Well, May 1 that is. It's always the other kind of mayday around this forum anyway, isn't it?
The rain has stopped, the sun is out, and I'll be heading to Jeff's ALF in a few minutes to see if he's awake for breakfast. I try to feed him a meal as many days a week as I can, because there's not much else you can do to interact. Even at that, he's interacting more with the spoon than with the spoon's operator, but at least it's doing something. His decline has been stunning this year, but even so, you still never know--will we plateau?, are we in a spiral? Life in AD World.
I know feelings are mixed, but I have been glad for the support of Hospice, and their attention to his needs.
Happy May day. Where has the time gone. This year is flying by. (Other days it feels like it is standing still)
emily, I to am thankful for Hospice. The last few months have been so hard. Can't imagine doing this without them. Not only meeting his needs but mine also.
Sun shine and birds singing. Have the back door open and the cats are enjoying listening to the birds. They are both inside cats and only dream of all the birds they would get if outside.
Grass growing before I can get the mower back in the shed after mowing! Lots of rain and then sunshine - that'll do it ever time. And don't forget those pesky weeds. My first summer doing everything alone.
Beautiful, warm sunny day here, great for gardening.
The day didn't start out well though, our internet service was down. This happens from time to time, and it got me thinking about how much I have begun to rely on this board for emotional support. What happens if I have a major blow up and need to vent, and the internet is down???
Coincidentally, I am reading James Clavell's Whirlwind, and had just got to the reference about the "Shrieking Tree" - "a special tree... that you could go out to, alone, when the deevil (sic) ...was upon you and there you could curse and rant and rave and curse some more until there were no more curses left. Then there would always be peace in the home and never a need to really curse a husband or wife or lover or child. Aye, just a wee tree, for a tree can bear all the curses even the deevil himself invented."
So I went outside, and picked a tree, and that will be my shrieking tree, for times when my virtual shrieking tree is not available. Once again, thanks Joan for creating a place that can "bear all the curses even the devil himself invented" : )
The day has ended better - the internet came back up this afternoon, and a friend of DH's just picked him up to take him out, giving me a free evening - Yippee! A bowl of popcorn and the NHL playoffs!
bqd, what a great passage! We all need a "Shrieking Tree" in our yards. I too am incredibly grateful for having found this site. I can't imagine coping without all this information, understanding and support.
Coming into winter here..wet and cool. What a start to May. Already this week, I have had 7 phone calls from Nh about falls and altercations from DH with other residents.. Not happy, do I need to know DH took a plum off another resident, so give her another plum....sorry, I'm so over all this!
We've turned the corner. The trees and bushes are budding. The coats are gone. Two huge rabbits in the backyard, the resident Cardinal is belting out evening songs again, the squirrel mothers have no fur on their backs, and the air is full of the joy of summer returning.
I don't envy the southerners. I wouldn't trade our winters or the starkly changing seasons for anything.
It makes me think how I would appreciate Dianne if I could have her back. She would become annoyed at my attentiveness and protectiveness and wonder what's wrong with me.
What a world we live in where in so many ways, we are much more qualified afterwards now that we have the experience; but, our children are grown, or our career is over, or our soulmate isn't available anymore the way they were or at all.
It is no easy feat to accept these things and it clearly does powerful things to us which some might call 'clinical'. Hopefully one day our depressions leave home and strike out on their own finally leaving us with some peace.
80's here in mid Mich,tulips are opening trees starting to bud an I suspect the cherry blossoms along the driveway will burst forth in a week or so,however I'm not going to take the rose cones off for a week or two,got burned last year with a late hard frost
Oh hot hot hot here in Southern California. There are blossoms on the squash and cucumbers but the lettuce(s?) are fighting the droops. I'm a born Alaskan, so I have a special and rather desperate love of the spring. In Alaska, we called it "spring break-up," I think because the snow and ice would melt, weaken and break open revealing icy mud and water. Nothing like stomping around in a lovely, icy, spring break-up mud puddle! There's even a lottery guessing when a certain river's ice will break up!
I also love seeing the days growing longer. That's an Alaskan thing too. Right around March you start gaining light every day (sometimes 10 minutes a day) until the peak of summer when the sun only pretends to set sometime around midnight. Hold for about a month ... and then the days shorten as you inevitably head toward winter.
I sometimes try to help Jim stay oriented in time by telling him the day, month, season and year. Every now and then I'll casually ask him what day or date or time it is -- he has a giant Casio on his wrist he can look at -- as a little cognitive test to see if he is holding or progressing. Today I asked if he knew what year it was. He shook his head, "year?" He not only didn't know the year, he didn't understand the question. I guess I know that he's getting worse but I don't want to believe it.
