Our Most Recent Dilemma

Time for a personal update. First, though, I want to sincerely thank everyone who has taken the time and energy to read, comment on, and/or share my posts thus far. This blog has taken off far faster than I ever dreamed it would, and already I have met so many wonderful people! It feels so wonderful to find others who understand what life with severe ME is like and who are also passionate about spreading the truth about this largely misunderstood illness. Thank you!

Moving on… While educational posts are good (and I have much more to share), I must not forget the primary reason this blog was started, which is to chronicle my journey as a person living with severe ME. In many ways, I consider myself very blessed. Many, If not most, ME sufferers have no access to medical care at all once they become home/bed bound. I was in that situation myself for about six months, and it was beyond terrifying, not to mention agonizing. Nowadays, I receive wonderful medical care from my local hospice team, so I really can’t complain there.

That said, there are needs that are going unmet, and they are becoming much more serious. In order for us to pay the bills, my husband must work full time outside the home. This leaves me home alone for over 9 hours most days. My husband does what he can – most days he rushes home during his lunch break in case I need anything (which I usually do), but that still leaves me alone for 4, 5, 6, or more hours at a time. This isn’t exactly ideal for someone who can barely make it to the commode beside her bed. And the disease is progressing. Soon I will be unable to use the commode at all. Even now it takes a tremendous amount of adrenaline to get me there and back, and I’m forced to use hand rails the entire time lest I fall and hit my head.

Some of you may remember I have a service dog. Obviously I can’t leave home anymore, but DeeDee (my dog) is still a tremendous help. There was a time when just having her here was enough assistance for me to safely get by with my husband gone. DeeDee can retrieve objects, pull covers up or down, open and close the bedroom door (for more air or less light – I can’t have both just right unfortunately), and much more. But there’s only so much a dog can do, and having DeeDee is no longer enough. I need a human here to throw out the liner from the commode if I have a bowel movement so I don’t have to spend hours smelling it (bad enough for a normal person, much less someone prone to sensory overload!), to bring me frozen packs and change them out as needed to help control the extreme bouts of sweating that leave me lying in soaked clothes and sheets for hours on end, and to handle all the other little things that come up. I need a full time carer.

Unfortunately, this doesn’t appear to be happening any time soon. There is a state-run program I applied for with help from the hospice social worker that pays for a carer for physically disabled people, but it turns out there’s a two year waiting list to get approved. Two years! Chances are slim I’ll even be around that long. Plus, I need a carer now, not two years from now. My husband and I can’t afford to pay for someone out of pocket, and don’t qualify for any other forms of financial assistance. We’re in that awkward category where our income is just barely over the limit to qualify for help, but not enough to really meet our needs, so we also can’t afford for hubby to stay home more. And it’s not like we just need a carer for a couple hours a week. We need someone to help out at a level that would basically equate to a full time job (in other words, all the hours my husband is away working full time to pay the bills). Who’s going to do that for free?

Sooo we’re stuck. I’m extremely concerned about what will happen once I can no longer make it to the commode. A time is coming when I will not even be capable of maneuvering a bed pan. In fact, I already have times when I could not physically do this. The number of times I find myself paralyzed to one extent or another is growing steadily, and that’s not even considering the times of extreme muscle weakness and uncoordination. I desperately need to let go and stop forcing so much adrenaline just to meet basic needs. But letting go is a scary prospect when I know there’s no one here to catch me. What am I to do? Line the sheets, wear diapers, and lie in my own waste until my husband can get home? What other choice will I have?

I wish I could say my situation is unique. It’s not. Far too many ME patients find themselves in this same position, or worse. Society today simply isn’t set up to meet the needs of people like us. I suppose when you’re healthy and busy living life out and about, it’s difficult to really think about and imagine needs like ours. People just assume programs exist to care for us. Sadly, this just isn’t true. I hope my husband and I find a solution, and soon. I simply can’t hold on much longer.

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22 thoughts on “Our Most Recent Dilemma

  1. I have no answers for you… I wish I had. But I couldn’t read and not say I’d heard. I hope a solution is forthcoming for you very soon. xx
    PS I left a comment on your previous post about some Blogger Awards. Please just accept, but feel under no obligation to pass forwards. Save your energies for yourself. ((Hugs))

    • Thanks for the support! I don’t really expect anyone to have the answer (though that would be great, too, lol…), but I did want to portray just a taste of the struggles people with severe ME face in the current system.

