Just Sad
I think this is the saddest and lowest I have felt for a while. It has just struck me how quiet it is in the house if I’m not talking or prattling on or the radio isn’t turned on. My darling DH with Aphasia, VD, now bent over most of the time and creeping silently around the house, it’s quite awful. I’m getting tired, the weather is getting hot, 35c tomorrow; if I can’t think of anything to do or anywhere to go I feel trapped in the house. It will change I know and I have so much to be thankful for but I’m tired of the silence and no meaningful conversation. We should have been at Sailability today but it was cancelled due to technical problems. We are going sailing tomorrow on a friends Elliott 40’. Her husband is non verbal, quadriplegic in a wheelchair. She has been working for weeks to prepare for this I have been trying to help. She is out of her comfort zone skippering but knows it’s up to her. I am looking forward to this but my DH is kind of unaware and it’s hard work. I want to take him just hope I don’t get too much pushback. I just want to cry does that sound indulgently pathetic, that’s how I feel. Please don’t tell me what to do I am so glad I have somewhere I can let it all out.
Comments
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We all need to let it out. Then we come about and push off to set sail again. Hugs and love to you.
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You are safe here to share your feelings and frustrations. What you feel is "What You Feel". It can be unlike what anyone else feels so it may be unique, but that is true for each of us. And yet, we are all part of the same "family" each feeling their own way. You established your position when you refer to your spouse as "your darling DH". Let that feeling guide each step forward together, only your heart knows the truth for you and your spouse.
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Thank you for your kind and understanding words. It’s awful when you feel so low.
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I hear you. My deep sadness never goes away. I have moments of feeling maybe a quarter normal (not half) or maybe even a few hours on a good day. But every single day I wake up I think, “Oh no, another day to get through”. The silence in our house is deafening. The emptiness is profound. The struggle to do anything other than what is absolutely necessary is challenging. I hear you.
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You always manage to put into words how I often feel. I hope you are out sailing today and enjoying the feel of the water under your feet. There’s nothing like it.
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I also get up every morning dreading the day and wondering how I'll just make it through the day. My prayer is "Lord just help me get through this day." I never know what I'll find or what I'll have to face. I have what I call "waves of gloom." It happened today for some reason. All of a sudden, I'll feel the wave of gloom hit me and I'll get profoundly sad, and I feel paralyzed with the weight of things that need to be done. So I absolutely know how you feel.
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Big, big hug.
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Same here, waves of gloom and profoundly sad. I have this sadness that always seems to be on the back burner as I put on my happy face for my DH. I don’t want him to see me sad so I hide it from him as I try to make each day the best day ever. I dearly miss our conversations together. Getting his opinion on things and experience. I miss my DH and hate what this disease has done to him and our marriage.
3 -
So glad to here I'm not the only one that feels that way. No more pleasant chats over coffee in the morning . Just quiet or him telling me something I did wrong or I need to do.
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This was one of my down days, so I guess misery loves company - and you all are the best company to have because you understand completely. You also express your thoughts and feelings so well that I could just copy/paste. 😁
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yes we understand. Love & hugs. 💜
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I don't often share my poems outside my immediate family because I use poems as a way of opening up my feelings. I have done this for years for my dear wife and other family members but today, after reading so many of your posts about the silence that follows the loss I am taking the risk to share one poem. Forgive me for the length, I sometimes just write until I have, for that moment, purged the feelings.
The Silence Is Deafening
She has left us now and the home is quiet and still
Our early mornings and afternoon evenings alone time gone
No matter that sometimes few words between us were spoken
She was there beside me, her presence, her smile, her hand in mine.
