marty* after a major life event you can expect to be distracted as your mind spins into a blur. When my husband died the funeral director told me that I would forget much of what he told me. He was right. There is only so much the mind can process. I do a lot of grief counseling and always mention the forgetting. The folks I try to help usually begin to cry at that point because the think they are losing it. Please be careful-all of you.
There's also a physical toll. I was past exhaustion, and my reflexes, stamina and immune system were affected, making me more prone to accidents and infections.
I agree strongly with bluedaze*, Vickie* and Mary75*. Although my loss is not recent, within three to five months I was ill with an inflammation thing. Exactly what it was not really resolved. This December has hit me hard as well. Besides the holiday's- my birthday, my husband's birthday, the six month anniversary of his death and my best friend's death. So, back to the doc. For some reason I had it in my head that once the bazillion medical appointments, tests, etc for my husband was in the past, it would be some kind of clear sailing. Well, no.
Marty it is true, as others have said. Unfortunately I can attest to that and further more if there's more than one life altering event there will be a multiplying factor to this result. In the initial months after DH passed, I knew to do all I could to reduce the stress, rest when needed, let my body guide me. There have been improvements-- -BP is lower; weight has dropped some; IBS has improved; and I'm sleeping better. However, the loss of the house, downsizing into a one bedroom apartment, placing my 2 cats, also happened. 2013 began with 3 trips to the ER during the first 5 months; recognizing major progression of my handicap (having ignored it during Caregiving\);and breaking things. Broke a bowl; the glass front of the oven door; half un-hung the entry door; put a hole I n the bathroom door. Found out one of the injuries cannot be fixed. I slowed down more. I have those things dealt with as much as I can nw. 2014 is going to be better. I'm taking my time, being more careful, and planning better. We do eventually heal.
OH Marty*, Give yourself time. I lost my husband 4 months ago and in some ways I am functioning ok and in other ways I am so distracted that I get nothing done. I don't get up early like I used to do, I suppose it is the build up of fatigue from the last 8 years of this non stop caregiving. I suppose I really do need the sleep..you most likely do too. I seem to have legal papers stacked all over the dining room table and it drives me nuts but I need to have it where I can get to it without having to dig for something all the time. I need to do so much around the house and just thinking about having to start to get thing gathered up for the tax season just about gives me a rash! We are going through a really rough patch right now and we have to give ourselves permission to take it one day at a time and to he** with what anyone else thinks we should be doing. We gi through this at our own pace. One thing that may help is seeking berievement counseling. I have and it helps just to have someone who can listen to where I have been and where I am trying to go. This kind of support is valuable. Not only that, we have to take care of our own physical health. I know that my BP is normal..it was, for me, higher than I would like and now it is fine. I am on meds without which I know I would be a wreck. I saw the neurologist about migraines and was put on sertraline and it has made a huge difference in the headaches as well as helping me just cope. I see my GP on a regular basis and she keeps tabs on how I am doing. I learned when my parents died that this traumatic event can lead to accidents and did I have one for which I am now in PT. Not a car, it is periformis syndrome..an irritated muscle that aligns with the sciatic nerve and let me tell you.....but things are getting better. The sad awful truth is it just takes time and we deserve to have as much time as it takes for us to come though all of this but if you find you need help by all means get it. ' Take care and we are all here to support one another. No one understands this loss like we on this thread do. Blessings and Peace to you and all of us in this new year..
About three months after my husband's death I was doing quite well, packing things up. I was sitting in a chair and shredding some of the paperwork and looked up at a nearby clock. BAM! An instant migraine like one I had never had before or at least could not remember having. My PCP was concerned and labs confirmed I had an elevated sed rate for which I was rx'ed a couple of rounds of prednisone.
Just a reminder to me of the toll the previous years had taken.
