Lorainemarie
11-03-2006, 11:32 AM
I originally began stopping in here for advice on how to help my mother. My mother is in the late stages of Progressive Supranuclear Palsy. PSP has caused her to be unable to move and your advice over the years has been most helpful. Since my mother cannot move her eyes and suffers cognitive slowness; she cannot use the communication devices that people with ALS use. I continued to stop in here because I like the feeling of hope that Bobby's research articles gave me and I had begun to feel that the people on this board were friends, ever so special friends that typed out advice for me when I know this cannot be easy for them. Eventually, my father developed Frontotemporal Dementia and FTD has been shown to be related to ALS. I continued to stop by this board and a number of other ALS boards for news about my friends here and for research news. Although I don't post a lot, because I really don't belong here, I feel close to all of you.
My father died last week. I posted this on the PSP board but I wanted to share this news with you as well:
Last Wednesday my father had a heart attack. He managed to call my brother and my brother called the ambulance. They debated about taking him to the hospital since the pacemaker made it difficult to determine if he had had a heart attack or not. At the hospital they held him in the emergency room for 4 hours before determining that he had had a survivable heart attack; then they admitted him to coronary intensive care. This was the same CICU where he was 19 years ago when his heart began giving him trouble.
I spoke to him that night on the phone and he spoke a little. My dad had Primary Progressive Aphasia that had progressed to Frontal Temporal Dementia so he had extreme difficulty speaking. My sister was there all day and spoke to him at length about what interventions he wanted. He wanted to be rescusitated only if there was hope of survival enough to go home. My sister had his advance directive with her but she didn't leave it there that night because she didn't want any misunderstanding. My dad had an artificial heart valve for 19 years and he was very out of breath lately. He had a routine cardiologist visit on Monday and they gave his heart a clean bill of health but there is only so far preventative care can go at age 84.
On Thursday morning my father had an even more serious heart attack and they put him on a respirator. My sister invoked the advance directive on his behalf. My brother went to the nursing home, managed to load my mother in the car and brought her to my dad's hospital room. My twin sister drove up from Baltimore. My mother is in the late stages of PSP but she did rally. She hasn't spoken (except to mouth words with her lips) in six months but she spoke (at whisper level and very unclearly) a number of times. She spoke more in the last week than she has collectively in the last six months. My mother, two of my sisters, my brother, myself, and various spouses were there when they removed the respirator. He was able to breath without the respirator.
He was alive, breathing heavily for about 4 hours after they removed the respirator. When my sister had to leave she said "I am going now" and he echoed that. Eventually my brother took my mother back to the nursing home. My twin sister and I were alone with my dad. He managed to say "I love you" to me about an hour before he died. My sister and I were holding his hands and telling him we loved him (and that mom loved him) when he stopped breathing. I took 3 or 4 minutes. He would breath a few times, stop, breath once more. Eventually he was gone. I loved him so much and I miss him.
Then my sister and I went to the nursing home, woke my mother up, and told her that he was gone. My mother whispered "Did he suffer?" and said repeatedly "I wasn't there." I told her that I had told him at the end that she loved him and since he didn't open his eyes, he probably thought she was still in the room. Then she asked, "Was I there?" Although mother didn't really react much, since she cannot move, the hardest part was telling her.
My mother attended the viewing, funeral, and lunch afterward. Two of her brothers, two of her sisters, and a number of other relatives came. My mother didn't manage to talk to her relatives but I think we convinced them that she knew they were there. We stood her up by the casket and held her up while she touched my dad's body.
I cannot shake the persistent misconception that my mother has died and not my dad. We are dividing up both of their possesions because we have to sell the house to pay for her ongoing care. While my dad was laying in the hospital and the staff was treating him it I kept forgetting that my dad couldn't speak. For a while they were talking about stents and recovery. I had this persistent belief that if they could help then he would be like he was before he developed PPA/FTD. It is all very surreal right now.
My dad was 84 and he lived in his own house, independently until the day before he died. He was driving the car until two weeks ago when he felt his vision was not good enough to drive. He had, finally, consented to go to the eye doctor but he never made it to the appointment. He never knew how bad the Frontotemporal Dementia could get. I am very sad right now but I think it was a blessing that he didn't have to end up like my mother and that he lived a long life. I feel most sorry for my mother; she will miss his daily visits. My parents were married on Thanksgiving; it would have been 60 years this fall. We are going to keep the house through Thanksgiving and bring her home for the holiday.
