One more month down!!! It's so hot and humid here. I only sit out in my nice little yard in the early morning as it's way to hot any other time of the day. Fall is coming so fast.
Yes, hot during the day, and buggy at night, so evening walks are not as pleasant. I'm like Jazzy--sit "outside" (on screened porch) in the early mornings. Pure heaven.
It's the same over here in the 'afterwards'. Summer is zipping by. It's time to shut the windows during the day but the climate around here is perfectly normal. Eighty degrees plus or minus a few. There's a topless protest in our city today. Three young ladies were riding their bikes last week topless and were stopped by a police officer. The law says shirtless applies equally to both sexes. It's legal in Ontario for a woman to be topless. When they told the officer that, he began inspecting their bikes for safety infractions much to the delight of the video being recorded.
Women in Ontario rarely avail themselves of this right. It was very hot that night and they had already passed a female police officer who said nothing (it was after 9pm). At any rate, I'm sure the points they're making at the rally today will stand out and I'm sure most people in the crowd will be closet types with their i-phones.
It's a glorious summer day and I'm glad I can feel that. Also, it's good to stay abreast of local current events.
I truly find it hard to believe it is August!! In some ways it seems as if New Years was yesterday.
We are having record breaking hot temps on the west coast of Canada. Fire risks are high.
Really enjoying my garden this year with gorgeous flowers and fresh organic vegetables. I can loose myself in gardening, like a meditation where everything else goes away. A most welcome break from the daily grind of this disease.
I did have a bit of a chuckle Wolf with your comment, "It's good to stay abreast of local current events" considering what you had been describing. :-)))
So glad we are all in this together. I like picturing all of us finding cool and shade where we can.
Wolf, I am glad you still have your sense of humor.
Here in Quebec it might have been nice last week to be able to avail ourselves of a topless law, since it was very hot and humid. Instead, I spent a major part of the day either swimming in the lake or down in the basement where the air was significantly cooler.
This coming week calls for cooler temperatures. I hope to start working on my latest project - turning my DH's former bedroom into a sewing room.
Not just topless. There is nothing like swimming skinny. There's a feeling of freedom and connection with the water that I truly love. The problem there, of course, is that there's no toleration for waving your pubic around in public.
As to the rally, hundreds of people showed up demonstrating their mammories for women's rights. I support these weighty issues and am glad to see them out in the open.
For no real reason it reminds me of the time I stuck Dianne's weighty issues into my eyes and shouted in my german accent to "raise periscope!". We were serious people. It was when I then cried out "I can't see! I can't see!" that you get how serious we were.
Those moments are all just mammories now, but I still enjoy them.
(This is not an amusing post, but I didn't know where else to post it.)
Recently I found a web site called whatsyourgrief.com. I found it helpful to read someone else's words to describe what I was feeling. I was going to say that I haven't lost my husband yet, but in many ways I have. So I'm trying to deal with some of the grief in bits and pieces so it doesn't sneak up and crush me.
There were several quotes on this web site that I particularly liked:
Well, every one can master a grief but he that has it.
William Shakespeare
(Or as my husband used to say, "It's not a problem for them, so it's not a problem.")
Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling in at night. I miss you like hell.
Edna St. Vincent Millay
I always thought of Edna St. Vincent Millay as a "romantic" poet. Her quote was not romantic, but it was spot on.
The third quote is for all of us here at "Joan's place":
The healing power of even the most microscopic exchange with someone who knows in a flash precisely what you're talking about because she experienced that thing too cannot be overestimated.
Jan, the director of our adult day care center calls Alzheimer's Disease "grief on the installment plan" since you lose a little bit of your spouse as he/she goes through each stage.
Just curious...many months ago someone posted something that meant a lot to me in the place that I was in at the time. I bookmarked it. This eve I wanted to reread that post. Only problem, I don't know how to find the bookmark. Anyone out there that can help me?
If you mean that you bookmarked it as a favorite then it is in your favorite list. I use Internet Explorer and when I click on the star on my upper right I get the option of saving my current location as a favorite while I get a list of all the things I've bookmarked so far. It would be there in the order in which I saved them.
