Do I still belong here?

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Eyerishlass Asked May 2013

Do I still belong here?

My dad died 3 days ago. As most of you know I cared for him in my home for 5 years and for the past 6 months he's been in a skilled nursing facility. Technically, I am no longer a caregiver to my elderly parent. I have nothing to vent about. No questions that need answering. Nothing to be uncertain of or anything that's causing me any concern.

I found this forum a while back and just lurked for a while but I began enjoying reading the posts and becoming familiar with the people here and a month or so ago began posting. I found a rich community filled with caring people who are at various stages of caregiving. I loved this website (still do).

I had another forum for years but they shut it down Jan. 1st of this year because it attracted too much spam and the little community I had come to become a part of scattered to the four winds. However, one of us is here now (hey Rodeo!!). I guess my point is that I've been availing myself of online support as a caregiver for many years.

And maybe as time goes on I won't be spending as much time here, I don't know. On my other forum that I just mentioned when a caregiver lost the person they were caring for they didn't come around as much. I can understand that. But I still feel as if this community has something to offer and I also feel as if I have something to offer other caregivers. But since I am not a caregiver anymore do I still belong here? Are there other people here who are no longer caregivers?

And thank you all for the hugs and support. Being pretty new here I was very touched at the messages I've received. Since it's only been 3 days I'm still a mess and I'm really, really tired. I'm well aware of all the stages of grief and all of that stuff but nowhere in that list of things we go through when we grieve do I remember "Fatigue" being among them. While nighttime is difficult I do fall asleep and stay asleep but I'm sleeping later and feeling tired all day long. Today I took a nap for 3 hours and am looking forward to going to bed because I'm still tired. Is this my body's reaction to the loss of my dad? Depression? I can't tell. I've been busy, making arrangements, notifying people, that kind of thing. And tons of people are calling me. My dad was well loved. I spent about 4 hours on the phone last night just talking to people who wanted to talk about my dad. I'm not complaining, I so enjoyed hearing the stories and the condolences but it wore me out. I just can't seem to feel rested.

This Thursday is the memorial. I'm dreading it because everyone dreads that stuff but I'm also looking forward to it being over, going back to my life and trying to piece it back together without my dad. I have weird thoughts, I can hear his voice in my head. I wonder if his spirit is out there somewhere (he was an atheist) and if so, did I make him proud? Did I do what he would have wanted me to do? I can hear the sound of his voice wimpering, telling me how scared he was. I can hear him telling me that I'm the one person he can trust 100%. The only person he could trust. I tell the people I speak to on the phone that he died in his sleep and we all comment on how peaceful that is, etc. etc. etc. But what I want to scream is that HE WAS NOT AT PEACE! HE WAS TERRIFIED! HE LOST ALL OF HIS DIGNITY AND WAS OUT OF HIS MIND THE LAST FEW MONTHS OF HIS LIFE!

I spent so much time with him the last week of his life and I'm so grateful for that. I wasn't there at the moment of his death but I was there to comfort him and to just be with him for days and days prior to his death. I cry because I miss him and because I love him and I cry because he had such a horrifying last week on earth. The hallucinations, the pain....My being there made everything better for him and while I know he loved my brother dearly it was me he wanted. I was the caregiver.

But I'm not a caregiver anymore so do I still belong here?

End of Life

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score 1 · Answer 1

OH my I've had those kinds of dreams too...lots of them where I suddenly remember I have not been to Pgh to take care of Mom is such a long time, how I can have been neglecting her so? And lots of dreams where one or both of my parents are up walking about the old house, where I am inexplicably living but still having to think about getting to work here, and who will watch and stay with him or her...So if those kinds of dreams mean you are crazy, then that makes two of us!

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score 3 · Answer 2

Yes you belong here. Your past experience as a caregiver can offer so much advice for those who are just entering this role and those who are already caregivers. You are a vital part to this forum.

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score 2 · Answer 3

I am sincerely sorry for your loss. It's obvious you loved your dad very much. I lost my mom over a year ago now and I'm still on this site. Why? Because there are times that I still break down over that loss and there are times (like now), that I feel that I can give strength and encouragement to others by being here. I hope you stay because people like us have much to give in the way of advice to those who are new to caregiving. Bless you.

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score 0 · Answer 4

Please accept my condolences on the loss of your Dad. Your post made me cry. I could almost feel your pain. My husband died 14 years ago, and I believe he still watches out for me. Sometimes I think he may be the little bird that lands on my deck each morning and sings outside the window.

