Thanks, Andy. I guess I am still working on grief recovery. I am experiencing the items on the list, doing better with some than others. dking*---I am praying for your Jackie and for you two as a couple. May good health and much happiness be yours. Good advice Nancy B and Gourdchipper, but I'm not there yet and not thinking of matching up either. But you have given me some food for thought.
Today I am adding my *. It has been a long journey and I know there will be many changes going on in my life. All of you helped me along the way and you have laid out a path for me to follow. I am so grateful to have all of you in my life and I feel like you are truly family and I love ya'll.
Thanks for letting us know that you are still a part of us. It's a hard-won star, but a testimony to the courage, tenacity and love all caregivers share. Thinking of you with love.
I don't get a star. My wife is reduced to not knowing me from adam. I sit in the residence holding her hand while she pulls back and forth in the light wheelchair she is seat belted into so she doesn't completely wear herself out and suddenly 'walks' off in it down the hall and goes into someone else's room. I get to feed her a banana because I know she will eat a banana anywhere anytime and that tiny slim thread of reality is still here.
What I get in quick succession is the horror of realizing I can't go on by myself, placing my soulmate and only person I have truly loved into a home, having the reality of everything that has happened wash over me in powerful waves now that I'm no longer up to my neck clinging hourly to what was, and having the stark realization that I am completely alone in a world I don't fit in and can do nothing but watch that she is cared for (they're great thank god) and wait for her to pass hoping it isn't too hard on her without much hope.
What is my situation called? I no longer belong to the main board where they are talking about the hardships we all know so well because I cannot relay my stories about taking care of her because that is not my life. I cannot relate to the idea that I am now taking care of her in the residence because even though I walk her and visit, she doesn't know anyone and is in her own world. They have tons of staff and are always in and amongst all the residents. I am neither single nor widowed but I am indistinguishable from either. I cannot go forward because I am not free. I can't think in those terms because I'm married and frankly a mess as a person. I'm just beginning to understand what I've gone through for five years, never mind that I'm alone, or that I'll need a life eventually and after 5 years in a bunker where the shelling increased steadily until it suddenly stopped - I have no solid ground to stand on except to keep eating, paying the bills, and feeding the cats.
Aside from the depression that's been biting my ankles for years now and wants to move in, I find so many things up in the air mentally that the fringes of sanity and normality are fraying and even at times flapping loudly in the wind. I'm so used to seriously bad things happening and getting worse without being able to afford a single shred of hope or having any power whatever in them that I have no idea to what extent I've changed - only that I can't recognize that person who used to know what normal is. And that this alienation of myself doesn't go away because that is the truth and even as I'm trying to catch up to it - it is going to continue to change.
And even though all of this is true and these two months have so profoundly been the worst period of my life I've had to endure - I also feel the survivor guilt. That deep anguish that I am here stuffing my face, watching TV, talking to friends and family, and feeling the wind on my face and that thrill to be alive, to open the paper and enter all those lives and stop for a moment to wonder how it feels to be on a cruise ship run aground or whether that particle really did go faster than light.
The same reality that for so long was easy can get really intense. Who would have thought?
Wolf, I understand what you are saying. You are one of the fortunate people who can express with words what you are feeling. I tend to keep my thoughts bottled up inside. I am only comfortable sharing positive thoughts. I know it would be more healthy to really express what I am feeling but it is not easy for me.
Wolf,my wife just passed a few weeks ago,the last week at hospice she was comatose,the only time she moved was when the nurses turned her every two hours,eyes closed,just a body laying there looking at her,the morning she passed two of my daughters were there praying an thought they would sing some hymns when they started she made a noise,she was heavily involved in music so the girls who can't sing a lick thought she was either thanking them or telling them to please stop,a few minutes later they called me an said Dad get back here quick Margie is waiting for you,not knowing what to expect I ran into her room,her eyes were open an she raised her hand to hold mine took 2-3 deep breathes an passed,I'm convinced even tho there doesn't seem to be any life there,their still with us,it was a moment I'll carry with me to the grave,a social worker told me it was as if Jesus had her hand leading her to heaven an she wanted me to know it was alright
Wolf--you asked what your situation is called. I like the phrase Barry Petersen (author of Jan's Story) used and have applied it to myself since I moved Steve to the ALF. It's something like this: seperated--not by lack of love--but by circumstances.
