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It is probably time for the doctor to adjust meds yet AGAIN.. It seems like nothing I am doing is working. He wants me to sit next to his bed at all times. Open this shade, close the shade, Well that cannot happen nor can I take that. I feel so sorry for care givers who have not put all legal documents in order BEFORE you get to this stage of their illness. I could easily just walk out if I did not know that in the end, everything will be Ok and I can once again get on with MY life. Now he is at the point that he thinks I am stealing from him and cannot quite figure out who I am. He sees people and wants me to tell him who they are.

I do everything I can to help him relax and there seems to be no answer. He does not recognize where he is, and is becoming more insistent about getting out of bed. I sense that there is going to be some heavy duty differences between us coming on in the near future.

In a matter of two days, he no longer knows who I am. He will love me one minute and question everything the next moment. I cried myself to sleep last night.

At the beginning when he was just placed into Hospice, he was cooperative and I thought wow, this is going to work so well and he will peacefully pass on. Well it is now evident, that is not going to be happening. If he becomes physical and violent, there is no way I could continue to care for him at home. I will have to live with the guilt of doing what I promised him I would not...I will have to place him in a care facility. If he is locked in, he will probably only get worse.

I am exhausted. He was up all night for TWO nights. Yesterday he slept for 10 straight hours. I finally got some rest. When the nurse comes he is a different person and very pleasant. I am sure the nurse understands the changes that are going on, but they get to leave and I am here facing a man I do not recognize any longer. Finally, he has a sleeping pill and it works. But for how long. His illness overcomes just about all the drugs.

I pray that God does not allow him to suffer like this for too long. The mental pain he is experiencing is much harder than physical pain. Physical pain can be controlled with pain meds. But mental confusion seems to just get worse. He fiddles with the sheets and blankets, and is continuously pulling off his oxygen.

I just turned on his favorite show and if I continue to replay it, he is quiet. I must continue to tell myself that the man he is at the moment is not really him. This is not his fault, it is the terrible illness of dementia, loss of memory and parkinson.

Does anyone out there have any suggestions? Can I just walk away from his bed and let him rant? He is like a baby who is crying and you have to walk away from the crib and let them cry themselves to sleep. I have no answers any longer.

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Oregongirl, I am so sorry to hear that his disease has progressed so rapidly. I know that you are committed to seeing this through to the end. You have contributed greatly to this forum and to our understanding of the disease. Please know that my thoughts and prayers are with you and your loved one.
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cwillie. Yes it happened so quickly. AS I said in the past, I thought he had a minor stoke but the nurse did not think so. I differ with them. He is such a sweet sweet man and I know that if he had not been overcome by this disease, he would be so thankful that I did not place him in a facility to die. When we had our fire, we rented a two bedroom apt at a Senior Retirement home. It is like a 4 start hotel. UNTIL you have been there for 4 months. We found that people were like pushed through the hours of the day. Meals at certain times, dying going on all around you. Food that was Institutionalized, and management that treated the elders like they were stupid at time. Being we were not ready for living in a place like that, we felt very blessed to have tasted that life for a short time to make us realize even more that we must stay in our home and die here. When you are paying 3800 to 4800 a month to live under those conditions, you can buy a lot of help at home. Hospice is a blessing. But, the caregiver finds themselves in a position of did I do that right did I do that wrong and I am constantly praying God, please forgive me if I in anyway said or did anything to harshly. It is easy to get frustrated.

I think finding out last night that he knew me sometimes and other times not. Then he held me tight and asked me to lie down next to him. It was such a comfort to him to have me at his side. I fell asleep in the hospital bed next to him.

I have cherished every minute with him. I will miss him So very much. I want to get to the point where the mourning will stop and I can live again, but this time without him. That will be sad. Thank you SO much for your caring thoughts.
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Oregongirl, of course you can leave his bedside, especially if he is just ranting and not making sense. You need sleep, and you need me time. Remember the advice to put on your own oxygen mask first! Even with breaks he is still getting far more personal time than he would be given in a facility.
His health seems to have deteriorated very rapidly, it was just May that you posted how he was able to retire to his room at night and watch TV and stay home alone if he didn't want to accompany you on outings during the day. It sounds overwhelming.
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