Kathryn is sleep about 80% of the time now. But she is home. She only drank about a cup and a half of water yesterday and ate less than 6 oz of Yoplait and a couple of cookies with medicine in them. She doesn't seem to know when someone is in the room with her but she does still enjoy music from the 50's. The good thing is she is not in any pain or discomfort any more. The bad thing is it is as if she isn't really there at all other than physically.
JimB You are in my thoughts and prayers. I read the boards daily and do not post often. I hope that when the time comes, I can be as caring and loving as you are. You are a great example of unconditional love. Thank you for sharing your life with us.
jim i used ABH for a while for dh as well. rub into arm, works well. with all the above meds i am happy she is now painfree. dont forget to use a glove when you rub that into her arm or you will be very very relaxed as well.:) best of luck as you move forward. divvi
divvi, that was the first thing they told me. I am very careful when applying it to us gloves. Thanks for the reminder. It does seem to help her over the course of the day. Two of the medicines in the ABH are also on the list above to take every four hours also as needed. She has now been asleep since yesterday around 7:00pm (16 hours). But she had already been sleeping that long and longer prior to going the Hospice care unit so I am not surprised. I think she may sleep even more now because she is eating and drinking so little she must be getting weaker and I think that alone may cause her to sleep a lot.
JimB, I seldom post anymore but I've been following your posts and I hurt along with you. You are such a caring person. I don't know how I'm going to get through that stage without some kind of breakdown. God must be giving you extra physical and emotional strength during this time. You're a wonderful example for the rest of us.
Jim, This has to be so hard for you and your family. It all sounds so familiar too in what we saw with my mom. It is good that Kathryn is not feeling pain now and that you and the hospice team can do the things for her that will be necessary. Try to get some rest too. You are an amazing man and Kathryn is blessed to have you by her side...and you are blessed that you found her too...No matter what, she will always be near to watch over you it will be a heart to heart relationship that will be forever. Blessings..
I am worried about Kathryn getting bed sores. I try to turn her but I think she is scared she is falling or something and fights being turned. I tell her what I am doing so she won't be as scared but it doesn't help. It is an uncontrollable fear I guess and she can't help it. Does anyone have any ideas how one person can turn someone in bed when the person struggles to not be turned? As weak as she is she can still put up one heck of a fight when it comes to turning her. I don't want to hurt her but I don't want her to get bed sores either.
Is she in a hospital bed furnished by Hospice through medicare? If so, raise the foot of the bed...they have a more difficult time in trying to move on their own or fight the moving you are trying to do when their head is lower then their feet. Also.. I took an old sheet I had and cut it in half. I used it as a draw sheet which covered the bed from approx. shoulders to knees and it is long enough to tuck under the the mattress. When I had to turn Jim, I would loosen one side of the sheet and roll it up in my hands and I could quickly turn him on his side. Then I would have several pillows available to push against his back and this would keep him in that position and he usually would go to sleep like that. Then I would use the draw sheet on the other side of the bed and roll him the half turn adding pillows at his back again. I am a small person and it really isn't that difficult. Also, they have the air moving mattress which help to prevent bed sores. Jim had one of those too. Hope this helps.
jim ask hospice for an air mattress that rotates so it helps avoid pressure sores. then you wont have to be moving her. its for comfort measures, be sure to tell them that she cries when you move her. divvi
Divvi is right, Jim......the alternating air pressure mattress is what you need. My husband had one for the five years he was bedbound and we had very little problem with pressure spots....
Yes Jim, please do talk to Hospice. I am a bit surprised they haven't offered you one. When I was caring for my bedbound aunt and uncle last year they brought them right to the house and set them up. At the nursing home Lynn has what they call a turn select, it is AMAZING! He hasn't had one pressure sore since (it's been 3 years)
The air mattress is a huge help in keeping bed sores away. All the other suggestions are good. See if Hospice can arrange for the air mattress if you don't have one.
Kathryn has only been awake seven hours out of the last 47 hours. She seems comfortable and pain free. The times she was awake she was more alert than normal and was able to talk some. Most of it didn’t mean anything but some of it was interaction. I am not sure if it is the Alzheimer’s or her medicines that are making her sleep so much. Wish I knew. She ate a little more on Tuesday and today so that was good. Turns out she will eat sliced peaches pretty good so I am giving her of them she wants. There was about an hour last night she seemed so bad I thought I was going to lose her right then. She wouldn’t respond to her name or being touched on the face. I called Hospice and that sent a nurse but by the time the nurse got here I was able to wake. Her vitals improved by the time they arrived and have stayed better all day today.
