My mom suffers from Parkinsons diagnosed in 1994. Her and my dad have been married for 48 years and he is her primary caregiver and POA. 2009 was a very rough year. She was hospitalized twice both times due to dehydration and "hypo" tension blacking out episodes of passing out. She spent 27 days in a hospital and then came staight home. I insisted she go on hospice so that our family could have some in home support from a team of professionals. Her Dr. agreed. They came to live with us as a trial basis. She slowly began to improve. My dad couldn't stand living with us and I had a very hard time adjusting to having them living with us. So I came up with a plan sharing the care for my mom. She would stay with me Tues.-Thurs. and the other days my dad would care for her in his home. This too was a nightmare. The transitions back and forth were full of tension and fighting. I felt as if my dad was pushing me into becomming more and more of a full time caregiver. I insisted could not be her full time caregiver and needed the time for my family (husband and three boys). When she did go home to his house I was sick with worry. I knew the level of care she needed. 24/7 due to her wanting to get up and walk and her risk of falling. She needs complete care for bathing, dressing, feeding, comfort and safety. She fell on Jan. 15th and suffered a brain injury to her skull. She spent two weeks in the hospital and now has been in the nursing home for close to 2 months. They had to put in a peg tube because she was not getting enought nutrition orally. She is now getting close to being sent "home" again. I would like to see her stay in the skilled nursing home since she is getting great care there, rehab, and activities. However, my dad refused to apply for medical (the only way her care would be covered). He wants to bring her home no matter what. I've been told I should back off. It's his decision to make. I also suffer from feeling of guilt that I should have done more over the years to help both of them. My relationship with my dad has crumbled into ruins. It's been five years in the making. I know it has a lot to do with his burnout from caregiving. I could go on and on about how terrible I've acted during this crisis. I do feel guilty that I want to just be the "daughter" and support my mom in the nursing home. I go to see her 6 times per week and stay on average 4 hours each time. I am very angry that my dad at least won't get on medical to qualify for in home support services. They should qualify due to low income, however, they have a rental property that would need to be sold and my dad is dead set that he won't sell it to qualify.
Hi BreeT,
I'm replying as one caregiver to another, not as an expert. I have had good friends with serious illnesses that killed them and I've taken care of my mom and dad for 8 years. My dad passed away in December after fighting lung cancer for a year. They were married for 68 years when my dad died.
One thing I've learned over these years is that I don't control the world -- as much as I'd like to! When one of my friends got sick, he made (in my opinion) some lousy medical decisions with the support of his partner that ultimately cost him his life. At the time, it nearly killed ME because I could see their choices were poor (again, in my opinion) and I couldn't do anything about it.
Since his death and through the death of another friend in a similar situation, I have come to accept that other people may live their lives differently than I would live in their situation and that's their right -- they can make their own choices and/or mistakes and it's not in my power to control. And in a perfect world, I'd say it's not in my power to judge them, but that's still pretty hard for me to do!
So in that spirit, your mom and dad are a couple and have been for many years. They've made the choice to sink or swim together. You're thrown a lifeline to them several times(at a pretty high cost to yourself) and they've chosen to go down together and not let you steer the ship. In that case, I don't think there's much you can do, except to help where you can and wish them well.
I know it's terribly hard when your mom's health is at stake. But you've offered help and basically it's been refused by your dad -- who your mom has chosen to go with. I'd continue to let them know the offer of help stands, but how they choose to live their remaining lives together is their choice. Good luck and keep us posted.
Ann
Such a valuable exchange! it mirrors my own situation, frustrated by a father's poor choices which have adversely impact my mother's health.
I do, however, take issue with: "...They've made the choice to sink or swim together. You're thrown a lifeline to them several times(at a pretty high cost to yourself) and they've chosen to go down together". Her mother is helpless at this time and isn't making any choices. Her father simply controls the situation by default.
I want to reccommend another way you can be "the daughter" and be sure that your parents are being cared for by competent help.
Have you thought about home care by the VNA (Visiting Nurse Association)? They are a non-profit home health agency who have been providing home care according to the doctor's orders and are Medicare/Medicaid certified.
This is the one home health agency that I feel confident in reccommending. Blanche Katz
Yes, we have a VNA in our area, however, it would all be out of pocket. The biggest concern is my mom needs 24/7 care because she is at risk for falling and cannot be left alone. My dad still wants to work part time and is such denial about the level of care she needs.
Hi Bree. I dont understand something. If she has been in the hospital and the nursing home, wasn't that covered under medicare/medicaid? In most cases, there will be someone who will fillout the papers on her behalf for coverage. How were those locations covered and why cant that be extended and applied to outpatient services?
She is not covered by Medical, only through Scan her HMO insurance. The fact she had a peg tube procdure quaified her for up to 90 days of skilled nursing care. The only outpatient service will be one or two follow up home visits to make sure that she is getting nutrition correctly with feedings.
My lifelines haven't been very sincere. I never considered it a long term arrangement. I would have such a hard time living side by side with my dad that I really resented that I would have to interact with him everyday. We lead such totally different lives and I felt like he would come and go as he pleased and I would be the one to do all the caregiving.
Most states have senior protective services similar to child protective services. a call and visit from them should independently fix your situation.
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