Loss of executive function? Is this how it starts?
I know I'm being paranoid, but my avoidance levels are so high and my motivation so low, i begin to wonder if this is the beginning of losses that I won't ever recoup. I don't think I'm depressed, but maybe I'm fooling myself. or maybe this is just aging, maybe it's just stress. Maybe it's okay and my eyes are just bigger than my stomach, so to speak.
I get up in the morning, drink coffee, walk on my treadmill, go to memory care, come home. That's it. Just got home today, its 230, lovely outside, and there's a million chores that need doing. I just want to hide, read, watch tv, play sudoku on my phone. And the more the chores pile up, the more daunting it all seems. it doesn't feel like it's ever going to change, and I can't imagine having energy to bounce back. It feels like something fundamental is lost that I won't ever get back. I know nothing but time will tell. But it makes me wonder if this is how dementia sets in, when I just can't make myself do it any more.
Comments
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It’s called grief and exhaustion. You will come back from it, but probably not all the way physically, emotionally or mentally. Your mind and body are working together to get you the rest you need.
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I think seeing it(dementia) every day and having it so much on our mind make us question (is it dementia?) when others wouldn’t. My memory is terrible, dementia is always in the back of my mind when I forget something. You have been through so much and have had to be strong. Could it be that things are catching up with you. By things I mean the overwhelming stress and and mental exhaustion of always being there for your LO. What you feel like you have lost may be the life you had before dementia and of course your DW. Maybe a change of routine would help. Revisit an old hobby or cut back on your visits. It sounds like you have been a very devoted husband. Maybe it’s time to focus a bit more on you. Find something fun or interesting to do. I hope you can find something to help you move forward and find peace.
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M1, I feel like you and I are in a similar situation (though you've definitely been dealing with this longer). I don't think it's depression per se. I think QBC hit the nail on the head: grief and exhaustion. When my husband's aide is here, I would often hide in my room (reading, doing the daily wordle, napping). I finally had help but felt like I was squandering it. I asked his hospice sw for a therapist recommendation. I see her every few weeks and it helps to talk through my grief. I force myself to go out. And I mean "force myself." I dragged myself to a bookclub. I spent time at our community clubhouse. I invited a neighbor in for coffee. Between the covid isolation, moving to a new state, and dealing with my husband's diagnosis and progression, he had become my whole world. I needed to reach out to other people and start living my own life. It's gotten easier and I've even made a couple of friends. I've started volunteering with AFTD and am being trained to be a part of their provider outreach program. It's getting better.
And somedays I let myself be a hermit. The grief comes in waves and I know the next big wave is going to be brutal. Be gentle with yourself. But sometimes give yourself a little tough love and force yourself to live.
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M1,
Our nervous systems take on a lot. Sometimes they kinda take over for us. My counselor has been talking with me about healing from what I call fried nerves. I know it may not be everyone's thing, but in case it resonates with you I thought I'd mention it here. You have helped so many and many would love to return the care and concern and support. Anyway... she's been teaching me about freeze state and vagus nerve. Sometimes she has me hold an ice pack on my chest - that sort if thing. I'll pay attention to the other ideas to share too.
Wishing you well. jen
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Grief affects far more that just the emotions, it is a physical experience. The below link contains an infographic on some of the mental and physical manifestations of grief. Stress and exhaustion just make it worse.
https://refugeingrief.com/articles/am-i-normal
I was in the same spot as you are a couple of months ago. Driving 45 minutes each way to see DH daily. Spending hours with DH. Fighting the facility to see that he got the care that he needs. Eating, drinking, dreaming, thinking, and living dementia all day and all night, every day with no end in sight. I was having many symptoms of what I thought was Stage 3 ALZ. Given my strong familial history of dementia (including early onset - I am only 63), it scared me to death. But I didn't know how to stop.
Fortunately my car broke down on July 3, and I couldn't drive in to see DH for 8 days. That finally broke the chain of my obsessive need to always be there for DH. I finally accepted the fact that he is dying and nothing I do or don't do is going to prevent that. I have always been someone who fixes problems, and I imagine that as a physician, you are hard-wired the same way. It was extremely difficult to admit that I can't fix this and have no control over the situation and to begin to let go.
