it. I'm the type that leaves no stone noticed unturned and I opened to the advantages of buying things I'm going to use anyway on special and dropping things I don't actually care about. I made it a game and I continue to enjoy playing it. I have a surplus in my account and I feel pretty good about what I can and can't have. Instead of feeling restrained I'm hunting things I might actually be interested in.
I'm alone for two weeks now. My wife is in a respite center. I've done this twice for the week but that's actually more 4 days and it's been ok. This is 13 days in a row and is new. I'm having fun. My stress levels have dropped away. I feel for my wife, but I can't save her. What I can do is either make my own life suffer because there are serious hardships in it. Or look for some fun. In other words, since I always choose what I do just like everybody else does, I get to watch now what I have actually chosen as opposed to the words that come out of my mouth or the ideas I had before I entered the real arena.
What I'm watching for is the truth. I've spent many hours thinking about all this when I wasn't screaming or in shock or all the things we go through. I've been brought to my knees, kicked repeatedly, and thrown into the void. Everybody on the board knows what I'm saying with further elaboration. But I'm serious. I know the difference between saying what we should do and starting to do it and how hard that can be given that I am smoking as I type even though I detest it now but am so far powerless. It might be like that. But it isn't. Instead it's the truth. Which is that I've spent so many hours this last year especially thinking about the new life coming and who I am really and what I want and don't want. And my only investment in empowering myself to quit smoking so far is that I feel bad and know I should. In other words I'm not.
With great respect for the suffering we endure and the pain of recently losing our loved one, we are all empowered by our own mindset. The main elements in play for us are the concept of wanting the surviving spouse to go on with a good life (for everyone but ourselves), the feeling that we cannot (despite the powerful evidence of our actions in facing and fighting serious hardship plus the new skills we have had to take on), the guilt (that we survive and they do not which again refutes that the we hope the surviving spouse goes on with a good life), resistance to change (we would like it but are unwilling to do what makes it possible thus preventing), and interia (we have sat down and can't get up).
I could talk about how I feel about all this but it's not that useful and everybody already knows. Instead it is working for me that I learn to let go by doing what I can for my wonderful wife while empowering myself to think and act as though I am already alone so that I can learn how to do it. All the things I listed just above come into play. I believe it's right despite the guilt. I want it desperately which is that I don't want to be desperate in it but knowing I would feel desperate without it. Without what? Without believing in what I'm doing and therefore actually trying to do.
As I explained to one friend while we were playing cards and my wife crawled in looking for things to eat off the carpet. "That is what it is. This card game is about us. Now play a card."
Or the answer that came to my mind when I asked God. "I gave you this life to live. Try and guess what I want you to do."
You stop talking and start learning how to believe. There is no other way for most of us. We empower ourselves to feel happy, to have fun, to love, and when we learn to do that in real adversity; I see that as the spirit of life. Which isn't so much a struggle by it's nature as allowing a freedom. To feel good.
Perhaps do a kindness for someone and try and feel good about it. And then do an equal kindness for yourself and try and feel good about it. After all, it is only you that treats yourself differently. And what that strongly implies is that you don't actually believe what you say.
Wolf...love your post. Next Wed. I will have my first homecare person here at 9:00 am to give me the first of my scheduled 4 hours of freedom which will happen every other Wed. I know now, after reading your post I am going to have a great time, alone doing my girly stuff. I might even get my nails done. Haven't done that in 4 years. Heck, I might even buy a new pair of shoes and try them on in the store. Usually, I just buy them and hope they fit when I get them home.
Also, I am going to forget the look my dh had on his face when I told him of my plans to have freedom every other Weds. for 4 hours. He looked like a small child that was told the hated baby sitter was coming on Wed. I earned this, I deserve this and I am looking forward to it.
Good for you JudithKB...go for it...enjoy your time for you. I would give anything to get some time off...my DD drives an hour down to be with him when she can, but I worry it's a burden for her too. I'm going to just have to do it one day, and let a homecare person in and not look back!
It really is OK to put yourself first on occasion. By all means--get your nails done! and get a pedicure! Have you sat in that chair with your feet in warm churning water? Do it, do it, do it. And next Wed get a facial. Wolf, get a massage, get an old-fashioned barber's shave with a warm towel on your face. And you can get a pedicure, too. Men come into our local salon and even get their hair colored--but we keep it a secret.
There’s a funny thing about us humans. When it comes to our own self value, we don’t see the strength we develop. We ignore the knowledge we have earned with our will and our tears. We devalue our accomplishments, and deny our own needs for fresh air, sunshine, laughter, and fun. We lie to ourselves. We seem, always, to see the negative. Being called to the Principal’s Office must be because of something bad, not because Dad wanted to tell me I had a new baby brother. The rest of the kids would find out at lunchtime and he wanted me not to wait until after school to find out. The Boss wants to see us. Must be something gone wrong with the latest project—couldn’t possibly be that we’re getting an award. We do this to ourselves all the time, everyday.
