Wednesday, August 18, 2010

Praise the Lord! The "Social Worker" has landed.

Because I was 45 when WB was diagnosed is my excuse for knowing so little about Medicare, The Donut Hole, Unemployment Compensation, etc. as I am convinced now that I would have been better prepared had we not been thrown into this quagmire overnight. 

It was our company accountant who finally said, "hey, have you filed for your unemployment?" She posed this question knowing that I had worked full-time without lapse since the age of 16, and had paid in to all the right agencies per the law. 

Because WB was 61 at the time, we filed for him Social Security Disability, instead of just early Social Security retirement benefits. This came in a record 51 days and I have since learned  that was probably a record and doesn't happen quite that fast unless you are blind or have Lou Gehrig's Disease.

Then, for the next two years, he was in the Medicare Gap since he was not of legal retirement age. That means, two years before Medicare picks up part of his medical coverage. That put him into what is commonly referred to as the Donut Hole. 

I envision folks studying this, as I believe I would have, to find the best Medicare supplements for Dr. visits and medicines, but I did nothing of the sort. Didn't know I needed to and that is not like me. Typically, I study everything to a fault. Lots of things would have been beneficial had I known and there is nobody out there to show you the ropes. So, I paid from our retirement hefty monthly health insurance premiums and large sums every month for the medicines not covered. By the way, Alzheimer's medicines are expensive. 

We were 14-months into this when I learned that there are pharmaceutical companies who will sponsor patients through State agencies to get you the medicines and then other opportunities for health insurance, not quite so expensive, for people in this situation (WB on SSDI with a wife as caregiver and a minor in the home).  

So, during WB's hospital stay last month, I was enlighten by his head nurse. She shared with me her own father's bout with Alzheimer's and what her mother and family went through. She literally began mapping it out.

She went on to say that I first needed a referral from his Dr. to get a Home Health Psych Nurse coming to visit. Then, I needed to request from her a Social Worker and an Occupational Therapist. I had always thought that Home Health Nurse meant Hospice care. No so! 

You would think that the medical profession and the government sponsored agencies like Medicare would want a patient at home for as long as possible to decrease the expense of long-term assisted living, skilled nursing or nursing home care. I am finding that this subject matter may create great debate. WB is not ready for skilled nursing or a nursing home. Or, I am not ready for this. Regardless, when the Psyche Nurse said last week, in the mixed company of the family and pets, "Let's start looking for some Adult Day Care" I thought WB was going to strangle her ~ I gasped for breath and the dogs went wild. (Which is why I posted the comment about the Psyche Nurse needing a Psyche Nurse)

Preface this by saying that unless you have exhausted all of your retirement, savings, property, etc. you may not need to read on. For those who were able to hold on, you may be looking at roughly $6500 per month in assisted living care per person. WHOA. Hopefully, you would have had some kind of long term care policy in the bag as well. If you don't, perhaps now would be a good time to look into that. Then, to qualify for State assisted Medicaid, the look-back period is 5 years. You just turn over your house, insurance, whatever you've got and they will give you what' is left after your loved one passes. 

Yesterday, when our Social Worker came to visit, the angels parted the heavens and I began to see the light. Of course, I cried most of the way through it. The thought of trying to find a way to explain to WB that he needed to start going to a place at least a couple of days a week frightens me. I now refer to it as "Socialization and Communications Group Therapy". That is completely made up. There is no such animal or place, but it sounds so much better to me than 'Adult Day Care'.

Our new Angel/Social Worker will be screening places around town that present the right environment for WB to visit during the day. I have promised to go and stay with him to make sure he likes it. The environment we are looking for would be retirees around his age, perhaps some suffering from the same symptoms. He desperately needs to interact with others in the same condition at about the same stage. A place where he can have coffee, participate in activities, make new friends, and socialize with others would be such a blessing. Finding this may be a challenge, but doing this on my own could take months and months. Our Angel is doing this as we speak. 

Remember, the dynamics for Early Onset care and the caregiver experience are different than late onset. Late onset normally does not include the abrupt end to a career, a younger spouse and children in the home. 

She really is WB's social worker. But she is definitely my person.

The "receiving guests" program is really going well. Today, WB's niece Natalie will be visiting with her new baby, Foster. I hope Miranda and Eden will also stop by. Natalie and Miranda are the daughters of Bill's younger brother, Jimbo, may he rest in peace. We lost Jimbo to cancer several years ago. It was a blow to everyone and WB has never gotten over it, speaks of him often and misses him desperately.

RIP Uncle Bo

Just learned last night that WB's mama (Nanny) has landed in rehab after a hospital stay. It seems she had either another stroke or a Parkinson's related seizure. I tempered my reporting of this as the family knows that Bill cannot accept information like this head on. Generally, I get the message and dole it out to him as I think he can take it. Yesterday was not the day. Today perhaps, we will see.

Katie Bug and Nanny at brother Wade's wedding

Readership is up to nearly 600 visits. I am honored to know the depth of understanding, grateful for our friends and family and their participation, increasingly aware of those out there using my fodder to spread the word. This is my therapy and I encourage anyone reading to comment back with ideas, resources, books, etc. as we continue to weed through the plaques and tangles.

Keywords: Social Worker + Alzheimer's Dementia,
My name is Rhonda Brantley. My husband, Billy Ray Brantley, has Early Onset Alzheimer's Dementia and I am his caregiver.

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