It Breaks My Heart to See You Struggle...

I guess I am not going to get much sleep tonight.  Pam woke me about 1 am.  She was wrapped in a towel and needed help in the bathroom.  She wanted to take a shower and all she could get was cold water.  Apparently, she has forgotten how to operate the shower knob.  So I adjusted the water temperature and helped her into the shower.  I told her to holler if she needed any help.  A few minutes later, I hear this loud groaning.  I had left the shower water too hot for her and she was proclaiming that she was being scalded.  After adjusting the shower temperature, I suggested that she move the bamboo shower stool to the middle of the shower and sit down.  We have a large walk-in shower and I bought her that stool for shaving her legs a couple years ago.  When she finished her shower, I went into the bathroom and shut off the water.  About ten minutes later she called for me to help.  She was having a hard time  getting her bathrobe on.  I noticed that her right arm was in the left arm hole and she was struggling to get it on.  

Today is a major way point on this journey.  Until now, I have felt that Pam was good with her ADL's (activities of daily living).   Before now I felt that she would be able to continue to live in the condo if something were to happen to me.  But no more.  She is no longer able to live on her own without a caregiver.  It is a sad day.

I have been working on, albeit slowly, securing in-home care assistance.  Today has raised the urgency a notch or two.  It's not that I can't provide all the care that she needs right now.  It is because being the primary caregiver is a 24 hour job.  So far I have not felt the need to get away from the condo to do something else, but I can feel that need rising.  But am I going to find someone that I trust enough?  Someone that will care as much as I do?   I struggle with that.  And even if I do, is getting away and doing something without her going to be possible.  Or will I spend the time worried about how she is doing?  Time will tell.

Currently, I am trying to arrange an in-home assessment with two providers.   They use that to evaluate the home situation and the patient, and then propose a plan of care and the services that they can provide.  To my surprise, I have ruled out one agency so far.  Before you can arrange the home assessment with Visiting Angels, you have to complete two forms.  The first is to highlight your personal interests, hobbies, etc.  The second is to build the patient profile and demographics.  But it includes providing them with the detailed contact information (and copies of the documents) for your financial and healthcare Power of Attorney, along with all your medical team.  That level of detail is certainly appropriate once you have decided to engage in a business relationship, but seems premature for an in-home assessment.  So they are out for now.

I find that I am getting more and more emotional lately.  I can't even read a short blurb about us without tearing up.  This disease is devastating.  It is cruel and unusual punishment.  I understand that this same comment is probably made by caregivers for cancer, MS, and many other patients.  Seeing what it has done to someone we love is emotionally wrenching.   Watching Pam struggle to take off her shoes or put on a shirt is so painful.  And knowing what is ahead, I don't even want to think about it.  What will days be like when when she loses the ability to talk or even fails to recognize who I am.

And lastly, I can not say enough good things about the support group that I am in.  I went into it without any expectations.  I am not one to talk about touchy-freely stuff or how I feel, especially to strangers.  But there is something different with this group.  Begun by the Alzheimer's Association as an eight week program, the group has remained active for two years.  They continue to support the group with an excellent moderator and the Zoom facility.  The range of caregiver experiences in the group is invaluable.  I have learned so much.  But beyond that, it is more like a band of brothers.  The encouragement and emotional support has been amazing.  I am so glad that I joined them.