Well here we are, almost on the downward side of summer..August 1st already. I wonder how many of us have had a holiday and what did we do, where did we go or do we have a holiday on the schedule before Labor Day? Let's plan a trip, even if it is a virtual trip..whatdayasay?
If we're going to a casino, we have to decide which one, there are so many now. There is a new one in Bangor, Maine, that could use some help. It has a hotel and good restaurant.
As living proof that there can indeed be an "AFTER", new wife Joyce and I are just home from a seven week motorhome adventure "out west" that occupied all of June and most of July. I guess you might call it a nostalgia trip -- we mostly revisited places that Frances and I had loved on past trips, before AD entered the picture. Moving almost every day, we covered lots of ground -- 8500 miles -- ranging as far north and west as Idaho and Montana, and saw lots of beautiful scenery (and burned lots of gas!).
And speaking of casinos, it seemed as though there was a casino on every Indian reservation -- especially in NM and AZ. I'd love to join you all in Maine, but truth be told, these 85 year old bones are still worn out from our trip....
And Marsh, how's the walking situation at the new place you'll be moving into -- are you still getting exercise like we used to prod each other about? Before vacation we were still getting in 2 mile early morning walks most days, but I'll admit that we've been sleeping in instead of walking since we got home a couple of weeks ago.
GC and Joyce - next time travel less and spend more time at one park. If you ever plan one again - try to spend a few days or week in one area and explore. A lot less tiring and a car is easier on gas than a MH. Glad you had a great vacation too. Yes, there are lots of casinos every where now: Indian Reservations are looking to casinos as their gold mine. One big problem is that the casinos are too often run by people out of Nevada and they keep a big share of profits. More states are starting to allow casinos off reservations unless you are in Nevada where they are every where including grocery stores, Walgrens, etc all have slot machines.
Yes, it is August. August came in with cooler weather - in the upper 80s, but next week is suppose to go back up in the upper 90s. The last two nights we were able to sleep with the window open instead of the a/c on. I have noticed Art loosing more - I think it might have to do with not getting out walking and socializing with people in the park. It has been too hot for him to go out walking since June. Also means I get stuck inside with him 24/7. Yesterday I needed to go to the store and wanted to go alone, but he sees me putting shoes on and does the same. I wish I had the courage to tell him I need alone time. Oh well.
I have decided unless something really great comes along, we will stay here for now and not move closer to Spokane. My DIL is moving to Cheney for school this fall. She wants us to move up there so her and the kids are not so alone. But I like where we are. My favorite grocery store is 5 miles away as is Walmart. Up there where I would want to be they would be 30 miles away. I will deal with doctors as needed. I might be lucky and get a doctor at the VA here who will deal with the AD and not send us to Spokane.
He has his primary, neurologist and sleep clinic appointments all on Sept 9 in Portland, then I will deal with changing him to the Walla Walla VA (veterans not Virginia)
Just down the road is the Chumaish (sp) Casino and they always have super shows too...nice facility...here on the central coast of CA! Weather is nice here right now too...This place always has big name entertainment!!!
I will come to the casino too...really need a distraction.
seeing as this is a general monthly thread, I just wanted to add a little note on this heartbreaking day. Man, just when I think I have it together...
When visiting Dado today, he had a very fast lucid moment, it only was maybe less than a minute. He looked at me and held my hands, and a big sob came up and he just cried and I could see him looking in to my soul with fear and questions. Then, it was gone, he drifted off and got grumpy again. (No words, he rarely can speak)
So I am home now in my quiet evenings. For the first time, I thought of each step of the journey, from when he first started losing it and would say THERE IS NOTHING WRONG WITH ME!! when he would catch me looking at him. Then the quick decline, the anger moving to pacing and sundowning, then the pain of leaving him with a home aide for one day a week.
It all came together and it is almost too much to bear, thinking of how he looked at me today, it was like the cumulation of it all.
sorry guys, don't want to drag down this thread., but don't want to start a new one. Sad sad sad sad ugh. It has been 2 and a half years from diagnosis, from a bit forgetful and shaky legs, still working and driving, to a zombie like man in a wheelchair, cannot walk, talk, incontinent, and his beautiful teeth and gums are rotting out no matter how much we brush them.
hopefully tomorrow will be a little better, it is not going away.
