This is what I have learned from dealing with doctors, social workers, nursing home employees, government officials when trying to help a loved one with a disease they cannot manage:

1.  Don’t trust anyone!  Just because they have a title doesn’t mean they know what they are doing.

2.  Take notes on EVERYTHING – you never known when you will need it, and you will forget details over time even if you think you possibly couldn’t.  This includes doctors names, appt. dates, medicines prescribed, dosages, notes on behavior of your loved one and staff employed to care for them.

3.  Trust your instinct, your gut feeling.  When I started out I relied on friends/family to guide me but I have realized even those much older than you may not know more than you do.  I wish I had made some different choices and now discount what I hear and rely on my internal feelings when making decisions regarding my Mom.

4.  Watch the medications they prescribe closely.  They treat pick’s patients like guinea pigs as there is no medicine that can really help this disease, and everyone responds differently to various medications.  My Mother has been on over 10 medicines and these have been changed over time.  I will write another post regarding medications later.

5.  Make sure you are firm with the staff.  I am very young looking and soft spoken, so I believe some thought they could get away with whatever they wanted.  You need to make your voice heard, and if they don’t like it too bad.  Back in the beginning, when I was naive, I wasn’t forceful, thinking the staff knew more than I did but not anymore.  I am now comfortable talking to everyone, from the CNA to the Social Worker to the Administrator, letting them all know when I am not happy.

6.  Don’t take it personally.  This applies particularly to nursing home staff.  I have tremendous respect for the workers as their job is unbelievably stressful and they are not paid properly – one of the great ironies of life to me.  This said, you will find employees who are not as polished socially and they will say things that are inappropriate at times.  Pick your battles.  I remember one lady who would nag me about the way I dressed my Mom, being very annoying, but at the same time I believe she was good to the patients which is more important.

7.  Don’t be afraid to complain if the staff goes too far.  For instance, my Mom used to get very anxious at Concord, and try to leave all the time.  They would call me and normally I would come up as I lived so close.  I never told my Mom when I would be there, because that to her would mean right now and she would become problematic at 4am.  One day when I was working I received a call from a angry staffer who said my Mom kept trying to leave and if I didn’t get up there right away she would have her shipped off.  Shipped off to where I wondered, immediately worrying they would send her to a psych ward and overdrug her as in the past.  I had her Sister go up there to check, and she told the administrator what happened and how the lady threatened me and he laid into the employees and apologized for their behavior.

8.  Watch the Drugs!  I have had my Mom overdrugged too many times and I will not tolerate it.  Concord was always pretty good about not doing this, another reason I liked the facility, but one day when I picked my Mom up she was clearly given a downer as she was incoherent and sloppy.  I was furious and told the nursing home I removed my consent for Adavan immediately.  They claimed she hadn’t been given any, and I asked why she was so out of it and nobody knew.  I set up a care conference and let them know this was not acceptable – they still deny to this day not knowing what happened, but I personally believe either a staff member gave her extra meds to calm her down or my Mother somehow took someone else’s medicine – neither of which are acceptable as it is the facilities responsibility to ensure this does not happen.

9.  Have patience. My Mom can be a handle at times, especially if she knows we are going somewhere, such as on holidays.  She wants to go right then, and will repeat this and follow you around until you leave – then want to leave the place shortly after and return home.  She also doesn’t listen and if you do not watch her closely will do things that can endanger herself or others and letting her know this doesn’t help so you just need to have patience.

10.  Keep loving them.  Simply, wonderfully put by a social worker Tracy at Concord “just keep loving you Mom like you have been”.  Never stop as this disease was not their choice and they have no control over it.