Hi Gourdchipper, perhaps as time passes, the good memories surface. I have a lot of those as well. I was on a tour of the hospital where I will be doing a different type of volunteering to the one I am already doing. When we went into an in-patient section, I was floored by how quickly all the memories of those last days hit me. I had to leave the tour until they returned from those units. I wonder if things come up which we did not deal with at the time and now we have to deal with them.
I am so glad for you that you are on a new and different happy journey.
I am on my way to pick up a widow whose husband passed away yesterday. I am taking her to the same funeral home that took care of my Bill's arrangements. I don't know how I will react to being there. Her husband loved my two red cats (now sadly gone) and would come to visit them. I have tucked Dennis' collar in my purse and if the time is right will offer it to the widow to be buried with her husband.
I too am struck by what brings on a flood of emotions. This past weekend I returned to where we were married. I walk into the hotel and returned to the room where we took our vows. I was remined by the Garth Brooks song...."I would of miss the pain but I'd had to miss the dance" It was then I realized that knowing then what I know now I'd done it all again. Only thing different .....would of put vinyl in bedroom sooner :) really that's it. I become over whelmed with saddness for me that the rest of my life without him but when I think of where the disease was going I know that he chose to depart when the oppourtunity came. I do believe the nightmare of EOAD is awareness for the person with the disease. I now look to my next direction, my next purpose for my life ......I believe I will find it....I believe my heart will remain broken forever but life will go on and I will move forward
Dennis' collar will be buried with his friend. I was ok in the furneral home and got to spend some time at Bill's grave. The visits always give me comfort. As my custom I put some new shells on the marker.
Well for my DH he knew, knew he was sick, knew he was failing quickly and knew that he was going to die soon. He was only clueless on where to pee :) He articulated these things to me, his daily carepersons and his closest friend. I think what a torture that was for him. I always thought it would be a blessing not to be so aware of ones own illness and decline. That's why I think when he had the chance he left this world. They called it "terminal aggression" .....I call it complete sadness for me. I am ok with his choice and I do believe it was his choice and I am sorry he had to make that choice.
I am also glad things went well for you bluedaze*. I can't imagine how you must have felt. Terry54*, it is good to hear others have hope for their future. Those of us without our star really need that. It gives us hope.....
thank all of you for all the hope and kind words of wisdom that you pass on......
To all the folks with stars an all others that read this page,after my wife passed a hospice worker gave me a CD with very soothing hymns an sounds,told me when things arn't going well to just pop the CD in an relax an listen,I offered copies of this here before an some might not have seen it,anyone that would like a copy just email me address an I'll send one PDQ no charge,just want everyone to enjoy it as I have
bluedaze, what a thoughtful gift for Dennis, his friend and the wife. You always seem to know how to do the right thing. I have always been a caring person but I fear that dealing with DH's disease (several years before we knew there was anything wrong) for these years has hardened my heart. Yet another casuality of this disease.
I seem to be having more difficulty with having lost Gord as I approach the year anniversary. I was reading a heartbreaking article in the paper today about a young man who started seeing they symptoms of Huntington's. He knew that he had the gene like his father. He had discussed with his wife ending his own life before the symptoms became such that he could no longer do it himself. He did end his life and she said in the article that while she knew intellectually that he was gone, it took her heart and body a very, very long time to know. I guess that is why I have felt that he is just away somewhere. The moments are coming more and more when I realize that I will never see him again and the pain is unbearable. I guess my heart and body are finally catching up.
ol don* I just read about your offer of the music cd. I emailed the information to you. Thank you so much for this offer. Take care and may your week be a blessed one....
It's been 19 months now since Eric died, and it seems he is closer to me now than when he was alive. It's the same with my mother who has been dead for 22 years. It's as if their essence stays with you, as the other drops away.
jang* it is unbearable, a broken heart that will never heal is unbearable. And I can only speak for myself.....it will never heal. I get weary of the comments from well meaning people who haven't a clue. People who think they know, people who think our situation is like cancers, accidents, etc.. Alas it is not, we wouldn't wish this disease on anyone or any family. But life does go on but with a huge hole. I smile at everyone (for let's face it that's what they want to see) listen and thank them for caring...........but inside I say "my broken heart will never mend and my life must go on without him" I want to see color again, I know my love would want me to live and have fun and be happy. But where is that.....I don't know, I really don't know..........
