Anticipatory Grief


Brad, heading to pre-school. Sept. 2006

Brad, heading to pre-school. Sept. 2006

I am always depressed when the kids go back to school. Whether I am working full time out of the house or working as a full time Mom, the feeling is the same. It is a sign of time passing, a reminder we didn’t get everything in over the summer that I had hoped and planned to and the start of another year of pushing them further out of the house.

Jim is now the stay at home Dad and he gets to spend a lot more time with the kids than I do. For that, I am jealous of him. That used to be me and when I was fortunate enough to be home with them I don’t think I appreciated it the way I should have.

It seems to be a human inclination: you never appreciate what you have until it is gone.

The torturous part about this whole Alzheimer’s journey is the knowing what is coming. So I KNOW I should be appreciating what stage Jim is in now: knowing it will only get worse. I tell myself daily not to think too far ahead (which is very difficult for me not to do). Yet at the same time, I can’t focus on the past because I will then compare the new Jim with the old Jim and that isn’t fair or healthy.  So I am trying to concentrate on the present. Talk about a difficult task. Staying only in the present is almost impossible for me while raising a family. I am not supposed to think of how bad it is going to be or comparatively speaking how good it was.  My natural inclination is to be positive and upbeat. Some days I am not sure my natural inclinations shine through.

Frances, first day of kindergarten. Sept. 2006.

Frances, first day of kindergarten. Sept. 2006.

How do you deal with the NOW, plan for what you know is coming and appreciate how good life is right at this moment? As if I don’t have enough on my plate, I have to figure all of my emotional right and wrongs out as well.

Recently I received a wonderful message from someone very special. Someone I have known a long time who lost her own mother to ALS/Lou Gehrig’s Disease. I would like to take just a moment to let you know what a truly wonderful person her Mom was. I have never  met a person so honest, loving and just one of a kind. Her smile radiated happiness and love and she never had a bad thing to say about anyone. Ever. I am so glad I met her and I often think back to conversations we had or to her smile and contemplate how I handle things versus how she handled things. The last visit we had before she passed away was one full of laughs, even though she was unable to speak or move. Her eyes. For the first time in my life I could actually see someone laugh with their eyes. You read this in novels all the time, but I have never been able to read someone’s eyes. Until that day with her. I saw love, happiness and laughter in her eyes. She was leaving behind 3 beautiful daughters and it was heartbreaking. But her attitude made it so much easier for those that loved her and cared about her. I want to be able to do the same for Jim and those that care so deeply about us.

This is an excerpt from the e-mail I received:

… I went to a shrink for a while and he taught me the phrase ‘anticipatory grief’ which is exactly what it sounds like. You know what’s coming (somewhat) and in gearing up for what’s ahead you find yourself feeling the things that you think you will feel down the road. Basically mourning someone when they’re still around. I know this doesn’t really help but it’s a name for it, anyways. And in a way it helped me beat myself up less for being so depressed because I understood what I was feeling a little more and it was easier to be at peace with it.

So, I am sharing this with all of you in the hopes that you will love yourself a little more and in the process I will love myself a little more.

Frances and Brad first day of 7th and 4th grades. Sept. 2013.

Frances and Brad first day of 7th and 4th grades. Sept. 2013.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (6)

6 Responses to “Anticipatory Grief”

  1. Birdie says:

    I just started reading your blog…and your strength amazes me. what you said today about thinking of the future…i do that often when it comes to my dad. I did it however until someone at the alzheimer assoc said STOP!!! I was told to take joy in the really good days and try not to focus on the “what’s to come.” I do do this…and almost shut my mind off to the scary what-ifs. With my dad, it may be something as him giggling about something…I focus on that rather than the fact that he can hardly get a word out or say what he needs to. Sometimes its the little giggle or smile or hug that I can recall, remember and then suppress those not so good days. :)

  2. Marti C. says:

    Just want you to know I lift you up in prayer and your precious family. I saw my mom thru dementia of some sort and until her dying day her eyes always smiled, even when she didn’t know why. I said it was the love of Jesus in her heart shining thru her eyes. We are here for you, I hope you can feel the love and admiration, even on your worst day, you are an amazing woman and I am glad you are sharing your life…prayers and love for you and yours!

  3. Laura says:

    Well put. Thank you for this. Some days the whole situation is overwhelming and uses up every emotion. Other days, it is tucked away in a safe place – not to be thought of.
    My mother is living with ALZ, being taken care of by my 86 yr old father. They live 6 hours away by car. It’s never a dull moment.

  4. Emily says:

    Hi Karen,

    I stumbled upon your post after signing up for the Walk to End Alzheimer’s. my mom was diagnosed with early onset Alzheimer’s over a year ago at age 60 and it had changed everything about our lives and hopes and dreams for the future. I understand completely the range of emotions you experience on a daily basis and how the thought of my family having to continue to suffer through this for years to come makes it hard to breathe. I appreciate your honesty, candor, and bravery. I hope to continue to read your blog and I too will be joining the ranks to fight against the most devasting disease imaginable.

    Emily O’Hara

  5. Michelle Fox says:

    Karen, you are working so hard at not only advocating for this disease and it’s rumination but also for yourself. You are doing a great job. I have seen such growth in you since I started reading your posts, you deserve kudos for all of the work you put into the devastation that has befallen your family. Keep moving forward but in the case of Jim, just live in the moment, as hard as that is. We just put mom into Memory Care this week. Oh, so very difficult but necessary. We are on our 11th year, she is 82. It has been really tough this week. Never in my wildest dreams would I ever have imagined…this is where we would be. I have to be good with…I have no other choice. The financial strain is ominous and that is what really scares me. I pray….

  6. I so admire your writing and your advocacy work. I know anticipatory grief from my experiences with a mother with Alzheimer’s who died in 2007 and a husband who had lymphoma for two years before dying in 2008. My mom was in her 80s and my husband in his mid 60s, neither young and with young children. It breaks my heart open to try to imagine what you go through. I honor your love, spirit, and endurance. Thank you, Elaine

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