How do you handle such deep sorrow?

Flowers456 · February 16

My DH has EOA and has been also suffering from complications of Ulcerative Colitis. He’s in the hospital. He won’t eat that much because he’s incredibly picky and can’t reason to himself that his body needs food even if every meal or protein drink isn’t perfect. He can’t walk anymore. He won’t even try. And his cognition is worse.

He believes he walks up and down the hallways in the hospital. He doesn’t understand when they told us he qualifies for Hospice.

Last night, we were video chatting. I was looking into his eyes as he was telling me he was going to come home and walk on the trails with our son, cook homemade soup in the kitchen, and apply for jobs.

How do you look into someone’s eyes when they’re telling you things that are not reality, and you are so incredibly sad for them? How do you look into someone’s eyes, and you know they are dying?

My mind doesn’t even know how to cope. I don’t drink alcohol. I don’t do drugs. I don’t even feel like comfort eating. I just walk around with my eyes wide open and cry at the drop of a hat.

BPS · February 16

It is hard to sit and make plans for the future that you know will never happen, but it is the kindest thing we can do. It lets them think for the moment things will be better and they won't remember the conversation so it helps them to stay calmer. It is the best thing we can do for them.

Michele P · February 16

https://alzconnected.org/discussion/75383/how-do-you-handle-such-deep-sorrow

This is heartbreaking. His reasoning is broken. Agreeing with his reality is your best option. You have to accept and understand his world is not our world and never will be again. It’s called a therapeutic lie and is the best we can do for them.

trottingalong · February 16

You dig deep within your soul to gather the strength to smile and tell him how much you look forward to that. It will not only help him, but seeing his happiness will help you.

Call me Gram · February 16

Flowers456, my heart breaks for you. I agree with the advice you've received here, but make sure you have a place to turn for yourself. As soon as my DH started showing serious symptoms, I sought out a counselor. In a short time, I ended up on an anti-anxiety medication (SNRI) to manage the panic I was feeling. There is nothing wrong with asking for help for yourself. You need support.

We are here for you and we can feel your heartbreak. I'm praying you can also find some comfort and support in your friends, family, or community.

annie51 · February 16

So sorry for this heartbreaking experience. We have to cope with so much, but we find a way deep down to get through it. If not, a therapist is good idea. Crying was my release but I had a hard time to hold it back in front of my DH. Our hearts are with you here to support you.

tonyac2 · February 17

I join the others in their sorrow and heartbreak for you @Flowers456

I agree, get some type of help - medication, counseling…

When you think about it, we’re all dying. We all just have this day, this moment. Making it the best it can be for my LO is my top priority. If he says he can walk, find a job, etc so be it, I live in his reality. I can meet him where he is, but he can’t meet me where I am.

Enjoy the time you do have, cry when you need too and keep coming back. Hugs.

SDianeL · February 17

so sorry you are going through this. We know how you feel. It’s anticipatory grief. We handle it by doing the compassionate thing for them. Meet him where he is. Get in his reality. Fib if you must. I would not discuss hospice with him. It will only increase his anxiety. My DH used to say “we’ll get through this” and I said yes we will. He never knew what “this” was. 💜

CindyBum · February 17

Oh my dear. It is so much to handle, isn't it?

I second what SDaniel above says and will add this. I encourage you to turn and face the reality you are now in, even if it causes you the pain I know it causes. Here's why.

I ended up with a pretty great therapist. She lost her spouse to dementia after being his primary caregiver for years, so has a deeper understanding of what we're all going through. As I was telling her how far along I thought my DW was about 6 months ago, she asked me to consider what I didn't want to regret; what did I want to say or do for my DW before she passed.

It shifted my thinking entirely, that one comment. It made it easier to get into my DWs odd world and that made life easier for us both, even though our last year was also filled with horrible sundowners and DW unable to stop wandering. I hounded DWs friends and family to visit, because it felt to me like 2025 or 2026 would be our last years with her here. These visits were difficult to manage, but I'm so glad I put myself through that effort for my DW. I drove her to visit friends in her old home town. DW loved it.

I also told my DW all the things I knew I wanted to say to her — about about how much our life together meant to me, about how I was a better person because of her, how she deepened the loving relationships I have with my own family because of her, how I would always love her, and many other stories of our time together. I asked for her forgiveness for the times I was short with her or fought with her or hurt her. I told her I forgave her for times she hurt me.

I also cried like crazy, got help by hiring caregivers and used that time away to walk every day with the conscious goal of remembering myself, talking to myself about how I would prepare for either my DW's placement into an MC facility or her death and reminding myself that I wanted to live and be able to honor her joy and love of life.

Though this past year up until her passing was the hardest of all, it also held for me the most deeply tender moments with my DW and an incredible sense of gratitude for the love I got to feel and share back and for the beauty of this world. Somehow in middle of me thinking I was not going to be able to be a caregiver one second longer because I was losing my mind, I also had this incredible tether to the power of all that love. All from that one comment of a therapist.

