I spent some time yesterday thinking about "resentful." I believe "overwhelmed and angry" push us to "resentfulness." So the little vacations and spaces are SO necessary, even when hard to take. I too find it often easier to receive the gift of strangers or folks on the street, since family and friends close to our situation seem to mostly "play it down." Because our journey is so much slower and less shocking than they expected.

It has been such a gift for me to find you all, and learn how surrounded I am by others who understand.

Nouce

• Generosity, a willingness to give your time to others


• Understanding, because their lives might be very different from your own


• Empathy, an ability to put yourself in someone else's shoes and feel what they must feel                                        


• Compassion, to truly care about making someone else's life better


• Patience, because the process doesn't always go as smoothly as it might


• Dedication, to stick with the project and see it through

                                                                                               - unknown

With one recent exception, I have been absent from this forum for a long time having initiated the theme of this thread quite a while ago.  My life has become increasingly complicated in the intervening time.  My wife's illness has continued unabated affecting her cognitively, physically, and emotionally.  It will in time leave her completely incapacitated, and - in time - it will kill her one way or another.  Because of its genetic nature some of our children and grandchildren have inherited this illness as well and will suffer a similar fate barring any medical miracles.  For my adult children, time is running out.

There are mornings, every morning to be honest, when I can barely get out of bed, barely lift the weight of my weariness and grief enough to stand up to another day.  And it goes on, and on, and on each day, each and every long day, and for as far as I can see into the future. The weight of these illnesses, the heaviness of my responsibilities, the tedium and trauma, the frequent explosive, venomous, and abusive tantrums of my wife exhaust my spirit, my energies, my joy.

I write to confess to you, a sacred and blessedly anonymous circle, this exhaustion, and to broach a topic that, in my silence, in my sense of "propriety" (and fear), I have not addressed before because, in my experience at least, though acknowledged formally, it is rare that I am invited to discuss it personally.  (See how I have danced about it myself with that awkward introduction.)  Let me be less discrete though even now I feel somewhat hesitant to open this conversation as if I should be ashamed to feel this way, as if it reveals a profound weakness in my character:

I have benefitted and still do from the wonderfully astute and compassionate words of family and friends near and far.  I have benefitted from their meals and practical assistance that have often allowed me to survive another day.  What I am missing is (here comes the risky part) the comfort and sustenance of another's embrace.  I need that concrete, non-ethereal or clinical affection, that love, that solace, that intimacy.  It has been mising in my life for a dozen years or more now, and it can not be replaced by the finest words spoken by friend, or physician, poet, or saint.  I need to feel the affection of another, to be held by another, comforted by another, restored by another. The well does run dry (doesn't it?); the spirit does wither in the dryness of protracted, unrecipricol  service and love and attention (Doesn't it??).  Or am I the only one to have come to this point of loneliness and exhaustion and perhaps in the view of some -  weakness?  Isn't there a time when we the care givers need to be held too?

  I began this entry by calling it a confession. In keeping with that term (and my Irish Catholic heritage), I feel guilty to have written what I have.  I feel this confession marks me as a man of weakness. of self indulgence.  Nevertheless, I will press the "submit" button in hopes that it might be of some relief to others who might find themselves  in similar circumstances, in hopes that it might reduce the isolation of others who might be reluctant to express similar feelings.  Life is enormously complex, caring for someone physically and emotionally who is critically ill,  a partner who is disappearing daily from you, estraged in every respect, back turned towards you, facing the other way, fading away, fading away day after day after day is exhaustiing, depleting - in every respect.  There is no part of your being that remains unaffected.

Enough, it is morning, the street has grown busy with traffic. The early morning darkness that propelled this profane confession has gone.  The tasks of the day press upon me, demanding my attention and energy.  I send this out, with considerable nervousness, because I need to do so for my own sake - to at least make my confession - and also for the sake of others who might have similar feelings - to let them know they are not alone.

