Mom is actively dying

jpStar21

My mom began End Stage LBD 3 months ago. Family had trouble accepting this at first so I began EOL planning with little to no support. I began trying to get family consensus over engaging hospice with tacit approval until I began to take steps to do so. This past week when I observed what I believed to be the active dying process as her legal healthcare agent I ceased attempting consensus on the issue & did what was best for our mom. I engaged hospice then told my brothers afterwards. The hospice nurse spent time with my mother & in her meeting with me she confirmed that I wasn't crazy or overreacting. For the past week I have been at the nursing home every day holding my mom's hands, telling her I'm there, telling her I've got her, I'm going to be with her and help her & that she'll be OK. In the meantime I'm fielding questions left & right from my brother's, calming the fears and freak-out moments of my long distance brother, sending emails, texts, calls to calm them while out of necessity I've separated my emotions from my psyche for the time being to be able to remain calm, clear headed & supportive to my mom & also in my dealings with my brother's. With the exception of my husband this has left me feeling mostly unsupported & alone as I make the hard decisions no one else wants to face or make. Throughout my mom's journey I've managed to appear outwardly calm dealing with my Mom until this week. I broke down 3 days ago & tears began to spill for the first time. I managed through meditation and Tai Chi to center myself and regain my composure to be a calm, reassuring & supportive presence while with my Mom but I am left feeling so very isolated & alone as if I'm putting up a brave face as a small, powerless person rocked by a storm raging all around me. Any suggestions or comments are welcome.

calmmorn

Hi jpstar, welcome. I am so sorry to hear about your mother and what you are going through. We are not yet at the end stage, but I am also primary/sole caregiver for my mother. I can so relate to the feelings of isolation and alone-ness. I have a brother who is physically present but is completely uninvolved in my mother’s care, so can understand some of the family dynamics that you are experiencing.

I am so glad that you trusted your instincts and called in hospice. I have found it so helpful in my own caregiving to surround myself with people who understand dementia and what caregivers go through. I wonder, though, if you might be able to let go of some of the emotional caretaking and information relaying that you are doing for your brothers. Your calm, grounded presence is such an enormous gift for your mother. You also deserve to spend these final moments with your mother in the way that you would like.

Losing a parent is one of the most profound, heartbreaking experiences in life’s journey so I can completely understand the feelings of powerlessness and emotional turbulence. I hope you are giving yourself grace and permission to feel the enormity of the grief, loss, sadness… everything.

There are many caregivers here who have been through the dying process with their loved ones. I am sure others will come along, but I wanted to let you know that I am holding you and your mother in my thoughts and prayers, and sending you both much love.

bjohnsen3869

Hi jpstar,

totally agree with calmmorn. My father isn’t in the dying stage yet but just moving him to MC recently was a challenge trying to get consensus. In fact, that was one of the things that made me feel most alone, is the day, as his POA/MPOA, I had to just take control and pull the trigger. It severed an 18 year relationship with his GF and I. I had to learn to do what is best for my dad but also realize what IS best for my dad is for me to ok. As you know, dementia patients, like babies, sense our tense energy and no “brave face” can cover that. Might I suggest that you select 1 brother as your primary point of contact and let him update and field question and concern issues to minimize the volume you are receiving. Give them small tasks that may not have anything to do with your mom just to free you up a little. I love how everyone is so wishy, washy until an actual decision is made, then everyone has an opinion. Your mother put you as her agent for a reason. Right now, worry about you and your mom. Let your brothers know that will be your priority right now. It is not your responsibility to care for them. Let go of that burden so you can be completely present for your mother.

my mother passed 20 years ago of cancer, not ALZ, which, I must say, in my opinion, ALZ decline is harder to watch the cancer. I found my inner turmoil and chaos was inhibiting her from leaving me. I had to literally “check that bag” with the big Guy in the sky until the end of her journey. I, then, was able to be present with my mother at the very end and was able to be by her side, as she took her last breath. As she was struggling to breathe her last breaths, she opened her eyes and looked directly at me. I gave her a reassuring smile, letting her know it was ok, I was ok. Then she was able to go peacefully. praying for you both

Anonymousjpl123

I am so sorry that you are having to face this but really moved by your thoughtfulness, strength, and care for your mom. It sucks you have to go through this alone. I’m glad your husband is supportive. I think being with our loved ones - REALLY with them - and thinking of their care and comfort is number one. I am glad you made the hard but right decision. There is no right way to do this, but tAi chi and meditations sound like good tools and nourishment right now.

SusanB-dil

Hi jpStar - You are handling a lot - Glad you have husband, and I know you wish your family was on-board sooner, but sounds like they know you got your mom's best interest now. ((hugs))

jpStar21

Thanks everyone for your comments, suggestions & support. I greatly appreciate it. I am truly blessed that I have a supportive husband and also daughter. My daughter was my mother's caregiver for 15 years, something she willingly took on until she got married & moved away. She is flying in tomorrow night to be with my mom. I know my mom is waiting until her granddaughter is here. When I told her today that tomorrow she would see my daughter Mom's eyes teared & a smile was on her face. I am taking steps daily to meditate & do Tai Chi to center & ground myself before I am with my Mom. I did make a point of that. I told the hospice nurse that this isn't about me; it's about my Mom and seeing to it that, if at all possible, that she dies peacefully & supported. I know it makes no sense but my emotions will have to wait until later.

jfkoc

A loss such as you are experiencing is a lonely journey. Lonely and hard.

Please put yourself and your mother at the top of the care list and please, if possible, know we are by your side.

jpStar21

Thanks everyone for your support. My Mom passed peacefully Tuesday, September 26. I was by her side every day until she died. My wonderful husband took the entire week off to run errands during the day and sit with me nightly at her bedside. I managed to get my family there ahead of time. I knew she'd hang on indefinitely if they didn't do this. They all told her they'd love and miss her and, thankfully, told her they'd be OK after she was gone. My brother from North Carolina arrived the same day as my daughter. My mother rallied for their presence and spent the majority of the day awake listening to them talk to her, show pictures to hers, and tell happy stories. That was the last day she was conscious.

Every morning before I entered the nursing home to be with her I'd sit in my truck and do 20 minutes of meditation to center my Chi and my attention to the present. I managed to remain calm, uplifting and reassuring to Mom the entire time. While she was actively dying I told her, I got you, I'm supporting you, you're going to be OK. This was the hardest passing and crossing over I've ever attended to in our family. Much harder than Dad's. I was so tuned into Mom that 2 hours before she passed I saw what I can only call the Glow of God, for lack of a better word, on her face. I swear, this may sound crazy, but as I sat alone with my husband in the room with her body waiting for hospice to come, I felt a chill throughout my body as Mom's spirit crossed over.

SusanB-dil

Hi @jpStar21 - You did great! I'm so sorry for your loss. Please just take your time now and be good to yourself.

psg712

Thank you for your beautiful example of love and support for your mom till the end.

It's hard being the one who has to handle the details and tough decisions, but you did great at being there for her and including family to the extent each one could tolerate.

Blessings and peace to you in this time of grief.

mommyandme (m&m)

My thoughts are with you and yours as you process stage 8. I’m sorry for the loss of your dear mom. Thanks for sharing your life with us.

JeriLynn66

I believe you.. you were a blessing to your Mom and thankful she is at peace ❤️

calmmorn

Jpstar, I wanted to add my condolences. I was deeply moved by the image of your mother surrounded by family and so much love in her final days. I am glad that your meditative practices helped you to be so fully present for her and to let her go when she was ready.

Thank you for sharing this beautiful moment with your mother. I wish you and your family peace and rest in the days to come.