If that doesn't make sense tell me what you do to bookmark something. How do you do it? I'll help you figure this out.
If you bookmark by adding to favorites within the main forum you get what is called the vanilla forum in Joan's site but is called 'All Discussions' by Internet Explorer. If you bookmark within a thread it will save that thread name. In this case I will come back to 'joang August 2015' which is what Jazzy called this with the normal Joan G prefix.
In that same way if you scan down through your favorites list you will see something entitled joang xxxxxxxx, where the x's are the secondary name of the thread you saw that post in. If it was many months ago it depends on how many things you bookmark.
There are various ways people use software but the main thing is that if you bookmarked something and didn't erase your bookmarks, then it's there.
An easier question is if you bookmark something today, where is that saved? The old bookmark is in the same place further back.
August????? This whole summer has been one big blur. I can't believe that Sid died in the middle of June, a week before summer had even started, and now it's August.
I imagine that is how I will measure time from now on - before or after Sid died.
I too have felt this summer as a big blur. It is over 3 months and the grief has lifted a little. I have been able to do some things at the encouragement of hospice that have helped and although I still feel that much of the time I am going through the motions I can see that I must force myself on some level to engage in other activities. One thing that has happened is that from all posts here I realize how fortunate I was to,even survive this whole experience and that as bad as it was it could have been worse and gone on far longer than the 7 years.
"P' that use to live in the park then moved to the west side to her son's is back, unfortunately she went to another park that is cheaper. Today she came over to swim and talked me into it. Last summer I tried a couple times but the chlorine burned me in the areas deprived of estrogen down yonder. I went swimming again to day (slather lots of coconut oil down yonder) cause she was nagging me to go. It felt good, was there about an hour then felt that was enough time in the sun. I am physically tired now. They just lay around worshiping the sun but I swam/exercised. We will see as the day wears on how many sore muscles show up!!!
Yahoo - I think our hot hot (100+) summer is over - days in upper 80s and mid 90s, nights cooling off to mid 60s. So nice out when I take the dog out at midnight. Been catching the space station going over some nights.
Went to Farmers market and got more tomatoes, corn, cukes, plums, and watermelon. So pig out time again!!
Charlotte, I'm so glad your friend came back, even if she is in a different park. And I find that there is nothing like swimming for painless exercise, especially when it's hot.
Summer cannot be over soon enough to suit me.Can't bear hot weather.My birthday was this week and the kitchen people at the NH surprised me with a cake and they all came out and sang to me.I found it very touching.No candles, couldn't fit 81 on the cake without being a fire hazard.Looking forward to my upcoming surgery later this month,hope they're not expecting me to pay for it,it's to correct the problem they caused back in May when I had surgery.
I came looking if AuntB still needed an answer. Exercising in water is less painful because the water is much denser and gravity on the body is compensated by that. If exercise in water is painful, we can still benefit from sitting in the water because the stresses on the body and the organs from the constant pull of gravity is relieved.
I agree with Joan that however much grieving is changed by how and how long we go through this - it's clear to me that the real seperator is the day Dianne passed away. While I can't even say when Alzheimer's began, and I can't say how differently I would have grieved if it had been something else, the perception that I am now in a different world is huge.
One of the things that's necessary to become an astronaut is to learn to switch to a different axis. When they hold on to the old axis they feel disoriented in the new tilt. We're not trying to be fighter pilots or astronauts, but it's the same principle underneath.
Our world really did fundamentally tilt and it's us that have to re-orient ourselves because the world's not going to.
But just like that potential astronaut, it isn't him telling himself it's shifted, it isn't him understanding it - it's when he commits to it that his own perceptions adjust and the axis is no longer tilted. Personally, I say throw up and be done.
