I am deeply sorry for your loss and what you are going through. I can only offer my sympathy and comfort, although I know that is not enough.
My thanks to all of you who have lost spouses and are giving support and advice to those who are following in your footsteps. It is not an easy path, and your guidance is appreciated and needed.
It is Sunday , I went to church then to lunch with a friend but now am home for the rest of the day and dreading the night all by myself. I have insomnia and so the hours stretch out so terribly long.
Now that I don't go to the NH since my dh death, I am having to find activities to fill the lonely hours. I honestly wonder if I can live by myself in this house for the rest of my life. I don't want to go into assisted living and don't want to give my house u p. I am going to visit my son in Texas for a week which will help, have joined a s upport group and plan to get started on Christmsas projects.
I can get by the days but the nights are so lonely!! Do you have any suggestions for me?
Joyful* - I'm pretty sure that we live near one another, that our spouses died within five days of each other and that they are both buried at Jefferson Barracks. Would you be interested in lunch or coffee somewhere in South County some afternoon? I also have a surplus of time now.
i am not doing so good. i can hide it sometimes,we have to or nobody would ever want to be around us. i just do not want to go anywhere and i have to make myself when i have no choice. i just stay so tired. if i can sleep,i can dream about him and i don't want to get up,i just want to go to sleep so i can dream that he is still a part of me. i know people are going to probably tell me that is not a good thing. when my grandchildren are with me i do okay,they are such a joy. they are a part of me and him that will go on. maybe i need counceling. i just don't want to go. i had a recent death in the family,a close cousin who died of a heart attack at age 44. that has not helped with my grief either. i just can't stand sad news,of course nobody wants to hear that type of news. i am just truging along.
Hi all! Thanks so much for all your heartfelt (really!) words!! Yes, it is so different! I went out today and the headstone is now on the grave. I am still dealing with some last bills and trying to get my money back from the assisted living that in the contract states that I would for the days he was not there. I am having to get a lawyer, and that is so ashamed and unneccessary in a time like this!! Makes you wonder how really caring they are, doesn't it? I have been job hunting till I am exhausted, there is just nothing out there right now. I am not all that anxious but then in another way , I know I have to make a new normal , if there is such a thing. maybe just should say routine instead! At least now I don't have to remind myself to breathe, and I am not feeling as nauseous these days. Hugs to you all!!
decblu I had the same problem when my husband had to leave an ALF because of a bad placement. I got the ombudsperson to help. Every facility has the phone number listed so you could try that. You don't need that heartache.
I wish I had an easy answer for all of you who are having grief issues. All I have ever heard is that grieving is a process that one must get through and for some of us it takes a bit longer.
I was one of the fortunate ones who had no difficulties after my husband died. Our journey was long and hard and the grieving must have been done many years ago. All I felt was relief when he was gone. Of course, he had been in a fetal position and totally uncommunicative for about five years when he died, so there was no connection with him so his passing was not as traumatic as if I had been able to see his eyes light up or a smile curve his lips.
Getting involved in something you like with people who make you smile is something I managed to do even before he died. I made new friends at a water aerobics class and at the local Curves.....it was good for me both physically and mentally. These ladies are now among my dearest friends and they all still have their husbands and a normal life and I know that they look to me as an example of how to get through the loss of life as they know it. Some times I think that is what my "calling" is.....to let people know that there is life "after".....not the life we would have chosen, but a life nonetheless.
After years of caregiving I think it is acceptable to become a wee bit selfish and take whatever time we need to get our act together....be a wee bit selfish and do some things we didn't have time for....be a wee bit selfish and make a wonderful life for ourselves....because that is what our loved one would want us to do.
Sandi*.....All of us, caregivers, need to read your post and Joan's blog today. It inspires me to try a little harder to make some time for "Me". I have enjoyed you on Facebook and know that you are taking the time to smell the roses.
Oh Bama, life is so short....I watched my 50 year old husband go down the "rabbit hole" of AD and then die at 61....I vowed many years ago to live my life to the fullest...no matter if I have 30 years left or 30 days.
