There has been much anguish over placing our loved ones and of course bereavement and grief after we lose them. there is what is called 'survivors syndrome' which is a real take on maybe a few of the many reasons we feel so much pain and remorse after placing and or death. some of the classic symptoms are' anxiety, depression, social withthdrawal, sleep disturbance, nightmares, physical complaints, along with emotional lability with loss of drive'. as you can see, any and all of these we feel while grieving after placment OR death. i have read countless numbers of many who placed their spouses and i am not too sure the placement isnt sort of a facimile to death-like feelings as well. the same feelings of , abandonment, frustration, anger, and feelings of inadequacy at placing our spouse can bring on the same grieving feelings and symptoms. many times its not our choice but dementia disease that makes the decisions for us but even so we want to find guilt and blame ourselves for being the one left behind. we tend to forget we are not the ones who have caused suffering but along with our spouses suffer the consequences of the disease too. giving ourselves the needed persmissions to enjoy life again will only come again once we release our minds from the hostage feelings AD places on us from the very diagnosis. maybe understanding that its a real symptomology and of sorts like a 'post traumatic stress syndrome' after the fact, can help us find an easier guilt free life after.
We all stay on a roller coaster ride from the day we first suspect that dementia/Alzheimer's may be the reason that our spouses are not themselves any more, until about six months to a year after they are gone. Some of us have very long rides (20 years or so) and some have short rides (3 years or less), but most of us have 5 - 8 years from diagnosis until death. We become survivors on the date of diagnosis, and we have to make so many decisions for both of us from that point forward that it adds to the stress of knowing you are caring for a dying spouse, and do not have any way of preventing it from happening; trying to keep them safe and stress-free; trying to make the world understand what you and your spouse are going through and that they DO have Alzheimer's or another form of dementia; and getting the help you both need in order to survive.
Every day I wake up and thank God for another day, and ask for strength to get through it, doing the best I can to take care of my spouse and myself. It is all any of us can do.
None of us have anything to feel guilty for. We all deserve medals for doing the best we can.
Yes oh yes. That is so much how I am feeling. Actually feel like traumatic stress even now. It has gone on so long that I am feeling like I have been traumatized, we are starting year 11
Jane, I salute you and I'm filled with awe for how you have taken care of your husband for 11 years. I have been doing it for a little over 3 and sometimes I wonder how long I can do it without going nuts! You must be and are a very special lady.
Tomorrow we are going to a psychiatrist to try to find medications to calm my DH's rages. He talks, talks, talks, but I don't understand anything. It doesn't matter how I respond or even IF I respond to him, it always leads to anger. He isn't understanding the simplest of words -- I wonder if he can comprehend at all. We went to the store yesterday and after five minutes he started to get agitated and wanted to go. I agreed immediately but that made him angrier. We finally made it to the car but he wouldn't get in and walked away. I followed, of course, and he finally stopped close to a woman shopper who looked a little concerned. I convinced him to get in the car but he was very unhappy. He has never touched me in anger in any way but I find myself wondering if he is going to punch me. When these rages come on, he is not in control of himself. He has bitten himself, gouged himself with his nails and punched the wall. No blood or bruises but how far it is from hurting yourself to hurting another? When the rage fever passes, he is still confused and deep in dementia, but sweet and loving. I used to be able to break the rage with my calm patience, but I can't reach him any more.
We are seeing our elder law attorney tomorrow to begin the Medi-Cal approval process. And we are starting to look for a facility. It breaks my heart to think of him being away from home -- I know everyone suffers this. And I wondered how I would ever be able to have a life without always feeling I couldn't be any happier than he is at any given moment. How wrong that would feel. You know that old mother's saying, "You're only as happy as your unhappiest child," and wondered if would be the same in this situation. That made me think about Survivor's guilt so I looked around and found this site created after 9/11. This link offers some great insight into the kind of trauma survivors can experience. http://www.giftfromwithin.org/html/Guilt-Following-Traumatic-Events.html
I was thinking I was really off track and was unable to put a name to how I am feeling and all the emotions I am trying to deal with. You have really helped. I am finding that some folks think that once he entered placement that I was free to just do what I want and to just not be involved or care for him. They have no idea about all the things we have to take care of for our partner. It's different care but still care or the emotions we go through no matter if they are in or out of care.
Very well said. I had placed my DH almost 2 years ago and went through so much intense emotion that I shutter to think about it now. Terrible anxiety coupled with bouts of sobbing that seemed uncontrollable not only for him but the fact that I had so little control over things. Since my DH passed 3 weeks ago, I have a sadness in my heart for sure but the intense emotions that I had when I placed him seem not to be there. Along with the sad heart, I do feel gratitude for the peaceful way he passed and how quickly he passed without lingering. One of my greatest fears was that he would be bed bound for months wasting away but not actually dying as I have heard so many stories like this. As you say Jazzy, I too felt when I placed him I would have some measure of "freedom" but that was definitely not the case. The caregiving just took on a different meaning but still involved intense emotions both up and down for me.
I'm still trying to get used to this so-called "freedom." It's been eight months since he was placed and I'm trying to get used to it, but no such luck. It has been so very, very hard. I have the time but not the will. Will I ever have it? I can't seem to will myself to do much of anything, and when I do I find myself so tired the next day that the cycle starts all over again. This must be worse than a spouse dying - watching him die for over nine years and now the final insult - the nursing home. The grief is occurring now. What will it be like when he is gone?