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Feeling confused and overwhelmed
Posted: Thursday, August 28, 2014 11:15 AM
Joined: 8/27/2012
Posts: 61

My mom passed away on Sunday morning, August 17th around 6am. It was expected, but it wasn't. Somehow this entire Alzheimer's thing has felt like a horribly long nightmare. I kept feeling like I could control things by making the right decisions: change doctors, read and research, move my parents to live with me, make modifications to our home, schedule, lifestyle, outlook...always trying to hold on to everything that was slipping away and refusing to stop long enough to adjust. Adjusting would mean surrender, surrender means defeat, and defeat means I'd lose my mom. My best friend, my role model, my everything. Even after we switched to in-home hospice, and the hospice team sent a social worker to the house to help me "understand" the dying didn't sink in. Even when mom stopped eating and drinking, needed oxygen to properly breath, even as I administered morphine every 2 hours....I still had hope. Hope for what I'm not sure, but I had it and it was strong enough to keep me going under a veil of fantasy. When I went to give mom her dose of morphine she was gone, but I didn't trust myself to know. Dad woke up and I told him what I thought, he checked and confirmed. I left the room to call hospice and when I returned dad had taken her oxygen tube off - I freaked out because perhaps we were wrong. Perhaps everything was wrong and this horrible disease wasn't even real. Perhaps I'd wake up and have the life I had before mom was showing signs of Alzheimer's

I got through the funeral decisions and service focusing on my dad, my daughter, my nieces and nephew, and visiting family. Visiting family left, the kids all started school, and I sent my dad to stay with my uncle for a bit of a break. I said I'd go through mom's closet and move things around to make it easier for dad to return. I'd donate mom's wheelchair and transfer bench and remove memories of illness from the house. But, in the 4 days since I sent dad to visit my uncle I've gone in the room less than 4 times. The silence is too painful. The emptiness is too much. I know I have to go in there and take care of things because dad won't be strong enough to do it, and I don't want to lose him too.I know I'm leaving to pick him up tomorrow and I need to have all of this done before we get back. I just can't. I miss my mom. I miss her like I've missed her for the better part of the last decade - it's just more final now. Now that she is gone I know that I'll never have her back and it's like I'm realizing all over again how evil and disgusting Alzheimer's is. Then I feel guilty - I know mom was sick of all of this sh*t. Sick of not being able to express herself, enjoy herself. Sick of the confusion, immobility. Sick of all of it. Her decline was fast, and that's probably a sign that she was more than ready. I feel guilty because I don't just miss mom before she was sick. I just miss mom. I miss having her here with me even though she couldn't participate in anything. I miss seeing her even though she hasn't known who I am in years. I miss feeling strong in her presence, even though she lacked the strength and ability to tend to her basic needs.  And, I feel guilty for wanting her to remain here, in that state, just because I wanted her to. I feel guilty for escaping to a fantasy world where I never fully accepted her illness, where I held onto some small shred of hope that there would be another way out. I feel guilty for feeling so alone, even with my husband and daughter present. I feel like I should have become used to this, given mom's state for the last several years. I question the meaning of life and living. I question every decision I've made since I knew my mom was sick. I wonder what;s beyond this tremendous feeling of loss. Will it ever go away?

Posted: Thursday, August 28, 2014 12:46 PM
Joined: 12/5/2011
Posts: 795

Dear Aisha,


I'm very sorry for the loss of your Mom.  I know it is very difficult now.


Perhaps you can get someone to help you go through your Mom's things so you don't have to face it alone.  Friends and family can really help!


I know you loved your Mom as much as I loved mine.  I lost her almost 4 years ago.  I still miss her but know she is in a better place. 


Please, let people help you.  You do not have to do this alone.  Like you, my Father was devastated but I had my daughter and sister to help me.


Let the tears flow.  It's ok.  You need to grieve.  I know I did.


You might try going to a support group for people who have lost loved ones.


Hang in there.  My thoughts and prayers are with you and your family.


Remember, your Mom is fine now.  She's at peace.


Peace and Hope,


Posted: Thursday, August 28, 2014 1:08 PM
Joined: 11/30/2011
Posts: 2105



I am very sorry for the loss of your mother.  Losing a mom and dad is very hard, they knew us the longest, all of our shared history, they were the people we depended on while growing up.


After my mom died, we sent my dad to stay with my uncle for a week.  During that time, my dad wanted us to clear my mom's room.  It was hard, we were trying to come to terms with my mom's death ourselves and it was too soon to do this task, but we did it.  I had my sibling helping.  I would say, not to do this alone but have someone help you.  Just move the necessary things to make more space for your dad.  He'll have to understand that it's going to take more time to do.


It's all very normal to question ourselves about the decisions we had to make on behalf of someone else who couldn't make those decisions.  It's a huge responsibility, one that many of us don't ever want to have to do.  But we do because we love and care for them.  Surprisingly, I think under all the stress and struggles, we made the best choices we could at the time to the best of our ability.


I went to the cemetery every day for a month after my mom passed away, always asking, why did you have to leave me?  It's not selfish, we know the reasons why they had to leave, but it hurts so much to be separated from the person you love.  It's normal to feel this way.


Your mom's death was so very recent.  Please don't expect so much out of yourself right now, you don't have to resolve everything right now, you don't have to move on right now.  It takes time, lots of it.  It is a process, we hear that over and over and it is very true.  The length of time is individual.  There is no set way to grieve, no timeframe.


As far as accepting this loss, this disease.  We all live in an altered stated to some degree, there's no way any of us can absorb all of this at one time, it would be too harsh and I'm not sure we could even function if we didn't keep some hope somewhere in our minds and hearts.  We gradually see it for what it is as times goes by, but all at once, no, I don't think that's humanly possible.