I'm not quite 2 mos out and am getting an grief anger response for one DD who was incredibly supportive during her mothers illness that is totally out of proportion . She's got a ton of guilt as the result of departing on a business trip to Kenya knowing full well her mother most likely would not survive the duration of the trip, which she didn't. She returned home after a funeral and memorial service were held in Fl and NY. I have not seen her since DWs passing DD is furious that I had DW cremated rather than rejoining our former temple, and buying a plot for $20K + transport or remains from FL to NY . DW had repeatedly stated she couldn't care less burial or cremation and states so in her will. The cost of returning home was not my motivation it was a little more complex. I wouldn't bury DW next to a stranger down here in FL. DW also shadowed me incessantly becoming very frightened and agitated when she couldn't see me or comprehend where I was. I didn't want her frightened throughout eternity - her ashes are with me. I am now accused of being a horrible grandfather due to the fact I was never able to do all the normal activities with my grand children attend sporting events, awards and I'm responsible that we have a non existent. My grandchildren once loving and in non stop txt communications have withdrawn. I have written to her twice explaining my choices and the fact that there are no do overs in life. I miss her and love her and my door is always open Anyone else go thru anything like this
marty I would like to think that your daughter's guilt is the cause of her actions. Perhaps she, too, could use some grief counseling if she would accept it.
Guess who's grief counselor is stopping by for drinks and then taking me out to dinner tonight, ( she's driving, I'm picking up the tab. ) I don't have replacement glasses yet and can't drive at night with sunglasses
Marty--TG it wasn't my daughter who gave me grief. She was always "with me" though she lives in CA and I'm in Michigan. It was my in-laws. DH needed to have contact with them, or I would have cut them off early on. All through my Caregiving years there was criticism; blame; Ostracism; and interference. I all but broke my back working around them. At the last, while in the hospital immediately after the incident that put us on the last path, one of them took him cigarettes--in the hospital. You wouldn't believe the reaming I got about the NH he was transferred to. Best place I could find. Only by luck they had an opening occur hours before he was slated to go to a facility too far for me to get to. I never told them that the Aortic Stenosis was treatable with surgery. His Dementia precluded that, and I wasn't fighting that war. There were 3 efforts to persuade me to hold a "regular" funeral with visitations, the Rosary, and all the trimmings---not the cremation, memorial service and luncheon we'd planned. Except for one 5 minute call a month later, I've never heard from any of them---17 months now. My daughter and I did things the way we had decided with his knowledge beforehand.
Just as you are and will continue to heal, so will your daughter and grandkids. Keep the door open. Throw an e-mail or call their way once in a while. And the biggy----- give everyone time.
I have several family members that I will not contact now. The door is still open, they know where I am. Just don't want the problems and drama that comes with them.
I have found that in the past several days, I drift off. Just for a moment or so. I think after around the clock caregiving that my brain just needs a rest. At least I hope that is all it is.
My DH passed 14 months ago and I still fell lost. Holidays were harder this year than last. I am so confused as to who I am and what I want to do with the rest of my life. I am 61 and thought I was very independent and would have no problem moving on but I was wrong. I dont know how to begin to find grief counseling. Sometimes I think it will never end I should be better by now. Did you that have sought counseling go through your hospice? I have tried to change my surroundings and my life. Tried getting involved just cant seem to be able to.
Granny D*, a year before DH died, I asked a social worker friend for the name of a good stress counsellor, and she gave me the name of one she had gone to. I still see the counsellor once a month. As many of us have found, we don't like to overburden our friends and family, who have their own life problems to deal with. An objective professional can offer safety and help to us when we need it. It is money well spent will give you back your life.
I found a GriefShare group that was very helpful. I've been a widow 15 months and have begun the 2nd firsts. It is still very hard. I've said before here that grief is the hardest thing I've ever done. It sometimes seems like a large wet blanket that I can't seem to get out from under. grannyD*, you are so young I pray you can find a new life and I'm sure eventually you will. Not saying that you will ever forget the memories you made or who you made them with you'll just make new memories. Keep coming to Joan's folks here really understand.
granny D, I got information from the funeral director. I have not looked into the grief counseling yet but know I need to. I hope this helps you. I hope and pray things get better for you and the rest of us still grieving our loved one.