Terry, I find it is sad that so few people want to really hear how we are feeling. It hasn't been long for you and only almost 11 months for me. It seems that so many of us here lost our loved ones in a small space of time. I guess we just have to go with the pain and see where it takes us. I was watching TV last night and something about a man's hair reminded me of Gord's. I could almost feel how thin and silky it was when I combed his hair in the morning. These vivid memories are popping up more and more.
jang, so true how vivid the memories are and how deep the pain is. Tomorrow I leave for North Carolina, to celebrate Hubby's birthday that would of been Monday. This trip was planned back in February and I think it's important to go say goodbye to a place that was very special to us. But I am getting tired of saying Goodbye to my old life. When does surviors remorse lift? Don't know what the new life will be......am I pressing to much to have answers??? Jang what is your Day like? what do you do to fill the hours? I still work full time, it's nights and weekends that echo he's gone ........
Hi Terry, I don't know when anything lifts. It is almost 11 months and it is getting tougher. The evenings and weekends are difficult. I am doing my volunteer work one day a week and will add another once I have survived October. Two nights a week and one day of the weekend, I help friends do their cleaning jobs. That means that after we are done, we go for coffee. By the time I get home those nights, I am ready for bed. If there is nothing on the weekend, I plan to go to any mall and just wander and sit with a coffee and watch the world go by. I make sure I have plans in place to keep me busy. Some evenings, I walk way out of my way to go to have coffee. That can kill a couple of hours. Of course, with the days getting shorter, that will be more difficult. I think we have to plan our days, weeks, evenings and weekends by reaching out to friends and family and having standbye plans for the times that we are alone. Hang in there. It isn't easy.
Only seven months for me but sunday in church one of the hymns was "What a Friend we have in Jesus" this was also sung at wifes funeral service,I tried to sing but was just too hard,differant things kind of set me off,doesn't seem to matter where I'm at,anyone else going thru this..............
ol don---long ago, when we lost my Dad at 50, several of us had things like that happen. Worst for me then, was answering the phone at work, and hearing his voice. I nearly threw the phone the first time it happened. It was a very nice older gent who frequented the library alot. His voice qualities over the phone were a perfect match to myt Dad's.
With all the hugechanges happening so close together--DH going to Hospital then NH; House in a Short Sale; aprtment hunting and moving; then losing DH in July, just before sale was finalized, I'm finding a few little thngs that get me, but more I'm having little upsets because I'm not bumping up on things. So much was downsized from the move . . . So much is just missing....It's just going to take time.
Don't think I have posted on this thread before. Wow....it has just been three weeks today since I lost my Jim. Didn't really expect much except sorrow this early and that is what I have. My heart is in two pieces at least...please tell me it will mend. Mornings are fine and I do sleep well which is a blessing. But, I begin the fight to stay focus around 1:00 in the afternoon and it is a struggle until I go to bed. I do not want to wallow in this grief, but it has consumed me. All I can keep saying to myself in my head is: "Is this all there is?"
I am so stressed with all these forms that I need to fill out and going through all the things that Jim left behind. He kept every piece of paper for years. My dog has also kind of gone off the deep end. She really favored me and when he was alive and we use to laugh about it...but, now she wants nothing to do with me. It is like she thinks I have done something to Jim. She stands at the door to the master bathroom and just stares because that is where there was so much activity with the caregivers grooming him, etc. for the last week or weeks of his life.
Thanks for listening to me....got to go cry some more.
Judith, if physically you are OK with walking, I highly recommend it. My son started me walking days after Gord's funeral. I still do it. I get out of bed by 6 and am out the door by 7. I walk as hard as I can for 35-40 minutes. It is a Godsend. I talk to him in my mind as I walk and most times, I feel that maybe I can cope. I think it has helped me immensely.
Fay, thank you so much for your kind offer. I ordered it this morning right after I read your post about the book. That was so kind and thoughtful of you.
I know more about cats than dogs, but my guess is that your sweet dog smells that your Jim was in the master bathroom. Do you keep the door to it closed, and open or closed, is is different from the previous pattern?
My husband and I had separate rooms for some time but I always spent a lot of time sitting with him on his bed and the cats would jump up and down and visit. They would often lie there and sleep with him too. Now I basically never go in that room except to dust and maybe look for something in the closet. THEY never go in unless I am in there. I thought they would love having that bed to themselves but even though the nights are not even close to cool, they plaster themselves against me (I'm not complaining).
My husband had a big mission style lounge chair in the room where the big screen tv is. The cats will literally walk circles around it. I never sit in that room or in that chair but sometimes I walk by and swear that it still has his scent.
As for his bathroom-I've not yet opened the door to it except to spray lysol in there once a day.
