Oh Jim I am so sorry, the pain, the fear.... I have no grand words of wisdom, just love and support. I will add you both to our prayer list tomorrow... ((hugs))
Aw Jim, I'm so sorry for YOU. Kathryn is trying so hard to free the bonds of Alzheimer from her body, and fighting to stay with you. I have an idea that deep down inside, you don't want her to have to fight for every breath she takes, and continue to be in this state. My husband was in a coma for five days before he died. At first, I pleaded with him to wake up, to open his eyes, but then I realized that he would have HATED being the way he had been for years and years, and he really wanted to be set free. Jim, as he took his very last breath, - the very last one, - suddenly he smiled a little tiny smile - and I just knew it was because he was free and saw something beautiful. I missed him so much, - and in a selfish way, I wanted him to keep breathing, to be alive, - so if nothing else, I could feel his presence in the room. I just didn't want to go on without him.... but my memories of him were before AD, not the way he was the last few months.
I have a feeling Hospice will up her morphine so she will be more relaxed and allow the little cannulas to stay in her nose. The oxygen will help her feel better, raise her ox levels and help her relax. They know what is best for her.
I know how hard this is, I've walked your walk.... and all the words in the world will not ease your heart ache. I just want you to know that you will get through this... not right away, but you will. We're all praying for you both. Nancy B*
OHHH YES....we are all here for your support. We with are stars know what you are feeling. For me, like NancyB. also said, I knew Jim would never want to be like I saw him the last week of his life. Wish we could just be with you and hug you...the hurt you are feeling is so real for me as I type this. Take care of yourself. Hospice can really be of help to you...call them and they will send someone out regardless of the time...they even have others that will come and be with you just so you have another person in your home. Take care.
JIm, tears filled my eyes as I read your news. I know how difficult it is for you to see Kathryn this way. I will pray for you to stay strong. Just keep telling her how much you love her!
I am so sorry to read this latest turn of events...especially when she seemed to rally earlier this week. Lean on Hospice as much as you can. I understand the fear you have and worry too...It sounds as if Kathryn is doing some transitioning somehow. Just stay with her, read to her, play her favorite music, and talk to her...she may not be able to stand or talk much but she will hear you and know that you are there with her. That will give her comfort.We are all here to hold you up... Blessings on both of you.
My prayers going out to you and Kathryn, prayers for courage and comfort. Even though I read all that has transpired with so many, I just cannot imagine how hard it must be.
jim, so sorry to hear of the continuing decline with your dear sweet Kathryn. i agree with the others that allowing hospice team to help maintain her comfort levels is crucial now. upping the meds so she becomes quiet and calm may also ease your pain and stress so that any transitions that come will be peaceful. hugs. divvi
We are here with you, Jim, but you need to be strong for her. nancyB said it best. Let them help her relax and accept the oxygen to make her able to breathe better. Let her know that YOU WILL SURVIVE when she leaves you. The greatest gift you can give her now is to let her know she can leave you. You may not feel that you CAN survive, but you will, and I know you don't want her to suffer because she feels she can't leave you.
This morning Kathryn was able to respond a little. She opened her eyes and clearly looked at me. I asked her if she felt ok and she nodded that she did. I asked if she was still tired and she nodded again so I asked her if she want to sleep more and she said yes and went back to sleep. I took her vitals and her blood pressure had dropped to 78/44 Her pulse drop a little to 48 but her oxygen actually climb to 93%.
I have no clue what that may or may not indicate. I wish I did.
Jim, prayers for both you and Kathryn today. We know how your heart aches for her (and you) and ours aches for both of you during this difficult time. May you both have peace.
Jim, ditto what bluedaze said. Do not waste your precious time together trying to figure this cruel disease out.. Get in bed with her and hold her and love her. Your love and devotion is so awesome. Continuing to pray for you both for a peaceful passing. God bless both of you.
Jim - I'll just add that we had hospice. They know how and what to do for your Kathryn. As others have said I knew Frank would never have wanted to stay any longer in his dementia prison. It is so hard to let go-- but let go we must. My prayers for you in this part of your journey.
Jim, I have been following your posts. I am so sorry you are going through this difficult time. My husband is where Kathryn is now. I called for Hospice a few days ago. I didn't think I could live through some of his stages, but this is by far the worst. It is heart wrenching. Let hospice help you. You're in my prayers.
Today is the first time Kathryn hasn’t been able to walk at all and when you try to move her she cries out either in pain or scared she is falling. I don’t know which. I asked Hospice if it was possible that making some changes in her medicines might help and they said there was nothing left to change to that we have done everything there is to do. Her vitals are low but holding and she will still eat very small amounts of fruit (Apple, Strawberry and banana). She is crying a lot of the time and nothing seems to help with that either. She still feels music so I play it for her.
I have read and reread her advanced directives and will follow them exactly. We talked about this when we first found out she had Alzheimer’s. It was a lot easier to agree to back then but it is much harder to following them but I will without fail. I just wish there was more I could do to make her at ease. She seems so scared of everything.
I'm praying for you and Kathryn, Jim. (((HUGS))) I can't even imagine how difficult this is for you. Try to remember that one day "...God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away..."