I am enjoying myself....I have never lived on my own and what a good time I am having just doing what I want to do when I want to do it. I fill my hours with reading books, watching TV, playing on the computer.....I spend a lot of time with my kids and grandkids, enjoy my looney friends and climb into bed every night thanking the good Lord for all my blessings.
Sandi* please stick around. Those of us on the other side of this journey need to hear from you once in a while. We need to know there is life on the other side.
((Sandi)) I too am grateful you are still posting with us, you have helped me more than mere words can express.
((decblu)) I too am sorry to hear of your loss. I can't imagine how painful this time must be for you. I am glad you are reaching out and I hope you find the peace you need.
Hello to those of you who were posting when I was active. I thought I might make contact at the anniversary of Hank's death, but the time passed and I didn't. It was so much fun to meet up with Sunshyne and Bluedaze at the SD Zoo yesterday and be reminded of the deep friendships I formed while dealing with AD. I didn't know if it would ever be possible to be content, let alone happy after being widowed. I find now for the most part I am content and spend a great deal of time actually being happy! I continue to be thankful to live in my motorhome and not have so much STUFF! Until August, 2010 I will be hanging around the San Diego area so I can look after my little grandson two days a week when both parents are working. I committed to doing this until Mychael Liam is three and then I will go on with my goal of getting to all 48 states eventually. Hank and I had several trips we talked about and never did. One was to Antarctica, and I have booked going there in December of 2010. I've never cruised and roomed with unknown women, so this will be a first. I think of many of you often and know the committment caring for a spouse takes. I want to assure you there is 'life after death' and much to enjoy.
So good of you post and to know you are "carrying on" with your life AFTER. Gives us all much hope. Good to hear you met up with Sunshyne - hope she is doing well. Keep in touch.
Fran, I would loved to have been there with Bluedaze, Sunshyne and you at the zoo. All of you have been such a help to me since I first came here. It's good to know how well you've adjusted. Thank you for coming back to give encouragement to the rest of us still dealing with this.
Frand*, it is so good to hear from you and know that you've picked up the pieces of your life. I think there's a real need here for those still dealing with AD to know that there can be contentment and happiness after.
Your Antarctica cruise will be quite the adventure, and your goal of visiting all the states gives you something to look forward to for a long time. That's wonderful. I'm very happy for you.
I'm very relieved that you were there to supervise Sunshyne and Bluedaze, as who knows what kind of trouble the two of them would have gotten in otherwise. (-:
It's been a couple of days since Joyful* was supposed to have surgery...any word yet? I've not had a chance to look for her on all the threads. Hoping all went well and that you are doing great. Let us know.
didn`t think I would be posting on the widow and widower site yet but here I am. My daughter from Az. left this morning and I am already panicking about being totally alone at night, I know I was used to being alone before Bob passed but it`s different now, I can no longer go to see his beautiful smile and hear his voice, I try to tell myself I am done with this Alz. journey , how long does it take to sink in the head before I can smile again? I so admire those of you who have given me a look on the other side of Ad but right now I don`t like this side, will the hurt ever stop. Gail
Gail, I think I'm probably starting to sound like a broken record, but healing takes time, time, more time. Your loss is still very fresh. You need to give yourself permission to grieve, to be sad, to just be. Don't set your expectations too high just yet. You will get through a day, then another day and another, and eventually, things start to seem better. Please be patient with yourself. (((hugs)))
Bill has been gone 9 months and it is hard to believe he's been gone that long; at times it seems like just yesterday. I have grieved for him and missed him more that I ever imagined. He suffered with AD over 12 years and thank God I was able to care for him at home. My big thing is that I still can't picture him as he was before. Whenever I think of him, it is the way he was the last couple of years. He started having trouble remembering who I was in 2005, so I cared for him four years when he didn't know me as his wife. I am waiting for the day when I will remember him as he was before AD. Last night was the first time I dreamed of him before AD took over. I didn't want to open my eyes when I woke up because he would again be gone. Nine months, am I supposed to be over it? Most of the time I am doing fine but then out of the blue it all comes back.
joyce-even though it was only a dream I am happy that you can remember your husband before AD took over. I can scarcely remember my Bill as he was before it has been so long.
