Grief Differences Among Family

howhale · November 30

I wanted to reach out to others here for feedback. I struggle trying to help family understand why their grief for the loss of their mother or grandmother looks so much different than the overwhelming grief they see in me. I know each and every one misses her terribly, so it is definitely not because they cared less or loved her less. It is obvious that, as the primary caregiver for all these years, I would have seen and experienced more maybe leading to differences. What I am after is a better way to calibrate us all. They are not stronger than I am, so why is it so debilitating for me? My simplistic answer to them until now has been "it took us ten years to get here, it might take ten years to get over it". Sounds good but I don't think it carries much meaning for them. So, here is a thought. If you consider this was a 10 year process from first signs to the end, and it existed throughout the pandemic (further reducing their exposure to her), how many times did you see her in person for a visit (all were a couple hours max)? How many times did you find yourself crying after a visit? How many times did you find yourself crying after an update was provided by email or phone? How many times did you find yourself breaking into uncontrollable crying in between these visits or updates? There is no judgement intended here and actually an encouragement for each NOT to share their answers. Regardless of their answers, my answer would be, for my 24/7 exposure over the 10 years, almost none. I never broke down or cried openly. Am I heartless and cold? No, I was "on duty" 24/7 for 10 years and could not afford to let myself cry in the presence of my wife and we were never out of each other's presence because I was the caregiver. The conclusion might be that they were able to process their grief in pieces after each visit or update, if they cried then. Over time their grief was terrible but came in pieces allowing one to manage the end and after better. In my case, there was never a time to cry, to grieve, I was busy and consumed with her care. I could not let her see me cry, she would not understand why. On those exceptions when it happened it frightened her and caused fear and confusion. Now, the end has occurred and I am no longer constrained, so every picture, every thought, every sound, etc. triggers grief because I was never able to relieve it over the course of her disease. I am interested in feedback on my thoughts. Has anyone else found it hard to help loved ones understand the depths of our grief? Thanks in advance for any feedback or thoughts.

howhale · November 30

I should also have noted that a part of this thought process would be to share with those going through their loved ones disease now. It might be helpful to know what they might experience at the end and after and consider if there is anything to be done along the way differently. Had I considered this before, I might have tried to get them to take time for us all to talk more openly or even using a therapist to help.

midge333 · November 30

Losing a lifetime partner and a parent/grandparent are very different. I had very little grief response when my mother died (she was 92) as it seemed a normal part of life. Losing my wife, is totally different. Our children's responses have been very different from mine and I think that is normal.

howhale · November 30

I also had quite different responses to my mother at 93 and other relatives than I am experiencing with my wife. I expect my children and others to have reactions more like mine with previous relatives. My struggle is their difficulty understanding why I am reacting in this way. I don't want to just reject their efforts to get me involved or participate in every event that comes up but I also have to manage what I am going through. I encourage them to signup here and read the postings to help but not much luck getting them to do that.

SDianeL · December 2

I just had this conversation with my step daughter. She lost her Dad. I lost my husband, partner and soulmate. Losing a parent is hard. Losing a spouse is devastating. I feel like I lost half of me. When you lose a parent you’re not living with them if you are married. You go home to your spouse. When you lose your spouse you go home alone. Everything reminds you of them. Everything. As caregivers we also have guilt. Did we do enough? We have anticipatory grief from the moment they are diagnosed until they pass. You want them to live but you pray they will die to end their suffering. Then you fell guilty for praying for that. Then we grieve again when they pass. The grief is both mental and physical. I never felt the physical grief with my Mom. As they say, “Grief is the price we pay for love”. The stronger the love the greater the grief. 😢💜🙏

midge333 · December 2

@SDianeL : A very good description of what one goes through after losing a spouse with dementia! You begin to grieve at diagnosis and at every little loss along the way. My biggest grief trigger was placing my DW in memory care. Then the finality of death. So hard!

Living Without You

Mary McCaslin

The milk truck hauls the sun up

The paper hits the door

The subway shakes my floor and I think about you

Time to face the dawning gray

Of another lonely day

Baby, it's so hard living without you

Yes, it's so hard

Baby, it's so hard

Baby, it's so hard living without you

Everyone's got something

They are tryin' to get some more

They got something to get up for, well, I ain't about to

Nothin's gonna happen

Nothin's gonna change

Baby, it's so hard living without you

Yes, it's so hard

Baby, it's so hard

Baby, it's so hard living without you

jehjeh · December 27

https://alzconnected.org/discussion/74719/grief-differences-among-family

Your comments sound like I spoke them. The part about not crying because it would upset your DW. So many times over the last 10 years, I wanted to have a good cry but had to hold it in. And when I cry, it's written all over my face for hours. There's no way to pretend haven't been sobbing.

I read all about anticipatory grief but I couldn't experience it, just kept up the false front, never admitting to anyone, outside of this forum, that I was struggling to hold it together. Now that he's gone, I find I'm most content sitting alone in my home. I know that's not healthy so I force myself to go out once in a while, but I don't enjoy myself. But I put on that mask again because I hate breaking down in front of others.

