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Ain't That a Kick in the Kidneys

One Family's Life with Peritoneal Dialysis

Another Sticky Wicket

hypertension-867855_1920For those of you who follow the continuing Singer Saga on Facebook, you know that things didn’t exactly go the way I had hoped at the 2nd home visit. They went fine, it does look like he qualifies for the program, but we have a slight hitch. We were told that I cannot be his paid caregiver because we’re married.

It turns out that there is a rule in Pennsylvania about not paying people to take care of someone that they could profit from upon the patient’s death. I believe it’s supposed to cut down on the number of people trying to off someone who is sick so they can collect insurance. It’s a little scary to think that there were enough people willing to neglect or straight up kill someone they were supposed to love to get money that the state had to make a law/rule to stop them. At this point, Keith is worth more alive than dead, so I don’t really see a bonus to getting rid of him.

business-962354_1920In theory, there are several ways around this particular rule. The spouse part is not written into one of the qualifications for one part of the program – so there is nothing in black and white there saying I can’t do it. There is also the possibility of getting hired by an agency that does home healthcare to work for them for Keith. Then there’s something about Keith technically becoming a business and hiring anyone he wants to work for him (the state requires that someone else handle the “business” side of it and has an organization that does things like taxes and so on). Both of these are possible options, we just don’t have enough information to move forward right now.

The other option is to have someone come in the house and have them take care of him. Someone who would have to be trained to do his dialysis and administer meds – an added expense most companies are not going to want to take on. But, allegedly, I would be able to leave the house and hold a full-time job while someone else takes care of him with the time between the actual caregiving moments billed to “respite” care (personally I’ve never thought of work as a respite, but ok). Neither Keith or I are very fond of this idea, for many reasons, and would really rather not go this route. Keith has said he would rather not do the program at all than have someone come in and look at him all day. Frankly, he’s just not that interesting.

files-1614223_1280As I’ve stated before, without the paid caregiver money we are in deep doo doo. Someone really needs to be around him all the time. So either I have to do it or we have to bring someone in. Either I get paid to take care or Keith or I find a job that lets me do both, and the options that let me do both are limited. I’ve been trying to make doing both turn into enough money to support us for about a year now, but so far it hasn’t worked. I’ve got a few irons in the fire, but I’m a long way from full-time money during the times I’m not working with him. There are down times (like as I’m writing this while he naps), so doing things like freelance writing works best if I’m trying to stay within earshot.

Where do we go from here? I’m still trying to figure it out. There are still options, I just need to figure exactly what they are and how to do them. I’m waiting to hear from the social worker and a few others with suggestions. All of it is theoretical until we hear from the Waiver Program and local services with all the official paperwork, but with everything we’ve been through I find a certain comfort in planning ahead as much as possible.

So we are still in a holding pattern. We’re okay for another month or so after that thing get…complicated. Again. We’re still hopeful, but nervous.

Dialysis Clinic Update 5/11/2017

Inside of a medical office
Today was our monthly meeting with Keith’s Dialysis Team

Today was dialysis clinic day, so it’s update day! Keith’s iron was really low last month, which means we’ve been going every week for infusions. I got my appointment cards out of order and thought that this week was another infusion and not a clinic day…I feel horrible that I didn’t have all of his paperwork with me. The Team was non-plussed about it. They are all familiar with the way things have been going for us, and how on top of things I normally am, so they’ve probably been waiting for me to have a major meltdown. Thankfully, the only thing not going our way was my confusion.

Last month, Keith’s protein and iron had been low. His phosphorus was high. And, the levels that show how well the dialysis is working had only come up slightly.

Today we got good news! His numbers have started moving in the good range! Tomorrow I have to take up the paperwork I didn’t have today, so I should be able to get the numbers from today’s blood tests, but everything points to getting good news there too!  20170307_130353

For those following along at home, Keith won’t qualify for a kidney transplant until his numbers are stable and he gets stronger. We thought we were almost there late last year, but his numbers dropped way off and we went back to the drawing board with finding the right dialysis and medication combinations. We’ve been trying to get his numbers up to the minimum levels for more than four months. Getting all his numbers into the good column is a huge step! Granted, what we saw today was barely in the good, and one of the numbers didn’t come down enough, but it is positive movement so we are counting it as a big win!

