Kathryn went to bed at 3:58pm yesterday evening and has stayed in bed. She doesn’t want to get up at all. She wants to stay in bed now. This is the day I have dreaded because being able to get up and walk has been what has kept her going. The folks at Hospice called her their “energizer bunny”. She would get up in the morning and start walking and not stop until she went to bed normally about 16 – 18 hours later. This may very well be why her decline has become so fast I guess.
The one good thing is she does seem comfortable most of the time. She does have moments where she cries and her skin becomes clammy. She ate two pieces of toast today and about ¾ of an apple. She drank about a glass and ½ of tea. That’s more than she has drank or eaten in one day in a couple of weeks I think. It is hard to remember exactly. The days are starting to run together.
The Hospice nurse that has been her nurse though it all since Hospice has been involved says, she has now reached the point where the best we can hope for her is that everything will speed up to where she will not suffer at all. I have to agree with that. I do not want her to suffer any. The medicines seem to be working to control pain now. She also said rather than do respite they are going to admit her to a Hospice care unit. I’m not sure what the difference is but I do trust their judgment.
Thanks for letting us know. We are all thinking of you and praying for peace for you both. Don't forget to take care that you are getting enough food and rest.
I have been following your posts . Your selfless devotion and love for Kathryn is so touching. You must know that you have done everything possible to provide the best care for your wife. Is there anyone who can support you at this time? This is such a lonely road. But, you know there are so many of us here who care.
This is the hardest and most difficult phase...With the help of Hospice, now more than ever you can be with your darling Kathryn in the most meaningful way...I have been following all your updates and it is taking me right down memory lane with what happened with my mother. Your devotion to your wife in caring so lovingly for her shines through in all your posts.
You and the other gentlemen on these boards, have all demonstrated the most loving care. You are all heroes.
I've been following you on your journey and I keep wondering if there is anything I can say to you. You are truly an amazing human being, and I just want you to know that I admire you so much.
Along with the love and kindness you have shown for your beautifull Kaythryn, You seem to have great tolerance and understanding for your situation. With such an attitude I think you have a wonderfull life ahead of you.
My dear Helen's been gone seven mounths now and it seems like all the memories of the bad times are only dreams that never really happened. I wish the same for you Jim.............George
Jim, Sorry to hear Kathryn is declining more, but glad that she doesn't appear to be in pain. I know this has to be ripping your heart out. Take whatever help is offered you during this very difficult time. I will continue to pray for you both.
I was able to get Kathryn out of bed yesterday morning. She wasn’t able to help so I just picked her up and moved her to an lazy boy out in the living room and opened the doors so she could see out side. She used to enjoy walking on the front porch so I thought it might brighten her day a little. I don’t believe she looked out the door one time, so it really didn’t accomplish much and it scared her a lot to move her so I don’t think I will do that again.
Every time anyone touches her she becomes very upset and panics. I am not sure what to do for her and what not to do for her. I want her to enjoy what time she has left but I think that her fear or panic is preventing her from being able to enjoy anything that requires moving her at all. It is very hard on her just to roll her in bed to keep her clean or change her linins.
It is possible this may be because she may be bleeding inside a little but there is no way of knowing if she is or not. I guess the best thing may be to assume that she is and simply not move her any more than necessary. It just seems like this disease is making her more and more of a prisoner every day. She just lays in bed and stares at the ceiling most of the time.
I am so very sorry. Could you just leave her in bed and turn on the lights or open the windows to brighten the room if she would respond well to that. Or play soft music? Have the tv on in the back ground? I think you are right not to move her.
Jim, I think that to take your cue from Kathryn is a good idea. She needs to have her position changed in bed frequently, but that's all at this stage. We want to help, but eventually all we can do is just stand by.
I understand the need to "do" something. Maybe the time has come to just "be there" for her. She knew and knows that you would do anything in your power to do for her. There comes a time when you just have to BE. Let Hospice DO....just BE with her, continue to pour your love over her, hold her, caress her. Praying for a peaceful and loving end to this dreadful disease for your dear wife. I wish I had your care giving spirit!
