jang*, sorry about the mean sister. There is a flip side to that coin. My sister and her husband never stopped loading us up and taking trips to Amish country. They didn't care what anybody thought. He couldn't even feed himself anymore and he used to reach over to my bil's plate in the restaurant. If I tried to stop him, Tom would say to leave him alone - if he wants it, he can have it. My sister used to take one of Lloyd's arms and I would take the other and walk together.
Jang* How unkind for anyone to say the things that were said to you. What is with people!? I wish everyone here on these boards could have the sentiments expressed to me by my stepdaughters...each has been and said how grateful they are that I was there for their dad all these 8 years of caregiving and now it is my turn to have some fun....and they encourage me to take trips ( to see them) or go anywhere my little ol pitypat heart desires...And my husbands siblings feel the same way. I was a little worried that the in laws were now going to be non laws, not outlaw...but nope still considered family..
Some people are jealous, some just hateful. If there are toxic people in your world, cut em loose. Give yourself distance..you have been trough a warzone for a long time and you don't need anyone piling on now...Here is a great big HUG just for you {{{{{{ HUG}}}}}
Whew, I seemed to be doing ok the first few months after my DH's death, but now it is like I am forgetting all the heartache of the last 7 years and am just remembering our good times which is much harder and makes me incredibly sad. People assume you will get better after a couple months, but I am finding it is getting harder!
I've read that the third month after can hit like a ton of bricks, and I found that to be true. It was the worst month ever, though it comes and goes in varying degrees of intensity from then on.
the third month eh? How very insightful I am going to tuck that in my important knowledge space.
Jang* I was thinking about those people and unhappy people. We just have to know when our hearts are in the right place, and OUR actions too. Right now with my Mom very ill too, and horrid horrid family members , I know, that they are screwed up, and I thank God for giving me the right way of thinking.
on a good note, the sisters of Dado who were not nice the first couple of years, are very supportive now.
Hugs to you gorgeous widows and widowers, thanks for your profound knowledge.
I have been told by other widows that it can take up to 7 years. I was alarmed when one friend told me that you wish that you were dead too. I never had that thought and wondered if I wasn't grieving enough or properly.
I've been reading here to help me know what to expect and prepare for after. One question...Coco, where is your important knowledge space located. I'm not sure I have one. :-)
tee hee Dazed...( : my important knowledge space is in there somewhere, you know the one that says you should do right by others but not be stupid, and to not take off your clothes in public etc. etc.) That space that holds on to practical, useful, good knowledge. I know you have one!
Has anyone heard from Marty? His last post was on October 20th and the drs. said Sue only had a few days to live.
Dear Marty, we are thinking of you and want to support you in your time of need. Please let us know how you are doing. We care deeply and understand your pain.
The last two weeks have been emotionally difficult for me, because I knew it was time to make Diane's bedroom over into a true guest bedroom, and take out the rest of her books, souvenirs, pictures of her trips, remaining movies and CDs. I had given away her clothing and shoes in the months after she passed away, but left the other things for "later" and it has taken me until now to finally be ready to do it. I've laughed, teared up, found some things I am keeping, some that I'm giving to her siblings (I gave them most of her movies and books and games 4 years ago). I've rearranged her room, and bought a new bed and chest of drawers to be delivered after Thanksgiving. It was hard for her siblings when they came to visit to sleep in her bed after she was gone, so this will hopefully make it easier. The thing is, I feel like a heavy burden is now lifted from my shoulders. I think somewhere in my heart, I held on to the room staying the same (without clothing and most of her things) to keep her near me. I can now let them go, because she's still here in my heart, and taking care of her dad upstairs. (By the way, I got me a new bedroom suite a month after my husband passed away because it was too hard to sleep in the room we shared. I have never regretted it!)
I can never thank my friends at Joan's enough for their support and caring during that time. Vickie lost her son tragically, and now her husband is going to be meeting mine soon. Big Hugs, Vickie!
mary I hope the new guest room brings you peace dear friend. our memories are safely stored away for futures to enjoy when the time is right. hugs. divvi
Mary, I love you so! I suffered with you when your tragedy occurred and you did with me. I shall never forget that. Our husbands will get along fine and Diane and Kevin will also be with them.
