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Three Months Since Her Death
Posted: Monday, April 1, 2019 7:11 PM
Joined: 3/8/2016
Posts: 3

I am trying to sort things out. I have forged forward for the years since her diagnosis and even since her death, I have had to continue to make arrangements, to support others, to be a presence at work, to do the paperwork...when my conscience starts to tell me "it is time to grieve", the sting is too much. Regrets and invading thoughts paralyze me making me wonder if I did all I could for her.
The symptoms of her diagnosis of Alzheimer's was so different than what I saw in everyone else's. However, with each ED visit and CT, the results and interpretations seem to be the same and lead the doctors to the same conclusion: Alzheimer's. Should I have taken her to more than one neurologist? The fact that I didn't, does that mean I really didn't do all I could have? I was not the one who had the legal authority. Distance made it hard. There were obstacles in her "early" stages posed by her that prevented movement otherwise. Did I not do enough to fight for her best care? 

Then there are the lost dreams of seeing her through this in my home, the imaginations that she felt abandoned when I could not, nor was I allowed to care for her for various reasons out of my control. How hard that must have been if she was conscious of it for even a minute, to think that the ones she loved/ wanted to be with didn't care enough to be around 24/7.

I miss her. My heart aches for her. I told her all I could as I curled up in bed with her so many times. She couldn't respond fully, but there were times she tried to reassure me. The void of not having her in my life to even hug is so hard. Though my story is not unusual, the lack of others initiation to take time to talk about it, ask about it, understand it(when they full well know), makes it all feel so isolated. 

I have tried to talk with counselors. I have to continue to trudge forward, forge, as there is another who is declining rapidly that needs me. No time to grieve her. Will it come? Was it done in the years when we knew we were losing her? Will it all come with the loss of the two? Or will I just move on as if she didn't have an impact on my life, because life has to be lived and there are things to do?

I am away. I am away to take the time to do this business called grieving. To try to get perspective and "reset" ; to deal with it if it needs to be dealt with, but then to understand how I move on from here.

I guess I am rambling. I feel that this might be helpful in healing/ grieving, to put my thoughts down (as jumbled as they are) in a forum where others are dealing with this awful disease that is such a thief.

Posted: Tuesday, April 2, 2019 9:45 AM
Joined: 12/16/2013
Posts: 352


My wife passed away a little over 3 years ago and I have asked myself the same "what if's". I think that it's natural. A brief quote:

"Grief never ends...but it changes. It's a passage, not a place to stay. Grief is not a sign of weakness nor a lack of faith...It is the price of love."

Stay strong.

Posted: Tuesday, April 2, 2019 10:50 AM
Joined: 5/14/2018
Posts: 256


I went through this in my head for months after my mom passed.  I think that is a normal process.  If you loved them and were there for them as often as you could be, you did enough. Please rest your mind. Allow yourself to grieve their loss. Don't waste your time on the what ifs, it will drive you insane......  speaking from experience here.

Wishing you peace..... Kat

Posted: Tuesday, April 2, 2019 3:07 PM
Joined: 1/17/2016
Posts: 939

Kat's response is spot on.  If you loved enough and cared enough, then you have done enough.  Your post says "Regrets and invading thoughts paralyze me making me wonder if I did all I could for her."

If this continues, I will say it may be time for an anti-depressant.  Counseling can only do so much and it's good to talk about it, but there comes a point when yes it is time to move on.  I always allow myself to obsess about things for specific amounts of time as I know that is my nature.

Car trouble = no more than half a day, kid's issues = perhaps a day, with death (depending on who) I have allowed it to run it's course.  When your thought process effects your day to day living, something has to change.  The only reason I bring this up is because you wrote what you wrote and also, I tend to have ruminating thoughts that I have to deal with.  Wishing you peace.

Last Dance
Posted: Wednesday, April 3, 2019 8:12 PM
Joined: 5/2/2013
Posts: 450

A NEW Journey to what? 

 Another lonely day, and lonelier nights, coming home to an empty house, and no one to share your day with.

In June it will be 2 years since Linda left me, and there is not a day that goes by that I don’t miss her or think about her. 

I can feel your pain and heart ache. In my humble opinion when you lose someone to Alzheimer’s it is the worst loss that a person can have. I try to busy myself with a part time job, helping out with the Alzheimer’s association, helping out with my great grandchildren, and while this helps it doesn’t take the pain away. I don’t think it will ever go away, but hopefully some day, I  will be able to live with it. I want to talk about Linda over and over again but unfortunately after a while people just don’t want to hear about it, so I just don’t bring up the subject and if they ask me how am I doing, I just say, OK because I know that they really don’t want to hear about what I am feeling, I know that this doesn’t help you or answer your questions, but I want you to know I feel your pain and understand exactly how you feel. 

Posted: Thursday, April 4, 2019 5:50 PM
Joined: 3/8/2016
Posts: 3

Thank you for your advice from experience. This is the first real significant loss that I have had. The words you are telling me are probably ones that I would offer to another, but living through it has been a different ball game. Difficult in not thinking of her everyday or multiple times a day. I will try to refrain from the what-ifs, but it is nice to know that it is the common response at this point in the grieving process.

It is good to have the support of others who "have been there", understanding the devastation that is unique to this disease. Thank you all for your support and your understanding.

