My Mother had Alzhiemers/ Dementia for 6 yrs. and was in a nursing home. Her last year she was bedridden and sometimes sat in a gerry chair. She hollered or screamed most words for the whole 6 yrs. The last year she couldn't feed herself or even take a sip of water without help, her hands were closed and she couldn't open them. I went to the nursing home at least once a day but usually 3 or more times a day and would stay for hours or longer sometimes. I was definately hands on constantly as I only lived about 3 blocks from the nursing home. I had hopice for her the last 6 months. I would cook food when she wouldn't eat their food, bathed her , and took care of her needs when I was there. She couldn't talk very well and would scream most words, she always knew who I was. The last month I had to go out of town (my daughter was ill ) and was planning on being gone about 3 weeks which I was very nervous about doing because I had never left her for more than a few days at a time. The day I left I kissed Mom and told her I was bringing back her Great Granddaughter to see her in a few weeks.....she smiled and tryed to give me a kiss on the cheek. I went out the door and for some reason I went back to the doorway and blew her a kiss and she blew one back at me. I was gone 2 weeks. On a friday hospice called and the nurses from the nursing home and said Mom was doing great....smiling and watching t.v. Three days later on Tuesday morning they said I needed to hurry back, which I did. I couldn't believe the state of my Mother's condition!! She was like comatoes......staring straight ahead and no reaction. When I got there I told her I was there and she did barely grunt so I knew she knew I was there with her. It was devastating!!! No one could tell me what happened!!! I think she just quit eating and drinking. I know the aides didn't think to give her drinks unless it was with a meal and some , not all because she did have a few good aides, would walk out if she refused to drink. They all said she was fine on Sunday, so what happened that quickly??!! I blame myself even though everyone says it was for the best. I know Mom wouldn't have wanted to live the way she was....it was horrible....but if I wouldn't have left her I think she would still be here. I have so many guilt feelings and not knowing what happened makes it so much harder. Did she just think I deserted her? or Did she feel unloved because I wasn't there to take and make sure she got the care she needed? Did they not even try to feed or give her something to drink? or did she even realize I was gone? So many questions and no one has any answers! The guilt is horrible!! If I didn't have to go take care of my daughter and stayed with Mom would things have turned out different? My daughter lives 14 hrs away. It would so help to have some answers. I have heard it all from friends and family......" you were a good daughter and was there and gave 100% to your Mom," "It was meant to be and she suffered enough" " She's in God's hands now" Yes, I heard it all and I know everyone means well but yet it still doesn't help the questions and guilt. Hopice, the nurses and aides said they didn't know what happened and they were shocked also. I guess I'll never know what happened and I do know that time heals the grief but time won't heal the wondering what happened. I had a son that died 20 yrs. ago so I do know about grief. He died of leukemia. Mom died May 28th, 2014 so it's only been 4 months and I loved her very much....She was a wonderful person and Mother. Has anyone else on here had a loved one with Dementia, that still knew everyone, die suddenly? I thought at the end that they didn't know anyone. My hope is that maybe someone out there has some answers The only other thing wrong with Mom was she had very high blood pressure which they had a hard time controlling with meds but she didn't have any apperance of having a stroke at the end.
My husband, Coy, died of dementia nearly 2 years ago, after a ten-year journey with it. I don't have any answers, but I'll share some thoughts with you:
Dementia is a terminal illness. People die from it eventually (unless they have a heart attack or are hit by a bus or die from some other cause first). My husband's death certificate says the cause of death was Lewy Body Dementia. That was the reason he was on hospice so that was the assumed cause. He donated his brain tissue for research and I got a very thorough report detailing the exact cause of death. It confirmed the cause of death as pneumonia and pulmonary embolism. That is the most common way persons with dementia die, as I understand it. It may well be what caused your mother's death, too. The autopsy report also stated he would not have lived long with the conditions of his arteries.
Coy knew me right to the minute of his death. He also knew the entire family. He recognized people new in his life, life the hospice nurse, without always remembering her name. I think it was a blessing that he still knew us.
Coy was on hospice for about 5 weeks. The hospice nurse thought he had several weeks left, and was surprised when I called to report his death. His death was not "sudden" -- he was on hospice, after all. We were expecting him to die. But death comes when it will come, and his came sooner than we anticipated. But it came when it was due. It came because of physical processes in his brain and in his body. The timing of his death had nothing to do with the care he was getting or any anxiety about relationships. He died because his body could not continue functioning.
While Coy was on hospice I offered him food and liquid often. I never "pushed" it. Based on what I learned from hospice I let him decide if he wanted food or a beverage. He hadn't eaten much for a few days but on the day he died he ate a normal breakfast. As you probably learned, too, at the end the body is busy shutting down and cannot really process nutrition.
No one can know what is in someone else's mind. It is possible that your mother wondered where you were. I suspect, though, that she was frequently reminded of the reason you had to be away and that you loved her very much. Nursing home staff and especially hospice are good about these things.
It is highly unlikely that your mother would still be here if you hadn't left to care for your daughter. MAYBE she would have lasted a few more days. But certainly not four more months. It was her time to go. Her body was shutting down. It just could not continue to sustain life. I am sure you were an awesome caregiver. But no one is awesome enough to prevent death when its time has come. Please realize that it was never within your power to determine when and how your mother left this life. You have no reason to feel guilty. You say her life was horrible. Even if you had the power to extend it (which you didn't) would that have been the right thing to do?
Dementia is a terminal disease. Your mother and my husband, both very wonderful people, died from it. You and I did all we could to ease their journey with the disease, but we had no power to prevent their deaths.
I miss my dear Coy terribly. But I am glad to have had the privilege of guarding the quality of his life as long as he lived. I have regrets, but no guilt.
I hope you can come to that place in your own journey, too.
It could be that your Mom had some sort of organ failure. Something I the brain just suddenly was not able to transfer the correct signal needed for organs to do their job correctly. Hmmm, just a guess.
You are a good daughter and should not feel guilty. Ask yourself what would your mother had wanted you to do? Your daughter needed help and the way you describe your mother as a kind and caring, loving person I know she would have chosen as you did. I am sorry that you are going through this guilt. I think most of us do when the time comes. Find a support group for dealing with your feelings. It will be helpful to you to meet others that are going through the same thing.