Dearest Coco, your post ripped at my heart..... I wish there was something I could do to help you feel better. The best I have is cyber hugs and making sure you know you are loved. I pray you find some comfort for your breaking heart ((Coco))
you always lift my spirits Nikki. I am ok...just needed to tell someone, no one else really wants to hear it, or can understand. I was also thinking about how marinol has helped Lynn so much, and perhaps I could try something for Dado.
I just discovered this site, and just posted under "sharing Feelings", which describes my situation. Very hard staying upbeat when you know where the path is heading. For me, women have been much easier to talk with, because they are just more comfortable discussing intimate things. After being strong and stoic for all my life, I now have to be more open with my feelings of anger and frustration. Looks like I'm the only guy here. Hope I'm welcome.
Thanks. Playing golf today, weather permitting, but I'll be back. I've been looking for spouses to connect with. This is a lousy club to qualify for membership in, but it's where we are.
we were discussing whether or not our spouses are 'in there' at times and if the lucidity can return even if only for a brief moment. my DH is later end stages now and more in bed than not. he got teary eyed as I held his hand, and said as plain as day, 'I will die happy'. blew me away. he made perfect sense, then was back to the gibberish. coco, I understand what you are saying. yes they have their moments. and when it happens its such a moving memento. divvi
Joisey guy, I'm one of the men on this site. We don't post often, but the help we get is much appreciated. Does your name mean you are from "New Joisey"? My wife and I both grew up in New Brunswick, but now we live in Maine. As noted in another thread, I will be placing her in a specialized memory unit next week. This is a very hard thing to do, but the benefits make it worthwhile.
aw Divvi, thanks so much for telling us that. And what an awesome thing for your guy to say. It was that fear and "what the hell happened to me?" look that really got to me. Hopefully my constant affirmations to him about it will be allright, it is not his fault, God is watching over him, hopefully somewhere this will stay with him and he will sense that those things are true.
Joisey guy, welcome. I was so pleased to hear you say that this was the only site that ever made you feel welcome and not judged. We often repeat here, that you can come anytime and SCREAM and CRY and COMPLAIN, and no one will try to set you straight, just love you up. Only we can understand.
As for the men on this site, well there are lots! And in my 58 years of life, after seeing how the guys here are , I have only 100% respect and awe for men now, no more of the sarcasm and thinking we are a different species. They have shown their hearts and souls and sweetness and caring.
Serena Williams the tennis player said today she's not sure if she's peaked yet. That explains my own outlook in a nutshell. Like most people, I'm sure Serena is absorbed by her own story and doesn't bother to explain she means her tennis playing because like Burt Reynolds who recently punched that reporter for not knowing what Smokey and The Bandit was when the truth is the new generation doesn't even know what a cassette tape is and his biography is roughly equivalent to Fatty Arbuckle - it's history.
I'm sure that's not what Galois was thinking his last night on earth. The young frenchman got into a duel and knowing he would be killed the next day, sat up all night writing out his mathematical theorems and died the next day. He was twenty. That, Serena, is peaking.
I doubt also Serena intends to portray the period after she has peaked where like all atheletes and other human beings, it's generally presumed peaking goes on forever which is also why all love stories end before anything meaningful happens. No one wants to know what they do AFTER they marry. They buy the next book and get back to before.
Just like my adopted niece who is anorexic and quite beautiful in all ways but nothing is enough or nothing sits for her within. Somehow she sees a fat ugly person in the mirror where there is none and so she's as thin as a rail.
You would guess that everyone sees this but they do not anymore than they see that their friend (my wife) is still around and it isn't actually true that she never existed. And when I surveyed over the weeks following who thought this niece we all know was very thin - suprise! - no one knew what I was talking about even though it's screamingly obvious.
Now you may or may not think such a line of thought has a bearing on us; but, I say it's the same crucial lesson of afterwards which is similar to high school. Things come, they transform, and they end. I don't know what Serena will do afterwards or if she's peaked. I do know that day isn't far away. She may or may not have serious trouble dealing with life after all of her meaning to that point ends.
