For those who have been following my family's journey...yes, my father is still in the facility (despite my mom's guilt of keeping him there). For the last several days, my dad has only been getting feedings of ensure through the PEG. Since I live across an ocean, I'm trying to figure out if this is signaling the time for me to go back home. There's this weight constantly on me, on my heart and mind.
Does anyone have experience with this stage, when the choking on saliva becomes so bad that not even puréed foods is possible/safe? How long are these tube feedings sustainable?
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Kalakingprince
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I have just added to your previous post before reading your latest in context.
Yes, I think you should be making you plans to visit now. Others will give you a better indication of time left than I can - but I suggest it may be weeks rather than months.
This may depend on care, treatment, bugs, mishaps and/or your dad.
Try and arrange leave - be it sickness, bereavement, or without pay - whatever will work for you without major disruption of the life you have made for yourself. You have to return to that afterwards! But there is a chasm of 'maybes' in between!
But do it soon! I hope all goes smoothly, as best it can!
Please tell your mum she should not feel guilty - though we all do in similar circumstances! We are only human! To do the best we can depends on how much we are stressed. With her loved husband in carers' hand she can be a wife again, and show her love without so much stress. Talk to him and remind him of the good times, and children that they share!
First words said to us at diagnosis were ' this is progressive but not predictive' those words have come back to me time and time again.
Rog has literally been on deaths door a couple of times, but yesterday we had a family lunch out!!!
Dad is obviously progressing downwards, the questions to ask yourself are realistically what time can you give re job etc. What would dad want you to do?
Us . Care givers are stronger than we look sometimes !!!!
Yes! It's like a roller coaster! So yesterday my dad was walking around the facility with his walker (his head and eyes constantly go up so we have to stop him and gently guide his head down, which then makes his eyes close and eyeballs "reset"). Then my mom gave him some air popped rice cracker (these thin ones that are sold in Asian grocery stores) and he was able to eat that and pudding and yogurt by mouth after days of not being able to eat by mouth! Thank the Lord. It seems like every time we think and worry that this is not looking good, he makes a turn for the "better" (our new version of normal). So it's challenging for me because the guilt is constant for being thousands of miles away and my head constantly being with my family and it's weird...constantly wondering, is this it? I hate this feeling and hate this disease.
From what I have read, it's about 9 months, on average, people last with a Peg. BUT that does depend of how far along your Father is in his journey. Could be weeks or even a year. There are only so many times you can stop the bus and run to him. Only you can answer when, if it's for your Dad, then go now, who knows where he will be next month. For your Mum, she is on her knees and will stay there, no matter what you do, but will always need you. For you, well you need to be there 24/7, but we know that's impossible. Steve's daughter lived with the same dilemma, the Gods were looking after her and he died when she was over for Christmas.
You will never get rid of your Mums guilt. It's the carers curse. Only the other day, someone stopped me to say how brilliantly I had cared for Steve. My only thoughts were, "but he still died!" Nothing or nobody will ever take that away.
I feel exactly the same. Keep thinking I should have fought harder for him. I think by the time he died I had no fight left to be honest. The only thing we can do is highlight this disease and other progressive neurological diseases and the total lack of understanding of doctors and nurses. They are totally ignorant about what people go through. When I get some energy back I am going to make sure they start to understand.
At Garry's funeral on Monday when the priest said about him having two terminal illnesses and how at the end he couldn't speak, I think it hit some people. Some were local politicians so now I want national politicians to understand and to take all of this seriously. Am I mad? I feel if I can get through to just a few people it will be Garry's legacy. He deserves people to understand what he went through. So do all our loved ones. I really feel strongly that we can do this for our loved ones. Tim made sure his MP got the message a couple of weeks ago. I am so tired I can't do anything at present...but I will. Early days I suppose? We buried Garry's ashes yesterday. So it's been a hard week and still is to be honest. I need to get my strength back first.
