How to use this board

[SunshineH]

Welcome back getlost.

[LarryB]

Welcome HOME (((getlost)))

You most definitely SHOULD be on here. We are all too busy to do what we want, but sometimes we have to do what we need.

Post and read when you can. It will lighten your load and you can help others.

Larry

[maureen60]

I can't believe that I haven't been on here since my first post in July. This is now my second post, and so much has happened!!! My hubby has now started palliative chemo...
Can someone pls tell me how to change my password? A huge Thank You to Richard for helping me find my way back here... But when I try to click on My Profile, nothing happens.
I'm so relieved to have found my way back to this site!!!!!
Hugs to you all.
Maureen

[SunshineH]

Glad you are back Maureen. Richard should be able to help you with your profile and password.

[lindalady]

You can also try sending a PM to EasygoingEric. He's good with the technical stuff too.
Welcome!
Linda

[maureen60]

Thank you so much everybody - especially for the welcome back and suggestions. I have been in contact with Richard and the problem seems to be the fact that I'm using a Mac!!! He has assured me that they're working on it.
Big hugs to you all.
Maureen xxx

[hp]

Happy Thanksgiving! Gobble gobble!

I love this website. Just reading has been a huge sanity saver!

[LarryB]

Hi hp, welcome to our family. Glad you have made your first post. Please feel free to start a thread in Help and Healing (our most widely read forum) and introduce yourself to us.

Happy Turkey day back at ya!

Larry

[Tecumseh]

Hello, WSA!
I will probably mess this reply up but feel I can wait no longer to figure out how things work on this site. Actually I am now a FWS since I am quite recently divorced from my IS. I still love and care for him but am now safe from the ravages of misapplication of the spousal impoverishment law or division of assets law in our particular situation.

Tomorrow morning IS has "very high risk" surgery to quote the surgeon, well, perhaps if she hasn't changed her mind again he will undergo surgery. How can I convey the distress of hearing a loved one talking in his sleep, dreaming that he is already dead while enjoying the view of a feast after his own funeral? What about when he instructs you that after the 21 gun salute to give the folded flag to his son? And spend your weekend listing to whom he will bequeath his belongings because he just could not get around to it? Ever? Yes, my IS is a veteran from the Vietnam era, hence the reference to a salute.

Of course WSA members understand. Thank God I have someone (someMANY) who absolutely DO understand! I am aware of caregiver support from the VA and IS has benefitted enormously from VA medical services who will be paying for this surgery and have paid for all his other surgeries too. As far as caregivers go, however, the VA has fallen short of the mark, in my opinion, after 39 months of caregiving. I agree that most people, in general, do not understanding the WS situation either. Kind of like all hat and no cattle.

I loved attending an Alzheimer's support group meeting once late last summer even though it did not fit my IS' illness, it was the next best thing and I knew they understood and ... they cared so much. I was very touched by their concern. After 36 months I had finally found people who actually cared besides a couple of very close friends who have known me for years and they understood, they understood even though it was their parents they cared for, not their spouse. Then I had to go back to work because school started again and there are no such meetings around here at night, so I have fond memories. Thank you WSA for being there and being here now.

I am very interested in what WSA readers say when someone informs you that "we're ALL going to die someday" when you express concern for your IS. Or when a former WS family member (really!) caustically questions you "What is the difference between 9 months and 36 months?" as if there is no difference of experience in an acute terminal illness vs. the long goodbye from a caregiver's point of view. Especially if they could not care less to hear your answer. Dog in the manger attitude and all.

People have said, "Get respite care." That is easier said than done. My dad was recently diagnosed with aggressive inoperable brain cancer so there are now two very sick important men in my life. Although I am not the primary caregiver for Dad, double trouble is heaped on my plate regardless. Both my father and IS are at the end stage at the same time.

I would rather be on WSA website than Facebook. I hope you see this as a compliment. I work many hours weekly and spare time is something other people have and I would like some of it. I read post after post in the few months prior to posting this. I have benefitted from you all very, very much. Thank you. I love Mainstay too.

[LarryB]

Welcome Tecumseh

Best wishes and healing thoughts for your FIS surgery today. Many WS divorce their IS and still remain dedicated to their care and well-being. Congratulations for caring for you too!

I do want to discuss RESPITE a little. You say you cannot take respite because you are caring for IS, and Dad has Alzheimers. PRIORITIZE
You cannot do it all alone. You cannot carry FIS, your own needs and Dad at one time. You need to make a few 'trips' to carry that much weight. No respite=no Tecumseh! Then what happens to FIS and Dad?

You must consider your own needs - even if it is for a weekend off, a walk in the woods, a trip to the movies with friends.

I wish I had answers for the clueless. The difference between 9 and 36 months? Anticipatory grieving and psychic trauma. While it is true all of us will die someday most people do not know when or how, and most people can live full lives till the end (or near to it). Long term illness/injury drain joy and happiness. When everything is a struggle nothing is good. We can always ship you the cluebat, studded with nails, for use on the clueless. Hopefully, as we expand our presence and the population ages more of the public will come to understand and support everyone that is ill and their caregivers.

Glad you found us and hope to see more of your posts. Let us know how the surgery went.

Larry

[Dorothy Saunders]

Welcome, Tecumseh!
I am so glad that you are finding support here and now feel comfortable enough to post.

[ethericjourneys]

Welcome Tecumseh to the club nobody wants to join.

You've found a safe place where we all get it. We may not have all the answers (though some do, such as LarryB and Dorothy ) but we're here to lean on and listen to times you want to vent.

OH! And give hugs...that's what we do best!

Hope to hear from you more. We look forward to getting to know you.

(((((((((((((((Tecumseh))))))))))))))

[kitty]

(((Tecumseh)))

[patrickd88]

Welcome. Sorry you're here, but at least it's a place we can vent it out.

[wheeliezdryver73]

welcome!!!

keep reading, and keep posting when you can!!

Looking forward to getting to know you & sharing support!

agree with Larry about respite-- even if it is only a few minutes away, or a few hours. you NEED to do something for you!
I speak from experience, having been doing this a LONG time.

I had a[nother] breakdown last Thurs. night,. I knew at that point I needed break. So, I told myself I would see what movies were playing the next afternoon, and instead of putting it off, or saying 'i'm too tired' like usual, I went to the movies! That time away helped a LOT, but not as much as a needed... but it has continued to bouy me up EVERY day since!!! I NEED to do things like this more often.... I am too close to burnout!!!!!!!