But he did the dishes all by himself today and he won an award at the gym for regular attendance and improvement. He's even helped a little in the garden. So I'm going to love this spring and where we are right now and try to learn from all of you who have gone on before to appreciate what I have. To appreciate a glorious spring and having enough of Jim with me that I'm not alone or too lonely. Peace and love to you all.
What an uplifting post, Bunny! Thank you. DH doesn't know the year, day, month - none of that, even with his watch and most of the time he can't tell you what time it is. Didn't understand that Monday was his birthday - didn't know what birthday meant. It's so sad to see this happening.
Another beautiful day up here in the Cariboo, bc canada. Granddaughter and I got up early this morning and went and sat in the hot tub and watched the sun rise.
Bunny - I sure can relate to what you are talking about spring break up and the lottery on what date the ice will come off the lakes. I still have snow in my yard in the bush area. But even with the mud season I still prefer this over living on the coast where it's grey and rains all the time.
Did some work on my garden - I gonna try and stay ahead of the weeds this year. I won't actually plant seeds till the middle of June.
Another beautiful day in Arizona. Gosh, I love this climate after living many years in the Midwest. Anyone who is still experiencing bad weather...you are welcome to c'mon over and lay by my beautiful park-like setting with an inviting swimming pool. Because it's Cinco de Mayo Day...hey, I'll throw a few margaritas in the blender and let's celebrate!
Amber and Bunny We also try to guess when the ice will be off the lake - I guessed April 21st this year, and it came off on the 25th. Last year it was off on March 30th! I guess its a common theme for anyone living in northern climes. Bought some grass seed and fertilizer this weekend so I guess I know what I am doing in my "free" time this week!
I really like the idea of a "shrieking tree" - I'm going to have to write that one down. We've had really beautiful weather here in northeastern Ohio - just warm enough to ditch the jackets, sunny (pretty breezy though). Feels good to fix up the porch & open some windows. I've appreciated everyone's comments -offering a bright spot in an otherwise dark situation. Thanks so much.
Plumbers replaced the pipes under the tub, sink and toilet Tuesday. Today when Dh took his shower he pooped in the tub. Did not realized he did that until I was helping him out of the tub. Good thing I had the tub fixed! Still draining just fine.
I want to scream!
By the way the grass is growing faster than I can cut it!!
I have a tiny tomato plant on the deck here in Texas. imagine my shock to see two tiny green tomatoes on the stem. I have never grown a thing. no green thumb here for sure but its nice to see life continue even in plants! now if my squirrels leave it alone.... :)
We have migrated back to Washington. Art kept thinking we were going to Arizona - for some reason he had it stuck in his mind he wanted to go there, so Lulliebird we almost came your way. It was nice when we left Nevada -splurged on the way and stopped Crystal Crane Hot Springs. The hot water in the pond felt great. Only problem - Art itched for 2 days afterwards cause it dried his skin out. He has never been one to put lotion on so it was a chore to get him to understand he needed to do it. I drove probably 3/4 of the way and he drove the rest.
When we left he was driving but quickly pulled over to let me drive on the interstate. We took 395 up through Oregon which was a windy road through the mountains and valleys of Eastern Oregon. I enjoyed driving the MH there vs on the freeway. A lady told me two years ago to keep my left knee pointed towards the line on the road and keep my eyes focused in front on that line. It worked beautifully - I stay centered in my lane. She also told me not to let the truckers see me pulling to the right part of the lane cause then they won't stay in their lane - it worked cause they moved over to the left of their lane when passing me. I felt comfy at 55 on the freeway and 50 on the two lane road and stayed there.
We were fortunate in that as we got to I-84 we did not encounter the customary winds. But it was hot and for some reason our fan for the a/c would not work. It was 100 when we arrived so we were beat after setting up. Yesterday was 95 and today made maybe 70. I think Art realizes he can drive, but having to make all those decisions is exhausting - decisions that use to be automatic. He did well driving except a couple times I yelled at him for cutting a corner and the car was going off the road. I think he forgot it was behind us. This definitely will be his last time driving.
Not sure we will stay at this park - it is full of long term like us but many are really old and in bad shape. Also, the park is really cramped. But for the price which includes wi-fi and cable, it is a good value. It also has a pool, spa and exercise room. There are new managers that I think are trying to change the appearance cause they told me via email RV's had to be 1995 or newer or in good shape. But, this is their first experience working in an RV park = she comes from a nursing background. They are real nice and helped us when we arrived. The first site they put us in was really unlevel and Art was loosing it over it. I am glad we moved cause the RVs around it were really bad and the guy next to us smoked - outside.