I feel like I am handling the over all grief as well as can be expected. Where I am having trouble is here. I feel guilty that my journey with Alz caregiving did not last as long as most here. I know this sounds silly. But I feel so bad that my struggles are over, and others here are still having such a hard time. I am sure it is more like survivors guilt. I almost feel like I don't belong here. I know totally silly on my part.
blue*, you do belong here. No matter how long or how short our journey is, we each have experiences to share and help someone. Mine was long and I'm glad it is over, but I still feel sadness for those still going through the trials of just getting through another day. Bless you and here are some (((((HUGS)))) for you, too.
blue*, there are a lot of times that I don't feel like I belong here or azspouse or GTU Widows and Widowers or US Against Alz. When I feel like that, I just stay clear for a couple of days. I, too, felt bad that Lloyd was dead and a lot of other people were still carrying on. His problems first surfaced 2004. He had little problems until he was dxd in January 2009. He lost skills steadily and when he had his first seizure April 2011, things just kept going down. I prayed for him to die quickly and as painlessly as possible. The last 6 months of his life were really rough, but I survived. I kept him at home and he died in his own bed with my kids and some older grandkids there...with peaceful dignity (as long as we don't mention his mother). I always come back here because these are the people who got me through the Hell. Even though it is over (not really) for me, I want others to know that there is a light at the end of the tunnel. I feel the need to encourage them to press on. I survived this damn disease even though he didn't and I did the best I could for him until it was over. What more can we do?
Speaking as a spouse still on this journey, selfishly I need the wisdom, caring, suggestions and just plain support that those of you who are no longer active caregivers can only provide. I know it is and can be painful to still stay connected to those of us who have not yet lost our spouses, but we will lose our spouse one day. I can't tell each of you how much I've learned about the importance of death with dignity, true love and comfort during those final days and the strength each of you possess. I pray that when it's my turn I can be as wonderful as each of you have been. I pray you will help me during my darkest hours because only you know how it feels.
Thank you for your kind words. I know our journey on this road started way before the dx. It must have been around early 2000. So many conflicting emotions. It still does not seem real. Just need to give myself time. So glad I have you all to help me. :))
Good points, and I'm glad you all have made them. Sometimes, the aspect of relief we feel that our spouse's struggle is over can make us feel a little of that ever-present guilt that others are still in the thick of it.
But there is stuff--the final grief, suppressed memories and feelings burbling to the surface--that are every bit a part of the process. We're not in the clear; we're still dealing with plenty of stuff. So we should be weighing in with insight. And providing a window into some of the possibilities that can open up in the "after" part of the journey.
The strangest part for me, is I don't feel full of grief. But then I feel like I lost my real DH years ago. The man I lost last month was not "my" husband. Does that make any sense??? I feel like I grieved several years ago. The loss of the love and affection left me long ago. DH had no idea who I was the last few years.
I am not sure where I am on this grief journey. And it makes it hard to understand how I should feel and where I should be. I feel lost in my feeling.
Not nuts at all blue*12-16-13. You are exactly where you should be in you progress on this stage of your Caregiving. Every Dementia patient proceeds on the Dementia Road in their own way and each Caregiver travels their road accordingly. We travel in individualized lanes, but there's so much of each lane that is the same, or similar, to the lanes of others that we can understand help each other get through. Each of us process our grief individually too. But, here again, regardless of our individual methods and the length of time it takes, we can support each other because we are all going through it. For me, in looking back, I think I had an advantage in dealing with this part of my journey.,. Because of my CMT, I'd experienced loss and grief in increments all my life. Not the same kind, but still loss and grief. Then we lost my Dad when he was only 50. 14 years into our marriage DH had his Mental Breakdown and Caregiving began. All along the way from that Dx (3/1988) through his Dx of Vascular Dementia (9/2006) and through placement (1/2012), then the Dx of CHF caused by Aortic Stenosis-Critical (6/2012), then to his death (7-8-2012), I grieved the losses. So, as you said, "I don't feel full of grief", I didn't feel filled with grief when the NH called to tell me he was gone. Looking back, I think what I felt was a sense of completion. We were blessed with an easy, gentle passing.