Ol Don*, your story always moves me. It also reinforces what I already deeply believe... that our loved ones ARE "still in there". That is why I go in almost every day. I think it is vital they hear our voice and feel our touch. It is also why though it is true I no longer give care 24/7, I do still consider myself his caregiver, his advocate, his protector and his wife.
Marilyn, I really like that!!
Wolf, it hurts... you still belong on the "main board", there are many of us down there.....
Bama, I do think at least going through the truths inside ourselves is healthy.
Don, I know you lost Margie a little while ago. I'm just struck by how I have absolutely nothing of her as though she has passed in all but name. I go there and spend time but it's both painful and extremely limited because she really doesn't know anyone anymore. I can't imagine what the impact will be when she is allowed to pass.
Marylin, that's the point. Is your life not also now that in almost all ways you are on your own.
Nikki, I'll be back there. These last two months have been tough as they should be; but, time will have it's effect and we get used to things. If we were to look up what I first wrote on the AS board, we'd see that I wanted to protect my spirit through. That's what I would call the lively or interested soul. In me that's the part that writes. I get to find out in these coming months whether I can continue with real spirit or whether I'm dragging my butt through life.
Wolf--Certainly yes, now I'm mostly on my own. I do a lot of socializing with girlfriends and even couples, have started travelling and having dinner parties, etc., but it's not as gratifying as with my husband. I don't really consider myself married--the man I married is mostly gone. I consider myself seperated. I just started going in public without wearing a wedding band--after 35 years--it seems weird, but it's a baby step to acceptance of this in between stage. I went to a jewelry show last weekend to try to get ideas for redesigning the band for the next phase of my life.
I agree with Don that even if they don't seem like they're still "inside there", in some ways, they must be. Finally, after approx. 6 years of various levels of grouchiness due to AD, Steve's sweet, friendly personality is back. It seems like a miracle. He does still recognize me and interacts with me every day, but he's more like my child now.
Wolf, I am probably not the best person to offer advice on this subject as it took me over a year to come out of a depression after placing Lynn. Though I often felt alone at home while he was still living with me, it was a completely different alone when he was no longer there. The loss was profound, it echoed over and over again in the silence. I couldn’t even sleep in our bedroom, and still don’t to this day.
I went to see Lynn, I came home and locked myself in my 'new room'. I rarely came out, not even to eat. It took me a long time to realize that though Lynn was still living, what I was experiencing was grief, and I was grieving as a widow. Our life was over. Now we didn't even live together. It was one giant leap towards that final goodbye.
If it brings you any comfort, visiting Lynn is now the highlight of my day. It doesn’t hurt nearly as bad as it once did. I found, in trying to bring him comfort and happiness, it also brought me much needed peace. I live to see him smile. That works for me, it brings me joy. We each need to find our way, and do what is best for us as individuals. There is no right or wrong, we just carve a new path for ourselves.
Hoping your path leads you to smoother ground….. ((hugs)))
I could never have removed my wedding band while my husband was still alive. I realize that was my personal choice and that I have no right to judge others.
Wolf, look around you, there may be someone there that needs your smile, your word of encouragement or just to observe the love and devotion you have for Diane. Your visits are not in vain.
Wolf, something you said made me think of the way I feel at times. I am frightened by it and feel the need to run. I am better when I walk and try to get out every morning. I know that our situations are different but you still must be grieving. Finding the smallest thing to be happy about seems to help to lift our spirits.
Bama*, I haven't been on the website for a couple of weeks. Did I miss your husband's passing or have you had a star all along? Sorry for the stupid question.
I have never worn a wedding ring or any other ring. I told everyone back in 1970 that if I am to be made to wear one it will be through my nose. I am quite capable of integrity without symbols.