So we are settled in and this next week have lots of running around to do.
I am surprised that you let Art drive at all and I am glad he is no longer driving. My wife almost crashed the car into a curb one time because she HAD to fiddle with the temperature controls and couldn't do that and keep her eye on the road at the same time. And she later said she HAD to make the adjustments that instant, it was unavoidable. I think it was the last time she drove.
Ah, the 1995 rules might be a new one and the older vehicles there are probably grandfathered in. The low cost might be worth some of the negatives and who knows, you might end up with a part time job.
But I am glad you got there safely and you are getting more confident driving the rig. Give yourself some time to rest before making any more decisions.
Charlotte, I always find your emails so interesting. They open up a new way of life to me. Although I've always enjoyed camping (in a tent), I've often wondered what it would be to stay longer than a week or so. For some reason, I'm glad you're back in Washington State. Since I live across the border in B.C., you feel closer somehow.
DH and I had talked about selling the house and living out of a motor home when we retired. I use to show dogs and he liked to fly model planes. We were going to go to dog shows and fly ins. I guess it was just a dream. Sad that we will never get a chance to try it. So Charlotte it is fun to hear of your adventures.
Been thinking of you to, Coco. Hope all is well with you.
Hey blue thanks for thinking of me, and vice versa back at you, always.
I am..fine...sometimes I wonder why I am so blase, just kind of coping and not freaking out. I believe the small dose of Citalopram I am taking is making me that way. It HAS helped, I have been on it two months and it stopped the constant crying jags. I have a bit harder time getting up in the morning, and it makes me a bit slower. So I am trying to take it for at least 6 months like recommended. It is tempting to stop now that the huge crisis is over, for now...I kind of miss having deeper feelings..but, don't want to cry so much again.
I just found out that despite Dado being approved for SS Disability, I am still responsible for his $418.00 "room and board" , where he stays. Lucky I had not held my breath that this would change, and that my sisters legacy will at least get me through until the end of the year to help with that. The income I receive from Dado just covers the main bills, and I am in the negative about $300.00 a month. So thanks again to my sister or I would really be stuck.
I am working on getting compensation for his Agent orange, that will take awhile but I am plugging away at it. It would totally help our income and I would not have to worry.
As for going back to work...oh...I just don't want to even if I "should". It is a huge effort to get back in to the market, and to do all the processing of the raw coconuts without Dado's help. Plus it is a 200 mile round trip to do every time.
I am thinking of maybe seeing about getting just a 2 day a week job, minimum wage, at one of our little markets around here. Just enough to pay for my food and gas each month. Not yet though..lol...I just want to stay home.I am doing a myriad of home improvements, painting, yard etc. it looks really nice.
A bright light is that the care Dado receives is very good in my eyes, and they seem to love him. Plus he lives SO close. He is moving on so fast too, just in his own world. No walking but he can stand up, briefly. He seems sad and a bit angry.
SO that is my update, thanks to someone thinking of me. Love you guys.
Coco, if I could add my two cents worth - you will know when you are ready for that minimum wage, part time job at one of the local markets when the home projects you are working on now (painting, yard work) are not enough. For the moment they are therapeutic for you, (in part because you get to see a positive result from all of your efforts) and you should continue to do them as long as you are enjoying them. {{Hugs}}
Coco, I have no desire to go back to work either. I plan on taking a year off when this is over. And sadly I don't think we have much longer. The hospice team feels like it will be soon. I feel like I need the year to get me back to a good place. My heart and soul is broken and needs care, I am sure. And I still have DD to take care of. This is her last year of school coming up and I want to be able to give what I do have left in me to her. And then I will see where I am and what I should do.
Take care of yourself Coco. Take it one day at a time. bqd is right. You will know when the time is right to do something else.
Coco - I love hearing about Hawaii. I never really had a desire to go there - at least not the tourist part. I always told Art if he wanted to take me there, it would be away from the tourist parts. Although there is a company that rents RVs - the rent includes all the fees to do a loop including a former pineapple plantation with a boat ride that takes you through an irragation canal - part of it is a tunnel, and a stop at the volcano. That sounded fun - but would love to see the real Hawaii. He spent 2 years while in the Navy at Pearl.
Coco - you might consider doing the crafts and selling at the local markets there and/or on the internet. So many people shop the internet now.
