Till the Bag Breaks

February 26, 2011

I was watching a woman in IKEA the other day, trying to push a very large down comforter into a very small shopping bag. It was a eureka moment. That bag was me! Someone is trying to stuff entirely too much stuff into my life – it just won’t fit – and its making me feel like an old bag. Ok, the last part was a bit much, but the metaphor was just going so well.

I’m running around today preparing for the arrival of my parents tomorrow. I’ve spent most of the week in bed with a migraine (gee, don’t know why...) and I’ve gotten nothing done. This coming week is going to be very full as I take my Mom to doctor’s appointments and we will be celebrating her eighty-ninth birthday on Monday.

Now that...dut, da, da, da!!! .....we have approval from the town to proceed with Lauren’s home ( a moment of thankful silence here), I have to get going on all of her plans. As I mentioned in my last post, my stepdaughter and her husband are going to visiting in six weeks and now, I learned yesterday, my grandson is coming to visit in two weeks. I haven’t seen him in a year and miss him a lot. But six year olds require much energy. I hope there is some still hanging around by then.

Lauren started the day with a seizure this morning. So, she is sleeping on and off. She’s still smiling, though. I wish I had her calm acceptance of whatever life sends her way. Right now, I’m overwhelmed with responsibility, stress, and utter fatigue. I had envisioned the months leading up to Lauren moving into her home to be filled with positive decision making, buying furniture and drapes, and making tons of lists - a flurry of activity leading up to a celebration of a major milestone in all of our lives. Instead, I fear, I will become caregiver to my mother now, and not be able to do all for Lauren that I will need to do. I was sure that the shopping bag that woman in IKEA was using would surely break before it would hold that comforter, but it didn’t. I hope the same is true for me.

New Caregiving Demands

February 22, 2011

We will find out tomorrow, from the town, whether we can proceed with Lauren’s new home. We are understandably anxious with so much riding on the decisions of strangers. After the last few months, I feel in dire need of a week on a beach staring at nothing but an occasional passing sailboat, maybe a pina colada in my hand, and the voice of a handsome island native accompanied by steel drums. Peace, pleasure, and no demands on my mind or body. Heaven.

Instead, life is about to get even more complicated, more demanding than we knew it would probably be this Spring. My mother’s health has deteriorated since I was with her in January. We are bringing her and my father back home from Florida. They will move in with George, Lauren, and I. My mother requires pretty much the same level of care as Lauren. And, she has become very confused, dementia may be beginning. There was nowhere else for them to go. Their home is in Florida. Their children – my brother and I – are in New Jersey. My father can no longer provide all of Mom’s care. My home is accessible. My brother’s isn’t. I have a spare bedroom. He does not. I fear that I don’t have the energy, the patience, to meet all of my mother’s needs. I will definitely need a lot of both.

While we deal with this new stage in my parent’s life, the rest of our life will continue with its own demands. Hopefully, we will be getting Lauren’s home, and her, ready for the next phase in her life, and we will be addressing the new challenges that I’m sure will surface before she moves in. My stepdaughter, who we have not seen in five long years (she lives in England), will be visiting in April. She has some health issues that require an accessible environment. I want to be able to make her comfortable and welcome, but I can’t even think about the logistics of that right now. My parents will need to find a new place to live, permanently, here near my brother and I. What will they be able to afford in New Jersey after so many years living in Florida? Will they even be able to live independently with the help of their family? We still have to convince them, no, really, we need to insist, that they can no longer live in Florida. And, George and I need to prepare our home to be put on the market. We need to paint and polish and, what do they call it?.... “stage” our, already beautiful to us, home. We would like to move soon after Lauren is settled.

I need to quickly become seriously acquainted with services, funding, and resources for the elderly. All these years of learning the disability system is only marginally helpful in making sure that my mother has the care that she needs. There are very few things that overlap between services for the elderly and services for the developmentally disabled. Wouldn’t it just make more sense if they did overlap? I see myself providing my mother with the same type and level of care as my daughter. Aren’t the outcomes we seek the same? Professional, inclusive community-based care in their own home or with family, access to medical care as needed, and opportunities for socialization and activities that provide quality of life.

My parents will arrive this weekend. I’m not sure I’m ready, or would ever be ready to take on yet another person who needs such extensive care. The only thing I am sure of today is that there are no island breezes, no hibiscus-scented evenings in my immediate future. I’ll see what I can do about the pina colada.

House Plans

February 15, 2011

The planning for Lauren’s house is stalled. The reason is unexpected, something, maybe the one thing, that I didn’t fear. There could have been problems with funding, finding caregivers, getting accessible housing, weather, or unforeseen health issues. Instead, we are having a problem with the town building department. We can’t get a building permit.

