I don't see another February discussion started, so here goes. Tomorrow, Feb. 2, is the anniversary of Eric's death at age 91. It was a relief to have his suffering over, but a sadness to lose him. All in all, it's been rough year. But things are looking brighter all the time. I'm enjoying life again and have time now for friends and family. The pussy willows are out in the woods, and I see green shoots from bulbs in the garden. The sun shone all day, the ocean was blue, and so were the mountains. My old friend from 30 years ago and I are doing fine.
Mary75, I lost my father last February also and still miss him greatly. He was my best friend. We did everything together. As much as I miss him I can't imagine what it will be like when I lose Kathryn. I am sure losing Eric had to be really hard. I am glad to see you were strong enough to make it though the year and I believe you will continue to do well now that you have made it this far. I wish you the very best as I am sure you deserve it.
mary75, I hope this next year finds you at peace, and that the ugly stepchildren will be gone from your life. I find comfort that you say that after a year, you are doing better. I know your last year was harder than most have to go through. (((HUGS)))
It's only been six months for me. This emotional rollercoaster is okay...I have as many fun times as sad times. Thanksgiving and Christmas were good....filled with kids, grandkids, fun remembrances. However, Valentine's Day was just for the two of us...and even with AD, I made special meals and made it festive...and my being alone without him is more poignant this year. I've determined to try not to think of it, and to play hardy for the Super Bowl this Sunday, and the Academy Awards at the end of the month.
I've been traveling some, and have several short trips planned this year - Jamaica, England, Houston, Austin, Michigan, just to name a few...remember my bucket list? <grin> Well, I decided to travel on my days off while I can (I still work - have to build back up the savings that AD took away from me). My trips are to visit friends (except for England - that is where my daughter is living).
I hope this month brings some joy and good memories to all of you. We are a family here, and I still need you all!
Even my Chicago sister hasn't had winter yet. One or two snowfalls of about 6 inches or less, and the rest of the time it's been mild - 40's and above. Of course, down here in South Florida, winter means 75 degrees. <grin>
For those old hockey fans, I was reading today the fund raising that Gordie Howe does for AD. His wife died of Pick's and he has dementia probably VaD. He does his fund raising up there in Canada. When I read it to my husband his comment was something like 'even the great athletes can't escape it'.
Living in the Detroit area, we get a lot of news regarding Gordie Howe. The article we had in today's paper was quite extensive. One of Gordie's sons is a physician and he says his father does NOT have Alz but a cognitive thing. Poor Gordie does not speak well and people are not to ask him about his hockey days because of his "short memory status." Really now. Who are they trying to kid? Guess they don't want to discourage Gordie with an Alz dx. His poor wife died of Pick's Disease and that was horrendous for him as it was a very long journey.
Yes no one escapes, despite physical and mental capacity. I hate it so...when people look at dh like he is a dummy, and assume, he always was. ugh
On a good February note, FINALLY, my new gourd plants are coming up.!!!! Last year was a bad crop as I spend so much time in Canada with my sick sister.
Despite sadness, frustration, and grief, I am still on to the creativity. I am trying a new method, and have been soaking sandlewood bark in water, to make the most gorgeous mahagony colored dye , never saw such a beautiful color.
Today marks two years into our journey. I have come so far and DH has lost so much. I am much stronger than I ever thought I was and DH is but a shell of his former self. It seems I gain and he loses. Hate to see it happen. Without everyone here I don't know what I would have done. My heart is broken in a thousand pieces but is still able to love. Funny how we are able to keep on keeping on. I will try my best to make it to the other side. I pray everyday for everyone here. Some how my faith is stronger. That seems odd, even to me.
There is no one else who could understand how I am feeling but you all. Thanks to all for walking with me. Many hugs to you :)
hugs to you too blue...for walking with us. More and more, this place is my "city of refuge""
Andy, I do many things with the gourds. However, the BIG deal over here in Hawaii, is the newly revived art of "Ni'ihau dying," something the Hawaiians of old did.
