Monday, June 22, 2009

My Mother's Keeper Part II

I haven’t been able to quit thinking about the conversation I had with the mother of young children, the one I posted about last Tuesday. I think it’s because I’ve just spent lots of time on the phone trying to straighten out some of my mother’s business affairs—I’m her Durable Power of Attorney since she has Alzheimer’s—and at the end of the day, it can be just as trying as teenagers, toddlers and newborns. Only without the joys to be had from those precious teenagers, toddlers and newborns!

(If you’re new to my blog, you can read some of my posts about my experiences with Long-Distance Caregiving, and about being My Mother’s Keeper,and even about Her Mother’s Keeper. And you can read about The Good Daughter, and The Good Daughter Part II.You regular readers can just move along to the next paragraph.)

Please believe that I’m not writing this to complain, but rather to share some of the ins-and-outs of being a full time daughter of a parent with Alzheimer’s. Okay right away I can hear some of ya’ll thinking, “She’s not full-time—her mother doesn’t live with her. In fact, she doesn’t even live in the same city!” And you would be correct on the second two points, but completely wrong on the first one. There is not a day, and some days not an hour, that goes by in which I don’t think/worry about my mother and how she’s doing. And between visits (usually every 2-3 weeks) I’m taking care of her business from home. Sometimes it’s unbelievably complicated. I’ll share a couple of stories.

When I moved Mother into an assisted living home in February of 2006, I spent the next three months cleaning out her house and selling it. (Thank God it was before the current financial recession!) One friend helped me go through everything my parents had collected in their 49 years of marriage. The job pretty much consumed my life for all of spring of 2006. Once we moved her into her assisted living apartment, hung all the pictures on the wall and got her cable TV, telephone, and newspaper subscriptions transferred, she was good to go for a few years. She had made me Durable Power of Attorney and put my name on all her financial accounts while she could still think clearly, which helped tremendously. (I can’t recommend this strongly enough for anyone caring for elderly parents.) I had already been filing Mom’s income taxes for a few years (Dad died in 1998) but when she moved in assisted living I had all her business mail sent to me and I began paying all her bills for her.

Things were actually going along fairly smoothly until last fall when her dementia kicked up a notch and I began to research her options. I could (1) move her “upstairs” to the Alzheimer’s unit at the assisted living home, for over $4000/month with no skilled nursing care; (2) move her to a skilled nursing home in Jackson; or (3) move her to a skilled nursing home in Memphis. The decision was hurried up a bit in October when she fell and broke her hip. Following surgery and rehab at one nursing home/rehab center, it became clear her hip wasn’t healing, so she had a second surgery and more rehab, but this time I made the decision to move her to Lakeland Nursing and Rehab permanently. In Jackson. That was in November. Just six months ago. But in those six months I have:

Moved her 3 times (she moved rooms in the first nursing home)
Changed her cable tv service 3 times
Changed her permanent mailing address 3 times
Cancelled her phone service (she forgot how to use a phone)
Labeled all her clothes with a sharpee pen with her name and room number 3 times
Made about 19 round trips to Jackson for hospital stays, moves, doctor appointments and visits
Changed her monthly draw-down on her Schwab account to cover her increasing expenses and met with financial advisers to learn how to apply for Medicaid when her money runs out
Closed one of her two bank accounts
Changed her Medicare Part D enrollment from Humana to AARP, at the recommendation of the business manager at the nursing home

That last one is one of the “stories” I want to share. We enrolled Mom in Humana three years ago, with me being Durable Power of Attorney, so all the paperwork came to me here in Memphis. No problem. But in January when we decided to change her to AARP, I asked for help from a friend of my father’s in Jackson, because his daughter handles those kinds of things for his business. She got it set up, and after a while (yes, I should have been paying closer attention and I would have caught it sooner) that the statements were being mailed to Mom at the nursing home. I would find them in her trash can or in a stack of greeting cards, often unopened. So, I called the company to asks them to please mail them to me. Turns out they never got my Durable Power of Attorney back in January, so I had to fax it to them, and call them 3 times over the next 10 days to see if they had attached the DPA to her file yet, before they would even talk with me. Finally I was “in” and I asked them to change her mailing address to my address in Memphis. I was told they couldn’t do that because she lived in a different state. After several attempts to talk with a manager, I finally got one, who agreed to put my address as the “secondary” mailing address, which means I would get a copy of all correspondence, but so would Mom. Even when I explained that she has Alzheimer’s and doesn’t remember how to open an envelope, that the aids have to open her cards for her. Of course I said, “ I didn’t have this problem with Humana,” and they said, “Well, this is a policy of Medicare Part D, so Humana should have been following it.” Who makes these rules? Is it expected that everyone will live in the same state as their elderly parents?

