My dad's wife is a couple years younger than me, they've been married over 30 years, my Mama died at 34 from aggressive cancer. Dad's wife and me are in our early 50s. Daddy is 81 and bedbound with psp, for months. Several months ago she and I discussed the possibility of a feeding tube if it was ever needed, and we agreed we couldn't watch him dehydrate/starve to death. Then today their family doctor made a house call. The man is retiring next year and if you ask me he's seen a few too many patients get old and die and he's callous. He asked Daddy, "So C, do you still enjoy living?" Daddy said yes. A few minutes later doc said, "I can hardly believe you said you still enjoy living. Must not take much to make you happy." Oooook. THEN doc asked him, "If it comes to it and you need a feeding tube to eat do you want that or do you want to just go on to Heaven?" HMMMM. Very bias way to word it in my opinion. Since this whole psp nightmare has started, Daddy has had at least one mini-stroke and the psp has affected his brain in more ways than bodily BUT he's still there and able to communicate with words, albeit not many words but enough that I know he's still "there," just not as much. So after the doc left, I said to his wife, "but we (her and I) talked about this and said we couldn't let him starve to death". I don't even remember what she said, I was/am in a state of horror and shock. Oh wait, that's when she mumbled something about, back when Daddy was talking more, he told her he wouldn't want resuscitation which I can agree with at this point, but she said he also said he wouldn't want the tube. Whoa. So! Why didn't she say this when she and I discussed it in vivid detail several months ago? It doesn't make sense! And, kind folks who are or who have walked the same hellish road of psp.. I truly don't want to offend anyone and I'm sure there are people here who've elected to forego the food tube. Your situation may be totally different and I don't look at YOUR decision in the same way I look at the decision about MY father. I mean, I don't judge anyone for these excruciating decisions. For MY Daddy though, no. I want the tube unless he's comatose or no brain activity!!!!! period! (or 5 exclamation marks haha couldn't resist)! I live in the home with them because I moved in to help take care of him 15 months ago, in the house where I grew up and haven't lived in for decades. I deserve to have some say in this but legally I doubt I have any right. I'm afraid she'll make me go talk to Daddy about it and, he's easily led, with the psp, ask a leading question and you'll get the answer you're looking for, very slowly. Anyway I don't like anyone putting thoughts of death in his mind not one minute sooner than necessary. Am I wrong????? Am I totally overstepping my bounds with all of this? I'm the only adult kid out of 3 who has not ever been out of contact with my father all my life. He loves me some kinda fierce. Oh my God I'm going to miss his love but let's not let me digress. (break to cry oh no) Here is a quote from Lord only knows where, somewhere online, and it describes exactly how I feel about this issue. I'd love to hear from any of you but don't even read it if you're sensitive about this subject and I'm sure some people rightfully, are. The quote: Removing their food or water isn't LETTING them die, it's MAKING them die. Nor is this type of death "putting them out of their misery," as some would say. Instead, it's putting them INTO misery, the misery of dying in an excruciating manner. How could dying of thirst or starvation be considered a peaceful death? THE END of quote. I'm freaking out because Daddy's swallowing has gotten more difficult and of course he eats very slowly. He's eating considerably less but hasn't lost noticeable weight and doesn't need to. He sometimes has to be reminded to chew, OR to swallow. We've yet to have to use a suction machine but he's almost choked or choked a little, several times. I'm afraid that this serious choking could begin at any day, tomorrow, a wk from now, so I need to speak up to his wife right??? I want to send her the quote, in a text or note so she can think about it before I see her tomorrow. OR.. what? I don't want to disrupt whatever peace my Dad has in these last days weeks months of his life so it's hard to discuss it vocally because he could overhear. Oh and doc said his heart sounds great and BP was 120/70. I don't want it to be ever but... when? when will it be. And tube or no tube, his wish or too leading of a question for his condition, shall I stand up to his wife who may be ready to get on with her life or not i hate to think that but, there it is. So many hard questions. Thanks for reading.
Withholding Fluids and Food, what's right ... - PSP Association
Withholding Fluids and Food, what's right what's wrong please help!
P.S. I'm sorry that last ^ got so long and thanks if you read it. ~Sheila
Shelia everyone is going to have there own opinion on this, we spoke to George about having a peg fitted he said no he doesn't want it, it will be hard when the time comes, that is why we asked him before, and professor at the hospital asked him, also speech therapist. Doctor that came in seemed insensitive disgusting to talk to a terminally ill person like that. I feel sad for you, you should of spoken to your dad before, could you not speak to him when she is not there? Have not got an answer for you, hopefully you will be given a chance to voice your opinion, and be heard. Sending you a big hug, it's hard this PSP, takes everything away from everyone, not just the person living with it, but everyone else around it I hate it so much, such hard decisions to make when you love someone so much . Yvonne xxxxx
Oh Sheila, I am so sorry you are feeling this way. I guess we all are, if we thought about it.
