How do you deal with the constant state of mourning even though they are still alive?

You are not crazy and the grief you are feeling is not inappropriate.

In her very helpful book, "Loving Someone Who Has Dementia," therapist Pauline Boss writes about "ambiguous loss." The person we love is both here and not here at the same time. We are mourning them at the same time we are taking care of them. It can be somewhat reassuring to learn that what you are experiencing is common and normal -- at least it was for me.

I think the mourning we experience after the loved one dies has a lot of relief in it.

Hugs to you.

It is a strange place when we are grieving the person our loved ones used to be. For me it can be very lonely and isolating at times. One thing that helps me is the concept of this is the path. I am not going to "cure" my Mothers declining health. It is not in my power. What is in my power is the way that I relate to what is happening. It is sad and overwhelming at times but also ordinary. I come here to see that others are going thru the same trials so I know I am not alone. I try to embrace the good times we have. My heart goes out to you because I know it can be so difficult and lonely. It may not feel temporary while we are in the midst of it but it is temporary.

Your letter made me cry. I feel so bad for anyone who is a cargiver, especially for a person with dementia/alzheimers. As it has been said, you are not alone, you are not the only person feeling like that. I guess I am lucky because my husband cannot communicate, having lost the power of words early. He makes sounds. So he rarely gets mad about anything, or if he gets upset he just throws his hands up in the air and makes a few loud grunts. I try to find humor in everything, I try to make him laugh, I try to make everything funny, even his not wanting to shower. He is not the strong man I married, he is a child now. But a good child. I don't think of him as my husband, but not sure how I DO think of him. I know when his life is done, he will be in a much greater place. But I will miss him so much, even more than I do now. I tell myself often that it could be much worse. It is out of my hands.

My mother had 3 strokes in a row. She went from been an independent, strong willed person to someone that had to learn to walk, talk, eat, write, etc. again. Because of these strokes she developed dementia and requires 24 hour care. It has been a tough road. Prayers and laughter have helped a lot. I believe there are lessons for us all to learn and share with others. Conversely, my father passed suddenly of a massive heart attack 12 years ago. It took me a very long time to get over this and I still cry about losing him. My father-in-law passed from renal cancer…the difference is when someone is unwell, we get to mourn them before that actually pass and the lost is not as traumatic as a sudden death. As one person told me recently, death is a part of life. I believe when we leave this world, we will be reunited with our loved ones…there will be no sicken or pain. My best advice is laughter and prayers.

Dear AZ, we all here are in more or less the same boat. Each experience is diferent, each situation is diferent, /we are all unique, and at the same time equal.
In my case, with my wife, I perseived the diference when I read Boss, her perception of the diference btwen death and "ambiguos" death, is brilliant.
I did not had the experience of seeing my parents in this cisrcuinstances, my mother died when I was 14 and manyyears later when my father had a stroke, I was far away.
Because of that, I don´t know what is worst, much less if there is a diference among the situation of a parent or a wife/husband.
And in any case, there is not a diferent result, we have to deal/endure a cruel situation, that can be for along long time. And I have to remain me constantly that what she is doing is not because of her. It is the disease. And patience.
I wish you much luck and support. Many hugs

AZ, your situation might be too far along for the 36-Hour Day. I can't imagine how bad it is at the end. My mom is still cognizant, conversational and ambulatory, but she is still so different from who she was that I completely understand what you mean by "constant state of mourning." And Dem29910, my mom is in a memory-care facility where there are activities, socialization and multiple caregivers 24/7 who know how to handle dementia patients. Plus she has freedom to roam the "house" at will. My mom's agitation and aggression, etc. have calmed down to almost nothing since she got there. I think the safety and security of the home has helped her tremendously. What I'm trying to say is, while no living/housing situation will ever be ideal when dealing with dementia, that the right kind of "facility" may actually help.

I totally get what you are saying...when my journey with mom started, I had no idea what it entailed. After a couple months had past, I decided to keep a journal. Mostly for my own sanity and to help me keep track of my moms progression. After she passed away, I was so glad I did so....for the sake of my siblings whom could not be here for moms last months, plus it really gave me something to reflect on. Mom went downhill so fast it seemed like such a blur, I have been able to go back and see what helped her, and through this be able help others who might be experiencing the same situations. Mom left me a legacy of love. The journey we took together was a testimony of that love. God bless the caregivers!

Thank you, jeannegibbs. I really appreciate you taking the time to respond. I see you quite often on agingcare, and I always read what you have to say when I notice your name. There is a pastor who comes in for hospice for mom and us, and I had a nice talk with her the other day along with another wonderful lady she brought here with her too, and they made me feel a bit better. I will have to check out that book you mentioned. I went and bought the book "The 36-Hour Day" by Nancy Mace and Peter Rabins too. I haven't started reading it yet, but a few people highly recommended it, so I'm hoping it may help too.

When my dad died from Alzheimers it was a relief that he was no longer suffering. I also found that his death was easier for me to go through because I had been through what you describe for a few years, not with him like I am now with my mother, but none the less it eases the ulitmate loss by degrees each day.

Thank you, Maria17. As time has gone on, I've realized that things can not continue as they are, either for my mother or myself. Monday I'm going to one of the two facilities in our area that accepts Medicaid to begin the process. I do not look forward to it, but I know it has to be done. I would not wish this experience on anyone, though I know there are many,many people out there in much the same situation. Thank you so much for your encouragement.