This has been going on for months. I don’t think I’ve written about it before because I have not been dealing with this well. I’m still not. We are not asking to do anything unusual, illegal, or new. We are not violating any codes or causing a safety issue. What we have run up against is the fallout of the current economy, and its affect on struggling towns and their employees. I won’t be more specific because there could be repercussions. We can find no grounds for what they are doing. The meeting with the town, that will determine Lauren’s future, is next week. Can you believe that with all of the issues surrounding a young woman with developmental disabilities being able to begin an independent adult life, that this is what could ruin her chances?

In the meantime, I feel like I’m in a kind of limbo. I’m afraid to continue with the planning for Lauren’s move. I had wanted to spend these cold winter months accumulating things for Lauren’s first home, nailing down caregiver schedules and duties, buying new towels. But, I don’t feel that I can do that. What if everything falls apart? This should have been the easy part. But instead, we are stuck. We are killing time, waiting, dependent on the actions of people who should not even be part of this emotional, exciting time in Lauren’s life. But we can not wait too long. One of the critical pieces of Lauren’s housing budget is obtaining a state rental assistance voucher. We were prepared for that to take awhile, even a couple of years in this economy. But wonder of wonders, she has gotten a voucher already. She needs to start using it by a specific date. The voucher could be in jeopardy if we cannot proceed on our original timeline.

I try not to think about it too much. I complain about the winter from hell that we’re having. I’ve started playing video games. I’m cleaning the basement. I try to have faith. We are doing the right thing. Lauren needs to take this next step in her life. This feels like the right way to do it, the right time to do it. It's just so important for us to get on with the doing of it.

A New Diaper Supplier

February 8, 2011

I know, you’re saying, “Alright, alright, enough already.” But really, just once more, I promise. I have to talk about the diapers. It just gets better and better. After being dropped without warning by our supplier of two months, I had to find another supplier. After a couple of phone calls I was able to get in touch with a provider. We will need to start all over again with new prescriptions, approvals, etc. The supplier voiced the concern that the authorization with the previous company would need to be cancelled or we would not be able to get approval for the new order. “What do I need to do?”

“Maybe call the doctor.”

Mmmmm, don’t think so. If you’ve dealt with doctors and Medicaid, you know that they’ll never take the time to get involved in this.

“Well, maybe you’d better call Medicaid.”

Ooooo, that sounds like fun.

I called one of the numbers on the back of Lauren’s Medicaid card. It was answered by one of those endearing “press one for this, press two for that” messages. I listened to it all the way through. Nothing related to what I needed to talk about. So, I pressed 0. And....the message started all over again. I picked the number closest to what I needed in the hopes that a human could direct me correctly, only to be met by yet another recorded message directing me to call yet another number. So, I called it. You guessed it, another recording. I selected a number and, lo and behold, a human answered. After I told her what I needed, I got silence. Then I was transferred to another person. I told my story again. More silence. Then I was transferred to another person. She gave me a new phone number to call. Persevering mother that I am, I dialed it. It was answered by.... no, no, wait....a real person....on the first ring! Alanda told me that I really didn’t need to do anything. The coding of the order would show them that there was a new supplier and there wouldn’t be a problem. Without a great deal of confidence in her response, I thanked her and reported her response back to the new supplier.

Now if you’ve been following the diaper saga since last spring, you know we’ve done a lot of waiting. We submitted the first prescription for diapers in April and now in February have only received orders for two months. So, now that we have to start the process all over again, I figured we would once again be waiting, so I went out and laid in a new supply of Depends. While I was speaking to the new supplier she had said something about getting an order right out. But, I concluded that I had misunderstood her while I was busy giving her size, insurance, and delivery info, trying not to forget anything. I was just so happy to be speaking with someone who was trying to be helpful and almost seemed to know what she was doing, that I didn’t question her. She said that when they received approval, they would deliver the first order and after that the diapers would be sent by UPS. That will be a luxury after having to make repeated calls in order to get the two orders that were delivered by the first supplier.

The next morning I received a phone call from a delivery person asking if I was going to be home to sign for a delivery of THE DIAPERS!!! Oh my. Does this mean that we did not have to wait for eight months for our first delivery with the first supplier? Is this further evidence that the first supplier was beyond clueless? All I am sure of is that the process with the new supplier was sooooooo much easier and faster. Hopefully, now I can make good on my promise that you will never hear another word on this subject in the blog again!

Diaper Issues.....Once Again

February 1, 2011

It’s probably beginning to appear that I’m like a dog that won’t let go of a bone with this diaper issue. But I am totally amazed at the time and trouble involved with acquiring this very simple, very necessary product. Once again, I had to call the supplier to inquire about our order which should be delivered once a month. The reply this time – “Oh, as of the first of the year, we’re not carrying diapers anymore.” I asked why I wasn’t told of this earlier. After being put on hold, I was told that I didn’t return their call. .....I never received any calls. Their response was basically, “Oh.”

So, now I’m back at square one. I called the only other medical supply company in the area yesterday, but they are closed on Mondays. It took eight months to get approval through the first company. Am I going to have to start from scratch again? I don’t know.