posted on June 14, 2006 03:06:44 PM
From the PSP board-READ AND HAVE A GOOD DAY!
My Dad has entered the final stage of this terrible disease. He has been suffering through all of the stages of this disease for the past 7 years. His swallowing capability has slowly diminished over the past 6 months. He has been on a puried diet since January. This past Saturday, he finally lost the ability to swallow at all. He has refused all food and drink. We try to spoon feed small amounts of thickened liquid, but he just chokes. As per his wishes we are not using a feeding tube, and we will not be using an IV for hydration. He is in a nursing home and is receiving medication for comfort. We wet his mouth so that it is not uncomfortably dry, but anymore than that, and he drowns and chokes. We have made all of the arrangements to have his brain donated to the UCLA brain donation program.
At this point, he still has his eyes open sometimes. He has not been able to communicate verbally for several months. He can still occasionally squeeze our hands. His breathing is very heavy. Coughing is almost impossible, but he manages it occasionally. We are using a suction machine for the heavy saliva build up, and he has oxygen to ease his breathing. We are being very diligent with the suction, because he seems to start "drowning" in saliva and seems to panic. At this stage we believe it is all about creating as much comfort as possible. Our pastor came to visit today to walk him through this final stage and provide assurance of his faith.
Our family is standing watch, and we pray for a speedy end to this long suffering process.
/ lets all stop whining !! /
posted on June 14, 2006 04:48:41 PM
hwahwa is this your relative or someone from that board? Hope it is not you.
**************
I married my wife for her looks...but not the
ones she's been giving me lately!
posted on June 14, 2006 04:52:48 PM
Is this your dad? Sorry to sound stupid but what is PSP? Is it on ebay? I am so sorry the hear that anyone has to go through this. It takes so much energy and strength to deal with it. Trying to get through one day at a time.
posted on June 14, 2006 05:07:18 PM
Sorry to hear about your dad Stop. Nothing can ease your pain but believing he will be going to a better place,its the only thing that helped me get through watching my mother pass. You and your family are in our thoughts and prayer.
posted on June 14, 2006 07:20:49 PM
No,this person is not my relative,but I do know a person who has this disease.
This is from the PSP forum,PSP stands for progressive supranucleus palsy,a neuro degenerative disease which was misdiagnosed as Parkinson until 1960s,there is no cure and no medication for it.
They dont even know what causes the disease,altho the speculation is 'insecticide'.
posted on June 14, 2006 08:45:01 PM
Just sad to think someone is suffering so greatly from exposure to insecticides. Progress is not always good. Send them our prayers anyway Stop , I'm sure they need them.
posted on June 14, 2006 10:00:42 PM
hwahwa,I know what it's like. I feel so helpless watching my friend change from such a vital person to one who is very terminal. One of my friends, very close friends, has amyloidosis. This desease has the immune system attacking the organs. His heart is failing because it is literally being dissolved. My heart goes out to you and your friend and family. I know what it's like. They don't know what causes this disease either but it is common for those who live in agricultural areas. this person spent childhood living on a farm.
posted on June 15, 2006 11:13:48 AM
Stop, my Dad was diagnosed with CBD 2 years ago. Very similar to PSP just different symptoms. I sometimes read the PSP board. I don't think it is a self pity party. The board is simply a place where families go to vent, share and try to find some meaning.
I know, sometimes you just want to scream "get over it!" But we all grieve in different ways and if this is the first time the caregiver has dealt with death personally, they do tend to make it about their needs instead of about the needs and desires of the patient.
There are no cut and dried answers about how to deal with death and its processes. Each individual has to figure out how to deal with it on their own terms. The end result is every one learns something from the experience. or maybe they won't.
Either way, don't be afraid to ask for help when the going get tough. No one can do it alone and maintain their sanity.
