I have done soul searching and research this week end about Kathryn’s living will. I do not want to lose her but at the same time I promised to abide by her wishes as expressed in her living will. Everything has reached a point where I am no longer sure if I am doing that or not.
She said in it that she wanted it to be known that it is her desire that her dying not be artificially prolonged if she is incapacitated and has a terminal condition or she has an end stage condition or if there is no reasonable probability of her recovery, and she directs that life prolonging procedures be with held when the application of such procedures would serve only to prolong artificially the process of dying and that she be permitted to die naturally with only the administration of medication or the performance of any medical procedures deemed necessary to provide me with comfort and care or to alleviate pain.
I have looked up the meanings of several words and am having a hard time understanding how they apply.
My questions are:
1. Is not feeding ones self a part of the natural progression of end-stage Alzheimer's?
2. In Kathryn’s case is assisted feeding improving her quality of life?
3. In Kathryn’s case is assisted feeding taking away her quality of life?
4. Would discontinuing assisted feeding maintain her dignity by keeping her comfortable and pain-free until her life ends naturally?
5. Is assisted oral feeding considered to be artificially prolonging her life?
Definitions I have found:
Incapacitated
Person temporarily or permanently impaired by mental and/or physical deficiency, disability, illness, or by the use of drugs to the extent he or she lacks sufficient understanding to make rational decisions or engage in responsible actions.
Procedure
1. A manner of proceeding; a way of performing or effecting something.
2. A series of steps taken to accomplish an end
Artificially 1. Brought about or caused by sociopolitical or other human-generated forces or influences.
2. Caused or produced by a human.
I am going to try to get hold of Kathryn’s Hospice Doctor today to assist me in figuring out if in my desire to not lose her I have exceeded Kathryn’s wishes as she stated in her living will. It is hard for me to know if I am being rational when it comes to Kathryn and because of that I am not sure if I am doing what my heart wants or what is in Kathryn's best interest in accordance with her living will. This much harder than I believed it would be.
One thing we all can be sure of there is no getting better,call Phranque he was in same position with his LO,the last week when my wife was in hospice she was fed the first day,after that she nodded off an never opened her eyes or even moved again until the last minute before she passed,its a hard call and only you can make the call
Jim, I suspect you know in your heart what Kathryn would have wished, but find yourself splitting hairs about language and definitions because you yourself are just not ready to let her go. We all understand the terrible burden you're dealing with in trying to decide what to do. Many of us with stars beside our names have dealt with similar gut-wrenching doubts, and nobody should presume to advise you what to do. I will, however, share with you something that I had posted to this board two days before my dear Frances passed, almost four years ago:
"She hasn't taken any food in the past three days, and probably only about 8 ounces of water in that time -- just a few small sips yesterday and none today. The hospice doctor visited on Tuesday and said that once they stop taking fluids, they usually die within five days, so we could be looking at this weekend. << SNIP>> Making the decision to not push her to eat was hard, notwithstanding assurances from the hospice folks that she doesn't experience hunger and thirst as we do. I have realized, intellectually, that pushing her to take a few more bites or sips could only serve to extend her life for a few more hours or days, and that these hours or days weren't really good ones -- not for her and not for us. But emotionally, it was so hard not to try -- I'd feel like I'd "won" a small victory if I got her to take a bite or a sip."
Thanks Gourdchipper, I would never ask anybody to make this decision for me I am the only one that can make it. I guess I am over thinking it. I was trying to find out how certain words either applied or did not. It appears it may now be out of my hands anyway. I just talked to the Hospice nurse and she said it appears that Kathryn is moving into the dying process now . She hasn’t a drink in 40 hours and only ate two cookies yesterday. This morning when I tried to give her just a small piece of a cookie with her meds in it she didn’t chew or anything. I’m not sure if she did finally eat it or if it just In her mouth.