My husband has been gone 8 months. He was only diagnosed 4 years before he died of early onset AD and was really bad for about a year before he died...at least it was that long when I was not able to leave him alone and his skills started such a rapid decline. But I, too, keep remembering the poor soul who couldn't find the bathroom, didn't know how to dress himself, depended on me for everything, etc. I want to remember the vibrant man who could build or fix anything, who made everything I asked for possible, and with whom I shared a wonderful life. I wonder if I am supposed to be "better" by now and when I will remember the man I married.
bluedaze and FLgirl, that was the first dream I've had where he was not sick. I still can't picture him as he was before AD. People tell me I will forget the bad times and remember him as he was, but I haven't. We would have been married 47 years this past July, he died in Feb., the last 12 he was sick. I watched as he slowly disappeared. The last five years he didn't know me most of the time and not at all the last two. Again people say "he knows you are his caregiver and he trusts you". That's great, but I wanted him to know me as his wife not his caregiver.
I, too, wonder if I am supposed to be better by now and when I will remember Bill as he was. Maybe never. I remember things we did before he became sick, but that person isn't the person I cared for. The man I watched over, fed, changed, bathed, shaved, brushed his teeth, changed diapers and picked up to transfer him from bed to chair and back again is not the man I want to remember. I want to remember the man I married.
By reading your replies, I know I'm not alone and others know what I'm feeling. Thank you.
One week from tomorrow will be the 9 month anniversary of Paul's passing. I have only recently begun to have some fleeting memories of Paul before he got so ill. Mostly it is in passing by a picture, or someone bringing up a memory "they" had of him. These are not dreams, but conscious memories. Still, most of my thoughts of him are from the last couple of years, and they do leave me feeling pretty sad. I see him struggle, and looking lost. Not the kind of memories I want. But we will survive............the good memories will prevail.
The greatest help to me is when someone else brings up a fond memory that is really an example of his personality when he was well. I try to see him through their eyes for a moment
New Realm you are so right about someone else bringing up a good memory of past actions. When a neighbor helps me with a problem they will mention that my husband was always there to help others.
Joyce 43, my Frances has only been gone for a bit over three months now, but I'm remembering the "old healthy Frances" more and more, and the sick one less and less. I think one thing that has helped me is photos -- I still have the collages on the dining room table of a happy Frances that we displayed at her memorial service, and I still look at them frequently and am reminded of happier times. And I also took the time to go through about 5000 35 mm slides that we'd made back in the 1970's and 1980's and had some 700 "good" ones transferred onto a DVD so I can bring them up on my computer screen. I've printed out and framed my favorite one of her smiling bewitchingly, and I give that one a wink and blown kiss dozens of times a day -- just about any time I start or finish an activity. I hope your good memories will start to replace the bad ones soon.
How long was your Frances sick? I remember things Bill and I did but it's hard to picture him as he was before AD. When I picture him, it is as he was at the end. Maybe because he suffered for 12 years almost 1/4 of our married life together. I have his pictures around the house just as I did before he died. He is the first thing I see when I turn on my computer and I say hi every time. I still tell him good night before going to sleep. I miss him like heck, just as you must miss Frances, but I would never never want him to have to go through what he went through again. I know he is now in a wonderful place and is smiling again. I know he is happy now and I am going on with life. Not as happy as he is, but I'm getting there.
Joyce, we received an "official" diagnosis of probable AD in 2002, although Frances had been under the care of a neurologist and taking Aricept since 2001 (and exhibiting noticeable memory problems for two or three years before that even). But the progress of her disease was slow and we were able to continue living a more or less normal life until just the past couple of years. So we had more than fifty years of really good times to remember. And now, instead of dwelling on "my loss", I'm also moving on -- "keeping company" with a dear widowed lady friend that we've known for 55+ years, and looking forward to the possibility of maybe sharing my remaining golden years with her after some "decent" interval of time has passed.