Our method, you harvest the gourd while it is ripe, but still green skin. You then scrape the design with a sharp knife, it takes a LONG time and you can get quite detailed. Then, you cut the top off, clean a bit of the guts out, and fill it with strong coffee or dye of your choice. It sits, as you refill it each day , for about a month. The skin that was scraped off remains golden background, and the skin that was left on absorbs the color. You dump out the stinky mess when it is ready, and then wash off all the moldy skin. VOILA! it is amazing.
Just google "coffee dyed gourds" to see some pictures.
HI guys, you know this is the best site to see how it is done.
google the artist Tamsen Fox, and on her site, click on the Ni'ihau method on the left. She has an awesome detailed explanation, and is one of the premier gourd artists. Go down to the bottom of the explanation for Niihau method and she has some wonderful before and after pictures.
I do not have a website at this time, honestly they sell as fast as I can make them! I cannot get rich..lol..as they are very labor intensive, and taking care of dh has cut way in to creating time. But it really is a fascinating process. check out Tamsens site.
My style is a mix of Polynesian and Patty lore, geometric and flowery and leafy too.
Coco the process is awesome. It's a shame tourists don't realize how labor intensive and long it is. I have found people rarely want to pay for craft items. My neighbor made beautiful pine needle baskets and was hurt when folks tried to talk him down on the price.
Coco... Several years ago I was in a gift shop and they had made these beautiful Gourd bird houses out of big round gourds. I always regreted I didn't buy one.
Another round with the kids, this time my daughter pointing out that I am not her real mother so can not get any of my nasty behaviors. She also included a sentence that warned I need to be nice to her brother cause he is an ex-marine trained in specific ways of which I know what she means. He likes to brag he is a trained killing machine. She said 'goodbye' and I emailed back 'goodbye'. then email son (who now is living with her and her abusive boyfriend) with the remark from her telling him I did not appreciate her using him to threaten me. He ends his email telling me he would call his dad but is afraid I will answer his phone. then asked how he was. I emailed back I don't answer his phone and goodbye to him too.
I laid in bed last night when a better remark came to mind: you dad is fine - he is in the process of dying that can take months or years, but he is still dying. Haven't decided to send it to him or not. Just felt good to think about sending it to him.
I sat watching Jimmy Stewart flying the Spirit of St Louis while the full moon rose up from behind the houses on the other side of the court and lifted up into the sky slowly. I have been sobbing on and off all day because there is an empty chair beside me and while I eat my chicken pies and broccoli alone I agreed earlier in the day that the nursing home can restrain my poor wife in the wheelchair they have her in.
I move fluidly between the different flavours of anguish that I gave her up, that I put her in a home, that I am now alone, that she is in such a state and over and over night and day it is "I'm sorry Dianne", I'm sorry Dianne, I'm sorry Dianne. And while I am sorry she got this disease and I'm sorry she has to go through this, what hurts so much is that I'm sorry she can't see this and she can't be here and she can't live anymore and pat the cats and dream of things or watch Jimmy flying the plane or sit in her wing chair beside me.
The social worker at the residence says it's a normal reaction to have a hard time going in the first time. It's been 13 days and I was asked at first not to show up because she's still hard to control and they have someone with her all day because she gets into everything and then wears herself out; but, the truth is that when I turn that first time and leave her there I will surely break into little pieces and shatter to the ground. They had the director call me and talk and she told me they wanted me to know that they all know how I loved her because they know what I must have gone through and what they don't know is that I know that in my last instance of my last breath I will be saying "I'm sorry Dianne" and I so truly am.
I have had the Hoover Dam of walls up and while I fought to keep her with me I was clinging to what we had left and continuing down the road as we've done since we were 17 together. I knew this fork in the road was coming where down one path she goes into a locked up place to die and I face life alone. I didn't know that this would be when the dam cracks and splinters and starts to break and I realize that I have to let it.
I'm not ashamed to cry and I pity the poor SOB who mistakes that for weakness because I would love to fight someone the way a man lost in the desert thirsts for water. But there is no target and fabricating one is the action of the stupid.