We had a guy out to give his opinion on the 'soft' spot in the middle of the MH. His opinion: there is no water leak - probably back in 2006 when the hot water tank sprung a leak it got wet there and it has taken this long to get to the point it is. Because we have steel 'planks' not wood, there is no chance of falling through the floor. When I talked to the owner before his guy came out, he said the extended warranty might cover the repairs to the floor but if there was a leak they would not pay to fix it. I am waiting for his call back - if I don't hear from him by Monday, I will give him a call.
Went to look at a new mattress today - the one we have has broken springs poking out that Art had bent in and put duck tape over, but the have worked back through it. Can't believe how much just a mattress cost - almost as much as a set. I will sleep on it and probably call tomorrow - we get a bigger discount for paying cash.
Went and looked at another RV park today. We were at Horn Rapids years ago for a National RV owners rally when the park first opened. The trees have grown up! Found out why this park, that park and others are so full: every two years Hanford Reservation (nuclear reactor that are shut down) shuts their power plant down for maintenence so all the RVers at their park have to go elsewhere. They have been in the process for years of shutting it down, but it takes a long time plus there is lots of nuclear waste stored there that keeps leaking into the ground that they have to repair. Anyway, this park is nicer, larger sites, but cost $60 more a month. May be worth it though. Will wait out the month here. It bothers me that the managers and so many others I have spoken to use profanity here. We talked to the lady at Horn for over a 1/2 hour and never once used any profanity. Definitely more professional.
Almost made it through the day without Art realizing but around 5:30 tonight he said: in case I have not told you 'happy anniversary', then kissed me. For years he never did that much- why when he is no longer really husband he remembers? Oh, been 42 years.
It is becoming a glorious May.The catbirds have arrived,ususally they are the last to come so surely Spring is here.I saw something at my window and it was a female Oriole pecking at something in the window,along came the male and sat beside her, a wonderful sight for me. Coco,I know you must see the most beautiful birds and I am sure those Florida residents have their share but for me in the more northern area it is a treat . And the stray cat,Miss Ivy, has brought her 4 kittens to the barn. I am trying not to fall in love with them,my grandchildren say they will report me for hoarding cats if I get anymore.But with Sonny in the NH I have plenty of time,I am only sadden that he can't enjoy them.
Yhouniey, I also enjoy the birds that come to spend the summer with us - yesterday there was a pair of rose breasted grosbeaks at the feeder, and the hummingbirds have been back for a week. This is a long weekend in Canada, Victoria Day weekend. Its the traditional weekend for opening up cottages, and since we live in cottage country, I know the lake will be busy for the next couple of days. My DH and I have spent the last two days cleaning out the boat so I can sell it. We haven't used it for a couple of years (the last time hubby drove it, he went forward instead of reverse and ended up on the shoreline). I think he enjoyed helping to clean it, although he did try to put the scrub brush on the handle backwards but I was patient with him. Selling the boat will give me one less thing to worry about, he was reluctant at first to sell it, but seems resigned to it now. And oh yes, we had an earthquake this morning - it measured 5.2 and was centered about 2 miles from our house. No damage, just stuff jumping around. And if was followed 10 minutes later by a 4.3 aftershock. Found a funnel in the fridge - don't know if the quake rattled hubby when he was putting dishes away, or it was just his AD!
Long weekends always suprise me. I find out about them when I hear the fireworks going off or go to the supermarket on a monday and wonder why it's closed. I got a message on friday that the stockmarket would be closed on monday and that's when I realized it was (Queen) Victoria Day weekend up here.
It has set off long memories of the first fifteen years of our life or so where around here Victoria weekend is about when the first hot day arrives even though the leaves have all just come out and all the lakes and rivers are still very cold. Every friday night my wife and I would race home, pack, feed the cats, and jump in the car with the rest of Ontario and head up north to cottage country where lakes are everywhere. We'd put up the tent, blow up the air mattresses, lay out the sleeping bags, and the coleman stove, and go swimming all weekend.
In fact reading through my journals I kept on and off, I'm amazed at what I read. We went out three out of five nights and then somewhere on the weekend, week in and week out for years. It's exhausting just to read through it but it did bring hundreds of memories of the different things we seemed to constantly be doing.
I'm coming to appreciate that it isn't just the people I know well enough that are in their own 'little' worlds. It's most of us. I don't think about how much we used to do versus how much we slowed down in our 40's and 50's because I don't want to. I have some journals from those periods too. By then we went somewhere every few weekends and went out to do something during the week occasionally. It's the tone of a couple in their 40's and it's like a completely different world from the first decade.