I found it helpful to speak with a counselor regarding my grief after my dad passed away.  I took care of him for 13 years and I wasn't prepared to let him go even though I knew it was coming.  Finding someone to help guide you through this process and have someone objective to talk to, is very helpful.  I hope you'll be able to look into that for yourself.


Don't push yourself, you can only do what you can do.  You've had a big loss, you need to make time to grieve.  Your dad will understand, he's grieving, too.

Posted: Sunday, August 31, 2014 3:55 PM
Joined: 4/1/2014
Posts: 5190

Aisha-I am so sorry for your loss. You spoke beautifully of your love for your mother. I know you miss her and hope your grief will be a catharsis for you and you can begin a new stage in your life. Love never dies-love lives in the heart and there it stays always. Best to you and your family.
Posted: Monday, September 1, 2014 2:29 PM
Joined: 2/14/2014
Posts: 749

I am so very sorry, Aisha.  Please be gentle with yourself and know that it will not always hurt like it is now.
Posted: Tuesday, September 2, 2014 11:10 AM
Joined: 8/27/2012
Posts: 61

Thank you all for your kind, suportive words!
Posted: Sunday, September 28, 2014 2:04 AM
Joined: 9/29/2012
Posts: 15

Dear Aisha,

First I want to say that I am so very sorry for your loss, I completely understand, eveyrthing you are feeling, and were feeling, as I too had all of the same feelings.

As I was reading your post, I began to think that it was something I wrote, word for word.  I too lost my Best Friend, my Strenght, my everything.  I was in complete denial about my mom's dementia, as was my daughter.  My Beautiful mom always knew who we were and me and my daughter used to say that she did not have this disease.  My mom was in a Nursing Home, which I regret, like you for 5 years, her last fall at home could have ended her life and she had been in this nursing home, several times before for Physical Therapy, but I always took her back home.  

This time was different, mom seemned happy there, got lot's of attention and love and never once asked, like before, when she was going home, so I decided what ever is best for her safety and happiness, is worth all the money in the world and it did take all of that, but I didn't care, I just wanted her to be safe and happy.

I had Power of attourney for my mom, I controlled everything that I could, with the exception of this horrible disease, which I was in denial of, like yourself, I too had strenght from my mom, a strenght so strong it cannot be measured, just knowing that I would be there with her everynight after work, bring her something to eat and talk with her, just like you felt, just knowing your mom was there in her room, gave you strenght and hope, even though our mom's were suffering inside, as long as they were with us, we never gave up hope that somehow, they would never leave, never, that this horrible disease would go away, "Somehow" we could do something to make that happen and I truly believed it, with all my heart.

I lost my Best Friend, my Strenght, half my heart 2years ago this coming October 7th, she was sent to a Hospice Center, because the hospice at the nursing home was not able to control her aggitation and pain, I have been saying what if's for the past 2 years, I shouldn't have let her go there, I should have had another hospice go to the nursing home, they feed mom before she left and she told them to slow down, what if she wasn't ready to be put in an induced coma, I know that she no longer would take her meds and as I was told, would not eat anymore, yet when I went she ate some of what I brought her.  We are just tearing ourself apart, thinking what if I did things different, what if I and so on and on, until you realize you cannot change anything, this disease takes it's course and their is not a darn thing that would have changed it's course.  I am still in denial that she had this disease.

It took me quite some time to go through my moms things, my daughter and I had moved from our home to an apartment, so I did not bring too much with me.  Take your time doing this, be gentle with yourself, your mom is watching over you, you may not believe it now, but you will see.  It is a good idea to donate her wheelchair and other medical Supplies, perhaps you could have the Hospice CNA come and pick them up all at one time.  As for her personal belongings, clothing, ect, just move them to one side of the closet, toward the end, so that your dad cannot see them and this will give you the time you need, before doing anything with them.

Now it is time for you to grieve, I still am especially at this time of year, I look back on my notes, she went into hospice on 9/27/12, so really I am relieving it in my mind.  I no longer have the strenght and courage that I used to have, I am a different person without her, you learn to go on with life without even realizing that it is happening, it takes a lot of time, but one day you will say, I am getting on with my life, I never in a million years thought that I would, but we do, however we have to adjust to a new us a different us, many things in life can change who we are, but loosing our Mom's our Best friends, our Strenght our Courage, is one of the biggest us changes that we have to learn how to become a new person and live out lives like our moms would want us to.

Bless you may peace and strenght come into your heart, mind and soul and don't forget, she is still with you, you may not feel it now, but in time you will

Posted: Sunday, February 22, 2015 1:26 PM
Joined: 12/30/2014
Posts: 4


Our stories are so similiar it's eerie. You are a little less then 6 months out from your post was written, I am where you were then.

My mother passed away a week ago today.

I hope you are more at peace now.

Posted: Monday, February 23, 2015 5:30 AM
Joined: 2/23/2015
Posts: 8

I am sorry for your loss but as we know there are no words to ease the pain. Only time does that. My Mom transitioned in her sleep in January, 2009. She was still active and very coherent at age 82. She still drove herself and mowed her own yard. She went just like she had prayed she would and the peace and smile on her face when we found her was remarkable. My husband transitioned in September, 2009. He had Alzheimer's and Parkinson's. He spent years too afraid to live and too afraid to die. However three weeks before he transitioned he saw into Heaven and couldn't believe the Love. His last words to me were:" Hurry honey I see the Light I have to go" He told all of our family bye and then went into a coma until his nephew returned two days later.

He and my Mom have made their presence known since their transition to make sure I am fine. I have also let them go to their best and highest outcome. Since doing this, I only have to think of them to feel their presence around me. I do miss them but have moved to acceptance of the experience we went through and know we are still connected,.