Hopefully I will be able to meet Mike's hospice nurse on Thursday. The nurse we signed up with had been rotated off Mike's case and we got a new nurse about 2 weeks ago. Unfortunately, because I work, I have not met her. Mike aide has to do "in service" (they go to their agency and sit through a presentation in order for them to keep working) on Thursday, so I will be home to meet her. At that time I will be asking her about Mike's "gurgling". We have been dealing with this for the last year or so, but it seems to be getting worse. It's always after he eats and it takes us a while of moving him, pounding his back etc to get him to cough it up. I can almost say with certainty, that it has to do with his swallowing ability. What I don't understand is why this has been happening for so long.
I recently read a list of "things to look for near the end" and amazingly, Mike has been dealing with quite a few of them for almost a year. The gurgling, the drooling, the cold hands and feet, the contractured arms and legs, being non-verbal , immobile and dropped jaw when he sleeps. His eating has slowed down also and he has lost weight. Mike has never followed the rules, and this gets me quite nervous at times. So WHAT DO WE LOOK FOR? Since Mike has experienced all of the "signs" for so long now, what do I have to guide me?
I would NEVER want Mike to suffer, and I just want to make sure that we are not pushing him too much.
Follow You, Follow Me: A Young Family's Journey With Young-Onset Alzheimer's Disease
3 comments:
Karen, I only have memories of my dad's alzheimers from 20 years ago (he got it in his early 50's and lived until 71). However, I do remember his last couple of years being much like Mike's, except my dad stopped swallowing and Mike has not. My dad had a tube inserted into his stomach, and was fed through there for at least a year or two before he passed. It was a tough decision for my Mom, but then again, this is many years ago when there wasn't much knowledge out there. By my dad's last year, he was in a semi coma state and totally non responsive to anything. His heart was strong, so he lived like that for almost a full year. I wish there was some way to guide you through this, but there really isn't. The exceptional care you are giving Mike is keeping him alive. You are an amazing woman. I can't say that enough.
Diane do exactly as you are doing. You are doing an EXCELLENT Job! Go day by day, minute by minute, you are being guided already. Follow your gut feelings as they are ususally correct and Have faith and trust in God. Hope your Mom is feeling better!
Liz
Diane -I'm sorry to hear about what you went through with your dad. When Mike was diagnosed, after seeing his mom suffer from this disease, he specifically stated NO FEEDING TUBES, which has made it easier for me. Seeing him like this does not make it easier though.
Liz - I do live exactly as you said, minute by minute, day by day etc. I wake every day and pray for strength for me and that Mike is comfortable and not feeling lonely or afraid.
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