As God is my witness, I will live my life and with what time I have, drink it in and create value that has meaning in the moments. Her presence will never leave me. I won't allow it. Whatever I say that decision is already made. I thought that when she was diagnosed and my inner mind said this is a spiritual journey that meant that I would be learning how to give beyond what I'd done so far. I'm starting to understand that it means the journey of choosing what I am. I believe all religions miss the mark somewhat. Only one can be right in any regard. That's semantics because I am further down the road from when I was 15 and asked God if I could just learn directly and my poor mother never really understood that it wasn't the church - it was the buildings and the dogmas; and while all the religions have good things to say I understood I was already in church. I am already in the house of god. And while some make an offering to their god and I respect that each person has the right to choose their beliefs, mine is making an offer to me.
Do something of value. Choose what that is. Struggle towards it and when you fall down, get back up again and keep trying. That, after all, is what creates meaning and what that word itself conveys and why that word exists at all. We choose the meaning of all things whether we admit that or not. Whether that is gourds or trained killing machines or our spouses getting this disease - it is we who assign the meaning. I can't stop feeling the anger or the sorrow; but, if I become a bitter person it is because I have chosen.
I'm coming Dianne.
...edit - she is on Rispiridone which is causing her to be imbalanced to the right that is why the wheelchair right now
Dear Wolf, I find it hard to respond to your posts because I can't find the words to do them justice. But t know that I read them and am deeply touched and am rooting for you.
((Wolf)) I am so very sorry, for both you and your Dianne.....
I have no words of wisdom to make the pain lessen. Having placed my husband three years ago, I do understand the level of anguish you are facing. My heart aches for you.
I agree with Mary, there is just nothing I can find to say.... but please do know I care. If you want to write, if you think it will help release some of the emotions, please feel free to do so. I spent the better part of that first year on my knees... it is beyond difficult.......
one of my favorite quotes "“There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief...and unspeakable love.” ~ Washington Irving
Ok, February. I seem to recall that Februaries aren't the easiest things to take under the best of circumstances, as months go.
Around here we are bored and stir-crazy. I have projects to work on, but find myself unable to focus with an AD husband ambling around being, in turns, bored, in need of assistance, or determined to "get a job" or "go to law school." (yes, it still comes up.)
I realize I don't have that much to complain about really. But geez I'm bored. Cannot start a life, add interesting things to the one I've got, or find a way to make it worthwhile for Jeff. Bleh. Spring might help.
That's the single hardest thing I've ever written. It was wrenching and I couldn't see the screen half the time. It's about being true to the truth for me and there's something inside that demands that, where I can get away with other things and be ok inside - but not about admitting the important truths to myself.
I'm sorry that I made people sad. I'm just as dysfunctional as anyone else because I ignore completely the evidence that I did a lot for her and concentrate on feeling sh*tty about what I did wrong (hi Frank).
I said I tell the truth and if I step back it is this. I get to live and she doesn't. I can do anything I want now (within reason) and she is in a wheelchair. I feel very badly about putting her there and I feel guilty about being able to enjoy my life. I can understand why I feel those things. It's all hitting now because of what I said. I was still fighting to hang on and just solving problems and it's only now that I have stepped back that what is all happening to us is washing over me.
But I do have one question of the Parkwood Mennonite home that sent me a letter turning me down and listing every single thing Dianne has done in painful detail. That question is this. If you can't do it with your teams of professionals - how do you think I'm going to do it by myself?
I have no right to complain. Some of you have no choice and I can promise it's not going to be easy coming up with the almost $30,000 a year I will be paying for them to take over her care.
Sometimes you let the pain wash over you and I agree that crying is a sincere form of expression. But I'm only down - not out. I will never give up on life and I have no fear of having range in emotion or showing that to anyone.
I am realizing today that by confessing all that to myself on this board, I also caused sorrow to you who have read that here and while every word was heartfelt and real - there is much more which I have also at other times said.
Emily, you right. I know because I am now free. I am closed to relationships until I am no longer married but that isn't even on my mind. I can paint now. I can leave the paints out. I go out of the house wherever I want and while I haven't exercised that yet - I can hear the world literally calling to me. I'm going down to Hamilton soon to buy some fresh canvases. I invited some friends to dinner (who also love her and helped me) and am going to cook a nice dinner. I had my best friend overnight where we talked all night. I'm watching the last light fading through the trees and the lights twinkling in the valley as I type. I just watched Midnight in Paris the latest Woody Allen film which was a lovely bit of fun. I went to the Italian bakery today. I'm just getting started. I mean to live the life I now have and I can now.
to all
I cry too. I'm so sorry for her. But I have a book to write for her and as I said long ago - not until I have lived every step of this experience and know what there is to say.
