Mum, I miss you so much....
My mother died two months ago yesterday. I have taken care of her in some fashion since my father died around 20 years ago. She lived with my husband and me for over 10 years because she was too frail/unsteady to take care of herself, and during the past year we became her full-time caregivers. She had a stroke last year, wasn't able to walk anymore, and developed vascular dementia. It was difficult, but we made it work.
The last several months were not difficult, they were HARD, and with the bad weather we had in February, I thought I was going nuts. My mom got really bad after Christmas (sleeping most of the time, getting "mean," fighting with me -- and I am embarrased to say I fought back -- and talking to "people" or yelling for me all night). My husband was having a had time lifting her (she fell twice) and suggested that it might be time to think about placing her somewhere. I had PROMISED my mother than I would NEVER do that, but our hospice nurse suggested that we might look into respite care for a few days.
My mother was LIVID and said I was a horrible daughter...But that same day she suffered another mini-stroke, our electricity went out, which means her oxygen machine didn't work, so we took her to the hospice facility (where I stayed overnight with her the first night). She ended up staying there 5 days because our weather was so bad and my aid was snowed in. My husband, who was working nights, was unable to get home in time for me to leave for work in the morning, so I asked if she could stay at hospice until the snow stopped.
There were 3 days when I couldn't get out to see my mom, but they kept telling me she "was fine." All she wanted was to come home...They brought her home by ambulance on a cold and snowy Thursday night -- she now had a catheter and was sleeping. She slept all day Friday and when she woke on Saturday morning, I gave her some water and told her I was going to the grocery store and would bring her a "prize" (she loved prizes). My husband and our aid were with her -- she said she was hungry and after the aid gave her breakfast, she started turning blue...my husband called the paramedics even though we had a DNR on her, but she was dead by the time I got home from the store (I had missed her death by minutes...).
I feel so guilty for sending her away from the place she loved for 5 days, I feel so guilty for not visiting her every day while she was away, I feel guilty for leaving her the day she died, I am so angry at the hospice nurses who kept telling me she was fine and who NEVER came to the house to examine her the night she came home or even the next day -- and by the time the nurse DID show up on Saturday, she had already passed. To this day I have not heard anything from anyone at hospice.
So to you all who have nothing but wonderful stories about hospice, I am happy for you, but I am bitter. So many people have told me that my mother didn't want me there when she passed, but I KNOW that is not true. My mother ALWAYS wanted me with her, and I ALWAYS WAS with her...and I firmly believe that if one of the nurses had been over to check on her, they would have told me that we were nearing the end and I would NEVER have gone to the store. I am praying that she was not mad at me at the end...