Great reads and many tears

JC5

I’ve read a wonderful book “ Travelers to Unimaginable Lands “ and have also been using a great reference book “The 36 Hour Day”. Both amazingly helpful and have given me wonderful insight into the brains workings for both dementia patients and caregivers, But I am finding there is nothing I can find that helps me deal with the daily tears and sadness. I feel I am not the only one that wakes every morning and starts crying knowing what my day will be. Although I do my best to make it upbeat and pleasant for both my DH and myself. Just never seems to work out that way. What do you all do just not to cry everyday? Thank you

Just Bill

I have never in my life have felt the profound sadness and depression I have experienced in the last 3 years. What I have experienced is what I call the pendulum effect. It seems like my brain has to balance things by allowing just as profound feeling of euphoria and happiness. It comes on all of a sudden just like depression and I think it is a self protection system the brain has. I exercise, meditate, breathe, read philosophy and do whatever I can to release feel good chemicals into my brain. Maybe that is what is going on. This Saturday my wife had a dryer full of clean clothes all over the kitchen floor and it was emotionally the last straw. I went into a deep sad depression. Sunday and today I have felt great. She is still driving me crazy but I am at peace with it. Tomorrow I may be sad and depressed again and I will just let myself feel those emotions because tomorrow those feelings will pass. They always do. It's like a balanced cycle of depression and euphoria.

PookieBlue

Even on a good day, I have an overwhelming sense of doom. My brain is so fogged up with his dementia I don’t have a real life. I don’t think he is blind, but I know he can’t see, so I am his eyes. He is deaf in one ear and losing his hearing in the other, so I am his ears. His brain is broken, so I am his brain. I’m losing all of me as I am swallowed up in all of him. I know he can’t help it so I constantly try to maintain a normal life for him. It is so hard to keep my patience when he offers to help do something. He can’t do anything without my direction and even then I have to finish the task. I have so much I want and need to do, but my brain is mush and motivation is a thing of the past. This dementia path is like walking on glass with bare feet, but you just keep pushing on.

storycrafter

JC, have you read the book, Loving Someone Who Has Dementia, by Paula Boss? I found/find it compassionate and kind. I greatly appreciated her ability to capture my experience in words; so helpful to have it "labeled" out loud by someone else. It gave me important validation which I find helps me feel more grounded in this difficult journey.

One reviewer accurately wrote, "...she truly offers a 'psychological journey toward meaning and hope' that practically addresses the hardest realities of life, love, self-care, and loss."

Big hugs to you. It's a journey that carves deep grooves in our hearts and minds.

Iris L.

Please visit the General Caregiving board and post your recommendations on the thread called Books about Alzheimer's Disease so that the other members can readily find them.

tigersmom

Hi, JC. I am wondering how long it has been since your DH was diagnosed. We are almost at the two-year mark, and the first year I cried every day. Dementia was the first thing I thought about when I woke up, and the last thing I thought about before falling asleep. It is the most terrible loss I have ever experienced, and I have survived two failed marriages and my career falling apart at my peak earning power. All I can say is that I understand, and that as terrible as it is, eventually the tears will ebb a little and this life will become your new normal. And then it will change again. What helped me was grabbing onto the the lifelines I could -- regular phone support for me from a sister, and regular FaceTime for DH and myself with that sister and her husband. I also have phone support from two good friends. And after dithering for a while, I got my husband into a day program so he and I could both get a break from one another for five hours. I, too, read Dasha Kiper's book, "Travelers to Unimaginable Lands," and found it the most useful thing I have read. She is a clinical psychologist who was once a caregiver to a PWD, and what she explains, in ten different case studies, is why it is so hard to stop doing the things we know don't work -- arguing, correcting, expecting them to be the person we used to know. It turns out our brains are hardwired to do that -- to treat them as they were, not as they are. It explained a lot for me. I hope that as you move forward, you can get past the tears, if not the sadness. There is nothing we can do to change the outcome here, but there are things we can do to help us cope. I hope you can reach into your network and find those things for yourself.

mommafour

JC5, I believe Just Bill's description of the "pendulum effect" is true for me too. Lately, it's becoming more difficult to find things that DH enjoys doing. On his good days, we can go out to dinner, meet up with immediate family, or just take a drive. On those days I can blissfully pretend everything is fine. On his rougher days, I feel profound sadness watching him struggle through daily life. At the urging of my adult children, I'm planning to find a therapist soon to talk through some depression issues. Also, reading the experiences of others on this message board helps immensely.

Jeff86

For me, the sadness always sits close by. I am beyond grateful for those moments when my DW is clearly happy, is talkative (even if it’s mostly nonsensical), is eating well. But even in those moments, the loss, the absence, the pleasures in which she can no longer partake, are things that tinge those moments. We’re in year seven since dx, and the grief never takes a vacation.

I second the Pauline Boss recommendation. Tremendous insights, and giving names—like ambiguous loss—to the phenomena we caregivers experience.

JA20

This thread and all of the comments made I can completely identify with. I have nothing more I can add to help. I just wanted to thank you all for sharing your feelings and articulating what seems to be very common feelings for so many of us.

RickM

Yes this is a really great thread. I too have found the mentioned books very interesting and helpful. I too practice many of the therapeutic “tools” JustBill talked about, and I too start out each morning positive that things will be better today but by the end of the day I feel the sadness like a wave rolling over me and taking any energy left in my body. I should add that, remarkably, this “swinging of the pendulum” didn’t change much, although less in amplitude, after I moved my DW to MC. I think the move has given me more time to process the grief, which I suppose is a good thing. But, I am thinking that the sadness of the loss will never go away.

Drapper

I have found this discussion to be helpful. I am in the 6th year of my DH diagnosis. The past 2 have been exceptionally difficult as his abilities decline and his behaviors become more difficult. I too have a profound sense of loss and feel my world is getting smaller and smaller. No vacations, less friends, less joy, less love

I try to do things to keep myself balanced. I have very little time alone, so most of them need to involve my husband. I do try to make each day have enjoyment and peace, albeit for at least part of the day. I often fail.

I do exercise daily and walk outside most days. I meditate to Deepak Chopra He has a great on line app Less than $100 a year I also listen to Eckart Tolle on utube He focus is on the power of presence .. the power of now And transcending ego My DH really enjoys both these things I’m lucky that I watch my grandson who is 6 a few hours a week and brings me great joy We also listen to podcast online Untangled and Oprah Winfrey

I try to stay on track with these things, but I do easily get derailed by frustration and sadness. I wish I had more euphoric moments. My pendulum does not swing high enough at this point. I am happy when I just feel gratitude.