Charlotte, one of my cats takes prozac- but for spraying, not depression. And I'm not raiding his supply- not yet anyway...
Sorry to say...but the bath off the master bedroom has no door. Terrible isn't it? These newer home in Calif. seem to think that is cool I guess. The toliet area has a door. But no door from bedroom to bathroom and the shower is all see-through glass. I hate it...but, that is the way it is.
@ FayeBay, thank you for the book ideas, just got the one you recommended yesterday and look forward to the insight and help I think it will be. @ Abby, my heart breaks for the unresolved issue's you feel. I wish I could say something that might bring you comfort. We have all traveled this journey doing the best we could under the most horrible circumstances. Acceptance to what you can't change is a slow and diffcult journey filled with lots of tears and gut wretching pain, @Jang, I too have found walking to help with meditation and clearer thinking. Plus the extra added benefit to walking or any cardio exercise is it helps with depression. I spent last week away with family to celebrate DH birthday, he would of been 63. I wanted to go home as soon as we got there, I didn't and really didn't enjoy it but realized I was saying good-bye to my former life. My life as a couple, wife, caregiver and goodbye to my best friend. Life is going on and my new journey (what ever that may) is beginning. I am having an elderly but much loved Uncle move in to my home in November. He's 85 and has many health issues, he needs a loving home to make him happy and comfortable he comes with a caregiver (my brother), I can and will provide that home for him. As one journey ends another begins.
Terry54, you were a wonderful caregiver for your husband. Now, you are taking on another. Such a loving thing to do with your uncle. Bless you - and prayers for strength.
Bluedaze and Vicki your comments are kind but I do believe everyone deserves to be surrounded by love ones at the end of there journey. Alzheimers has taught me a lot about whats important in life. This is the kindest man and an equal to being a parent to me. I can't help his broken heart (medical) his faultering kidneys or his diabetes but I can offer companionship when his beloved Yankees play or NY Jets (not my teams).....I can walk his dog and make sure he has sugar free cookies. My darling Uncle is the single uncle who never married but took care of everyone else. The irony my DH always said he'd go before my Uncle. Funny hugh? And to FayeBay that book is excellent :)
Terry54, I'm glad you like the book. I would hate to cause someone to spend their money other wise. I've bought a lot of books but this one has really helped me to understand that my feelings are normal and that responses to grief are as individual as we each are.
I just got back Monday evening from a trip up to northern Ca. to see my daughter, granddaughter/hubby and their two girls. Yes...as soon as I stepped off the plane, I said to myself. I wish I were home. Drew a deep breath and forged ahead. It ended up being a very, very nice retreat for me. My daughter and I had a few drinks on Sun. night, well....maybe more then a few and I haven't had drinks for years. We purged our souls and then the next day I was sicker then a dog and purged my insides. I came home a "clean" lady.
Just about the time I think I can handle this something comes up that just tears me up. Guess that is normal. I did buy a new couch and chair that was delievered right after I got home. The other couch and chair were Jim's favorites and it was just so depressing to look at them without him sitting there. My little Sophie (dog) has finally accepted it is just the two of us.
You can't believe the problem I am having with Social Security. I don't even want to try and explain it to you because I don't even understand what their problem is. One gal even said I might owe SS over a hundred thousand dollars....needless to say I have been doing research and probably can get a job working for SS because I am learning more then I ever wanted to know about SS. As horrible as this sounds, and trust me it is horrible, it keeps my mind busy trying to figure out how they come up with some of the conclusions they are making.
Judith-the most you might own SS is the last month. Please let us know how it all works out. My biggest problem was getting utilities changed to my name . My husband set them up using his social security number and I had to give them copies of Bill's death certificate before they would change things. Didn't matter that I was the one who had been paying the bills. Leave your husband's name on your bank accounts for as long as they will let you. You will need a place to deposit any checks that come in your husband's name.
blue this thing with SS isn't about the last month payment. Briefly, this is because I had retired from a city in Ca. and they are claiming that my retirement should have been reduced by two thirds all the time I was getting SS off my husbands work. I had to take early disability retirement in 1979 It would amount to over a $100,000. It has something to do with the OFFSET rule Congress adopted in 1977.. However, Congress realized what a bad thing to spring on people just as they were retiring so they then adopted a 5 year grace period to allow people to make choices. Either quit Gov. work or take the hit on their retirement if they planned on getting SS from their spouses work. It seems I may fall within that 5 year grace period... but, who knows. If worse comes to worse I will just have to go back to my Elder Attorney and have him figure it out.
