Today I woke up with a big knot in my throat, a sharp pain in my heart and the relief of knowing that everything will be okay. Last night was one of those days that I dreamed with how my husband was. We were talking and he sounded so clear, so like he was, he was so different (active, outgoing and very secured of himself). Yes, I still remember those days and I feel so guilty I dreamed about it and I wish so badly we can have our lives back. Today is one oif those days that I would love to have a time machine and go back in time and spend there even if it's 10 minutes, the times that we used to laugh without thinking about the future, that we could be all day long somewhere traveling and having fun without the exhaustion. I know, it sounds horribly selfish and for that I feel so much guilt. Sometimes I feel scared I will forget how his voice sounded and his gestures when he talked to me. The days like today I go back as early as our wedding day and try to recall every moment we shared. It is difficult to go through the day because then I feel that sense of guilt, it is so embarassing. I should not be missing my husband because he is here. I should not be wanting him to be back how he was because he is still that loving, kind and great man I married. But sadly once in a while I feel like today.

It is healthy to share these feelings but I will also share and explain what is happening in days like today. I am experiencing what Dr. Pauline Boss extensive investigation describe as "Ambiguous Loss"

There is physical presence and psychological absence. In this type of ambiguous loss, the person you care about is psychologically absent-- that is, emotionally or cognitively missing. Such ambiguous loss can occur from Alzheimer’s disease and other dementias; traumatic brain injury; AIDS, autism, depression, addiction, or other chronic mental or physical illnesses that take a loved one's mind or memory away.

So if you go to her website you will also find why does this matters:

Ambiguous loss freezes the grief process and prevents closure, paralyzing couple and family functioning.

I do not want to share my feelings just because I want to. I want the caregivers to understand that we ALL go through the same process, ones more than others but so far there are many explanations and pople have dedicated their lives to study these kind of areas. You are not alone.

Today is one of those days, one that I have every couple of weeks but one that does not let me give up. I look and count my blessings, look for solutions and scrape that pitty from my skin and continue walking because "Life is NOT over". This is just a new beginning, full of new experiences, one that I will walk by my husband's side and one that will help me hep others. So as a result my message is

"Have Hope in the future, Do take care of loved one but also remember to take care of yourself"



  1. Roxana,be strong. I know it isn't quite the same, but I get those same feelings about my husband. And I'm the one that is brain injuried! I feel so for you cause I know how hard it can be for you. Well I guess I don't really know, but you know what I mean. No one can even know what it is really like for another person.
    Just remember the other day when he did something so special for you. That was a HUGE break thru. For him to start thinking about YOU not HIM! I know alot of people that that kind of break thru took years to happen, if ever. God is with you and He has a plan for you guys, I know it. HUGS BACK TO YOU!

  2. Great information and thanks for sharing. I had never heard of ambiguous loss before. Makes so much sense. I think the person who has the injury also experiences this. I know I do.

    Like you, I tend to feel kinda guilty. I like where I am, but, boy, it would be nice to be here and have all the things I used to.

    I hear myself, in my head, talking perfectly, and when I dream, I am "normal." So, I would think it is natural for you to do so as well about Victor.

  3. Roxana

    My situation is so different than yours on certain levels, but I understand what you feel.
    I take care of both my parents who have Alzheimers and there are many days when all I want is my parents "back" but I have learned to be happy with what I have - one day it will be gone.
    Additionally as a cancer survivor from an almost fatal battle, I long for the days when my body was pre-treatment and "normal", when I could eat, sleep and carry on daily like a "normal" person. But again, I have to be happy with what I have - the alternative to living like this is not an option I am considering.
    We all have a lot on our plates, so to speak, but don't feel guilty hon, you have every right to feel as you do, as do we all. We are, whether we like it or not, afterall is said and done HUMAN!!!

    Hugs to you and Victor

  4. Dear Lee, Debbie and Nancy,

    Thank you for yoru encouraging words and your kindness. Today has been a better day, but I want to be honest so other caregivers don't feel they are alone, we all go through our ups and downs. Fortunately my ups are 10 times more than my downs and that is one thing my husband and friends make comments about :) Yesterday was one of those downs. I was thinking and the true thing is that I am so blessed that my husband is still here with me, that we acn still talka nd have great times. I just love to have him here and I thank God for allowing us to spend many more years of happiness. Thanks my dear friends, I hope one day I get to meet you in person and hug you, but for now receive a huge virtual hug from me ;)



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