Wednesday, February 1, 2017


This is the last of my 4-part, 5-years-later series, for now. Thank you all for the outpouring of love and support and kind words as I've posted these, one by one. 

Two weeks ago, the nursing home called to inform me that, since her last visit to the hospital, Mom's health continues to decline. In the last 4 weeks she has stopped feeding herself, and she is no longer walking. She may have another UTI, hence, another ER visit was pending.

I interrupted the nurse: "This is a big problem. You can't treat her and the hospital doesn't want to. I need help." I told her everything I wrote in the last post, and asked her to put me in contact with a social worker, or Hospice, or anyone that could help our cause.

I spoke with a social worker next, who initially offered up monthly support groups. I'm sure these are invaluable to many people, but I've been engulfed in this disease since 2002, and I can't think of anything more exhausting than to show up and drown myself in it with 30 other people every Tuesday night.

NOTE: That is not advice from me! It is sheer, fabricated speculation! I don't know if it's 3 people or 30—it simply wasn't what I was looking for.

What I was looking for was medical and spiritual solidarity during the next inevitable crisis.

I need someone to meet me at the emergency room--and to give me guidance about whether or not to let the staff order a $7 antibiotic. I didn't know how to make that call 8 weeks ago, and she got the antibiotics, and now she's worse, and—crap! Is that my fault? Was I supposed to not do that? Was that what the ER doc was trying to tell me? Did I miss the wink-wink, nudge-nudge?

I still don't know what I was supposed to do at that appointment in December.

Ten days ago I signed my sweet mother's care over to Harbor Light Hospice.

My mother is not at death's door. She is, simply, declining as her disease advances. She now has her very own nurses, twice a week, and 2 CNA visits a week. We have our very own Hospice social worker. They will all monitor her closely, and take their time with her. She gets an extra bath, and lotion on dry winter skin, with a few extra luxuries that the overworked and overwhelmed staff of a financially struggling (Hello, Illinois) nursing home* cannot afford. She has a new bed that suits her needs, and a comfy new wheelchair with a high back and foot rests.

These amazing people will also be there when I need them. They can prescribe medicine and bypass the emergency room, or they can advise me, when it's time to stop the meds and keep her comfortable.

I met with all of them this afternoon at the nursing home, along with the Hospice chaplain. A female chaplain, I like her. As long as I'm spilling my guts, I'll confess that I think I feel more comfortable with a female chaplain. She followed me from the meeting to Mom's room today, and she baby-talked Mom just like I want her to: "Look at that great eye contact!" and she says all of the right things to me, like "Oh, my goodness, what a great job you have done," and "oh, that must have been so hard."

I didn't feel silly asking her to take my picture with Mom, and she remembered my telling her that Mom liked soft things, and she's raced for her fuzzy pillow when Mom became agitated. 

There's an odd juxtaposition at play for me right now: I'm ensuring comfort for a pain-free passing when the time comes for my mother, which is such a grown up thing to do. So mature and responsible, for a mere 54-year old. At the same time: "My mommy! Will you please take my picture with me and my mommy?" I'm really not sure I'd let myself be such a big baby with a male chaplain.

I like our entire "team!" Her nurse is George, and the chaplain is Karen, and the social worker is Deb,  and I don't remember the names of the other two offhand because I'm stressed but it is an incredible relief to have these 5 in my corner.


So here we are again, rolling with Alzheimer's punches. Each new round of decline has challenged us, at times pulling the rug completely out from under. We stand back up, dust ourselves off, find a solution, and then sit back...and wait for the next.

From here on out, I think, we'll be ready for it.


*My mother still has caregivers at Champaign County Nursing Home. I can never say enough good things about them, and I feel blessed to have so many people that have taken such good care of her in the last 5 years. Even when they are tired, or when there is a miscommunication, or when I'm not quite sure where Mom's blouse came from—I appreciate each and every one of them, and baby--dont' sweat the small stuff! They picked up where I could not, and I will always be grateful to them.