      Thank you for the award nomination, too! And thank you for understanding about limited energy. I’m spending nearly all of my daily energy either working on posts or replying to comments lately, so I don’t have much left over after that. Also, I’m unable to use an actual computer, and embedding the code from my tablet could get tricky. Still, it means the world that you thought of me! Thank you sooo much! πŸ˜€

    • Thank you. It is definitely difficult for my husband. He’d like to be able to stay here and care for me himself. We just can’t afford it. I do get disability payments, but they’re nowhere near enough to live on, at just over half of what my husband makes. It feels like an unwinnable situation, but we’re still brainstorming, hoping something will come up. Thanks for the support!

  2. I now use pads due to a combination of being too ill to use a commode and double urge incontinence (I’m lucky if I get a minute’s warning- and sometimes I don’t even know I’ve gone). I’m in the UK and my husband is my main carer (a full time job) and we have agency carers in twice a day to help out. If my husband can’t care for me for whatever reason, I have to go into a care home (social services did ask if I could manage without night care, but I asked what I was meant to do if I had a bowel movement and they didn’t suggest it again). I’m under the physical disabilities team here.
    A care home long term isn’t a good place for me. Even the best one I’ve been in is too noisy and requires too much explaining and communication on my part. I’m lucky that living in the UK I get enough disability benefits to live on, and we’re classed as having too low an income to pay for the agency carers (though I have to contribute to the care home when I go there, it’s nowhere near the full cost). It’s not perfect and there are a lot of people struggling to get what they’re entitled to here, but it enables my husband to look after me.
    Incontinence pads aren’t that bad when you get used to them. I find them better than a bedpan for me as they use less energy and don’t require being in a certain position. Modern ones use the same technology as baby nappies so lock away moisture. It means I can wait a little bit if I’m in too much pain to be changed until my painkillers have kicked in, and if my bladder is dribbling rather than urinating properly I don’t need to worry. It does need changing immediately for bowel movements, but I find being able to lie on my side for them is an advantage and I quickly got used to using them and being changed. I used to think I’d never want to wear them but they’re not that big a deal now. The energy I save by using pads rather than a bedpan (I cannot get on a commode now even with help as I faint when sitting) I can use for other things, like chewing food. Might be different for you but they’re worth a try if needed.
    I wish I had a solution for you. *Squishes*

    • Danni – Thank you so much for spending the huge amount of energy needed to share your experience with me. It makes me feel a bit better knowing that incontinence pads aren’t as horrible as I’ve dreaded, and may even save precious energy in the end. I’m glad your husband is able to care for you, and that you and he are able to get a bit of extra help as well. That’s wonderful! I totally understand why a care home would not be a good solution. It’s the same reason I can’t go into one. The amount of constant activity around me, not to mention the inability to control light, sound, etc appropriately and the need to explain things to staff over and over, would be sheer torture for me. 24/7. Definitely not an ideal way to spend one’s final days. Plus, we couldn’t afford one. Not even if it were just a couple hundred a month. I used to take my dog to visit people in care centers locally, so I know what they’re like here, and the cheapest one is *horrid.* I’m glad neither of us are in a situation like that. Thanks again for sharing your thoughts with me. It really does help! Take care…

  3. Sending lots of love your way my friend! I wish I was closer and could help myself. Please let me know if there’s anything I can do from here. Until then I’ll be sending you, DeeDee and your husband all the love and light I can. ❀
    Gentle hugs,
    Meghan, Mandi and Piper

    • Hi Jackie – That’s an idea, and certainly one that hadn’t crossed my mind yet. I don’t think it will work alone for this, because we wouldn’t feel right hiring someone on an ongoing basis after doing a one time fundraiser. We’d want to know the money would be there regularly, month after month. But there may be another time or way we could make use of something like that, so I’m really glad you mentioned it! Thank you!

      • You’re welcome. You know what works for you and what doesn’t, but I thought I’d mention I hired a housekeeper with an understanding from the beginning I only had “x” amount of money and after it ran out, I’d no longer be able to afford her services. Maybe you could keep looking into other options while you use your fundraiser money and possibly have something more permanent figured out for when it runs out. Just a thought. I’m sorry you’re even having to worry about this sort of thing with how much you already handle on a daily basis. I am sending some positive energy your way that you get something you’re comfortable with figured out!

  4. So sorry to read about your difficult and harrowing circumstances. As you say, healthy people don’t give it much thought and if they do, they assume people in your situation are looked after properly by the state, but clearly that is not the case. Thank you and Danni (who commented above) for having the courage to be open about your situations, all the more impressive because it must have cost you dearly in terms of effort and energy. It benefits everyone to learn about the reality of such severe chronic illness.