I have read predictions for tube feeding for PSP patients to be 18 months. My husband wanted everything done to keep him alive. He had a compulsion to pull the tube out and many trips to the hospital were necessary to have a new one inserted. Sometimes he was given a temporary tube instead of the more permanent enteral feeding tube.There is special food for enteral feeding. He lived another 14 months after he first accepted a feeding tube. He enjoyed being with his family even though he could no longer communicate or do anything for himself. He adapted well and actually died with pneumonia 6 years after being diagnosed. He was 72. Aspirated pneumonia is still possible with a feeding tube. In the end he could no longer breathe and his heart gave out with the effort.
Pneumonia is the time to worry. My husband had recovered from a few cases of pneumonia but eventually all his systems were weakened.
Being so far away I can understand your worry. If you can take time just to visit I would suggest you do so soon in order to have a quality visit with your Dad, don't wait til he is at Death's door.
visit now, make time and plan to stay longer later to support mom. Call as much as u can giving encouragement to mom now. My mom is in the hospital now, just had a tube removed they thought she had aspirated pneumonia, using a patch to control the saliva, she has a peg. Not sugar coating it, it gets worse. Remember they are in there even if they can't communicate. Let dad know you'll look after mom. God bless your family.
Dear kalakingprince, if the purpose of your trip would be to be there to be supportive during your father's last days, I would say wait. People can last easily over a year, some a few years, with PEG feeding. It is not in itself indicative of imminent death. The advice that you visit soon is I think based on the idea that you might want to see your father while he is most able to interact. That is a consideration. Only you can weigh these factors, but you also know there may be some family pressure on you to take your father out of the facility. I worry about you! The guilt is hard to manage, but it should not have the power to drive your decision. Sacrificing your life only makes two psp victims from one. Whatever you choose to do, choose as dispassionately as you can, and don't disregard your own life's value.
You always know what to say to bring me back down to level ground! God bless you abundantly! The guilt weighs me down tremendously. My mom wants to take him out of the facility at the end of May when we move her out of he big family house and into an apartment. She wants to bring him home to the apartment. My brother and I have tried to gently bring issues up to her...sometimes she has a hard time remembering how hard it was when he was home. This happened when he was in he rehab facility last Thanksgiving and then when he returned home...she didn't want to even deal with him. Luckily I was home for the holidays so I took over for a few weeks... it was after she remembered how hard it's gotten, (and also the fact we had to take him to the hospital on New Years for sticking his fingers in his butt to try and grab his poop from being constipated) that we were scrambling to find a facility that would take him. Only 1 facility would take him, which is where he is now. We remind my mom of these things but she seemed to have forgotten, I think the guilt of seeing him at the facility has taken over. My brother and I also get more anxious at the thought of her being alone with him at home...what if he falls on her again (as he's gotten more unstable and heavy) and she gets injured for a third time?? I still have flashbacks of her falling and getting knocked out unconscious on the 4th of July (why do all these incidents happen on holidays?? Ha!) and it terrifies me. If she brings him home, my brother and I both feel as though we are obligated to put our lives on hold to help her because she doesn't think she needs a nurse at all times. She also doesn't foresee herself being tired (until it's too late). I feel like I can't even live my life or enjoy anything for the past year or so...which sounds selfish...I walk around like a numb depressed zombie and can't focus on life, or enjoying anything around me. I have even been seriously considering leaving HI and been applying to jobs in the Bay Area to be closer, but have gotten no interviews. Recruiters and friends of mine working in the SF area are shocked...I just wonder if God is not opening this door for a reason. I've also had many friends and recruiters tell me I need to just make the move to SF and then find a job when I'm there. I want to do that since this is the time to try new things and adventures...but I know my mom will just tell me to move home and help care for dad. So I just feel stuck. Are we all just waiting for dad to ascend to heaven? It sounds so terrible. I so did not mean to ramble like this...so sorry!
It seems to me you know what is right for you to do. Hang on! Maybe you could suggest to your mother that the transitions are very hard for your father, as they are for anyone, of course, and that moving him again might not be good, as he is still adjusting to the new place. The new apartment would be strange for him, too, right? In any case, guilt is not a good decision maker. Is there any sort of friend or counselor who might help your mother see her way through this?
Wishing the best to you all in the rough time. Peace, ec
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