I pray for each of you that has responded, knowing the pain and loss. I hope to someday be in the position of encouraging and supporting as you are doing for me right now.

Posted: Thursday, April 4, 2019 8:53 PM
Joined: 7/28/2017
Posts: 176

Hi Journey,

This site and its members have provided me tremendous comfort; I hope you find at least some from the people who rally around understanding. The "What Ifs" are definitely difficult if not impossible to process: my family has struggled with them since my Mom went from delirium to full-blown dementia in such a short time.  I don't even have the courage to share more about her particulars: only to tell you that I've hardly ever read a post where someone felt closure and peace. It's one of the cruelties of the disease of dementia, no matter the form or diagnosis (or lack thereof). 

I understand your pain and missing: I feel it too. I'm sorry. You're not alone. You can always come here and post and trust in the good hearts and shared experience and understanding of others here. 

Wishing you peace and comfort, Journey.


Posted: Friday, April 5, 2019 10:57 AM
Joined: 2/26/2019
Posts: 172

A new journey---i read thru your post and my heart welled up with sorrow for ur wife AND u! U hav a family here to listen to you all along your new journey! 

Does your city hav a hospice program? My local hospice offers GRIEF SUPPORT GROUPS that REALLY HELPED me deal with my dads passing.

Lastly, reverse the circumstances--you were in ur wife's shoes, and how would u feel about her care for u?

Posted: Saturday, April 6, 2019 8:43 PM
Joined: 3/8/2016
Posts: 3

I am trying to reply to each comment individually, but seem to be inept at it. If anyone can tell me how, I would appreciate it.

Vik, Ukie, Skittles 412, Rockym, Last Dance, AmyJo5...Thank you for taking the time to read my post and to respond. It is more than many any have done. I can't blame others for not knowing how to respond to me. They have not had to live for so long with this horrible disease that results in what we have all experienced. People have moved on, and as you have all agreed, really aren't interested in how I really am. I am grateful for the community that understands.

My name was that which I chose with the diagnosis in 2016. I knew it was going to be a painful journey that needed to be compassionate and purposeful. I did what I could to prepare myself for the new journey of watching my loved one leave who she once was, but boy....I thought that there was so much grieving done from 2016-19 that there couldn't possibly be more, especially when the end had so much suffering on both sides. I am glad she is not suffering. And the suffering experienced by myself has changed, but it is not gone, is it? Grief is a new suffering wouldn't you say.

I look to work. I look to activity. I try to motivate myself into getting into an old hobby that I once loved (to distract or help the sting), but what I find is that a day can pass, and another, with lots of thoughts, lots of picture looking, remembering, missing...nothing to really show for a day. But that is truly the risk that we take when we love another human being, isn't it. So, would I want it any other way.

I am way too impatient with myself in other ways. So, I must realize that I need to be patient, and with your insightful voices and support, some of the pain (mental and emotional, and, yes, sometimes physical) will pass, and I will be able to remember her always but with less of the pain. I must not cause myself more pain by putting expectations on others in my life to respond as I would like them to. (That is a self inflicting pain that I am apt to bring on myself) Instead, I can turn to you, and I hope that I can offer support for you all, as we walk this together.

Blessings and thanks to you all.

Posted: Tuesday, April 9, 2019 9:07 PM
Joined: 7/28/2017
Posts: 176

It sounds as if we lost our Moms around the same time (for me, November 27). My mom's "path" was equally confusing and fit no pattern I've heard from others.  Grief IS a new suffering and it has morphed and changed since she died. I've had a couple "not crippling" days this ways, which is a plus, but super high anxiety.  We really do have to be compassionate with ourselves now. I give myself points every day for showing up (to work, gym, food shopping, all the daily routines). I'll be continuing to follow your journey, Journey.
jb crick
Posted: Friday, October 11, 2019 10:25 PM
Joined: 8/2/2016
Posts: 632

ANewJourney16 wrote:
...Thank you for taking the time to read my post and to respond. It is more than many any have done. I can't blame others for not knowing how to respond to me.

There are many more of us who could respond, but don't perhaps because most likely someone has already touched on what we would have added to the dialogue, myself included. But because we remain silent, it doesn't mean we don't care, because we do, we all do. For those of us who has lost a loved on, we understand your grief deeply. And although we may not say it, I assure you, you are in our prayers. We are here to support you, listen to you and grieve with you.

You mentioned that you are only a couple months from your mother's passing. Was she in hospice care? I ask because hospice offers grief counseling for all family members. In my case, when my wife passed, the hospice organization here offered my son grief counseling. Even though he lived over 100 miles away, they provided him access to a hospice organization in his city.

Perhaps this is available to you as well. In my area they offered about 6-8 instructive classes on the grieving steps as well as one-on-one counseling. As I progressed through the classes, they offered me the opportunity to join a small group of about 8 people that met weekly for a couple months. And hospice offers these services to the family for up to a year.

Not everyone in my group lost someone to Alzheimer's, some suffered form other terminal diseases. But we all got to share our feelings, our thoughts, and our support for each other. In short, we all trudged forward together. And from your writings, this my be a much needed benefit to you as well.

I don't know if there is a "reset" as you put it. As I had it explained to me, grief is not something you get past, it is a journey you move through; it will take time. Be patient my friend. May the God of peace and love delight to be with and bless you.