My Moms current stage - anyone have this situation??

This disease is so dam sad and heartbreaking.......... the long goodbye.

Thank you for any ideas or info to help my Mom

Doreen

SnowLynne

She is in a nursing home where they have Doctors on their panel.  When they go to the nursing home to check the patients we are not informed. All responses are handled by the nurses.  My Sister went above heads and called the doctors directly yesturday, the main one was the psychiatrist to ask if he could put her back on an anti-depressant - he scolded her for calling him and going outside the normal protocol of the  nurses only calling.  He said he could not do anything without seeing her and speaking with the primary care doctor.  The primary care doctor does not return the calls. Only speaks thru the nurses.  We cannot remove her from the nursing home as she cannot walk anymore.  She had 2 TIA's in August and went downhill after that, then she had another seizure that lasted about 3 minutes Thursday at about 3 AM.  Since then, she does not stop screaming.

As far as a neurologist, I do not think one has seen her recently.  That I will take up with the nurses and see if it is possible. Hard to diagnose her since we cannot speak with her or get an answer from her if we ask a questions.  I hate this dam disease and what it has done to her.  Scary thing - she had 9 sisters - including her, 4 of them have been diagnosed with AD, one of them passed away 2 years ago.

Thank you

Doreen

My Mom has been on aricept and another AD medication for years now. She was doing fantastic until December 26th 2006 when she fell at the nursing home.  She loved to walk and would walk thru all the hallways to visit everyone,a very loving woman. If there were people to see and talk to, music playing - she was happy.  She loved to sing, dance and smile (and flirt with the men). Then she fell...she became very combative, cursing, spitting, pinching, biting - you name it.  They then had to send her to a "crisis center" which was basically for drunks, drug addicts etc., at a local hospital.  That was New Years weekend of 2006. We stayed with her and did everything to keep her calm, but, she even fought my sister and I. They had her strapped down arms, legs, etc.  It was horrible.

Finally they got her stabilized and returned to the nursing home . But she was never the same.  We had all tests run, even thought maybe she had had a stroke, but, all results of tests came back negative. They kept her on antidepressants, her AD meds, sinus meds.. then slowly started to take her off of the anti depressants, etc. But stayed with the AD Meds (they wanted her off of that too, but we refused).  Then in August she had a few mini strokes and slipped further away.  She cannot communicate with us, she is bedridden now, cannot walk or sit up. Her hands are kept in fists, closed up and if we try to open her hands to trim her nails she would scream in pain. Now, it is just screaming. The only reason we think it may be due to some type of pain is because when the medication finally kicked in and she was dozing off, the screaming turned into the words.... ow, ow, ow, ow (very gently and quietly).  So, we are assuming she is in some type of pain.... Right now she is on a low dose of darvocet, a pain patch, aricept and thats it.  They are waiting to see if that helps, she has quieted down, but that is because she is sleeping.  If the pain meds do not seem to ease her screaming, etc., then the psychiatrist will examine her sometime next week to see what he feels it is. 

Just want her to be at peace.......

Doreen

Thank you again,

Doreen

Thank you for your reply and your suggestions.... It is so difficult to see our parent(s) suffer this way.  I am so sorry that both of your parents have been hit with AD, that is even more difficult.

My "me" time is on the computer. I work full time, and right  now it is even more stressful as the owner/president of the company (very small one) passed away on Nov. 9, 2007 after a short illness, so everything is changing there and the other 2 people who I work with in the office do not like the changes, so they keep fighting and complaining.  And me, I am just thankful to have full time job and be making a paycheck.  We do not know how long that will last with all the problems with the mortgage industry, but, we are fighting to keep going (me and the 2 full time appraisers that it).... Plus, trying to help out my late bosses wife with all the changes, etc. Plus, I have 2 daughters and am a single (divorced) Mom.

However, I know what  my Mom is going thru within herself is worse than all of that put together plus...... 

Unfortunately, I think what happens with these doctors who take care of elderly patients with different diseases that are not curable, is that they have to put up a wall in order to block out all the suffering and eventual passing on. They get that wall up so high and thick that they lose all compassion for the patient and their family, which is not really fair to anyone.  My Mom's physician (thru the Nursing Home) is like that.... He gets you so mad.....  As he states "we don't really know if she had a siezure or what was going on, the only way to know that is to put her in the hospital for tests". or ----- when we ask if (in his opinion) he feels we are doing everything we can for her, to keep her comfortable, etc." his response "we have been all thru this conversation before".  Now, tell me, what kind of answer is that??

I went to see her tonight, it is obvious she did have some type of siezure or TIA - her right eye doesn't open all the way.  If I try to hold her hand or touch her gently, she yells out.  Even if I try to sit on the end of the bed just to be close to her, she yells out as if I am hurting her..... However, she is eating (hand fed) 100% of her meals (all soft foods) - so that is good.....

What answers are there?? Every AD patient is so different, how do you know if what you are doing is right or wrong???

Thanks again,

Doreen

Walking was her way of life, she never drove a car, always walked or took local buses, but, mainly walked - no matter how cold it was outside, snow storms, rain, thunder, heat and humidity she always loved to walk.  

They had to restrain her when the EMT's came to get her to transport her to the hospital, even then, she tried to pitch, hit them etc.

My Mother was never, ever like that.  We were with her for the entire time she was at the crisis center. It went in between the Emergency room bays and the crisis area. But, she was not left alone there.  Between my Sister and I we stayed by her side. So, nothing happened to her while she was there, it was prior to her arriving.

Thank you again

Doreen