Of course, it will take some time to get into a "new" routine. You were used to doing for your Dad. Making sure he was fed, clothed, washed, and comforted. You are a wonderful daughter, and I know he is singing your praises. I was always told that our loved ones who pass will now do the things they always loved in life.....(my husband is playing golf up there)....lol.

It will take some adjustments, and you will always miss him. But now, take time for you.....eat well, exercise, visit with people, and enjoy your hobbies or find new ones. Yes, exhaustion is part of the grieving process. You don't have a lot of energy to spare right now. It will all come back in time...(as they say). And please let us know how you are doing dear.

(((HUGS)))

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score 1 · Answer 5

I see no reason why you should not be on this site. You were a caregiver. You went thru the frustrations of caring for someone at home, and getting to NH and the bereavement stage. You have first hand knowledge that can help others who are going thru this. And there are people who might think this. If they do and have the nerve to say it, then you have my vote to go ahead and defend yourself and tell them off.

There have been so many people on this site whose parent has passed away..and they have helped me tremendously. MsDaizy and another poster saw from my postings that mom was close to the end. They experienced this last stages of dying, and were kind of enough to tell me. I was able to text my siblings in the states. All except baby sis made it home in time to say their goodbyes to mom. If others had not warned me, i would not have known. Mom's death would have been a shock for me. But, we were all given time to acknowledge her impending death. My only regret was that I didn't call mom's 6 siblings here that mom was dying. I was guided on what to expect from mom as the days got closer. So, Eyerish, yes - you do belong here. You can contribute with firsthand knowledge.

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score 1 · Answer 6

He was telling you something important. He was telling you he loves you and appreciated everything you have done for him. He was letting you know that even if you can't hear him say it, he still does and needs you to remember it always.

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score 0 · Answer 7

Lori,

I'm sorry to hear about your loss. It's still fresh for you. 3 months. I guess I shouldn't expect miracles after 6 days.

I had this nightmare about my dad last night. It took place in our old kitchen in the house where I cared for him. He was sitting on a barstool at the island in the kitchen and I was on the other side talking to him. We were having a conversation and each time my dad went to talk his voice would get softer. I asked him to speak up but when he'd talk his voice was too low. I asked him to talk louder because I couldn't hear him but I still couldn't hear him and he kept talking and I kept thinking, "What if he's telling me something important and I can't hear him?!" I woke myself up out of a sound sleep, yelling "Dad!! I can't hear you!!!"

It was creepy.

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score 1 · Answer 8

I learned a lesson about life from parenting. Just about the time I got good at handling a two-year-old, she turned two and a half, and changed! You have learned a lot of lessons on your journey, and here we all are, asking for your wisdom. So please share it for as long as it feels good to you.

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score 2 · Answer 9

The experience changes each of us forever, and being able to help those coming after us sometimes helps it be meaningful. One of the things they told me in hospice support group is that the relationship with the person who has died does not end at their death, and its so true...there are anniversaries to cope with, regrets to cope with, emotions both good and bad, the relief, the guilt, the pity and the pure "missing-you-so-much" that all happen and mix up with each other. This is my second mother's day and third father's day coming up with no one I needed to buy a card for, and I'm still on here. Do what helps you the most!!

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score 2 · Answer 10

I am comforted by the answers to your question, because I lost my mom in February after having been her sole caretaker for almost 13 years. It occurs to me that I should probably check out of these forums as well, because I'm no longer a caretaker, but I still find this forum enormously helpful. As difficult as it was to care for her, especially in the last couple of years, I find there is still quite an adjustment period. I'm happy to have my life back, but miss my mother, and I'm feeling at loose ends these days. I understand the fatigue; it really was a relief to have the funeral / memorial flurry of activity behind me but when all that was over, including the thank-you notes and dealing with clearing out the house, I find myself thinking "Now what?" much too often! I know this will pass too; it's part of the grieving process, which is really complicated by the caregiving issues preceding Mom's death. Just be patient with yourself--sleep and nap as much as you can and don't feel guilty about it. And don't look back and start critiquing yourself about the things you did and didn't do while you were caregiving. I was certainly not perfect--none of us is--but I did the best I could with her over that long, long haul. Now is the time to start looking forward. God bless.

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score 2 · Answer 11

You have both experience AND hindsight. Stay till you don't want to stay.

