First Waking Thought
My first waking thought nearly every morning is “Oh no! Another day”!
I know I am depressed. I am a high functioning depressive right now. I do everything I need to do in our daily lives and take care of DH in all the ways he needs me. I am not perfect but I am here learning and adapting. Meanwhile, I am trying everything to relieve this soul stealing sadness. Those tools include —talk therapy, yoga, exercise, deep breathing, journaling, seeking support on this forum but NOTHING HELPS. I do not use medication because meds no longer work, which is not uncommon for those who have had multiple, long lasting episodes. I have had multiple depressive episodes in the past and knew I would eventually overcome and feel better. The tools would work.
But this is different—-I know our circumstances will likely get worse not better. I ask myself is it even possible to recover emotional balance when that is a logical, reasonable assumption that leaves you in sadness?
I am not seeking advice with this post. But does this resonate with others?
Comments
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Yes
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It resonates with me. I find myself caring less and less about the things I used to enjoy and forcing myself daily to do the things that continue the illusion of normal life. I know it's going to get worse and I don't know if I'll have the strength to deal with it.
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Yes, it resonates. But I can tell you this: circumstances change unexpectedly and sometimes quickly. I certainly didn’t think I’d be in stage 8 two months ago.
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It's the same way with me
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Your post is exactly how I feel and how I get through my daily tasks. Some days are better than others, but mornings always feel the same. Today I am sitting at the beach, watching the surf under blue skies and sunshine. It’s peaceful and been too long since I took the time to just enjoy the sounds. Thank you for your post.
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Yes. It sure does.
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Absolutely resonates with me. No meds for me either after being a zombie on them for 26 years.
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I get it. Sleep is such a welcome respite (when we're not up all night wandering). I can never look forward to the day ahead. Part of that is not knowing what obstacles I will face with hubby today. Everything can change in an instant. There's no more "making plans" just reacting to whatever occurs.
I can't continue this way but struggle to get his acceptance of help.
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Hi WIGO23,
I absolutely understand your post here.
What many of us caregivers have is "situational depression." My doctor tried giving me antidepressants for a short while, but they made me feel worse. Rather than try more drug therapies, I opted to stop them. I equated them to "trying to stop the pain of an elephant standing on my foot." The only solution is to get the d*mn elephant to go away.
The elephant, of course, is caregiving for a spouse with dementia. The drudgery never ends. The love only goes one way. Friends and family go on with their lives. Months, seasons, years pass with no more meaning anymore. Outings are limited to the doctor's office, grocery store, pharmacy, and other mundane errands. There is nothing to look forward to.
YOU ARE NOT ALONE.
Do not give up. Try to find something (small) every day that gives you joy. Play music, binge watch a Netflix series, then do it all over again. Call a friend. De-clutter the house. Find a hobby, even if it is only the armchair variety. Just because we cannot visit all of the national parks now does not mean we cannot watch YouTube travel videos in glorious 4K. Make a big deal out of it as if you are really going.
All we can hope for is that we outlive the demon of dementia. Placement helps with the freedom aspect, but the heartache and ambiguous grief will remain until our loved one has passed.
MILLIONS OF US SUFFER IN SILENCE.
For every gray-haired tourist visiting a national park, there is one (like us) shut-in at home caring for a loved one.
Love Bill_2001
23 -
Bill does a great job communicating the life of a caregiver. ('The cavalry is not coming,' etc.) Hang in there WIGO23
5 -
You nailed it Bill. Yes I can so relate to the feeling that there is nothing to look forward to. But I try to call old friends, the connection I get from close friendships is medicine for the soul. Hobby- great idea. I am trying to learn watercolor. Exercise when I can. My horses are therapy, even if riding is not possible right now. And prayer, asking God to help me in this journey. And anti depressants actually do help me. One day at a time.
6 -
yes it does. I’m in Stage 8 and still struggle with those feelings. This is a terrible disease that robs us of so much.
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I feel the same way. Swimming keeps me sane, but with the cold weather I'm finding it hard to get to the Y. It's going to be a hard Winter.
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I hear you loud and clear. You are not alone.
I think I have existential depression, something not helped by traditional anti-depressants. Docs have offered anti-depressants and I have tried several of them but for me they don't work on this type of psychic pain. So I stopped.
My goal is to survive these care-taking years with my health and psyche intact.