Keith’s cognitive abilities have also been improving. When your blood sugar, blood pressure and kidneys are not under control it has a major impact on your ability to concentrate, as well as comprehend and remember things. If the kidneys cannot remove the toxins from the body, it keeps your brain from working right (for those who know Keith well, I’ll let you put your own joke here). He’s remembering a little more, he was able to think through directions and how to get around construction in town which is a big deal. He is far from doing what he did before and being able to take care of everything himself, but being able to have a conversation with him and having him remember what you talked about is very much appreciated by everyone who’s had to repeat themselves over and over. He’s still very much qualified for the paid caregiving program we’re working to be part of. We would be grateful if you continue to pray and send good vibes for the 2nd home visit later this month.hypertension-867855_1920

In other news, I’ve been talking with someone at the clinic about doing some volunteer work with them. The way I look at it, if something we’ve gone through helps someone else, then I’m in. It’s why I started the blog. I can’t say if everything will fall into place (there’s a lot of details that go into working with any kind of medical patients and their families), but I’m hopeful that I’ll be able to help people who are going through an overwhelming amount of information, fear, and anxiety. I’ve been there and would love to support others going through the same thing.

Some other good things have happened recently, like prom, but that will hopefully be part of another update coming in the next few days. For today, I’m just thrilled to let you all know that things are going in the right direction.

Hell in a Handbasket – Trip Delayed

Thank you for the outpouring of support after last week’s post. It was a rough few days with all the anxiety that we were all feeling (for the record, we’ve been very honest with the girls about all of the good and the bad going on). Surprisingly, for us at least, I have some good news to share!

On Tuesday I finally heard from the gentleman who was supposed to have spoken with me about being denied and why. We were denied by the local Area Agency on Aging (AAoA) for their family paid caregiver program because Keith is too young (for ages 60+). Which we knew and why filed paperwork for the state waiver program. From what I’m putting together the AAoA denying us for their program is part of the process. Since I knew we weren’t going to qualify locally so we never expected to hear from them. And surprise, he told me to call the state’s waiver program because they were the ones we had to go through.

I called to check in with them and found out that they had just received all of the paperwork that they needed and it was all being sent through for review. The very nice person on the phone that we were qualified and were approved for the program! I was told that we’d hear back in 5-7 business days to schedule the second home visit. All said and done, we were feeling a little better about things and settled in to wait for the call.

StoneKidToday, just 2 days after I spoke with them, we heard back from the Waiver Program. They wanted to schedule Keith’s 2nd home visit! I was never expecting to hear back from them so soon. So major mark in the good column!

On the downside, the earliest visit we could get was May 22nd. I’m ready to go next week, but we’ll take what we can get. I suppose we can patient a little while longer. The program remains a bit of an enigma to me but I’ll post about it when I finally figure it out.

To recap….we may still end-up in southward heading handbasket, but the trip has been delayed.

Hell in a Handbasket

We have arrived! In hell via handbasket. I should really know better than to believe that things are going to work out for us. To think that we may actually get through all this. Every time I do something happens and we are worse off than we were before.

I received an email from the social worker at the kidney clinic that she was told that Keith does not qualify for a paid family caregiver. He does qualify for someone from outside the house to do visits. And, it was discussed with us. Well considering the panic I’m in I think I would remember having that conversation! So, I called and confirmed that he is qualified to have someone to come in and help him a bath and change his clothes. He is NOT qualified for someone to come in and take care of him medically and do things like his dialysis.

Without me as paid caregiver, I honestly don’t know what we’ll do. Keith needs pretty much 24-hour care. Unless they plan on moving someone in with us, I’m not sure what good they think someone stopping by a couple of times a week would do. It still leaves me needing to be here when someone else isn’t here…which would make working a full-time job difficult…which is why we’re trying to get the paid caregiver thing in the first place! Of course the person who made the decision and can explain it is out of the office until Monday. Which gives me about 4 days to panic about it.

cryinganglequarterAnd then I found out that the college Kayleigh wants to attend has improved her financial aid package…but we’re still on the hook for more than $15,000 a year. I am crushed. I don’t know what we’re going to do. I’m working a few freelance gigs and taking care of Keith, which apparently I don’t need to be paid for, and he’s on Social Security Disability. Do you think anyone on the planet is going to give us a loan like that to pay for school?