We became Caregiver’s through a two-fold way. Designated by the family—who else but the spouse should take the job? And then we chose to accept it. We have no clue what it will mean to Caregive our spouse with Alz or its cousins. We learn. We throw ourselves into doing the very best job of it. No one will ever be able to fault us for the care we provide.
We soon find out how demanding and devastating the Dementias can be. We learn how to do all the jobs our LO did in the household, and we do them. We learn to be nurse, counselor, therapist, pharmacist---Dr.-Lawyer—Indian Chief. And yet we hold to our beliefs that we aren’t doing the job well enough. We must put our LO first, last, and always. No one can do this as well as we can.
Wolf is correct, that all this is within us. We have a set goal—to see our LOs through this in dignity and with love, and to survive it and make a good life after.
We are, by our own choices, powerful advocates for our LOs. We need to do the same for ourselves. We need to acknowledge that we are smart, strong, and deserving of respite. We are doing a Hellish job. . . .and doing it well. We need to treat ourselves as the heroes we are, with respect and dignity. Yet, we doubt ourselves endlessly. We undermine ourselves when we do that. We have excellent examples to look to when we need a boost. Just go to the members on the Widows and Widowers Thread. Sandi*, NancyB*,Texas Joe* and Joyce43*, bluedaze*, DKing*, Gourdchipper*, and so many others. They have done the job and are now building their new lives AFTER. Further, many of them, stay in touch, sharing their knowledge and experience, perhaps making our way just a bit easier.
Instead of knocking yourself down today, give yourself a pat-on-the-back.
Such a range of emotions. I wonder if you guys feel like this...that...of course there have been problems hurts and issues in the past, but this, this has such a different feel, this spouse with dementia, in our care, our responsibility.
I don't know how to say it...when I tried to describe it to my friend she kind of rolled her eyes like I thought I was "more hurt"
No no dear friend, it is the "feeling" of this hurt. And coming out the other side, when I feel good, is different now too.
She "made me" go to Yoga class with her today, it is not really my thing but I have to admit the stretching felt good. My darling was ok for the brief time , my friends husband hung out with him, ( not too happy about that 2 hours I think) When I got home my darling came out the door so excited to see me, like I had been gone so long!
Anyway, as we were doing the final breathing and relaxing part, I could feel all this ANGER swirling around in my chest, and yes, I have been angry.
Wolf, your comment about your friend saying "it is what it is" about your wife looking for food, well, that may have sent me OVER THE TOP!! I hope I can get to where things don't get to me quite as much. I am...getting better at it. And learning, that when people don't even try to understand, just DO NOT talk to them about it. That really helps.
Wolf, enjoy the moments, so good you are not harboring guilt over it. Your beautiful red head knows how much you love her, of that I am sure. (I think...I read...she is a redhead)
I mean...WHAT would you respond to my girlfriend, (of 42 years), saying these things, please I would like to know...
1. (friend to me) Well, Patty, when he (dh), does weird things or mixes something up just LAUGH , see the funny side in it.
(my response, deep inside...HOW $#@@@ MEAN!!! Dh would be SO HURT IF I DID THAT. And, I don't find it funny when he drinks clothes dye or pees on the floor. Ok, that is MY response. I did not say this to her)
2. I want to buy a new bed for him, and we were making calls to find prices. (He sleeps in his own bed, tosses and turns and moans too much for me.) Friend said, well don't worry about spending and getting him a real quality one, he may not be around that long anyway.
(Me , to her) He could live for many more years. He spends alot of time in bed and I want him cozy.
(Her to me) well you will be crazy and won't be able to handle it. (me to her) I already am crazy, and I am handling it.
(Me, deep inside) I DON"T WANT HIM TO DIE, I know you think it would be best for ME, but it WON'T. He is nowhere near that, and I LOVE HIM.
HOW would you guys handle that?
Wolf yes I am looking for the answers that are best, and learning SO SO MUCH HERE. And, it is so amazing, you people here seem to really care.
FINALLY JUDITH KB ENJOY YOUR TIME!!!! Get a rockin haircut too, a massage, a yoga class?..lol...
Love you guys, you truly are making my life so much better.
