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Grief and Guilt
GlendaGW
Posted: Thursday, May 21, 2020 12:23 PM
Joined: 5/21/2020
Posts: 4


My DH of 30 years died on May 4. I have been mourning him since I had to move him to a care home last August. Now, it's just more final and I'm thinking about the times I so wish I had been more understanding and helpful. This is such a horrid disease for everyone concerned. 

I am having a Zoom memorial for him on Sunday, expecting people to join from 9 time zones. I hope it will lift me up a bit. I fear that next week the loneliness will set in seriously. How I wish I could meet with friends and hug.

Family is all at a distance and no children. I need to learn how to cope. Even without this, what a lonely time we are in.


TessC
Posted: Thursday, May 21, 2020 2:25 PM
Joined: 4/1/2014
Posts: 5135


I am very sorry for the loss of your dear husband. Is that a photo of him? Thank you for sharing it.

 I hope the Zoom memorial will go well. Is the funeral home facilitating it?  My mom died last October and when I think about the lovely service she prepaid for and if she had died now, it would not have happened and I get very sad-so I know how you feel.

Your subject line said you felt guilt and I read your bio. Please don't second guess yourself. You did what you had to do at each stage of the disease process and you did the best you could. We always say caregivers cannot go down the tubes too or we wouldn't  be of help to our LOs. Your husband had a brain disease for which there is no cure. One that you did not cause. All the indignities he suffered was caused by the disease.

 Sending you hugs and wishes for healing. Please come here as often as you need to. We understand and support you. Please take care and God Bless you and your dear husband.


GlendaGW
Posted: Saturday, May 23, 2020 7:15 AM
Joined: 5/21/2020
Posts: 4


Thank you for writing. Yes, the picture is of my DH, taken about 30 years ago. Intellectually, I know everything you say is true. I know much of what happened between us was due to the disease. I know he is in a better place. It's just that when I'm lonely, my mind goes to things I wish I could redo.
TessC
Posted: Saturday, May 23, 2020 2:06 PM
Joined: 4/1/2014
Posts: 5135


I understand your feelings as I have them too. I let the guilt pass through me and not dwell on it because I know it is just human nature to feel them, especially for someone as empathetic as me. Maybe you are that way, too. I now sleep in the same room my mom lived and died in and just about every night I think about her suffering in that room. I tried to change everything in the room, but still I think of her-mostly the bad that happened-but I try to replace them with the good memories-and there were plenty.  Hopefully the bad will recede and will be replaced with nothing but the good. Hang in there!
star26
Posted: Tuesday, May 26, 2020 12:14 AM
Joined: 2/6/2018
Posts: 364


Hi Glenda, Unfortunately I don't have anything helpful to say about the guilt and regret feelings but I did want to tell you that you're not alone in your feelings. And it's helpful to me to know others have regrets too. My grief is still very new, March 14, and I am currently trying not to entertain those thoughts because they will take me down with overwhelming pain. They come in but I try to let them flow back out. I don't know if this is right or not. My sense is that I will be able to look at those things when my pain is not so raw and I will be able to see them with proper perspective. I feel my father's spirit with me and I told him how I felt about some regrets a few times (I did this through journaling and also just speaking to him in my head) and because I can feel him so strongly, he answered me. And this was helpful. But the train of regrets don't stop coming through my head. I think we need to be kind to ourselves right now by letting those thoughts flow back out again without our minds latching on to them. And then we can acknowledge our pain and all that we have been through on this dementia journey and do whatever we can do to bring a little peace to ourselves. Thank you for posting your feelings about this.
ladyzetta
Posted: Tuesday, May 26, 2020 11:58 AM
Joined: 2/16/2017
Posts: 835


My DH has been gone for 2 years now and I still feel some guilt that I was not able to keep him home for the whole journey. The grief  has pretty much faded, my DHs spirit is still here and I feel that, but I guess guilt takes longer. I know I did the best I could for him I guess I will always wish I did more. Like Tess said it is human nature to feel guilt. Hugs Zetta
Lady Jane Pearl
Posted: Wednesday, June 3, 2020 10:15 AM
Joined: 6/3/2020
Posts: 2