I have forced myself to do things I used to find pleasurable. To get out and be around other people. To start small and do little things around the house. To go to the walking trail. To think about things other than dementia and caregiving. To celebrate what I do for myself and not beat myself up over what isn't getting done. To look for and find the joy in life. To let go and trust God.
Slowly my life is getting better. I no longer have many of the cognitive problems I was having. I am eating better and getting more sleep. Sharing my issues in a caregiver support group helps, and I am looking for a therapist. Accepting help, especially with things around the house and yard. Treating myself with the same level of compassion and care as I treat DH. Yes, the grief still overwhelms me at times. I cry, pray, and somehow make it through the storm until the grief subsides. And then I wipe my tears, lift my head up and look for the joy in life again.
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M1
You have given so much. And continue to do so as you march toward the inevitable.
While hesitating to give advice to a you, a physician; an SSRI, a talk therapist and a to do list. Hire outside help for the bigger projects. Mark one thing a day off the to do list. Journal. Give yourself permission to visit every other day.
You have to take care of you too.
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You are feeling the effects of neglect. You have neglected yourself and you are just starting to recognize it. I think all comments thus far are telling you to take care of yourself, sacrificing your life for your LO does no one any good. You know well that our LO can not be saved and can’t really understand what we are doing for them. Our efforts are futile as there is no coming back from dementia. I am sorry for your loss and pray you will read some of your own post to motivate yourself to take care of you. 🙏🏼🙏🏼
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@M1
I feel like I could have written your post at times. I feel like I got through dad's disease progression, however challenging he could be, emotionally OK— we didn't really get along and I'd already done a lot of work around how that wasn't really my doing. I was able to detach emotionally from most aspects of his disease. It was still sad and tragic but I was able to push through and do what needed to be done.
My stressors now are different. Alas, COVID derailed my son's (30 with "mild" ASD, ADHD and GAD but functional— college grad, driving, working a PT public facing job even) progress into an independent adulthood and undid a lot of the social progress he'd achieved. COVID also prevented my mom from creating a new life in stage 8 which meant I had to carry the emotional load of keeping her OK mentally on top of her ridiculously long laundry list of significant medical issues. She's also exhibiting signs of cognitive impairment since the start of the year. We've done the initial bloodwork and MRI and are waiting for a call to schedule with the memory center which will be at least 6 months out. I don't know if I have it in me to do this again, especially for someone I care about. I also have a recently widowed bestie who deserves my attention, a wonderful DH who is 10 years my senior with well-controlled heart disease and a left knee begging for replacement.
I had all the behaviors you described excepting I'm not as good with the exercise and was getting impatiently snappy with others. I saw my PCP and we talked about it. She feels like I'm experiencing situational depression. This isn't anything you'll find in the DSM-5; it's sometimes called adjustment disorder with depressed mood. I elected to try medication— Wellbutrin in hopes it might activate me a bit. I took Lexapro during a bout of PTSD and while great for the anxiety, I was sleeping 15 hours a day and exhausted. I'm not great, but I'm not constantly irritated.
I saw my endocrinologist last month for a routine visit. He noticed my T3 was low and bumped my levothyroxine dose up. My hypothyroidism has been very stable for a couple decades, so this was a surprise. If you haven't had a routine physical, it might be worth a visit.
Overcoming the inertia has been harder. I was able to push through and do what absolutely needs doing but little else. My people have food, clean laundry and clean bathrooms. What had helped me take on the vast list of things that need doing was to be gentle with myself and give myself one or two small tasks to do daily. Today that's a 20 minute Pilates practice, swiffering the upstairs and bringing a box of old pictures upstairs to stow under my bed.
The below describes the situational depression thing pretty well.Situational Depression: How It Differs From Clinical Depression (verywellhealth.com)
HB1 -
Also chiming in to say I can relate to much of what you are describing, and I’m only in my early 50s but have had several significant life stressors in the past 10-15 years. I also trained as a physician, worked in very demanding jobs where I saw some harrowing things I couldn’t discuss with anyone, & have 2 children with autism. In addition to watching my family navigate the decline of PWD and some common dysfunction it revealed. I would not discount any impact of the decades of functioning as a doctor and those expectations, plus having a partner whose dementia experience has sounded very difficult even compared to others in this forum. I wonder if your body and brain are saying you must rest a while. Sending you comfort and the ability to delegate for a while.