I don’t know what to do. Normally, I have Plan B in my pocket (sometimes C, D, & E too). Today I have nothing. I always knew that both of these things were possible, but I thought if they happened I would have options. Right now it looks like we are fresh out.

We can afford to stay where we are until schools out. Then I’m not sure what we do. I wish I was joking when I ask if anyone knows if they still let you park in WalMart overnight if you have nowhere else to go.

mary-pickford-1963155_1280I realize that I’m panicking right now. I need to calm down and think. But damn it…why does this keep happening? I have tried to be a good person my whole life. I’ve tried to do my best to help others, be kind, be honest. Look where it’s gotten us – neck deep in crap creek. People keep telling me to have faith and that things will work out. But you all should see the pattern by now – things don’t work out for us. We get glimmers of hope and then we get screwed again.

I’m sorry if this seems rude, or whiny or something. I’m just frustrated that we cannot get out of this unending cycle of hell we’ve been going through. Everyone has a breaking point, and I believe we have found mine.

Now I have to go figure out how to look my daughter in the eye when she gets home from college and crush her dreams. Again.

5 Things I Learned from My Husband’s PD

It occurred to me that I’ve learned a lot over the last 11 months or so since our family started down this crazy kidney failure road. I thought I would share a few of those things today.

  1. 20170424_124550Get a good hand cream! – I have to wash my hands with strong anti-bacterial soap everytime I hook and unhook Keith from his dialysis. At the moment that’s an additional 6 times washing my hands that I wouldn’t normally do. With a stronger soap than I would normally use because I have sensitive skin that tends to dry out no matter what soap I use. To say my hands have been kind of a mess is an understatement. We bought Keith Gold Bond Diabetic Moisturizer a while back for his dry skin, but I use it more than he does. I try to use it every time I wash my hands but it’s hard when you have to take care of the dialysis first and a million things pop-up while you’re in the middle of it. Regardless, this stuff is great! Highly recommend!(Please note: we know no one associated with making or selling Gold Bond, and will not be receiving any benefit from mentioning it on the blog – we just love it! But, if someone who makes or sells it sees this and wants to send us samples…well we wouldn’t turn them down.)
  2. 20170424_124641Anti-bacterial wipes are a must! Things happen. Accidents befall us all. When it happens with exchanged dialysis fluid it is a little more…well gross frankly. I’d be happy to explain in depth on what exactly I mean by that, but I really don’t think most of you want to know. I kind of wish I didn’t know. Anyway, we have procedures for handling the bags of fluid so to cut down on the potential number of oopsies that can happen. But clamps start to wear out and can open when they’re bumped. Sometimes gravity works for you, sometimes it makes you its bitch. Accidents happen, so anti-bacterial wipes come to the rescue to clean the floor or any other hard surface. They’re also great for wiping down everything his equipment comes in contact with. I’m sure most of you parents out there know how awesome the things are already. My advice, use brand names like Clorox (our wipe of choice, and again no one is giving me anything to say this) – the generic ones tend to dry out fast and rip more. Your mileage may vary.Note: If you use anti-bacterial wipes a lot, see Lesson 1. Don’t forget the hand cream! Those wipes are great for all kinds of things, but they are not kind to your hands.
  3. 20170424_124812Invest in paper towels – Being as germ-free as possible when we do his exchanges is a big deal for us. When we wash our hands we have to use either a clean towel or a paper towel. Since my days are pretty full already (please look-up the word understatement in your favorite dictionary) I don’t really have time to wash towels every day. Paper towels to the rescue! We use them for treating his catheter site and at least a dozen other things every day to help care for him. We now buy paper towels by the case, and usually, go through those in about a month (thanks, Aunt Linda for keeping us stocked on your trips Sam’s). Again, I’m one for a bargain, but I’ve learned the hard way that Bounty Select a Size work the best. I honestly use two to three times the number of generic ones as I do the Bounty, which ends up costing more.Note: I’m sure there are folks out there who are appalled by the idea of using that many paper towels when a hand towel will work. I’ve chosen paper for several reasons other than ease of use. The amount of money we would spend on water and electricity to wash towels every, or every other day, adds up fast. When you’re talking about the exchange solution you’re talking about bacteria and germs, so everything would need to be washed in really hot water with VERY strong detergent similar to what would be used as a hospital. It’s just not practical for us. I do think about the number we go through and someday when we’re in a better place and can afford to do things, we’ll plant some trees or make a donation to help the environment. Sadly, today is not that day.
  4. 52.586.1(9)Forget pride – I don’t think of myself as being very proud. Those who really know me, know that I’m really pretty self-conscious. But it’s a whole nother world walking into Christian Charities to ask them for help paying your water bill. Or going to the Welfare Office for your interview for food stamps. They all say the same thing – this is why they’re there, to help people when things go horribly wrong. But it doesn’t make it any easier. At some point, I’d like to do a whole post on the whole Public Assistance experience as I see things before I got in it and now that I’m here. Frankly, I’m not in the right frame of mind for that yet. It’s humiliating not being able to take care of your kids when you’ve worked hard your whole life and tried to be a good person, to always do the right thing. Sometimes doing the right thing means swallowing what little pride you have left and calling every charity in town for help. Or agreeing to a GoFundMe account.It takes other forms too. Like holding your husband up while he pukes on his way into the doctors. Sometimes it is cleaning up or doing things that kind of disgusts you. But you have to do it. You just push through.
  5. Boggle dice spelling L O LYou’ve got to laugh – You know the old adage, you have to laugh or you’ll cry. Well, that has become our motto. There are so many things beyond your control. The weight of his illness and the lack of money is enough to make me want to cry on a daily basis. But I chose to laugh. Only we, and I’ve pretty much confirmed this from other people, can have the same people lose our paperwork repeatedly. We have become the very definition of Murphy’s Law. And yes, we get angry and we get frustrated and we sometimes feel the world is out to get us. But at this point, it has become a bit of a game to figure out what goes wrong next.We laugh because we would lose our minds if we didn’t. We push on because there is no alternative. We don’t give up, though we may want to sometimes because we can’t. We’re from strong Western Pennsylvania stock, and we keep going no matter what.