Thank you. I'm sorry I made you sad. You have to understand that I only have two choices. Withdraw from life because of this and feel that pain, or enter life without her and feel that pain. I know how hard that is for some people and I recently wrote the three reasons why that is hard for them - but that doesn't apply to me.
I spoke of my relationship with my beliefs and the directness of them. In that the answer to my question was that I don't have the power to let him down. The only power I have is to let myself down. This was said smiling. My beliefs include a lively sense of humour. Don't blame me. I didn't invent funny - he did.
Don't fear pain or laughter my friends. It's all interconnected. Crying and laughing are cousins and after five and a half years of being nothing but my wife's caregiver I can already see that the thing I posted about in the first week I joined this board has come about. I wrapped my spirit in integrity and honesty and yes it has survived this voyage with me.
I bear no blame that my spouse got dementia. My wife bears no blame. I know I did a lot to help her. And now I am going to live life both without her and with her, now and after she passes away. The only thing I need when I move down to some small place because I am incapable of anything else is her ashes with me as the token that she is always in my heart, always welcome, and that I am always 'us'.
Feel the love for life I am sending and if one person feels one ounce lighter then another reason why life is so miraculous becomes apparent.
no need to say you are sorry for making us cry Wolf.
We can just see the plain truth of your love for Dianne, and it makes us go inward and see ourselves too. I don't want to dread the days to come, but they will.
You said that was the hardest most painful thing you ever wrote. So good that you did it.
and I am so freaking scared to look down the road.
When I got back from my sister dying in Canada, and then confronted the full force of my husbands illness, that, was the hardest I ever cried, but, it was for the fear of what was to come.
you are already there. Thank you so much for trusting us to care.
wolf you will survive this as will we all hopefully. not easy and the pain of not being 'us' but 'i' is a huge transition into the unknown after so many years together. its good that you are able to love outwardly now and throw yourself into the living phase again. painting is a huge release and you should feel free to express all that you write in a canvas. it the painting is as vivid as your posts it will be fantastic. wishing you luck. divvi
wolf, so much of what you written are things that I am feeling but I cannot put my feelings into words right now. I had to put my DH into a NH Jan. 27th because he could no longer walk and was getting combative with me. I, too, have been on this journey for 5 1/2 years. I feel empty inside and the house is so empty but I will pull up my big girl panties and get on with living. Continue writing. It's good for the soul.
Wolf...ditto for me...I feel your pain and anguish, and am no stranger to tears. You need to return your calls....I tried several times, but just got the voicemail. I think it takes great strength for a man to cry, and it is not a sign of weakness...but rather one of love. I join you in your feelings, and can feel your pain of putting Dianne in the NH...I am blessed that I was able to side step that decision, and she is now in a really fantastic NH, and it does not cost much at all...just a lot of tears on my part. I need to keep hydrated....GatorAde....and I cry red tears when I drink the Punch, green when its lime, and some other flavor (Mountain mist??)Anway, the pain will linger on for a while...and I do relive it every time I see someone post. I continue working on a cure, and I believe I am getting closer.....I recently discovered that 100% of all Alz patients have paid taxes during their lifetime...andI believe the cure would be to stop paying them..I cannot wait to start testing and doing a study.. Hey Wolf...ya owe me a phone call.........and hang in there.
" You have to understand that I only have two choices. Withdraw from life because of this and feel that pain, or enter life without her and feel that pain. "
And some of us, like me, have to do both. I withdrew from everything, except Lynn. I stayed with him for 10 hours the day of placement and at least 8 hours a day for the first few months he was there. His cries to come home with me still haunt me to this day. I desperately wanted to avoid that particular pain, I hated having to witness it day after day… but he needed me there to help him transition, I had to help him. For me there was no other option.