Oh Mary, I just can't imagine how difficult this has been for you.
Vickie, my heart certainly breaks for you and Mary both......losing a child is just "not right". I truly admire both of you wonderful ladies for your strength, faith and courage in dealing with such a horrendous loss.
I am not doing as well as you Mary and you are grieving for 2 people. I look at Gord's stuff and then walk away thinking that I will do it another day. My new plan is to start in the New Year. I am going to Japan for Christmas to be with my son and granddaughter for the first Christmas in 5 years. I have not seen or talked to my granddaughter since July 2008 due to a really brutal divorce. If my ex daughter-in-law doesn't pull the rug out from under us, my son and I should have Reina for almost a week. That will include Christmas Eve and Christmas Day. She has sent me a text asking if we could have lunch, just the 2 of us. She can have anything she wants. YEAH!!!!!!
It really will be. My son has planned so much for us. We are going to Hiroshima by bullet train. Then we are going to Osaka by bullet train. We are going to be at Universal Studios for Christmas Eve and Day. It will be a very different Christmas with none of the problems that exist with family here at Christmas. Our Christmas dinner is going to be at Hard Rock Café in Osaka. It will be wonderful to be with the son who really seems to like me and my granddaughter.
It's just 8 days since Sue's passing and the pain remains as fresh as day number one. Sue suffered from Terminal Restlessness the last weeks of her life. Two teams of MD's at different inpatient Hospice Units tried for more than 3 weeks to come up with a combo of meds that would permit her to put her head on a pillow to sleep and slow her incessant pacing. All failed. She literally went six weeks without getting into bed, sleeping with a board straight rigid back upright in chairs or sleep walking. Trying to keep her at home failed after several teams of around the clock nurses said they couldn't handle the 8 hours of non stop sleep walking and the fall potential. It was only in the skilled nursing home did the Hospice MD's ignore all dosage recommendations to induce a Morphine=Haldol stupor which finally led to her to the comatose condition and subsequent death. The pain from her stomach cancer and her inability to communicate anything must have been sheer terror for her. There is no doubt in my mind she is in a better place now. Terminal restlessness is so distressing because it has a direct negative impact on the dying process. All I wanted was for her death to be a comfortable and peaceful experience, trust me, if your loved one is dying with terminal restlessness, her death is horrific, it is neither peaceful or comfortable! Having watched this process has made me a prime candidate for grief therapy which I start with Hospice on the 2nd. My other priority is putting myself back together physically and mentally. Six years of a life limited to going to our pool, shopping at Publix, an rare night out at a buffet type restaurant and going to MD's has left me a physical wreck and mentally exhausted . Today was my first day on an exercise bike and just doing a lot of stretching it felt good! We have to start somewhere. Sunday I went to an Art Show with a friends wife then out for an elegant lunch, Her husband, a friend for 30 yrs, and ER Doc was working I'm not dating quite so soon.
Oh Marty, how painful it must have been for you to witness Sue's incessant pacing and restlessness. I have never heard of Terminal restlessness and would have thought it impossible for someone in their last days. As we've said before, I'm sure all of us suffer from some form of PTSD caring for our spouses for so many years with this horrible illness, but few if any of us had to deal with what you did. I am very glad you are scheduled for grief therapy, it will definitely help you through the next months.
Now is the time for you to reclaim your life as Wolf says. What a wonderful first step by going to an art show and an elegant lunch with a long time friend. Wishing you peace in the days ahead.
Oh,Marty,myheart goes out to you,A LONG HARD BATTLE YOU HAVE FOUGHT.i,TOO,NEVER HEARD OF TERMINAL RESTLESSNESS. there IS A 71 YR.OLD WOMAN AT THE NH WHERE MY HUSBAND IS A RESIDENT ,SHE WALKS 24 HRS. A DAY,BARELE EATS ANYTHING,i WOULD GUESS THAT IS WHAT IS WRONG WITH HER. SHE WAS JUST ADMITTED A MONTH AGO AND IS GOING DOWN SO QUICKLY. SO SAD.
