I see a lot of posts from caregivers who are grieving terribly for their loved ones. This is why I decided to post this. Please feel free to share your experiences so that others know they are not alone.
Most of you may have run across the Five Stages of Grief before. But for those of you who haven't, here's my interpretation of them as they relate to AD/dementia caregivers.
I must first warn you that I am being very honest here in my thoughts and feelings.
1. DENIAL: "This isn't happening." I remember how I felt when the doctor told me and my dad that he had AD. Although I knew in my heart that something was wrong, I almost would have rather heard cancer than AD. My dad COULDN'T have that! I didn't want him to. I had a grandma and grandpa die of AD and I also had a brother die of cancer. My brother died only seven weeks after learning he had cancer. In both my head and heart, I know that my brother died with dignity and he knew he was loved. And after my brother's death, I was able to work through these stages of grief. His life and suffering was over. My dad is still alive so I don't think I'll get all of these stages until after his suffering is over.
2. ANGER/RESENTMENT: Angry at the diagnosis. Angry or resentful at the person and/or disease. Even sometimes anger or resentful of others.
This is one that still affects me today. I still sometimes feel angry and resentful of this disease years after my dad's diagnosis.
3. BARGAINING: Negotiating to change the situation. "Please God, I'll do anything if you just make my dad better".
For me, this came almost instantly after dad's diagnosis. I was willing to bargain just about anything to stop this disease from taking another member of my family. As I said before, AD has taken two grandparents from me. It's now taking my dad and his brother and my mom's sister.
4. DEPRESSION: "It's really happened".
This is the stage where we realize that no matter how much we do for our loved one, there is nothing that will change what is happening to them. No matter how often we visit them, no matter if we keep them home or put them in assisited living or a nursing home, no matter if we do EVRYTHING right, we cannot reverse the clock and make things better.
This is often when we see ourselves as a failure no matter how well we did.
This is also when we acknowlege the disease and it's outcome. Acknowledgement often brings depression.
5. ACCEPTANCE: "This is what happened".
I don't know that I will accept this fully until my dad finally is relieved of this horrible disease. Sadly, that will be in his death. And there will be a whole different grieving process. But until then, I will continue to do the best I can for my dad to make him as comfortable and as happy as possible.
Someone once told me to always take care of myself as well as I do my son. I didn't think I deserved that and I certainly didn't think I had the time. After all, I had others to take care of. Soon my health started taking a turn for the worse. Then for a while, I had to depend on others to take care of ME. Why? Because I didn't take the time to go to the doctor. I wasn't eating right. I wasn't exercising. I wasn't doing anything that was good for ME.
Take care of your spiritual (spirituality is not just for the religious), emotional and physical needs. Allow yourself time and space to grieve. The negative feelings are a part of the grieving process. We need to allow ourselves to experience them to get past them.
And if you find yourself regressing back to a stage you had been through previously, don't fret. None of us experience grief in the same way as another. Each of our situations and experiences are unique to us.
Be kind to yourself. YOU ARE A VERY SPECIAL PERSON EACH AND EVERY ONE OF YOU!
I see a lot of posts from caregivers who are grieving terribly for their loved ones. That is why I decided to post this. Please feel free to share your experiences of your stages of grief so that others know they are not alone.
Love and peace to all.
Live, Love, Laugh.
Last edited by LuvMyLilDoggie; 06-03-2006 at 04:50 PM.
Thanks Barb .. I do believe I have gone through all of the above as Mom got worse and worse. It is indeed grieving for her real self, before she even dies.
I am in NY visiting my brother and SIL and my oldest son is also here (just 1 day) and we visited Mom yesterday. She is OK. A shell of her old self, but still a pleasant friendly person. Her vision has deteriorated even more, she could not see the pictures david brought of his daughter and his business trip to India last week. Sad. She tried to tell him things about her past, which he asked, thinking her long term memory wolud still work. She did not know the right dates (like the year she got to America) and who came with her, and that her 2 brothers had passed away. She looked at me and innocently asked wher her Brother R now lives, "I forgot his new address." Sad.
David and I will visit her again this morning before he has to drive to Newark airport to go back to Germany. I have a whole week to be here. David was impressed with the frienly caring atmosphere at the NH.
One thing I forgot to add is guilt. For me, that came full force in the forth stage. It's natural for us to feel guilty when we've done our best to help our loved one and still, the outcome is the same. Our parents raised us. Our spouses gave us the best years of our lives. Why, in their time of need, can we not protect them the way they protected us? I think that's a question most of us wrestle with at one time or another.
But we need to sometimes remind ourselves of these things:
Our parents did the best they could but still we were occasionally bruised and needed bandaides. We got our hearts broken and cried many tears. All the while, our parents were doing the best they could and felt terible when we were hurt or sick because they couldn't have prevented it from happening to us no matter how hard they tried. They wanted to take the pain away but they couldn't. They understood the feelings we are or have experienced because they've been through it.
