Your article brought me to tears from recognition that when you love a person whose mind creates an unshareable universe, you have to constantly re-design your own moorings. I agree with other commenters that your writing was beautiful and useful. I learned something new by your mentioning Pick's Syndrome, which I had never heard of. After some Internet research, I was surprised to learn Pick's can have a much earlier onset than other forms of dementia. The symptoms may explain some of the apparent malicious narcissism seen in my mother, which dovetailed with the onset of her middle age. What an eye opener and inspiration your writing was for me!
I feel the same as you. I love my husband so much and don't want him to suffer. It is hard to find support groups, and I felt like I was so alone trying to understand what was happening.
What a lovely story of dealing with this disease. Your mother is lucky to have a caring family. My husband had open heart, three days later a pacemaker put in and two weeks later a stroke. It has been a very hard for both of us. He is unable to come home and doesn't understand. We are doing what we can to get through this. He has always been so caring for everyone's needs and in his mind thinks he still can. Now it's his turn to be taken care of... This has been such a big adjustment for me, too, but my main concern is always that he is taken care of properly.
What a lovely article and perspective. I am so happy for your family and your mother that you seemed to know or learn the right approach to this terrible nightmare of a disease. You may be able to answer for me the one issue I have not been able to come to terms with and you mentioned in your article relating to love as an emotion. I took care of my boyfriend for almost 10 years. He was disabled when I met him due to a TBI when he was 20 (I met him when he was 49). After one year together he had a stroke. We weathered that storm together as well. We were both living in PA where he was born and raised though I was originally from Texas. I needed to move south to take care of two aging family members. He chose to come with me of his own free will. In the 7 years that followed neither of his grown daughters or any other family member came to visit. I made sure he went back every other year to visit his mom and other family and friends. At 54 he was diagnosed with early onset dementia. His behavior had been changing for the worse in the two years prior to the diagnosis. This once sweet and loving man became verbally, mentally, emotionally any physically abusive to me and me alone. I continued to care for his every need. Planned trips to places I thought he might never be able to experience again in his lifetime. I planned outings for us three days a week to keep him engaged in life and tried to let his growing nastiness roll off my back blaming the dementia and not the person. This went on for over 3 more years. Eventually he became wheelchair bound therefore unable to leave the house. I also no longer felt safe with him in my home 24/7. I found a fabulous senior community where he could live in his own independent apartment. They had assisted living and skilled nursing home facilities on the premises if he needed them in the future. We discussed this option at great length and he said that as long as I would still be his caregiver he thought it was a great plan and believed some time apart would improve our relationship. After he moved things just deteriorated from there. He became unbearably abusive and would call his family accusing me of abusing him, stealing from him, leaving him with no food or medication etc. etc. one day he told me he was having a sexual relationship with his nurse when I was not there. Ouch. Last Christmas I went and got him and brought him back home for three days to celebrate the holidays. It was a nightmare. On December 28th at 6:45am he called and begged me to come help him with somethings. I, of course, did. On New Years Eve I called to wish him a happy new year only to find his phone disconnected. I eventually learned he had up and moved back to Philly without any warning to me. His family did exactly what I knew they would do and put him in a nursing home immediately. The way I found out was through a new FB account his daughters set up which showed him in a nursing home environment. They have made sure he has no way to communicate with me. I have prayed and prayed and prayed that in his heart he still remembers the love we once shared because I cannot imagine how that emotion is not still there. when he left town he could still handle grooming himself, still enjoyed reading a book, could follow a tv show with multiple plots and every play of a football game. He still went to the gym and church on his campus and would treat others with much kindness. Everyone but me. The one who did the most for him for 10 loooong years. How would you assess this situation. He seemingly had forgotten the emotion of love where I was concerned. I do not feel as if he was so bad off that a nursing home was warranted at the time he went back to PA but that no family member was willing to care for him. Please help me understand if you can. I am moving on now but the pain and abandonment of what he did lingers even though I forgave him long ago.
Thank you Michele for sharing your story. It helps so much to know that we are not alone. I will wake up in the middle of the night and think of my mom and all the things she can no longer do and feel so guilty for not spending more time with her.
This article is so beautiful. Thank you for writing it and giving me a more positive attitude toward the dementia and what it is robbing us of my mom. I sometimes wonder how long the battle will be and if I will be able to be a good daughter for the duration. I realize my mom is fortunate in her stage compared to the rapid decline I hear of with other parents. Thank you again.
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Early-Onset Alzheimer's: A Story of Love and Loss
You may be able to answer for me the one issue I have not been able to come to terms with and you mentioned in your article relating to love as an emotion.
I took care of my boyfriend for almost 10 years. He was disabled when I met him due to a TBI when he was 20 (I met him when he was 49). After one year together he had a stroke. We weathered that storm together as well. We were both living in PA where he was born and raised though I was originally from Texas. I needed to move south to take care of two aging family members. He chose to come with me of his own free will. In the 7 years that followed neither of his grown daughters or any other family member came to visit. I made sure he went back every other year to visit his mom and other family and friends.
At 54 he was diagnosed with early onset dementia. His behavior had been changing for the worse in the two years prior to the diagnosis. This once sweet and loving man became verbally, mentally, emotionally any physically abusive to me and me alone. I continued to care for his every need. Planned trips to places I thought he might never be able to experience again in his lifetime. I planned outings for us three days a week to keep him engaged in life and tried to let his growing nastiness roll off my back blaming the dementia and not the person. This went on for over 3 more years.
Eventually he became wheelchair bound therefore unable to leave the house. I also no longer felt safe with him in my home 24/7. I found a fabulous senior community where he could live in his own independent apartment. They had assisted living and skilled nursing home facilities on the premises if he needed them in the future. We discussed this option at great length and he said that as long as I would still be his caregiver he thought it was a great plan and believed some time apart would improve our relationship.
After he moved things just deteriorated from there. He became unbearably abusive and would call his family accusing me of abusing him, stealing from him, leaving him with no food or medication etc. etc. one day he told me he was having a sexual relationship with his nurse when I was not there. Ouch.
Last Christmas I went and got him and brought him back home for three days to celebrate the holidays. It was a nightmare. On December 28th at 6:45am he called and begged me to come help him with somethings. I, of course, did. On New Years Eve I called to wish him a happy new year only to find his phone disconnected. I eventually learned he had up and moved back to Philly without any warning to me. His family did exactly what I knew they would do and put him in a nursing home immediately. The way I found out was through a new FB account his daughters set up which showed him in a nursing home environment. They have made sure he has no way to communicate with me.
I have prayed and prayed and prayed that in his heart he still remembers the love we once shared because I cannot imagine how that emotion is not still there.
when he left town he could still handle grooming himself, still enjoyed reading a book, could follow a tv show with multiple plots and every play of a football game. He still went to the gym and church on his campus and would treat others with much kindness. Everyone but me. The one who did the most for him for 10 loooong years. How would you assess this situation. He seemingly had forgotten the emotion of love where I was concerned. I do not feel as if he was so bad off that a nursing home was warranted at the time he went back to PA but that no family member was willing to care for him. Please help me understand if you can. I am moving on now but the pain and abandonment of what he did lingers even though I forgave him long ago.