Day Center (acceptance), Seizures (under control) and "red tape"

I received a Christmas card in the mail recently (Feb 1^st), which inspired me to finish this post I started in December.  Since Marcia’s seizures in October, my “to do” list has lengthened, and at teams seems unmanageable, and blogging can always wait another day. 
                                     
I’ve previously written about our “plan” to start Marcia at the Day Center a few days a week and increase the number of days gradually.  In time, the plan was to supplement Day Center days with in-home health care.  With the seizures in October, our timetable has moved forward faster than I had planned.  We have been adjusting Marcia’s medication since her release from the hospital in October.  While the seizures seem to be under control, her cognitive functioning has not really returned to pre-seizure levels.  Speech, which has deteriorated over time, is predictably poor.  But she has more trouble getting dressed and needs assistance on a daily basis, mostly with her shoes.  While incompetent still, I’m getting better at helping her put on eye liner and “doing her hair”.  I’ve recently learned these are “left brain” activities.  Memory is still less of an issue.

Since the last posting, Marcia has become more comfortable with the Day Center.  This has been a huge blessing.  I’m sure there are several factors that have come into play, but I give the Day Center credit for working really hard to find the connection appropriate for Marcia.  We also adjusted her pick up time slightly, bringing her home a little earlier.  Time and familiarity with the routine, staff and other “guests” has made her feel more comfortable.  No longer is getting her ready to go a challenge.  Through the Lotsa Helping Hands website, we have frequent visitors to ensure Marcia isn’t home alone very often.

Holidays and paperwork have also been a big headline of the last 8 weeks or so.  Claims for long term care insurance, which started in October, continue.  Our insurance company is thorough, which is a little frustrating.  It seems like every week there’s a new request for more information.  I started this process more than 3 months ago.  Social Security disability paperwork has been filed and I hope for a quick resolution so we can make sure Marcia has the care she needs. I have also found an agency and a “companion” for Marcia that we hope to start soon, after Social Security and insurance is able to help out.

This year the holidays brought more fatigue than happiness.  While I enjoyed time off work, I found the materialistic part of the holidays a chore.  It’s been 3 years now since Marcia’s diagnosis and Marcia doesn’t drive, shop or do Christmas Cards.  I took on those tasks this year and was just happy to get them over with. 

This holiday saw more sadness than normal.  Throughout Marcia’s illness, I’ve been amazed how strong she’s been, and she’s not shown self-pity or depression.  But one day I found her crying and I don’t really know why.  She wanted to tell me, but all she could say was “kids”.  I’m sure she’s aware that she can’t be the mom she was, or wants to be. Going back three years ago when we got her Alzheimer’s diagnosis, her first reaction was around our kids, and knowing this diagnosis was going to change everything.  I can only assume not being the supermom she was is heartbreaking for her.

I also saw tears and sadness from my daughter while in Maine, where Marcia’s parents live.  Marcia hasn’t seen her parents since July and the kids haven’t seen them for about a year and a half, so this was a long overdue visit.  Whereas Marcia’s parents once lived in a two story home on a gorgeous like, they downsized into a two bedroom condo up the coast of Maine in Rockland and this was our first visit since their move.  While the move was very appropriate for them, their new place made for tight quarters.  At home, the kids’ have their rooms, the basement, friends and activities to keep them busy (and distracted).  In Maine, I think they got to see more of Marcia’s illness than they normally see.  Our last night in Maine, my daughter was in one of the bedrooms curled up in a ball on the floor crying saying she can’t take this anymore.  I think the constant exposure to Marcia was a bit much for her.

I’ll end this post on a positive note.  Riley has finished her college applications, and I have completed her financial aid forms (more @#$% paperwork…..).  Riley has heard from one college so far, with an acceptance to Penn State.  Only 8 more to go!