Hitchiker's Guide to Grieving:
Year One - Don't do anything or do whatever because you're going to feel really bad anyway. In fact, put your feet up because the forecast is rain and you may as well be comfortable. Ignore the moments you feel good and don't let them fool you into thinking you have a life because you don't this year. Go out though and try and rejoin humanity because you need the practise. Using this period still screwed up by dementia prison while grieving in an unknown new life is a great time to make major decisions. Also, look at every stranger like an alien who might bite you because you never know and also look at them as potential fillers of the vacancy without skipping a beat. Water the stumps which were your feelings because we'll be needing those later. Carry around all the baggage all the time. This will slow you down but make collapses into them more handy. Remind yourself how old you're getting. Regularly. Oh wait, that's for everybody. Worry about getting Alzheimers. Remind yourself that you're never going through this again. Announce that to the lineup outside so those can go home. Stare at life. It's helpful to quote dour literature but you're all equipped with the jaded noir existentialist outlook. It comes free with depression I think it is. Don't phone anyone drunk in the middle of the night and give them a piece of your mind. You're changing and until you arrive keep your options open. Even an idiot troll is better to talk to than no one. Results may vary. Speaking of your friends and family, remember that with the rich and the slow, always a little patience. They're not the one's who keep asking themselves why they don't feel good. Not to worry, that's life's irrepressible spirit which knows there's no point dwelling but doesn't have new tricks yet. It's best not to beat yourself up or anybody else during this period. Thinking of yourself as Raggedy Ann with the stuffing knocked out laying on the lawn is probably best. Please click the 'like' button if you found this helpful
"Click." Yeah, most of that sounded pretty familiar, Wolf. I can't say that I get drunk in the middle of the night (or any other time for that matter), but a couple times I put so much sugar in my tea that it was almost like drinking syrup. I think that qualifies as dysfunctional eating, which is probably similar to dysfunctional drinking.
I guess I'm showing my ignorance here, but I can't quote any dour literature...can't get into that boring, crabapple stuff. I kind of like books where the villain gets foiled and the heroine lives happily ever after. Actually, I have one of those signs above my kitchen sink that says "Happily Ever After." It's a nice thought, if nothing else, and actually does help keep me in a better mood.
Nothing wrong with nice thoughts. They're as valid as any other thoughts. It's essential that we notice a validity that we can feel or perhaps grow into. Everybody does anyway. Everybody has their outlook. I believe in what's inside. It's me. I get to be me or reality is what's invalid.
Wolf, I'm 'clicking' as well. Trying to rejoin humanity by continuing with my book club and yoga class, but it's so darn scary staring into the abyss and seeing not much of anything. I also agree about no big decisions in that first year. I'd like to move from the family home to a condo or townhouse but in the overheated west coast real estate market there isn't much in the way of choice right now. Some days I feel I'm doing ok and then the tears start and the loneliness sets in - it's so discouraging. I know I'm fortunate to have children, grandchildren and a small group of supportive friends but I want to try and stand on my own two feet. It's a daunting prospect putting yourself out there! I like your line 'remind yourself that you're never going through this again' - I don't know if you mean this life generally or the whole AD caregiving experience but I guess both are true.
Yes, nbgirl, but children, grandchildren and good friends are just not in that innermost circle, that close, personal space we shared with our spouses. I think that is where so much of the loneliness comes in. There is just nobody who breathes in when I breathe out and vice versa any more. I am just not important to anyone in the same way that I was important to Larry. I always feel a bit like the fifth wheel when I'm with other family groups or social groups. It's not that I'm not wanted or welcome...but it's very much a feeling of being on the outside looking in--Larry and I were such a team--through all the better/worse, thick/thin, richer/poorer. We had our own little, cosy, private bubble...and it's gone. And I'm just sort of "out there"...not really mattering a whole lot to anyone. (Not to sound whiny and pathetic, but it's just the simple truth.)
Elizabeth*, I too have children and grandchildren and a few good friends but most do not get it although they mean well. My kids wonder why I do not call. I really have nothing to talk to them about. I too feel like a fifth wheel when in groups of people. All are welcoming but the problem is me not them. Like nbgirl* I want to stand on my on 2 feet and not depend on my kids for support. My condo is fine for now but would consider moving at some time but certainly not now. I miss being married period. I miss being a part of something. Now I do not feel a part of anything except sadness. I have gone back to my yoga class and knitting groups but again mostly going through the motions. Hospice tells me to just allow my sadness and emptiness to be there and that I can function with the sadness. It is something that will probably always be there to some degree. Hospice says just observe it and acknowledge the sadness and know that one does not have to do anything to make it go away.