Girl’s Night Out

It’s probably no surprise that I don’t get out much. I spend most of my time taking care of Keith and doing the Red Tape Tango. I go to doctor appointments. I go to the school to pick up the kids or take them somewhere. I go to the grocery store, usually with one of the girls. I meet a friend for a cup of tea, but that’s maybe every six weeks or so. Then, once in a very great while, I get to go do something fun that doesn’t involve husband, daughters or caregiving.

Last night I got the opportunity to attend 11th annual Taunia Oechslin Girls Night Out in Johnstown, PA. The event, benefitting the Taunia Oechslin Girls Night Out Foundation, was started by Tunia Oechslin while she was fighting breast cancer and was continued by friends and family after she lost her battle. The money raised stays in the community to help those impacted by breast cancer as well as the Joyce Murtha Breast Care Center. This amazing evening celebrates cancers fighters, remembers those who passed, and gives attendees to enjoy an evening with friends old and new. I had a truly wonderful time.

Woman in black dress and hills hooking up her husband for Peritoneal Dialysis
This dialysis exchange was more formal than usual. Photo by Rebecca.

Of course, before I could go, I had to do Keith’s late afternoon dialysis exchange. I was all ready to go and got him hooked up wearing my dress and heels. Caregiving doesn’t stop when you’ve got a night out with a friend.

A night out with a friend also doesn’t stop a caregiver from feeling guilty about going out. It doesn’t matter how much you need time away to relax, or how much planning you do to make sure that there is someone there to fill in if needed, you still feel guilty. And usually, spend a large part of the night checking your phone for messages and checking in on a regular basis.

Logically I know that I shouldn’t feel guilty. I’m allowed to have time to myself to do something other buy milk or pay the water bill. But, that doesn’t stop the feeling. It doesn’t stop the voice in the back of my mind telling me I need to get back as soon as possible, that I need to make sure he’s awake if I’m running late and see if he’s going to be able to handle taking care of the exchange himself – it rarely happens but I do it on occasion so that he’s forced to do it and ensuring that he remembers how.