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score 2 · Answer 12

So sorry for your loss.
Please stay.

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score 1 · Answer 13

Hi Eyerishlass... Yes, I think you still belong here. And u can share your insights. We've both graduated from our caregiving duties.

Let me share here a link, also from this same website, about recreating your life after caregiving duties were over.

https://www.agingcare.com/discussions/successfully-recreated-life-after-caregiving-155712.htm

Hope the comments will be useful and insightful for people like us who are learning to move on slowly and finding back our own selves and adjusting to the challenges of the new situation. Good luck to all of us! God bless everyone here.

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score 0 · Answer 14

First, sorry for your loss. Don't worry about being tired and overanalyzing the fatigue -- you ARE TIRED and it will take awhile to catch up on your rest -- mentally and physically. Do watch out of depression, but I think you just need some time to get thru all this. Give your body and mind the rest that it needs and time to adjust to your "new normal". Bless you for the love and care you gifted to your dad all this time.

By all means, stay with us!!! You can be of so much help to the remainder of us that are still going thru this. We need to hear more from people like yourself who have walked the walk and gone down this journey to give us hands on advice and support.

I wish you much success, happiness and peace as you move forward and regain your life and freedom from worrying about your dad. Enjoy life, cherish your freedom and take advantage of what lies out there for you -- that is your tribute to your dad and what he would want for you (live the life he couldn't or wouldn't)!

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score 0 · Answer 15

Yes you do still belong here. You have gone through a journey with your father - a journey that others will experience as caregivers. You have information they will appreciate.

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score 1 · Answer 16

My thanks to you all. I really wasn't sure what the right thing to do was and if I commented on some random post if someone might think, "She's not a caregiver anymore and needs to move along." I guess I didn't want to intrude but you all made me see that I wouldn't be intruding. I wish I had found this site last winter when my old site was shut down.

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score 0 · Answer 17

Most definitely you belong. Don't let anyone say otherwise. I've read a few posts where people eluded that once it's over you don't remember what it feels like to be a caregiver...insensitive clods! You'll always remember, when you think of your dad, you will remember. You have so much to share, you need to share in order to heal. A lot of us have lost one or both parents but we still come here for many reasons. I feel like I am among friends, I hope you do also. Please accept my deepest sympathy on the loss of your father. My heart breaks for you. I still miss my dad like crazy and its been 17 years.

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score 1 · Answer 18

I think you should stay...It was the time after the services were over and the family and condolences sp? went away that was the hardest. when you decompress and reflect on the loss. Stay here, sounds like many do, I believe our posts help ourselves and others simultaneously!

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score 4 · Answer 19

Yo Eyerish,
Over on the Grossed Out thread there are a bunch who are still here although our parents/spouses have died and we are in the hot mix of active caregivers on the thread who are now experiencing what we have experienced. Like msdaizy says: knowing you're not alone makes all the difference. Before and After.

In the aftermath of caregiving the support you will get here will really help. It has helped in my life and it continues to on a daily basis as I check in with friends that I have made here.
Some from the Grossed thread have actually visited with each other in the actual real world! I don't know if that has gone on anywhere else here and that might be interesting to find out. Probably has since we have shared more with each other through collective experience than many have been able to share with family or friends.

As far as people calling and going on and on, that is their way of dealing as I know you know and when we are in caregiving mode we make ourselves available to other people's suffering.
Maybe you can get through the memorial and listen to more of it but be protective of yourself and treat yourself with the same love and care that you gave your dad.
I bet you wouldn't let anyone wear your dad out walking down memory lane and you don't have to get worn out with it either.
Grief is real and how we all deal with it is unique to us.
When someone is wearing you out just say: I need a break. They'll get it.

Calicaregiver, your post brought tears to my eyes because it shows how hard it is when someone tells us to get over it and move on.
My dad died in '93 and I can still lose it. I just cry it out and try to pull myself together and sometimes I'm good and sometimes I need some time. Just is and anyone who tries to push their grieving schedule on me has qualified for an earful.

I am so sorry that both your dads experienced the terror they did at the end of their lives. End stage anything puts people through hell on earth and puts their close caregivers and family through it as well. Please keep writing about it and not keep it inside so it won't hurt you. And please Eyerish, try not to second guess yourself or have any bad feeling because you weren't right there at that moment.

