I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. It was written to help our new members (and veterans) understand our evolution as spousal caregivers.
Good blog Joan, I have adjusted to most things but not everything i.e. paranoia episodes. They get me going every time!!!! I have to make a BIG effort to ignore it next time it comes up. For other things I tell myself I'm a duck and it is rolling off my back. Maybe it will work for paranoia too! I hope.
I know I spent entirely too long in the denial stage. I did blame the changes on normal aging, or his car accident. Even when he was diagnosed firmly in stage 5, I still was in denial. Oh I accepted it was Alzheimer's...but I denied the truth of what was to come. That is so uncharacteristic of me!! I face everything Head On! But, in this, I needed more time for my heart to catch up.
I particularly like what you wrote about adjusting and accepting........ even firmly in late stage, I still must adapt.....
I shared this awhile ago, it helps me a lot...and I thought it fitting for this thread....
Comment Time Aug 31st 2010 I have been in a support group to try to help me deal with my Dad's suicide. I take a lot of what I have learned and apply it to losing Lynn, all loss really.....Here is one story I really like. It was from a newsletter awhile back...
"When speaking publicly about suicide, I like to tell the story of the tree and the tree house. It's a true story. There is, in fact, a tree, and are remnants of the tree house. Both are in my backyard.
The tree is sturdy, large and leafy, taller than my two-story house, and mature, its trunk nearly three-feet thick. For children from a bygone era it was nature's version of playground equipment. More than just for climbing, the tree's hand-shaped branches held a tree house built many years ago by a farmer for his children.
As the years passed, the tree house fell away until nothing was left but a two-by-four attached to the trunk. As the tree grew taller and thicker, the board climbed higher and sank deeper into the trunk. Obviously, a board with rusty nails embedded in a tree is not natural to the tree, but the tree continued to grow so that today the trunk, bark and board are one.
The lesson that perhaps can be taken from the tree and the tree house is that when a tragedy becomes attached to our hearts, then we must find a way to grow with it, grow around it and allow it to be with us, but of course not become us. That is growth. And growth takes courage."
I like the word "adjust" better than "accept", too. Maybe I'll get to acceptance eventually, but now I'm struggling with adjusting, adjusting, and more adjusting. It's not just the decline in my husband that I must adjust to; it's the decline in my health, the decline in our finances, the loss of our home, the changed relationships with family, and termination of life-long hopes and dreams for the future. That's quite a lot to expect a person to accept, or even adjust to, isn't it? And we wonder why it takes us so long to do it!
This probably isn't what you meant by evolution, but right now I can really feel the evolution that has happened to me. The person I was eight years ago, before DH was diagnosed, is gone forever. It's like I evolved into an entirely new species. When the time comes eventually to rejoin the rest of civilization, I don't know if I will ever fit in again. Sometimes when I am around other people, I put on my "normal" disguise, which makes me pass for a normal person. When I get home, I take off that disguise, because it's too uncomfortable and exhausting to wear for a long period of time. I'm hoping that when this whole journey is over, I'll be able to evolve back the other way, back into "me" again. I hope I will have enough time and energy left to do it.
I agree with everything that is written here. I too have traveled this long journey, and had to 'adjust'. It is one of the most difficult thinkgs I have ever had to do. I struggle yet to this day. Joan, why not share this, or something like this with all the other FB friens. There are many readers that do not know about this wonderful web site - or have yet to find us here. I think your words might be helpful to many more than just us old timers. Much love to all - and again thank you Joan for all your are doing, and have done in the past. I will be keeping a copy of today words to share with others who are just starting this journey...
Joan--when I read this excellent blog, one thing jumped out at me. The phrase "adjust or die". Coincidentally, several hours later I noticed an ad for a new movie, "Hanna" and the ad said "adapt or die". Then at my support group meeting, I thought about the slogan "respite or die". I think that any of these would be great, simple but powerful mottos that could be applied to dementia caregiving. Someone should build a public awareness campaign around them!
New member Grendelsma mentioned this blog on evolution so I went back to reread it. Talk about evolving! Recently I have been reading some old emails sent to friends and I am amazed at how far along I am on the acceptance. Two-three years ago I NEVER would have thought I would be so comfortable with our situation. Don't misunderstand. I still hate it, I still mourn the loss of my husband but we are both okay right now. Not sure what tomorrow will bring, but today is okay.
I posted the below in May 2009. How wonderful that I no longer feel as if I am living on the edge of that abyss!
Caring for a spouse with dementia is like living on the edge of an abyss. Every so often I fall in and cannot seem to climb or drag myself out. I lay there and wallow in self-pity, exhaustion, frustration, anger, worry, fear, hopelessness. Rarer still, I manage to crawl out, clean myself off and get on with some semblance of a normal life. But, no matter how hard I work to avoid falling back into it, undoubtedly, I do. Lately it seems that I spend more time inside the abyss than outside; I am more and more exhausted by my efforts to keep my self from dying there.
Hopefully this reflection of mine will give hope to others that better days can lie ahead while still a caregiver. Thanks to all of you who have been here for me. I would never have made it to this point if not for your help.