And then there’s Comcast Cable. When I got the cable guy to set up Mom’s tv in her room in the second nursing home, he gave us a “deal” of $34.35/month. He didn’t say it was only a promotional offer. But after 2 months the bill went up to $62.65/month, saying the “promotional offer” had ended. Mom barely even watches tv anymore, but I don’t want to take it out of her room just yet because sometimes it’s good company for her. So today I called Comcast. I called the 1-800 number on the bill and when I finally got a human voice, she told me that she could only help me if the television was in Memphis. I said, “But why is this 1-800 number on Mom’s bill, if she lives in Jackson?” Turns out it’s because I live in Memphis, and the bills come to me. So she gave me a 1-877 number to call for Mom’s zip code in Jackson. I’ve tried it several times today and it’s always busy. They’re “open” 24/7, so maybe I’ll try later tonight. But what irony, that living out of state penalizes me with both AARP and Comcast.

I could tell more stories, but I think you get the picture.

Fortunately the folks at her nursing home are great. I get phone calls from nurses and social workers with updates between my visits, and when they hold their regular “care team meetings,” they put me on speaker phone so I can talk with everyone at the meeting—nurse, social worker, dietician, activities director, physical therapist, etc. And when I drive down to visit Mom, I always check in with the nurse and director of social services for the latest updates, or to express any concerns I have. They tell me that people from Mom’s church visit her, as well as other folks. That comforts me. If I move Mom to Memphis, she doesn’t know anyone but me. I’m pretty determined to make this long-distance care giving work.

Do I feel any guilt? Oh, yes. Every time I leave the nursing home I remember how angry I was at my own parents when they put my grandmother in the same nursing home in the mid 1980s. I had no idea what was involved in caring for someone with Alzheimer’s, and I’m sorry it’s too late for me to apologize to Mom for judging her. (That’s Mom with her mom, also at Lakeland Nursing Home—in 1985. Mom was about my age, and her mom was about the age she is now.) She just wouldn’t understand. And I can’t help but imagine myself 20 years down the road needing the same kind of care that Mom is getting now. Would I want my daughter to move me to the town she’s living in so I can see her more often? I hope I’ll feel the same way Mom did when she refused to move to Memphis three years ago—I hope I’ll want my own children to carry on with the lives they are building with their families and careers wherever they live. (I also hope that there will be money left in our social security and retirement accounts to cover the level of care that my husband and/or I might need, that’s a discussion for another day.}

If you’re caring for an elderly parent—locally or long-distance—I’d love to hear your stories. Leave a comment, for me and others. Meanwhile, drink lots of water and stay out of the sun!

3 comments:

Charlotte said...

When my mom had Alzheimer's, the Alzheimer's List from Washington University at St. Louis was an incredibly valuable resource. If you want to check it out, it's here: http://alzheimer.wustl.edu/adrc2/alzheimerlist/ Nobody there would doubt that a long-distance caregiver is a real primary caregiver. Daddy was still alive then, so I wasn't even the primary caregiver, but they understood the difficulties of even the limited role that I had. The people on the list helped with answers to practical questions, information about what to expect next, helpful hints for managing things. Daddy would ask me questions, or would be finding something Mom was doing really tough to manage, and I'd ask the mailing list, and get the information back to him. You may not have time for it, but you might want to check it out, just to have a community of people who really, truly understand what you're going through.

Susan Cushman said...

Thanks so much, Charlotte! I just found a great site with helpful information and posts: http://asourparentsgrowolder.ning.com/.

Sue said...

Though my mom, 89, who lives in a nursing home in town, doesn't have Alzheimer's, she is very forgetful. In her case, it has been a blessing because she forgets about things that used to worry her and lead to major depression. It's still frustrating for her to have to be reminded about what's going on in our lives and yet she is learning to take that in stride and we don't mind telling her again on the next visit. Fortunately, my brother who lives out of town, handles most of her paperwork.