LFL you are so on target! The Hospice MD who was cared for Sue the last few days said much the same about Post Traumatic Stress when recommending grief therapy. "no one can endure day after day of this without suffering PTSD"
yhounley - Google "terminal restlessness". This horrific syndrome is well documented and explained, albeit in a very very sanitized fashion and can't begin to describe the impact on the caregiver watching their loved one suffering thru the agony and torments as med after med has a paradoxical effect. (ex, sedatives become stimulants). Combine the aphasia and everything else caused by Alzheimer's and pain from cancer immune to the relief morphine usually can be depended upon to deliver and you'll get the picture
marty, sometimes I feel like I have it so hard but when I read your posts and Vickie's, it makes all my problems seem so small. My heart goes out to both of you.
When the good Lord was creating caregivers, he was into his sixth day of overtime, when the angel appeared and said, "You're doing a lot of fiddling around on this one."
And the Lord said, "Have you read the spec on this one? She/he has to be completely washable, but not plastic; have 180 moveable parts, all replaceable; run on black coffee and leftovers; a kiss that can cure anything from a forgotten love affair to a reassurance of their whereabouts; and six pair of hands."
The angel shook her head slowly and said, "Six pairs of hands ...no way."
"It's not the hands that are causing me problems," said the Lord. "It's the three pairs of eyes that caregivers have to have."
"That's on the standard model?" asked the angel.
The Lord nodded. "One pair that sees through closed doors when s/he asks, "What are you doing in there?" when s/he already knows. Another here, in the back of the head that sees what s/he shouldn't, but what s/he has to know, and of course the ones here in front that can look at a loved one when they goofs up and say, "I understand and I love you," without so much as uttering a word."
"Lord," said the angel, touching his sleeve gently, "Rest for now. Tomorrow ...
"I can't," said the Lord. "I'm so close to creating something close to myself. Already I have one who heals them self when they are sick, can feed a un-cooperative loved one with a hamburger and quietly take the cookies away and then can get them in the shower to clean up when the dinner is over."
The angel circled the model of the mother very slowly. "She/he's too soft," she sighed.
"But tough!" said the Lord excitedly. "You cannot imagine what the caregiver can do or endure."
"Can she/he think?"
"Not only think, but s/he can reason and compromise," said the Creator. Finally the angel bent over and ran her finger across the cheek.
"There's a leak," she pronounced. "I told you, you were trying to put too much into this model."
"It's not a leak," said the Lord. "It's a tear."
"What's it for?"
It's for joy, sadness, disappointment, pain, loneliness and pride."
I am ok. Keeping busy trying to get my house in order somewhat and buying groceries! His memorial service will be next Friday. My sister will be here tomorrow; his son/wife flying in from AZ Tuesday. My wonderful ex-priest/wife who have been so supportive of me and officiated at my son's memorial, are flying in from Denver Thurs.and will officiate at his memorial. DH never wanted a long obit - just the facts. So...although I could have written a book about him, his very simple obit can be found at: somersetundertakingco.com
Final insult-going to a large club party in my community club house. I am being seated away from my friends and being put at the widows' table. The fur will fly!!!
Marty--thanks for the point about PTSD. I am sure I have it. While I am mostly happily going on and living life, there are issues and situations that fill me with a physical anxiety, and I came to realize that a sort of PTSD is exactly what's going on.
Emily I attended a Hospice group and Alzheimer's group grief therapy meetings last week. The two groups feelings pretty much agreed that I began grieving the loss of Sue 18 mos ago when she first began to fail to recognize me or our children and lost nearly all her abilities to speak and think rationally . When she required I dressed, bathe and feed her like and infant they say it was then they say you lost your wife and began grieving a long time ago, I'm further along into the process that I thought.