Justin Beiber looks like he's going to. He started not 20 miles from here in Stratford as a fresh faced little kid and the local rag interviewed the mother who was reluctantly letting him skip some school when his career started taking off. He's had quite a ride and now every week or so he's starting to act up. He will be peaking before Serena unless he transforms.
You see I don't think the story matters one little bit because they're all exactly the same story. Even Galois was wrapped up on his last night with his very important ideas of himself. That's an insight into the mind of Mr Weiner where I can't tell which story I care about less - him or the honey booboo episode I was unfortunately trapped into watching recently so I could share in some of their insights.
Which is that the struggle is always the same and I think that's true of all life. I'll give you three to one odds that my 'afterwards' is better than Mr Beiber's. I hope for his sake not. It's just who I'm using to illustrate my point.
Get over whatever it is or it will get over you. Harsh. And true. Just ask Barbara Eden who a few years ago in her seventies wearing her Genie costume suggested the fans really wanted the show back and that Larry Hagman was available. It's always sad when we see someone give up and get stuck in their past. It's much better to just bring the past with you. I'm Barbara Eden. I did that show in the 70's. It was great and I wish it could have gone on forever. On we go.
Pharanque, are you going to join us at the gambling hall for a phun time? Maybe we could all wear phunny outphits so we will recognize we are phrom this organization? What do you think?
It never dawned on me that something like this would happen to us. Who spends time thinking about that? I would never have guessed that just feeling like myself again would make me want to kiss the ground in gratitude - or, the other side of that same coin, how shockingly far away from my normal self this disease pushed me without me really ever admitting or understanding that. I was always me but I had become a robot.
I still spend virtually all my time in my room. Last year I wasn't aware of that. This year I am. But it's been the best summer I've had since 2005 mostly because I'm starting to feel human again.
So last night around 1am, I went outside to get my newspaper which is now normally laying somewhere on my lawn in a blue bag. As I stepped outside a rabbit bolted racing away in the moonlight. I saw and heard that some of the neighborhood was sitting around a campfire talking one house over. I could see the light flickering over them and waved. I walked out onto the center park (I'm on a court) and could see a plane high up crossing silently. I realized loneliness and boredom are not the same thing. I have lots of things to do and that makes me lucky. But my plane has a large hole ripped out of it and doesn't fly so good right now. And for me to pretend that's not so means going back into that abyss where I juggle the parts I can live with and I'm not doing that. I've been there and bought the tee shirt.
Whatever the future holds I'll figure it out. There's no end of things to do. I looked though my highschool yearbook and I thought of drawing everyone in how I imagine they age and then going and looking them up. Maybe not. What I am catching on to is that my future is different from my past. I am not the same. All this is me right back to my mother's womb; but, it's impossible that I am who I was 8 years ago or that what I do in this new guise won't change me further.
I'm not suddenly ok with all that or what's all happened and is happening still. I think the range with the bullseye is that we feel ok with life inside ourselves overall. It doesn't have to be defined that much because I think it's more of an internal feeling and getting there and even where there is, actually does have a lot of range in real life. It's what feels right for you where you know that because you feel ok inside about it.
I've changed my picture to a finished painting I did a while ago. It's a french village in the alps set beside a river if it's hard to make out. I put it up because it is the visual representation of what I'm talking about. I don't know squat about painting anymore than I do about psychiatry. What I do know and have seen in countless others is that when we really want something and it drives us in real life - we get somewhere.
Supposition: Your spouse wants nothing more than for you to be happy again even though this is all terribly hard to endure and prays that you can find a road to such a feeling.
That's what I believe the truth is. That's what I believe is the right thing to fight for. I've said the rest ad nauseum on that other thread. It is in this way that I can remember her best. It is in this way that alzheimer's does not win. I can illustrate all this in a short play I've written:
Wolf, When you get busier with your newer life, please take time to post here. We all need to know that this is a major transformation that may kill us in the process, but that, unlike death, some come back to tell about it.
I just got back from taking Dado to the dentist, no easy task. It is in an old building and they lifted him in his wheelchair up the 4 steps. The doctor remembers him of course and has seen him go from that really nice guy that worked at Ace Hardware next door, to now.
