So if anyone read other post, here goes. DH sent to behavior hospital. Drugged to point of stoke like. Hospice said could do hospice inpatient. Well they turned him down when in transport. Sent to ER at hospital close. DH wS dehydrated. Admitted, treated. The. New hospice said could do inpatient. Transported get to facility said could not do one on one. Hospital will not take back unless medical condition. Stuck at hospice sitting one on one myself. No one will take him. Nothing I can do until morning. In home care said backed up to take him home and come In for me. There is no place for my husband. A dog found on street gets better care.
Dear Jackie, I am so very sorry that you have to endure this. I am not familiar with your government and health care set up but do you have someone local, a council member or some other government minister whom you could contact? Are there others here who can advise Jackie? She is correct in saying that an animal would be treated better. Jacki ,I hope that you will get some much needed support soon, from here, and from the health care system.
jackiem, I went through an almost identical situation in September 2012. DH was sent from ALF to hospital for 14 days for dehydration . He was drugged in to a coma like state because he wanted to get up and walk. Four doctors said he would not live long and discharged him to hospice. I trusted the doctors. Hospice weaned him off drugs and he has been in a SNF since. The hospice nurses told me that hospitals frequently use hospice facilities as a dumping grounds for NH patients when insurance will no longer pay for diagnosed treatment. It is a pathetic situation. Is the hospice facility being paid to take care of him? Do they have volunteers that could sit with him? I know you are stressed to the hilt as I remember the September of 2012 being the most stressful time of my life. My thoughts and prayers are with you. You need rest and I hope someone will help you.
I'm so sorry. Words don't help as much as a hug. So hard to keep trying, when there seems no where to go. When my sweet SIL was dying from lung cancer, she told me"If I were my horse, I'de put her down". I knew what she was saying then, but now I understand much better. When you can't help your hurting loved one, you can do your best all day long, and still feel further behind.
Jackiem29, Oh my dear, I went through almost the exact same thing last spring and I get it. What I found is that there are facilities who will take patients with behavioral issues. Not many but there are some. I could not send my husband back to the facility he was at before the psych ward admission and Hospice discharged him when he went into the hospital but picked him up when he was discharged. You need to trust now and it will work out. There is a place for him. Just because you cannot see it does not mean it is not there. Sending prayers.
Jackiem29, You have been in my thoughts today. I am hoping the morning brought a compassionate person in your life to help you. Hopefully you are getting the mental and physical stress relief that you deserve.(((Hugs)))
Just caught up on what's happening. I certainly hope you find some help soon. I know exactly what you mean about an animal being treated better. A few years ago I had a horrible experience in a hospital with my husband, and he was a gentle soul. Sending (hugs) and prayers for strength.
Jackie, your husband's treatment has been disgraceful. It sounds as if he may possibly need a psychiatric hospital to be able to handle the issues. He is falling between the cracks bigtime, and it is up to his health care team led by his physician to get social services involved and find him an appropriate placement, even if it isn't close to home. As CO2 said upthread, there may not be a lot of facilities that can handle the behaviors, but they are out there. Try to stay strong and keep pushing for them to find an appropriate disposition for him. This is so wrong on so many levels. You and he are in my thoughts and prayers.
Well, the doctor and nurses say it is a matter of time now. I do not think that he will live much longer. The nurse told me at hospice he has terminal agitation. No drug that they give him can make him rest. He is not eating or drinking or sleeping. They had him in a chair today to change his bed. He had to have the kind with a tray so he could not slip out. His mom actually asked me if he walked to it. He cannot walk. He has not walked in a week. She keeps saying if we get food in him he will be better. He will choke if she keeps trying to put food down him. So had a big showdown with his family. They blame me for the diease and the decisions I have made. They have not helped me the whole time. His sister said I kept him away from them. They didn't come to see him or take care of him. So anyway, I am sitting from 8-8 in the day time and have hired a sitter from 8-8 at night. I am so tired.
