This new chapter

Grandx7

Thank you for letting me vent - I am still trying to breath!  I have not been on this site for many months and appreciate any tips you may have.

 My DH passed away almost 7 months ago.  After a brief stay in a hospital to try and get his meds stabilized, I brought him home two days before he passed, Thank God for this!  

I am trying to come to grips with my new reality and keep being bombarded with questions about how I handled things and the sadness that I was never able to have the time to talk to him about how he felt with his disease.  I have read here and other places that some patients are able to converse with their LO after learning of the diagnosis.  This was not our case.  By the time we received an accurate and complete diagnosis, he didn't want to talk about it for more than a few minutes.  He had AD, FTD and VD and from diagnosis to passing was 12 months.  As a family, we all prayed he would go quickly as he wouldn't have wanted to linger with this cruel disease.  He did tell me how sorry he was for me that I would have to take care of him and that he just wanted me to put him in a "home".  I told him I would take care of him, of course, and that was the beginning and end of our conversations regarding what was to come.

I wish I had tried harder to talk to him about his fears, concerns and feelings but I realize that he was a very proud man who took great delight and pride in taking care of me for over 44 years, as well as our children and so many in our community through his volunteering.

I know we all go through loss differently - (I have lost both of my parents, in-laws and my husband in the past 5 years) - but I just feel so very overwhelmed!  Sleep is difficult and I try to get through a day without tears.  So far, no luck.  My family and faith are a huge blessing but I have always been hard on myself and wish I could just snap out of this!  I am a retired nurse and am used to helping others.  

Thank you for any pointers and I appreciate the ability to "dump my feelings" on this site instead of my grown kids.

MaryG123

I’m so sorry for your loss Grandx7.  I think it’s normal to question your decisions, but please know that you cared for him with love and kindness.  Have you tried having a “conversation” with him and imagining what he would have said?  I’ve done this while grieving for loved ones, sometimes just in my mind, and sometimes by writing a letter.  Hugs to you. (())

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Paris20

Grandx7, I’m sorry for your loss and for the suffering you continue to experience. My husband, diagnosed with AD in 2015 and who also had a paralyzing stroke last May, has never understood that anything is wrong. I consider that a gift to him. Anosognosia has its advantages. For the caregiver spouse, however, the inability to discuss the worst of this horrible disease with the person we’ve been closest to for most of our lives generates guilt, depression, loneliness, and loss. 

Your husband apparently had some awareness of his condition. Remember, however, that what lingers in your mind did not linger long in his. Whenever any discussion could take place, the nature of dementia insures that anything gleaned and discussed after diagnosis is soon forgotten. We feel helpless and try to second-guess the way we handled everything.

Please don’t beat yourself up over this grievous loss. It sounds like you might benefit from talking your concerns through with a counselor, whether that be faith-based or a professional therapist. The final stage of grief is acceptance. Be patient with yourself to reach that point. We all grieve differently but now it’s time to take care of you. Good luck.

Sligo177

Grandx7,

I echo what others have said, and hope you realize the great things you did for your DH.  I also find sleep difficult, and I cry, too.  (My DH is in MC, probably stage 6).  What helps me is that I did see my primary care provider and she has given me support, and I also talk to a therapist we met through the memory care center.  I don't know if you've seen your primary lately, but if you can, it's important.  Your lack of sleep can make everything harder.   You did an awesome job caring for your DH.  And I know the feeling of second-guessing decisions you made.  I don't know how we stop doing that to ourselves.  It's because we love them.  But, you need to care for yourself now.  Reach out to your Doc if that makes sense, and to us too.  Best wishes and bless you. 

toolbeltexpert

Grandx sorry for your loss,  you did a great job, that's is good you got to have him home. One minute at a time seems like all we can muster at times, and tears fall like rain. Praying for you that your sleep better.

Joydean

GrandX, you have gone through a number of losses in a short period of time. Your heart is broken for all those people you loved. Please focus on the fact your husband didn’t have to go through so many stages of this horrible disease. You know you were there with him through the good times and bad times. He knew how much you loved him and how much he loved you. Hold onto that love and let him still comfort your heart. Prayers for you and hugs. It’s okay to cry but you know he would not want you to forget about your self.

Ed1937

I'm sorry you have to deal with a loss like this. Like you, I lost my brother and my sister during the last 6 years or so. We also lost a son in 1998. But losing my wife eight months ago seems the hardest for me. Maybe because it is most recent, I don't know. I'm still having my days, but I'm getting there. 

But you and I have to move on, one way or another. I hope you can keep in mind that you did your best for him. It's all you could possibly do, and he couldn't have asked for more than that. If you would benefit from counseling, please consider it. I promise it will get better with time. It always does. Post whenever you feel like it. We're always here for you.

Grandx7

Thank you to all who have responded to my post back in February.   I am so appreciative and thankful for all of your responses!  I am remiss in my acknowledging all of the kind, helpful words.  I greatly appreciate all of your input and will take all to heart.  I have spoken to my primary MD, talked with a counselor, am in close contact with my priest and lovely nun who is also a close family friend, and have a close family and very good friends.  I have been very sporadic with getting on this site since my husband started having rapid changes - Last April 2022 - because I was struggling to breath and couldn't take in more information at that time.   Even with all of the wonderful people I have available, none have had their spouse go through what all of us are or have gone through.  This is a wonderful resource that I wish I had utilized more frequently.  There is nothing like speaking to those who have "walked a mile in my shoes".  One of my daily devotions that I read shortly after my LO passed was to find 5 things a day that I am thankful for.  Some days I need to remember to do this as it does help!

I read somewhere today that Bruce Willis' wife said how difficult it is to acknowledge birthdays and anniversaries because her husband probably wouldn't remember or be able to process them - or something along those lines.  I felt this exact same way and for my 2022 birthday and anniversary or any special occasion, I asked our kids not to bring it up as it would be too confusing for my LO and I didn't want him to get upset or more confused.  What a painful and difficult journey dementia dishes out!

Unlike a year ago, I am able to complete tasks when I choose and go for a walk or drive without worrying about his safety.  Again, thank you to all of you who kindly responded.  As always, I am much too verbose.  My kids appreciate this site so I have another safe place to vent.  Prayers and my best to all of you!