How do you grieve?

verb007

My mom is 68 and in late stage 6. My parents are separated so it's up to my sister and I to care for her, although my dad is contributing financially. Mom is in a memory care facility that's doing a fantastic job but... watching your own mom decline in slow motion right in front of you is still so hard. 

I hadn't realized until recently how deeply its impacting me emotionally but I just don't really know how to process it. I'm 35; most of my friends' parents are still fit and healthy and vibrant, while I'm here helping my mom remember how to use the bathroom, paying for her diapers, and realizing it's been a year since I can remember having an even remotely coherent conversation with her. 

I feel like I want to just go away for a week and... I don't know, shout angry things into the void of the universe and curl up and cry? except I can't because mom still needs help and care and someone to visit her, and I still have a job to do and there isn't really a provision for taking leave to grieve a parent who isn't really dead but is definitely not a parent anymore. 

I'm so sad for her, and sad that we never really got to have a close relationship and now its too late, and sad that she'll never meet my stepkids or remember meeting my partner, and so scared that I'll get the same awful disease in 30 years and die afraid and unable to remember the people I love. 

How does anyone process all this hurt while the world is still going on around you? 

MN Chickadee

I could have written this a few years ago. I am 37 and my mother (74) is now in the late stages of Alz. Probably early stage 7. I was 18 when I first started noticing changes in her memory. Her personality changed and became difficult when my first born was a toddler almost a decade ago, so I really felt the loss there. She would have made an awesome grandma pre-dementia, but instead what little memories my children have of her will be of an ornery old lady and then just kind of a lump in a nursing home. I grieved so much. I would spend an evening listening to the Glen Campbell song that he wrote and recorded during his journey with Alz over and over, and just cry. The grief is real, as real as when someone dies. Just because their body is still here doesn't mean we can't grieve that the rest of them is gone. So.much.loss. Dreams, careers, money, relationships, golden years, independence all down the toilet. When someone dies of other diseases they usually have a point where everyone can say what they need to say, make amends, extend love and grace. There is none of that here. Just slow a slow and steady decline, in my case lasting my entire adult life so far. And yeah, watching my friends' parents take the grandkids for a weekend or teach the them to fish or travel together makes me more sad. And of course the insidious fear you will meet the same fate is always there. It is so awful. I don't have much advice other than to say I get it. Let yourself sit in it. Feel it. It's ok to let it in. My grief did pass some, I don't dwell on it as much now but there is always a sadness there. That's a part of this disease people don't get unless they have lived the journey. All I can do is find the small, simple, and rare moments of joy with my mother which do come now and then, do my best for her, do my best for myself  because that is what she would want, do good in the world in her honor, and try to raise my kids to do this when they are adults. I can't expect much more of myself or the universe at this point. I am at the bizarre part where I wish she would pass away. I can only say that kind of thing to people who get it. I now hope she goes soon, because her quality of life is gone and she would not want to live like this. It's a strange feeling but also a bit more freeing than the middle stages. I did find in person support groups cathartic throughout this journey so if that sounds appealing you might try your local chapter of the Alz Association. The groups were nice for getting practical advice, local recommendations, and just venting. Hang in there.

verb007

Thank you so much- it's really comforting to know I'm not alone, even if there's no easy answers for how to cope. 

I think you're right about needing to just take time to sit in it and feel all the things

RanchersWife

Verb,

I’m in the middle of caring for my mil. My own mother is recently dxed. Bam! Just like that I lost the person I talked to about my struggles. 

 I don’t know how you should grieve. I don’t know how I should grieve what’s happening now or what I know is going to happen again. 

ButterflyWings

Gosh Ranchers Wife. I am so sorry to hear this. sending you (((Hugs))). Hang in there.

Oh Verb, I am with you on all this. And Chickadee really laid it all out so beautifully, though it is sad what we all must "look forward" to on this journey to nowhere nice.

Have you looked into the Family Medical Leave Act (FMLA) with your employer? There are requirements that can provide (unpaid) time off to help attend to an immediate family member who is ill. It requires a doctor to verify some health issue or medical need (even assistance with IADL's) for a period of time. With our LOs having a terminal disease that is progressive, it seems like you should be able to qualify for some time off to spend monitoring, assisting, and just spending time with your LO if you want to apply for FMLA. Good luck to you. I posted a poem/prayer I found this evening, before seeing this thread. It is helping me some with the anticipatory grief today. Thought I'd share.

Battlebuddy

   So sorry Verb007. 

   Grieving is a huge part of this journey.

   I’ve always thought that I pretty much sucked at grieving , which cost me a lot  of anguish , lack of sleep, and physical suffering. I would stuff my feelings and sadness and it would come out somewhere in my body. ( usually with me throwing my back out)  

  I agree with everything that Chicadee said so won’t repeat.

   I am no expert on grief, but have really tried to kind of “ grieve as I go” down the Alzheimers trail. That involves having a cry in the shower at night as I review the day. Journaling. Praying out some sad statements of loss. And generally trying to process the sadness. It’s helped me and I don’t know how one can carry all the things that need to be grieved and let go of. Like I say, the alternative of holding it in for later didn’t work for me. 

   It seems there are three main losses that one gets sad about: the anticipatory grief of future loss as in passing of the loved one, the loss of the future plans and dreams, and the losses caused by the illness itself in the present. All are legitimate. 

    This is what worked for me. My back has been fine and so far I’ve kept my hair( another story) and am sleeping so I’m going to continue to Grieve as I Go. But I know others feel differently . I know Likkity at Stumptown Dementia does not believe in grieving someone who is still there . 