I too am totally confused about peg feeding. At the beginning, I was very anti, but now I don't know. S, when asked a year ago, said yes he would want a peg, but now is saying no. He is down to pureed foods and thickened drinks and I don't think we are far off the critical day of decision.
One minute I think, definitely NO. If he can't swallow, his body is giving into this desease and artificial feeding would keep him alive and prevent him from dying. The next, like you, I don't want him to die of starvation. I don't think it would get to that stage, as I am sure his organs would pack in quite quickly.
At the moment S still has some quality of life, is not bed bound, gets pleasure from watching sport on TV. So there is an argument to say peg feed if necessary, but when he becomes bed bound and not able to follow anything, then I don't know.
Sorry, I am rambling, but as you can see, I am just as confused. All I do know, is I will respect any decision S makes, what ever I think, when that day comes and try not to spend too much time worrying about it, until then. I guess that's all you can do as well.
Remember today has enough challanges, without worrying about tomorrow.
Sending very big hug and much love
Lots of love
Heady
This is such a difficult one isn't it. I am so sorry Shiela that you are wrestling with it and have been upset by an insensitive doctor.
D and I had many discussions about this in the earlier stages and we wrote an Advance Care Plan together setting out what his wishes were in several areas. We also got Power of Attorney for Health and Welfare which nominated myself and our eldest daughter as his Attorneys ( to make decisions if he became unable to). However, in respect of the feeding tube, he and I were both unable to come to a conclusion at that stage. Having thought about it long and hard we both felt that it would depend entirely on his quality of life at the time when he stopped being able to get sufficient nutrition by mouth so we left that question 'to be decided'.
In the end, about a month of so before his death as it turned out, he was able to say that he now didn't want one as he felt he was ready to 'go'. When he eventually stopped being able to swallow I asked him again and, although not able to speak by then, he indicated that he was sure he didn't want one by squeezing my hand (his way of saying yes). By then he could not speak, move even his hands, hold his head up, or see and was doubly incontinent. He could hear and could understand what was being said.
Of course it is so hard to assess quality of life - see the most interesting recent post by Jean (Doglinton) and the thought-provoking range of replies. I think that it is the most important thing we can do for our cared for to ensure that their wishes are carried out or to make the decision if they cannot communicate what they want. Doing that is more difficult than ANY of the other difficult things we have to do as carers, but as a wife, husband or child, it is the ultimate expression of love.
I would urge all of you in the early stages to have the discussion, make the plan (even if the answer is tbd), decide who has the responsibility to make decisions in the end. It is always going to be impossibly hard but at least that way it helps to avoid a little bit of the guilt and self-analysis that will follow.
Sheila I hope you can reach a conclusion that you can all feel at peace with.
Vicki x
Dear Yvonne, Heady and Vicki, thank you all for your very thoughtful sensitive replies. I'm going to search for the other thread about this subject, that you suggested Vicki. God bless you and yours, ladies, and thank you again. ~Sheila
Not an easy one to answer; my husband has a PEG tube, but he is also only 56 years old and has his faculties...though not easily expressed. However , If B said no PEG tube, I would have honored it......I myself, am not going to have one if ever there comes a need.....If there was no such thing as the PEG tube....would the individual die of the malady thereof? If the answer is yes, then not putting a PEG tube in only allows (not make) the inevitable to happen.....And this is where I think we need to get to....embracing the inevitable. Preparing ourselves mentally, emotionally, and especially spiritually.... will be tantamount to our survival.
You sound like such a wonderful daughter. One willing to pretty much give up her own life for her dads......that's love....So for now , have a quiet talk with daddy It may not be too leading of a question; tell him you accept his decision and will always be there for him....Then talk to his wife in a respectable conversation the wishes of your dad and that you will be there for her in whatever ways she needs you etc. I would also get informed on palliative care and see what it takes when one says no to tube feeding......it's much more humane than starving to death.....
In the mean time I hope you are taking care of yourself. Sleep, exercise, take walks, eat well/ eat fun, deep breaths, and prayer.
Im sorry you have to go through this...