I just joined today. I am suffering with the guilt. I took care of my mother for 5 years in my home. Also have my father here, who has too many medical issues that he could not take care of her on his own. We, 5 siblings,  did pressure my Dad that it was time for more help for my mother. I had taken a leave of absence from work so I could be home more with her. She was going to day care and eventually that became a battle and my Dad would call me at work wanting me to come home because he couldn't get her to get out of the car at day care. So it was easier for me just to stay home and get her than when she was willing to go. He and I got a lot of pressure from family to put her in an institution. I wanted her home until the end. It turned out that was not going to be possible for her safety as well as mine and my Dad's. So we got a call from our 2nd choice facility and decided to put her in. We were hoping to have a few more months, but the openings don't happen that often and we had to take that one. We were not happy with the care. The stress was just as bad if not worse. Dad was there every day and I was there 3-5 days plus on the phone every day dealing with things Dad found that he didn't like. I had 2 sisters and 1 brother that would go 1 or 2 days a week to help her at supper time. So we took her out in November. She was good for a couple weeks and than the evil side took over again. We had to call an ambulance. She went from one hospital to another and than finally to a different nursing home. At that point she was unrecognizable. So many drugs they used. It destroyed her. By the time we got her off those drugs, it was too late. The damage was done. It was extremely painful watching her the last weeks suffer so bad. I take on that guilt. If I, with my father, did not call the ambulance that night and tried a little harder with her, she might still be here. But than my mind knows we couldn't continue the way it was. But maybe the end could have been more peaceful for her had we kept her home.    My mind and everyone else tells me I did all I could, but my heart can't let it go. She was the most loving, gentle, fun person I have ever known and this disease made her into a monster, that I loved with all my heart. At one point I started calling her Lady Jane. She was no longer my mother. I can't even look at pictures from the last 2 years without tears and guilt and WHY her.

 


TessC
Posted: Wednesday, June 3, 2020 1:22 PM
Joined: 4/1/2014
Posts: 5135


@ Lady Jane Pearl, I'm sorry you have lost your dear mother. Thank you for sharing your story with us. You said you are suffering from guilt, so I hope you don't mind me offering you some words of comfort.

 Dementia is a devastating illness, taking away so much of the person we love over a long period of time.  It's easy to have guilt because of the "what ifs", but it's not helpful for us to live with it for too long. How long has your mother been gone? The hollow, deep heartache I felt for my mom's passing is just now stating to abate a bit-8 months later. Please don't mistake that ache of loss with feelings of guilt.

I made plenty of mistakes while my mom lived with me and DH for almost 15 years and there is a lot I should feel guilty about, but I don't because I know I did the best I could at the time and also because I know my mother has forgiven me for my shortcomings, errors and mistakes. How could she, in the presence of my Lord, harbor anything but love for me now? I never stopped loving her, even when I was short with her or did something wrong. Acts of love should not come with guilt.

 I know you feel bad that your call that night placed your mother in hospitals where she was  medicated and that appeared to destroy her. My mom was destroyed by the disease progression and she never went to a hospital. Her last weeks while dying at home was painful as well. There is no getting around that it seems.

  It sounds like you did the best you could and you loved your mother-let that be the legacy of your caregiving days and banish guilt from your heart. It does not belong in the heart of a child who has taken care of their parent in their greatest time of need.

 I hope being here will bring you comfort. We all understand the lasting effects caregiving someone with dementia brings. Many are still here years after their LO died because it take time to heal from the many losses we experience taking care of someone with dementia. Best to you!


Lady Jane Pearl
Posted: Friday, June 5, 2020 5:24 PM
Joined: 6/3/2020
Posts: 2


Thank you for your kind words. My mother passed away in February, so it is still new. Although almost 4 months. It doesn't seem that long. You did help me think of things in a new light. I will remember what you said when I am beating myself up with thoughts of should haves and that will help me push it away and remember the really great times I had with her while she lived with me and well before.
TessC
Posted: Friday, June 5, 2020 10:17 PM
Joined: 4/1/2014
Posts: 5135


I'm glad you had many good times with your mother. Is that a picture of you and your mother on a pontoon boat? I took my mom out on a pontoon many times. She loved it and in the beginning, she even swam in the lake! She always said it reminded her of where she grew up. I try very hard to think of our good times and there are plenty. It's only been 4 months for you, so the loss is still very raw. Take good care!
TessC
Posted: Friday, June 5, 2020 10:21 PM
Joined: 4/1/2014
Posts: 5135


@GlendaGW, how are you doing? How was the Zoom memorial? I know it was no consolation for an actual in person gathering, but I hope you were able to see how much your friends and family care about you and your late husband.

There is so much to do after a LO passes away. I hope you are getting help and taking your time. Best wishes and take care!