Elizabeth and CO2 - I completely get it - you're a square peg that just doesn't fit the round hole! Something else new for me is being invited out now by former couples friends - it's an awkward experience. I don't always want to say no and I know they are well-intentioned but they just don't get it! Has either of you experienced anything like this and how do you handle it gracefully?
I think we now need two monthly threads - one for touching base as to how we are, something we might do, a sudden problem, etc. and another one for all these post by people who have already lost their spouse and they mostly have to do with how they are coping and moving on. In fact, seems to me like most all the post are from people who have place their spouse or they have died. It makes it hard to 1) recommend this site to other spouses who still are in the midst of their dementia afflicted spouse, 2) Hard to even come and post because we seem in the minority now and most are involved in the life after.
I know there are separate threads for those that are widow/widowers and one for those placed. Maybe a monthly thread for those topic too instead of one big one would work.
I don't mind reading them but the majority of the threads seem to be on those subjects. Just my 2 cents worth.
Our weather has cooled down over the last week or so. Great for sleeping, but I've decided that with the cool down, the water in the lake is just too cold for swimming. I might change my mind if we get some more warm, sunny days. It seems like the swimming season is just so short. I use swimming as a form of exercise. I prefer it to housework - it gets all the major muscle groups going. I am sorry Charlotte that you feel pain when you swim - its one of my few pleasures living on the lake, since we no longer have a boat/motor and I am really not into fishing.
Our summer is winding down. I've already been contacted by my firewood supplier to see how much wood I want for this winter!
We've cooled down too for us, from the 100s to 90s and 60s at night. It is nice. I know about feeling the time to start prepare for winter especially since we have to do all the planning. I don't think I will hear again from the subsidized apartments again, so planning on winter in the RV again. That is OK. Still a little too hot to do things outside, but should be better next month. Once it stays in the 80s I can leave the door open - no a/c!!!
It would be nice to have a lake to swim in vs chlorinate water! I like lakes and rivers you can see in. I agree - most anything is better than housework. He is watching the Seattle Mariners and I am reading a book by Barbara Eden about her life. It is interesting. It is one of the ebooks I got for free at bookbub.com.
Somebody earlier said something about feeling like they are staring into an abyss & not seeing anything, now that their spouse has passed. I haven't had that experience yet, but sometimes (many times!) I feel that I'm looking into the abyss & there is nothing there....good way to describe the hopeless nature of this disease.
Wolf, thanks for trying to help me. I am currently using my laptop. At the time that I made the bookmark, I was using my tablet...which I prefer. Craziest thing...for 9 months I lived at my daughter's so that my son and his family could live at my place while they were building a home. Once they moved into their new home and I moved back into my place, my tablet will not stay connected to my internet. It will connect and then immediately disconnects. I have tried resetting and rebooting everything. I have synched the tablet a few times but it just will not stay connected. So, I now have to use my laptop which is bigger, heavier and more bulky. Whine whine...The bookmark is on the tablet. Funny thing is, it still works at my daughter's and my son's houses but not at mine. I appreciate your help though. It was when I was reading your suggestions that I realized that I was using the tablet at the time. I need to talk with a geek where I bought it but just haven't gotten motivated to do it yet.
BookBub is something I haven't heard about until today- thank you Charlotte and Mim.
I just finished Anne Tyler's "A Spool of Blue Thread"; a family saga set in Baltimore. It's a family saga and touches a lot on aging, loss and adjustment. Although I got it from the library after I read it I looked at what Amazon reviewers had to say and discovered that there are several guides analyzing the characters and explaining the symbolism. I didn't take it that seriously but it was a good read and had a lot of triggers for me.
Aunt B, the easiest thing to do is take your tablet to your son's or daughter's the next time and from there find the bookmark and either email it to yourself or to one of them and have them forward it to your email. Open that email from your laptop, open the link, and now bookmark it on your laptop.
