final stage of parkinson disease

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dianna heart broken
New Member


Date Joined May 2012
Total Posts : 1
   Posted 5/8/2012 1:50 AM (GMT -6)   
I am new to expressing my feelings especially to strangers. My mother has been diagnosed with PD for 22 years now. She has been able to manage the PD very well on her own with the help of the medications and exercising. It has been this last 1 1/2 years she has started needing assistance in walking started with the walker, then that led to falling alot while using the walker. This past year she has become wheel chair bound and now has to be seat belted into the wheel chair. This past month she has gone down hill extremely fast. She has difficulty swallowing, her speech is very hard to understand,dimentia, very strange uncontrollable facial expressions, sleeps a lot and most of the time she is not able to be awakened, she is skin and bones. Last week she was placed on Hospice and is now in a hospice facility. I am the oldest and have always had to be the rock of the family and the strong one between me and my sibblings. 6 years ago myself and my husband moved out of state, I would go back once a month to see my parents and I would call them almost on a daily basis. The guilt on moving away has gotten to me this past month. I keep thinking if I would not have moved away and was still there to take care of her like I use to maybe should would not be in the stage she is in. It KILLS me to see my beautiful mother in this lifeless body and mind. Doctors are telling me she has lasted a lot longer then the typical PD patient and there is nothing any one can do at this stage. I want to ask the doctors about inserting a PEG (feeding tube) to prolong her life and not have to worry knowing she is suffering from choking on food or liquids. I know I am being very selfish wanting her around longer she means the world to us. I pray every day for the GOD to place his power healing hands upon her body and to heal her so we can have our mother back the way she was. I know the time is getting closer that she will soon be in a better place and with no more suffering, but I just can't let her go. I am sorry for sounding so selfish. I am unable to stop crying, I cry when no one is around because I have to be the strong one. My father is also suffering from dimentia, so I am double whammed with 2 FANTASTIC PARENTS with terrible diseases. As I have read the other posts, I have found out there are a lot of others with my mothers same final end symptoms. I with you all the strength to get thru these difficult times seeing your loved one in the body that does not belong to them any longer, this tears at our hearts. Thank you for listening to me.
dianna heart broken

hulahoop
New Member


Date Joined May 2012
Total Posts : 9
   Posted 6/11/2012 7:45 PM (GMT -6)   
I think you should consider reading Time magazine the June 2012 issue, it is tragic what you are going through and I understand being the "strong" one..don't beat yourself up for moving..all this would have happened regardless...let hospice do what hospice does best, give your loved one dignity and peace.

jules81881
New Member


Date Joined Aug 2012
Total Posts : 5
   Posted 10/5/2012 12:49 AM (GMT -6)   
dianna,

it's been a while since your post, but i wanted to write in case you checked back into the forum. how is your mom doing now?

something about your account resonated with me. my mom suffered a sharp decline this summer as well, and i had moved back in with my parents last year to help out with little things (father is the primary caregiver). recently, however, i had to return to my out-of-state residence to deal with work stuff... and i have the same response as you... guilt, lots of crying alone, calling every day and visiting but unable to do much in person. it's hard to know what the appropriate amount to do is.

i'm so sorry to hear your father has dementia as well... it must be so hard. i hope you have caregivers or other family nearby to help with their care. anyway, i just wanted to write in and say i appreciate your post, and to ask how your mom is now.

sphipps
New Member


Date Joined Oct 2012
Total Posts : 1
   Posted 10/15/2012 10:15 PM (GMT -6)   
Hi,

I'm new here too and also not really the type to express my feelings to strangers... but it's time to share my experience with the final stages of Parkinson's.

My mother passed away a few hours ago in a nursing home from advanced Parkinson's. She turned 75 on October 11.

She first started noticing feeling "strange" (dizzy, light headed, etc.) back in the mid 1990's... but the doctors misdiagnosed her condition for several years. She was finally diagnosed with Parkinson's by a neurologist around 2002 after uncontrollable shaking in her right arm became pronounced. She was prescribed medications such as Requip and actually did very well for several years until those drugs eventually became ineffective. Her medication regimen was changed in 2008 and her health became stable again... though not terribly good... until about a year ago.

Late last year her health turned downhill very quickly. She lost her desire for eating which resulted in a 50 lb weight loss over a 6 month period... going from 130 lbs to 80 lbs. She became very weak and frail. I had to admit her to a nursing home after a 17 day hospital stay in June of this year. A feeding tube into her stomach was also inserted. Last week she developed Pneumonia and was in ICU for several days. For a short time while there it looked like she was making a miraculous recovery... but she quickly deteriorated again after returning to the nursing home. She passed away very peacefully this afternoon.

Of course I am very sad tonight... but I am also very thankful she no longer has to suffer.

Her nursing home insurance coverage expired two days ago which would have resulted in a $5k per month care bill... so it's almost like a higher power said "it's time".

My mother had all of the signs of advanced Parkinson's and was a "textbook" example... so to speak. Surprisingly, she never had dementia. On her good days, she would talk your arm off and remember things about the past that I wouldn't be able to remember even on my best days. She was like that several times just last week.

My mother has always wanted her body to be donated to Parkinson's research... and I am going to totally honor her wishes.

I pray for all of the Parkinson's patients and caregivers here. I understand exactly what you're going though. God bless.

Post Edited (sphipps) : 10/15/2012 9:52:43 PM (GMT-6)


Sky1968
New Member


Date Joined Aug 2011
Total Posts : 2
   Posted 10/18/2012 11:48 PM (GMT -6)   
I am so sorry for your loss.

Sisterhood
New Member


Date Joined Jan 2011
Total Posts : 19
   Posted 11/5/2012 10:30 PM (GMT -6)   
I haven't been to this site for a while, but I see that others are going through or have gone through what my family and I went through with my dad. He died Aug. 31st of this year of complications due to PD. He had bi-lateral pneumonia and died of respiratory failure ultimately. He couldn't swallow anymore, and most of the food was going down the trachea as opposed to the esophagus, thus contaminating his lungs and causing pneumonia. He was diagnosed over 25 yrs. ago with PD. He did remarkably well for many years, but his last 2 yrs. were the years where PD caught up to him. We had to put him in a nursing home, as my mother was taking care of him 24/7 and her health was going down-hill. I lived 5 hrs. away by car, and I was traveling to them every 2 weeks or so to help out. I did this for over a year and it took its toll on me too. We finally moved them both down to us - my mother into an apt. and my father to a nearby nursing home. My father died a week after we got him down here by us. He was 95 yrs. old. That was heart-breaking.

There is no right or wrong in how we deal with our ailing family members if your heart is in it. For me, the distance was the biggest obstacle and I too found it difficult to overcome. But I did the best I could considering the circumstances. A year before my father became immobile with the PD, my sister was diagnosed with a brain tumor. She lived near my parents, and I spent most of my time up there by her as I knew she was terminal. I had to leave my own family to fend for themselves on many an occasion, but they worked it out and had to do without me for most of 2 yrs. Somehow we all managed to survive.

I guess I have to say that you should give yourself credit for doing whatever you can to help out your loved ones. Nothing is ever perfect and you just have to do your best. Looking back on my situation for the past 2 yrs., I know I was there for them when I could be there and I have no regrets. I couldn't have changed the distance between us and that was the hardest part, but I did my best. I have to say that I did a lot of praying for strength so that I could endure all the hardship emotionally and physically. I think my prayers were answered - in hindsight I know my dad and my sister knew I was there for them.
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