Not a popular viewpoint but to me it's essential that I live the thing not show the thing. Just me. Any God would already know what I'm thinking and I already know what I'm thinking, so symbols are for other people.
Viewpoints may vary depending on your own philosophies and that's good too. I respect that others think differently and can't recall meeting anyone else happily married but not wearing a band on their finger. I don't try - I just naturally never fit into a category. Misfit really.
Bama. You might want to follow March madness more closely this year. The basketball this year has been terrific.
DH requested a wedding ring to ward off the many predatory women we met in travelling. After one actually put her hand on his butt he said, "That does it!"
Bill never wore a wedding ring either Wolf and we were married 47 years. I did make Joe wear one because he's such a hunk. I don't want any predatory women touching his butt PrisR.
The first week DH was in the ALF he took off his ring and told his aide that it didn't belong to him, because he wasn't married. I soon discovered that it confused him to see my ring and he'd keep asking if I'd gotten married. I finally just took it off so as to not confuse him and most of the time I wear a nice cocktail ring on that finger.
It is funny how we are all so different. I don't think I will ever take off my wedding ring. Gord wore his by choice and although for safety reasons, he had to take it off for work, he put it on the minute he got home Friday night. Sometime during his time at the rehab hospital or coming home from it, he had lost so much weight, it fell off his hand. I would give anything to have it back. It was a gift for our 25th anniversary. I had it engraved, " Grow old along with me." For our 26th anniversary, I gave him a gold dog tag on which was engraved, " the best is yet to be." I wear that all the time now and would love to add the ring to it. It was never found or at least never returned. Our son says that maybe I will find it when I start cleaning out Gord's things.
And we are a bit different also. When we married we got matching gold bands engraved with the date and the word "forever". For our 25th anniversary I asked for and was given a sterling silver band as I had quit wearing gold. I have always considered my band more as jewelry than a symbol of our union. Sometimes I wore it, sometimes I did not. DH didn't mind whether I did or did not wear it but he was so proud to remind me that he always wore his. After placement, he began to lose so much weight his gold band was very loose and he was afraid of losing it. He asked me to buy him a sterling one like mine. When I did so, I also took mine in and had both engraved as the gold ones had been. He still wears his to this day. Obviously the rings hold much more sentimental value to him than they do me.
Due to my knuckles enlarging I took my wedding ring off, put on my dresser until I could have it enlarged along with another ring. When I went to take it for enlargement, it was missing. The other ring was there, but, not my wedding ring. Evidently, my husband done something with it...he was always moving things. I have searched everywhere, however, it seems to be gone. I did have his wedding ring sized for a thumb ring, still wish I could find my ring.
After my LO was in ALF for about six months the staff gave me her rings,seems she was trying to give them to everyone there,luckily noone excepted or they would have been gone forever,just another sad reminder when I see them sitting in jewelry box
I am stunned by how sad this day is for me (53rd anniversary). May 5th it will be 2 years since Bill left me. The first anniversary was sad but not over whelming. I think I was still in the healing process. The bad stuff was still in the forefront and I was glad the struggle was over. Today all I can think of is an anniversary spent in Paris and Bill surprising me with roses. No matter where in the world we were he always brought me flowers.
You do have all those good memories, bluedaze*. I do hope the sadness will go away and you can concentrate on the good. Remembering you today with love and hugs.
((Nora)) You have been in my thoughts so often these past couple of days.......I am glad the happier moments are coming back to you. It will hurt as you recall all you have lost... but I can't help but think it will also be very healing for you. I hope the good memories will take precedence in your mind and bring you comfort ((hugs and love))
I have to ask all the folks here with "stars",its been almost two months an the guilt an grief is as bad today as it was the day I held her hand an said goodbye,shes the last thing I think about at night an the first thing I think about when I wake in the morning,I don't see this getting any better,too many memories.....
Ol don*, I am four years into widowhood and I will tell you that it will get better. Please do yourself a favor and get rid of the guilt....you did not cause the disease and you couldn't fix it.