They had to extract yet two more teeth, and doctor cleaned his remaining teeth as best as he could. I sat and held his hand, he did real well and I cried like a baby...just could not help it. Sometimes the whole picture for me, changes from the strong lady that does not cry much anymore, to the overwhelming REALITY of my beloved fading.
Anyway, we got him back in the wheelchair, and I said I will take him to the car and come back to pay the bill. (thinking 2 extractions and a quick cleaning would run close to $300.) WELL THE DOCTOR SAID, NO, THERE IS NO CHARGE. YOU ARE DOING A WONDERFUL JOB FOR HIM AND YOU DESERVE A BREAK!!
I hugged the doc and ran out of there sobbing, in a good way.
Just needed to share this story. There are welcomes to new members I need to say, and how excited I am for Joans advocacy, and replies to other great threads. But this is all I am up for now. Love you all.
So good to hear Coco - I am not usually a crying but this brought tears to my eyes. In the medical/dental fields it is rare to have such kindness and generosity. He is priceless.
Yes, there are good ,honest people in this world. On Tuesday, someone hit my mailbox damagimg it beyond repair.Now that I am my own repair man I was upset. Well on Wednesday , I found a brand new mailbox on my front porch,hopefully the farmer who hit my mailbox will come and offer to install it for me.Have had farm equipment hit it several times over the years but first time anyone ever had a conscience.
what a nice gesture, yhouniey! At least you know that who ever hit it was not some kid out with a baseball bat taking swings at mailboxes as they drove past (a common problem in our area)
I have to share some rural mailbox wisdom. After several boxes in as many months, we bought a rolled steel box about 30 years ago. It is still there and I can't imagine what it must feel like to hit it with a baseball bat. Our neighbor, though, was much more creative. He velcroed his box on the post so when it got hit it merely flew to the ground. The box is plastic and it has been bounced off the post a lot. In the morning he picks it up and velcros it back in place!
Wolf, I was at our local agricultural fair last night, and was very tempted to buy you a Beaver Tail, but I know that if I had I would have eaten it and you still would have been without! :-)
Woke up feeling a little sad. Thinking four years ago today I could no longer doubt that something was horribly wrong with DH. That this is most likely the last August we will ever spend together. And missing our grandson's birthday party today. My DS and BIL offered to stay with DH so I could go. But with the last two weeks, I opted to stay home with him. Oh well, I sit here drinking my ice coffee in the ac. It is now 100 outside with the heat index. And DH is coloring his paper plate with the cheese and crackers on it. Our fat cat is sitting right next to him trying to get the cheese and the dogs are close by just incase he drops his plate. So, it is turning out to be a good day. :)))
They're tough times Blue. I wrote my own story on the Widow's thread up at the top just recently and I also focused on the simple things which have a way of retaining their value when so much is under siege.
This has been a very good day. Didn't really do anything special--a trip to the store for odds and ends. Played on the computer. And reminisced about another August 31st which was also a Saturday,. 3 years o I got married. My Mom and sisters were there as were Ron's family. My 12 year old brother was at the reception but not the wedding-----he wan't going to any 4 hour wedding. lo The wedding wasa10, the reception at 2 because Ron's Mom needed set up time for the reception. It was a small wedding but included his Grandma, Aunts, Uncles, our parents, sisters and brothers, cousins and their families. We only had the Labor Day Weekend but had a lot of fun. Went to a Motel with indoor pool that evening. Ron showed off in the big pool an let me soak in the smaller Jacuzzi. We laughed at my walking back to our room on legs turned to butter. That weekend we fished off the pier in Grand Haven (Lake Michigan). We celebrated our next 3 anniversaries going to he same places. And then I thought about other things we did, places we went, people we met. It amazes me at how full our years were. I have no tears for those years--they were a joy--yes even the last ones. Those embodied a deeper trust and caring.
Starting again isn't easy--nobody should ever expect that. It will not be the same as before. I learned a lot over the years and especially these last ones. I don't have to do everything myself. I'm going to have help. I now have the time to try new things. I had sushi when I visited my Daughter in July. My CMT has always been a pain in the tush, and the damage I did to my knee in March is unfixable. A bump in the road.
I have my Degree in Library Science--who better to see the parallel between our lives and books. They all have a prologue, chapters and finally an end. I'm still busy writing mine. Can't wait to see what's next.