jsfantome's Journal, 05 May 2010

I read your journal post and you are right. There are sooo many amazing people here. I was also deeply touched. Glad you got through your low spot. Love ya 

I didnt get to post on your journal yesterday. I lost my dad to alzheimers about 4 years ago. It was so sad to see him slip away from us and become a stranger. My mom is slipping away bit by bit too and I understand your frustration with answering the same questions over and over. We get upset and then we feel the quilt of that. I would get up each morning with the mindset of patience , kindness , tolerance and love and blew it by noon. It really was very stressful and took a toll on me and my husband. My mom is in a home now and she loves it who knew. My time with her now is quality and I know she is well cared for. If she hadn't lost control of her bowels I would still be caring for her. Reading your post and Keli's and others I realized I wasnt alone in my feeling and it did help me to heal. It is hard on you and I know you don't want any regrets later. You are human and I think what upset me most with Dad and Mom was the anger they were and are no longer the way they used to be and I miss that very much and it hurts. You will be alright and I will too, love goes such a long way. :) Thanks again for sharing with us.  

No, No, thank you!! I must say it is a trial I don't wish to see others have to endure...but the long story version of what took place is - well, in a word - depressing! My Dad & Mom were living in the Gulf Shores of Alabama. (retired there from the north). And had been there for about 15 yrs. I am the youngest of 4 kids, and we all would occasionally visit, and bring the grandkids, and my parents would occasionally make trips back North - but my Dad got progessively ill as time went on. He was a 35+ yr diabetic. And it was taking it's toll. Heart problems, insulin dependent, leg weakness, neuropathy, and eventual kidney failure and a dialysis patient. All the while my mom took amazing care of him. Until 2 years ago. My dad was in the hospital for 3 weeks, and then put in a rehab facility to rebuild his strength for walking. They had no idea why he was sick - no definitive tests results - just not doing well at all. The day after he was put in the rehab, my mom called me (1800 miles away mind you) and asked me to come over for coffee. Well, I knew something was wrong. So, I got on a plane that day - and was with my mom in ICU by that evening...she was in congestive heart failure. She needed a valve replacement of an old valve replacement from 15 yrs earlier - and her body was giving in to all of the stress and work load. It took 3 weeks for her to strengthen enough to undergo surgery - all the while in ICU - on a ventilator - and severly medicated. My Dad had to remain at the rehab during this time. Actually finding my dad was a story all by itself...as I had no idea where he was! Anyway - 3 wks later she was transferred to a larger facility and underwent the surgery, successfully. And the day after, my dad was re-admitted to the hospital back from rehab. He was still ill, still no answers, and doing terrible. So, I had one parent at each end of the hospital hallway! Literally. Within a few days they were planning on discharging my mom - but were telling us there was nothing they could do for my dad. He was not a surgical candidate - and his body was overwhelmed with pockets of infection. They could try to drain some - but he would be bedridden and going back to a nursing home. He gave up. And selected to end dialysis and go home w/ hospice. He was not mentally sharp at this point - and I had to get a written court order to allow me to be his medical proxy and issue a power of attorney, etc...mind you I am now there more than a month. This was a nightmare - and little did I know it was just beginning. Both of my parents were due to be discharged together on a Sunday AM. And Saturday night - through the night - my mother coded and died from a blod clot which caused the first stroke. They revived her and brought her back - but initially she was in very serious condition, back in ICU, back on a ventilator - and struggling to survive. (I hate to even say this - but she had a DNR on her file - which they later admitted they didn't see until after all of this) They ended up discharging my dad home w/ hospice on Monday, and he passed on Wednesday. He never saw my mom again, which broke my heart - they had been married 54 yrs. But all of us kids and our spouses and kids (mostly all grown) were all there. Some of us were at the house when he died, and some were at the hospital w/ my mom - as we were taking shifts and turns who would be where ??? It was awful. It took my mom months to recover and she eventually left rehab and was able to return home in Alabama about 3 1/2 months after the stroke. So I had been there at that point going on 5 months...never went home...I just couldn't. Which is why I made the decision to move her here to MA, to live with us. She is now off of oxygen, off of a Bi-Pap machine she used to sleep with, off of all of the lung related stuff, steriods, etc..., and takes just oral med's and is doing pretty good for such a rough road. She had a second stroke a year ago, and a third on Christmas Eve Day '09. she is legally blind, has left side neglect and deficits w/ the left arm/hand, she has the memory issues, and some - not too bad - child like thinking ...not easy to explain...but just very different from her old "normal" personality. Like the common sense stuff is a little missing...and she hates to be corrected ...so I just don't anymore. What do I care really if she tells my kids I took Spanish in High School when i know I took French. It's that way with almost everything said throughout the day...but breathing exercises brings me relief! In through the nose (like you're smelling the flowers, out through the mouth like you're blowing out the candles...works wonders). She needs help getting dressed, showering, bathroom needs, ...although she can get up and move around slowly - she can get her own coffee for example - still comes to the table for meals - and she can still communicate. (which a lot of stroke patients, or head injury patients have their speech centers affected - I am grateful that is not the case for her) - all in all I feel blessed more days than I feel down - but for now - for as long as we can tolerate one another, and I can physically care for her - I will. (She is only 73, so I am praying that is a long time to come.) But with her heart issues, and other stuff - who knows? We have learned to take one day at a time around here. Have to. 'Cause it can - and it does - all change in an instant. Thanks to everyone for listening... 

You are amazing...never sell yourself short. Your mother is blessed to have you as her daughter. 

I just don't know what to say, its all so heartbreaking for you for them for the whole family. You are awesome a truly strong women. You have been through so much being a caregiver and feeling the pain of it all. I cant imagine what you all went through and how difficult it must have been and still is. Its so hard to take care of yourself when careing for a parent who is unable to care for themselves. It doesnt leave much time for you. I found I was always so stressed with our situation that I just wasnt myself. It just becomes so overwhelming but the love you have wont let you quit. I pray your burden lightens and that your mother has many more good years. Don't forget about yourself, take care and God Bless you :) 

Wow, I am sooo sorry. I do not know what else to say, except I will continue to pray for all of your family. You are doing an amazing thing, taking care of your mother. God Bless you, Paula!