The grief is a process...for some, like me, I had done my grieving early on in the process and his passing was a blessing for him, me and our family. I celebrated his release from the hospital bed that had become his life for the last five years he lived in a near vegetative state.
You will get better advice from others....I would only tell you to be easy on yourself and find things that you like to do and surround yourself with people who make you smile.
You did a wonderful job of caregiving your beloved wife now do your wife a favor and take wonderful care of you.
ol don*, I've been a widow for three years now, and like Sandi* said, it will get better, and for you to get rid of the guilt. No caregiver should ever feel guilty - we didn't cause the stupid disease and we all did all that was humanly possible to keep our loved ones as comfortable as possible until the good Lord decided to take them to a better place.
I also did most of my grieving early on. I almost lost him twice during our nearly 39 years together, once to an accident and another time to a stroke. I grieved each time for him and the life we had and each time was given a reprieve. By the time he was diagnosed in 2003, I knew the end was coming and vowed to make our remaining years the best I possibly could. It was a blessing for all of us when he did pass as he was whole again and I knew I would see him again.
You did the best you could possibly do for your loved one and now it's time to do the best you can do for yourself.
I would agree with both Sandi* and redbud*. I have been a widow for 2+ years and I also did my grieveing "before" and it was a blessing that he passed without having to be confined to his bed. He would not have wanted that and would not have wanted that for him. He was always a vibrant active man who worked hard and had high ideals. No guilt here - either. We had over 50 years together from out teens. But you will have to "work at it" ol don. Good Luck..
Don*, I'm sorry you are in the midst of the worst of the pain of having lost your beautiful wife. The first few months are most difficult to live through- I read somewhere that the 3rd month is the hardest, and it was for me - but it does start to ease off. What helped me was the passage of time and letting myself go into pain and not fighting it. It's like any kind of physical pain in that if I steel myself against it, it hurts more. By letting myself feel the pain of losing Eric, I got through it. It's still there, but more like a dull ache, or void. And life is sweet again. It will be for you again, I know. Hugs.
Don* I lost my wife just over 6 months ago and while we done a lot of grieving together prior it did not prepare me for the great loss I felt when I would wake up in our bed and not feel her beside me. She had always been there for the last 50+ years and not having her there was probably the hardest part of the separation. During the day when I was alone and the walls started to close in I would just grab the dog get in the car and drive. Where I went did not matter because over the years there was not many places locally that we had not been together so wherever I went we had already been and that really did not help much but at least I was trying to cope. My salvation and peace came when I started going to church again and prayed for God to grant me His peace. Through those simple prayers I found the most peace that I had known since she was diagnosed. I had known right from the start that there was no cure and It was only a matter of time. While she was alive she was the only thing that mattered and no one else or anything else was more important than her and her care. I had virtually no outside help and no respite in over the years that I cared for her but God carried me through those years and I found peace through Him. I don't know if this will help you but just know that you will have days of peace and even joy if you just let the inside grief out and accept the fact that you did the best you could and nothing short of a miracle from God would have changed the outcome. May God grant you His peace and strength. In Jesus name. Bruce D *
FayeBay* your words were beautiful and moved me. I am one who always tells others we shouldn't feel guilty, yet harbor my own feelings of guilt. I don't let them consume me, I don’t dwell on it, but I am only human, and I made mistakes. I think it is much healthier to admit our flaws and deal with them so we can move on in peace.
It sounds as if this is what you are doing and have done. I am delighted to hear you will no longer be beating yourself up! ((hugs)) I have seen you write on other posts how you wish you could have been kinder and more loving. You see it in others, but not yourself.. IMHO. You are the very essence of a loving caregiver, who did the best she could in an impossible situation.
“So the next time you feel guilty remember that it comes from love and is better than not caring at all.”
