Although a member of the LBDA community since 2010, I have rarely posted mostly because I didn't know what to say. Well perhaps I have now found my voice. Perhaps I have not wanted to truly acknowledge the fact my Dad is leaving us. In a nutshell, Dad lives in an all-inclusive Alzheimer/Dementia facility and has been diagnosed with LBDA for about 4 years I think. He is also currently on Hospice who have been absolutely wonderful with him. I received a call from Hospice this morning in regards to a massive change in Dad. Since he broke his hip in July 2011, he has remained in a wheelchair and has tried multiple times to get out of it falling more times than I can remember out of it. He has been able to feed himself (with his hands) and was even singing Elvis songs up to Christmas. When Hospice called, they informed me that Dad has started leaning way over to one side of the wheelchair (high back) and his appetite is diminishing. Along with that he has been sleeping a lot more and unable to help get himself into the wheelchair assisted. He has had bad bouts before but always seemed to bounce back before. Now, I don't know what to make of all this. It started happening about a week ago. Ironically, the AL nurse called about a week ago saying Dad had a lot of phlegm and had a hard time swallowing his food because of it. She suggested Robinul to dry it up? Does anyone have any experience with this? Please help....I'm really worried. Also, I am unable to visit him because I have pneumonia which I certainly don't want to spread.

My heart goes out to you, TxLady. Hugs!

I hope you are taking good care of yourself. Ask your doctor when you are likely to be no longer contageous. I know you don't want to put Dad at risk, but I think your presence is very important now, for both your sakes. I don't think you have to wait until you are completely well. Talk to the doctors.

That he is on hospice means that qualified medical pesonnel think he is in the last part of his journey. Dementia complicates that judgment call, and your dad may bounce back to baseline again, but it is probably a lot less likely now. Nothing is certain. Take advantage of all that Hospice offers, including information and counseling for you.

Again, hugs to you. Keep in touch and let us know how this progresses.

TxLady130,

The leaning isn't a sign that the end is near. If your dad is sleeping more than 21 or 22 hours a day, that would be a sign the end is near.

Certainly a change in appetite is important. Is the hospice agency willing to say your dad is within a few weeks of death? It's often very hard to put a number on things until time is short.

Robinul (love that name!) is an anticholinergic. Since your dad isn't walking at the present time, it might be OK to try this medication. He needs to be observed very closely though as there are plenty of other bad side effects (besides impairing walking ability). My personal (layperson) view is that anticholinergic meds are fine to give near the end of life as the comfort they can bring is key.

Good luck,
Robin

Is there any way you could visit your dad if you had on a mask? Or, can your dad be moved to where you live, if the end is near?