On the advice of my therapist

PlentyQuiet

I have a habit of minimizing or stuffing down feelings and emotions. My therapist has given me the assignment of telling someone about something I am struggling with. Not to look for a solution but as a way to validate the experience. And so…

I have a great deal of resentment and a feeling of loss of self. DH was diagnosed while we still had teenagers at home. I went from parent as caregiver to spouse as caregiver with quite a bit of overlap. I still am a resource and support for the kids (20 & 21), but DH requires full time supervision and assistance with most things

I resent that I never had a chance to see who I was or what I wanted to do and become as an adult with adult children. The caregiving grindstone just kept going. I feel like I missed a chance to meet the person I had become as an adult and try life on my terms.

I don't resent my spouse, he didn't cause this, but I feel like a part of my life I was looking forward to will never happen as when we reach stage 8 I'm not sure how I will be or if I will have the finances to explore life. Will I go from caregiving back to full time work to be able to afford life?

Okay, I've said it. Do I feel better? No. But it is on the record now so I can't pretend the feelings aren't there. My therapist will be proud 😊

l7pla1w2

Welcome. This is a great place to vent and to receive validation. You certainly have a lot of company with your feelings.

You didn't say how old you are, but I infer you and your spouse are fairly young, and without a doubt that really sucks. But it sucks for all of us at whatever age. When we marry and say, "for better or worse", I'm sure none of us had this kind of "worse" in mind. A common feeling is, "I didn't sign up for this."

You will find abundant useful information in this discussion group. Another place to start is information for new caregivers,https://alzconnected.org/group/32-new-caregiver-help.

Take comfort that you are not alone. Definitely express your feelings here. You will get sympathy, empathy, and suggestions, all without judgement.

Buggytoo

You framed that so well. . . "Missing the chance to meet the person. . . ". There is a profound sense of missing out on my journey and succumbing to this one instead. It especially hurts to not know if I will ever get to be unencumbered again.

jfkoc

Well put.

Please feel free to come here and let it out anytime. We really do understand!!!!!

I remember my first sentence here was a question. Does anyn else here want to run away?

M1

Yes, your therapist will be proud—you articulated it very well. Definitely no easy answers to that one. A lot of us feel this way and have those same questions i think.

CStrope

I agree with you on so many points you brought up, and I have brought up these same things to my therapist! I often tell her that I'm afriad that I'm no longer who I used to be (let's face it….this changes you), and I'm afraid I won't know how to be someone different. Who am I any more? DH has only been in MC for 2 months, but I'm finding that I need to not go to visit him constantly, since then that becomes my life. I have to figure out what I want to do and who I want to be. I can't wait until Stage 8 to discover that, who knows how long it will be until then. So for now, I visit just a few times a week, and try and rekindle some of the zest I had for socialization.

HollyBerry

This is a great idea - tell your therapist thanks, I might try it too! I especially like the part about not looking or asking for solutions, but just to validate the experience.

I, too, dream of life "after" and sometimes that's what keeps me going. I have to have hope that it will be different and better.

ronda b

I thought I was the only one who thought about "life after". Thank you. Not feeling so bad and guilty now.

cavenson

This discussion reinforces today's daily devotion in "Strength and Grace" (Guideposts). "Nothing is more comforting than baring your troubled soul to another human and having them say, 'I'm here to walk with you through this,' or 'How awful for you,' or 'Let me tell you what I did in that same situation that really helped.' You suddenly feel not so alone. You gain the courage to hope." That's exactly what this discussion board does for caregivers because "no caregiver is an island. We need each other now more than ever." Thank you to all who bare their souls and share with other caregivers.

midge333

https://alzconnected.org/discussion/comment/209347#Comment_209347

If we are being honest, I think most of us have these thoughts. I know I do. I worry that my health and opportunities to do the things I wanted to do will be gone by the time I am done caregiving. You are not alone ronda b.

trottingalong

I always feel guilty if I attempt to say out loud what you wrote. It’s not easy, this road we are on. Having this group of people writing how they feel, asking questions or just being plain mad and worn down, helps me get through each day. Your therapist will be proud, because what you wrote helped some of us.

Petra2024

it’s so hard. Hearing you all share your experiences and feelings helps me get through the worst days…

teach365

https://alzconnected.org/discussion/comment/209347#Comment_209347

I am afraid to think about it.

teach365

I am sorry. I replied and then lost the rest of the thread!