Oh, Terry, you are wonderful, what you are doing for your Uncle is wonderful. The Yankees. Oh gosh, our team. We both grew up north of NYC, in different towns, but still not in Bosox territory and not in Mets territory. At this time of year a lot of our attention was on the Yankees. This year, despite an add-on that I really should cancel from Comcast, I can't even watch.
Judith, my situation with SS is not nearly as complicated as yours. H had received ssd payments; I have learned this is much different from ssi payments. Once he died they backcharged me a month. Payments are GONE! It does not matter how long he paid into the system. MarilyninMD explained the situation to me here now a few months ago.
Until I am 60 I cannot collect anything. That I was his spouse (married more than 20 years) or designated benefit does not mean a thing. At 60 I can collect a lesser % , at 62 it would be a bit more, but not the full amount he was getting until I am 68(?) A very friendly ss rep told me "we have no provisions for "young" widows" oh-kay.
The SS gal called me today to tell me the other dept. (the dept. that will determine if I may owe lots of money to) will be calling me soon so keep my papers all handy and at the ready. She said they might forgive the money thing because it was their mistake and because of my age. I am not counting on anything until this night mare is over.
Good luck, Judith. In the big scheme of things the money you received still wouldn’t make a dent n the trillions of dollars in debt this country is in. Anyway, they would probably just give it to someone who never paid into the system......isn't that the way it works? Just sayin”..........
I know what you are saying....but, the disgusting thing about this besidess the money factor is that it is a mistake by the social security people....not a mistake by me or misinformation I gave them...they made a mistake and now years later they want me to pay them back. I am beside myself.
Judith--I worked for SSA for 32 years and I think they will most likely forgive the overpayment. There was no attempt at fraud on your part and they have already said it was their mistake. See what they tell you before spending $$$ on an attorney. Yours is an unusual situation and you should not be penalized for the Gov't's error.
I don't know how to add the * to my name but I added it in my heart Oct. 2 when Frank passed from this life. It was our second son's birthday. We - my two sons and I - have just returned from the graveside services held in another state. It is a 12 hr. drive and with all the stops it amounts to about 15 hrs on the road. So tiring. Of course I am still exhausted from the two week illness before his passing. I've been interested in everyone's comments here. I really have more in common with this group than when I was an Alz. spouse as he did not have all the issues that others do. But when our loved one is gone then we are all in the same boat. I'll be interested in reading how others cope. My time is just beginning and I dread just going out of this house and seeing others. (someone please tell me how to add the * - thanks)
Judith if this was there mistake (and clearly it was) you should not pay anything back, if they proceed you proceed by contacting your Senator and or Congressman from your State and ask him to get involved. If you stay on them (your elected official of choice) they can do things that might surprise you and they know who to contact to get things changed. Flo welcome to this side of the disease. It's different and still so very difficult. I just finished the book Faybay suggested and found it extremely helpsful. Just be prepaired for all kinds of stupid things people will say to you. Example: My cousin (a therapist no less) "Well Terry things must be soooo much better for you now?" what an idiot I actually in a nasty way (unlike me) said " my life is in mourning and grieving..........my acceptance of what is IS but my saddness is still very raw and I live with that each day".......I wanted to add but didn't "you idiot". All of this is part of the journey...............
You are so right Terry. If they haven't travelled this road, they know nothing of the journey. One may think they are doing so well and then out of the blue, tears flow and your heart breaks in two. I understand time will lessen the hurt...but, so many of us are in the raw strange.
Hello! It has been a long time since I checked in. I decided sometime ago that I needed to try to move on from the world of dementia or I never would. I say a prayer each night for all families who have loved ones suffering from this devastating disease. It was a year October 12th, at age 60 years old, that I lost the love of my life & best friend, of 43 years. I still think of him everyday & wish he was still with me, however, whole & not the shell of a man he had become. I spent the anniversary of his death, watching my oldest grandson play football on Senior night. Before the game he told me he was playing for him tonight. Also, noticed he had his wrist taped with 10/12/11 written on it. My husband never was able to see him play, however, we all knew he watching watching with pride from heaven. I stayed in Georgia, for 3 weeks enjoying my grandchildren's activities that I had missed the last 10 years. I am thinking of going after Christmas for a couple months. I want to send my sympathy to the ones who have lost loved ones, since I last checked in. I can't thank everyone enough for the friendship you have shown me, I would never have made it without friends like you all. Remember, you will always be in my prayers. Lots of Hugs! Kadee