redhatprincess
Caring for my spouse Member since June 10, 2009It has now been just over 13 months since my dear husband went home to be with the Lord. I am in a much better place spiritually, emotionally, physically, financially, socially...in every way. I have been able to process his death and what that means for me in the future. I have made a decision to retire next year - something I did not think I would be able to do. I am searching for a purpose for the next stage of my life. I am already serving as a volunteer "missionary" through the North American Mission Board and may well do more of that as time permits. I am so grateful for all the help that was offered to me throughout our journey.
My dear husband died on 4/9/2010 and this site was a wonderful source of strength and information for me. I'm leaving my bio for those still in the battle. Hopefully, some little nugget will encourage someone else.
"We've been married 36 years and have two grown children. My husband has Parkinson's Disease, dementia and suffers from anxiety disorder. He is completely homebound and has been for about two years. I am still working full time - both for financial and emotional reasons. His physical condition is fairly stable, but his dementia has progressed to a new level in recent months. He is hallucinating and it is an adventure seeing what he comes up with from day to day. We are trying to keep him at home for as long as possible. We don't have enough money to hire someone to come to the house and will have to apply for Medicaid.
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 and will have to contribute a portion of my income as well. 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 when that time comes.
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 seldom get to go. 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 directive, 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." Well, I was there for him to the very end. In fact, I went out to a play with a friend the night before we took my husband to the emergency room. I can't say it too strongly. If you are a caregiver, you simply MUST take care of yourself. Even with the things I did to take care of my own physical and mental health, it was a long and very difficult journey. I don't regret one thing that I did to take care of this man God gave me for 36 years. It was a labor of love, but it was truly a labor. I'm still deeply into the grieving process a little more than 2 months out and I expect it will take a long time to heal. The hospice we used assigned me a grief counselor and she has been wonderful to me and my family. God bless all of you. "We are not physical beings having a temporary spiritual experience. We are spiritual beings having a temporary physical experience."