Endless Grief

RobertsBrown

It's been over ten years since our first Neurologist examination showed the dying areas of my wife's brain.  In the early stages we both grieved our loss.  She would fixate on music about loss or fear of loss.  We grieved together.

For the last few years she has lost any insight, and mostly I grieve alone.

What is so hard for people to understand is that I am not a sad character that just sits staring a the walls grieving.  I have an over-full life that includes a lot of caregiver work, housework, professional work, farm work, and actual fun too. There are horses to tend, dogs to yell at, cats to pet, birds to watch. Sometimes I look up and realize I live in paradise. Grief is not my constant state, but.....

It absolutely will not f*ing stop or fade away.  It comes unexpected and uninvited, sometimes overwhelmingly so.  It wrings me out, then it passes.

Ten years of grief is a lot.  I suppose I can look forward to at least that many more, and I have to wonder what that is doing to my personality, my neural chemistry, and my general nature.

This is the thing that friends and family do not get.  It does not get any easier, or less intense, or fade away.  It has become familiar, though.

I suppose this is just stating the obvious to all of you.  I just had to write it out.

M1

I get it RB.  My partner was diagnosed with a stage IV lymphoma in 2011.  We had no idea how long she might have.  I left practice in the spring of 2012 and spent two and a half years not working, living on savings to have time with her; during that time is when dementia started to show up, but we had a marvelous interval when she was still pretty functional.  So yes, it's been ten years here too of that constant worry in the background, not knowing when the other shoe would drop.  Now she's forgotten that she even has the lymphoma (we've been lucky there to have ten years).  

Not trying to be Pollyanna but I think we'll be okay, ultimately.  The grief is very hard, and all experiences shape us.  But like you, I live in a little corner of paradise and there is much in the natural world to keep me grounded.

DrinaJGB

You are so right that friends and family do not get it. I have stopped trying to even talk much about it at all to people because it only leaves me feeling hollowed out and more disconnected from them.

After over 12 years of this state I have had to resort to self preservation and sanity checks periodically. I miss him, but he is still here. Not in the way we were for over 3 decades, but different. I try to see the positives, but out of the blue that wave of grief over what has really been lost comes crashing into me and knocks me down.

I recently bought a turntable so we could listen to old albums we used to always listen to. DH will sit with me and listen to Joni or Neal or Steely Dan---and comment on the lines in the song such as "that's so true", etc. It connects us again in a rather profound way.

  DH is not as severe as so many others here, and for that I am grateful, but nevertheless it is still a crushing loss when I realize his brilliance has diminished.His journey on this road started with an acute and very near fatal brain injury, and is now diagnosed with mild mixed dementia for several years now without much change at all, and in some categories improvements---so it is confusing at best.

I get a lot of comfort in my dogs and in nature as well as listening to music. That's about as good as it gets, but I am by nature an introverted intuitive, so it doesn't bother me in the least to distance myself from the shallowness and judgements of others.I know that for these dozen years I have done the every best I could do and am at peace with that---as you should also be.

  I wish you peace.

Faith,Hope,Love

I think a lot of us can relate to your post RB.  It seems like the grief, worry, despair and all the things that go with dementia are constantly hanging over my head.  Even on good days, I can still feel it there waiting to find a way to get my attention.  I sometimes feel like I'm on a roller coaster ride with it.  I do try to stay busy and keep our house as happy and cheerful as possible.  That seems to keep it in the distance for me.  But sometimes when I least expect it, it comes into the forefront of my mind.  Then, I have to work to get my equilibrium back.  I guess all we can do is the best we can do in this situation.

Lynne D

Hi RB,

Thanks for this post, to which so many of us can relate. I see that you are not going to be one of the caregivers that statistically passes before their charge or smartly, thereafter. I admire the grace and spirit with which you are handling this situation. The gift of a sense of purpose in caregiving is often overlooked. 

My HWD (stage 6) and I enjoyed a beautiful evening in the deck listening to the crickets in a soft breeze and watched a silvery gibbous moon rise. His limitations slow me down and cause me to savor the moments like that. 

Mint

Drina when I read your statement regarding feeling hollowed out and disconnected I realized that is exactly how I feel after attempting to talk to others.  Could not be described better.  Thank you for sharing that here.

Ernie123

One of the benefits of this forum for me is reading the wise words of others who can express what I feel more coherently than I can. It is strangely reassuring to hear from others who also deal with the unpredictable waves of grief that sometimes are overwhelming. Some days I am able to immerse myself in tasks and feel a period of calm and dare I say brief moments of happiness. Sometimes I can think about my DW and her progressive issues in an objective clinical way and not feel upset. I can calmly discuss her care with the nurses and PSWs. Other times a random reminder of her fills my eyes with tears and I feel so very alone in my grief that I wish would fade. 

I guess we must learn to live with these moments and accept them as a normal part of ambiguous loss and grief. I am now in my third year of living alone, DW is in advanced stage living in LTC. I had hoped once she moved to care I would adjust to a new life alone within a year or two. But it isn’t happening. I still feel I have a hole inside me most days.

I thank you all for sharing your thoughts and I wish you well on your personal journey.

piozam13

Do not despair.  When I was caring for my husband, I turned to this group for information and comfort. That's why Iwas able to anticipate what was coming.  I and others can relate to your posts.  Take care.  Do not hesitate to reach out. We are here for you.

jfkoc

The term ambiguous loss has been used several times on reccent posts recently. I looked it up. It did not make much sense to me. I think we have a pretty good idea of just what we are losing.