So I have tried different things to help me thrive under these circumstances. I tried a daily yoga practice and got thru 9 months but now do it occasionally. I got bored. HAHAHA. I have hand weights and a jump rope that stare at me daily. I have de-cluttered the house - Swedish Death Cleaning works! I call friends and have them come for coffee and chats. We still get out for lunch sometimes and to walk the dog. I cook a bit and use lots of Amy's frozen entrees with added fresh vegetables when I just can't face the kitchen. I have a zoom support group and attend therapy sessions online. I cry in private. I write in a journal about my thoughts, feelings and events - it is cathartic. We watch a lot of TV, Netflix, etc. I have all the stuff to take an online watercolor painting class.
Lately I have also started gardening in the back yard - it keeps me at home, within earshot of DH, and I get exercise and a beautiful back yard. I'm just starting this "gardening therapy" and am working on hard-scaping projects this winter season.
None of this is easy. It's an unimaginable life. But you all give me hope and strength to carry on.
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Anna; your Post is motivating, enlightening and comforting. You have done wonders under difficult circumstances on multiple levels.
I would love to see your backyard, I can imagine it is flourishing beautifully under your caring hands.
J.
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Thank you, @Jo C. I'll post a picture soon - right now it's a mess in progress!
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your situation resonates with so many. Thanks for sharing
1 -
There is a T shirt that says "I retired, so now I work for my wife." It is meant to be funny, but it isn't if you have a job that has you on duty 24/7/365. Worst job I ever had, and I have had some real stinkers. Doesn't pay very well, either.
A psychologist once told me "No human being should have to work all the time."
7 -
Sounds like I need this shirt but I work for my husband now. Today, I just had the overwhelming thought that I was an underpaid maid. At least you still have a sense of humor. Mine is leaving me with each passing day, along with my sanity.
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This post hit the spot for me today. Although I’m so sorry we’re all dealing with this, I needed to read again that I’m not alone with what’s happening. It’s been an extra rough few days here with DH, and I feel like I’m at my wits end. Reading your thoughts, advice and caring comments was a huge bolster for me. I will now hit the reset button on my feelings. Again. Thank you all!
4 -
Yes - I understand completely. I reached the lowest of lows just a few months ago. I decided at that point I needed to save myself. I decided to get help caring for my wife so that I could get some time for myself. I also decided to seek out someone who could provide companionship that my wife can no longer provide. I am now in a much better place mentally. I find I have more energy and patience to take care of my wife, and I have hope again.
5 -
Oh, yes, it resonates. When your first emotion upon awakening each morning is sadness and your next one is dread, you question your ability to last until the end. I'm unsure that if I do survive there will be any thing left of me capable of finding enjoyment. This disease destroys the memory of one and the spirit of the other. It is a wretched, wicked disease for sure. I am so sorry so many of us are in this battle but it helps to know I am not alone.
4 -
It definitely resonates. If only there could be a good outcome to this disease. I fight constantly to try and not be sad, but it’s a challenge. My son-in-law passed away in June so my daughter, who was my support, now needs more support than me. My DH has been referred to an Oncologist for possible multiple myeloma. We are testing blood every 4 months since the bone marrow biopsy didn’t harvest enough marrow and my DH refuses to have another one because of the pain. He also says if it’s cancer he is not going to have treatments again. (He survived stage 4 colon cancer metastasized to 7 lymph nodes and liver in 2003). Our instinct is to do everything possible for survival, but his prognosis is dying from dementia. So I battle the guilt of thinking blood cancer would be quicker. Yet, with all of this my faith still allows me to count my blessings for each moment I have left with him. It’s a tough disease….peace to us all.
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Regarding not getting treatment for the myeloma…I can understand the guilt but I like to think it’s more compassionate in the long run. Someone once responded to my post on a medical intervention that hit me…something to the effect of “Would you really want to perform that procedure so your DH can experience a longer stage 6 & 7?”
5 -
Yes, this absolutely resonates with me.
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I can relate completely. Most days, after being verbally bludgeoned for several hours, I don't even want to be here anymore. If I didn't have a little dog who loves and depends on me, I wouldn't care to continue this life for much longer.
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As the originator of this thread discussion, I want to thank everyone that validated my feelings and shared their own. Just articulating my truth, having others acknowledge it while contributing their own truth does make me feel less desperate and hopeless.
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Thank you for your kind thoughts. I’m new to this rapidly changing dementia of my DH and somehow we manage to still get busy with activities each day: it can be an art class (he loves to paint), going to a concert, watching a movie, reading for our book club, or binge watching old classic tv series (we just finished Sea Hunt and doing Columbo now). I try to avoid regular tv shows because the commercials upsets him.
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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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