Of course, raising a child is very different than what we are experiencing with our loved ones. But the feelings are much the same. We are not perfect. We make mistakes. That's the natural course. If we accept that and believe that what we are doing is the very best we can do, I believe the guilt feelings will naturally lessen and with time, we will be relieved of it. It's not our fault. It's an awful thing that happened to a wonderful person that it should never have happened to. But we didn't cause it. It happened. As awful as it is, it happened and there's nothing we could have done to stop it or prevent it. So the guilt should not lie on us. But we as Super Person caregivers take that guilt onto ourselves because there's no other explaination for it. We did all we could do for our loved one but still it happened. We must be a failure. NO! We are not failures! We are SUCCESSES! We succeeded in keeping our loved one clean, warm, safe and well taken care of in their homes or ours for a long time. We succeeded even where we thought we had failed. You see, in recognizing our own limitations (limitations, not failures-there's a difference), we become a success. How many times have we turned on the news or picked up a paper and saw "78 year old AD man disappears after leaving his home in the night." or "Woman with dementia struck by bus and killed while walking in a daze."? Not a lot but too many times, right? Often, the cause is not neglect by a caregiver. It's caregivers who are burnt out. It's those who do and do and do and do until they can do no more. It happened to my aunt with my grandmother. Yes, in my opinion, my aunt failed my grandmother by not putting her in a NH sooner than she did. My aunt didn't recognize her limitations. That may anger some people but that is how I feel. The ultimate goal is to keep the AD patient safe and sound. And if we can't do that and don't place them somewhere where they will be safe and sound, we've not recognized our limitations and therefore, we have failed. I pray that my sister and I will both recognize our limitations.
No one here is a failure. Many of us are trying to figure out what our limitations are. Listen to your heart and your head.
All of you have helped me so much and I'm very grateful. I've never met any of you but I have a very special love and respect for you.
Martha, I'm so happy you went to NY and visit your family. How nice David was able to be there too! Good that David got to see his grandma. Have a great time with Bill and Anna and I hope you have time to visit with your friends and go to your favorite restaurant and such.
Wow ! Your post could not have come at a better time for me than now. It's very late here and I am up alone. Been looking at pictures of mom when she was young, healthy, and how I like to think of her, right before going to bed I decided to look at the board. You have no idea how much strength I gain from this place and all the great and wonderful caregivers who I dont know but feel already close too. I greive over mom constantly it seems, Yesterday she thought she had cooked a full meal for her family and always it's about her Dad and two brothers who have long since passed..... sad is true Martha... She thinks she sees them and talks to them at times always she is waiting for them to come and get her. It breaks my heart and I wish there was a way to help her but of course we all know there is not. I have alot of issues Im trying to work through about all of this, it seems I go backwards more than forward. I always dream about bringing her home but Im so scared to even try b/c the truth is I cant handle it and that makes me feel like a failure....... I cry alot, I stay irritated at my sons and husband and basically I withdraw from everyone and everything pretty much. My family wants me to seek counseling b/c they are so tired of seeing me this way all the time but I dont have much faith in that. Anyway, thanks for those steps I will try to reread them several times.
My dad is not at that stage of the disease just yet where he thinks he's a child and sees people who have passed on. But I remember well what I felt when my grandma went through that. It made me feel mostly sad and angry. I didn't understand as much about the disease then as I do now and still I really don't understand much if that makes any sense.
I believe the mind that is affected by AD still has the ability to create defense mechanisms. One of those defense mechanisms is the ability to recall and eventually go back to the past where everything was so nice and happy and worry free.
Jess, in your mom's mind, the past is a beautiful place where she feels safe and happy and she doesn't remember the pain of her illness and the loss of those who passed on before her. And I believe that AD patients only go back to their past when they accept what's happening to them and trust that they are being cared for well enough in the present time that it's safe for them to relax. Think back to how your mom was when she was in that agitated state. She was scared then. She was scared for herself and she was scared for you. She knew you were doing everything for her but you weren't taking care of yourself. She never thought of you as a failure for sending her to the NH. She knew you wouldn't be able to do this alone. She understood that much. But you didn't at the time. And that's part of the reason she was so upset. The other part is the illness that she was so upset over. She feels safe and secure now. She knows you did the right thing for her and yourself. She's happy with your choices for her and that's why she feels safe enough to relax and go back to that time when she was so happy and carefree.
When you visit her, ask her things about the place she's in and the people she sees. Go back there with her. It will make her happy and that's what you want for her. I did that with my grandma and I have some very fond memories of the times I pretended with her. Of course I missed my old grandma and I still do 22 years after her passing. But I have some very good memories of my young grandma too.
Have you been to your doctor and told him of your feelings? If you're not fond of counceling, an antidepressant might help take the edge off at least.
Jess, you were one of the people I was thinking of when I ran across the Five Stages. I'm glad you responded and I hope it helps.
Live, Love, Laugh.
Last edited by LuvMyLilDoggie; 06-23-2006 at 09:46 AM.