Widowed Village

A community of peers created by the Soaring Spirits Loss Foundation

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Long-term illness

For those widowed by cancer AND other illnesses or long term conditions that required caregiving.

We now also have a "Long Term Illness" discussion forum in the PERENNIAL main forum. Questions? Widville@gmail.com

Members: 630
Latest Activity: 5 hours ago

Group Greeter

Please welcome Patience (Diane) as your group greeter.

Discussion Forum

Retreats?

Started by katjames. Last reply by katjames Jan 18. 12 Replies

Has anyone been to any retreats in the last few years that were especially meaningful and good????   I know there is Camp Widow, but I'm wondering if anyone has any organization they can recommend.…Continue

Grief and release at the same time?

Started by Germaine. Last reply by goingon (Cynthia) Dec 21, 2014. 31 Replies

I am aware of two different forces acting from within me.  One is the downward weight of grief. The other is an upward energy that comes from the release from caregiving.  After 16 years of part time…Continue

I'm Lost

Started by MickeysLove (Sandi). Last reply by my roses Dec 9, 2014. 19 Replies

So, 4 days ago marked the 2 month period.  I had joined a support "group" where you go and sit with other people and talk about whats bothering you. I had went 2 times, I'm not going anymore - I…Continue

Looking to Put Together Resources for soon-to-be-widowed

Started by Mozzie. Last reply by MickeysLove (Sandi) Dec 3, 2014. 32 Replies

I found being the spouse of a terminal person very frustrating.  We were getting care at a prominent hospital, and there were social workers, but I didn't feel like anyone ever gave me useful…Continue

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Comment by Steve on February 22, 2015 at 5:03pm
Hi everyone. So sorry to hear about those back issues Cynthia. I know they are awful. Hoping you continue to improve Diane.
I'm so excited today, it's a very cool, fall day here for a change, blustery, low dark clouds looming by, and blowing by. Pretty bright blue skies inbetween the clouds. I'm hoping and hoping we get some rain. We are in severe droubt here, need the rain so bad and I would really enjoy a good downpour. I wish we could connect a big pipeline to the east coast and vacuum up all the snow and ice and extra water and syphon it over here. Every time it rains here, you see people walking out of their homes and holding their hands out, like in a bible movie, or something, or " the grapes of wrath" lol. I miss the change of seasons so bad, so whenever we get anything like a fall/rainy, cool day it's a pleasure for me. It's a roll of the dice if any water will actually fall from the skies, maybe a few drips here and there, but every once in awhile we come up aces and get some good rain. It's so funny to me, the news programs, because if we get any chance of rain, they treat the few rain clouds we have as a hurricane, "California braces for winter storm"! "STORMWATCH 2015!" They will send all the various mobile reporters out into the streets to interview all the "terrified" California residents, to see how they are dealing with the impending doom". If there happens to be a light 15 min shower, the reporters are out in their parkas and scarves, and umbrellas, giving us poor California residents all kinds of advice of how to deal with this disaster. If there is a slight hill of dirt, maybe 20 ft high, at a construction site, and the earth happens to move slightly down the little hill, they will send all their news crews, to film it in every direction as possible, so they can interrupt tv shows with "emergency alerts". "California is plagued with massive landslides". It's absolutely ridiculous! I have lived in California most of my life, short a 9 yr stint in Indianapolis, and it is not unusual for people to stay home from work or parties, or whatever because it might rain. I have had many lunch, dinner plans cancelled at last minute, because, "didn't you hear steve? It might rain tonite" !
Don't misunderstand me, there have been very serious landslides at time, in various areas, but this is when we have had days and days of rain heavy downpours and the like. There is more a chance of winning the lottery, or being struck by lightening 3 times in the same spot. Anyway, enough of my tirade this morning. Lol
Comment by Patience (Diane) on February 21, 2015 at 9:51pm
Thank you Cynthia-I'm sorry you have been through so much with your back...
((((Hugs)))).
Comment by goingon (Cynthia) on February 21, 2015 at 9:09pm