I am sure some of those I told, "Ron's passed, and I'm okay." thought I was "nuts". But it was the truth. It is the truth. Yes, I was sad. There was a void in my life. But VaD had been making and enlarging that void for years. I still grieve for the losses, but I experience it, work through it, and keep on. IMHO the best way to honor his life and our life together, is to get on with living---and live large, for the both of us.
blue---you've only been on this part of the journey about a month. GIVE YOURSELF TIME. Time to rest. Time to recover physically...mentally...emotionally. There is no "should" in the process. You are in your grief process and are where you are now and feel as you do for this place in your process. Don't listen to others telling you "you should be farther along", or to not feel a certain way. They are not on your journey.
Carosi2*, as always, you say it so well for all of us: "Yes, I was sad. There was a void in my life. But VaD had been making and enlarging that void for years. I still grieve for the losses, but I experience it, work through it, and keep on. IOMHO the best way to honor his life and our life together, is to get on with living---and live large, for the both of us." Sending you love.
No Blue...I feel that way too. The way I'd describe it for me isn't so much grief as it is fond memories of earlier times that make me feel wistful for what was and what might have been had AD not intervened.
Blue*, you're definitely not alone. I could delete your name from your post above and put my name on the majority of it!
I'm coming up on the five year mark with the * behind my name. I never felt the overwhelming grief some feel when their spouse passed. We had nearly 39 years of a good marriage but from 1991 when he was electrocuted and nearly died, an open heart surgery, several other surgeries, a stroke and the signs of alzheimers I didn't recognize long before he was diagnosed in 2003, I grieved each time. I always felt something was wrong with me when he did pass on and I wasn't showing "the proper amount of grief and sorrow". (I was told this by one of his family.)
It really hit me when my friend's husband passed on right before Thanksgiving. Gena and her son had gone out to get a breath of air and I was sitting with him when he passed. Everything hit me at that point. I was going to go for some counseling until Gena and I talked with her priest and he put it all in perspective for both of us. Allen had Parkinson's for 20 years and Gena grieved each time there was a downward spiral of the disease. I did the same each time with Claude. We did the best we could do for them, and now it's time to do the best for us.
Blue* I'm feeling just like you. I too don't have a lot of grief anymore, more sadness and feeling lost at this time. I think we did all the grieving throughout the progress of the disease.
As mary75* wrote..the best way to honor his life and our life together, is to get on with living. Carosi2* says it all perfectly..
Tomorrow is his memorial service, I just need to get through that, then try to move on a little. Hugs
Edit to say, I have a friend on this Alz journey with her Dh say to me, she is jealous that it's over for me...wishes it was her. Not sure how I feel about that.
Blue*, It is 5 months and one day for me right now. I don't know if I have managed to keep it together because the neurologist put me on Sertraline for anxiety and migraine or what. I have had people tell me how "strong" I am or how " beautifully composed" I was at my husband's funeral, or that I seem more relaxed ( which is true now). While I miss my husband every day I keep in mind that even now he is taking care of me through his wise financial decisions that help keep the roof over my head and the ability to be comfortable, and that had he survived the cardiac arrest how much worse off he would be...And like all the others, with each change for the worse, for each ability our loved ones lost, we grieved that and knew what was coming eventually. To see them feel hopeless or useless was painful for them to feel and for us to see. I think if I had lost my husband to a car accident or plane crash ( he was a military pilot) or something for which there was no advent, I would be in the closet boohooing endlessly. But as it is, I miss him every day but I know he is at peace and I also know he is near in spirit looking after me and all I have to do it just talk to him and somehow his advice mentally comes through. I was blessed to have this remarkable man in my life for 36 years of wedded bliss and 40 years total...God gave him to me for those years and 5 months ago I had to give him back. I would just say, don't pay attention to what others THINK you should be feeling. Your feelings are yours and you have a right to them whatever they are. No one knows what we have faced over the months and years our LOs suffered as we did with them unless they have been in our situation where, unlike some other illnesses where there is hope, for ours there was none. Arms Around...
Mimi* "God gave him to me for 36 years ago and now I have to give him back". what a wonderful, loving sentiment. I will remember your words when my dh passes...it brings me comfort.