Thanks to everyone for all the comments,when we moved back to Mich from Fla we built a new home an shortly after moving in wife was diagnosed with Alzheimers,so she really never got to enjoy it,I think the best thing would be for me to sell home an start over somewhere else but with the economy that isn't going to happen so every where I look in the house,in the yard at all the flowers that she loved I think of the last seven years while I was trying to take care of her an she was battleing Alzheimers I was enjoying new home, the yard,flowers as best I could under the circumstances,I know everyone is differant an we all grieve in our own ways,her favorite saying was we're making memories for anything we happened to be doing,now she's gone an I'm left with all the memories....and heartaches,perhaps with summer coming on I'll be busy enough to take my mind off all of the things that have happened in the last couple of months,thanks again for all the support from my "cyber family" God Bless you all
How odd. I decided to post to see how everybody else who lost a spouse recently was managing and I saw ol don's* post. There were a lot of us within a few months. Gord has been gone 5 months. I feel as if I am moving through quicksand. I have no drive to do anything. Each day, I live through that particular day 5 months ago. I relive in vivid detail all the times that I was angry and impatient. I must say his name in my head a hundred times a day. I go for a walk every morning by 7:30 and then have breakfast at a coffee shop. A lot of that walk is trying to work out my feelings. I think there must have been times when I was good and kind. They remain elusive.
Anyway, tomorrow I go for training to do volunteer work at our largest cancer hospital. Perhaps that will free me from the quicksand.
It has been over 9 months since Dave died. I thank God every day that I have a job I love to go to Monday through Friday! By the time I get up and dressed and get to work, work all day, then run errands on my way home, I don't have much time to deal with my losses. Sometimes someone can say something that will make me remember and I'll tear up or cry a little, but I put my big girl pants on and brush away the tears and concentrate on my work. I still can't get past the way he was the last few weeks of his life - to remember all the fun we had instead. We had a great life before AD, and I'll do him a great disservice if I can't remember those 46 great years instead of the last 4. But it is hard. It is lonely. Being alone in the house, able to do anything I want, any time I want, cook what I want, or go out to eat, watch what I want on TV, or read, or play Words With Friends, or go shopping or to the movies - none of it is as pleasurable without him here to share it with me. I am better off than a lot of people, and I know it, and I'm not saying these things for sympathy, but to let you all know that it is going to take us longer than a year to recover and not have AD at the forefront of our memories and thoughts. Some here lost their spice over 4 years ago, and they are still here. Kadee, has said she is breaking off from AD in order to try to recover herself. I hope she's successful and comes back and tells us how she did it! Others have remarried and are happy. Others have found happiness and still others are working on it like us... We'll make it - I know we will. We just don't know when. I'm hanging in there, and hopefully you all are hanging with me! <grin>
jang*, it is too soon for me to return to caregiver status, even on a volunteer basis. I wish you well and hope you find your place to pull out of the quicksand!
jang, you are being too hard on yourself. Train yourself to think of the "good times". There are many and that will make you smile. Dwelling on negative things only hurts you and keeps you from going forward. My dh has been gone for over 2 years. We "lived in each other's pockets" since we were teenagers. Worked together in our own small businesses. I miss his company and his devotion to me. Today, I stopped to take a picture of his gravestone for my son who lives out of town and wanted a picture so his wife could do the flower arrangement for Memorial Day. I never thought he would step up to the plate with this even though I told my 3 kids I was going to take turns with them doing the flower arrangements. That made me feel happy. Also, today while in the pharmacy I seen Russell Stover Candy - buy one - get one free. I haven't bought a box of candy since he passed - but he would NOT have let that go by without buying at least 2 boxes because candy was his passion. So, I bought a box and now I have 2 boxes - made me smile. I see a pretty vegetable garden and remember how much he enjoyed raising vegetables - particulary watermelon and butternut squash. Makes me smile.
Think of things that would have made him happy. I know having AD would not have made them happy but we have to play the hand of cards we are dealt . Most of us wish things could have gone on the way we planned our life would be - growing old together until we both passed. Things are not easy and days and nights are lonely. No doubt about it but we have been granted life today and it is a present. Things will be better - hang in there..
I think now would be a good time to hear some reports from other widows and widowers about things their dw or dh enjoyed. Concentrate on that and smile for them. Best thing you can do for them and yourself. Did your spouse enjoy fishing? golfing? cooking? baking? flowers?, etc. Let's here some happy thoughts today.