Diane - Reading about your back problems, and the sciatica, well, been there, done that!  I had a minor surgery in 2002, a laminectomy and discectomy; still had pain.  I had several rounds of epidurals, trying to manage the pain.  They'd work for a while.  One year, I'd have 4 and they don't like to do more than 3 in 6 months, and the doc who was doing those told me I'd have to have the surgery because they weren't helping.  So in 2008, I had a lumbar fusion - fused the lowest two lumbar vertebrae (or so I thought).... I still had on-going pain, was referred to a neurologist who referred me for more epidurals... they would work for a few weeks, but not much more.  I was in terrible pain to go through that again.  I kept telling my surgeon it still hurt and the sciatica was still just as bad; I had to stop a lot of activities I loved - like gardening.... and he said the fusion had taken, and all he could suggest was removing the hardware.  Eventually I moved to Flagstaff, so, 6 years later and a move, and a doc here looked at my recent scans and x-rays and said "well, your fusion isn't fused...."  I was a just a bit pissed off.... so he suggested the only thing at this point was another fusion.  He told me I had other discs higher up that would need fixing in 5 - 10 years. Well, I'm 62.  I told him, if you're going to do surgery, fix anything that needs fixing because i'm not going to do this again.  So now I'm fused from T-10 all the way down, including a pelvic fixation.  It seems to have taken care of my sciatica, but I do get an ache in the back of my left thigh that the physical therapist says is the sciatic nerve; but it's not the sharp, constant aching it was before.  It comes and goes; if I sit too long (like for 2 - 3 hours in a car) then it aches and gets stiff.  But, overall, the majority of my pain now is muscle pain from the surgery.  I have to strengthen the muscles.  I tend to overdue it P.T.; so I have to talk to the physical therapist about that, and I'm swimming when I can to try to strengthen the lateral muscles.  I still use a cane, because when I don't, I get more pain; weak muscles.  I don't know why I'm telling you this; there are a lot of alternatives to fusion now.  There are disc replacements that are FDA approved now.  Physical therapy can help a lot, and there's never ablation, too.  Before you have any surgery, do a lot of research and see what alternatives are available  to you!  Not that you haven't already thought of that.... in any case, good luck with it! The hardest thing for me was going through that surgery without Don here with me.  I went to rehab for a week after the hospital; then hired a nursing student to help me at home for a few weeks.  Neither of my daughters were able to come; one had a baby, the other one, well, that's another story... But if I ever have to have another surgery, I'm not doing it unless I can have a family member come and help me.  They overdosed me in recovery, and I just wanted them to go away and let me go!  But they didn't.  And I have a DNR on file.... oh well.  So here I am, trying to figure out why.  Take care of yourself.  Hugs. 

Comment by goingon (Cynthia) on February 21, 2015 at 8:55pm

Steve - as a therapist I saw so many people who were bipolar and I'd refer them to a psychiatrist for evaluation and possibly meds.  What would happen most commonly was they felt better after being on the meds, and then since they felt better, they'd stop taking them, then complain that they felt lousy again. So I'd always ask, are you still taking your medication?  And of course... "No...."  and I'd try to explain that it's kind of like if you had diabetes, you'd have no problem staying on your insulin, and it's the same thing - your brain just isn't making the right chemicals it needs to function at it's best, so doctors prescribe medication to fix the chemical imbalance...but there will always be people who prefer to self-medicate; Rx meds don't give them the high that illicit drugs do - like cocaine and crack and smack do.  But they'll never get the same high as they got that first time because of how the receptors in the brain works, and they keep looking for it, so they get addicted because they keep using, looking for that first high... it's so sad and I'm so sorry for Mike's nephew that he can't get out of this cycle.  But you're right - there is nothing you or anyone else can do.  When my daughter was dating her now-husband she emailed me from college and told me she was worried he was an alcoholic and how could she help him?  I told her she could go to Al-anon, but that was it. He had to want to help himself, and she couldn't do it for him.  Well, you know the rest.  He's still an alcoholic and he still drinks, but now they have two kids who will someday have to deal with this hereditary illness.  Nothing I can do.  Sigh.  