Two women at an event
Thanks Heather for inviting me to go with you! I had a great time!

I know it’s good to go out and talk with people. And I really did have an amazing time. It was the first time in a long time that I wore something other than slippers or tennis shoes (and my feet are paying it for me today). It was nice to get dressed up. I totally admit that I had a bit of an anxiety trying to get ready for a whole host of reasons, not just leaving for the evening.

So, if you are a caregiver and you git hit with guilt every time you leave the house to do something by yourself, I feel your pain. It’s hard for someone who isn’t in this kind of position to really understand. I’ve read some very interesting articles and posts about caregiver guilt, which can range from feeling bad about going out to feeling guilty about being healthier than the person they’re caring for. I strongly encourage anyone who is a caregiver to go out and read some articles, do some research, and recognize everything you’re feeling. It won’t make it go away, but it does help when you shut the door and have trouble walking away from the house to know that it’s okay to feel whatever you’re feeling and that you’re allowed go.

I’m sure this is a topic I’ll come back to again. It’s important to discuss these feelings and recognize that you have needs beyond taking care of someone. I would love to hear from all the caregivers out there about their experiences – you can leave a comment below or through the contact page. Caregivers need to look out for each other, so please share your thoughts. And remember, you are not alone.

Two women outside an event.
Caught up with Sherry – a friend & former coworker!

With all the serious business out of the way, back to the swanky party news! There were great door prizes and giveaways. A silent auction, a live auction and a purse auction you would not believe. They had everything from getaways to some of the latest and most sought after bags for people to bid on for a very worthy cause. It was a night for little black dresses, an adult beverage (or two…or more from the sound of discussion about designated drivers I overheard), and a lot of fun. There were some moving speeches given by Taunia Oechslin’s father, her best friend, a cancer survivor, and a local doctor helping women in our community with their fight against cancer. We learned a little about what the DNA testing is for, what it means, and how it can help women at risk be more proactive with their health care.

I had a great dinner, talked with some friends, and yes – had one adult beverage (I was driving so one before dinner was the limit). It was great to be out with so many amazing women. It was even better doing it for such a worthy cause. I strongly encourage you to check out the TOGNO website and consider making a donation if you can. The money stays in the Johnstown, PA area – and it makes a huge difference to the people it support. Hundreds of women have received free testing that they wouldn’t have been able to afford otherwise. As someone who lost a good friend to breast cancer after she had won the fight against other kinds, I cannot begin to tell you how important organizations like these are. As someone who has friends kicking cancer’s ass right now – there is no time like the present to get involved.

Brunette woman and a blond woman with a pink boa.
A dear friend and an amazing fighter – Suzette you are one of my heroes!

God bless the team at Taunia Oechslin Girls Night Out Foundation, the medical professionals who’ve dedicated their lives to helping people fight cancer, the caregivers, and the incredible fighters who refuse to give up. You are amazing!

Wordless Wednesday 4/12/2017

Much better weather for this month’s Baxter Delivery!

The Good, The Bad, and the Ugly – March 28, 2017

It’s been an eventful couple of weeks, so I’m back with our second installment of The Good, The Bad, and The Ugly. This episode features surprisingly positive news from Social Security, a neutral from long-term disability, and the ugly of a whole new phase in the “You Too Can Be a Paid to do the Caregiving You’re Already Doing for Your Loved One.”

The Good: We received a phone call saying that Keith has been approved for Social Security social-security-support-cardDisability! Yes Friends, we have a major step forward! For those of you following along on the home version of How Many Ways Can the Singers Get Screwed – The paperwork was submitted in November thanks impart to a group of Advocates the long-term disability company hired to handle things for us. The local office got the paperwork, processed it and then forgot to press send for three months to move the application forward to the next step. A few weeks ago our Advocates made some calls and got the application on the move. We thought we were going to have more paperwork to complete, more paperwork for our doctors to fill out, potentially interviews and of course like more than 60% of people who apply, a denial. Then, of course, more paperwork and eventually a hearing. But somehow, miraculously, we got to the approval skipping the usual Red Tape Tango – again for those playing at home that means you can pass go and collect $200. Well, we don’t actually the $200…it’s the neutral I mentioned and you can read all about it in the Bad section.