The nurse that came told me she may be getting ready to enter the dying process. I looked it up and she has had all most all the symptoms of it for a long time so I really don’t know if she is or not.
Jim, this reminds me so much of what our nurse told us about my mom...they actually evaluated me to make sure I did understand what was happening. They do, I think, try to prepare us for the final stage. We went through the highs and lows just as you wrote above. I think this could go on for several days, it did for my mom. It was so hard to understand and absorb..I felt like a yoyo... In the end after trying to read the tea leaves in the literature the Hospice nurses left, I just watched my mom's breathing. What I saw was that as she was getting closer to her last breath, I would only see a little breathing rising and lowering as seen in breathing up close to her throat region. It became lighter and lighter and lighter and finally there were no more inhale breaths. She went very peacefully... just stay with her as much as you can, hold her hand, use her favorite hand cream, and read some passages of the bible or whatever books she most enjoyed...my mom could actually hear and would now and then respond, listen to sweet music and whisper "sweet nothings" in her ear and tell her ( and this will not be easy) you will be fine, you will always carry her in your heart and that it is ok for her to do whatever she needs to do on her own terms. She may need your permission to slip off to her new life. We are all holding you in our hearts...you and your beloved Kathryn.
Jim: I can't tell you how many times you and Kathryn are in my thoughts and prayers each day. As someone said...and I don't remember who it was..."dying isn't easy". I too had my husband in the same type of condition for day and maybe weeks before he passed. I also hated to wake up in the morning thinking he might have died and I wasn't near him or holding his hand. Finally, the Hospice Dr. came with two of the nurses and explained to me what to watch for and one of the signs he talked to me about was the change in his skin color. When I first started noticing the change in his skin on his arms the hospice nurse looked and said, "I don't see anything different". Well...I did notice. So just be alert to what you know and feel...you are the one that really knows your darling wife. Take care and know we are with you and feel your pain.
Oh Jim, how this all touches me so. I hope you don't mind if I share a story of when my sister passed, I know your darling Kathryn is not there yet, but I hope this will bring you comfort.
As Dianna was in the semi coma of her last days of Colon Cancer, people would say, you don't have to stay here, she does not know you are there. (I spent the last 3 nights in the hospital with her) She had been in a coma for 2 days, and, thank God , all her three sisters were there when it happened. We were in her room, sneaking champagne and putting a few drops on her beautiful mouth. Suddenly, my sister Linda said LOOK!! We gathered around her bed, and slowly Dianna opened her eyes. She looked at Linda and said softly I love you, then, she looked on the other side at me and Melanie. She said to Melanie, roo roo Rooster in a stilted voice, as that was her nickname. THEN< she reached up! her little hand, stroked my face, and said Patty Patty, and closed her eyes never to wake again, it was simply a miracle.
I tell you this, because all the time I was there , I talked to her, I sang to her, read scripture, and just loved her up. SHE MUST HAVE KNOWN! SHE WOKE UP FOR US!!
Your precious Kathryn knows how much you love her, of course she does. Every little word or stroke you give her , she knows. What a wonderful gift you have both been for each other.I hope that if it comes soon, that when she takes a final breath, it is such a beautiful peaceful thing like my sister did.
Jim, I firmly believe that Kathryn is aware you are with her. Try doing what Coco and others have suggested, and read or talk to her even if she seems to be sleeping. Be comforted that she isn't in pain, and treasure these days you still can share with her. My thoughts and prayers are with you and your dear Kathryn.
Kathryn has been asleep all but 11 hours and 15 minutes out of the last 75 hours. However when she woke up today she was hungry. She ate half a can of peaches, three meet balls, two cookies and almost ¾ of a grilled cheese sandwich. That is more than she ate in the last week I think.
The nurse and a social worker from Hospice came over today to see how I was doing. I told them I was doing ok but not getting a lot of sleep at night. Other than that I feel good physically.
The thing that gets me is going into Kathryn’s room during the night and in the morning until I see her breath. Her breathing is so shallow when she sleeps it is very hard to see any movement in her sleep. This morning I stool staring at her for 15 minutes I think before I saw that movement. I don’t know what will happen when that breath doesn’t come. I really dread that.
I called Hospice two nights ago to ask a question and I guess that could hear in my voice or something that I was upset because they said they were going to send out a nurse to check on Kathryn but when the nurse got here all she did was sit and talk with me for a while.
This is getting really hard watching this happen to her. I remember when we first found out what was wrong with her she told me she never wanted to be like this and wanted me to just let her go. What does that mean. How do you just let someone go. The only thing I can do is do nothing to hold on to her.