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I feel the same way. I think it' stress. I don't have a very strong support network and I find that being on my computer is the only thing that seems to help. Hang in there!
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Agreeing with the posts - stress, grief, not taking care of you…
Barry Petersen's book was interesting about his wife he has loved so much. "Jan's Story". He got to a point where he was just totally worn out. Interesting read, really more for spouses, as you.
Sending big ((HUGS))
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M1, wish I could send you a huge hug right now. It's just got to be the prolonged stress and grief. Your mind and body need rest and space.
It's hard enough with a parent, I can only guess at how much more difficult it is to go through this with a life partner. Be as kind to yourself as you have been to so many others who are struggling.
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I agree with quilting. It is grief! I recently moved my LO with me and it’s been just over a month and I feel the same way. Everyday I do the same dance get work from home get anxiety of how to redirect the big question of when will I be going back home. Try to do things and make it interesting for my LO and I feel like O am failing. One he isn’t interested in much tow I’m all out of energy. I just want to lay down and sleep.
Try to give yourself rest time and time to yourself. Try to find a little joy even if something small.
Prayers of energy and peace your way.
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I think it's stress and grief too. But when it is unrelenting, one does wonder when the effects become irreversible. I imagine it's similar to what happens to a long-term prisoner or hostage. We know we won't be the same on the far side of this terrible journey. And then I think of the courage of someone like Nelson Mandela and tell myself to pull myself together, I feel silly for making such a comparison. I want to remain the master of my fate....
You guys always help.
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@M1 I do think life as a caregiver forces us into something like autopilot. I asked my friend who cared for her mom about the exhaustion and she said “it was like a walking coma.”
I have had mild depression/anxiety every day. I have gotten some relief since my mom is now getting better care but am certain this has experience has changed me in ways that I don’t even know yet. For now, when I am not doing something that absolutely must be done, i’m perpetually fatigued and just want to check out. As my friend said “like a walking coma.”
I cannot even imagine what it would be like if this was happening to my partner. But I do believe it passes. And it changes us forever. But I’m here for it because that means we were present for the caregiving and fully there for the person and the experience.
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walking coma… yep, that’s an apt description. I agree with the ‘I only get done what must be done’. I think it must be like trying to walk in quicksand or molasses2 -
@Quilting brings calm yep. Molasses or quicksand. My friend swears it got easier when her mom passed, but was like this until the end. She has zero regrets for being so involved.
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I don't think you're paranoid at all. I struggled with that all day today: it's why I got on here this evening. You just put into words what my day was like. And judging from the comments, it was that way today for a lot of us. I tend to think of it as "mental paralysis" but I like the description of "walking in molasses." I really think it's the brain's reaction to overload, overload, overload.
Which means, I will now reject any and all guilt for doing "nothing" for three hours, order the typewriter I was looking at and dithering over, and go make my parent's supper—and my own!
(Let me just add, your comments have been so educational and helpful to me—I am sending mega-hugs your way.)
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I didn't happen to catch this part in my earlier post: we say we're afraid we won't be the same, but what we're really afraid of is that we'll never find courage, peace, or joy again. That somehow our minds will get locked into this dark trap and never get out, and we will be permanently broken.
As it happens, however, we tend to get our definitions mixed up. What we think of as courage is more often a transient emotion that depends on the amount of energy we have at any given moment. We "feel" brave when we feel good. Whereas real courage is just doing what it takes to survive the moment, and trusting that we will survive. Joy may feel ground out of our souls one day, and another day, it can take us completely by surprise.
Fortunately for humankind, the brain is remarkably plastic: it can heal, and it can relearn joy, contentment, and a sense of the worth of living. We may not be "the same," but that's ok. We don't have to be. We can find a worthwhile life on the other side. Trauma does not have to form a permanent part of our identities, any more than a sandbar "changes" a river. The sandbar may force the current around. It may cause the river to create a new loop. But despite all the sandbars, oxbow loops, dams, drawn-off water, etc., the Mississippi River is still the Mississippi River.
And, thank God, there is life beyond this journey.
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Beautifully said! Thank you.
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