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Dealing with Dementia-----My Story (page 2)
Mother and daughter together we stand
I will always be here to hold your hand
September 2000 Mom went into the hospital again.  I brought her in because her lower abdomen was distended and her wounds needed to be debrided.  The wounds are now stage 4 decubitus ulcers (bedsores)which I will try to explain....

There are 5 stages to decubitus ulcers....
Stage 1-- unbroken, superficial redding of the skin.  Disappears when pressure is relieved
Stage 2--skin may now be broken and is no longer superficial.  Layer of skin is now injured and is a wound.
Stage 3--wound is deep into layers of skin and can become infected easily.
Stage 4--wound is now very deep into layers of skin, muscle, tendons and bones.  Very serious and can cause a life threatening infection.  Surgical removal of necrotic, decayed tissue is required.  Extremely difficult to heal.
Stage 5 is not clinically used anymore but involves skin, muscle, bones and underlying organs.  Surgical removal of decayed, necrotic tissue is necessary.  Extremely difficult if not impossible to heal. 
When in the hospital emergency room they found that her bladder stopped functioning.  They put a foley into her and with in minutes her output of urine was over a quart.  The wounds were looked at and the surgeon said, he would not debride them (surgical removal of necrotic, decayed tissue) unless we went all the way  by bringing a plastic surgeon in to do flaps.  As I understand flaps are taking muscle and skin with healthy blood supply from other areas of the body and attaching them onto the  wounds.  This would require general anesthesia for a long period of time and the internal doctor felt he wouldn't even be able to clear her for surgery.  The  surgeon decided he would have a plastic surgeon take a look at them during her stay at the hospital-just to get his opinion.  In the meantime,  she was admitted into the hospital not only for the wounds but her potassium levels were extremely high.  During her stay they found she was dehydrated and her blood levels had dropped so she needed a blood transfusion.  After discussing how I feed her they also decided it was time for a feeding tube.  She had the surgery for that and all went okay. After some time, she was stable with lab results and  the feeding tube.   Her only problem now was the wounds.  The plastic surgeon saw her and called me to say, he would not advise doing flaps on her but felt they should still be debrided and cleaned up. I told him what the surgeon said about not debriding unless I'm willing to go all the way and the plastic surgeon said he'd talk to him for me.   I spoke to the internal doctor on Tuesday of that week and he was also going to talk to the surgeon.  I heard nothing from any doctors until Friday morning telling me she was being discharged.   My sister and I flipped out.  The social worker called and I refused to let her be discharged since no one taught me how to feed her with the feeding tube and I wasn't told what was going on with the wounds.  The social worker told me to come in and they'd quick show me how to feed her.  I broke down in tears since I was so frustrated with them all.  Of course, the social worker thought I was just  overwhelmed with everything but that was not the case-- all I wanted was training with the feeding tube and information about the wounds.  They decided to keep Mom until Monday so I'd get training over the weekend.  Needless to say, they showed me once on Friday because  over the weekend everyone was just to busy to train me.  Monday morning came and they called to see if I'd put Mom in a facility since I may be overwhelmed.  I said,  I'm not overwhelmed just uninformed.  I went into the hospital and asked them to let me at least try my hand at the feeding tube before sending her home which I did.  I asked the internal doctors opinion on her being home or in a facility and he agreed that she could come home with me.  I then asked what ever happened to the decision on debriding the wounds and they all decided it would not be beneficial to her.  Basically, they are telling me to take her home and keep her comfortable since there is nothing they can do.  Well, Mom came home Monday night and the home care nurse came in Tuesday morning.  She was in shock that the hospital sent my mother home with minimal supplies and that they sent her home with the wounds the way they were (necrotic, decayed tissue with a terrible odor).   She said, these wounds need to be cleaned up otherwise there is no chance for them to get any better.   She then got on the phone to try to find me the supplies to feed my mother since I was out by that morning.  The hospital told me it was easy to get but the nurse even had trouble finding it.  Finally, she was able to get me a months supply but it would not be delivered till late afternoon so Mom would have to miss a feeding.  After leaving the nurse ordered all the wound care supplies and came back on Wednesday with a supervisor.   Once again the supervisor was shocked at these wounds.  It is now Thursday and the nurse believes the wounds are  infected.   The wounds had an odor in the hospital and looked real bad but I figured they'd never let her go home if they were infected--I guess I was wrong.  I am now waiting on the just house calls doctor to see where we go from here.
