Dad had dementia. His last three years of life were spent essentially with me as his support and guide. Dad was fiercely independent and dealt with a lot of anger from age 88-89 — losing his license to drive, struggling to walk, resisting the use of aids like canes and walkers, becoming incontinent, and eventually becoming bedridden after having COVID. He fought everything all the way. He never openly discussed his frustration due to suffering with dementia, although he did say a few times that his mind just wasn’t what it used to be. Due to anosognosia, he was resistant to the painful changes that come with this disease. Most of his anger was verbal, but he was always pretty careful to be nice to those he didn’t know as well — he never lost his sense of propriety. It hurt when he would thank caretakers profusely for help, but complain about the smallest of things I would do wrong. I get that he was grieving his lost life, and (as his closest family member) taking it out on me because it was safe to do so. From age 89-90, when he had settled in at a good assisted living place, we did have some lovely moments together, but I just can’t seem to shake off the recent memories of the anger directed toward me. I feel like I’m being selfish as I watch everyone share about his favorite songs, warm hugs, accomplishments, hobbies, etc., and I will join in, but right now I feel…..used up. Maybe even just used? I can’t even cry.
Coming to you all here because this place is better than a therapist. You all know what it’s like and understand. Help me get out of my funk if you can!
I feel like I'm harboring resentment towards my family that don't help with my mom. I often think once she dies, I will never speak to any of them again. The thought of being completely done with them actually makes me feel really good.
"Feeling powerless is the number one contributor to burnout and depression."
(At helpguide.org ->family caregiving -> Caregiver Stress and Burnout)
Hope this helps...
It was going on a Casino trip that helped me remember who my Mom was. A High school friend sat in back of me and reminded me what my Mom did for her. Gave her a safe place to land. Treated her like one of her own. Made sure she had her grape juice after cheerleading at a football game. Allow her to spend the Summer with us when she worked across the street and now didn't have to worry about how she was going to get home when working late.
So, think of the better times.
I lead the music in Church. The day after we buried him, we had an 'all music" meeting, people chose their favorite hymns and we sang them. I had prayed in advance that I could hold it together during this meeting as I knew how much the beautiful music of our church meant to him.
I was FINE until the closing song, "I Know that My Redeemer Lives" and I completely LOST it. I was crying so hard that the whole front of my dress was saturated.
Then I was fine. Since nobody really looks at the chorister, I wasn't too embarrassed--only a few people knew I had just lost my dad. There were some wet eyes in the congregation, for sure.
I've had some moments since then (18+ years) where I have been sad and just missed him--but that one breakdown was all I really did.
Everyone's grief is as particular to them as anything else in their lives. Many of us pre-grieve so much that when our LO actually passes, we are in a state of blessed gratitude.
My mom is taking the long, slow slide. She will probably live 5-7 more years. She's 92, but since she has always fussed her own health--she'll live forever.
My relationship with my dad was wonderful and a true gift. My relationship with mom is fraught with anxiety and frustration. I think that is a big reason I won't grieve over much when she goes.
I lost my Mom last week, and Dad last fall. Both 92, both at same facility. So I don't have the full-time caregiver experience as you, but I was involved in their care and dedicated a lot of time and energy to make their last months comfortable and pleasant. They were mostly appreciative of me, but there were times where there was meanness and resentment. It wasn't always easy being understanding or forgiving. I had to remind myself they are not the same as they used to be.
So where am I now? Still feeling a little emotionless, and also empty, like you. And yes some guilt, for not feeling really sad, and feeling a little uncomfortable with all the heartfelt sympathy and glorious memories.
And feeling selfish too, needy. I MISS being nurtured by my mom, miss being protected by my dad, and I miss their approval. So how I'm managing now, in this unlabeled stage of grief, is I've found little activities that I enjoy, that I think mom and dad would approve of: I'm planting spring flowers, setting out birdfeeders, and cooking special family-tradition dishes. These are things that have good memories, and feels like I'm honoring them, plus I'm outside and moving around.
I wish you warm travels on your healing journey.
I think there may be a good deal of "relief" for your Dad, and for YOURSELF now in your heart, but you cannot express that for fear of being judged. I think that you just lost your entire reason for "being" with having been these last years joined at the hip with your Dad and his needs. It would be normal to have a time of feeling lost and empty.
If you feel you need help I would forget about family, and seek one on one counseling. Licensed Social Workers who are trained in counseling on life transitions and who have their own counseling practice are often the best at this.
It is just that FINALLY it isn't "all about Dad". It's now all about you. Others have guessed at what you need and are wrong. What you need is a place to express all your feelings honestly and openly.
Allow yourself time to feel lost. Allow yourself time to "not have the answer" as to which fork in the road to follow. Allow yourself to feel relief that you never have to have any fear now about your father. Take it slow and let yourself feel.For so very very long your feelings, your wishes, your own life has not mattered a whit. Now that it finally DOES matter you are allowed a bit of confusion in combing out your next moves. I bet if I said to you "Louise, what do you want to DO now for yourSELF, you just wouldn't have a clue". Start slow. There's no hurry. It's finally about you.
Be as honest as you are able with family. If they are going on and on just tell them "You know what, I haven't A CLUE what all I feel right now; I will let you know when I do".