We (my wife and I) arrived here through a thousand different currents and eddies just like going to Washington instead of Arizona. A thousand choices where any one of them would have changed much from the constancy our minds like to remember things as. It must be annoying to parents when children point out they remember differently at times. No one I have ever pointed out inaccuracies in memory for has appreciated it.
I'm not 26. I'm 62. But I do see that not only can we write our own stories, we're all doing that even at this very moment. I've just come from a chapter I wrote which is the craziest and darkest chapter so far. At it's start my wife was a relatively normal person still and by it's end she was grazing on the carpets and playing with her poop. It's not in the Gidget goes to Hollywood style. The next chapter isn't finished. In it she is confined to a wheelchair and he does a long and silent samba with sanity on an alien world.
I have no idea how the next chapter after that reads. In it the heroine dies and he withers away full of regret. Or maybe he goes outside once. Maybe something different happens. I haven't written it yet.
Wolf - the second to last paragraph where you wrote about your wife staring at the carpet.....
I truely wish we had something in place that when you get this disease you have the Right to Die with Dignity Will that says when I get to a certain point give me the injection. I bet there would be alot of people that would have one, myself included. My best friend promised to take me to Holland if I ever got this and I her.
Mim, thank you because I'm trying to find them and I don't know where they've gone (my feelings). I'm looking for some in particular. I found laughter though he's a little confused; but, there's no sign of joy or anticipation. They weren't supposed to go this far away but with this tsunami that just keeps coming, it's tough to hang on to all your possessions when the entire house sweeps away.
Amber, I've considered suicide and even more. It didn't occur to me until we read Jim's experiences that taking both of us out at 100mph into a cement bridge was more complicated. Regardless, I came to that place and could not pass. So I know I will never end my life. Instead I will do what I do now. Inflict myself on others in the manner born until time and events decide my eventual fate. I'll probably become rich and famous and enjoy none of it. Life is sweet in it's ironies and you never know.
What I might do though is clean up after myself and leave a note that I'll be back in a week after I swim the English Channel. Then without preparation go and test myself against my limits. Oh. That's too bad. And that's kind of funny but there are many tones within such a concept none of which are suicide. The human mind can be pedestrian. On the other hand if I waited too long after being diagnosed with AD, they might find me on that shore with a towel forgetting what I was going to do. And that's happening now anyways.
No. It's the other window. Sorry this all happened. Ok. Now get out there, have fun, and feel some enthusiasm. That's a joke right? (no answer)
That's not true. The truth is the answer is always the same and the American's captured it perfectly. "You have to want it". Yes you do.
Tomorrow I will start something new. My older daughter is arriving for a 1 week visit. I plan to move out to the family home to be with her. I will be putting my wife in a memory care unit about a 1 hour drive from home. This will be the first time I have tried a memory unit so I don't know how it will work. Fortunately, since I will be nearby, if she doesn't work out (such as they can't take care of her) I will be able to bring her back to the usual routine. In any event, she will be back with me as of next Saturday.
Wolf - "find me at the shore and forgetting what I'm gonna do" LOL Murphy's law eh! By that time we'll be too far along to know or care what is happening to us.
I am determined that I will have a life while going through this and after it is all over "watch out!" Even though I'm on this journey with him, I still own my life. If that means he is in resprite while I'm off on an adventure, well I hope he would do the same if it was the other way around.
We only get one crack at this life and you have to keep dragging yourself up and fight hard to keep a positive out look even when you are knee deep in sh**. It is such a battle that we have to win.
Rainy day here and I hope it will soon clear up. I have granddaughter up visiting again...I sometimes think she lives here....we want to go ATV riding today.
Yesterday was DH birthday. Tried to fix a special dinner and messed it up and was upset all night that most likely his last birthday with me I could not make it right. I am just so depressed about it. I am not handling this very well.
Sorry Blue that it did not work out. Remember - it is the thought that counts and you are the only one that will remember, not him. So forgive yourself and go on. Beating yourself up over it will only take you down.
Awwww blue ((Hugs)) If one of our special days fell on a week day, we always celebrated it on the weekend. Nothing says his birthday celebration has to be on the given day. If you are unhappy about the way it turned out, to give yourself peace of mind, why not just try again.
blue, I agree with Nikki. I don't know what stage your DH is at, but if he does not know when his birthday is, or has forgotten that he just celebrated it, you could do it again and he wouldn't know the difference. Or, if he does remember, you could just tell him that he is so special that you have decided to celebrate it twice this year!