Second easiest thing to do is find it when you visit one of them and write down the thread name. Then next time you come on with your laptop, search the site for that thread name and find the post. Now bookmark that thread on your laptop.
August: My 4 kids (all in their 20s now,) and I took a 3 day trip last week to place we had traveled a couple times with Jeff--Mohonk Mountain House in New Paltz, NY. It's a huge Craftsman style inn, and was one of Jeff's big architectural inspirations (after Frank Lloyd Wright!)
There's an extraordinary hiking trail there called the Labyrinth, which has you climbing over, under, and around enormous boulders, scaling ladders, overlooking precipices, and finally emerging from a crevasse to a beautiful cliffside view of the Shawangunk hills.
This time we took a nice bag of Jeff's ashes and scattered them down the hillside. Good time with my kids.
In 2 weeks, one of our girls is getting married. Jeff's siblings and cousins, my side of the family, and portions of my new extended family will all be there, and it will be a great party. We will notice Jeff's absence.
Missing Link Found From Brain To The Immune System
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Vessels discovered in the brain that were thought not to exist — could revolutionise study of neurological diseases like Alzheimer’s.
The brain is directly connected to the immune system by vessels previously thought not to exist, new research reports. The finding means the textbooks will have to be rewritten.
Discovery of the vessels may also revolutionise the study of neurological diseases like Alzheimer’s and autism.
Professor Jonathan Kipnis, who led the research, was initially sceptical about the results:
“I really did not believe there are structures in the body that we are not aware of.
I thought the body was mapped.
I thought that these discoveries ended somewhere around the middle of the last century.
But apparently they have not.”
The vessels are located in the meninges — the membrane that surrounds the brain and spinal cord.
The vessels run near major blood vessels, which partly explains why they have been so difficult to find.
The left-hand image below shows the old map of the lymphatic system and the updated version is on the right.
meninges
The discovery will likely have profound implications for how scientists study the neuro-immune system, Professor Kipnis said:
“Instead of asking, ‘How do we study the immune response of the brain?’ ‘Why do multiple sclerosis patients have the immune attacks?’ now we can approach this mechanistically.
Because the brain is like every other tissue connected to the peripheral immune system through meningeal lymphatic vessels.
It changes entirely the way we perceive the neuro-immune interaction. We always perceived it before as something esoteric that can’t be studied.
But now we can ask mechanistic questions.
We believe that for every neurological disease that has an immune component to it, these vessels may play a major role.
Hard to imagine that these vessels would not be involved in a [neurological] disease with an immune component.
In Alzheimer’s, there are accumulations of big protein chunks in the brain.
We think they may be accumulating in the brain because they’re not being efficiently removed by these vessels.”
The study was published in the journal Nature (Louveau et al., 2015).
Network brain image from Shutterstock and lympatic system image from University of Virginia Health System
- See more at: http://www.spring.org.uk/2015/08/missing-link-found-from-brain-to-the-immune-system.php#sthash.qxXlN8Ky.dpuf
Saw on Facebook a few minutes ago about the death of a friend from when we lived in Oregon. We met her and her husband in NY in 2003. We were driving back to split his parents things and they flew for a vacation. We did NY with them the drove them to DC. Spent a couple days there with them. Hb has no memory of them. I tried to say things that might trigger his memory but did not. We had known them from 1998 or so, then lived a few blocks from us in Donald. So, now I know his memory, especially one that is not dealt with on regular basis is gone back to at least 1996 when we moved to Donald. Last night I told him Tuesday is Amber's birthday (daughter) and he said 'and where is she?". We have not seen her for 9 years and she doesn't call him. So sad.
Back out sailing the gulf islands between Vancouver island and the mainland. Weather is wonderful. We're anchored at Thormandby Island that is surrounded with sandy beaches and you can walk out quite a ways as it gradually gets deeper. The water on one side of the island is so warm and on the other cold! My granddaughter and I swim from the boat to shore and back. Beautiful lazy summer days! I can't wait till I can retire...26 months! I hope!
Life does go on after this disease and you can find happiness again.
