redhatprincess

Member since June 10, 2009.
1 Answers, 1 Comments, 8 Replies

Bio

We've been married 35 years and have two grown children. My husband has Parkinson's and suffers from anxiety disorder. He is completely homebound and has been for nearly a year. We actually qualified for hospice for six months but he "graduated" about a month ago because the quality of care helped to get him stable enough that he no longer qualified under Medicare rules. I am still working full time - both for financial and emotional reasons. I believe we are within months of having to place him in a nursing home. He has begun to fall and I think it is just a matter of time before he can no longer be home alone during the day. We don't have enough money to hire someone to come to the house and will have to apply for Medicaid. In our state, I can keep the house and one car. I sold our second car to my granddaughter several months ago and am trying to pay down all the debt that I can.

I've been through all the stages, trying to do everything perfectly, being angry, sad, depressed and, finally, accepting what I cannot change. My mantra is "it is what it is." I have discussed everything openly with my children and they totally agree that their Dad will have to go to a nursing home. In fact, I think they want him to go sooner rather than later. I pray that he will go quietly in his sleep before we have to do that.

Money is perhaps my biggest worry. If we get Medicaid, I'll lose his monthly retirement income. I will be okay with that as long as I continue working. If I retire now to keep him at home, I will take a large cut in pay which would make things difficult. If he then dies in the next few years, I'll lose his income on top of that and then things would get very hard. So, I am committed to working and putting him in a home close to my office.

He has been my best friend, lover, husband, father of my children for more than half my life but, for a long time now, he is a grown child who looks to me for everything. It is so sad. I reached out to my church, my family, friends and an angel of a psychologist who helps me stay sane. I'm in a women's life group at my church, though I can't go every week. Someone mentioned Red Hats in a post. I joined a group so I'd have women to do things with - no couples thank you! Best thing I've done for me. Many of them have experienced or are experiencing the same struggle and they are a wonderful support group and great fun. It took me a few years to get to the point that I could say "I deserve a life" and went out and got it.

We've done all the things you're told to do - have a power of attorney, advance medical direction, a DNR order, are pre-paying a funeral plan (even with his health problems, if he lives 2 years from date of issue, it will be paid in full with no more payments), bought funeral plots, talked about the kind of funeral he wants. None of it makes the present any easier, but it will certainly make the future less scary.

I understand completely that, if I don't take care of me, I won't be around to take care of him.

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