Emotionally drained(1)

Jamaicabound

Back in May I posted that my DH was beginning the end of the journey. When he came home from the hospital he was put under home hospice and we were told we were probably looking at weeks not months.  It has been over two months.  He seemed to "rally back" to some extent. He can no longer walk or stand. We are trying to get a hoyer lift to help me move him more easily. He can't do anything on his own. He very randomly will respond to what you say but is pretty much nonverbal.

These are not complaints. I am truly grateful that I was given more time with him. But as time goes on I become more emotionally drained. This is my far the hardest part of the journey yet. watching someone you love just sit or lay all day is exhausting and when I say to myself "I don't know how much longer I can watch this" I feel so selfish because then I think what he is going thru. I find myself crying more and I don't want to spend the remainder of my time being sad but it is so hard to stop. No matter how hard you try to preserve someone's dignity, there is no dignity with this disease.

My oldest son purchased his first home last week. He was afraid, as are my other two still living at home, to leave me and get on with his life. I am so happy he has chosen to do so but this too adds to my sadness. I want this to be a happy exciting time, not be overshadowed by his father's circumstances. But this too will be another mix of emotions for me. 

I apologize for sounding ". like a "Debbie Downer". I really am not that type of person. I just want my heart to stop hurting.

Thanks for listening.

loveskitties

Aww...Jamicabound....you are not a Debbie Downer...your emotions a real and shared by all who have to watch a LO travel thru this terrible disease.

We all go between wishing for a dignified end to wishing for every minute we can get.  The physical form is still present, but the essence of the person we have loved slips away more every day.  

We morn for what might have been, not only for ourselves but for our LO too.

Glad you have your children to help you thru this.

LovingAwareness

I know the feeling. Dad shadows me constantly and other than the 3 hours he is at daycare three times a week (which does not do me much good since I have to use that time to try to catch up on my job, which I am perpetually behind on and just hanging on by my fingernails.) I never get a break from him. I love him, but I feel like Sisyphus dragging my giant Dad-Stone up the hill for all eternity.

So that is where an overnight in a local hotel comes in. I did this a couple of weeks ago - my brother took full-time Dad duty and I spent two nights in a hotel about three miles from where I live with Dad - the first nights I had spent away from home in more than four years. I debated going to the beach, the mountains, some sort of vacation, and finally realized that all I wanted was a couple of nights to myself in a quiet place where I could go to sleep when I wanted and sleep in as late as I wanted, eat whatever I wished when I wished, take a long bath every day, and go browse around a grocery store or clothes store for as long as I wanted.

Exciting vacations can wait - this was everything I had hoped it would be, and I'm going to make it a regular thing.

I highly recommend it. Even one overnight away from my LO gave me a chance to catch my breath and reset my perspective just a bit. It was hard coming back, but while I was gone I realized that my time with Dad will not last forever and someday I will be able to live the way I want to and take care of myself again. It is hard to remember that when you are constantly in the thick of it. 

abc123

You are not a downer, not by any means. You are a wife who is losing her husband while the rest of the world continues on. I am sorry this is happening. Its not easy but you are dealing with it the best you can. That is a fact that may help carry you through.

There's a little book available online called Midwife For Souls: Spiritual Care For The Dying by Kathy Kalina. Kathy is a hospice nurse and this little book is overflowing with love, information and wisdom. I hope you will check it out. It helped me when my husband was nearing the end of his life. It was a blessing to me. I hope you find peace and comfort. I'm sorry you and your children are hurting. 

aod326

I found the dementia journey a total rollercoaster, and the final months were no different. Last year DH declined rapidly and, at Thanksgiving I thought it was unlikely he'd make Christmas. In January I made the decision to bring him home from MC, with the help of a live-in carer. He had such an improvement the last few days in MC that I really worried he wouldn't be accepted by hospice. (He was.)

He went up and down a lot, and I read everything I could lay my hands on about end-of-life and actively dying. I was constantly asking the hospice nurse what she thought. 

After a few weeks at home he had a real positive surge. In spite of everything I'd read about end-of-life rallies/surges I even thought he had suddenly got better. (Long story, but we only found out post-mortem that he had EOAD, we had thought it some unknown neurodegenerative disease.) I'm not proud of it, but on the third day of this surge, I found I couldn't even look at him. I was screaming (inside my head); "Make up your mind!!" He gradually went back to his baseline, and died three weeks later, on April 7. But even the final week, on Wednesday hospice said they thought he had 24 hrs max. By the following Monday, when the hospice nurse came, and took his BP, she said "I don't think you want to know what it is". 130/70. darn* him! (Said with a sort of smile.) He finally died lunchtime of that Wednesday, a week after when hospice expected. 

The uncertainty is so hard to deal with. You are not a Debbie Downer at all. Please know that we understand and are with you.