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By Cordelia1 On 2019.10.15 23:14
My dad died 4 weeks ago and life without him is very difficult. He went into the hospital Labor Day weekend with pneumonia and other PD problems. I tried to get him home for the end, but hospice and the docs wouldn't let me. I reached out to hospice last week but evidently I can't attend any support groups until Dad's been dead at least 3 months. Isn't that ridiculous?

How do caregivers adjust to life afterward? I was with him 14-24 hours a day and exhausted all the time, but I miss him dreadfully. It is too quiet in the house and lonely. When I'm at work I'm busy, but when I get home, I fall apart.

Dad was terrified of dying and terrified to be in the hospital--I blame myself for taking him there, but I don't know what else we could have done. I'm not sure if his pain and fear were controlled adequately at the end, even though we requested more meds for him. My brother and I took shifts the last four days so that he was never alone. But I don't know if that was enough. Or if he suffered less. I just miss him.

By LOHENGR1N On 2019.10.15 23:55
My sincerest condolences to you and your family upon your loss.

By jcoff012 On 2019.10.16 17:27
One of the hardest things to accept is coming to peace with decisions made near the end of life. Please know your Dad loved you and would not want you to endlessly grieve and blame yourself. He knew you did your best.

That said, please give yourself time to understand your loss. It takes time to face the life of the past and to learn to cope and move forward. But, you must move on. You never forget those last times, but you learn to accept that which you cannot change. You also learn to replace sadness with laughter and remembrance of the good, fun times you had together.

Is it easy? Not at first. Every day, every moment seems overwhelmingly sad or lonely. But, slowly, life will change. Your pain of loss never goes away, but that deep sadness will lessen as you learn to cope. In the future, the pain of loss will hurt less, I promise you.

You loved your dad, but he would want you to move ahead, for he knew you loved him...and still do. Please take care of yourself and good luck.

By Cordelia1 On 2019.10.16 22:39
Thank you, jcoff and Lohengrin. It is hard to come to terms with my dad's passing and life now. I'm doing what I can do, day by day. Coming home after work tonight is especially painful because he and his favorite aide always greeted me when I came in on Wednesdays. I know he loved me, but I just wish I could talk to him tonight.

By VioletV On 2019.10.20 14:14
I am so sorry for your loss of your dad. It's very hard to make the adjustment and you are allowed to feel what ever comes to you and to adapt in your own time. I wish you peace.

By Lynnie2 On 2019.10.21 11:12
i am so sorry for your loss. I also lost my husband 8 months ago and we were married 50 years. He had PD for 12 years and was only 70 years old. He was in a nursing home as I couldn't look after him anymore.
I was able to take a Art Healing class at the hospice and am now taking a second class there. My husband didn't die in the hospice but they accepted anyone.
I don't understand why the hospice you mentioned would not accept you until 3 months after his death. That is when you need them the most. I guess a hospice is different in your country than here in Canada.
Is there a social worker that could talk to you in the meantime at the hospice? I met with a social worker twice before I took the class which is also like a support group. There were 10 of us who lost a family member or husband.

Is there a Parkinson's support group in your area that you could go to? That might help too.
Just know it takes time and things will become easier for you. I lost my father 15 years ago when he was almost 97 years old. He was in a residence so didn't live with me like your dad.

I know what you mean at night when you are alone. I watch lots of TV or Netflix at night which helps. It's good you work to keep your days busy.
Take care.

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