I have no desire for this life without him

Discussion in 'Life After Caregiving' started by Heartbroken Patti, Jun 20, 2019.

  1. Heartbroken Patti

    Heartbroken Patti New Member

    Please bear with me if I ramble, I am not good at writing my thoughts these days. I lost my husband of 33 years on 2/22/19. He died from severe dementia (Lewy Body Dementia), which is a horrible disease. We had home hospice for him so he could pass at home which was his wish. On 2/10, we had to rush him to the ER at Johns Hopkins because he had developed a blood clot in his leg and had to be hospitalized. They were able to save him and his leg. I was so happy as I thought he was out of the woods and I could bring him home and he would regain some of his health. On 2/14, the doctors sat me down and told me he was terminal with weeks to a few months left to live. John was brought home for hospice on 2/18, and from that time on he quickly deteriorated. He passed on 2/22/19 at 4:23 am. The type of dementia (LBD) he had would attack so many things in the brain at once, then again and again. My husband suffered from dementia and AVM with frequent seizures for some years, but beginning October 2018, he could no longer be left alone for his safety. My adult son & daughter and I took shifts caring for him 24/7. His deterioration was not gradual, it was more like stair steps downward. That disease robbed him of his mind, his mobility, his life. The darkest days were right before he passed, within one week he went from talking to not, then deteriorated down to no longer being able to swallow, etc.... It was the hardest thing I have ever done in my life having to watch the father of my children, my husband, my best friend die. Since then, I honestly don't have desire for life. I go to work and then come home, sit in my room and look at his pictures. I am not suicidal or anything like that, but I don't have interest in this life without John.
  2. griefic

    griefic Administrator Staff Member

    Patti, I am so very sorry for your loss. It is so traumatic to watch a loved one deteriorate, and it sounds like your spouse had a particularly horrible disease. I am familiar with lewy body and it so very difficult to manage. There is so much to do and so much to process, but no time to do that while it's all happening. I understand the desire not to live a life without a loved one in it and I totally understand that it doesn't mean you're suicidal. But the pain can be so great, it is that we wish to disappear. You have been through a lot. Even as I type it, I realize that's an understatement, and it will take time. More time than you could ever expect. Not just to adjust and adapt to a life without your spouse and friend but to process all that has happened and the trauma of all you have gone through. Support can help and I'm so glad you are reaching out. If you are looking to interact with others, it's always a good idea to comment in existing forums - people always seem to get a good response when they do that. I'm glad you've shared your story with us and I truly hope this site can give you some comfort. We are here to help~
  3. Susangregory

    Susangregory New Member

    Hi, Patti,
    I’m so sorry for what you are going through. I’m just finding this sight. My husband of nearly 40 years died May 14. He had Parkinson’s. He also had dementia. They call it Parkinson’s disease dementia. I’m just really in a state of confusion and extreme grief. Hoping to connect with others to glean ideas of how to get through this. Don’t know what to say except I think I know a little bit about how you feel.
  4. Heartbroken Patti

    Heartbroken Patti New Member

    Hi Susan, I am so sorry for your loss. Just take one day at a time and try to take care of yourself. Your confusion will eventually get a little better, but the grief will stay for a long time. Yesterday, the 28th was my husband's birthday and this ripped the scab off for me. I was a mess but today I am a little better. I think the holidays are going to be quite hard also. Its been 4 months since I lost him and I am noticing that with time, it's not getting easier for me, it's getting harder with the loneliness and missing him. Maybe this will change with more time, I don't know. I still have his hospice room set up and I find myself sitting in the chair next to his empty bed. I just long to be near him. Please take care and I will pray for you.
  5. Sheila512

    Sheila512 Well-Known Member

    To all who lost a loved one to movement disorder like PD or Lewy Body. We witnessed our loves deteriorate before our eyes and were helpless. We are left with a grand canyon size void and enormous pain. I have been trying for the past 2 1/2 years to honor his memory, dedicate time to his favorite activities, work part time and keep occupied. Well, it’s not working and I am so tired of trying to keep on keepin’ on. I cry a lot and it decreases tension for a while. I don’t know the next chapter because all of my plans were our plans snd I am no longer an “our.” I hate my life and actually have no desire to keep trying. I am considering finally retiring ( it will be my 3rd time) and just vegging out. My sister is ill and I see her daily so I will continue to be mindlessly busy. I don’t want to be one if those people who grieve forever, but it sure likes I’m headed that way. Thank you all. I know you are there. Sheila
    JoNas likes this.
  6. riverinohio

    riverinohio Active Member

    I am sorry for your pain. Anyone that has had to watch a loved one go through Alzheimer's, Parkinson's or any deteriorating illness makes it harder. You are constantly grieving even though the person is still around. Once they are gone it's like an overwhelming sadness that they went through what they went through. I was a caregiver for my dad for seven years and was by his side every step of the way and to see him slowly fade away was beyond heartbreaking. I have cried everyday for the last 12 years. I will always grieve for what should have been. One thing that is helping me a little is that I am thinking of what my dad would want for me. That is what pushes me forward. He wouldn't want me to give up although the thought has crossed my mind many many times.
    JoNas and KB3 like this.
  7. paul tinker

