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I'll never know
Posted: Tuesday, September 12, 2017 10:49 PM
Joined: 11/18/2016
Posts: 451

 How come everyone's getting what they want and I'm not ? Why is it that what they want is what I've wanted my whole life

But never got

Nor will ever get

Things have changed 

there's no sense now 

spending on frivolous niceties

far too extravagant for my now sheltered lifestyle 

If so, would it be enough then if I were the only one to enjoy such beauty ? All that should matter is me. Giving myself fulfillment regardless of everyone else.Even though there is no one else.

So I force myself to give myself what I've always wanted, like everyone else,my entire life

 There's no twinkle in my eye or  sparkle in my smile because they are gone and what remains is sadness and a sense of nothing making sense What lessons am I to learn of this. What have I done that I do not deserve what others have. Maybe just good health, we can start there. We can even stop there and I'd be ecstatic to have good health. Once in a while. Maybe something curable next time. Now there's nerve damage to my left arm. So that's another do over. That's the fourth. That has to mean something too. 

I cannot give to myself something I've longed for my whole life, for I must take care of my immediate needs, all the time. What do I want, deep in my soul, that I can give myself. What does it really matter.

Moments that I lose my focus and see no purpose, 

I so yearn for a purpose to live. I realize that all I do is do, but nothing quite reaches my heart

So hard to have hope in a hopeless situation sometimes 

Posted: Wednesday, September 13, 2017 7:42 AM
Joined: 5/20/2014
Posts: 4408

What do you want Obrien? I mean other that not having dementia? I ask myself also "what would life be like and how would it be different? What would I be doing that I'm not doing now? Would I really be happy? Would some other problem or issue be consuming me?" Things to ponder...searching from deep within. 

In grad school I was taught to think in terms of solutions but it gets harder and harder when things don't make sense and the grass always looks greener on the other side of this disease wrecking my brain. It is a train wreck on any given day. There has to be something to salvage something that can be saved. One little cell that holds the answer to our purpose. 

Much love to you ((((((Obrien))))))

Posted: Wednesday, September 13, 2017 1:24 PM
Joined: 11/18/2016
Posts: 451

Thank you llee, for those words of encouragement. You always validate my feelings and cheer me on! Normally,I'm on top of things- not gonna let this dementia thing control me or my world. But I've been having a lot of stomach pain lately,  as well as nerve pain, and I'm totally fed-up with doctors and tests. I know I shouldn't complain, some of you are more advanced than I, but I just want to scream from the mountaintops. What comes out of my mouth depends on the day.
Posted: Wednesday, September 13, 2017 4:08 PM
Joined: 11/18/2016
Posts: 451

What is your purpose now, llee? What gives you great happiness? I would be teaching if I weren't at home and at this stage in the game, I wouldn't be happy. My boss would not have made any accomodations for me, so I probably would of had the full load, as in the past. The stress would have been the same, I would of hated it even more. Does that mean I should be grateful for having dementia since because of it , I get to take classes and shop and visit my daughter and nap and and and! I know I am more advanced then some and not as much as others. Our roads begin to branch off and like our personalities, our disease is custom-made, as well. 

I want to travel- I 've always wanted to do the Eat, Pray, Love thing but I stop dreaming when dementia comes back into play. Should I be even thinking about traveling or living abroad now that I have dementia? Do I want to be somewhere else when this gets ugly? Should my wife be alone and without family when that happens? Then again, out of the 4 kids, 1, maybe 2 give a crap- the others don't. I don't even know if disability allows for travel. I liked it more when it was all hypothetical-I don't want to talk about this.

Posted: Wednesday, September 13, 2017 8:06 PM
Joined: 8/6/2015
Posts: 1736

While my LO was alive and needing me I practiced 'disecting' my feelings. What do I need? Why? Can I do it today?  Today, alone, I am still practicing and I encourage you to do the same. Two of my children have a place in my life but the others do not. I have accepted that and don't look for  a change in the future. It relieves me from having any angst about it or bitterness towards them. They cannot be in this at this time.

I know you have short range goals or plans. Do them. Even writing on these threads is a blessing for many of us. There are many others, like yourself who cannot express as well as you the feelings and their thoughts. You are doing a good thing now!

Blessings, sharon

Posted: Wednesday, September 13, 2017 10:59 PM
Joined: 6/25/2017
Posts: 327

I tell my wife that I can't think of anywhere else I'd rather be than holding her hand while watching a good story on TV, and I mean it. I've ridden roller coasters and better still, I've stood in long, hot lines with impatient children.

I've seen the vacation pictures people take and it's like I was there. My imagination can provide all the discomfort; mosquitos, diarrhea, other forms of car sickness and expense and stress that goes with every vacation.

I don't need to walk a couple miles through a cavern to smell a musty odor for hours. There are better pictures online than I could ever take of anywhere I would happen to have my arm twisted into going.

Has anybody figured out that you can get bored and frustrated with any house you own no matter its location? Even expensive houses get dirty and deteriorate, and once you've seen a view, well, it doesn't change much the next day. 

It's all about relationships, which in retrospect, makes me wish I had developed more friends when I was younger. I just want the friends I make now to have cool houses.



Posted: Thursday, September 14, 2017 3:47 PM
Joined: 6/20/2016
Posts: 3207

You ask what lesson are you to learn from this.  Perhaps the lesson is for your partner, your children.

As far as travel on disability, you've already given proof.  If you don't travel now, you certainly won't be doing it 2 years from now.  