What they feel is impacting me so e closely related to PTSD than to grief. And the more I've talked about my experience: the horrors of Sue's last 8 weeks tormented with Terminal Restlessness and pain from Cancer, the nightmares, the challenges in falling or staying asleep, feelings of unreasonable anger all have begun to fade. No more Ambien :) One suggestion that I laughed at was to join a dating site. I took the advice and I made it very clear in my profile statement that my presence on the site was not to seek a date but was done at the suggestion of a grief therapist just to illustrate that there was a life available in the future. One of the respondent, turned out to live 4 buildings away, she too is a widow, a psychology teacher at a college nearby, and does some counseling. She is the only person I've talked to from the site and has turned to be a great phone friend, nothing more.
Hi folks, I am still here, checking in on occasion. It has been 6 months now and the crying has lessened but emotion evoking memories are EVERYWHERE! Home, shopping, street corners, etc. I keep reminding myself that I have three (3) people to cry for and that it will take much longer than crying for just one. I have noticed that I do cry for them individually as a memory of each comes up.
I wish I had somebody to talk to about the event, however I have learned that people dont want to hear it. Because of the non-traditional circumstances (murder/suicide) and the number of people involved, the listeners become scared and turned off. It is interesting to watch the paleness and shock appear on their face as I tell the tale. They never ask questions and they are quick to change the subject.
There is a coworker who's brother committed suicide last year. We have talked, but her situation was not a murder and she lost just one person. (Kinda like an AD spouse vs an AD child, you seem to need to experience it to actually get it) Interestingly her father has AD (and her mother is taking the long path through denial) so she will be experiencing an AD death soon enough. We DO talk alot about AD.
My problem is extreme loneliness. In my 55 years I have never lived alone. The silence in deafening. I play talk radio continuously just to hear voices. I do know I need to reinvent myself both personally and professionally (everything has been on hold for so long) but I dont know how exactly. Settling the estate (3 dead people makes for some interesting paperwork) is taking up some time. My job is not currently satisfying. FORTUNATELY I am NOT having money problems! If I did it might push me over the edge.
Interesting that you mention a dating site. I went to e-harmony to learn how it works and see what it costs. (never did learn the cost) They have videos that discuss 'safe dating'. Figuring that is something I need to know I watched one. It said that if your dating partner says that they are "recently widowed" BEWARE they are likely a fraud. Well that sure made me feel good!
Anyway, I got lots to work through, but I know I will get there eventually. Thanks for listening, Jim
Good to hear from you Jim! I was thinking about you yesterday, and wondering how you were doing. I don't have any helpful suggestions for you, other than to take your time on reinventing yourself - you have been through a lot, or should I say, more that most, and jumping into something new before you are ready would be equivalent to marrying "on the rebound", an action which usually ends in regret.
Take care of yourself - you know we are all here to support you!
Dear Jim, I'm glad you wrote. You are always on my mind, as I'm sure you are in everyone's heart here on Joan's site. May I suggest the best stress counsellor you can find? You have the professional contacts to find an excellent one. The money, you say, isn't a problem. You deserve to have the best qualified and most helpful person you can find to talk to. Go as often as you need to. Later on, you can decrease the visits. You have had an unbelievable amount of trauma. I still go once a month, and it's almost three years since my husband died. His children and ex-wife put me through hell. These additional traumas on top of the caregiving role takes its toll. We need help recovering. If you lived next door, I'd welcome you in to talk to me every day that you felt like it. But we don't live close. We absolutely need the human touch. A good professional psychologist can provide that, plus a lot of knowledge that the rest of us don't have. Love and the very best to you, my friend.
Thank you Mary, I would visit with you, if you were closer.
Out of all the things that people say to you after a death one person said something I really cherish. Another nurse/educator said . . . . "Your father did it, because he knew you would be OK" . . . . and I know I will be. Jim
Jim, so glad to hear from you. Yes, you've suffered unbelievable losses...a spouse and BOTH parents all at one time! The loss of one would be unbearable but all three at the same time? Unimaginable.
bdq is right, you have plenty of time to reinvent yourself, so take your time. I do believe you'll know when the time is right and what you want to do next. I agree with Mary, a good professional would invaluable to help you work though all you've been through. I know when DH was first diagnosed and my life was turned upside down, I never could have made it through without the help of a counselor.
