Helping Those Who Care for Parkinson's Patients
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My FIL spiked another fever yesterday with his pneumonia. My husband had a long and very good talk with his Dr. He said that the fever is most likely due to the fact that he is still aspirating even though they have made adjustments to his diet at the hospital. The Dr forwarned us that we may need to make the decision in the near future regarding the feeding tube. I realize that having a feeding tube will be prolonging his life and his only pleasure today is with eating his sweets. With Spring just around the corner, I know he will be able to find a little more pleasure with gardening. Not sure how much strength he will have, but they do have modified planters at the care center. He is very insistent about being full code. I guess my question is, if my FIL agrees to the feeding tube, and he is willing to live this way, is it a bad thing? His medications today are helping him with his psychosis. How mobile can one be with a feeding tube? |
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| Big decision and one that only you and your FIL can make. Everyone has different views on the subject but it boils down to a very personal decision. The feeding tube will prolong his life in so much as he will no longer be aspirating food. It comes down to quality of life and the fact that a feeding tube will only prolong the ultimate result of PD. |
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| rajenriver, if I were in your shoes, I'd let my FIL make that decision if he is able to after being informed by his doctor and having all of his questions answered. I do not know much about a feeding tube but feel that is a decision to be made by the person involved and not a caregiver if at all possible. Just my thoughts. I truly hope I never have to make that decision for my Dad. I think I'll discuss it with him now just in case he cannot make that decision if it comes up. God bless, Mary |
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| Very good idea, Mary. I encourage everyone to have this discussion while the person is mentally capable of making a sound decision. I think everyone should have directives in a Living Will. More likely than not all of us will eventually be faced with decisions like this. |
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| You mention your FIL has psychosis. I don't know if this means he has dementia. I have heard that often dementia patients pull out the feeding tube. I remain confused by the benefit of feeding tubes. They don't prevent aspiration of normal secretions. I've also read past posts which indicated the doctor said it was a must, the family refused and the patient did fine with a modified diet. |
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| Annwood-Whats your best estimate of the percentage of PD patients who eventually will be advised to get a feeding tube? |
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| I have not posted in a long time but I just wanted to say that it has been almost 2 years now since my husband had a feeding tube put in. At the time he had been hospitalized for aspitation pnemonia. The first day he was in the hospital I had left briefly to go home and when I came back they had inserted a tube in his nose for medications. However they had an order for nothing by mouth. Which meant he could have nothing to eat or drink. I was told that the only way that he could get nourishment was if they put a feeding tube in. Of course we had never talked about this. Not a good thing. I think the reason that he was aspirating was that he was having trouble swallowing his meds and somedays he would sleep most of the day and take very little medication. In the hospital he keep saying that he was hungry. I felt that I had no choice. At first after the tube was put in he was on the liquid nourishment through the tube, but after awhile since he was getting his medicatons through the tube he was able to eat. He now only takes his medication through his tube. If he did not have the tube he would not be able to get his medication and would not be able to eat. Some days I still question if I made the right decision. When he is is haveing a somewhat good day I think I did. When he is haveing a bad day I think maybe I didn't. I think if he could only get nourishment through the tube and not be able to eat by mouth he would not want to live like that but since he can still eat I think he still gets some enjoyment out of life. He has gained 40 pounds since the tube was put in. I feel like I am rambeling. I don't know if any of this will help anyone. |
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| I don't have any figures on the number of PD pts who get feeding tubes. I think more often than not the decision is to not put one in. I also know that dementia complicates things because the pt has a tendency to pull out the tube. |
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My FIL has been sleeping pretty continuously for the last 2-3 days. He is also still running a fever and his lungs are very full. He has not had any of his meds for about 2 days. He has been diagnosed with schitzophrenia and PD dementia so we are concerned that he hasn't received his meds. We are being told that since he is in a hospital setting, that they will be able to monitor it more closely. Several of his meds are tranquilizing, so it is odd that he is out most of the day even without them. I went to the hospital in the aft so I could catch his Dr for a long talk. When I left, I had the understanding that we would have the weekend to make a decision about the feeding tube. In the evening, we went back with our kids to see him, and he was awake although very groggy. He thought it was 7:00 in the morning. His nose was bleeding. Apparently he had woken up and had agreed to the tube which they had attempted to put in through his nose and were unsuccessful. They wanted to do this to be able to give him his meds through the feeding tube like you said happened to you Pikleine. They are going to try the feeding tube again through his nose this morning only using a different procedure. I guess I am hoping for the same outcome that you had Pikleine. If we can get him better from the pneumonia, then maybe with and adjusted diet, he will be able to eat through the mouth, too. We have a week with the nose feeding tube to decide before we would have the PEG tube done. I think that swallowing the meds has been the most difficult thing for him to do. I did a bunch of googling yesterday and in addition to the dementia and saliva aspiration possibilities, there were studies that showed that there was minimal difference with death rates from pneumonia with or without having the tubes inserted. I guess the biggest thing right now that is driving us this is that he did agree to the tube and he does want to get better. My husband and I knew that it could come to this, but when it becomes a reality, you are never ready for it. |
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| Nothing is ever black and white with this disease. My heart goes out to you having to make the feeding tube decision. How strong we must be to deal with this. |
