The good news is that Keith is finally all approved for the WAIVER Program. Awesome! We got a call from a care provider (before we got a call from the care management people which is a little suspect, but I’m reserving judgment until I get more information). I asked about the possibility of becoming Keith’s paid caregiver and was told that’s not possible in Pennsylvania through this program. She then said that she knows people have gone so far as to get a divorce so that they could care for their spouse.
There are a few other questions I need to be answered, and some more information to collect. But as of right this moment I can have someone we don’t know come in and take care of Keith while I look for a job (which I haven’t stopped doing) or we get a divorce so that I can make $11 an hour (with potential for overtime depending on how many hours he’s been approved for) and paid time-off ….. which I would have to bring a stranger into the home to take care of Keith to be able to use it.
Not to mention that it could mess up his qualification for the program in the first place (it’s household income based so even if we did get a divorce it would still cause problems in qualifying for assistance).
How messed up is it that the only way I can take care of my husband, basically a full-time job, and have an income in the state of Pennsylvania is if he is no longer my husband? All this talk by people about the sanctity of marriage and I’m faced with the very real possibility of having to get a divorce so that I can care for the man I promised to be with in sickness and in health until death us do part.
The money we had from our tax return and long-term disability is quickly running out. As much as I cringe thinking about it, a divorce may be our next desperate option to keep our family together. I’ll update as soon as know more.
As I mentioned in an earlier post, we took the girls away for a couple of days to celebrate our daughter’s graduation and surviving the last year. It was our first overnight trip since Keith started Peritoneal Dialysis (PD). I was a bit of a nervous wreck about it. I’m proud to say all the stress and anxiety was worth it! We had a great time, and I don’t think things could have gone any better from the PD side. If you’re a PD patient or has a family member who is, I would love to hear from you about your experiences.
We chose Hershey, PA because it was far enough away from home to get us away from our day-to-day, but close enough to get home fairly quickly if things went south. We could have saved money by staying somewhere else but decided to stay at Hershey Lodge for several reasons. The two biggest are because we got a great deal and because they had a free shuttle running to and from the park all day. We reasoned that if Keith got over-tired or had a problem I could get him back to the hotel and the girls could stay at the park and enjoy themselves. I’m happy to report that the only time we needed to take the shuttle was over to the park in the morning and returning that evening.
When I booked the package I mentioned that my husband is PD patient and that we would need to do dialysis in the room. This was the first of several times I mentioned. I talked about it the first time when I ensured that we would have a refrigerator in the room. I also asked if there was anything they needed to know in advance to make sure that there wouldn’t be any problems. I believe that it’s better to be safe than sorry – so mentioning it as often as I did would have allowed me to deal with any issues as soon as they came up. And, if there was an issue later I could say, “But I spoke to SO-and-SO.” Maybe it’s overkill, but I like to have as many bases covered as possible.
My biggest fear was forgetting something. I started packing Keith’s PD supplies days ahead of time so I could check and recheck that I had everything. His dialysis team gave us an alternative dialysis schedule for the day at the park so we only had to do two exchanges instead of three, which means I didn’t need to pack as much solution. I used one of larger suitcases (thankfully with wheels) and loaded it with six bags of solution that easily weighed between 20 and 30 pounds – pulling it in a suitcase was much better than trying to carry the boxes into a hotel. That pretty much filled the bag but I was also able to squeeze in the warming pad, BP cuff, thermometer. I also filled a gallon zip lock bag with all of the gloves, masks, caps, band-aids and medical tape we’d need, and a few extra for good measure. His diabetes supplies either went in our little cooler or in the “miscellaneous” bag which held everything from the extra large bottle of hand sanitizer to medicine to sunscreen and of course extra phone chargers (can’t leave home without them).
The drive to Hershey went well, we got caught in traffic in Harrisburg, but everyone did just fine (Kayleigh even drove through tunnels for the first time with no issues). When we got to Hershey Lodge we decided to let the nice guys at the doors help with getting everything out of the car. It took both Kayleigh and me to lift the PD into the car (we packed light and only took one large bag for clothes, but it was packed tight). I figured that the strapping young man standing beside the car could probably do what it Kayleigh and I to do without even breaking a sweat. I was right.
When I checked in I again mentioned that my husband was a dialysis patient. I also told the valet it was the reason I needed to park the car someplace close to our room and where I could get to it in an emergency. Later that night I saw a cleaning guy in the hall and asked for a large garbage bag for my husband’s medical supplies. No one I talked to seemed overly concerned, other than to make sure that we had what we needed.
Once we were in the room I set up to do his afternoon exchange. At home, we have an IV pole to hang the dialysis solution on, but the pole doesn’t travel well. Fortunately, there was a lamp I could use a wire hanger I brought with me to hang the bag from. I used the space on top of the air conditioner for all the other supplies (antibacterial hand gel, gloves, masks, caps, etc.). It wasn’t pretty, but it worked.