I had a bad night and woke up did some chores and came on here, the posts from the last three days just poped out at me, I have pictures of Bob that I talk to, yell at telling him he had no right to leave me and I always say goodnight, It hasn`t even been 2 months since he passed and I am remembering many of the good times when he was my friend,lover, a wonderful father, but the bad sickness time keeps pushing that aside, the pain of losing him is unbearable at times and I wonder how can I live without him, he did everything for me, now I have to grow up/ how in heavens name do I do that? yes I kiss his picture everyday, I just want Christmas to be over and as for the new year, we always celebrated that, he asked me to marry him then, Lord just get me through this time, I do refuse to let the sickness time to take over my memories of the wonderful times it will take alot of work but I have to do it for myself,him and the children,we talk alot about him and sometimes we can even laugh but then here come the bad memories, so all and all I am not doing to well with the holidays and after that I have a anniversay on Feb. 4th, I want my lover back, I want the hand holding, kisses,backrubs and the love making, I`m sure we must all miss that part of our lives, thanks for being there for me, I can trulley know what you are all going through, God bless . Gail
marygail, it's been 10 months the 21st of this month that Bill's been gone. They say time makes it easier, maybe it does, but I still miss him and at times I just want to sit and cry. When I feel this way, I remember how scared he was at the end always that blank look and not knowing me, then I can feel good for him knowing he is ok. The holidays haven't been too bad but when July 7th rolled around, our 47th anniversary, I couldn't keep how I was feeling from the kids. To me that has been the hardest day I've had to go through.
Gourdchipper, It sounds like the timing was about the same for Frances and Bill. At first things went slowly and then the last two years seem to go so quickly down. We were able to make a trip to Hawaii in '03 and then to San Francisco in '05. I wish we could have gone earlier so he would have understood and enjoyed both these trips. In '05 he was confused on who I was and would ask if I thought his wife would mind that we were sharing a room. As long as I was able to get Bill into and out of the car, we went everywhere together. It got harder to do this but up until Sept of last year we were able to do it. We spent the summer of 08 at our home in northern Mich., we came home the 1st of Nov. and he wasn't able to get out of the house again. We have to go on no matter how hard it is, but there are others out there that are depending on us.
When we lost a son at age 7, we explained his death to our 8 year old by saying that he had been sick for a long time and the doctors couldn't make him well so God took him to Heaven when he would be well. Well, the doctors could not make Bill better, so God took him to Heaven so he could be well.
Little things sneak up on you. Like today when I was scrounging through some of Frances's drawers, looking for old eyeglasses to donate to the Lions Club, and came across her favorite pink digital watch -- still keeping perfect time. In the olden days I guess they used to still the clock pendulum when someone died -- should we remove the battery now? I had to go in the living room and sit down, facing her picture, and hold the watch to my heart -- remembering how much it had meant to her as a birthday gift from our son a couple of years ago -- after she'd forgotten how to tell time using a regular watch. With the new digital one, she'd proudly check the time on her watch and ask "What time do you have?" This from someone who'd been valedictorian of her high school graduating class. As I sat there, I'll admit to having shed a few tears (I'm doing it again now) thinking about how unfair it was, the way the disease had increasingly compromised her over time. I had commented on that earlier today in the introduction to our annual Christmas letter (the printer is spitting them out as I type), when I said:
"What with losing my sweetheart and life partner in August, I know I’m going to have a hard time putting a happy face on 2009, but let’s give it a whirl. Looked at in one way, we all really could be happy for Frances -- happy that she’s now free of the mental confusion and the physical limitations that had been closing in on her in recent years. And happy too, I guess, that she was seemingly never much aware of or troubled by her deficits... she never complained. She was a trooper!"
