I'm back. How can I stay away from this site. Anyways, if you don't know my backround,my dh died 2 weeks ago. Everyone is asking me if I'm relieved . The answer is N O. I am happy that he is not suffering anymore. But relieved, NO. My dh went through the stages differently than some of you. he was have memory problems in 2005 and was put on Namenda and Exelon patch. For 4 years all it seemed to be was memory problems. Then in 2010 it all started. Anger, personality change confusion, following me. I didn't know anything about this disease because the doctors all said it was a memory problem. So I started reading, and reading and reading. He was able to walk our daughter down the isle March 27, 2010. But that was the last time. He went down hill so fast, he zoomed through the stages. The nurses in the nursing facility could not believe how fast it was going. 10 months ago it started going down hill until 2 weeks ago when he passed. I guess I believe, when ever he did see me and saw my tears he knew this was not what he wanted for him or myself and I feel he pushed it along. That is just my feelings, I know there may be many of you that don't agree. But again, I'm glad he is finished with the suffering. Now I have got to find a way of helping myself and not feeling guilty that I couldn't understand the disease and make it easier for him instead of having anger. That is one thing I will never get over. If only I knew what to expect I could help him when he was scared , I was upset.
PaulaM, I am so sorry people are saying such things to you. It is very insensitive. You have deserved your star, so be sure to add it. Also, come back when you can and help guide those of us right behind you in this joruney.
Please do not feel upset. You did the best you could with the information you had at the time. Hugs...
You could never have known exactly what was to happen. All of our lo's progress at different rates, symptoms vary with all of them along with the severity of same. You must believe that you did the best you could. There is a Higher Power that determines. Your dh is at peace. I am sure he was not always scared especially at the end. We cannot control everything. We like to think of ourselves as powerful but in reality we are just human bumbling along. Come back often.
Paula, I am so sorry for your loss....and I don't understand why anyone would ask such a question of you. I can't imagine how you feel; but it must have been awful to have your husband's illness progress so quickly...it is difficult enough to go through the phases gradually and be able to grieve for each loss before the next one comes along....but you hardly had time to grieve at all while you and your DH went spiralling down through the phases in such a short time. How could you possible have had the time to understand, let alone accept what was happening? Please don't be so hard on yourself...give yourself the time you need to grieve now....and remember your friends on this site want to know how you are doing, so stay in touch.
Paula - Is there anyone here who hasn't said, 'if I knew then what I know now.' We were in love, we were suited, we had a boy, a girl a little house with a picket fence, a dog. What could go wrong? But things kept going wrong, I pushed him away, I was disappointed, angry, I dragged him to marriage counselors who told me to leave him--but I stayed. How was I to know that I was dealing with a brain disease for years? When I finally knew, I felt so bad that I let him go thru so much of it alone--but he didn't know either. I could have comforted him, been more understanding--but I honestly didn't know--and I would never knowingly hurt him for the world. So I forgave myself for not knowing, none of it was my fault and my reactions were perfectly normal--just as yours were. One of the reasons I stay here is because I want others to go easy on themselves, how can we possibly know--even doctors tell us it's depression or stress--whatever. It's often years before the dx is a brain disease. Most of us do our best--one can't expect more than that. Blessings.
Paula - you need to forgive yourself for being human. You need to forgive yourself for feeling guilty. As a parent we raise our kids the best we can with what skills and knowledge we have at the time. The same goes with this disease: you did the best you could with the skills and knowledge you had at the time. You have no reason to be angry or feel guilty because you weren't how you wish you could have been. Hindsight is very easy.
I understand what you are saying land I should forgive myself, but I think now of what he must have felt when I got upset with him, and he didn't understand why, or why he did what he did. He was aware something was wrong and that alone was frustrating for him, and I just didn't get it. I know I didn't know what was happening , but I still feel bad because he was so afraid and I made it worse.
Paula, how wonderful to see you posting ♥ I am sorry you have had to deal with such insensitive people, what a horrible question to ask! You are kinder than I, I fear they would have landed rather hard on their ahhhhhh a$$!
I can understand your feelings; I think all of us here do. The thing you need to remember Paula is that you did the best you could in an impossible situation. If it brings you any comfort, if there is one blessing in this damned disease, it is that our loved ones can't recall anything, that includes what we perceive we did wrong. He knew you loved him, and he gave you a final gift of letting you know he still loved you. I hope that memory can bring you comfort and help wash away the guilt. Much love and lots of ((Hugs)) ♥
Paula--I'm sure there isn't one of us here who didn't experience anger at some point. How should we be expected to know what's happening early on--as Betty said, even the doctors don't know--my husband was misdiagnosed with depression. What matters is not that you got upset with him; what matters is that once you knew what was happening, you were a loving and devoted caregiver. Your husband knew that he was a lucky man in that aspect, and he was even able to tell you so near the end. Don't dwell on what you think you did WRONG, think about what you did RIGHT under such trying circumstances.
You have indeed earned your star, Paula. My husband died in early June. I've been out on Monhegan, the island I love in Maine, much of the summer. There are several widows there; I'm just joining the gang. One of the last-year ones lost her husband in a sudden stroke, another after a long bout of cancer, another after a sudden heart attack... and on and on. After a year, they seem to have more or less recuperated. And now are telling me, it will get better. You look much better now than a month ago... and so on. None of them had the long dementia battle with their spouses, though some went through it with their parents, and everyone is loving and sympathetic. Life goes on. And it will for you as well.
Paula,my DH passed fast to, he entered the nursing home and was gone in 6 months, I know how you feel heck no we don`t feel relief, I still want Bob back and it`s been almost 2 yrs.
Paula, no matter what happens there is always some "well meaning people" that are not going to say the right things. I get so upset that they can't for the life of them figure out what to or not to say. When in doubt don't say anything is my clue. I am sorry that happened to you.
It is hard to believe that some people can be that insensitive but people are people and when they don't know what to say they stick their foot in the mouths. We pray that you will continue to have the grace to forgive them. Bless you....(((hugs)))
I guess everybody experiences things in their own way. Nothing is "right" in this AD world.
At the Senior Center that my wife and parents attend, a man's wife recently died an AD death. He was never very vocal about her condition and we only knew about her condition because we are always ready to talk about my wife so he occasionally discussed it with mom.
Anyway he has a position of responsibilty where people are depending on his work. The question arose whether somebody should relive him so he does not have to participate in his duties. (time to grieve?)
He let it be known to those who needed to know that NO he did not want any mention of the death and he was ready and able to continue with his regular duties. (was he releived?) Others thought it strange, my family felt that perhaps he had just done all his grieving a long time ago.
I have been asked If I am relieved. I offer that I am relieved my dh suffers no longer, that he is at peace. I miss him. I mourn the loss of my husband before AD and the future we might have had. Yes, I feel like I have been grieving for 6 years and maybe for some people that appears to be some sense of relief from the pain of grief. I think I'm just numb, sealed off from the nightmare of AD caregiving. I think people mean well, they just don't know what we know.
I believe all that the outside world sees is the incredible stress we caregivers all are under and, for most of us, for many years. It is a burden, a very big burden that I many times long to escape from. I think about the "end" once in a while and I think we all had this discussion recently on this forum ... that in spite of all the venting we do about our spouses with this ugly disease - we're angry, we feel trapped, depressed, lonely, etc. etc., we all know how much we will miss them when their time on this earth is over; not so much the AD spouse, but the spouse we married and the life we once had. I will feel a sense of relief that the incredible stress is over and that my honey can once again be himself in the house of the Lord.