It's ok to not be ok

Just Bill

When my wife first got this diagnosis I grieved and was profoundly sad. I started looking for ways to deal with it emotionally and found some activities that help me distract myself from the reality of whats happening. I know I am giving myself a feel good hit of endorphins every time I exercise or overcome a physical or mental task. The problem is she is slipping away mentally farther and faster than I have the ability to create enough endorphins to cover the onslaught of sadness coming at me. So, sometimes when I'm recovering from endorphin production I just have to get comfortable being profoundly sad. I am ok with it. It's ok to not be ok. I am actually wallowing in sadness. Meet my new friend sadness. He visits me every day. I say hello then goodbye with a hit of endorphins. Tomorrow is a brand new day and I will feel great, but right now it's ok to wallow in suck. I'm ok not being ok for right now.

ImMaggieMae

Bill, wallowing in sadness is not unusual for people in our situation. I think to an extent it gets to be a routine, just like all the caregiving we do for our loved ones. Helping with feeding, finding foods that they can and will eat, doing a lot more laundry than ever before, and keeping cleaning and care supplies on hand. When things make a change for the worse is when it gets really difficult and then we have to find a way to adapt again. Sometimes the isolation this disease brings is the worst.

michiganpat

Incredibly sad. I never really knew what it meant until now.

Jeff86

Good morning, heartache…sit down.

 Yes, it’s ok to be not ok.  It comes with the territory.

Crushed

I've been on this lonely road over 12 years. All I can say to anyone is do WHATEVER is necessary to keep yourself alive and functioning.  Prayer, exercise , sex with strangers, pole dancing , chess, gardening , video games , horses, dogs , cats, travel,  choir, volunteer work ANYTHING

I just bought a new refrigerator and spent an hour putting back of the magnet pictures of my children and grandchildren.  i looked at every one very carefully

  

 

  

Joydean

MagieMay  I totally agree with “ the isolation is the worst “ ! I finally accepted the fact I can’t do all the outside work, inside work and taking care of dh, so I have a lady come every two weeks to help with some cleaning. Sad when you are excited to see your house cleaner come in!

Ed1937

Bill, everyone says they want to be happy all the time. But they really don't. Who would want to be happy when their loved one dies? Who would want to be happy when we hear of school shootings? Who would want to be happy about countless other things? We watch our loved ones fade away little by little, and you're right. It's ok to not be ok.

Beachfan

I recall vividly the incredible sadness at the beginning; waking each morning with that nagging emptiness in the pit of my stomach, dreading the start of each day.  But I refused to wallow; I am in the Crushed camp. For a long time I tried to capitalize on DH’s waning abilities; taking him places and doing things until I couldn’t anymore.  After almost 12 years, I surrendered and placed DH in a MCF in November.  I love him with all my heart and I miss what we had and will never have again, but I am not sad.  I indulge the kids, the grandkids, volunteer, wander the library and shops, go where I want to go when I want to go, enjoy my life.  

It’s not the load that breaks you down. It’s the way you carry it.  C.S.Lewis

Paris20

The only warning I’d give is whatever is not self-destructive and works is OK. When I was taking care of my husband by myself…and the house, and the finances, and the dog, I was becoming overwhelmed as my husband’s symptoms worsened. My afternoon glass of wine became two, then three, then four. I was escaping temporarily. I was aware of why I was doing this but I wasn’t prepared for what alcohol could do to my pre-existing medical problems. 

I stopped all the wine, got counseling and help caring for my husband, and took the advice of my PCP to take an antidepressant. I gained control of my life, which caregivers sometimes ignore. Now all I have to do is cut out all that ice cream at night. 

Buggsroo

This resonates with me in many ways. I feel sadness overcome me and start remembering the times we both laughed together and had fun. I sit and let the sadness wash over me, then when it abates, I get on with whatever I was doing. Sometimes I cry, other times just sit staring at a wall. Being happy all the time is a myth, but now I experience a myriad bunch of emotions.

MaryG123

I can relate Bill.  Thank you for describing it so clearly.  My anger toward my husband has been replaced by a profound sadness, more appropriate but oh so painful.  Yesterday I cleaned the house while listening to music and crying.

mrahope

It's not for everyone, but if you feel like it would help you, I have found talking to a counselor to be helpful for me.  I also love participating in a musical group, or just hearing good music.  It somehow speaks to me in a way that words cannot.

FWIW, one of the things that my counselor said to me is: "Sometimes you just have to sit with the sadness."  I have found that to be true.   I gave myself permission to "just sit" sometimes.  No one is a crusader or superman/woman everyday.

KathyF1

I’m finding the sadness is yes, inescapable. And yes it’s a lonely road.  I think it’s important to try to find joy somewhere. For me if I can steal a ride on my favorite horse, it’s a huge mood booster. But nothing makes life “normal”.

storycrafter

I really relate to this. I've come to realize grief is an essential life-skill. My life's work has become...how to grieve well. The more familiar and more skillful I become at grieving, or mourning, the better. It's not easy, but it's how human beings heal. Without it we would not heal and continue moving. The art of grieving is a life requirement.

CStrope

So many times people will ask me if I'm depressed, and I always answer no I'm just sad.  I do think there's a difference.  There will be days when a small thing DH does or can't do will just make me sad. I'll sit and have a good cry, then carry on.  I think, at least for me, it's important to allow myself to recognize that I can be sad, I can cry, and I can go on another day.

saltom

Reading the forum posts (happy, funny and excruciatingly sad) has become a main connection to the current reality and an emotional stability for me. Thank you all for your soul baring comments.

Michael Ellenbogen

YYou folksbring tears to my eyes and I truly  hope things will become better for you.

Stuck in the middle

CStrope wrote:

So many times people will ask me if I'm depressed, and I always answer no I'm just sad.  I do think there's a difference.  There will be days when a small thing DH does or can't do will just make me sad. I'll sit and have a good cry, then carry on.  I think, at least for me, it's important to allow myself to recognize that I can be sad, I can cry, and I can go on another day.

I agree.  Sad is when the sky is grey and you don't like it.  Depressed is when the sky is blue but it looks grey to you.

Antidepressants let me see the blue sky.  They don't turn grey skies blue.