Archive for the Dementia Category

So much has happened since I last posted.  My mother, age 89 passed away on January 29th, 2009.  I don’t care what anyone says, she died a painful death. She had a stroke but the good thing was, each decision that needed to be made, was made for us by the natural causes of heading toward death.

First she had the stroke which left her with no speech and the inability to swallow. The Doctors wanted to do a feeding tube but then her white cell count showed an infection.  She developed pneumonia. After the pneumonia, her lung collapsed.  The Doctors wanted to inflate her lung but then the cumidin which they were beginning to take her off of, caused bleeding from her lungs and blood pouring out of her mouth.  I spent several hours sponging the blood out of her mouth so that she wouldn’t choke on her own blood.

When the bleeding stopped, her kidneys began to fail.  At this point her living will clearly stated to allow her to die comfortably, so we had her on morphine every six hours.  The last three days of her life she had 106 fever, she was unconscious, she was in respiratory distress and I told her throughout the nite that it was okay to leave us, that we would take care of dad and that her mother was waiting for her. Though she was being given antibiotics and a cold thermal blanket to try to get her fever down, she continued to deteriorate.

On the last day of her life, all the grandchildren (except for one who was out of the country and except for my father who was at home sick) were in her room to say goodbye to her.  I had been sleeping at the hospital because I did not want her to be alone.  On January 28th at 11:30 p.m. I could see her breathing was deteriorating.  The nurses came in to turn her because of her bed sores and I asked that they leave my mother on her back at a 45 degree angle and requested they administer the morphine.  I found out during my sleeping over at the hospital, that the nurses only gave the morphine if requested and I certainly requested it when I was around.

At 11:45, my mother was given the morphine. I lowered the sidebars and layed down next to her, placing my hand over her heart to feel the beats.  I am hearing impaired and knew I could not hear the breathing and just wanted to hold her and lay my head on her shoulder.  I knew she was leaving and I wanted to be with her.  At 12:20, January 29th, my mothers heart stopped beating, her breathing seized and I waited and I cried.  I called the nurse in who checked her vitals.  My mother was gone.  She lay still, no pain, no awareness.  I couldn’t help but wonder where she was at that very moment in time.

After the burial, the shiva, the condolences, the surreal feeling of not knowing who, what, where and how, I cried.  Six weeks later, my father passed away very peacefully in the hospital.  Prior to his passing he spoke to my mother and reached out for her hand to take him.  On March 16th, she took his hand and they were joined together. My father celebrated his 90th birthday exactly a week before he died.  He was happy and so his death was a shock.

I feel consumed with mixed feelings of relief vs. lost.  I find myself crying in the middle of the day. I find myself crying when I go through the mail and find condolence cards.  I find myself reaching for the phone to call them, realizing, they are not there.  I’ve learned a great deal about death and dying over the past two months and I worry about my children and how I my life will end.  And then, there is life, the living. I want to live so badly and do everything my parents never did and couldn’t do.  I want to live.

Being back at work is not causing me any stress, its watching my 90 year old parents growing old and deteriorating that is difficult to watch.  My father has been totally out of it over the past few days.  He has no idea of the day, the time and he doesn’t believe I am who I say I am…..his daughter.    My mother, blind and very quiet, speaks up when my father becomes verbally abusive.  Sometimes, I just want to laugh that she can put it all together and tell him what’s reality.

 Its so hard to watch them die a little bit each day.  We’ve tried to give them everything they had requested for when they get older but the words sting.  Medications are not always the answer but it makes him zombie like and he still can’t get out of it.  I don’t want to grow old like that.  The worst part of it all, is the fighting between my brother and I.  We can’t seem to be on the same page.  I want a divorce from my siblings.  I want my life back after my parents are gone and I want very little from my brothers at this point.  It feels like a lonely battle uphill but thank god for my girlfriends who keep me in reality with a bottle of wine and food from gino’s.

As I grow nearer to my return to work, I find myself doing things in preparation for it.  I’m almosted surprised at my acceptance to returning.  On the other hand, I just read about Randy Pausch passing away today.  He was 47 and had the most unbelievable positive attitude about life and his impending death of pancreatic cancer.  How do we adapt to having his focus, fortitude, and upbeat attitude about life and our journey?  He’s just unbelievable!  Can’t help but wonder, is he real?  He was truly remarkable.

Take some time out and watch his LAST LECTURE:

http://www.youtube.com/watch?v=ji5_MqicxSo

My mother in law is only 80 years old but over the past two weeks, she’s turned into somewhat of an invalid crouched in her wheelchair, busy in her own world of characters speaking in a language that is half hers and half theirs.   My heart breaks as I think of this woman before the disease ravaged her brain and body.

We may not have always agreed on things with one another but we seemed to have a good understanding of our comparable lives without ever having to say a word. The religion, the family, the animosity.

 She was a meticulous dresser, always coordinated, always looking sharp, always looking like a Queen in her role doing the right thing for her family.  Working long hours in a job that kept her on her feet all day until she returned home and started her night time job as a wife.

Life is not always fair, as I know all too well.  When she was first diagnosed with the Lewy Body disease, I don’t think any of us thought of it as anything more than another word for Alzheimers.  We expected her to forget things, forget where she puts things and maybe in ten years, she would have trouble recognizing us.  But from the time of diagnosis, it seemed to appear that we overlooked alot of little changes in her personality until everything seemed to be moving in fast forward.

In reading the material on this disease, I can now recognize her on the pages.  We who look at her, think she is terribly frightened or lost in her own world but the reality is, she is in a world where she seems to know everyone and they know her.  She feeds them and herself, she sews, she cooks and she socializes in her world.   We, looking in, are frightened by the prospects of losing her to another world that does not feel comforting to us, yet somewhat comforting to her.

There are moments of her being lucid and seems to be with us for a moment or two but her heart takes her back to where her life appears to have settled.  Though I am only a daughter in law, I feel as though I never had a chance to say goodbye.  My heart breaks for her and her family but she is somewhat content and we are somewhat lost and in fear.  We fear we have lost her, we fear we may never again see the woman who was once here.   Yet we also fear that this may be our destination as well.

After five years of watching my mother descend into the belly of dementia, I cannot get use to the behaviors that appear before me.  Her descend has been slow but always noticible, at least to me.

I’ve witnessed her threats, her cursing my life, her paranoia, her screams, her nightmares, her stripping naked, her cries for help and her calling for the police. But none have the effect or rattle me as her calling out for her mother.   She lost her mother well over 65 years ago, but her mind cries out for her mother to help her and comfort her as if her mother were in the next room.

Usually we medicate her to calm her, but she’s in the hospital suffering with pneumonia and cogestive heart failure and they feel she is overmedicated with what we give her at home.  So here I sit, listening to the hell that she lives in, wondering, is this what it all comes to?  Is this going to be my destination at some point in time.  What a cruel and unusual punishment to have handed down to my mother.  Had she not suffered enough before, during and after the camps?  

I’m angry and I don’t know who to be angry with.  I want to kick, spit, scream and cry out to give my mother her sanity back.  I was never very close to her but she is my mother and I would never turn my back on my responsibility as her child.  Afterall, she brought me into this world and for that, I am grateful. 

If my mother can’t be “sane” and enjoy her life, then all I want for her, is to be at peace.  Dementia is eating away at her like vultures and she’s dying a slow death in quicksand.