I experienced significant mental anguish at my parents' behavior & the breakdown of our family. When dad died I felt relief at first because it had all been so awful. I did not cry, at all. About a month later I went into a funk that included guilt and regret. Also, I was still having to deal with my mom who I had begun to greatly resent (after dad went into the ALF, I was the one who took his place as mom's verbal pin cushion).
I saw a therapist for a while but she sucked and then Covid hit so that ended that. I am forever changed and I never really cried it all out. Tears come in brief waves and are especially triggered by hearing certain songs that my dad enjoyed or that just generally remind me of him.
But honestly I can't really look at my "family" situation the same upon reflection and I truly am forever changed after seeing my parents turn on each other and just having to manage their downward spiral 100% on my own.
You expect your parents will die at some point, that is a part of life. But the experience of dementia is just something you can't fathom until you've been through it.
An older gentleman who was an employee at my dad's memory care facility once said to me "dementia destroys families". That saying stays with me. It is so true (I am forever changed).
You're having to overcome A LOT: hurt, from his words and actions toward you, regardless if he was purposeful about them or not; exhaustion, from unending care from all hours of the day and night; and a change in daily habit--a vacuum of the loss of ritual.
You DO NOT deserve to feel "selfish" when people talk about your dad. You're incredibly UNselfish to have worked on his behalf for so long. It's very possible you feel empty simply because you have nothing left. You've given a huge piece of your life in service to your dad. You've been through enormous upheaval.
Don't fight the emptiness. Rest often. Go easy on yourself. Getting physical energy back will take time and getting mental / emotional energy back may take even longer.
When you feel you're ready, gently ease into a new normal. Make a new routine that suits you.
I was Mom's live-in caregiver (my home was in another state) for 13 months until she passed. I was so exhausted on all levels I could barely function. When Mom passed I felt great relief, not just because her pain was over but that mine would be over too. I melted down the day after she died only because a sister made everyone come over to rip out Mom's things to get rid of as I stood there and watched. (Because of despicable sibling dynamics and cruelty, it took me years to overcome this period.)
What you're going through is normal. Be gentle. Be easy on you. You deserve this. *hug*
I think of that experience at times, as I sit beside the bed of my failing LO, and it helps me to be what I hope is the best for her.
If you can open yourself to what is beautiful to you right now, in your own life, you may find it a helpful way to initiate the catharsis you are waiting for.
However difficult it was for you, you were able to offer him the precious gift of unconditional love and support. Can you find a way to offer that gift, right now, to yourself?
love your answer!
Dad was so frustrated and angry over the state of his body and mind. They often vent and let loose on their "safe" people. The ones they know will never leave them no matter what. I am sure your dad's anger had nothing to do with you personally. I was in shock after my dad passed for many weeks. I was exhausted and so over tired. Had trouble sleeping and just getting through the days. My mom was left to deal with and she was difficult to say the least.
I miss him everyday.
and to all kind people on this forum!!
courage. take a deep breath. even terrible moments pass. beautiful things appear.
hug!!!!
my deepest condolences to you.
i totally understand you. you’re the one who helped - so you, more than any other family member, received all the anger, nastiness. your father showed gratitude to others.
in a way, you were “punished” for helping, by him, while he was alive.
and now you’re doubly “punished”, because this ruined your relationship with your father, while others can just remember nice things.
terrible.
and very common :(.
indeed, they say caregiving for our elderly parents can destroy the relationship. (even with sweet elderly parents). it depends how difficult the caregiving was: how much stress? how much time? how much did it ruin your career, your personal life?
i have a male friend (very kind), who took care of his sweet mother - but it was 6 months.
totally different from someone who helps for years.
i have a female friend: like you, she was the main caregiver. she adored her father (dementia). he took out all his anger on her daily. he made her cry daily. her siblings helped with nothing. he died. similar to your story. it took her a long time FIRST to recuperate from all the abuse. and grieve the death. and in her heart, she knows SHE did the right thing, while her siblings ran away. she got “punished” for doing the right thing: him yelling every day. but she knows she did the right thing. her conscience is clear.
it’s like…one is given two bad choices:
Option 1.
don’t help. this way you won’t be yelled at. but without your help/advocacy, your father would have suffered more; neglect from others. live with guilt later, that you abandoned - even though abandoning was necessary for your life. no matter what people say (“don’t feel guilty”), you would have felt guilty, because you don’t have the same values as someone else. and they don’t need to live with that decision/advice (abandoning). you do.
Option 2.
help. but get yelled at, and suffer deterioration of your relationship with your father.
——
you didn’t have a choice. of course you helped, because you’re kind louise.
take a deep breath. you’ve been through a lot.
i wish you to:
-heal from all the caregiving
-heal from all the verbal abuse
-if possible, take a vacation. (even in your own home). do only nice things.
-reward yourself for all the wonderful love & care you gave, year after year.
————your conscience is clear. that’s priceless.
-the grieving will come
-the wonderful memories will come back!
-if possible (if in your case it’s true), think “it was the disease”.
hug!!
the grieving will happen naturally.
and right now, rightfully so, you’re grieving for all the negative consequences on you!!
rescue yourself. you rescued your father again and again. now do the same for you.
this way:
it all worked out.
be super proud of yourself for all the love you gave.
hug!!!
bundle of joy :)
my mom is probably in her last days now and can’t string a sentence anymore … I’m praying it is her last days and not a new baseline…