Loss is loss,yes? I, like everyone here, lost my husband in increments. Mostly what I felt was a "stew" of frustration, anger, overwhelment (a word?) and sadness. 

Grief did not appear until the day my husband died. It slammed me to the floor. It kept me there for some time. Then I began to stand up for increasingly longer periods of time. It was, however, at the ready to slam me again whenever/wherever it wished to....no particular rhyme or reason.

I do not believe that grief can be controled but today it is relatively content to walk by my side as a silent companion giving me a nudge now and then just so I know it is with me. 

That nudge reminds me of the myried of things I lost when my husband died. It fills me with a sense of emptiness and always with the great sorrow that my husband's life is over. No more jet trails.

rlpete

Robertsbrown and everyone who has posted here, 

This is why I come here. I'm not the best writer and organizer. People here can sometimes help me put my thoughts and feelings into something I can better understand. I understand the endless grief but I won't let it consume me but it is always there. 

My wife is able to do more than many here. She still wants to do things and for that I am so grateful. Of course, doing something is always more work for me than just sitting and doing nothing but I don't care. We will do it. We will continue to live as best we can. She wants to go to a restaurant, we will. I don't care if we are slow getting to the table and she struggles sitting down in the chair. I don't care if I sometimes help her eat something a little difficult. She deserves that enjoyment. 

I don't know how the grief will hit as she progresses. I'll probably be more angry than grief stricken. I hope I'm able to keep it at bay and enjoy the life we have. There are still moments to enjoy. My Dad did the same with my Mom and I will do the best I can.      

Just Bill

This is far and away the most intense emotional experience I have ever had to endure but the emotion that I carry around all day every day is profound sadness. I workout, meditate, eat right, do all the right things to feel good for a while but that sadness is always following me around. I live in the moment as much as possible and savor as much happiness and joy that I can get from this wonderful gift of life so the sadness doesn't overtake me, but it always there.

Norm 22

It is endless grief.  DW has been in memory care for almost 4 months.  Lately she wants me to take her home, she is somewhere in late stage 6.  The grief is intense and all consuming.  Married 43 years, met in high school.  She is a different person now. I'm just a mess.

pennyloafer2

HI Robert,

Your post was beautifully worded. I have been riding the grief wave for over 10 years.

It's the constant silence that is the hardest. My husband has Parkinson's/Lewy Body. We had to replace our roof a few years back. I was sitting outside listening to all the hammering, radio playing, guys talking and it dawned on me how really silent my life is. This year alone my husband has gotten so I'll I really thought he was going to die. It's like constant PTSD. Up and down up and down... I feel angry most of the time. I have no help. No family. Who will take care of us when we get I'll? We will be all alone in our silence.

pennyloafer2

I loved your response Drina! Very heartfelt. And you described it to a tee.

I always loved Steely Dan. And who didn't love Joni?

Music takes me to a really nice peaceful place.

Crushed

In  September 2010 DW  was 58 years old and a brilliant vibrant physician who held the top position in her field in her agency. We had both worked very hard all our lives .   We were planning and had saved for a golden retirement. Our younger daughter was getting married in October and we looked forward to grandchildren and travel and life together.     

Then she failed the clock drawing test and it all came crashing down. I spent the next 7 years caring for her as she declined.  In 2017 she entered memory care and she is still there.  She is 70 and a blank voiceless uncomprehending shell of her former self
 
12 years of pain is a lot.   My mother had dementia so my siblings get it and are very supportive. I have a good therapist.  I don't have depression.   My children are wonderful.  I can pay for her care.  I can date if I feel like it with total family support.  She has the best of care even if I am not there   

But I feel the pain and loss every single day
 
I even want to scream at the people who had normal lives in their 60s
Yes I know its not their fault, its the luck of the draw 
 I even know people who had it worse and younger
 
Thanks for being here 

 

Jeff86

This is the thing that friends and family do not get.  It does not get any easier, or less intense, or fade away.  It has become familiar, though.

That’s it, precisely.  Every single day, without fail, I grieve as I help my DW and see how ‘gone’ she is.  Yes, it’s familiar, but it never stops hurting.  Intensely.

Annen1014

I grieved for my mother for years and it was only her death that allowed me to start remembering the person she had been for most of my life. I grieve a bit for my DH every day and I know it will only get worse as the disease progresses. We understand.

Annen1014

Lynne D thank you for that posy

Jella417

My DH is only beginning the AD journey but I can already relate to the grief and how no one else really understands. Losing him slowly over the next decade or so is unimaginable to me. It’s so hard already.

Annen1014

I should add that one reason we get so little understanding is that we live in a grief denying, death denying society. In other places, people still prepare their LOs for burial. In the US , many adults have never seen a dead body. We are told after a loss, to move on with our lives. Yet  according to one psychologist I heard speaking years ago, a high percentage of mental illness comes from unresolved grief work. It's a process. And it's work. But, you are so right that it doesn't make you a gloomy person.. Grief is not pessimism. I grieve because like many people, my DH feared dementia more than anything else. And of course, now that is his disease that is causing his decline. We are in early stages and he is already 85, so I realize we won't have that much time left together

Paris20

I find that one of the hardest things to deal with is well-meaning friends and family asking how DH is doing. It sounds so innocuous but to me the question shows a lack of understanding of dementia…not their fault. I used to say DH was the same. Then he had a stroke. He is in awful shape. Now, if I’m asked how he’s doing, I reply that with AD and a stroke he will never get better and will never go home. That usually puts an end to further conversation.