"typical" behavior

Timmyd

We periodically check in with DW PCP and have regular visits from our palliative care nurse. DW's behavior has changed quite a bit as the disease progresses. However, it seems no matter what behavior I describe, the response from the medical professionals is always the same, "that is typical". Sleeps all the time or cannot sleep… eats everything and puts on weight, or won't eat and loses weight.. sits all day, or moves all the time… pleasant and cooperative, or angry and mean…. Likes to be around people or wants to be alone. Other than actual evidence of recovery, I am having a hard time imagining any behavior of DW that our medical team would not describe as "typical".

persevere

Insightful observation timmyd. I find similar conversations with hospice. Honestly, I don’t think they’re necessarily wrong. However, I pressed hard on the fact that my DW was on her feet and jabbering literally from the time she woke up till the time she went to bed. I don’t really think they believed me for awhile. I got the same ‘typical behavior’. But as I pressed I finally got ‘well I saw one lady in a facility once that did the same thing’. Geez.

blacksparky

I think they say typical because as you all know everyone progresses differently and with different signs. It’s not like cancer where the DR’s can give you almost exact time that things happen and the right treatment to give. I really hate this disease!!!😡

sandwichone123

I've been on this board for about 4 years, and I've seen all of those things. Still, something can be typical and still need to be addressed, like threats, violence, sleeplessness that endangers the caregiver, etc. If you feel like behavior needs addressing, you might say something like, "yes, I understand this happens, but if I can't sleep I cannot provide for her safety."

SDianeL

ask for medications to calm her.

howhale

I heard and read much the same response, "typical". The more I read and talked to others experiencing this disease and caring for a loved one up close, I came to see that almost any behavior is typical for different people with the condition. There just is not any firm pattern of progression and behaviors with this horrible disease. That is what made this site so invaluable to me throughout. I could test the next surprising behavior here and find that I was not seeing things nor mistaking her actions. It had been seen and experienced before by someone. I gave up early on trying to monitor what stage my DW fell into. It was not helpful and nothing could change her path so just deal with the hand you get day to day. I continue to bemoan the fact that resources such as this one and a few others are not provided, promoted, publicized widely to help others. I stumbled upon the site but it saved me in so many ways. The only thing typical about this disease I believe it that we all know the outcome from day one, cannot change it and can only protect and make comfortable our loved one throughout.

Onedayatattime