What to expect when your love one is dying

I have been on the Internet today trying to find out what to expect with Beverly as she nears the end. I found good information at http://www.hospicenet.org/html/preparing_for.html. We've spent several hours with her over the last 4 days. Yesterday was especially hard cause she is having a hard time swallowing and had not ate or drank anything for the nurses. We offered to help her and they let us. Roger wanted me to try as I did the day before. I tried to get her to take sips of broth, and pop but could not tell if she really wanted them. I felt like I was forcing her. Her eyes would tear up and I just couldn't do it anymore, so Roger tried again. We had sat the head of the bed up which made her uncomfortable I could tell. I told Roger to put it back down again and let her rest comfortably. When we first came into the room and we waked her she said "Well, well, well." Sunday evening it took all she could do to say to us "Thank you for coming" It is heart wrenching. I've told Roger we need to let the nurses and hospice do their job and we just come and let her know we are there. Read to her, talk to her, soothe her (Rog rubs her head) but not try to force her to eat or drink. I also confirmed this when I read the info on the hospice site.

Dad cried on the way there. Rog touched his shoulder assuring him we are here for him. He keeps saying it's a natural part of life and he'll be fine. He says he doesn't like to see her suffer. She does have pain when she is moved and they've now placed a cathedar in. She has a bedsore that probably won't completely heal but they will treat. Her body is frail, her arms just skin and bone, her eyes hopelessly sad and glazed over. Hospice is good and the nursing home staff are excellent. I don't know how people manage at home with their loved ones during these last stages. I am glad for the time we had Beverly at home and she could sit up and interact with us still. Now I just want her to be comfortable. They will start a new pain med. Roxenal which she won't have to swallow since that is getting very hard.

My neighbor kept her mom home til she died. She said she wishes now she'd let her go to the nursing home. Some of the family wanted her alert, other's (my neighbor, her primary caregiver) wanted her pain free. There was conflict in the family. I think it'd be nice to have more family around us but since Rog is an only sibling there is just us. We do appreciate extended family, friends and the church that has called and offered their help. I am a little ticked about those who haven't called. I guess as I've said before you don't realize how important a card, an e-mail, a call can be until you've been thru this yourself. I'm trying to find it in my heart to forgive those who find excuses not to help. I really need help with this! I have a few friends that are dealing with aging parents and illness. I hope I can be of some comfort to them because of my experiences. Kev called last night, he didn't ask how I was but I poured my heart out to him anyway. That's what we need...someone to just listen...and pray...and care.

On a positive note. Beverly's color is still good, she still will smile at us, she knows we are there. And my mom is awesome! I told her I was sorry I was neglecting her but Beverly needed me more and she was so understanding. I will take her to the dentist this Thursday...I hope it goes well, she has a broken tooth. I think God made mom a little better while we are going thru this with Beverly.

Camdyn turned 2 and Jess and Casey had a birthday party for him. He loved all his "cars" stuff and toys but threw his clothes!

Sustaining...

I don't know how to begin. I guess to say that a strength greater than me has been sustaining me these days. I typically wouldn't see myself as a caregiver. But because of my love for Roger and my love and sympathy for Roger's mom (and dad), I've taken off work to care for Beverly in our home til she can go into Parkview once again. Jim was not able to care for Beverly properly anymore so I had to learn the ins and outs of caring for a hospice patient. Regardless of what people may believe, Hospice is only a support group for the family. The nurse comes once a week and the aid twice for baths. The family are the caregivers. And since Rog is the only sibling, that leaves us with sole responsibility. I've talked with lots of others in this situation. It is amazing the roles children can take on for their parents. Becoming the caregiver, lossing sleep, helping manage finaces, being comforters, all while grieving the nearing dismise of their loved one (which you never truly know when) Once when Beverly actually slept thru the entire night I checked in on her and she seemed to be asleep. So I started imagining the worse. Then I heard her bell ring. An often dreaded but blissful sound this time. We are not ready. There is always one more moment we want to share. However, when her stronger (now) pain comes or her disturbing vomiting comes you want her to go; to go to sleep and wake up with the Lord. Roger has been so grateful for my help. He has struggled as he sat with her and had her repeat to him how much she loves him. He has struggled when his dad broke down in tears and Rog held him in his arms. Jim and Beverly have been together 41 years together tomarrow, Sept 23. I am moved when I see Jim holding Beverly's hand as she sits in her wheelchair next to him on our couch. Or when they kiss goodnight as Jim goes to an empty house without his life partner. He sleeps best at home but comes over to visit and eat. He says he hates to eat alone.
I am not sure how long I can do this. I want life back to normal. I am feeling selfish but at the same time I am feeling sustained and blessed. I do think that if I have to continue I won't hold it together. It's only been a short time but feels so long. I miss my grandbaby and the time I spent with him. I miss alone time with Rog and Erik. I want to go see Kev's new apartment at college. I want to go to a movie with a friend. I want to be selfish!!! I don't want to get up in the middle of the night or clean anymore bottoms. I don't want to smell the stinch of urine and waste or see the sight of vomit, wiping strings of spit away. I do want to play a game of cards with her and see her smile as Rog helps her win. I do want to share their anniversary cake with her and Jim and take their picture holding one another. I do want to keep receiving her hugs. I do want Rog to enjoy as many good moments as he can with her. I do want Erik to recognize the importance of taking care of someone, of family. I appreciate the friends and church who have called with concern and sent food or offered help. No one knows what it means until they experience it!!!