Joyce, Marygail, and gourdy....I can understand what you are feeling. I often feel that same exact way, except I did not earn the * yet. I spent Thanksgiving alone, without my dw, and Christmas is also going to be very lonely. Audrey is still alive, but no longer here for me. My hope and prayer for you all is that it will become easier in time, and the pain will slowly diminish.
I put up the Christmas tree tonight and even got the lights on it. Maybe tomorrow or some tomorrow after that I will add the ornaments. I hope it isn't the same tomorrow I used to tell Bill about. phranque, it is getting easier and the pain is going away, but it is going to be a lonely and different Christmas this year. You just put your arms around Audrey and enjoy holding her close.
Am I the only one who just doesn`t get Christmas this year, I can`t seem to get in the holiday spirit, I understand it is an important day( the birth of Christ) but all my feelings are gone, I am having all family over on Christmas eve, hope I can get through without making everyone misserable, maybe I should drink alot of wine maybe the hurt will go away, then I have new years eve, Bob asked me to marry him on that day, always meant alot to us, then comes Feb 4th, our anniversary 43 yrs, will I ever have good feelings again? No one seems to understand why I feel this way, I don`t understand so how can I expect them to.I go on facebook all the time,check out Joans place and comment once in awhile but it is hard to put my feeling out there cause so many of you are hurting and still going through the AD , I at times want what alot of our cyber friends still have ,there loved one , I realize it is a hard road to travel but sometimes I wish I was still on it. thanks for being there for me when I need you all. Gail
marygail sometimes when I look at family pictures I wish I could have appreciated more at that time how wonderful life was. We didn't know that it was the best of all times. We didn't know that we would lose so much. Anniversaries of events hurt. Wish we didn't dwell on what was and could move on, but it doesn't work that way. Any way-we are here for each other.
Marygail, you and I should spend time together on February 4th. My anniversary too, the 49th. My husband hasn't realized it is a special day for a couple of years now, so it is bittersweet to me.
I truly do understand why you feel the way you do. It is very likely that it will be that way for me too. Remember, you are allowed to morn.
Gail, absolutely you are allowed time to mourn. How can you "get Christmas", even with your family there, when the person who was most important to you for 43 years won't be there? I wish I knew the right thing to say to help you, but I don't. Just remember that we are all here for you.
Gail,I know it's hard to believe right now, but eventually you will hurt less. The "first" everything is very difficult because all those firsts - first Christmas, New Year's Eve, anniversary, birthday - without your beloved spouse is a very painful reminder that you are alone, no longer part of a couple, celebrating with that special person in your life. It's early yet, for you. Give yourself permission to be sad. Sending a gentle (( hug)).
My prayer for all of you who have earned your * is for 2010 to bring you some form of peace. Blessings to you all for the caregiving role you have played in your spice' lives and for being there for the rest of us when we needed us. Please stay with us. We love you all.
One of my favorite ways to cope is continuing to utilize the bedroom I put in place for myself. I have been "living in it" for over 6 months and am continuing even more so. I have it decorated to suit me, a Queen Size adjustable bed, TV, Wireless laptop, a recliner, bookshelves, books I am currently reading, a flashlight in the lamp table in case the electric goes out, my passwords, telephone and telephone book. A nice view from the window and adjoining bathroom and walk-in closet. It is cozy and comfortable while the rest of the house is open and too much "open spaces" for just me now. While Paul was still alive, even though he could do little, he was a "presence". Now it is just me and my cat Topsy. We talk to each other and she gives me "kitty kisses".
If you already don't have a similar santuary you might think about the possibility of doing something similar yourself. My house is 2200" and pretty roomy for just me, but I don't want to move.
We have survived the disease and can continue "putting one step in front of the other" and recarving out a new life for ourselves. Our spouses may be gone, but the memories, both good and bad are still there. Accept the face that "This is Life and things happen" but we can be strong enough to survive. REPEAT: I CAN AND WILL DO THIS.