   This is just one persons opinion.

mommyandme (m&m)

Grieving sucks! Grieve as you go is spot on in my opinion.  Just have to sit in it.  When the grief wave comes, unless I’m with my loved one, I just do it.  If Im cleaning a toilet and the wave comes, there I am just crying over the toilet bowl.  We must just feel it, as much as it sucks, for our own health, we must. After grieving, for even a moment, acceptance may be able to present itself and provide some relief.

 Grieving while a loved one is alive isn’t necessarily about the loss of the person. It’s about the loss of plans, expectations, conversations, your life as you knew it, etc... the list is long.  

The pain is real, I’m so sorry for your struggles.  I hope today brings some peace for you and yours.  

verb007

ButterflyWings wrote:

Have you looked into the Family Medical Leave Act (FMLA) with your employer? There are requirements that can provide (unpaid) time off to help attend to an immediate family member who is ill. 

The tricky bit is that I am my employer... I run a music studio from my home. I've built some unpaid time off into the tuition schedule for each school year, but I used up one week for a professional development conference and several more days for some ER visits with mom. I'm sure most of my clients would be very understanding if I said I needed to take a few days off but at the same time- I try to mostly keep my personal life separate from my teaching life so it gets hard to explain why I keep needing time. Typing this out.... I can see I'm maybe being too hard on myself and it would be an okay thing to take a few more days here and there. 

Thank you for your thoughts and support! 

verb007

Battlebuddy wrote:

   I am no expert on grief, but have really tried to kind of “ grieve as I go” down the Alzheimers trail. That involves having a cry in the shower at night as I review the day. Journaling. Praying out some sad statements of loss. And generally trying to process the sadness. It’s helped me and I don’t know how one can carry all the things that need to be grieved and let go of. Like I say, the alternative of holding it in for later didn’t work for me. 

   It seems there are three main losses that one gets sad about: the anticipatory grief of future loss as in passing of the loved one, the loss of the future plans and dreams, and the losses caused by the illness itself in the present. All are legitimate. 

 

Thank you Battlebuddy! The idea of the different types of loss, and that all of those things are legitimate, was so helpful for me. I took some time today and cried and journaled and wrote out all the different ways I'm grieving and you're right- it really does help to grieve as I go. I think I get so scared that once I start, it'll never stop, and then I don't let it out at all. Thank you for your support and kind words. 

verb007

Mommyandme- thank you for your empathy and support. I did some "toilet bowl grieving" today (except mine was crying over a book outside a local coffee shop... thank god for sunglasses so no one could see). I'm really grateful for this community- it feels a little less scary and alone to know others have been down the same path

Tinman78

Verb, like all the others here, grieve as you encounter it. I have been trying to shove my feelings down, and I find that when I do that I get the dam breaking at some point. I feel like I have to keep the strong front for my sisters, my wife, my son and all the other things that are going on in life. I mostly just keep my feelings bottled inside, but once I start thinking about what is to come, I just break down, trying to keep it hidden when I do. Probably not all that healthy. 

I really feel for you. To have been dealing with this for this long and at such a young age for your mother. My father's decline has been very rapid. My mom would complain about my dad's memory before she passed in 2018 and when I started taking over managing his things long-distance, I noticed how bad his memory was. His memory was a slow decline until he got a blood infection in Sept 2019 and then he really declined fast. I had to move him down to L.A. from Oregon last Mother's Day and he was Stage 4, now he is early Stage 7.

I have a marriage counselor that I talk to once a month and I think in Feb this year, I was mentioning the issues with my dad and my feelings around it when he said "it sounds like you are grieving" and I just lost it. I hadn't thought of being able to grieve for someone who is alive, but it makes sense. The person you knew and loved is gone and has been replaced by someone else. I am still clearing out the storage of his things and if I think about how he will never need any of these things again, I break down (thankfully I clean the storage by myself). I don't know if this staged grieving is going to dull me when his body finally passes, but right now I just have to do what I can. Worst part is my 5 y/o will never remember who he was before the disease.

Becksoderberg

Hi,

I feel you, my mom is 74, in late stage, and I find myself trying to balance my job, and caring for my kids, and mother at the same time.  Just when I think I have accepted our fate, something will hit me and my eyes fill with tears.  Either that, or I am so angry at some stupid thing!  I have never experienced so much annoyance and anger than I have since my mother's diagnoses. I figure all the sadness and anger is tied into my grief.  

It's hard when everything is a top priority; kids, job, mother.  I do my best to balance and get to everything eventually.  Some things will just have to wait or be dropped.  This year, I feel good just making it to the end of some days or weeks.

The best thing I did this year is I got a cute, little puppy.  She is so lovable and I take a million walks which helps me think.  She also brings my mother and the other residents happiness when we visit.  Pet Therapy is real!!

I like to think everything I have learned about MC and LTC, POAs, the whole world of Geriatrics will allow me to help a friend when the times comes that they are dealing with something similar.   The hardest part about your LO being younger is that you don't have anyone close to talk to who has gone through something similar.  

Therapy and anti-anxiety/depression meds help too!  So many unknowns can cause a great deal of anxiety.  I also found reading lots of memoirs or stories about other people caring for parents with Dementia are very helpful.  Educate yourself so you can be there for your mom in the most supportive way.  

These are just a few ways I have survived the hardest loss of my life.

Be well and take care.