We are all unique, as is our situations and our pain. There is no right or wrong. There is no easy way out…
Wolf, it will never be what it once was, but it will get better than it is right now. I hope you find joy in this new world you are courageously venturing out into. ((hugs))
Frank, I couldn't agree more with your sentiment that crying is a show of strength. I never saw my Dad cry, ever, until the day his brother died. At what he perceived his weakest, he was the strongest to me. It takes more courage to embrace and feel the pain than it does to hide and lock it away. I respect that in everyone, women and men alike.
Sorry Frank, I've been a mess. I only got the one message. I'll call soon.
Bama, I wrote a big long thing and I've saved it but it's not meaningful enough. It boils down to this. We create our reality within the realities created by life. I howl into the gale of the pain and cry like a little girl because if I didn't I would be false. But that is my experience of life happening to me. Inside that whether I ever admit it conciously, I am making new decisions. Everyone does that goes through this.
How we experience life is only partly what is happening to us. It is also powerfully influenced by what we see and therefore believe as real. Police detectives learn this quickly. Ten people can see the very same event and all the stories differ in some material way.
Putting it differently, we all make reality up. Just ask the captain of that cruise ship who was directing the rescue effort cowering in his early departed lifeboat. You think he might be cowardly but he isn't lying. He sees a different reality and if you could see through his mind for a second you'd be stunned that he really does.
That becomes important when we're pulled into the vortex of life changing events. Our beliefs about reality come up for review automatically by the hippocampus in our brain which comprehends that the degree of change in normality calls the previous set of decisions about life up for us to consider. Fairly urgently and with full weight.
Here is the exact transcript of how that went down in my mind:
Brain: The ship is sinking! Protect the core! Me: What core? Brain: The core of what I am...I mean we are. Me: Where is it? What is it? Brain: I don't have that information but do something! Me: Slow down and explain Brain: Too many things are changing. I am...I mean you are seriously alarmed! Me: No I'm not. Brain: Yes you are. Believe me, I know. Me: Well what do I do then? Brain: Re-evaluate Me: Re-evaluate what? Brain: Everything. Me: Ok, I'm done. Brain: No you're not Me: Yes I am. Hit the restart and stop having a cow.
After a while I calmed it down and we got through a few things:
I'm ok with what I am and what I've done. I've been under an awful lot of stress for a long time and now all of what that was is changing. I no longer go hour to hour year by year. It is very quiet suddenly. I put her there. I am now alone. Everything felt a certain way and all of that is now morphing. In the quiet I am having thoughts about me in ways I've never had before. I'm starting to see what I've been through differently. The hurt is coming out now that I'm not fighting every hour. I'm thinking about me after years of not doing that. I don't feel connected to the truths I saw before. I have changed. My brain was right. I need to pay attention to these things.
So kill myself? Nope. Try and have some fun. So flail myself? Nope. No reason.
Look. I'll tell it straight up. You fight everything to be as true as you can and those are challenges the extent of which most never face. You can't save them and you have to accept that which is rightly a hard thing to do. If you give up on life because you are lost then here are the facts. You fought for them but not yourself.
That means face the pain straight on till morning and second star to the right. And if you don't know what that really means then you've lost your spirit and I would find it. Life where we have closed off the joy of life because we have experienced serious pain and great loss is a sad and wrong decision to arrive at.
So, I've entered my M&M's period. Memories and moments. I would be foolish to think I can jump to some new paradigm in one leap. It won't be real so it won't stick. Smell the food. See the moment. Feel the pain. Remember and collect the memories. Feel free to embellish. Weep. Put yourself into new moments. See that movie. Read that book. Go out. Smell that flower. Treat yourself. Laugh for god's sakes. I'm sorry you can't be here with me. But I am and I respect that and if I am true to what we were then I will allow myself to live it.
You americans have an excellent saying. You've got to want it enough. How do I do that when I don't know who I am right now or what to do? M&M's. Memories and moments. Give them meaning. It's a good thing to start doing while the hurt is beating you up anyways.
Wolf, if you get quiet and listen real hard you will hear the din of cheering....we are all standing at the sidelines cheering , cheering you on, cheering for what you have been through, cheering because one day someone will be cheering for us as we begin the journey through the "valley of the shadow of death". You are doing it through a great crowd of witnesses and you give us HOPE. Stay strong, one step at a time.