What you described is what I witnessed with my mom toward the end. Moving her was uncomfortable and we too gave her the ride in her wheel chair but she could hardly hold her head up and she really was detached from the things we thought would give her some pleasure. Kathryn is doing some other "work" that we cannot begin to imagine. It has to do with her transition from this life to the new life where she will once again be well and whole. It is at this time there really is not much we can "do " for our LO other than be present with them, read to them, play soothing music, and hold their hand, sometimes smoothing a little lotion on her hands and arms might sooth her. Just spend all the time you can just loving her...let her know she is not alone....and let her know you will be alright.I finally told my mom, hard as it was and through tears, to " just do whatever she wanted to do, whatever makes you comfortable and in your own time". When she made her decision, her last breath was as gentle as a butterfly lifting off in flight from a lovely flower. Finally she was at peace. I think that was the greatest lesson she ever taught us all...grace... Arms are around you and we are all here to help hold you up during these difficult days.
Kathryn was having the most severe pain she has had to date tonight. I had to call Hospice and they had me increase her morphine to double her dose. She is now on a very strong pain killer with a 72 hour patch and morphine both to try to help control her pain. She is not able to tell anybody how bad her pain is so we have to gage how severe it is by her actions and reactions and then try to bring her back to a level where she seems more at ease and comfortable. I know you keep her in your prayers and will continue to do so. She needs them more than ever now.
Jim, we are all still with you and kathryn. If you can control her pain and keep her comfortable, then you are doing a great kindness for her. You have been a wonderful carer over the years and you continue to be so. All the very best.
Jim, My thoughts and prayers are with you. May God grant you and Kathryn the peace though this final journey. You have been a wonderful caring husband and have truly been an example of a tower of strenght. Your kindness, love, and caring are to be greatly admired. Please take care and my prayers are with you during these diffcult hours. Lullie
Jim, I was so sorry to read of Kathryn's severe pain. I think you are doing the best you can to comfort her. Hopefully Hospice will monitor her pain level closely and give her the needed meds to make her as peaceful as possible. I will continue to keep Kathryn and you in my daily prayers.
Jim: My DW fell and broke her hip two weeks before she passed away and the pain was excruciating. Just unbearable. Morphine was the only medicine that would give her some relief. The hospital was very 'generous'. Thank God for this drug.
Kathryn was admitted to the Hospice care unit today at 1:00pm. They are going to work on her meds. She has been in very bad pain. The rip over and being moved twice in the process was very stressful for her. She has been asleep since getting there. I just got home to get some sleep myself. It is really strange being in the house without her even knowing where she is. I can't begin to imagine what it will be like when she really gone. It seems so empty without her here.
I can only imagine what it was like for you to return home without Kathryn...I hope you can get some meaningful rest and sleep knowing you are doing the best you can for her now and that she has the best care at a moment's notice. Once you are a bit more rested, you will be able to be there in the most meaningful way for Kathryn without the worry of all the minute details of caregiving...We all hold both of you in prayer...
You are going through such a difficult time right now, Jim. No one can make it easier. Kathryn is so fortunate that she has you to arrange for her best comfort, and the least pain that you can get for her. Hospice is truly going to be a blessing for you both. You need to remind yourself that you are there for her in every way, and can do no more than you are. It is now your pain that needs attending. Please know that you are a blessing to her, and are answering your call. Take comfort, dear man, that you are "together" through it all. My prayers are with you.
Jim, thank you for posting to let us know how Kathryn is doing. I know this has to be so very difficult for you, but I think you made the best decision for Kathryn at this time. Hopefully, she will get some well-needed relief from her pain. And, even though it is difficult for you to relax right now, try to get some rest. I will pray for strength for you to deal with what is yet to come.
I went home to try see if I could sleep better there last night, but it felt so wrong to be there without Kathryn I couldn't hardly sleep at all and went back to the Hospice facility to be with Kathryn. Kathryn and I have never been apart for more than a week once we were married. And then only if my work asked me to go somewhere. I can't begin to imagine how it will feel to go home by myself when she is really gone.
Another thing that happened yesterday was the doctor asked me to step outside with him and talked to me about Kathryn and what she was going thru and the fact that everything was happening much faster now. He asked me how I was doing and complimented me on doing a great job in caring for her. I told him thank you and then he told me I should prepare myself. I have to tell you, even knowing this day would come, it was still like being kicked in the guts to hear a doctor say that. I am going today to make arrangements. A friend is going with me to make sure everything gets done as Kathryn and I agreed.
Jim, you are a wonderful, loving husband and caregiver for your beloved wife and friend. My heart aches for you both during this very difficult time. We are never prepared to hear what you were told. As bluedaze* says we know, love and understand. Prayers for you both.
Jim, it sounds like you are being served well by the dr. This is so difficult for you, but knowing you have done everything possible as a caregiver for your dh should be a comfort to you. You will be in our thoughts and know we are here for you.