Hubby is doing great physically but slowly fading. He will probably live for many years. He is in better physical shape than people in their 50's! Which is too bad for him because he is now cognitively at the stage he was most afraid of....not knowing us and being only able to do so little. Just sit and walk. I go weekly to see him but there isn't much talking now. I'm just the nice lady that takes him out for lunch and a drive. Not going to beable to take him out for lunch for very much longer. He's too confused now.
Amber, I am so glad to hear that you are enjoying the summer - and your weather has been beautiful!
We had a cool spell a week or so ago, and I thought summer was over, but its back with a vengeance - hot and humid. I'm going to a friend's cottage tomorrow to help with a construction project - really looking forward to that and a swim in the lake.
Amber, I hope you mean "sailing" as in no motor!! I haven't been sailing for several years. I had to give up our 26 foot sail boat when my wife couldn't help me with it. Yesterday was a beautiful, sunny day with no wind, so my daughter took my sister and me for a ride in their power boat around Blue Hill Bay, Maine. It was fun, but I prefer sail.
Amber, I googled Thormanby Island. Are you on the west side where there is an inlet? When I zoom in it shows the sandy beach and lots of boats anchored out in the water. It is beautiful.
Today is a windy day - blowing out those 100+ we have had for the last 4 days with cooler 90 degree weather. Beats the 100s and won't be long and winter will be here with its challenges.
Met with the VA advocate yesterday. Said can't apply for day care until ready for it, which might be this winter. He did apply for veterans disability with non-service AD. I doubt we will get it but who knows but it can also take a year or longer to hear the decision. Glad we are not depending on it!
Bonnie we have had just beautiful weather here on the Sunshine Coast. Can't say the same for in the interior where my cabin is. Lots of forest fires this year too. One right in Sechelt not far from where the boat is moored. We sailed out of the smoke up to Desolation Sound to get out of it.
Yes Marsh it is a 36 foot sail boat that my new partner owns. He's been sailing for 30+ years. I got my best time up to 6.5 knots! Not much when you compare it to the speed of a motor boat but in a sailboat not too bad!
Charlotte - there are North and South Thormandby islands that got joined together when a big storm came through a few years ago and piled the sand up joining them. They're made up of just sand and no rock. We anchor in the bay on the cold water side and the walk over to the warm water side facing Malaspina strait.
I've been watching the reports of all the forest fires out west in Canada and the US. A friend of mine sent me a picture of one that is burning out of control just east of Los Angeles.
Here it has been very humid - my lawn has never looked so good this time of year - no drought for us. But the down side is the the humidity can sometimes be almost unbearable. Any exercise at all results in bucketfuls of perspiration. I'm not going to complain about the heat though - it won't be too long before the cold of the winter months arrives. Now that I will complain about! :-)
No thankfully, but there is so much smoke in there air you can't see the hills around us. I was just looking at a map of all the fires in WA, OR and ID plus BC and there are so many, so many homes have been lost.
We had big winds the other day, all day, and had hoped it would clean the air. Unfortunately, it fueled the fires so creating more smoke. Our only hope is rain - which there is none in the 10 day forecast. The man we got to know that is walking with Art has COPD so he couldn't go today. Sad that Art never remembers going walking with him and the guy knows that so it is fine with him. He doesn't remember the guys name (like most in the park) but does recognize him when he sees him.
I went for my walk this morning before he got up. Twice around the park is about a mile. The second time around when we got half way which is by the office, Jasmine wanted to go back home - no way did she want to keep walking but I won and she did! Art was up, dressed and outside looking waiting for us.
I took him off the galantamine the first of June. I saw no real change to speak of. This loss of long term memory was happening before and seems to be happening faster but that might be either because I am asking more questions to find out or it was going on anyway and just didn't notice. The lady that moved away in March and came back 2 weeks ago (but to a different park) he is starting to remember something about her coming back, just not where. There is one of the shift managers at the Taco Bell we usually go to that always comes and says 'hi' to Art and they give each other a hard time, so Art looks for him. We went to BK last night (they are the only fast food that has caffeine free diet cola) and he asked the cashier where the tall guy was. I told him that was a different place, not here. He was disappointed. I do know for the most part his memory is lost back to 1992, not sure how far back from that.