Alabama Nancy

Andrew, Your sister shows so much love and selfless concern for her family. Your comments to me have helped and are very appreciated. I understand the conflict between wishing the suffering could end, and grieving her anticipated loss. It is a struggle to put on a brave face!

Marj, Namaste, the light in me also honors the light in you. May you find solace and peace in the knowledge that KB was so deeply loved and had a beautiful life with you. Nancy

It is difficult to decide how much I can devote to the illness of my family members and still have some wholeness in my own life. I am afraid that I am avoiding the pain of trying to deal with some very painful situations by limiting the time I spend trying to meet the needs of my family. I don't want to make irresponsible or selfish decisions and then be eaten up by feelings of guilt. How much is enough, too much or too little? I definitely cannot be a "fixer" since there are no solutions. My older sister has a very rare, progressive disease that is incurable. It's called PSP, Progressive Supranuclear Palsy. She has been deteriorating for 6 years and can no longer talk, can walk only a few steps with a lot of assistance, and has great difficulty swallowing her food. My 101 year old Mother lives 1,000 miles from me in Michigan and never sees a family member except for me. My older sister cannot travel and my younger sister does not visit our Mother even though she lives only 18 miles from the assisted living facility where Mother lives. My younger sister is schizophrenic, very intelligent and very manipulative. My parents tried so hard to "fix" her and that was an impossible task. What my sister learned is how to use her illness in super manipulative ways to get things she wants. It is hard to separate real problems from purposeful dramas created to control others. I have been the primary person trying to help her (younger sister) for the last 14 years. I feel so empty after I fly to California to encourage, love and support my older sister. I feel the same way when I leave Michigan and never can come up with the solutions or do enough to resolve my younger sister's complaints. My Mother thinks my younger sister does not have a car because she never visits her. We provide a car and take care of the related expenses for her but that car is not nice enough, good enough etc. I am tired. I have to really work to maintain a happy demeanor when I see my older sister's suffering. She is so brave. I don't know where she gets the strength to keep trying to walk and talk etc. Two weeks is my limit for each visit in California. When I get back home I am exhausted. I had a pacemaker implanted in mid November, 2014 and have had to adjust to various medications designed to deal with heart arrhythmias. I have always been a solid, competent person but do not feel very strong and capable now. Depending on a pacemaker and drugs to function well does have a psychological effect. I am torn between not knowing if I am doing everything that I should to nurture and support my family and still maintain my own health and have a life of my own. I don't want to feel guilty later if I feel that I have not made the right decisions or done enough. I feel like I just recover from one trip and then am off again to fly to California, or drive to Michigan. Maybe I am weak. Maybe I have a bad attitude. It is so difficult when there are so many circumstances beyond my control. I am a watcher of the unfixable. I am 73, soon to be 74 and work out 5 days a week at an exercise class trying to stay as healthy as possible.

Thank you for your reply to my comments and suggestion to start my own thread. I need to spend some time thinking about what I want to say and will start a thread soon. Nancy

Andew, I understand how you feel! My older sister has a very rare disease called PSP, Progressive Supranuclear Palsey. She has been progressively getting worse for 6 years now and can no longer speak. Swallowing is a real problem and she can only walk a few steps with assistance from a 24/7 caregiver and her husband. I don't know where she gets the strength to keep trying. I have had alot of challenging jobs and always felt competant, but now I don't feel strong and competant at all. Our "fixer" roles aren't working. It is so hard to watch someone we love suffer and be powerless to be of any real help. I go through the same anxiety you do when it comes to flying to California to see my sister and her husband. It is so hard to watch her suffer, but then I chastize myself for being so weak. I put on a brave face during the weeks I am there and am a worn out emotional wreck when I get home. Then I have my schizophrenic sister in Michigan along with my 102 year old Mother. Give me strength. I feel like I am sitting on a time bomb, never knowing what the message will be when I pick up the phone. All we can do is our best and that includes caring for our own mental and physical health. Keep supplementing your visits with loving phone calls and some cards. Come to think of it, that can be a challenge too. My sister recently had a birthday and the cards usually say "Happy" Birthday. So, I hope that your have a loving companion that will help you through this and some absorbing work and hobbies to give some respite from sad thoughts. This is my first post and I appreciate the opportunity to learn from this blog. I understand the feelings you have when it is time to make travel plans.