Her pain and suffering at last gone, but my heart broken
They say time will heal but, for now, I do not believe
The pain is so great, far worse than physical ever could be
I will bear it forever until the end, I will never forget
Her picture and memory grace every room and space
I stare so often hoping for just one more smile, one more word
The noises I now so often hear in the quiet of the night
I wake looking, hoping to see her there, yet it is not to be
There is a hole in my heart, I feel it deeply now
It is real pain overwhelming as if a part is missing or hurt
I beg and cry for her return to fill it once again
Knowing full well it cannot be, but I still want one more day with her
I have so much yet to say to make sure she knows
She deserved so much more than I gave and I live with regret
For now the time has passed for me to atone
She is gone too soon, I am left with this hole in my heart
In our busy lives we often ask for “just a minute of peace and quiet”
Be wary of what we ask so cavalier in blissful ignorance
It may actually come and shatter your dreams and life
Peace and quiet no longer desired but rather now despised
As I now sit alone forever each and every evening in the quiet
And again lay alone in the dead of night till morning sun
I beg for her touch, her smile, her kiss, her sound
The silence is deafening, I never knew it could be so
Busy work so often I seek, I need to further distract
From the pain in my heart that does not stop,
The tears in my eyes that come in a moment and flow unchecked
Only her hand and smile and kiss can heal
It seemed such a hard task to provide her care
Little did I know how I would miss it, what a fool I was to see it so
The gap in my life, the hole in my heart, the real pain I feel
Never to be repaired, never to be healed
The message is now clear, alas for me too late
Do not begrudge the work and whatever life will demand
It is not significant, it is not a burden, they are precious times
It is but a moment with her which you will never recover
The silence is deafening, so very loud it hurts
It is not a silence that television or music or voices will hide
It becomes a plea because I want to hear her again
I do not want to miss a sign that she is still with me
The tears flow uncontrolled, the pain never ending, the wails of anguish unchecked
The pleading, the begging for just one more day, one more touch
I stare in her face, her eyes so bright, the picture is all I have left
For she is lost to me now, a gap impossible to replace.
September 4, 2025
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I hear you Biggles! Hope you guys were able to get out for the sail! Sending a big hug! ❤️🩹
1 -
sending hugs.
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it is so helpful to know others feel the way I do. Some days are okay to good but others I can hardly put one foot in front of the other. My LO was told this week he can’t drive. He is furious at everyone! We are entering a very difficult phase! Prayers keep me going. God is faithful!
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One of the things that made my sadness worse was when I would watch videos or read books about caregiving and they would say things like, "stay calm (frustration makes them worse), don't get mad at the patient (they don't know what they are doing), don't show sadness (it scares them), don't let them wander (for their safety), don't argue with them, don't reason with them (they can't reason any more), don't leave them alone (for their safety), ETC ETC
Made me feel like I was a terrible person because I got frustrated. 24 hours a day, 7 days a week is a LOT of time to act like a saint!
Our loss of a partner, watching the partner lose who they are (I cried more than I probably should have when my husband lost the ability to make a pot of coffee!), losing our own freedom……toward the end, I couldn't even go to the bathroom without him going out the door or some other problem)
everyone loses SO much but the medical community thinks the caregivers should never slip up. That is a heavy burden on top of the sadness we already have.
Hugs!! Being here on the discussion panels really DO help!5 -
“Made me feel like I was a terrible person because I got frustrated. 24 hours a day, 7 days a week is a LOT of time to act like a saint!”
Boy does this resonate! Newsflash—I am not a saint. I promised “in sickness and in health” but I never imagined that sickness would end up being the slow disappearance of the person I promised. 😒
6 -
What an incredible poem filled with brutally raw emotions. I could feel the heartache and anguish you describe. The love you feel for your wife is palpable and permeates every line. I felt guilty as I was reading it and reflecting on my own situation. I do long for some time alone but as you poignantly explained, I need to rethink that. Our time on earth is fleeting and I will be devastated when DH is gone. I do my best to make every day good for him but I need to have more patience and remind myself these are the best of the days we have left. Ty for posting your beautiful poem and giving all of us a reality check. I know your wife is in a better place and you will be with her again one day. Healing 🙏
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While I absolutely appreciate the reminders that frustration, reasoning or sadness can be unhelpful in caring with people with dementia, I finally let go of the idea that it's reasonable to expect that of a 24/7 caregiver. If you think about a 100% rate, it's simply ludicrous to imagine for most of us. I'm sure there are saints among us, but most of us are not. I am in the not category. I do my best and have decided it's absolutely ok to forgive myself immediately for having any of those reactions occasionally. Heck, my DW probably forgets about it before I do. When she doesn't, I just apologize again and off we go.
Case in point — I'm on hour 38 of hardly any sleep, constant jabbering and wandering and I'm about to lose my damn mind. You think I'm going to beat myself if I get a little frustrated after washing and changing the bed sheets twice in less that 24 hours, cooking all the meals, cleaning up after all of them but for breakfast this morning and having my wife trying to force me to do the dishes with her right now? I haven't shown her the frustration, but I can feel it poking at me right now as I just watched her put a carton of 1/2 & 1/2 in a drawer.
