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New to Alzheimer's(1)
!mdeniserod
Posted: Thursday, June 2, 2016 11:52 PM
Joined: 6/2/2016
Posts: 2


Today was a hard day.  My father has Alzheimer's.  My mother is primary caregiver.  I've just started to become more involved in helping them both.  My mother and father wanted me not to worry and so even though I live with them, I allowed them their privacy.  Other people would take them to doctor visits...my mom dealt with the doctor's advice...giving out medicine...feeding him, etc.  I was on the perimeter.  I guess I knew one day I'd have to become more involved and it did 1 month ago.

    I must be really stupid because I just didn't realize how bad things had gotten...the not eating...the bowel movement obsession...my mom forgetting to give him medicine...my mom not understanding all that the doctor was telling them.  It finally became overwhelming for her when he was hospitalized 1 month ago.  He said he couldn't swallow and therefore refused to eat.  The diagnosis...he'd suffered a panic attack.  

     So over the past month I've become involved.  I now take them to doctor visits.  I now have tried to help my mom make decisions that she can't seem to make.  She's overwhelmed by everything.  I do have 2 brothers but their helped is in a limited capacity.  

    We're finally getting in home hospice care.  I don't know to what extent they can help but any help is better than none.  

    I've realized that our actions have to be carefully thought out.  Example, my father being obsessed with bowel movements meant he was using enemas to help him.  I, naturally, never knew this until 1 week ago.  Because of his lack of bowel movement one day last week, he gave himself and enema and suppository.  The end result was he was going to the restroom every 15 minutes with diarrhea  and my mother had to deal with this.  It was a difficult day.  

   Truth is I'm angry a lot ...and I also am scared...sad...cry...usually when I'm alone in the care on the road.  

   Why was today a hard day?  Because he hasn't eaten in 2 days and even though we'd just gotten back from a doctor visit...gotten signed up with hospice care...he still refused to eat because he couldn't swallow.  I lost it. I told him I was never going to sit at the dinner table to eat with him again.  That I knew he was going to die soon.  

    How horrible a person am I?  And I didn't just end it there...I told him...HE'd turned me into a MEAN person.  How can a person say that to their dad???  I just did.  Yes...out of sorrow and frustration and fear...but I know I shouldn't have.  I was mean and those are words I can't take back.  I'm a bit lost right now.  Hopefully I can pull myself together.  On top of things, my mother needs a stent put in one of her arteries...so we're trying to figure how to deal with that too.  I read somewhere where you can grieve for years while you're loved still lives with this disease.  I believe it. Lot of sorrow here. 


!mdeniserod
Posted: Thursday, June 2, 2016 11:59 PM
Joined: 6/2/2016
Posts: 2


I forgot to finish my thoughts on how are actions have to be carefully thought out...Because of the enema usage and my father constantly going to the restroom that one day...I saw my mother suffering with having to help him stay clean...and just watching him suffer was difficult for her.  She was lost.  So after that day, I told her to throw away the suppositories and enemas...and this was also doctor's advice.  A week has gone by since that decision and it's been a week of my father refusing to eat....my father having no bowel movements.  And I've seem my father groaning with anxiety about needing that enema.  I've seen my father crying because we threw it away.  And all our talk about how he won't have a bowel movement until he eats doesn't compute with him.  I was the one that would tell my mother NO...don't give it to him.  It's a bad habit.  Meanwhile he's mentally suffering...which is resulting in him completely shutting down on the eating part.  So today, I realized....just let him use it.  If it means he'll eat...it's better for him to use it rather than starve.  How stupid was I to say NO!
Beaver Dams
Posted: Saturday, June 4, 2016 6:48 AM
Joined: 5/15/2013
Posts: 475


You have a really full plate.  Your Mom probably needs help with her caregiving.  You should check in daily---especially when Hospice is not there that day.  Please help your Mom with personally monitoring the medications for your Father.  Please pick up the book "the 36 Hour Day from book store or library and read about caregiving and Alzheimer's.

   Carefully check their abode for any safety hazards---especially in the bath room area.  Was their tax return filed this year and does your Mom need help handling their bills.  Try to set up automatic payment of their bills.  Get your name on their bank accounts.  If you are not used to handling financial affairs, find somebody you can trust and help them

   Please check with both Alzheimer's and Office for the Aging for their input and possible help.

   Offer to drive them and get their groceries.  Check to see if Meals on Wheels could get involved if she needs help with meals.

You should secure Power of Attorney for both parents and medical proxies for both parents.

    Both your parents need help and advocates.  Do all you can and use prayer too.