If you made it this far, thanks for listening. Although my parents both have lived long lives; I find it very cruel the illnesses they have suffered at the end.
I am very aware that people with ALS suffer these cruelties at a young age and that makes ALS all the more insidious. I will continue to keep those with ALS in my heart and I will be pushing for a cure for each of you as well as those with PSP & FTD. Thank you for the selfless way you have helped me over the years and I hope you won't mind if I continue to visit.
-Loraine
My father died last week. I posted this on the PSP board but I wanted to share this news with you as well:
Last Wednesday my father had a heart attack. He managed to call my brother and my brother called the ambulance. They debated about taking him to the hospital since the pacemaker made it difficult to determine if he had had a heart attack or not. At the hospital they held him in the emergency room for 4 hours before determining that he had had a survivable heart attack; then they admitted him to coronary intensive care. This was the same CICU where he was 19 years ago when his heart began giving him trouble.
I spoke to him that night on the phone and he spoke a little. My dad had Primary Progressive Aphasia that had progressed to Frontal Temporal Dementia so he had extreme difficulty speaking. My sister was there all day and spoke to him at length about what interventions he wanted. He wanted to be rescusitated only if there was hope of survival enough to go home. My sister had his advance directive with her but she didn't leave it there that night because she didn't want any misunderstanding. My dad had an artificial heart valve for 19 years and he was very out of breath lately. He had a routine cardiologist visit on Monday and they gave his heart a clean bill of health but there is only so far preventative care can go at age 84.
On Thursday morning my father had an even more serious heart attack and they put him on a respirator. My sister invoked the advance directive on his behalf. My brother went to the nursing home, managed to load my mother in the car and brought her to my dad's hospital room. My twin sister drove up from Baltimore. My mother is in the late stages of PSP but she did rally. She hasn't spoken (except to mouth words with her lips) in six months but she spoke (at whisper level and very unclearly) a number of times. She spoke more in the last week than she has collectively in the last six months. My mother, two of my sisters, my brother, myself, and various spouses were there when they removed the respirator. He was able to breath without the respirator.
He was alive, breathing heavily for about 4 hours after they removed the respirator. When my sister had to leave she said "I am going now" and he echoed that. Eventually my brother took my mother back to the nursing home. My twin sister and I were alone with my dad. He managed to say "I love you" to me about an hour before he died. My sister and I were holding his hands and telling him we loved him (and that mom loved him) when he stopped breathing. I took 3 or 4 minutes. He would breath a few times, stop, breath once more. Eventually he was gone. I loved him so much and I miss him.
Then my sister and I went to the nursing home, woke my mother up, and told her that he was gone. My mother whispered "Did he suffer?" and said repeatedly "I wasn't there." I told her that I had told him at the end that she loved him and since he didn't open his eyes, he probably thought she was still in the room. Then she asked, "Was I there?" Although mother didn't really react much, since she cannot move, the hardest part was telling her.
My mother attended the viewing, funeral, and lunch afterward. Two of her brothers, two of her sisters, and a number of other relatives came. My mother didn't manage to talk to her relatives but I think we convinced them that she knew they were there. We stood her up by the casket and held her up while she touched my dad's body.
I cannot shake the persistent misconception that my mother has died and not my dad. We are dividing up both of their possesions because we have to sell the house to pay for her ongoing care. While my dad was laying in the hospital and the staff was treating him it I kept forgetting that my dad couldn't speak. For a while they were talking about stents and recovery. I had this persistent belief that if they could help then he would be like he was before he developed PPA/FTD. It is all very surreal right now.
My dad was 84 and he lived in his own house, independently until the day before he died. He was driving the car until two weeks ago when he felt his vision was not good enough to drive. He had, finally, consented to go to the eye doctor but he never made it to the appointment. He never knew how bad the Frontotemporal Dementia could get. I am very sad right now but I think it was a blessing that he didn't have to end up like my mother and that he lived a long life. I feel most sorry for my mother; she will miss his daily visits. My parents were married on Thanksgiving; it would have been 60 years this fall. We are going to keep the house through Thanksgiving and bring her home for the holiday.
If you made it this far, thanks for listening. Although my parents both have lived long lives; I find it very cruel the illnesses they have suffered at the end.
I am very aware that people with ALS suffer these cruelties at a young age and that makes ALS all the more insidious. I will continue to keep those with ALS in my heart and I will be pushing for a cure for each of you as well as those with PSP & FTD. Thank you for the selfless way you have helped me over the years and I hope you won't mind if I continue to visit.
-Loraine