Jim, whether you coax her into eating another cookie or not, just remember – you are not responsible for her death – the disease is. I’m so sorry you are losing your beloved wife- I’ll be praying for you both. You will both get to the other side of this, and Kathryn will be whole again. ((HUGS))
One question I don't hear you answering and one that I took great comfort in during this most trying time was: Would I want to be kept alive in the same condition Kathryn is in or would I want to go to the better place. I believe the main reason I could answer that question without hesitation is that my Jim and I had discussed this type of condition numerous times and we both were on the same page. I know I would not want to live if I were in that condition and I also knew Jim would not have wanted to live either. Bottom line...there was no hope for either of us....and I was the one that had to make the difficult decision. Maybe the question you need to ask yourself is what would you want Kathryn to do if your positions were reversed? Talking to the hospice dr. is a very good idea and I encourage you to do that. You are so much stronger then you realize.
You are constantly in our thoughts, hearts, and prayers Jim, both you and Kathryn. I cannot even imagine how this must be. Thank God for all these incredible people on this board.
Jim - to abide by your wifes wishes simply ask yourself this question "does she want to eat?" Offer food, assist her in any way necessary if she wants to eat but stop if she expresses no interest or produces any negative response. Let her response be your cue and you will always be abiding by her wishes. Don't worry about pushing for "one more bite" or "finish this up" and try very hard not to allow your self to worry about her consumption not being enough. Her calorie needs aren't high right now and it sounds like she is close to the point where the body starts to shut down. Some days will be more, some days will be less and it will reach the point when she stops eating at all. Peace to you both at this time and in the days and weeks to come.
jim its so very hard to be in this position. of course you want to hang on to your dear Kathryn as long as possible. but yes we must take a look at quality vs quantity of life remaining. i believe personally that all of us caregivers if the roll were reversed we would not want any prolonging the inevitable. i know i have thought long and hard as well on this very subject. my hospice dr and nurse have said you will know and they will as well, when the dying process begins and we should not force any further interventions as food or water, only to make them as comfortable/painfree as possible. i think you will know and your dear katherine will be the one to let you know the time is here. your hospice dr is a very qualified person to help you make the decisions now. best of luck, and prayers. divvi
Hospice came out today and evaluated her and they said if she doesn’t drink anything soon she will not last long. They believe she has entered the dying process already and do not expect her to recover any and that her decline has gained speed.
There is nothing that can be done to assist her at this point. Even if I tried to pour water into her. which won't, they said could drown and if I tried to make her take food she could choke or aspirate.
Jim, my heart is breaking for you. Hold her, whisper in her ear, touch her. May God grant you the peace that passes understanding and comfort you. May Kathryn have a peaceful passing. You both are in my prayers daily. What a wonderful Love story your lives are.
Jim, I will pray for your strength. I think you have done everything right to help Kathryn through this journey, and shouldn't question any of your choices. May you both find peace.
My husband lasted five days without food or water. Hospice put vaseline on his lips for the dryness. He was also given morphine. Jim, you are in my thoughts.
Jim, my wife is no where near where yours is, but yesterday I had to make similar decisions. She had finished eating, feeding herself as usual. When I went to get her up to go back to our apartment, she passed out and was completely unresponsive. When the nurses arrived they asked if I wanted to call the ambulance. It was a hard decision, since I don't want her to go through what others have, but also I don't want to lose her. Fortunately she came out of it, and today is back to her usual, so I didn't have to make the decision. I'm not sure which way I would have gone. I have no idea what caused her to pass out.
Dear Jim, you have been so loving and brave through this difficult journey with your beloved Kathryn. No one could have cherished her more or cared for her better than you, her loving, devoted husband. My heart breaks for you during this impossibly difficult time. I am praying that you boh find peace during this heartbreaking time. Much love to you both.
My thoughts and prayers are with you,soon she'll just slide away to a better place but until she does,talk to her hold her hand tell her you love her,until that heart stops she's still with you,God Bless you both
Jim, My mom's case is almost identical to what you are describing. With regard to my mother's wishes, they are the same as Kathryn stated. So in my mom's case, we did not go with any feeding tube. We gave her water or a little ensure by using a little sponge on a stick. It was not enough to provide nourishment but just a bit of comfort. We used Vasaline on her lips to keep them moist...whatever it might take to prevent too much of a dry mouth feeling. Other than that, meds to keep her comfortable were used. It was a tough decision to make but in truth there was no way she could really eat anything. I would say if Kathryn seems a little interested in any kind of food or fluid to drink or eat, give it to her as she may just enjoy a bit of a taste of something. But I would not force anything. Read her body language, she might respond to something like that to give comfort. There will be a point where she won't want anything at all..
