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I hope you will understand my reason for asking this question. My MIL's bed has been in my living room for 2 years -She is totally bedfast - dementia. Long slow decline. Lately, she's begun talking a bit again - like she was 6 months ago. I wonder how it will be if she improves? I am being brutally honest by asking this question. I think it scares me...........that this "hamster wheel" will never stop turning. Does anyone else secretly have this fear?

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Maria, I am in the same place you are. However, I was working full-time when my mother went into decline. I could not quit working, so I placed her in an Assisted Living Facility. She is 97 and is like the Energizer Bunny. She goes down and rallies, and it keeps happening.

I know that I will be sad when she finally passes, but I will be relieved when she is in no more pain or suffering. She is in Hospice, and she is now at the stage of not wanting to eat. They are a godsend and have kept me sane during the last nine months. I just could not do another ER visit.

You are not alone in how you feel. Trust me. Your feelings are shared by many on here.
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I can relate to what you're saying. It's almost like you fear gearing yourself up for more disappointment. I know what you mean. When my cousin, who has dementia, seemed to be improving on some areas, I was so happy, but I was afraid to get my hopes up, because she suffered from step downs in her decline. And it did happen. She might seem better, but in a few weeks she was not doing better. It's a roller coaster ride, IMO. I don't know of any good answer. It took awhile for me to accept that she would not really improve.

Do you know what type of dementia your MIL has? Is she on Hospice? Have her medications changed? Is her diet the same?

Do you intend to continue caring for her in your home? That sounds like a huge job. I hope you have some help.

I have also heard that some terminally patients get better before they get very ill. I'm not trying to scare you, but wanted you to consider that. There is likely someone on these boards who has seen that happen before. Please let us know how you both are doing.
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Sunnygirl, thanks for taking time to respond to my question. My MIL has been on hospice for 14 months. Because her personality is so screwed up..........it feels like she is faking sometimes. I know she isn't... but sometimes it just feels like it when she all of a sudden starts talking.
My husband and I fought his cancer for years and the final 3 months were filled with horrible physical pain. The day before he died.........he rallied and it was wonderful.
His mother.............well this is different. She has no physical pain and she is becoming more lucid over the past week. No change in meds - nothing I can put a finger on. I feel bad saying this but an improvement means a longer .......more of the same. I hope this makes sense. It just gets so long. My sweet husband died 4 1/2 years ago and I was his loving caretaker. He was a gem and I adored him. His mom is tough - often nasty. Quite a different experience. And she has been here for 2 years with no end in sight.
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Oh yes, Marialake. There are many people who share your feelings. It's normal. It sounds like you are exhausted. Have you considered another arrangement? Maybe some respite time or a Hospice center for her. You can still be involved, but not on duty 24/7. That way if she continues to do well, you will be able to enjoy that time with her and not be overworked and stressed out. I would at least consider the options. I realize the concern of relocating her at this stage, but this could continue for years. It's a tough situation.
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She is one tough lady. As long as she is eating and drinking, she will keep going. Often bedfast patients are done in by pneumonia, or runaway pressure sores. Obviously you are a doing an amazing job.
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