I found the JHU course interesting and I was surprised at how much I knew about AD. I did well in the course and am looking forward to another one sometime soon. So thanks for alerting us.
Take care of yourself and keep posting...we want to know how you're doing.
Jim I would certainly recommend some sort of professional counseling - your situation is extraordinary and beyond comprehension it was a horrific tragedy.
I on the other hand have a totally opposite historical extreme: I have none of the unresolved conflicts you face daily. My wife, who when still rational and clear thinking, just forgetful, was encouraging me to move on who did not want me to lose a day of living after her passing. She knew what her future held. "We've had a great life! Why should you stop living when I die. MY wife was a women who wanted to commit suicide upon learning she had AD like her mother in order to to save herself and me the horrors of Alzheimer's we talked through that with no outside help, no pills just she and I talking) She accepted her death a second time by denying chemo when dx'd with bowel cancer and was told she had 6 mos. to live We had a unique marriage that enabled me to be her sole caregiver for six years without ever feeling the need for a respite until overwhelmed by the sheer insanity and horrors of Terminal Restlessness. Also our children approved of my dating (never did anything other than talk) while their mom was still alive, but had long ceased to be a "wife"
I spent the first week in tears and then via guidance from Hospice grief counseling really comprehend I had lost my Sue long ago. I was shell shocked by her last months being totally unprepared for the horrific pain and events prior to her passing.
Dating sites - who knows?? I'm no expert. I've never been single and never used one until this experiment. My next date will be my first since I was 16 yrs old. We're all vulnerable as can be, but the counterpoint is, no risk, no reward. I'm sure there will be more pain down the road seeking a new mate, but if you're unwilling to venture out from the nest, and test your wings how else can you learn to fly? \ loved being married for 53 years for all the reasons poets talk about love. I also know I absolutely hate the loneliness, the feeling of being alone in a crowd and... when all the well wishers and friends depart and you've got no one to discuss the evening with is terrible. Will anyone replace Sue absolutely not, is there someone who all wants another to fill the voids in their life out there I certainly hope so. I want someone back in my life, it's been too long since I had a mate I could talk to and anticipate a reply, a mate who could express their affection, a person to resume life with. I refuse to be bound by tradition and will go by my conscience. I have no need to feel any guilt whatsoever about moving on... There will always be a huge void in my life, the only difference will be how often I peer into it. No one would dare question my love and commitment to my wife nor think ill of me for seeking to find joy again now that she's gone is my attitude.
I am truly touched by so many of you sharing such personal stories, struggles, moving on, etc. Your transparency and support are truly helpful in my struggles. I would not be surviving this journey without all of you. Love and blessings.
"he knew you would be OK" . . . . and I know I will be." Early on, I said to my husband, "What you are doing with your kids and ex-wife is going to leave me with a heap of problems,and it isn't doing them any good, either." He said, "Maybe it will be okay. If it isn't, I know you can handle it. I know they can't." And yes, I know you will be okay, too. Hugs.
Today I got an email from a friend who visits a widow/widower website..anyway the thing she sent was sort of a poem in which you put your loved one's name. The gist of it is how some feel when the spotlight is off, everyone has gone back to their lives etc...and when paths cross, how it is that friends no longer even want to say the name of your loved one because it feels uncomfortable... I was just wondering how many here may have that experience. It was 4 months for me yesterday and I have had that experience...someone may ask how I am doing...some days not too bad, I say. But at the same time, I get a sense they don't want me to answer that or would rather say I am doing swell. Some days are not too hard, others are and I still am at loose ends..get things done and then again don't. It doesn't help that I have had an injury that has landed me in PT for dual injuries to my left hip causing sciatica...and just managing house hold routines is far behind... Intellectually I know people care, they just don't know how to just be sometimes.