It is hard for the kids. Two are out of town and really want to see him. You just don't know when to come. Then I really do not want them to see him like this. Our son came, and our other daughter who lives close has been with me since Friday. She is staying all week with me. After showdown with his family, they have only come for 5 hours since. If they are so upset and want to see their brother, where are they. Anyway, when this nightmare is over, I will have memories of DH. Today he did kiss me and recognized us for about 5 seconds. He does try sometimes to tell me he loves me back. The first night he was there I climbed in bed and slept for awhile. He had calmed down. That was the first time in a very long time. I miss him so much. Will take what ever little pieces I get now. I only thought the past 8 years had been hard. But my daughter told me,"mom each part of this disease has been hard." She is right. Going to sleep and back tomorrow to see him.
So sorry Jackie but at the same time glad he will be released from the torment. (((hugs))) My SIL was the same way at the end - nothing calmed her.
As for his family when they blame you - tell them it is inherited so they have only themselves to blame. That is not totally true, but maybe it will shut them up. As for the kids, I would rather my kids see their dad while still alive then after he dies. So, you might take that into consideration whether to have them come now or wait.
Prayers for peace and strength for the days to come.
jackie, I am so sorry. I hope you can use the time your husband has left to focus on him and yourself and to screen everyone else out. Please try to surround yourself with people who care about you both, like your daughter and son. As for the other kids, unless they are minors, they should make the decision for themselves. You are doing exactly what you should be doing and we are all with you in spirit.
I hope that when this is over, you will be able to separate yourself from your husband's family. I can't imagine where they got the idea that it was appropriate to have a showdown with the wife of a man who is on his deathbed.
Jackie, you have a 24 hour guard for your husband now, well done. Without any support,you have managed to give him comfort and peace. I remember all the previous vile actions of your in-laws so I wouldn't even waste my strength speaking to them now. Hope that you have managed some sleep and please know that my thoughts are with you and I shall now light a candle for you both so here in Australia there is a light burning for you. Cassie.
Jackie, just hang in there and stay strong. On some level he knows that you are there for him and sticking by him through thick and thin. Don't even give a thought or one iota of your precious energy to family issues right now. I am just so sorry for the hard times the two of you are having. He is lucky to have you, and there are many people out there who could not even begin to handle what you are dealing with. I'm thinking of you and sending all the emotional support that I can through the Internet and ESP. (((((( Hugs))))))
Jackie, I wish peace for you. You have been so courageous and have fought valiantly for your DH through this entire nightmare. Save your strength for yourself. Sounds like his family has shown up with too little support and too late to offer it. I will keep you in my thoughts and prayers.
Well, he is finally calm. They are giving meds every two hours. They are giving morphine for breathing. He has been asleep since 3:30 am. So 18 hours. Our youngest daughter is at airport now. The other daughter is picking her up. The one in NC is coming in morning. I think he really wants to hear their voice. They are really good kids. We have two girls and he has a daughter and son from previous marriage. Our anniversary 31 years was September 8th. The kids all four have been so supportive and will take care of that part of family. They all said that they would do anything I need. The two that have seen him, saw the torment he was in. I am glad our youngest daughter didn't. Wish none of them had. He was a great husband, dad. He never got to know the 6 grandkids, but I know he would have been great with them. My daughter that has been staying with me, and her husband have done so much these past days. Not sure how I will adjust after this. For years my focus has been taking care of him. Today was the first day he didn't move when I talked. It was like he has know when I entered the room, until today. They say the hearing is the last to go, so I know he hears me.
Thank you for all the support here. I know that everyone here knows what I am feeling and will be after this. Even though I don't want him to suffer anymore, and I really lost him sometime ago, I can't let go. I told him I would be fine, he taught me how to take care of myself. He did a great job.
jackiem, Knowing you have the support of your family during this heartbreaking time will give you strength. Rest all you can. My thoughts and prayers are with you.
Oh, Jackie, I am so, so sorry that you have to go through this. It seems like yesterday that we met in DC, and you were reeling from just having placed him. There is no getting around this - it is the hardest thing you will ever do. But your love for him will give you the strength to get through it. Believe me when I say that I understand and empathize. It was just 3 months ago that I endured the same. Loving him and being with him at the end is the greatest gift you can give him.