Losing a spouse is more like losing an appendage than any other grief I've known. And now that he's gone, so is my purpose.

LindaLouise · December 28

All of your comments make so much sense to me and help me feel like someone gets it! I was married for 47 years - from age 22 - and have never lived alone. My life was our life, our shared story; my kids were ours and we were a team. Now, it's only me. Since my DH passed in August, I have been struggling to even begin to understand the depth of grief I feel. I'll still see a shirt in a shop and think I should get that for him - and then I remember. Seeing an older couple talking together, hearing friends using the "we" pronoun in everything they share with me, the lonely nights - it all seems just too sad. My kids and grandkids are my saving grace - I am hoping with time that I can find things outside of them that bring joy, but it seems hard to imagine right now. I know I should practice gratitude and hope to be better at that, but the relief of seeing him freed from ALZ seemed to open the gateways for grief to some rushing in. Thank you all for sharing as it help so much to know I'm not the only one feeling sad and lost…

fmb · December 28

https://alzconnected.org/discussion/comment/261880#Comment_261880

Be gentle and allow yourself grace same as you would a dear friend. Everyone grieves in their own way and at their own pace. Eleven months since my husband died, and I still sometimes cry in public and frequently cry at home. There is no "should" in grief. ((Hugs))

howhale · December 30

I stumbled upon this on Facebook and thought it captured much of what we deal with regarding grief. I try to encourage my family to read posts on here (without much success) and I share information such as this below to help them understand that I will not move beyond my current status in grieving until it is right for me. Their process is uniquely their own and each is equally legitimate, so do not judge me or others. This below came from a thread titled: The After Glow

1. Scream in your car. It’s cathartic. Trust me. Give it a try.

2. Try not to compare your grief to others. Even if you lost the same person…it’s a different relationship.

3. Isolating is normal. Just remember to check in with the ones who check on you.

4. Ugly cries…like the ones that touch the depths of your soul are actually quite helpful. A release.

5. Express your feelings. Whether on paper, to a therapist, a trusted friend or using another creative outlet…get those emotions out so they don’t get stuck.

6. It doesn’t matter how long it’s been since you last heard their voice…the waves of grief can crash into you at any time. Any place..when reality hits again that they are really gone.

7. Let go of the guilt. We would all go back and do something differently if we could. You only had the information we had at that time with no way of knowing what was going to happen. You are only human.

8. Sometimes it helps to change traditions so it doesn’t hurt as much when they won’t be there..

9. But…Try to find a way to honor them at these events so they feel close to you.

10. Anxiety is normal. Because grief lets fear take over as you are now aware that terrible things can happen. It makes you feel out of control. Talk to your doctor if you feel it’s interfering with every day life.

11. Try a gratitude journal. I know this is the worst time to ask you to feel grateful but it helps. Just one thing a day. It could be that you didn’t burn dinner that night. But in time..it will get easier. That’s how you know you are moving through your darkest days.

12. Walk. Just getting out and getting fresh air and exercise can make a difference in your mental health. Try listening to comforting music on your walk. I love being out in nature to clear my mind.

13. Time doesn’t lessen grief. It’s what you do with that time. If you don’t grieve, emotions will have nowhere to go. You have to feel the pain of this loss. Lean into it even if it hurts. That’s how you move forward with it.

14. We are our own worst critics. Try giving yourself a no judgement zone. Grieving is frustrating. Especially when you have a particularly good day but end up a sobbing mess on the floor the next. Remember this journey is not linear. Try talking to yourself like you would if it was your best friend going through the same thing. BE your best friend because you are the only one who knows what this loss feels like.

15. Which brings me to self care. Give yourself love. And pep talks. And lots and lots of grace. 16. Grieving is a thousand conversations your mind has with your heart. Eventually your life (that you were given no choice but to live) grows around the pain. It’s a long road of getting used to this different world without your loved one in it. The pain will dull, wounds will heal, then the scab covering it sometimes gets ripped off again during special days. And so on. Which brings me back to #15.

Give yourself grace. Because I don’t have to tell you how hard this is. You know all too well. Just keep going. One minute at a time. One hour a time. Then one day. Just keep going.

Cobalt · December 30

we are in a whole different ballgame here as out LO is my adult son who has always had medical conditions and disabilities and then age 40 was ALSO diagnosed EOAD and Mixed dementia. The things we go through are different because my youngest son and I have our LO at home where we are full time caregivers. The other brother lives nearby but an hour drive. He only sees us about 3-4 visits a years and has not done any of the caregiving.

My youngest son has taken on the feelings of a father to his brother. He is having and will continue to have a vast impact on his life because of caregiving and also living here with his brother.

Meanwhile I am still mothering both sons and my grieving is very different. I’ve always known more than most others that my son’s life is day-to-day. He could literally die at any time because of his hydrocephalus and seizure disorder. And now all the ALZ and Dementia on top. I am actually starting to wonder if I will get to have a life “on my own” ever now, before I may decline. Ouch. Well, summing up here: everyone likely has a similar but different grief. Absolutely there IS a difference but in all cases there is validity and loss.

Grief Differences Among Family

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