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The weekend proved to be very difficult. They tried about 3 times to get a feeding tube into him and every time they couldn't get past the epiglottis. It kept going into his lungs. The Dr's are not allowing him to have anything to eat. He is not understanding this and thinks that the Dr's said he could still drink water. He was in a high state of agitation over wanting a drink this weekend so they let my huband give him thickened water because he is the POA. Of course he aspirated again. I told him that if he eats or drinks anything, it will go into his lungs, his pneumonia will get worse and he will die. He asked to have another swallow test done, but we all know it will show the same thing. He insists that they showed him how to swallow and I told him that even with him doing what they showed him, it is not working. Due to his dementia, he is just plain and simple not capable of understanding his situation and the consequences. I guess I am hoping that after we get the PEG, which requires surgery, he gets his meds and we will be able to get him to the point of understanding. We are not putting much weight on this though. It may end up, that we let him have the foods he wants. It will be a tough call but at least we would know that we are abiding to his wishes. Before this happens, we are definately going to bring in Hospice! And the family to say good bye. -Jenny |
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| This is totally your decision. As I have said before I opted to not do the feeding tube and allowed myhusband to enjoy what time he had left. I would not put much stock in believing the meds will help his dementia. |
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Annwood I agree with you that his meds most likely won't help. It just stinks, doesn't it. I just want to make sure that when this is all over, my husband will be able to know that he did everything he could for his father. He is really hurting right now seeing his stubborn dad, wanting to stay alive, yet not being able to follow the Dr's directions. Thanks so much for your help and support everyone. I know I am posting a lot right now, but it really helps to write these things out and to know that there are others out there that have been through this, supporting us with your thoughts and comments. Thanks all, -Jenny |
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Hi Jenny: The feeding tube is a very personal decision and not an easy one. I agree with Ann we must weigh quality of life with quantity of life. I had to face that decision with my dad and we talked about it early on before his dementia became worse and he opted for no feeding tube if it came to that which it did. At the time, I doubted myself and questioned even though my Dad had already made that decision but now I am so happy he made the decision and I was not forced to. With me not wanting to let him go I don't know what I would have done if I had to make that decision at times like these it is hard to remove the emotion and think clearly. This is a hard one. I will keep you and yours in my prayers. Patti |
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| Thanks for your prayers. We got a call at 4:00 this morning that my FIL is spiking a fever. His oxygen level is low, too. His lungs are full and he is not very responsive. They are starting him on some different antibiotics but we are not feeling very encouraged. My husband is waiting right now for a call from the Dr. We are at the point of making the decision to engage hospice and stop the support we have been giving to him today. |
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| Do contact the hospice people, either way. He doesn't have to be close to dying. They are wonderfully helpful. |
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This is probably not needed info right now, with your FIL's situation declining so quickly. But I will add it in case anyone else is struggling with the feeding tube dilemma. My situation with my mother is almost exactly the same as pikleine's. We had a gastric feeding tube inserted over 2 years ago, after mom had a stroke and was unable to get enough calories on her own to give her the strength to do any physical therapy. The hope was that she would be able to recover from the paralysis of the stroke and walk again. After the tube was put in, she regained some strength but never recovered from the paralysis. She is still with us, immobile, in a nursing facility. She gets her meds and the majority of her calories through the tube, but she is able to eat some (for oral gratification). We actually were able to take her home for a short visit two weeks ago (first time out of the facility in over 2 years.) But she is only alert about 2-3 hours a day and recently her dementia as well as coughing is worsening. I, like pikleine, do not know if inserting the tube was for the better or not. It has prolonged her life with Parkinson's. Not improved it. Sometimes I'm glad about it, most times I'm conflicted. Someone suggested that if you do insert a feeding tube, that you give it a trial period. If after so much time, it hasn't helped the situation, you can remove it. However, IMO, removing it is WAAAAY harder of a decision, even if it was conditional. Things don't sound good for you all right now. May there be strength and peace given you during this time. Colette |
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We moved my FIL into hospice tonight. My FIL's temp was almost 104 today due to the pneumonia. They are working on getting the fever down but he was really struggling with breathing and was very weak. Not hardly opening his eyes. One thing we talked about with them was the fact that he is hallucinating. They will be able to still give him his psych meds through the feeding tube at the hospice. I just couldn't imagine how he would be feeling if he was hallucinating during this stage. I guess this is the reason God led us to do the tube. My husband is being so strong right now. Colette, with your words above, I really think he is at peace with this decision. Again, sorry for posting so much, but it helps knowing that you are all there for us. -Jenny |
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| Jenny - You are not posting too much. This is a very tough time for you and your family - I remember. I also remember that I got so much help from all of you. Glad we can return the favor. Listen to Hospice and believe what they tell you. They have so much experience with this type of situation and they will guide you through it. |
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Jenny - I'm keeping you and all your family in my prayers. The hospice careworkers are the best, and they will help you so much. We're all here for you, and in my opinion, you can never post too much! Kristine |
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| Jenny I am so sorry to hear of your struggles and worries right now I will keep you and yours in my prayers. |