One of my big concerns was what would happen when/if housekeeping came in. When we do everything right we can put everything in the regular garbage without any issues. But I could only imagine what someone would think if they came into medical gloves and masks and empty dialysis bags in the garbage. Maybe I’m just paranoid. Just to be safe, I put everything from each exchange into a plastic shopping bag, tied it shut, and put it in a bigger bag (which I tied shut before we checked out). We also put the “Do Not Disturb” sign on the door so they wouldn’t come in while we were in the park. I had visions of someone deciding there was a major bio hazard in the room and it causing …. issues …. so I did what I could to make sure that didn’t happen.
Before the trip, we talked to his PD Care Team about what we should do the day we were in the park. Because they changed his exchanges for that day we could spend the whole day at the park. The compromise with the exchanges was that he had to walk at least part of the time we were at the park. He rode in the motorized cart most of the time but did hike up the ramps to the rides. If you’re traveling with someone who has mobility issues having a motorized cart is a must. I just wish they were less expensive to rent. We’ve talked about buying one (I think we can get one through one of the programs he’s enrolled in), but the issue would be getting it in and out of the car (none of us are really strong enough to get it in and out of the car).
Overall it was a great trip. It also proved that we can go away as a family while Keith is doing PD. Everyone at The Hershey Lodge, Hershey Park, and Chocolate World was great! The young man who helped us get on and off the ride in Chocolate World was awesome – he made sure we were safe and having a great experience. He even made sure that Keith got sugar free treats at the end!
I recommend Hershey to any PD patient and their family for a place to visit!
It’s been an incredible and busy few week for us (hence the lack of weekly posts) and believe it or not, it was all good (don’t worry, we won’t get used to it). There are several topics I’ll be going into more detail on in later posts, but I thought I would share our good news first.
Our oldest daughter, Kayleigh, graduated from high school at the beginning of June! This is huge for anyone, but it is really special for us. We’ve moved a lot over the years so Kayleigh has attended 6 schools over the course of her elementary and high school education. She had her own health scare and spent most of her freshman and sophomore years at home in cyber school. Thankfully we were able put the last couple of years and she graduated with a great group of friends that I know will part of our lives for years to come.
Seeing her graduate was kind of surreal. She was in the front row so we could watch all of the emotions play across her face. She’s said repeatedly that she was more excited about starting college than she was sad was about leaving high school. She has good friends, but she doesn’t have the attachment to high school like a lot of kids do. Sitting in the auditorium I could see when her thoughts drifted to the grandmother she never met and a friend from junior high who left us far too soon as she touched the necklace that once belonged to my mother.
We have so many reasons to be proud of Kayleigh.
Ken Lantzy All-Star Band
Another reason to be proud was Kayleigh’s performance with the 1st Ken Lantzy All-Star Band. I first mentioned the event earlier this year when Kayleigh was notified that she was selected to be part of the honor band. The game was held last week and despite a heavy downpour and flash flooding, was a really great time for everyone. The game was really close and came down to one point with a possible go-ahead touchdown at the goal line with seconds to go.
The band was amazing, especially considering they only had one day of practice. They were to go back over the show before the game but the aforementioned storm forced them inside without having a run through of half-time. Kayleigh had a great time and was featured in a picture accompanying an article about the band in the local newspaper.
A Few Days Away
Thanks to some tax return money and some great folks we were able to get away for a few days. We took the girls to Hershey, PA and stayed at Hershey Lodge for a couple days so that we could go to the park without having to worry too much about Keith’s treatments or getting him over-tired. This was the first time we tried going anywhere overnight since our lives took a dramatic turn last year.
Things went surprisingly smoothly. I’m working on a post now about the experience. We learned a few things and came up with a few clever ideas before we left that other PD patients might find helpful before they hit the road this summer. Look for that soon.
The important part was that we got to take the girls away and celebrate Kayleigh’s graduation and the fact that we’ve made it through the last year. We had the opportunity to be together without having to focus on the day-to-day medical drama that our lives have become. We complained about the weather (it was rainy, windy and cold when we got to the park but the sky cleared by the end of the day), we rode some rides, ate stuff we didn’t normally eat, and basically acted like any other family for the day. It was a pretty special day for all of us.
Now that the fun is over it’s back to the grind, and paperwork, and advocating to get what we need. We’re waiting to hear on some things, trying to straighten out a few others and generally trying to make the most of the situation we’re in.
For 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.
In 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.
As 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.
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!
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.
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.
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.
Today, 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.
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.
And 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.
I 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.
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.
Get 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.)
Anti-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.
Invest 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.
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.
You’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.