Hospice has Kathryn stable now and asked me where I would to have and I told them I want her at home. I have let them put in a Foley catheter which they assured me would make her a lot more comfortable because of all the trouble and fear she has when anyone tries to move her to keep her clean. They also said it will mean that I will only have to do that kind of cleaning once or maybe twice a month because she goes to the bathroom so little. I asked them if it was used to primarily extend life and they assured me it was not so I am allowing them to insert it.
I will have her back home tomorrow afternoon.
I went to the funeral home and made arrangements this morning her both myself and Kathryn. This way I will not have to make those kind of decisions after Kathryn passes and now my son will not have to make them when I pass either. I made it thru it without really crying. I did shed a few tears and they had to wait for me to regain my composure a couple of times. But I did it.
I also visited three nursing home just to have the information should I need one for Kathryn at a later date and guess what? They won’t take her because she is too young. Can you believe that? Too young. So I think I will just make arrangements for more in home care if I need it for her.
Jim, I admire your dedication to Kathryn so very much. It is horrible that she has to endure this terrible disease, but she is fortunate to have someone so loving and caring as you. I will continue to pray for your strength to help Kathryn have the best days that she can have.
Jim, I hope I am as composed and well thought out as you are when the time comes to face these issues. I am shocked that some of those facilities refused you saying your wife is too young....I don't understand that but somehow, may be her being at home with you and all the things she is familiar with somehow will give her more peace as you face this mysterious transition. Bless you both.
Oh Jim, you are so courageous and yes, I've heard DH is still too young - for help from the state, to be admitted to facilities (only 65+), etc, etc. Yet when he's hospitalized the drs say he needs a geriatriacin or a geriatic psychiatristic and when I remind them he's only 60 (now 63) they say it's not his age but the condition (dementia) he has that can only be treated by a professional specializing in geriatrics. Yet there are still many facilities that will not accept him because "he's too young". Makes me wonder if it's about medicare/medicaid payments. who knows. But what I absolutely do know is that no one can care for your beloved wife better than you and that can be at home or under your supervision as her primary and best caregiver. Love to you both.
Jim, I keep going back to look at your profile photo...I love that photo of you and Kathryn. I admire your courage and dedication in caring for your beautiful Kathryn. Continued prayers for you both.
Everything was arranged for Kathryn to come home today but the doctor said that they still have one issue that needs to be taken care of. She hasn’t had a bowl movement in a week. The nurse told me they may to keep her there until she has one. I wasn’t aware that she hadn’t but they explained the importance of it to me and I believe they are absolutely doing the right thing.
I am glad she doesn’t remember she was going home. I am sure if she did it would be very upsetting to her to now not be able to go. Hopefully she will have one soon and be able to come home soon.
I have learned something else while she is there also. She reacts to everybody the same. I think she doesn’t know anybody at all now, me included. She used to know the nice guy that took care of her but now I can see they are all nice guys that take care of her. I think that is a good thing. It means she is ok being there. At this point I believe that is in her best interest and I can live with it.
Jim this so hits home with me. I noticed that too, that Dado since he has been in his new residence, seems to react the same to everyone. He does know me, and gets a little anxious when I leave..but..I can see he is fading.I miss him so so much.
SO GLAD they are taking good care of your sweetheart, and I hope you are getting at least a little sleep and eating.
Kathryn is home and stable and on a lot of new meds plus some of the old ones as well. This is a list of what she is taking now: 1. Fentanyl 12 MCG/HR: apply one patch to clean dry skin every 72 hours for pain. 2. Haldol 1mg Tab: one every four hours as needed for restlessness. 3. Seroquel 100mg Tab: Take one Tab once daily. 4. Restoril 15mg capsule: take one at bed time as needed for insomnia. 5. Ativan 1mg Tablet: one every four hours as needed for anxiety. 6. Senna-s Tablet: take two tablets twice daily. 7. Morphine 10mg: take 0.5ml every four hours as needed for pain or shortness of breath. 8. ABH 1/12.55/2/ML CR 10ML: apply 1ML to dry skin and rub in every 6 hours around the clock. 9. Iprat-Albuterol 0.5-3 mg/0201-3: Nebulize 1 unit every four hours as needed for shortness of breath. 10. Miralax powder 527gm:
I think I may qualify to be a doctor in my next life.
she is a little more out-of-it (unaware), but it is worth it ass long as she is home and comfortable and pain free.
I believe it a mixture of Ativan, Benadryl & Holdon. It may be sometime made special for Hospice. No one I have talked to have ever heard of it but it does help.