When I read your this my heart breaks for you. I do want you to know that I am praying for you and your sweet Kathryn. May the Lord's angels surround you and give you peace and comfort.
Jim: As I have said every time I respond to your posts how much I know how you are feeling. You will never know what control I have had to muster to not explain what the hospice dr. said to me. I did not want to infringe on your treatment and care of your darling wife. Now your post has given me the opening to explain to you what the hospice dr. told me. After the discussion I had with him and the two nurses that came to see Jim and tell me it was "the end of the end" we first had a discussion about how I felt about letting go and if Jim had ever discussed the end of life care about himself with me. I said yes...we had full knowledge about what type of care we both would want and neither one of us wanted to live if we were like he was at that time. The dr. said this to me after that conversation.
He said if you continue on like you are doing he might last a month. However you can with hold food and water or both. If you with hold water he probably will be gone within a week and if you with hold food and continue to give him water he might last two weeks. The the doctor said...the choice is yours and you know what your dh would want and we will send someone to be with you whenever you want night or day. I made the choice to with hold both water and food and he was gone in 5 days. I never have felt a second of guilt and I know I was doing what he would have wanted me to do. After I made that decision then I had the greatest since of relief because I knew the time line and the dr. was right. I played his favorite music...gave him back rubs, held his hand and I knew this was going to be it. I never saw any signs of pain or discomfort from him. I am not suggesting that this is something you or anyone else would want to do. But, I did it and I have never been sorry for giving him the opportunity to go to a better place. I know I could never have done that without the dr. suggesting I had that avenue to travel and the choice was mine alone. God bless you Jim and I do understand what you are going through.
Jim -my heart goes out to you. My experience with my dh was much the same as Judith. It is the absolute hardest experience I have ever had but we too had talked about what we wanted done when our time came. I knew he would not want to linger in the condition he was in, so the hospice nurses kept him comfortable and he was gone in a week. Our family each came and talked to him and they were all in the room as we told him goodbye. I'll say prayers for you it will never be easy. Grief is hard.
Jim...I read every word you write, and know exactly how you feel. I went through the same about 2 years ago, and it is the most difficult thing to experience. I am only about 4 hrs away from you, so if you need to talk, or just to have someone with you, just email me...I cannot to much to change the situation, but I do care about you and Kathryn and can only offer my sympathetic support. Your thread reminds me so much of mine, and I am here to help you thru the most difficult moments in your entire life....
Jim, I would take Phranque up on his wonderfully kind offer to be with you. There is nothing quite as supportive as having someone with you who truly understands what you are facing. My mom slipped away in a similar way as described by Judith. We could no longer get her to eat or drink anything at all so all we could do was keep her lips moist and use one of the little tooth sponges to keep her from feeling too thirsty. At times her tummy would growl as if she were hungry but there was no way she could eat or really drink. Her breathing was as you described in your last post so I really relived that with you. The most important thing for Kathryn is that she is comfortable and as pain free as possible. I will tell you something my dad, a retired MD did when I thought for sure my mom was gone, he had me get a wash cloth with cold water almost totally rung out. He squeezed the last few cool drops over her forehead and when she winced he knew she was still with and it gave us some relief to know we could still talk to her and hold her hand be just be present in the moment with her. The next morning she was gone.
Our thoughts and prayers are with you....and please consider Phranque's offer...
Jim, I think you should take whatever help is offered. We are all praying for Kathryn and you. Keep doing whatever you feel is right. I know this is a very difficult time for you to endure - hang in there.
Thank you Phranque. That is a very generous offer and I do appreciate it more than you can know, but I am not sure how long this will take. It could be a day, a week, a month or more according to Hospice. To tell you the truth as much as I do appreciate it I could not do that. I don’t think Kathryn would want others to see her like she is now. She cared very much for others and would not want this to be their memory of her. She always said she wanted everyone to remember her as being a happy person who enjoyed life and I told her I would do everything in my power to make sure that is how everybody remembers her.
I know most will say she loved me and would not want to hold me to that, and I do understand that. But I love her enough to hold myself to it and it is something I have to do in order to be good with myself when it is over.
Kathryn and I have many great friends who have been and continue to be big part of our lives and have gone out of their way to make sure we both knew they are our friends during all of this. They still call on the phone and I hold it up to Kathryn's ear and they talk to her also. That only works for a few seconds at a time but does occasionally get a smile out of her.They have all offered to be here also but we were also very private and this is the last private thing I can do with her.