Just house calls doctor came in and has been slowly debriding the wounds 2 times a week.  They were on there way to infection but now that the dead tissue has been removed and she's on an antibiotic they seem a little better.    At least now I have some healthy tissue to work with.  It's a slow, long process but I pray that they will at least get smaller.  On Wednesday, Oct. 16 Mom got two sonograms done, one was a breast sonogam and the other was a thyroid sonogam.  The breast sonogram was done to check if there may be any growth because her sister had breast cancer.  We got this done  basically for the benefit of us girls.  My sister and I both had a scare with breast cancer but thank God the biopsies came back benign.  Now my older sister is going through this same scare but we won't know her results for awhile.  We figure it would be better to know if Mom does have any sign of it, so us girl will get checked more often.  The thyroid sonogram, on the other hand had to be done since Mom has a huge lump on the side of her neck.  We are hoping that it was her thyroid and not a growth of any kind but when the test was done the technician said, he did not believe it had anything to do with her thyroid but lets see what the radiologist says.   We will not get results until somtime next week.  As far as the lump in her neck, I believe further testing will need to be done.  It is now 8:30 at night Oct. 21 and the doctor is on his way to see her.   Hopefully, I'll get further updates and know where we stand.   We were supposed to get hospice in the house but now he believes there is no reason for this unless the lump in her neck is a malignancy.   He believes with time and effort the wounds will heal and as long as nothing new comes up she should be okay for now.  So now we just wait and see.
As of October 30, the test results came back and nothing was found.  No other test have been done because suddenly her doctor started canceling  appointments and we could not get in touch with him.  When the nurse heard this she was very upset and decided to call hospice in for an evaluation.   
On Nov. 3 hospice came in and admitted her into the program.  It would all begin on the following Monday but in the meantime, we had 24 hour access to them.  By Friday night, Mom was in alot of pain and we called them.  They went into action immediately.  They could not get in touch with her doctor so they used the hospice doctor and had a pain killer here by 11 pm that night.  Over the weekend Mom developed  a respiratory problem  and a nurse came in Sunday and ordered antibiotics and a fever reducer.  The odd thing is that the lump in her neck also disappeared at this time.  I don't know if it's possible that whatever the lump was, let go and went throughout her system.  By Monday, hospice had a new hospital bed brought in and we set it up in the living room.  I moved her into the living room at around 6pm and both my sisters and I  were here with her.  By 8pm Monday night,  my mother was having difficulty breathing so the three girls surrounded her.  I bent down eye to eye with her and started to sing her "you are my sunshine."  My sisters were rubbing her head and a tear rolled down her cheek.  As I continued to sing she stared straight into my eyes and drifted off to heaven. When I realized  I grab my  stethoscope  and informed my sisters that she was gone.  Hospice came immediately and took care of making arrangements.  It hurts so, so much but I take comfort in knowing that she is no longer in pain and she is finally at rest with my father.  She fought a long, hard battle but now she's at peace.  I will miss her dearly but I have so many wonderful memories that will last forever.
Thank you to all for your prayers through our journey Memorial Page-click on arrow
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Mom,
You will always and forever be my sunshine.  You and I have fought a long, hard journey  the last 5 years and now it's time for you to rest.  Now I begin my journey alone.  You were not only my sunshine but my life.   For the last 5 years all I've known was caring for you and now I must begin my life without  you.  At first, it will be very difficult but within time I hope my life will be brighter.  For I know, you and the rest of my scottishangels will be watching over me and guiding me through.
  
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