Dear Mimi, it’s still very soon after Ozzie’s death, and with your injury, life must seem bleak to you at times. I promise you that you will regain your joy and health. I believe that we have an innate desire within to be living with zest again. In a way, I think that’s why people don’t want to talk about those who have died. Instinctively, they know that death is a mystery and that they are called into living fully in the present. I have found that more and more, Eric is a source of strength to me, as if he hasn’t gone, but is a part of me that is alive and available. Much love from your friend, Mary.
Hi everyone. It has been quite awhile since I have been on this site. Now I come with a star behind my name. I lost my dear husband Rodney on Oct. 25, 2013. He had a hard end but now he is whole again. My reason for coming back is to let everyone know how much I appreciate this site for all the information, love, concern, and care that is given to everyone by everyone. I could never have made it without all of you. The second reason I come here is because now there is a new issue. I also feel out of place with my dh gone. I thought I was grieving him when he was alive but now that he is gone I REALLY know that I am grieving him even more but differently. This is no fun either. I know the disease took a lot from both him and me but until the end comes do you really know how much it has taken from you, the caregiver. I know I will be reading more and more of these post to gain insite into this grieving process. I also agree with your idea of different sites Wolf, I think it could help many of us. Well I will end for now but wish all of you a Merry Christmas, Happy Holiday Season or whatever you may celebrate at this time of year. I love all of you and just want you to know.
mammie, thanks for updating us, so very sorry for your loss of your dear Rodney. Please visit us when you can...the members who've been through the journey to the end always have such invaluable insight and wisdom to offer those of us still on the journey. (((HUGS)))
It's good to hear from you again, Mammie. You had a long journey on this road until Rodney's release from this disease. May you be comforted that you fought the good fight and ran the race. I hope you'll keep in touch and let us know how you are and what you're doing. Much love from your friends here.
This is the second holiday season since my husband died. I don't really remember much of how I felt last year. Maybe I didn't feel much of anything or maybe I put up a wall against whatever my feelings might have been.
My husbands life with FTD was not at all peaceful and his death was not peaceful either. He fought so hard against all of his losses, right up until the last moment. I lived in at least apprehension, if not fear, especially those last years. Now some memories of "before" are surfacing.
I've found a lot in the topic "December". Jazzy posted about "not ever again" and that is a concept and reality that I think about and cry about now. Jan K posted: "One year slides into two, and before you know it you've added a decade to that one year or two. It's hard to calculate the cost of a sacrifice like that. . . This is brutal, too, but it goes on and on and on....And in the end, you still lose the one you love, which doesn't seem a fair trade for the sacrifice." She was posting about some of her experiences with her husband this holiday season. For me though, it rang true; a testament of what we share on each side of the *.
Thank you for trhe sweet words, Mary75*..I know what you say is true...it is still fresh and raw. I have put as much effort into Christmas this year as I can muster up. The cards went out and small gifts this year to friends....and the kids all got sentimental gifts, things that belonged to their dad with one new item in the mix. As for me, I am going to get my tree up..Ozzie loved his tree and would want to see me get it up...and on Christmas Morning, since I am alone this year with the kids either overseas or on the East Coast and my brothers in TX and I can't travel yet, I am going to the cemetery with a picnic lunch for me and I am taking a floral of some kind...I'll go again 4 days later which is my birthday and if possible on the 1st as that would be our 37th Anniversary.
Mammie, hugs to you. It has been a hard journey this year for all of us who have lost our LO. You are so right, we all grieve our LO as the diseases they have progress but there is nothing quite like that one final hurdle at the end when we can no longer touch them or hear their voice etc...it gives a whole new meaning to the word final.
Any of the more recent widows and widowers been experiencing physical issues... I was tripped by a kid, accidentally resulted , broken wrist and other odd and sundry minor bangs... ER Doc says very common to take a fall, accidentally cut one's self etc after the recent loss of a loved one. anyone ever hear of this?