I think we all have spirits whether we are Atheists or not. I think that when we die we learn the truth and that is when the peace comes. I think that our dads and moms who are gone live on in our hearts and in time we get easier with it but there will always be a hole and we just live with it the best we can.

I heard someone compare grief with waves washing over you. They just come and then it recedes like the tide. You let it wash over you but you know it will recede in its own time.

Hope you stay.
lovbob

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score 4 · Answer 20

Eyerishlass, I think that the role of a caregiver is forever. Now you are on a part of the caregiving path that we will all have to face someday and your advice now may be more important than ever. I would love it if you could stay here with us and help us. But if you think coming on here starts to impede your ability to heal -well, just make sure you put your needs first. But as for belonging here-oh my yes!!!! Yes Yes Yes!
Get some rest, lass, I am sure you are catching up on months of needed rest. Let your body heal-let your heart mend. (((((((hugs))))))

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score 0 · Answer 21

You are very much a part of this site, you are grieving and you may want some time to deal with grief as there is no limit to how long to grieve but you also have much to offer because you are compassionate and caring. Again...my sincere sympathies and please stay in touch...you are needed. Hugs!!

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score 1 · Answer 22

I absolutely without a doubt believe you still belong here. I will tell you what I have told others...I stay on.. to help others get through a rough time in the journey of caregiving..it justifies my journey with mom. As much as I would like to say I am not a caregiver...I am and will be... always. Because although, I am no longer taking care of my mom. I feel the need to stay on and help others get through a rough time. I know one thing that helped me...is knowing I was not alone. This site was my refuge. I knew that what I was going through...someone on the other end could relate to me, help me, and advise me...or show me support or a hug. I also know it's been therapeutic for me. Its only been recent that you lost your dad. We are here for you...whenever. God Bless

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score 1 · Answer 23

Irishgirl, your post made me cry. I cried like a baby...I'm still crying. It really touched a nerve, and my heart. My dad died suddenly 7 years ago, and I'm still devastated. I miss him so, so much. Other family members, and some friends don't understand. They think I need to get over my grieving for him. It's so hard. My dad had no faith either, and he didnt believe in God at all. I think he wanted to, but he just didn't. He was soooo scared when he realized that he was going to die very soon. He was like a helpless little child. My dad, the bravest, and most courageous man I had ever known....protector, defender, advisor, soldier, and my biggest fan....was suddenly so weak, and afraid. He couldn't be brave. He had such over-whelming fear. It broke my heart in half, and I haven't been able to get past it. I wasn't disappointed in him. He didnt let me down. I still loved him just as much as I always had. I didn't care if he was brave or not anymore. I just didnt want him to die....and, he didnt want to die more than anything he wanted to live. But, he didnt. I have never felt more helpless, and inadequate in my whole life. I realize now that I still have a longway to go before I can come to terms with his death. I too easily become over-whelmed and over sensitive when the subject comes up or people that knew him, and loved him want to talk about him. They want to feel a connection to him through me, and I can't even honor his legacy by embracing his friends, and their memories of him. Please don't go anywhere. You understand exactly what I am feeling. But, you seem to have a much better grip on dealing with it emotionally. You're strong. I wish I could have that kind of strength.

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score 0 · Answer 24

Of course you do! Other situations may arise and you may feel safe exploring them here. So sorry for your loss

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score 1 · Answer 25

I agree. Please stay as long as you want. I enjoy hearing what you have to say.

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score 3 · Answer 26

We need your experiences and wisdom. You will be thinking in hindsight and that will help so many of us. Dad might not need you anymore.....but we do. Please stay.You might need to be needed.

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score 4 · Answer 27

eyerishlass, I read and reread what you wrote. I remember how tired I was when my father died. There were so many people around and so many technicalities to be worked out. It was like working through a fog. My father and I were not particularly close, so it was not as emotionally hard on me. If we had been closer, it would have been far more difficult.

I do wish your father could have known peace in the months before he died. But at least he had a wonderful daughter and son. He was very blessed.

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score 3 · Answer 28

Yes you do belong here. You could be of great help to others by giving advice. I'm sorry for you lose.

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score 3 · Answer 29

being in the home care business yourself ive found most of your input helpful. i hope you stick around here. maybe when the personal trauma is behind you you can provide some laughs that this group sorely needs. im sorry for the loss of your dad but i think you should be totally at peace because of the togetherness and QOL that youve afforded him the last few years.

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score 4 · Answer 30

Yes! We like you.

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Do I still belong here?

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