Big hugs. Hang in there.

TrumpetSwan · February 17

Well, I am trying to figure out how to cope myself. The only thing I can say is maybe take it one day at a time and try not to carry everything all the time all at once.

When he looks into your eyes and talks about doing things you know will never be possible (I have been in that position too), just go along with it and agree with him and think of it being a cherished memory and having been fortunate to have done those things together. It is OK to just agree, smile, and let it go. Maybe it gives them peace to think of those activities they once did, and it is alright to let them have it.

Knowing the end of the journey may be near and witnessing their physical struggles is something I would not wish upon my worst enemy. There just are no words.

Maybe acceptance of the reality and realizing that this is so much larger than anything you (we) can control is helpful. I believe some of this is simply out of my hands regarding how the disease progresses. Maybe also somehow, somewhere finding gratitude in having had the relationship and the love you experienced and remaining connected to you own inner self are good things.

Thinking of you.

Bill_2001 · February 18

Hi Flowers,

We handle, we cope, we survive.

No holds barred - it is a nightmare, plain and simple. There are very few situations that test a person like watching a loved one deteriorate over the course of years.

I read your post and felt your pain. I long for the days I could have any meaningful conversation with my dear wife, even one where everything she was saying was incorrect or impossible. The flame of conversation with my wife burned out years ago.

No matter where each of us is on this journey, today is the hardest day. Today is worse than yesterday. Today our loved one lost a memory or an ability. Tomorrow will be worse than today. No one understands; medical staff, family, friends, no one.

To answer your question, "How do I handle such deep sorrow?" I really do not handle it. I refuse to handle it or cope with it, because that would cause pain I cannot endure. Instead, I distract myself and my dear wife. Deep sorrow is grief, and grief is the price we pay for love.

My distractions include movies, music, practical solutions to daily challenges with caregiving, conversations with friends, books, home repairs, yard work, housework, and keeping my dear wife happy, healthy, and safe.

I have not had a meaningful conversation with my wife in ten years. She has not used the restroom on her own in over six years. I spoon feed her now. She can still walk, but with assistance. My beautiful wife is in there somewhere, but she appears far different now. Dementia has ravaged her mind and body. So many other diseases get all the attention, while millions of people are dying from dementia, and their caregivers are dying of broken hearts.

Crying is ok, but I try not to allow it myself. The only times I allowed myself to cry, the pain was so intense that it physically hurt, and I was screaming and moaning in agony. The pain is there, but I cannot continue to take care of her while in that much pain. I do what many people (guys especially) do: I bury it and go on with today's tasks. I am postponing the pain as best I can.

Love, Bill_2001

Carl46 · February 18

Crying actually helps. Tears contain chemicals that make us feel better. It is good that you can do that, it helps you. As I am sure you know, alcohol etc. make things worse.

Hospice will help you, as well as offering extra care for your LO. I encourage you to take advantage of the services it offers, including the services of a chaplain both now and after he passes, and of any grief counseling that is offered.

As others have said above, communication with a person with a damaged brain requires that you enter into that person's reality. You can hold his hands and agree that you will walk together again; there is no need to say that it will not happen on Earth.

TanFin · February 18

https://alzconnected.org/discussion/75383/how-do-you-handle-such-deep-sorrow

I’m so sorry you are going through this. My 58yo DH was diagnosed a year ago w/ EOA. My heart goes out to you. Mine’s quickly moving into stage 6 already, and it’s so unfair to him. And yes, every illness is harder (if not impossible ) for them to navigate because of their inability to rationalize. I’ve found EOA to be a lonely, underrepresented road. I support you, and I’m sending hugs!

howhale · February 18

The stories we share and the responses offered are such heart wrenching descriptions of this horrible disease. I lost my dear wife six months ago but still find this site a place of comfort and help, this section and the section for those lost. If you have not lived in the life we are and have lived, I, like others have said, do not believe you can understand the true and complete impact. We have to learn to be a different person, behave in different ways, say things we never thought we would to our loved one, deal with experiences others cannot even imagine and still go on, and on, and on. All for the sake of love. If you can recognize those precious moments when your loved one responds, smiles, touches you, holds your hand, share a bit of food, cherish those moments. My wife no longer suffers from this nightmare disease but I cry every time I read through any of the threads on here. I cry partly because of my own experiences and what I lost, but also for each of you and what you are experiencing. We see you, we hear you, we care for you and we are here for you.

Call me Gram · February 18

This is kind of a side note… I am not a person who cries easily. In fact, I rarely ever cry about my own circumstances. I don't know why, but it has been that way all my life, even in childhood. However, as Carl46 mentioned above, I know that crying is very therapeutic - both emotionally and physically.

To compensate, every now and then I watch a tear-jerker movie to get the tears flowing. It provides the same feeling of relief that a good laugh can provide. So, if you're like me and you find it hard to cry, look for some good tear-jerker movies and let the flood gates open.

How do you handle such deep sorrow?

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