Please shoot for your best and forgive yourself as quickly as you can when you haven't reached sainthood today.
7 -
You are quite correct that our loved one forgets our slippage much more quickly and easily than we do but in those moments of solitude, rare they may be, it is not easy for one who truly loves to forget. The demands of being the 24/7 caregiver, even when you might have assistance for short periods, never ease up in our minds. Love trumps our ability to easily forget our transgression. Even now, approaching two months after her passing, those innocent and understandable failures in my behavior haunt me. In our home there was but one saint and she has now departed leaving me with my memories and regrets to cloud the happy ones. Understanding that our loved one moves past our failings quickly is what enables us to forge ahead in providing care until the time our care is no longer required. In my case, it is then that every weakness, every failure, every slippage pushes to the forefront of my memories. It is that which drives my, never to be fulfilled, prayer for just one more day to tell her I tried, I tried so hard, but I failed too often and I just want that second to know in my mind that she hears my apology one last time. I guess that would help my closure and, absent that, I will have to work harder to forgive myself and move forward. I thought the caregiving demands were the hardest thing I would ever have to experience but, again, I was wrong about this disease. It is what comes after, the grief, the silence, the loneliness, the pain in my heart, the tears that flow all too often, the missing her that overshadows the caregiving demands.
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Wow, this is so powerful. I grieve for my DH of old, and most days angry about the DH who is still here. I shamefully admit that there are moments while he is sleeping, that I listen for his breathing and am disappointed when I hear it. I dream and dread what life would be without him, yet I do know how to dream or plan for the present. I can’t make plans to go to a football game or a class or even a gathering without first securing care for my DH. My options are slim to none despite him having a large family. I’m trying hard to find the joyful moments and have no regrets. I am so glad you shared your poem.
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CindyBum, thank for your very honest comments. I am not in the saint category either. My HWD takes every moment of every day and is mean and nasty most of the time plus he has zero empathy left. Like everyone else here I have had to give up my friends and all of the activities that I love and enjoy. I have learned to just sit and endure his hours of verbal abuse each day even though I think "how dare you say those things to me". I have no help and am stuck with him 24/7 and am exhausted, depressed and over it. By the end of the day I can hardly bear it and sometimes lose it, which i instantly regret because it starts a lecture that could last for hours. Anyway…I don't feel as bad knowing that there are other 'non-saints' out there!
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Reading so many of these threads and how so many of us struggle and often have feelings of regret or sorrow in our behavior makes me think that I am among angels and saints on the forum. Anyone who sacrifices all of their life to care for a loved one with this horrible disease in all it's ugly forms has to be among the angels and saints walking on this earth. Maybe saints and angels do make mistakes, never met one outside this life so I don't really know. Maybe I will get to find out someday if I behave myself but I will not be surprised to learn then that those angels and saints also make mistakes. For now, I believe that I live and walk among the closest thing on this earth ever to saints and angels within this forum.
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Isn't it strange that for a caregiver the first thought in the morning is our LO. And the last thought at night. Not what you are going to do.
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That wave of gloom is so apt I too suffer badly from this and then my wave of gloom turns into a sea of tears.
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Oh how I relate to all you have said.
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howhale you have captured the essence of time and love and the destruction by this awful disease beautifully thank you so much for sharing. My eyes welled with tears and my heart felt your loss. I use poetry in the same manner and never so much as when I was so very down after the move from our home of 30 years to be near our daughter but to a place we didn’t want to be 3 years ago. I think I felt the profound loss of our home compounded with the ambiguous loss of my DH of 50 odd years was almost unbearable. It seems I can only write when I am on an extreme emotional journey and I don’t share either it’s so personal but I am so glad you shared.
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Oh dear trottingalong we haven’t been sailing last week my DH dug his heels in and refused to go. Who knows why of course he couldn’t say why just “no I’m not going”. We will try again this week fingers crossed but I have a ‘plan B’ I have put in for a Carer for 2 hours a week, hopefully this will work my DH can come if he wants to but at least I can be involved with sailing and socialise for 2 hours a week, this is my respite. This wonderful plan revolves around getting the carer in place could take longer than expected.
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I think it very normal to feel very sad at times. Our job as caretaker is not an easy one. As the saying goes..."it is ok not to be ok." We allow ourselves the time (if we can) to mourn these early losses. Then we get back up and begin again. Sending a supportive hug!
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Thank you for writing this Cindy- we do the best we can, somewhere in all of this we matter too …
0
Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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