Grief is the hardest thing I've ever had to do. I've said that many times and it continues to be true. A friend's husband died one month after my dh and her grief journey is not like mine at all. He went in for surgery - they were joking and planning the rest of their day before they kissed and said see you in awhile. He died in the operating room. My dh had deteriorated for over 4 years and I always knew there was only one ending. Everyone has a different experience even in the az world. How ever you are grieving is right for you. Some days I think I'm making progress and can see some sunshine then I remember a good time we had and that I'd never have another with him and I fall apart all over. We had 60 years, 6 months what a blessing and he too was a good financial planner and I have no money worries for which I am forever thankful. But there is a big hole in my life that nothing can ever fill. I hope I add something on this forum that someone can use that is certainly my intention. I know I am thankful that I found this when I began the awful realization that dementia had moved into our home.
blue - as suggested you might need to take a break from here for a day, two or longer. In one of the Memory people rooms a woman posted how she just can not move on cause every day she reads what others are going through. She needs to break away for a while or ever. It is like someone with PTSD continually subjecting themselves to their triggers.
Or be selective about which threads you are reading - maybe just this one for a while.
As said, everyone grieves in their own way. Some get most of it out going through the disease, some just won't let themselves grieve during the process and get hit hard at the end, then there are all the others in between. I could never get pregnant. Some women will get over it easily. Me - I was in my 50s before it stopped hurting. After my husband was diagnosed when I was 54, I was grateful I never got pregnant and chance passing it on.
Julia said: Edit to say, I have a friend on this Alz journey with her Dh say to me, she is jealous that it's over for me...wishes it was her. Not sure how I feel about that.
Julia, please do not feel bad when people say that. Every time someone looses their spouse I feel similar, especially for those that had a good marriage. I think it is a sign we are tired of this disease.
Charlotte, I've had time to think about what she said , and do feel better about it. Yes it's a big relief when it's all over, I do feel for those who still have a lot to go through. I will help my friend as much as I can.
blue*, "sense of completion" really describes it well. Florence, while Lloyd was still alive I had a hard time thinking of good memories. Now that he is gone, a good memory will just break my heart all over again....but that's ok. I want to remember good things. My most recent was what an outrageous flirt he was. Oh, there was never a trust issue. I knew he was all mine. But the ladies loved him. If someone flirted with him, he would put his hand over his heart and pat his chest (lub dub...lub dub) like a his heart was beating out of his chest. So funny now that I remember it.
Linda, I am praying that soon the good memories make you smile. I find myself smiling a lot when a memory surfaces. Maybe I am more excepting to what happens to me because I am so much older than most of you. I have lost most of my family and my friends and I know my days on this good earth are limited. I choose to be happy and appreciate each day. Love you....
LFL. Thank you for your words and I am glad it gives you comfort. I actually gave his eulogy...What I said that day was that".... God gave him to me to have and to hold from this day forward, for better, for worse, in sickness and in health for almost 37 years and now I have to give him back."
Just today, when the painting was one in my kitchen and the new fixtures in and it sparkles, I was wishing he was here to share in the freshened up kitchen..he would have said " Why didn't you do this a long time ago?" to which I would have said " I dunno" but really it was that I was saving like mad in case more in home or NH care might be needed.
You said was in your post, " when Lloyd still alive....." You know I can't bring myself to say it that way...I catch myself saying " When Ozzie was with me"....maybe I am still avoiding reality.
Blue, Charlotte gives good advice when she says to take a break.. I come on the site most days and scan the topics. Often I read something and because of my experience, which did not involve the NH and the P&P patrol I am not the best one to give advice so I refrain from offering comment there. Other times there is something I think I can offer. But I also found that at times reading the trials of those still on this terrible journey brought me down...some days I wake up and say " I'm happy" and other days not so much...it varies...it is a process and we all muddle through in the way we find works for us.
That is such good news. We all go through this in different ways. My no 3 and I have a huge blow up before the funeral...things are ok now.. At least maybe some of these troubles we go through with our kids is somehow " normal" as we all get used to our new circumstances surrounded by loss.
I lost my husband, Bob, on November 30th. He died 5 years after he was diagnosis at the age of 58. I miss seeing and spending time with him. If only 1 more day… beachgirl, Belinda Kelk.
Belinda, I am so sorry. Know that you did your best for him. I wish for fond memories to to return to your thoughts so you can be happy when you remember the good times.