With respect -

Jimmie

Dear Jimmie,

How interesting that you would bring up this topic. I was talking to a friend who lost her husband some years ago and I was asking her how she dealt with the loneilness. My husband has a terminal illness, and 5 years ago we were told it wuld be months, well, it has turned in to a slow deterioration. Sometimes I wish there were someone who could just hold me and tell me everything was all right and not to worry. It has been years since I have really had anyone to lean on. Yes I have friends and family, but at the end of the day it is only me to carry on and hold it all to gether and to feel the loneliness. I do understand and it isn't a weakness to express your needs. But no I don't have an answer. But you are definitely not alone with your feelings.

Jimmie

You have touched upon, no addressed in blinding honesty something that all caregivers struggle with the sense of comfort and compassion in the form of others being there in the first person. I am working on a podcast about this topic from the perspective of adapting to being a caregiver and the loss and not just loss of another but loss of comfort care and touch. In part here is what I will be addressing. I question if we ever adapt or close but come to terms to help us be better caregivers and carrying those memories. 

One of my HCP said to me about year or so ago “You’ve adapted well to your loss” Gee I was proud a professional in neuroscience and psychology noted I’ve adapted it must be true. My error was drinking her kool aid and not looking within to see my reality. In perfectly clear 20/20 hindsight she was just making herself feel better that she had achieved an outcome she could live with. And to be truly cynical she knew I was malleable enough to buy her kool aid punch. 

Not sure I really adapted as much as have come to terms with my existence and the boundaries of my pain and fears. Is that adapting? Perhaps and I may be trying to thread a camels ass through a needle but there is a point here. Adapting and marking time are different. Many do not adapt many struggle day in and day out. Some of us less so and there are those who get married within six months of loosing a spouse. We all face and relate to death differently we all respond to grief differently. I’ve written about this before when hospice and palliative care teams are in place the incidence of complicated grief is lower for loved one when compared to patients who have not been part of hospice etc. Adapting may be related to the care the patient received and the loved one received. 

To a point I have adapted. I am doing less of what we did and more of what I do. No I don’t leave my socks on the floor or eat in the living room or not make meals.  I am striving to find my way not our way. But I have not adapted to the loss, the moments of sadness or filling my time with activities.Some days life is about routine to avoid being frozen in the amber of history. A friend is pushing me to avoid isolation, being alone is fine and I frankly enjoy being alone but, isolation is not healthy so I am doing more to fill the time. Making plans with neighbors and friends. Filling the void I’d say. That is not adaption. More like acceptance. It’s like closure which I don’t believe is valid that is denial said pretty. I will or may never adapt but I will accept my life and feelings. 

Not too long ago someone noted, that I am not ready to move on. mmmm move on. WTF does that mean? As if I am having a blast. Is moving on a step toward adaption?

I have been considering that and clearly I am ready to move on. But, let me repeat BUT I am not moving on just to move on for any reason. Moving on or adapting or whatever, is it finding someone to replace the loneliness do my wash cook etc. I can do all of that and more, it is about being challenged again being stimulated inspired. And that is not necessarily someone it is something like these podcasts which getting up for these is becoming a challenge I need a podcast dysfunction product. It is creating meaning and purpose for me. And Jimmie you will find that as you look, think, consider and share. It is yours not anyone else's 

Grief is like a mix tape playing in the background. It is the sound track of your life. Some turn it off and find a new tape. Others listen to their tape and dance to it or sing or cry or let it play. No matter what it’s my mix tape our mixed tape and my choice and that is key, choose to do something with your grief and pain and hurt. Make something of it. Use it to power through … 

Dear Jimmie,

I have read and reread your post and I can just feel such a sincere deep longing for someone to embrace you and confirm that you are so perfectly normal. You have just shared so honestly from the depth of your soul. Not too many men are able or prepared to do what you did. I also read your response to Carl on Dec. 09/2012 and I was so impressed again with your honesty and deep feelings for another person. I see nothing but a solid character and no sign of weakness anywhere. It is probably just the fact that you have to keep giving and giving as a caregiver, father, and grand-father. Like you say, eventually the well runs dry and doubts about yourself are magnified.  I would like to have had a word of encouragement for you, but as you said, words no longer comfort you. All I can do is pray that you will have the strength to take one day at a time. Your family is so fortunate to have you at this time, especially your dear wife.

Blessings,

Brayden