Coco---go for it.... I can remember buying 7 different king size beds (yep) at about $1,800 each in order to try to get my dw comfortable....I bought Serta, Sealey, Simmons, Sleep number, etc in an effort to keep her comfortable. Remember the story about the princess and the pea??? Nothing was comfortable for her, and she was quiet vocal about it. I spent the better part of a year moving beds from one room to another, getting memory foam beds, buying pillowtops, new beds, and my regret was that king size beds are not easy to move by yourself. Ironically, my kids now own king size beds, and I ended up buying new queen size (easier to carry), and in the end, my dw prefered an old queen size bed that we had bought many years ago. It was a huge expense for us, and the solution was sitting in front of me the whole time....but, in my heart, I wanted her to be comfortable at all costs, and it was worth the effort/. Yes Coco, guys do have feelings....and yes real men do cry. The pain is a bit different for a man, because we cry alone, hidden from view, and are not allowed to share our grief with others....No man wants to see another grown man cry, and women think that a man who cries is just a stupid weak idiot.... Yep....I am a stupid weak idiot because I am still crying.
Phranque--you are wrong about what women think about a man who cries. Just this morning, I remembered that I saw a man cry at a support group meeting. I thought it was endearing--it showed he really had deep sadness about what was happening to his wife--made me relate to him more than the other guys who never show much emotion.
coco i think you have the answer to her questions and comments. you just gave them. tell he exactly what you told us. honesty if she is a real friend will see you thru this. maybe too much emphasis is being placed on how you take her replies knowing well inside how you feel? it shouldnt bother you as much if you know your own convictions. people say things meaning how THEY would deal with the situation not always as a suggestion i find. dig a bit deeper into her responses and try to imagine the response how this would be for HER under the conflict and not as you should see it. you already have your ideas set on how you cope and i think you are right in your assessments. buy the best mattress for his needs as it may be his only comfort soon. and telling him its all right he makes wrong decisions is ok and you will be there to help him - but also there will be times when laughter may ease the tension and only you know when the time for that is correct. we know here that laughter is a very good antidote to many a conflict here -if this relationship is a strong one, it will last thru thick and thin no matter whats said. i have found that many of the old time friends just dont get my plight as a caregiver and the only thing i have left in common with them is to avoid the role entirely if possible. you get back on the subject of the illness and caregiving you can see them stiffen and feel uncomfortable. unless they are in the trenches or have been nobody can completely understand our feelings. sometimes we have to set the boundaries early on to survive.
phranque, i agree that sometimes seeing the compassion is a plus not a hinderance for many. regardless male or female.
wolf, enjoy glad to hear you are having this respite and time to reflect. good for you
Thank you all....this was the boost I needed today....reading all these words of encouragement. We caregivers ARE a sorry lot at times aren't we? And yet we really are the best! We must hold on to our convictions and know that we are doing what we know in our hearts is best for our spouses....the advice coming from those not "in the trenches" can be spoken, but doesn't have to be heeded, does it? We can choose to ignore these comments and make room in our lives for what we know to be important and necessary for us and our LOs. The most difficult thing for me to do is advocate for myself...I do a wonderful job of advocating for my DH, though.
great thread on being empowered, and I loved all your comments. I need to sharpen up my anger button., anger, something I really never had before. Yes Bella, to look deeper in to my friends answers and see what lies behind, and, to know that if she loves me, that is what is most important.
She is always "killing people off" ever since I knew her, her parents for year after year, (sadly waiting for their money), and now imagining when her husband is gone due to his weight and high blood pressure. Her words are quite callous at times, but, as long as I don't get MAD perhaps I can talk to her about it kindly.
Oh Phranque THANK YOU THANK YOU about the bed information, you are such a pal! I am absolutely determined now to get only the best for him. I was going to buy him a quality twin bed as I don't sleep in the queen with him anymore, but, maybe it would be too small. part of the reason is my friend owns the house next door, their vacation home from Canada, and THEY need a queen. I thought I would get my sweetie a new smaller one, and let them take the queen , for a small fee.
hmm...you see...she really wanted that bed, and when I hedged on the prices for the one I wanted to buy, that is when the "Oh he may not live long comment came up." HA! Sorry dear, he is not going anywhere soon, and in the meantime, he is going to be COZY!!
And Phranque, about the crying thing. The only time I saw D cry was a few weeks ago, he was so frustrated that he could not use the tv clicker and me getting impatient with doing it everytime. He curled up in the bed and said never mind I won't watch it then, and I could hear the tears. Now he is not who he used to be, and I know he is ill, but, that was the single most painful thing to hear, even as hard as my sister taking her last breaths. Phranque, fill that pool, dump it out, and fill it again. Maybe one day it will just be a small pot..and then...a little cup..
And maybe Niagra falls will become a tiny little stream, then dry up and the flowers will fill it in.
EMPOWERMENT!! I CAN DO IT ! They will have to continue to sleep on the blow up mattress until they can use the tons of money they have to buy a good one. Humor , YES!! Those silly neighbours, I am going to giggle over it.
We may be a sorry lot bella, but, what a lovely one too. taking care of our darlings, even if we squawk sometimes. I truly believe, in my good moments, that God sees our efforts, and loves us so, and the angels sing.