    paul tinker Well-Known Member

    Patti my sister is Pat as well. Her partner had ALS and they did it from home. She was my role model for what was to become my wife's long struggle with cancer. We all agree about the hardest thing we have ever done. The hours, the not knowing what to do (Thankyou Hospice) I have donated to them with gratitude. Now the quiet. Now the constant doing for to much time. Or at least time we are not used to filling. Now the remembering and what items we keep for their memory or really ours and the want to hold on to them. To any and all who went this road it is a great service to our loved ones.
  8. Hi Susan, I too lost my husband after 24 years of Parkinsons, I totally took care of him his last nine years, it has been since 11-7-2016, I have cried every morning I awake, I don't know how to get through this either, I won't go on meds, but have been thinking about looking into hypnosis on grieving, I realize my mind is taken over this horrable pain of loosing my husband but I don't know how to control the grieving and missing him so much. My prayers for you and all of us here.
    JoNas likes this.
  9. Sending hugs and prayers to you, I lost my dear husband to 24 years of Parkinsons, I totally took care of him his last nine years at home he was wheelchair after a traumatic brain injury from a fall due to the Parkinsons, I miss him so much and have cried every morning I awake since 11-7-2016, God gave me the strength through those many years of his disease, I pray daily for God to bring peace and comfort to my heart, pray this for you too.
  10. Dear Patti, I am also named Patti, lost my husband to 24 years of Parkinsons 11-7-2016, my heart knows the pain after being caregiver for my husband by myself his last nine years at home. Pray for God to give comfort and peace to your heart and all of us here.
    JoNas likes this.
  11. paul tinker

    paul tinker Well-Known Member

    The two Patties and Susan.

    What always I get from this site and most here are two things. The magnitude of our experience. We are very overwhelmed and floundering. We are also willing to share and express it. I am not all alone and so similar to so many. We are at a so base level of being in the world. The experience being a shared experience is very helpful.
    JoNas likes this.
  12. Haven't posted much on this site, I need to read how to use it. Prayers for you and all of us here. Blessings, Patti
  13. paul tinker

    paul tinker Well-Known Member

    Lost Thanks.

    If you have a chance on this home page is a video by our site creator and benefactor. In the video is her long experience with grief and likely a very good degree of study to go with that. Her core belief is to create a place for like people to be. They will, in turn, seek out like-minded others. Hence the categories. For me was spouse, a caretaker is a key one. The site is munis judgment. In that, we tend to care for each other. There is healing in that.

    Some site things I did but not here. Lots of tributes for Kay. Tons of rituals like pictures of her, candles, very careful with her things and all memories. I do post some. I read a lot more. The reading is the stories. Those are so much but above all is sincerity. That comes through all the time.
  15. riverinohio

    riverinohio Active Member

    thank you for your kindness. It is appreciated. I never knew grief could be so consuming and so incredibly painful. It is so hard to believe it has been 444 days without him. He passed in December of 2018. I took care of my dad and it was beyond painful but very rewarding. I miss him so. Thank you again for your kindness.
    JoNas likes this.
  16. Thank you for posting back to me, I am going to be lifting you in my prayers, Bless you in being a wonderful daughter. My Dear husband was born in Canton, Ohio, They moved to Arizona when he was 10. If you ever need someone to talk with let me know, sending big hug and praying for God to give comfort to your heart. Sincerely, Patti
  17. I have had difficulty getting itositecan you please let me know if this posts. Thank you
  18. paul tinker

    paul tinker Well-Known Member


    It did post. Sorry for the Parkinsons. The middle word,"itositecan" is a bit run on. You are doing the best you can. I have poor vision and often wish I could edit but most get the meaning in context.

    I hope this helps.

    Paul M.
  19. Sheila512

    Sheila512 Well-Known Member

    To those who feel it is not 'right' to take meds while grieving. I have been taking anti-depressants for years due to sever difficulties with my kids. I have reduced my dosages considerably but I could not go on with out. Here is why: These meds to no , in any way, mask how you feel. I grieve, cry, and experience every emotion. nThe difference for meis that I can feel BUT still function. Without these medications I was unable to function. I was so depressed and couldn't focus and had a hard time caring for myself and my family. It takes a few weeks for the meds to work and initially they do make you dizzy or nauseated for while, but it goes away. The meds also allowed me to keep my health. The stress when I was not on medication brought me bleeding ulcers and colitis. Stress can kill. These medications allowed me to go on with my life fairly normally. Since my husband passed. I grieve every single day. I try to put it into perspective and still go on with what life I have left. I an not so sure I have much of a life left, but whatever it is, I want to make it good.

    I still feel like I am standing on the edge of life....only a past and no future. I can hear my husband telling me to look forward and smile because he truly knew how much I loved him and that is a great comfort to me. Be safe and find peace