glasses-983947_1920In addition to Keith getting his disability, we get additional support. Because we have a child under 16 we are eligible for benefits for both she and I. Kayleigh is also eligible until she graduates from High School. It’s not much, but it does go back to the November filing. It involves a phone application, which we completed, and…more paperwork! I’ll be the adult in charge of the money Rebecca gets, and part of it can be used for room and board. The rest has to go to her expenses for things like clothes, school activities, etc. The same goes for Kayleigh, but in her case, the money will go towards college expenses. The money I get will go towards the bills, but in a perfect world where I become his paid caregiver and we have money coming in, we may be able to go out for dinner once in a while.

This is amazing news. I can’t even begin to explain the amount of relief I’m feeling. They’ll be taking the Medicare payments out of the monthly deposit, so that’s one less bill I have to worry about which is more good news. This is one more step in the process, but things are starting to come together…FINALLY!

The Bad: Or as I’m referring to it this week, the neutral. When Keith started getting long-term disability it came with the agreement that if and when he got Social Security Disability, we would pay back the overlap, a pretty standard thing in a situation like this. StoneKidWhat it boils down to is that Keith can’t be double paid for the same weeks of disability, so the long-term disability folks have been paying the last few months and Social Security will give us a lump sum for the same months, and we will pay the long-term disability back for those months. Sort of. The amount that they paid is more than what we’ll be getting from SSDI. Plus the government is taking the Medicare payment out. So I’m not sure exactly what, when, or how it’s going to work out until we get….that’s right, the paperwork. What it means in the immediate future is we’re going to get a lump sum of a few thousand dollars that we can’t touch.

We don’t know if the money for dependent support will need to go back or not. It doesn’t sound like it, but I won’t know for sure until that paperwork comes in, goes out and the final paperwork comes back. I’ll hopefully get a little bit better idea after our rep from long-term disability returns my call. It’ll all be theoretical until the reports come, but I’ll be a lot less anxious once I get a few questions answered.

The Ugly: paperfoldedI’ve mentioned a few times that we’re trying to get me made Keith’s paid caregiver. The reasons are basically I whole post on its own. But, in a nutshell, I’m taking care of Keith full-time and trying to work as I can on my freelance projects. If I was working full-time, I would need someone here at the house during the hours I was gone to do his dialysis, manage his meds, take him to doctor appointment, and so on. Which means I would need to be earning enough to pay someone and support the family, not easy to do. There are community-based services out there that will help pay for caregivers, including family members who are doing services that would be the equivalent of someone being in a skilled care facility. That’s where I come in.
To reach this step, we had to get the Medicare in place (which as you may remember took months longer because they “lost” his paperwork). With that finally taken care of, the social worker at our dialysis center faxed the appropriate form to the proper people. Or who we thought were the appropriate people. Since Keith isn’t over 60, they weren’t the right people but gave her the information for who was. So she sent the form to them and called the other organization who manages the program for the state. In the meantime, I called the first agency and was told that they didn’t have Keith’s name anywhere, never heard of him, and gave me the name and number of the second place. When I called them THEY never heard of Keith either. Which is strange because the social worker had them start an application for him. His name should have popped up as having started the process. So…not so awesome.office-1209640_1920

Regardless, I got the full applications booklet to fill out yesterday. Yes, booklet. It’s multiple pages that have all kinds of questions that need to be answered by us and by the doctor. Thankfully our social worker has come to the rescue again and said if I come up later in the week when she’s in the office she’ll help over her lunch break. We’ll have all the relevant medical people there so it makes sense.

The good news is that there are pretty hard timelines for this process. When A) happens B) has to happen within 30 days, when B) happens C) has to happen within 30 days….with the whole process happening in 60 to 90 days. If it takes more than 90 days we are allowed to ask for a hearing with an immediate decision. Yes, it could be another 90 days until we get an answer, but we will get an answer within a specific period of time.

So here’s to the Red Tape Tango and the light at the end of the tunnel.

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