I think Kathryn may well have some fears just in how she feels which must be so strange. Also there may be some pain when moved. I remember when we had to move my mom, she sort of stiffened like the little kids who are resisting being put to bed or being picked up..if it is pain Hospice should be able to help with that. In the mean time, just be with her, play her favorite soothing music, read something sweet to her, continue to whisper sweet things in her ear, hold her hand and all the other special things she likes that only you know. She knows you are with her and that will help so much. I can imagine and imagine only how hard this is as I walked this path with my mom and an uncle...and that is not the same as a spouse as we all know....this is so much harder.... We are all here for you and saying our little prayers for your strength and peace and for comfort for dear Kathryn.
jim if she is showing pain then hospice should be on top of that and able to give her meds to ease the difficulty and lessen her pain. she should not be suffering and they are working exactly for this to help her thru without pain. to say they have done all they can when she is clearly in distress is not acceptable. they can up the dose of current pain meds or try something else. be insistent for her sake. divvi
I had to get Kathryn up at 8:30am this morning so the lady from Hospice could give her a bed bath. After the bed bath I asked her if she want to get up and eat and she did. She ate her whole breakfast. First time in about a week I think she ate it all. She then walked to her chair with my help and I thought wow, she is having a good day. She did ok for about 3 hours and then the pain came in. It appeared to be the most pain she has had to date. She was crying a lot so Hospice gave her a new patch for it. I gave her some morphine because the patch takes about 3 hours to work the first time it is used. She continued to be upset and I asked her if she was tired she nodded yes so I got her into bed. She has been a sleep all day and was only up for 3 ½ hours total. I installed a TV in her room and put on movies with animals. She woke up for a few minutes and was smiling at that until she drifted off again about 30 minutes later.
She is extremely weak now and unable to balance by herself anymore. She spends almost all day either in her chair or bed. It is rare when she seemed to understand anything at all but there are small moments where she nods to something but I am not sure she understands the question because I asked her if she had pain and she nodded yes and I then asked her if she felt good and she nodded yes again.
It seemed that things change daily and you never know what it will be until she wakes up in the morning and it is time to deal with it. It truly is living one day at a time.
Dear Jim, So sad to hear Kathryn isn't improving. Yes, sometimes it's not even living one day at a time, but taking it hour by hour. You are in my prayers with your dear wife, Kathryn. Lullie
I just took Kathryn's vitals and they were Blood pressure - 73/42, Heart rate - 62 and Oxygen 98%. I don't understand how one or two can be bad and the other be great. It doesn't make since to me.
Anchor....boy does this sound like my dh. I never could figure out why those numbers went up and down. The Hospice nurse said that she thought he was having TIA's, but of course there was no way to tell for sure because he was almost in a coma the last couple of days. Very unresponsive and then bang...he would be moving all around and trying to talk. Then back to nothing.
If I remember right he did get more of the morphine each day because he would get really restless and we didn't want him to get totally like he had been the previous week when he was uncontrollable in the bed. Of course when I was here by myself there was no way I could get him out of the bed. He loved me having the music on for him....I think it is very good for them and helps them relax.
Take care of yourself and know both of you are in our prayers.
Jim: I send my sincere thoughts and prayers to you along with the others. I really know how you feel and what you are talking about. I had the almost same experience three weeks ago today.
It sounds to me like you are doing everything right.
Hospice recommends that I use their respite program and get some rest. I have not wanted to use it to date because every time Kathryn has had to go to the hospital she has suffered a big decline and I have been afraid she would have a decline if she went there. They pointed out that they didn’t think that would be the case now. After thinking about it a while and because I am having a problem providing the level of care I think she needs and that they said It would be ok for me to go in and watch how they do things like bed baths, feedings and other things I believe may help me provide better care for her at home when she returns. I think I am going to have them go ahead and admit her under the respite program. The nurse said they would not only be happy to let me know their schedule so I can be there when they are doing things I might learn from, but would also be happy to answer any questions I might have and to teach me how they do anything I ask for help with.
This will be a big help I hope which will make me feel better about the care I am providing Kathryn at home and Hospice will not worry so about my well being so much. They have been trying to get me to take it for a long time. I am not sure I if I can do it but I think it is in Kathryn's best interest that I try.
I’m not sure how I will feel once she is admitted. I have been with her every day from the start. It will be uncomfortable. I will be there every morning and they will call me if anything happen or if Kathryn needs me.
I keep wanting to write something but all I can think of is to tell you that I'm inspired by your love for your Kathryn and for your willingness to share these moments. I fear this part the most and know I cannot prepare well enough for it. But seeing your deep and abiding love helps me be kinder and more patient and remember to be grateful while I still have so much of my Jim left. I hope you rest well knowing that Hospice will treat her gently while you regain some strength. Sleep well.
I hope your respite time will give you a chance to breathe and maybe help Kathryn too. Having the medical staff to attend to her needs as soon as she needs something and giving you relief from second guessing what is best to do for her might help her be less worried and ease her crying. I feel so sorry for both of you. I have seen her pretty picture on your title and what a wonder she is... Funny thing, our pets pick up on our moods when we are under stress and somehow I think our LOs do too so if we are more relaxed and calmer it has to help them too. Blessings be upon both of you at this special time of year.
Jim, yesterday new wife Joyce and I celebrated our third wedding anniversary by inviting the minister who had married us to join us for lunch. Like me, he had remarried late in life after losing his life partner of fifty or so years to a long and drawn out battle with cancer, and during our lunch conversation he made a comment that really hit home with me. He said that now, when he performs a marriage ceremony for 23 year-olds and gets to the part of the ceremony about "until death do us part", he often pauses to remind them that while they're young and healthy now and think life and marriage will always continue like this, it is possible -- maybe even likely -- that serious illness will intervene later in life, and notes that the greatest love and devotion he ever demonstrated to his wife, and the closest he ever felt to her, was in nursing her through her final illness. You're showing that great love and devotion now, Jim.