Wednesday, March 9, 2011


Once again, I find myself having a VERY difficult time while I fight every step of the way EACH AND EVERY DAY for services and assistance for Mike. As empowered as I was last Wednesday when I was up in Albany with Courtney and Brandon, I became even more dishearted the next day when I went to the Fair Hearing at Social Services for Mike.
Bottom line is this: unless you are a millionaire when you or a spouse are diagnosed with a catastrophic disease, there is no one, not even our government that can help. You either have to have everything or nothing - there is no in between. The judge told me that while he may not agree with the rules, he still must follow them.
So here I am, thousands of dollars in debt to our home health agency, no health insurance for Courtney or myself and no where to turn. Apparently my government doesn't care if I lose my job because I decided to keep Mike at home. If I cannot afford the $1,200.00/month they feel I can pay for Mike's aide, then I will need to stay at home and care for Mike myself...which means I will lose my job...which means I will lose my home...which means my entire family will be homeless and on the street. That's EXACTLY what they are telling me.
Something is VERY wrong and it needs to be fixed. I am telling the world my problems, not for sympathy, but for the sole reason to raise awareness. We need to think more carefully when we vote for elected officials. We cannot assume that our government (no matter what state you reside) will be there for us when we need help. What hurts me the most is that I am saving New York State thousands and thousands of dollars a year by keeping Mike at home and out of a nursing home, yet they DO NOT CARE. Times my thousands and thousands by all the other families caring for sick loved ones at home and that's a s*%t load of money. Now times that by families in other states....shouldn't we be elligible for some kind of assistance, if by the off chance we are not millionaires????
I'm not even getting into the fact that my children have worked their butts off in high school and college to keep up their grades, despite all their hardships, sacrifices and losses...yet they are only eligible for minimal government grants. What kind of message does this send to them? To any child out there who is struggling despite difficult situations at home, who doesn't happen to be a minority.
I am bitter, I am angry and I am scared. I do have some people who are trying to change decisions, but I am not hopeful. And even if those people DO move mountains, what happens to the others out there who don't have connections??? My heart is breaking..for so many reasons.


Anonymous said...

Oh, Karen,

This is precisely why I was advised to file for divorce. If I "abandoned" my sick husband on paper before he became incapacitated, he could access services and I could keep the house, feed the kids, and keep my job. The suffering ran very deep and in many ways still does.

A working able-bodied spouse was a liability to getting help for this devastating illness. It tore me up and sadly he no longer understands why it happened, but we agreed at the time. I am so sorry for all of it & for all of us. There are so many problems in the system I could write all night.

You and your family are never far from my thoughts. Rhonda

Kathy Knowles said...

I'm so sorry to hear about the decision that was made by the judge. Lawmakers can make changes, and you are advocating to that entity. You are doing what you feel is best for Mike, and you are not being supported. It's shameful, and you have my sympathy and prayers. The previous post about divorcing a spouse so they can get help is a horrible option, and I don't believe I can ever do that.

Forge ahead and know that you are admired and appreciated by many. I'm praying for answers for you.

Anonymous said...


My decision was not a horrible one. And, I would do it again in a minute for the sake of the children we conceived in love. We divorced after a careful decision making process. We loved our children enough to realize we had some decisions to make. Like how to survive. My husband showed symptoms in his 20s.

My husband's dementia manifested in violent behavior and sexual inappropriateness. He tried to hurt me many times. I stayed, I stayed for 17 years praying for a miracle and protecting our children.

After consulting the attorney, we realized the miracle was not coming and our children were being harmed emotionally and we all suffer from forms of PTSD.

We each have our own choices to make and I have never judged someone who chooses to stay in a marriage to a spouse with dementia sacrificing their own lives. However, martyrdom is not honorable, you must die for it, and I was not willing to die at the hands of dementia for the sake of being a good wife.

We are all better now, including my children's father. He lives in a very structured environment and is thriving without the pressure of trying to perform everyday as a well-functioning father and spouse. As a result, I am not bankrupt, homeless, and wondering how I will buy groceries any more. I do not come home to the lights having been turned off because I chose to buy Namenda and Aricept to the tune of $500 per month instead of paying the utility bill.

Yes, I am proud of my choice and I still advocate professionally for informal caregivers in many ways. I work for hospice, too. I am not heartless.

I will never be free of the spousal caregiver role. It is burned into my soul.


Kathy Knowles said...

Rhonda, I'm sorry it appeared that I was judging you; I was not. I was commenting on the lack of choices the government gives us when trying to determine what is best for our loved ones. I don't feel anyone should remain in a situation that puts themselves or others in harm. I don't seek martyrdom; I just want to take care of my sick spouse and need help to do that. We are actually on the same side.

trish said...


My heart breaks for you and other spouses in our situation. I'll will be praying for your family this week.


I can't imagine how difficult it would be to have your spouse showing symptoms in his 20's. I've known a few spouses who also divorced to save assets. While I am blessed to have the finances to care for my husband I would never judge others who have/are traveling this road.