Weejun, indeed that black abyss is forever in the background -but with a little effort like you say we can pull ourselves out and dust ourselves off to once again face our fears. its always helpful for those behind to know that placement isnt the end and with a little luck- time will help to heal and spouses will adjust to a new environment after painful decisions must be made. every first step is different whether it be adjusting to living alone or involving hospice as end care. last we visited you had indeed made a dramatic recovery and looked so vibrant and much healthier mentally as well as physically. as we know letting go and accepting the situations as they are is key to getting ourselves on the road to recovery. divvi
((Weejun)) isn't that a wonderful feeling?! I recently told my family.... Lynn knows a peace I never will in this world. But, I do believe I have finally reached a place where Alzheimer's has taken all it can from me...... (never thought I would say that!!) I have reached a place where I can handle this disease. I might not win the war, but I am winning more and more battles. And now, it is time for me to reclaim some of what it took.
I have brought this discussion to the top because I have reprinted this blog today - 10/11/11- in an effort to help so many of our newest members who are struggling. Log onto the home page - www.thealzheimerspouse.com - to read it.
Unquestionably, what most of us mean when we say "accept" is adjust and adapt.
Acceptance implies a passivity, and maybe a certain level of contentment. Generally speaking, there is and will be no contentment and there are deliberate actions and steps involved in adjusting and adapting, so you can't really call it passive. Eventually, rather than content, you might at least feel a bit more tranquil.
omg Jan K said it as it is coming out of my mouth and heart, all of it, except for MY failing health, thank God.
I note you have not been here since a month or so JanK and I hope you are ok.
I grabbed on to the virtual rope yesterday and am hanging on for dear life. Maybe you can too. Not really sure how it works but I am taking it.
Weejun thank you for posting your past notes too. I know you still suffer so yet you have moved on to a new phase.
Wolf also made some comments on the other thread, about how you wake up, day seems normal, and then in a moment it can all be gone. (something like that) He also mentioned about sleeping with his favorite cat, yes that is my new bedmate too!
I am copying some of my posts here to email to my best friend in Canada, as she never could let me grieve and go through the process. This is so hard isn't it, when people just look at you like "chin up" stop whining, it could be worse. Well, yes, but it is pretty *$#!! bad.
I look forward to the "except sometimes", though Joan I can see that those are really tough.
I guess I must still be in the denial stage although I know that what is is. He seems to be himself outwardly and can do most of what he has always done, (except drive) OK? Then comes a decision like repairing daughter's car (she has no job) and repairman has always consulted him and I know he doesn't need to be making this decision. So how do I go about stepping in when repairman looks directly at dh and tells him cost, etc. If I butt in dh will be angry, hurt, resentful. These things are touchy. Thankfully this time I said quietly just look it over and call. I answer all phone calls as dh doesn't want to. All is well repair too costly so will have to wait. I find myself expecting dh to be the same although I know the dx. We're new at this - I still can't cry - it just hurts too much to think we'll never be doing the things we enjoyed together ever again. I read all the posts from "veteran" spouses and wonder when if ever I'll come to the acceptance they have found.
flo one of the worse things about this disease is knowing there is no future. we were taught to dream of the 'golden years'- retirement and how we would get to do all the things we saved for all these years or just sit on the porch and rock in peace. somehow it just doesnt register to any of us those dreams are not viable any longer. and that hurt will never go away even if we 'accept' our fate.
I NEVER thought I would ever come to accept or adjust to what was happening to my wonderful husband and marriage. Never, never, never. Not me. I was going to go down fighting. Unfortunately, the "go down" part of the fighting is what did me in. The stress and anxiety of fighting it took such a toll on me, I was having episodes where I couldn't catch my breath. I finally had to adjust or really "go down" and end up in a psych facility myself.... or dead of a stroke.
I was extremely hardheaded, only took 9 TIA strokes to get through to me. When a doctor tells you that you that at age 41 the stress will likely kill you within the year.. well, you have to start looking at your game plan a little more seriously. I did not want to place my husband, he is still the love of my life, he always always will be. But as the wonderful folks here made me see clearly, what good was I going to be to Lynn dead? Who would take care of him when I couldn't?
Some adjustments come easy, some about kill you, but in time we do adapt. I dare say we were all once where are newer members are now. I know I certainly was.... I never dreamed I would be so calm in the face of stage 7. Yet here I am, not destroyed, no longer consumed in grief and anger, no longer dwelling on all we have lost and all we are going to lose. ….Instead I find myself being so very grateful every single day, every single moment, that I am given any little glimmer of "My Lynn" ...
It will never be what it once was, but it will get better than it is right now.... pinky promise ♥
Since I've just joined this website, I'm hardly an expert - but I sure am learning!! Really appreciated this particular blog, just what I need on this particular day. I think it must a REadjusting every day - each one seems to be different from the one before & will be different from the one to come. I personally am trying to learn not to look too far ahead, it's very depressing to know what is most likely to come (although I know I need to keep informed). I keep telling myself "one day at a time" (I talk to myself - is that bad?!!).LOL
I saw your other post too and just wanted to welcome you to a wonderful place of support. I'm 52, my husband is 62. He was diagnosed right before his 59th birthday with frontotemporal dementia (FTD). Each day is a new and different day and not always in a good way. You will learn alot here.
Following is from Wiki and explains my use of the term "acceptance" as relates to the condition my condition is in. (Wasn't that a line in some song?)
"Acceptance is a person's agreement to experience a situation, to follow a process or condition (often a negative or uncomfortable situation) without attempting to change it, protest, or exit."
Early on I tried to change things, I protested loud and long and I even exited for a few months in 2006...but I'm still here, DH is still surviving (placed) and while my health has deteriorated since my April 2011 post, I am still advocating for him and overseeing his care. Yep, acceptance is where I am. It was much too tiring to be anywhere else.