You are doing everything you can to keep your Sweetheart comfortable and well cared for and she knows this. You are doing everything just as she would want. Please don't worry about this too much. Just be present with Kathryn as much as you can.
Dearest friend., Your comments remind me of the last week my dear husband was alive. His lips were so dry, and his mouth was so dry.. and I would use a straw., with my finger on the top.. picking up a little water and dropping it in his mouth.. just a little bit. The Hospice nurse told me the same thing. He could strangle on the water.. Further, she told me that as the dying process moves on, the stomach stops digesting food, the kidneys shut down, the swallowing reflex ceases.. and I was better off just swabbing the inside of his mouth with the little sponge swabs they provided..
I saw the skin on his arms and back begin to sag with dehydration., and it broke my heart. I wanted so much to help him., but they told me that nothing I could do was going to help. ... and so... we waited. I listened to his breathing, I held his hand. She even said rubbing his arms and back could be painful during that stage. He was slipping away and leaving me behind.
But it was what he would have wanted. His living will was specific..down to not using any means to keep him alive when he could never get better. So we just used the morphine, and the other medicine (?) that dried up the congestion and gurgling in his throat.
I said before, I've walked your walk as have many others with stars after their names...We know, we care, and we're all hurting with you. The pain you feel is familiar to us. Stay strong...God Bless You Both.
Nancy B* your comment was said beautifully..and with such gentleness. I entirely agree with what you have said. Jim, you have been and are a wonderful, loving caregiver...stay strong...God is blessing you both.
I for one can tell you all that are posting and giving praise to Jim how pleased he must be to know that we all really do care for him and Kathryn and our thoughts and prayers are with him. It was such a comfort to me to know that my "family" here was with me during those final days. I am so pleased that so many do care when many times we think we are alone. A personal thanks to all of you from one who knows how important these comments have been and will continue to be for Jim and his dw.
During the last 48 hours of his life my husband's world turned on a dime. He had been in an ALF for only six days when he died.
I kept vigil for about 14 hours that night-morning. Toward the middle of the night his condition rapidly changed. He was making sounds but they really were not words, at least not that I could understand. I thought, as a last gesture of comfort, could he not be fed or given something to drink?
When the hospice nurse came she explained that what I was thinking of as sustenance was really just, if anything, going to prolong my husband's life for a very short period of time. She also explained he could also easily aspirate, which despite all the morphine on the planet would cause him far more discomfort than eliminating feeding.
As you mentioned considering Kathryn's living will my husband had executed that, and in his own writing stated he wanted no artificial means of nourishment or pharmaceutical intervention that would stimulate his appetite or thirst. It also included his wishes for full body donation with cremation to follow. It gave me comfort, especially to know that he had so completely thought this out.
I can't tell you how many times I read ane re-read this. It was like him reaching out and saying "the time is now and I trust you to do these things." And so I did.
Nancy B*, I had to call Hospice again last night because Kathryn just looked so bad when I went to give her some water in the little syringe. I couldn’t even get her to move her lips so I could put it in side her lip. The nurse came checked her out and her pulse and blood pressure were both this strong but her hands were so cold they could not get a read on her oxygen even after trying to warm them.
When she finished up with Kathryn she asked me if we could step outside talk for a minute. When we got outside she explained to me almost word for word what you just said above in your first paragraph. I already knew it but it sounds different when they say it compared to when I was thinking or reading it myself.
This decline started Saturday and it seems to me like she is sinking so very fast. I feel like Saturday was only a few hours ago some of the time and like it was a week ago the rest of the time.
Kathryn’s Brother stopped by last night and he wanted to give her some water or do something for her and I explained what I had been told earlier in the day but I could tell he still wanted to. But he was there when the last nurse came and told me everything again. He thanked her and admitted he really wanted to give her the water.
