It never stops!!! With his OCD, and his dementia, he is still alert enough to go looking. Since the meds are now locked, he found Metamucil and has been over consuming it. I thought something was wrong with his bowels! I also had to hide the herbal teas. He was putting 4 tea bags per cup. Some have medicinal properties. Those have gone into hiding as well.
But I Have to go to bed around 9. He stays up for hours. I bought apple juice to sweeten things for him as he is pre-diabetic. The next morning, it is almost gone. I now have help during the day M-F. But the nights are tough.
I don't want to put him into a facility. They are not where I want him. The only quality time we have now since he can't talk anymore is when he comes to bed and I hold him tight. It almost seems normal. (now that he isn't constantly going to the bathroom!) It feels like before. Everything is ok with the world. For a few hours, I have my love with me. I can't give that up.
Anything more I should be prepared for as he gets worse?
Most of us never planned on spending the rest of our lives with our parents. If we have to separated from them because of their illness, well, that is sad, but we adjust. It is not the end of a lifelong plan.
But most married people do expect to live with our spouses the rest of our lives. To be separated because of illness is life-disrupting. It is not in the natural order of things. It is devastating.
I have seen caregivers struggle with the decision to place their loved ones in a care center, both for spouses and for parents. It is a heart-wrenching decision process for anyone. FlemingD, I can really empathize with your desire to keep your husband home with you. I sincerely hope you can do it. Just know that if you have to do it it is not your fault and not the end of your marriage.
Please keep us posted on how this goes for you.
Please note that 1 out of every 3 caregivers dies leaving behind their love ones. What would happen to your hubby and to your Mom if that should happen?
You posted "I don't want to put him into a facility. They are not where I want him." It will come to a time where there won't be a choice, but you have to place your hubby and your Mom in a continuing care facility where there are professionals who have dealt with this type of illness for many years. Otherwise you will be trying to work 168 hours a week caring for both members of your family. No one can do that :(
Could you consider help between 8:30 and 12:30, whose last job of the night would be to help your hubby get ready for bed?
It is hard to predict what might develop as the dementia worsens. Most persons with dementia reach a point where they need 24 hour supervision. It sounds like you have already reached that point. I could not sleep while my husband was up. Does he sleep late? Could you change your hours to match his? Otherwise I think you need someone else there.
I know what you mean about wanting your husband at home with you. Depending on how his dementia develops that may or may not be the best for him. Try to stay open to the possibility of someday needing to place him where his needs can be met 24 hours a day.
Best wishes to you as you continue on this journey.