JudithKB, Thank you for sharing that with me. Once Kathryn stops wanting to eat I will make no more attempts to get her to eat. From everything I have read and been told I understand there is no pain of hunger at that time and I know at that point it will be only a short time before she is taken from me. But hearing it from someone that has had to deal with it does give me some comfort and may in the long run help me deal with it.
Jim, You are a wonderful husband to a wonderful lady and I do understand your desire to keep a promise to her. I also understand the desire and even need to share all alone, that very private moment when the angels greet Kathryn and escort her to her well earned crown, whenever that may be..
It is so wonderful that her friends still can communicate with her a little and eek out a little smile from time to time. How precious this is for all.
WE are all sitting vigil with you, some of us having gone through it with a spouse, others of us with a parent and uncle...we are with you now and will be here later too.
Give your lovely Kathryn a gentle kiss from all of us here and whisper to her that we are with both of you.
Kathryn was awake off and on from 10:00am this morning to 4:00pm. She ate a small bit of a sandwich and one cookie but only drank a few swallows of juice. She is now back asleep. She had some pain while she was awake and I had to give some morphine to help with that. She is now resting peacefully. When she is asleep it is so strange being here in the house. It is as if I am alone. I keep checking on her but she doesn't move at all when she is asleep.
But I believe she still hears you,tell her you love her an talk to her,when my LO was in her last hours a year ago she had been unresponsive for a week,never opened her eyes,I left for a few minutes an my daugthers called me an told me to hurry back to hospice she was waiting for me,as I ran into the room she had her eyes open an reached out to hold my hand then too two breathes an was gone,oh how I wish I had told her how much she meant to me.
I was never with anyone who died until my father in December. I believe with all of my heart that they wait for you and they know you are there. The NH called me to tell me that he had taken a turn for the worse, and I should get there as soon as possible. I ran into his room. He eyes were closed; he could not talk. I took his hand and said, "It's all right, Daddy. I'm here.It's Joan. I love you." I held onto his hand for the twenty minutes it took until his last breath. Don, she knew. Jim, she will know you are there.
Nothing I have ever experienced in my entire life has given me peace like what I felt when I could be there holding my father's hand at the end. I hope with every fiber of my being that I can do the same for Sid when it is his time.
This makes my eyes tear up every time I read through the comments.....
I have no words of wisdom Jim. To be truthful just imagining myself in your position is enough to send me into a mild panic attack, a lump to form in my throat and tears to spring to my eyes.
And that is with me having the experience of being with 3 family members as they passed, and knowing the peace we can bring our loved ones as they leave this world. Still, it cuts deep and I know I will not be as brave as most of you.
Lynn and I were private too Jim so I can appreciate your need to want to keep this private for her. But, Frank offered an ear on the phone, or an email too...... if you want to reach out to someone, I can think of no one better ♥ It might help to have someone to talk things through with. Often it is hard to type out our feelings, on the phone we can just spill our guts and it does bring relief just getting it out.
I pray your dear Kathryn has no more pain and that your pain is subdued knowing you are doing everything possible to bring comfort to your dear wife. I am so very sorry Jim ((hugs))
I concur with many of the other posts Jim that if you want to reach out Frank as offered his comfort.
I lost my first husband to a closed head injury /auto accident (he was in a coma for 7 months) and I do believe that they hear our comforting voices. She knows you are there for her, and she loves you. You are and have been a wonderful husband and care-taker to your lovely bride.
I am so very sorry that you have to endure this Jim. Praying for you and Kathryn
Thinking of you both Jim..I wish there were more words that would comfort you, just know you are in our thoughts and prayers.
I was with my Mum when she passed, it was so peaceful, took any fear I had away,. I believe the hearing is the last to go, so talk to Kathryn, she will know your there...♥
Kathryn was awake about 13 hours today of and on. She still a few slices of canned peaches and drank almost a whole glass of water. The longest she has been awake in one day for almost a month. Has she was getting ready to drift off to sleep I kissed her on her forehead and told her I love her as I do every night and she was a sleep. I went back in and took her vitals about an hour later and they were as follows:
Blood Pressure: 78/53 Oxygen: 74% Pulse: 45
It isn’t unusual for any two of these to be low but it is rare for all three to be low. She was very groggy when she went to sleep but that also is not unusual any more either. It is so hard to know what is happening because so many of these vitals have been unstable for so long at any given time.
Kathryn woke up early today and stated up most of the day. She seemed a little out of it which is normal. It is the first day she hasn't drank anything at all and she only eat two cookies because I got to because they had her meds in them and that took a while. Swent back to sleep around 7:30pm.
Jim, would giving her medication in something smooth and easy to swallow, like ice cream, work better for you both? You and Kathryn remain in my thoughts and prayers ((hugs))