AVB
If any of you lack wisdom, let him ask of God, who gives to all men liberally without reproach; and it shall be given to him James 1:5
Peace I leave with you , my peace I give to you: not as the world gives do give I to you . Let not your heart be troubled, nor let it be afraid. John 14:27
When the poor and needy seek water, and there is none, and their tongue faileth for thirst, I the Lord will hear them. I the God of Israel will not forsake them. Isaiah 41:17 (remember GMD, if you're in Christ, this is His promise!!!!)
This is such a sad post.
I hear how much you can't bear to lose your much loved father.
There isn't a right or wrong.
Chris and I have always talked openly about these issues. We don't have religious beliefs. He was sure he didn't want a peg.
He is 83 next week and dying is nearer for us all.
But I have realised that what we regard as "quality of life " changes when we are there.
For me the bottom line about how we die is the wishes of the patient.
It is unfortunate that the doctor was so insensitive. I think it is possible for some-one to be ready to die without life being intolerable.
It seems to me that the big issue is you feeling you are being excluded by your father and step-mother and feeling very hurt.
Perhaps it would help if you were able to talk about this to her and accept that she may see things differently.
My heart goes out to you. It is very painful
Love, Jean x
I DO feel hurt to be excluded by this decision but what's breaking me in two is the thought of how he'll feel as he dies from dehydration, which is what would happen before starvation. He survived so many HARD falls on his head, bleeding and unable to get up from the floor, he has survived being bedbound for months, is surviving double incontinence, losing the ability to brilliantly THINK, or do much of anything. He's FOUGHT to stay alive. Now for him to die because nobody is supplying him with water or food when he's unable to swallow? I can't bear it.
I did indeed try talking to his wife today and got nowhere. She has no answer for why she didn't tell me "his wishes" about the food tube when she and I discussed it at length months ago. Part of me is considering stopping eating and drinking at the same moment it's withheld from my dad so I can tell his wife minute by minute how it FEELS.
I was once a beauty contestant finalist, did modeling and have turned many a man's head, but I'm 3x divorced and over it, just done. Married first time when I was only 16 just after my Mom died at 34. I've been poor and have pulled myself out of poverty, without help from anyone, only to fall into it again and rise from it again over and over, but my daughter is living her own life and doesn't need me anymore. The biggest reason I can find to live is my dog, how's that for pitiful. If withholding food and fluids from my Dad is ok and isn't similar to suicide or murder then why is it wrong for ME? I don't want to live through this.
I so fully agree with what you said Jean, that our perception of quality of life changes once we are there. People here understand that but I don't think most others do. Sorry folks to sound SO depressed. I don't mean to bring anyone down. I know I sound stupid to consider joining Daddy if he's being starved but I'm not sure I care if it's dumb or not. I just don't think I'll ever recover from this. I've lived it my whole life, missing Mama. Living is too hard.
I feel your pain Sheila. I remember it taking several hours to feed mum each meal. His swallow is no longer under his conscious control, but it will continue as an UNconscious reflex. Reminding him to swallow may be counter productive, the more he tries to swallow, the less able he might be (a bit like "trying" to sneeze) The PEG operation might, or might not, be successful. My mum had the operation. It was done under local anaesthetic, which must have been awful, and then contracted a hospital infection (C-Difficile) We stayed in hospital for 3 weeks while they dealt with that. Two weeks after we got home, she developed pneumonia and died. I have heard much happier stories, and know that it can be successful and can lead to an improved quality of life, and can keep your loved one here for another couple of years, but it is far from a certainty. You do have today though. Try to get him in the sunshine. Tell him a joke. Expose him to positive emotions. Be proud of yourself. You are doing the right thing. Love and warm wishes to all 3 of you.
Janet
Thank you formercarer, words to learn and live by! She needs us
Baby, baby, baby , baby. I think if you were to go to a psychologist today, they would deem you depressed.....and that is ok....in that you have every reason to feel this way but really no reason to stay this way. So darlin', please seek your own counsel cuz your step mom is not; your daddy cannot; and your other family are not going to help you...get someone who will help you get through this....we are hear for you but you may need someone more ....tangible.....
Tomorrow is Monday Let tomorrow be the first day of the rest of your life.....get help get it now.....no more sorrow pain or giving up......
We love you here and are ALL going through the same pain......
Take care and God Speed
AVB
Well said AVB!
Shelia, I did reply along the same lines as AVB, but it got lost in never,never land. I agree with AVB, you HAVE to look after yourself. Lots of us have been down this road, seeking a counsellor. I had six months worth of sessions, that helped enormously. Am now about to start with some music therapy. This therapist reckons I have Post Traumatic Stress Syndrome, due to being on full alert for so many years.
