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Topic New to Forum, Mom in end stage Go to previous topic Go to next topic Go to higher level

By CathyM On 2011.07.28 21:29
I've been desperate to find info on the internet to help comfort my dad. My mother was diagnosed with Parkinson's D about 7 1/2 years ago, but we now know she had earlier unrecognized symptoms.

For about the past four years, each time Mother has had a rough spell, Dad calls all the family and extended family and tells them she is about to die. Then they call me and find out the real scoop. It's just wearying. I'm the one who works from my home, so I'm most available to help. I've become the mother in the family. And that's okay. We also have the rare privilege of caring for my in-laws in their 90s. No one I know has all four parents in stages of decline. However, because of my faith I am content. This is where I am supposed to be right now.

Mother's been on hospice care for over four years. Bedridden with severe rigidity for five. Because of needing constant 24 hour care, we placed her in a nursing home three years and eight months ago. She now weighs only 65 pounds (5' 10" in prime and weighed 144 at heaviest). Even at the weight of 75 pounds this winter she fought off a cold without antibiotics, and with her excellent nursing care a large pressure wound at the base of her spine healed). The human body design can withstand so much disease-abuse and still keep going.

My dad is almost 83 and with it, an intelligent man, but no matter what the hospice nurse tells him or we tell him, he thinks the low weight will kill her. Mother had declined mentally and couldn't stand by the time she was diagnosed with PD. The family has all decided to "allow natural death." She doesn't know any of us, and her words are not intelligible, and she has no quality of life, and only rarely interacts with any of us. Although she does still smile sweetly at times and then the stare returns.

I've read many of your posts about your journeys. May God bless all of you. Thank you for this forum, just reading your entries about your struggles, questions, doubts, and not having answers has given me strength.

By caregivermary On 2011.07.29 10:06
Cathy

Welcome to the forum. I agree-it is comforting to find this forum.
Thank you for sharing your personal story. I am in somewhat disbelief after reading it. I personally do not understand how a person can get to 65 pounds and still survive.To "allow natural death"- do you mean just allowing her systems to shut down on their own? Your Dad sounds like a very strong person. How is his health?

Thank you for your kind words for all of us on this journey. Please continue to share your experiences with us. I am definitely one who needs it.

By CathyM On 2011.08.02 19:45
Thank you for responding. I meet with mother's hospice team tomorrow. She perked up and at a bit more this week, so I'm wondering how this will affect her weight.

Caregiver Mary, yes, our family has decided that mom is not to be given any antibiotics or no life saving measures. We know it's the right thing for our family and we know our mother's wishes since she conveyed those to us earlier in life.

Theone thing that seemed to comfort my mother over the past few years were pieces of sewing fabric, quilt quarters. She used to love to sew. When she lost her ability to watch TV, or converse, it made me so sad to see her just lie there in bed picking at the sheets. I know this is a trait of this disease. About two years ago, I bought a basket and filled it with bright swatches of fabric. She fiddled with it, folded it, spread it out on the bed. It seemed to be the only thing she was still interested in in life. When pieces got dirty, I took them home washed, ironed them and brought them back to her. At Christmas she got holiday fabrics, and I changed them out with the seasons. Just thought that might help someone else if their female PD patient loved to sew.

I'm a religion columnist with Houston Community Newspapers, and I wrote about this gift to Mother in a column in December 2009. Here's the link if anyone wants to read it http://stainedglasspickup.blogspot.com/2009/12/right-gift.html#comments

By Mary On 2011.08.04 16:41
CathyM, it sounds like your mother is in the natural process of dying. My experience is they slowly stop eating and then drinking and lose an extreme amount of weight and pass away. It is my understanding without proper nutrition our organs shut down. I am sorry. I watched my Dad pass this way. It is heart breaking. I laid in bed with him while he took his last breath. I cry for us both. Hugs and blessing to you, Mary

By jockdoc On 2011.08.06 11:42
Dear CathyM, Sounds so much like what my Barb and I went through. Thank God for Hospice. You and Hospice can handle your father. It will be tough but with God's help you will prevail.
I ask the Dr. how will this all end, and he said the PD will stop eating and drinking first. Then there will be a "Cascade of Events," which means the vital signs (temp, respirations,and pulse) will start easing away. At that point just follow what you see and hear. Hospice will be very helpful at this point. Lean on them, they are strong. God by His own hand will wipe away every tear.
Remember God loves His caregivers. Jock Doc

By caregivermary On 2011.08.06 18:19
Jocdoc,

Thank you for sharing this information. Reading your description helps me.

By parkinit On 2011.08.13 17:57
This process can occur slowly or quickly. My dad passed away with cancer in February, and he was still getting up (with assistance) to use the toilet 2-3 days before he passed. He was still arguing with us to help him get up to go to the bathroom the day before he died. He always - even to the end - wanted to keep his dignity. He had 2 days of some very difficult breathing, lots of pain meds, and then he took a deep breath - and passed on to a better place. That will always give me comfort. That and his visit in a dream a few months later - he was happy, smiling and welcoming me with open arms. :)


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