She told him and me that every step I took while he was there was the exactly right thing to do and that I have been the best caregiver they had seen in a long time and that they wanted to thank me for the care I have given Kathryn during all of this. At that moment it is the hardest thing I have ever done to not just break down completely.
It took me a couple of minutes to get it back under control. I have been sitting here all night just watching her breath. Her breathing is so shallow it is almost impossible to see anymore.
I cry all over again when I read what your going thru as I would bet most here who had the same expierenced do,this gave me comfort when LO passed perhaps it will help you in your time of need
I'm Free Don't grieve for me,for now I'm free I'mfollowing the path God laid for me. I took his hand when I heard him call I turned my back an left it all.
I could not stay another day To laugh,to love,to work or play. Tasks left undone must stay that way, I found that peace at the end of day.
If my parting has left a void, Then fill it with remembed joy. A friendship shared,a laugh,a kiss, Ah yes those things I too shall miss
Be not burdened with times of sorrow, I wish you the sunshine of tomorrow. My lifes been full.I've savored much, Good friends,good times,a loved ones touch.
Perhaps my time seemed all too brief, Don't legthen it now with undue grief. Lift up your hearts and share with me I'm with God now,I've been set free Author Unknown
Jim..You are in my prayers. Entering Heaven is extremely hard for everyone except the person going through the Gate. My heart is with you, and I hope my prayers will sustain you a bit.
The hospice nurse has arranged for transportation to move Kathryn to the Hospice facility at around 2:00pm today. Kathryn had made it known that she didn't want to die at home early when we did our living wills right after she was diagnosed. I think because she knew I would never use that room again if she passed in it. I really doesn't matter because I will be moving shortly after because I will not stay in this house after she is gone any longer than I have to. Anyway, I will be at the Hospice facility with Kathryn. I don't know if the have the wireless internet there or not so I may or may not be able to get back on while I am there with Kathryn.
Want to say thanks to everybody for your support and I will talk to you later when I can.
Dear Jim. How thankful I am to your nurses that they are giving you sound and timely advice. Our nurses for my mom did this for us as well and the goal, I read in the notes later, was to prepare us for what is coming. While it didn't take the sting away, it reassured us we had done all we could to keep our mom comfortable. The breathing you described is just what I saw too....but it was gentle, no struggling. This is so important for her.
I do feel so badly for you that your beautiful wife is suffering this disease and that you are losing her inch by inch as others have done and some of us will face...in God's time.
We here in Joan's family are with you in thought, prayer and in our way in vigil with you. We appreciate it that you are comfortable enough to share these most precious days with us.
You have been and are the most wonderful caregiver and husband your lovely Kathryn could ever have found. We all wish with all our hearts we could take this pain from both of you. We are praying for your continued strength and peace and peace for Kathryn. Blessing be upon both of you.♡
Kathryn was moved to the Hospice facility and they have the wireless internet here at the Hospice facility. Kathryn is being taken good care of . They were able to increase her morphine and put a needle in her arm so they could give it to her directly into her vain so it is almost instant She is now comfortable and pain free and resting peacefully. I am going to stay here with her and they put another bed in her room for me to stay. The one more thing I noticed this afternoon is that the glow has left her eyes and they appear to now be glazed over. But the main thing is she is comfortable and pain free and I think because of that she is less likely to be scared also.
Everyone has done all things possible to make this a peaceful passing, and that is a blessing for all. May you be filled with peace that you have supported her with love throughout this long journey. The last thing I told Eric was, "I'll see you soon," and I believe that in the fullness of time, I will. God bless.
Jim: You have done a wonderful job care giving and now you know you are not alone. So glad they did the IV so she has no pain and you can rest easy knowing that. Both of you are in our prayers and may she have a peaceful passage with you at her side.
Jim, I am glad you are not totally alone with Kathryn during this very difficult period. I am so sorry you are facing another great loss in your life. Loving someone as you love Kathryn makes the pain unbearable when you see her begin to slip away from you. I will continue to pray for you both.