You need to take time for yourself. We all need to look after ourselves, have someone to talk to, make sure our health is in tip top condition. Only then can we start looking after our loved ones.
Sending very large hug and much love
Lots of love
Heady
Agree with Heady. Seek counselling.
You have so much to grieve for.
Love from Jean x
I understand how you feel. I was faced with this situation with my man over a period of 2 months. His timeframe was totally different from the one you all face as my man had CBD not PSP.
I had all the heartache you are going through. I realized that it was not my decision to make. If your loved one does not want to eat, or had difficulty swallowing, then make sure he had food that he likes and wants to eat. Mine lived on jelly, ice cream, yoghurt, soups, pureed fruits, and fortified milk drinks for the last month. Medications became an issue as it was difficult to swallow them so they were stopped.
Quality of life was more important than anything else. Most other threatening issues were of minor importance in the short term, therefore not medicating was also not a problem.
In other words, we were all of the opinion that life was going in only one direction. We did not know how long and we differed in that. The doctors said 6 months. I felt it was likely to be considerably less.
Most important is that it is the patient's decision to make, not yours, so you need to respect whatever he decides. It is so hard, I know, but I found it easier once I had accepted that decision.
Hospice care will also help.
My thoughts and sympathies are with you, and my love to you both. I hope you find solutions that you are both comfy with.
Hugs
Jen
For my wife and I, the PEG was a true blessing. Kim was in her mid-forties when she came down with PSP and had the tube inserted at age 52. Prior to the tube,she was rapidly losing weight and choking constantly. After the tube, I'd still let her eat a little for a while and towards the end,just an occasional chocolate Kiss. It definitely extended her life by almost 2 years. We did have this talk about a PEG, several years prior. But having a talk later with this disease is more difficult. With PSP, most patients become very agreeable with anything and lose interest is making decisions. At least that was the case for me and what I have seen with others in the support group that I facilitate monthly. The PEG insertion is such a simple procedure and is so easy to administer food and medicines. I think some people see this as if you're dependent on a machine, like a respirator. But that's totally different and not something I would have wanted for my wife.
I'll be praying for you and your family and the right decision will be made for your daddy.
Ketchupman
You know what Gonnamissdaddy,
There is something new every day who knows what tomarrow will bring If hes not brain dead then FIGHT for him he cant do it him self. Be his voice to hell with everyone else AS LONG AS YOU FIGHT WITH HIM , That means working with him, doing exercises, bathing feeding. take him to the local pool warm water you will see your daddy come back to life in a warm water pool I take my Aunt all the time , she can walk again , and most of all it puts a smile on her face. Im sorry for those who just want to let go and go on but unless our higher power decides this is the day death is not an option my aunt has had PSP for 14 years now there is nothing wrong with her brain only body functions, we had the peg tub put it because swollowing was getting difficult and still is the peg for me and her made it easier, to make sure she gets the nutritun she needs I still let her have soft stuff I know what you mean about the swallowing I have had to stick my whole fist down her throat a time or two not fun you just have to stick to like pudding or jello mash their food real good and feed it to them or they will stick the whole thing in the mouth. Its hard and gets harder everyday Im sorry if I offend any one but that is your daddy tell his wife to fuck off if she does not want to work with you . If she does than by all means for get what I just said. You only get one daddy and that one is yours. Lay in bed and brush his hair back, read him a book or just suck on a popcicle togather. BUT FIGHT
LOTS OF HUGS
KRYSTE
Sheila
I am in a similar position as my husband said he didn't want a feeding tube a couple if months ago. He looked scared stiff at the prospect of that happening. At the time I felt I had to go along with that. Now however I am really struggling with the idea. I am worried sick he will be in agony. I have no idea who would put him out of that agony.
I was hoping he would go to the Hospice but having spoken to them the other day I was told as he is no longer under the care of the Hospice they probably wouldn't be able to find him a bed!I He's no longer under their care because they stopped him from going to the Day Care Centre.
They have offered me a place for him twice in the past month but I have had to turn it down as I don't think it would now be suitable for him due to the deteration over the past couple of months.
Today I went to see him and he looked better than I have seen him for ages! He is on the patch to clear up secretions now and it appears to be working. Fingers crossed he won't have a bad reaction.
So back to your problem. Can you talk to your Dad still? I know you said you didn't want to but we all have to have these difficult conversations sadly. Legally I guess his wife is next of kin and maybe has power of attorney? So this maybe something you are not going to win? Can you find out who would take care of him if he does refuse a PEG? Sorry but I haven't got the answer either! It's so cruel to have to make such a decision?
Marie
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