Comment by Patience (Diane) on February 21, 2015 at 8:40pm
Steve, so sorry to hear about Josh and his struggles.... Praying for a miracle for him too.... And thank you for your wishes for a pain free night! ((((((Hugs)))))
Comment by Steve on February 20, 2015 at 8:11pm
Thanks Diane. Just recd a call from mikes sister in Indpls, we are very close and speak daily via txt and phone. Sadly her eldest son is a heroine addict and she is having a hard time letting go of him. She has been trying to help him for 6 yrs and has gone into debt over 100,000 in 2nd and 3 rd mortgages, has combed the streets of downtown cities for him countless times and has to give up. He just refuses to get help, been thru treatment centers, even though he has died twice from overdose. Sadly it's hopeless at this point and at 23 he is bound for really bad things, possibly death. Mike suffered from severe depression, bi polar issues, and I dealt with addiction problems w him for our yrs together too. Josh reminds us so much of Mike. Personality, temper, the whole thing. Josh has been diagnosed bi polar, but he hates the meds prescribed. So, it's a rough time. What's so bizarre, is that both Mike and josh both are such wonderful people, so loving, kind, sweet, when they are balanced w their meds, but getting them to take them and stay on them are very difficult things....
Anyway, I look at it as its out of our hands, and we just have to appreciate the wonderful times and heavenly times and forgive them for their disease. Hope a miracle happens for josh, that somehow he sees the light and accepts help and love that is waiting from us all. Thanks again and wishing you a pain free night.
Comment by Patience (Diane) on February 20, 2015 at 7:44pm
Steve, thinking of you today on Mike's 56th birthday ..... (((((Hugs))))))
Comment by Steve on February 20, 2015 at 6:39pm
Hi Diane and everyone. I'm so sorry to hear of your back issues and I hope you feel better very soon. Been staying busy today, as its Mikes bday today, he is 56 today. I'm reminded of the very first time I set eyes on him in early December of 1978, he was 19 and I 16. I thought he was the most handsome guy I had ever set eyes on and I felt such a connection to him as we spoke the first time, as if we allready knew each other. Anyway everyone take care
Comment by Patience (Diane) on February 19, 2015 at 9:58pm
Oh my goodness Steve! You have so much going on right now! I'm in my recliner chair following Drs orders... Walking was a little easier today and scheduled for PT tomorrow ... I am glad you were able to get your money back on the "lemon" good for you! I was reading about your search for a contractor for a ramp and some inside renovations. I too was searching for a ramp back in 2012 for Wayne. My research led me to believe that most people rent a ramp (long term rental) because they are very hard to build properly. Maybe that's just in NJ?!
Also, I have had good luck calling friends and getting referrals for contractors. After Wayne died I had to fix up a few things and found that if someone was highly recommended by a good customer of the contractor, that contractor was motivated to show up and get the job done right! I'm so happy that Chris is looking to avoid surgery and has already taken some steps to recovery. Sending hopes that all continues to go well... :-) Diane
Comment by Steve on February 19, 2015 at 9:27pm

Hi Diane, thanks so much for your response and well wishes. I truly appreciate it .  Things are coming together slowly but surely.  Chris and I are now in our new place and we LOVE it.  We are now unpacking, cleaning, setting up kitchen cabinets, and all that fun stuff  Tomorrow I plan on going furniture shopping.  Need to get mom a dresser and chris and I a new dresser, new dining table,(We now have formal dining room that is quite large).  I cant remember if I mentioned before, but I had purchased a brand new Nissan Altima last year that turned out to be a huge lemon.  Long story short I had to hire attorney to file suit, and we settled out of court for entire purchase price of car plus $2000 for hassle.  We finally got settlement check last frday and then Chris and I went car shopping and ended up with a new Dodge Charger !  LOL ! It is a very pretty car, but its loud and a big engine and it scares the heck out of me to drive it. But it was very inexpensive compared to the regular cars im used to getting, its huge inside and has a huge trunk so it will work out fine for us.  I just need to get used to driving it.  Im currently working with contractors, which has proved so frustrating. I have to have ramps installed for moms wheelchair down some stairs from the driveway, and then another small ramp up a stair to the door.  Also have gone thru 2 contractors so far, due to their tardiness and rudeness, trying to find someone to install handicapped rails and such in moms bath, and also need shelves built and hung throughout new apartment, large mirrors hung, artwork, stuff like that.  I cant believe how difficult it is to find a good reliable contractor!  I joined Angies List today and made my first call to a contractor to them today, we shall see how that works out. 

Tomorrow is Mikes birthday, my first partner.  Im trying not to think abou it too much, I have so much going on right now I don't have time for a pity party.  Also Mike passed March 1st 09, so that is approaching.

Chris and I have grown so close lately, he is such a wonderful guy.  I love him a lot  We are getting to know each other now, after 18 months together, to the point that we are teasing each other about our ways of doing things, and it feels good.  We laughed about a circumstance that came up where I tend to be a bit mouthy, to say the least, and Chris said, "You just sit here steve, I will handle this one, don't need the police called out today"!  lol.  That was a bit of an exaggeration, but I got his point.  lol.

Sorry to hear about your sciatica, that sucks, Chris suffers with it and drs keep pushing us towards surgery because of his discs problems, we shall see.  We are trying PT and excersise right now, he has lost 12 lbs and he says he is starting to feel  bit better. 

Tak care and lovehearing from you Diane and everyone.  gnite

  

 

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