Hah...my brain does that too. Sometimes the two sectors don't communicate with each other as well as you're describing. For example, sometimes the Emotion Core takes over without giving Executive Function the logical explanation it's demanding. Usually they sort it out later.
I've read your posts on this thread and still pretty much feel at a loss for words. Pain. I feel pain; and I have to say that I took a lot of inspiration from your words.
Tonight my DIL dropped off the kids so she could go to urgent care to have her wrist checked out. She works supervising children visits who have been removed from their parents,and of course many are behavior problems. One grabbed her wrist and twisted it. Anyway, the kids had gone into the house to see the guy who rents a room from my sister. After a while I mentioned I should go in to check on them making sure they weren't running unsupervised in the house. He said he would go in. A few minutes later he came back in tears saying the kids are never coming over here again. For some reason we can't figure out when the 3 year old grandson saw him he threw a cookie at him. Hb told him to stop and he threw the rest of the cookie. HB slapped his hand and left.
Grandson is at that hitting stage and he has anger towards his dad for leaving him plus his dad's way to deal with them was blowing up and hitting things. He has put his fist through his computer monitor more than once. I went in and got the kids then took them to their place to wait for mom to get home. In the past it has happened in the motorhome where I know what is going on and can intervene. Grandson went home devastated and Hb was upset. He just doesn't understand he is being 3 and does not have the patience anymore.
After getting back to their place I explained to them that papa was sick, he has an illness that is killing his brain. Grandson brought up all the medicine he takes and I told him there is no medicine that will help papa. Grandson was upset which is very understandable. When mom got home and I told her, she helped him write an apology and color him a picture -then another, and another. I think I had 6 pages of coloring for papa. Mom also pointed out that their daddy acts like he does (with anger, yelling, throwing things, hitting) out of choice - he can stop. Papa is sick and can't help it. There is nothing wrong with slapping the hand or spanking but she is very choosing when to do it because of their dad's anger problem. At their place when he hits me I send him to timeout although my first reflex is to spank his little bottom.
Why couldn't he have forgotten it by the time I got home? When I want his memory to fail - it doesn't!! I am so upset - been crying off and on all evening.
Oh, DIL was telling me the other day when the kids were in with my sister, grandson hit his sister. My sister told her that is a result of being around me - I taught him that behavior. DIL stood up for me telling her she was totally wrong. I am sure when I pulled them out of the house tonight she was sure I would be spanking them. I did neither, just told them we were going home to their place.
Charlotte, your post brought me to tears. Sometimes it’s so difficult to explain AZ to a young child especially a 3 year old. You & your DIL handled it beautifully. My grandchildren are a little older (12 & younger) but we also told them that his brain isn’t working right anymore & thankfully all 8 of them seem to understand & help him when we go places together. We have a 9 month old granddaughter & I doubt that he will even be around by the time she should be getting to know him. SO SAD!
Reporting in that the friend from the past and I had some good times, but I've decided that this is not for me. I've been feeling sad about it, but I think it was more about making the decision. Now that I've made it, I'm feeling free, free, free. Since I'm going to be 82 soon, I'm not going to try again. I don't care what they say, they want more than companionship.
Hb had his PCP appointment yesterday and eye exam. Eyes are fine - no sign of problems but is getting new glasses. PCP gave him the MMSE including the clock which his neuro has not done the last two times. By the time he got to nine it was where the 7 should be but realized it was wrong and put corrected it. He was suppose to put 10:50 but put 11:10 instead. But the score was 20 - same as in October with neuro. He left feeling good that he has not lost any ground. I didn't have the guts to rain on his 'victory' and tell him it only measures losses in some areas, not all. I will wait to read the 'progress report' when it comes - there is always more information in them.
I did ask the doctor for clarification that if he should get to the place where he need psych meds would I call him or neuro? He said the neurologist since she is more experienced in dealing with behavioral and emotional problems where dementia is related. He did say though if it comes on suddenly to call him as he would check for UTI and his lungs. I hated asking in front of hubby but I needed to find out. Thank goodness he does not know what really lies ahead as he only knows the little bit of what his dad went through since we were 3500 miles away. And, he will, if not already, forget the question. This evening he kept asking when his doctor appointments are - he has already forgotten he went yesterday.