Posted: Thursday, September 14, 2017 4:04 PM
Joined: 11/18/2016
Posts: 451

Sharon, thank you for your beautiful, wise words. No doubt, it was very painful to come to that conclusion about your children, but it probably healed you as well, to accept the truth and not fight it. I agree and thank you for that. How sad though, my entire family comes from a dysfunctional background of sorts, you'd think that when they have the opportunity to build  a real true, loving family, unconventional and definitely untraditional, they run from it. I have tried, maybe not hard enough, but I am tired. Sharon, I am so so sorry fir the passing of your husband. Thank you for sharing your love for him with us- just as underdog, there is no other place you'd be, than with him and you gave to him so willingly and lovingly. I know that love for my wife says the exact thing- she still considers herself blessed to have me!  You were blessed to have eachother too.

Underdog, how sweet your love and patience for your LO.i do agree that it is all about the relationship s we have in our lifetime that matter the most. There's no need to go anywhere to make those beautiful memories. But if it is possible, and you've got that special someone to share those memories with today. than why not.My wife is a real homebody and I told her that I don't want to sit around in front of the tv all the time, but I want to make new memories. We're trying to find that middle ground.

Posted: Friday, September 15, 2017 2:59 AM
Joined: 2/24/2016
Posts: 1096

Hi obrien!

I'm not too good for traveling anymore, but I don't sit around and watch tv all day either.  As a matter of fact, I rarely watch tv anymore.  I love to just be outside or in my greenhouse.  Do you like to do things outdoors?  I feel so connected to life outside with nature.   What about a hobby that you always wanted to pick up?  Now is the time to go for it.  

I know how you feel about health.  Boy, is mine declining too.  Walking is getting difficult.  My stupid rash is back and driving me crazy.  Guess I'll have to increase my gabapentin again.  I keep busy most of the time outside where I am happy and don't have to think about how I feel.  It really does help.  Hey don't forget to get some of that "good" CBD oil from Charlotte's Web by the Stanley brothers.  It really does help with a sense of well being and will help with your physical symptoms too.  

Hope you can find something soon to help you feel better about your situation.  We all have to find what works for us.  Like you said, we're all different.  

Just wanted you to know, I hear you and I understand how you feel.  

Lots of love to you always, BlueSkies

Jim Broede
Posted: Friday, September 15, 2017 10:37 AM
Joined: 12/22/2011
Posts: 5462

It helps. To continue to believe in fairy tales. The ones my mother read to me. And to believe in one key and crucial element of what was taught to me. In Sunday School, of all places. About living happily ever after. As for me, I’m not religious.  But that doesn’t stop me from believing in the spiritual afterlife. Simply, because I want to. In my pursuit of happiness. Yes. Yes. I am a true believer in the future. Even if it sounds like a fairy tale. Odd, isn’t it? That some unhappy professed true believers. That I know quite well. Seem to have forgotten what it means to be true believers. --Jim


Posted: Saturday, September 16, 2017 7:19 AM
Joined: 5/20/2014
Posts: 4408


I needed to hear what you wrote about your children. In my reply to Obrien I came to the realization that I have been waiting for my family to make me happy. Helping them over and over again waiting for my help to take effect. In reality I have been putting band-aids on a geyser.  Repeating the same mistakes over and over and expecting different results. 

Posted: Wednesday, September 27, 2017 12:40 AM
Joined: 8/6/2015
Posts: 1736

So glad it helped. 

All disappointments come from unmet expectations.

I had to stop having expectations. Only one True God meets them and goes beyond!

Posted: Wednesday, September 27, 2017 12:02 PM
Joined: 11/18/2016
Posts: 451

I find myself being constantly disappointed, defineitly by unmet expectations, even when the bar is super-lowered. My take on this is not to expect what I give to others in return; I am coming to terms with the fact that the significant people in my life will never give me what I give them. That was a difficult pill to swallow since I went thru all my "How comes?" and "Why nots". It really messes with your brain, when you're alone all the time. My brain is not a nice place to be sometimes!

I started questioning my self-my self worth and why I can't have all the niceties that I give my family. Why I can't have the surprises like I give them. I am extremely giving, especially to my wife and then am disappointed when it is not reciprocated, not for material reasons, I don't care about "stuff", but for the sentiment, for the time it took, to see the extent she'd go to in order to make me happy- silly mind games, no doubt. And a lot of time on my hands! And bad,bad grammar and punctuation too!

Relationships are hard work and dementia in a relationship can be a real challenge, as ya'll know! We don't always remember that I have dementia, so the arguing and "pig-headedness" continue like nothing's wrong, which only complicates things. Again, I don't want to be defined by dementia- right now, at least- but I know I will be, one day. Today, other doctors I see don't believe, so to speak, that I have dementia. They've known me for years, known my crazy self and don't give credit to my neurologist. Funny! I don't want every thing I do to be attributed to dementia, but when I do something a little weird, that should raise a red flag that it "could be" that dementia thing lurking around. That's where I need my people to help me thru whatever crisis I may be having. By being more in tune to this, can we have better communication and understanding. Hence, less problems maybe. 

I am on this emotional roller coaster, having many contrary feelings and thoughts all the time. Always been moody-always change my mind, but now, having to hold my self accountable since I am no longer alone and my moods and actions and decisions and everything else, affect my wife too.  This dementia thing has really helped me get to know myself better and learn to come to terms with those things that I cannot change. I have been saying the Serenity Prayer ever since I was 15, learning it at an Al-Anon meeting.  I say it now with such deep connection and conviction, asking God for that peace to accept what is and the courage to change what I can, so that the remainder of my life is what I really want it to be . My happiness-not others-not being selfish and ignoring others,is what I have to work on. I need to be focusing on the fact that my wife adores me and is so devoted to me every single day and not that she doesn't plan the surprises like I do.How miniscule and insignificant  is that in the big scope of things! I am blessed that she loves me so much. I need to show more gratitude to what others do for me out of love and not expect anything from them in return.  I am learning to accept myself  and  I am trying to accept others for who they are, as well. Accept without any twerks or changes- that's hard.