RayeMc

Tell your therapist that you completed the task …. and helped others along the way. I often feel so guilty about thinking of the "after this" and wondering if there will be anything left of me when it is concluded. It has been helpful to see that I am not alone in thinking such thoughts and fantasizing about the next chapter. I always feel so disloyal to my DH when I have such thoughts but it is helpful to know I'm not the only one attempting to look into the future.

PlentyQuiet

Thanks everyone

It seems like I will have to report back to my therapist that (once again) she is right: a burden shared is a burden eased.

Cheryl11

What all of you have said is so helpful. I too, as many of you have said, feel less alone. Thank you this place to share and support. Means a lot as we navigate through.

LaneyG

I can relate to everything said here. Thank you and God bless you all.

Crushed

In 2010 DW was 58 and at the peak of a brilliant hard driving medical career. We had been married for 35 years DD#2 was getting married and had just finished law school DD#1 was married and finishing a PHD. I was already Professor Emeritus at 59 . We expected a future of major awards for her and travel and life grandchildren and shared love. We had both worked very hard and had prepared for a golden retirement
Then everything came crashing down. I spent 7 years a 24/7/365 caretaker. Then she went into memory care at a staggering cost. I don't mind the cost, we can pay it, because we gave up so much during our working lives. I live alone. I now have 5 grandchildren and a houseful of wonderful memories. I can and do travel, but I still feel cheated by the universe. I have a good therapists who gave me similar assignments.

I am awake at 3 am thinking about my loving wonderful brilliant wife who is as lovely as ever but has no real functioning brain.

MelissaNH

Thank you so much for sharing your thoughts here. You touched upon a level of grief that I hadn't yet acknowledged fully for myself. I am 52 and I left my career to raise our two boys from the day our first was born. It always baffled me why being at home was so freaking overwhelming to me. I had this beautiful picture of what our lives would look like since we made the financial sacrifice for me to be at home, but it was always out of reach. Looking back now, it's because this disease (FTD) was rearing its ugly face and taking my husband away long ago. I had three children, really. I did everything except bring home the paycheck and instead of being a partner, he seemed to always either work against me or create chaos. Once the boys were ready to graduate high school, "the Covid years" began and putting out DH's fires became a full time job and it would take me days to recover. My mental health was at risk. I was chronically stressed and becoming depressed. Fast forward to today, I am living in what feels like an impossible situation - too much for one person. My boys still need me. My husband needs me and doesn't even recognize what is going on. I have a special/high needs dog. Seriously, I'm drowning and I'm tired of being the caregiver. The sad fact is, there is no one to care for me but myself and that feels sooo out of reach. Loss of self is so relatable. I hope that by taking your therapist's advice you found it helpful. I definitely have issues with looking for solutions. I keep waiting for someone to swoop in and save me and yet I know that that is not going to happen. It will be up to me and me alone to save myself and I can say for a fact that I have been trying my best all these years. It's just a lot and I feel resentful too. I hope you will continue to post. Thank you again and big hugs to you!

l7pla1w2

I keep waiting for someone to swoop in and save me and yet I know that that is not going to happen.

Oh, gosh, I feel the same way. I want someone to take me by the hand, show me what I need to do, then lead me through the steps. But we know "The Cavalry Is Not Coming."

So I muddle along, daily evaluating DW's mental state, not sure where we're headed. She's still too competent to be in MC but frustratingly oblivious to just how impaired she is. She can't be left alone at this point, and it's exhausting being her entertainment director. We tried a day program, but she started sundowning well before the day's activities were over, and she said she would walk home by herself. Not remotely possible. Thinking now about in-home help.

It's a mixed bag, thinking about the future, isn't it? You can think of worst case scenarios, and there aren't many best cases.

trottingalong

https://alzconnected.org/discussion/comment/209401#Comment_209401

I’m so sorry your life plans were changed so drastically. The biggest pitfall of this disease is it robs us of so much that’s its often hard to put into words.

CStrope

https://alzconnected.org/discussion/comment/209401#Comment_209401

good to hear from you….its been a while

SSHarkey

I was the primary caretaker for my uncle, my father, and my mother. A few years after the last one died, my older sister got cancer. I am now her caretaker, my older brother’s, and my husband’s. My son-in -law told me a while back he’s ready to see me not have to take care of ANYONE! So am I! If there’s anything left of me!