I am so glad that he is comfortable now. I am also very happy that you have your kids gathering in to help provide support. He is blessed to have you all at his side! And for that very reason it is obvious that he was a very high caliber person. You are in my heart and prayers!
Everyone has been to see DH and say good bye. Although his mom keeps saying things like everyone is praying you will get better. I don't know what the heck she thinks. I just feel like he is hanging on because of her. His breathing is so labored. The nurse popped her head in and then came all the way in. She thought he had passed by how long he had between breaths. Still no peace for me. Hospice will only keep him so long. Even though he I'd dying. There has been so much that I have had to learn. I thought hospice let you stay. They will but our government will not. Thank you for this healthcare system!!!!!! What they changed is not good for the majority of the people. Ok not time for politics and just my opinion. Not sure why DH will not go.
jackiem29 I can't imagine how difficult this is for you but I will share with you what one of my support group shared with us and she has given us permission to share her experience. Like your loved one her's was in hospice and struggling to pass on. A long time hospice nurse asked her if she had given him permission to leave and reassured him that she would be alright. She told the nurse" he can't hear me!" The nurse said we don't know what they can or cannot hear. She held him in her arms and gently told him it was alright to go and that she would be fine and thanked him for caring so much. He let go of this world about a half hour after. Since I heard this others have agreed that they have heard or experienced the same thing.
Jackie, I too am so sorry for what you have gone through. I don't know if this will help at all, but when my DH was on his deathbed in July, I also told him what the Behavioural Service Officer told me; she said that after all these years of having NO control, I should give him back his POWER, and tell him that only HE and God were in charge of when his time came. It was giving him control again. I told him that, telling him that I would always love him, and if it took years, I would be there for him, but he was in charge!
That evening (as in the previous few days) I asked staff to make space for me in his bed beside him, to hold his hand and be close to him. About 11:30 p.m. he was again 'refreshed' and positioned, and a place made for me. The staff told me to keep talking to him, as at this point he could hear and understand. I held his hand, talked to him, sang softly (he couldn't escape my singing ). For my DH, the touch seemed to be important. I held his hand, and often stroked his brow. Then we both fell asleep.
At 1:58 a.m. I woke, startled, to hear a huge sigh from him, and then he was gone. I had been holding his hand, and with that huge sigh, I believe he was letting me know he was leaving. I held him and cried, but they were also tears of gladness. The look of peace on his face was like the look of my old Rene. He had transitioned and was as last FREE of this terrible disease. This disease had robbed him of so much ... the ability to speak, pain, breakdown of skin on his back, involuntary yelling, total incontinence for a very dignified man, having no say in what anyone did to or for him, being fed ... he had lost so much!
I don't know if this will help, but your husband KNOWS ON SOME LEVEL that you the family are with him, and perhaps knowing it is within his power and God's to decide to let go, he may let go.
I hope, so, Jackie, and that he will finally be at peace. God bless. Margaret
Jackie, I think that at this stage it is only love that keeps us going and your dh can feel yours, in spades. I know how dreadful this time is so all that I can do is wish you strength. cassie*
I did lay next to him. I am holding his hand and rubbing his shoulders. I have told him that it was ok. That he needs to do it for him. He responds to me in some ways. I know he hears me. It will be his timing and Gods. It is so hard. I feel like all the people coming and going are not giving him the peace he needs. I have about 30 minutes in the morning just he and I. I come home and leave him with a sitter. They told me sometimes it is when they are left alone that they feel free to go. People keep asking me questions of what I plan to do after. I said sleep for a month and nothing planned after that. I cannot think past now.
Sorry, but people asking you what you are going to do "after" while you are going through the hardest experience you will ever have, are just plain stupid. Ignore them.
You just concentrate on letting him know that you will be with him during this time. Believe me, he hears you.
I am so sorry that you are going through this, but glad your family got there to see him. Unfortunately, we do not know when our loved one will leave us. At least he's in a peaceful state and that is a blessing. Sending my prayers to you both.
jackiem29, You are doing the best you can do for your DH. Try to ignore negative comments and questions from others. Just soldier on one hour at a time. You are the only one that knows how you feel about this heartbreaking situation. My thoughts and prayers are with you. A gentle (hug).