    • Aww, thank you! You’re the second person to nominate me – very surprising and humbling since I am still a very new blogger in this area. Since I’m unable to use a regular computer to edit the code and post the award, and haven’t been around enough to know lots of blogs (most of the ones I follow have already received this award, lol), I won’t “officially” be accepting and posting it. However, it means a ton to me just knowing people are getting something from my posts. Thank you so much!

  5. About the bedside commode–is it feasible to line it with/sit on a trashbag, that once you’re finished, you can just tie up and throw in, I don’t know, a spare box next to your bed until your husband comes home? I thought it might could help with any unwanted scents, at the very least. I wish I had more options to recommend to you.

    You could also have someone call your local churches and see if they can offer anything to you– a lot of them are big on charity. It’s a bit of a reach, but there isn’t anything to lose–maybe a retired carer might reach out to you!

    Wishing you peace and hoping you are guided to wherever help is available. *gentle hugs*

    Kit

    • Thanks! As far as the commode goes, we actually use liners (basically a thick, drawstring trash bag with an absorbent paper towel inside), so when needed I pull that closed, then close the lid on the commode. That probably helps with the scent as much as anything would, but still, having it in here for hours before being taken out makes some level of smell pretty much unavoidable. We’re definitely still brainstorming. We just haven’t found a solution yet. Thank you for trying to help! It means a lot… πŸ™‚

  6. Hi,
    Thank you for opening this discussion. It has been my pet peeve for ages with ME ‘patient organizations’. I don’t consider them ME organizations but at the moment they are the ones lobbying in Washington for research etc. my issues with them is that they use the severe ill patients to plead their case completely ignoring what we actually need. And that is care! We need home care, doctors with home visits, nurses that do IV’s, care people who help you with your daily needs. But all this is lost on them. Makes me angry and I keep talking to them about it. I’ve list too many friends who ended their suffering because it had become inhumane, these organizations need to realize they are part of the problem. Don’t tell the world you are representing me and than do absolute nothing to improve our situation.
    I’m I off my soapbox now.:-)
    I’m bed bound as a well but luckily enough to be able to yes a wheelchair on good days. Although that is limited because our home is not accessible for wheelchairs, which means I can not use the bathroom with it.
    My solution for commode needs is a bit of a hack. πŸ™‚ because we used to camp like really camp with a pop up trailer(we now have an RV in storage :-() we had one of those portable chemical toilets. We placed it on a platform high enough to sit comfortably and it is a wonderful solution. It has a flush that flushes water with a solution that breaks down the stool. The toilet is small, it has two chambers. The one you sit on and the one that holds the waste. When you flush a small flap opens and seals the waste in the lower unit so no smell can escape.
    To dispose it you turn it on its site where is has clips that hol it together and take off the lower part, empty it in the toilet and it’s done. The ‘chemicals’ are earth friendly and can be disposed in the toilet. That is my solution. Maybe not feasible for you looking at your future needs but I thought I would post it anyhow maybe someone else finds it useful.
    I have a hospital bed with head and foot raise and up and down so I can more easily get out at a height that is doable. My health insurance paid for that. Under the ‘durable equipment’ header.
    Another thing I thought about when you mentioned the waste bag and paper towels. Have you tried those commode liners with gel and neutralizer that breaks down solid waste? The ones I researched claim you can use them multiple times and overnight without a smell. I quickly looked them up and it says here that each liner contains enough powdered gel to treat 32 ounces of liquid and solid waste or 3-4 voids. The powder is already pre- loaded in the bag. To dispose just close it and toss in the waste, it’s biodegradable and landfill approved. It’s called Sani bag commode liner.
    There are also other liners on the market where you have to place a pad in. They didn’t sound as good as the Sani bag. I see the Sani bag is now also available at Amazon. If you are a prime member free shipping a box of 10 cost $21.
    Hope this info is useful.:-) Hope I didn’t typed too many errors!

    Christine

    • Hi Christine – Wow, thank you for such an informational comment! I appreciate you spending your valuable energy typing that up. Thank you!

      I definitely agree that nobody is out there lobbying for the care severe patients actually need. It is very frustrating, because until someone begins pushing for some serious health care changes, there isn’t any real hope for the majority of patients to get what we need. Personally, I’m terrified of losing hospice care by living too long. The hospice medical director/doctor is required to do home visits every so often. His last one was yesterday, during which he tried to alleviate my fears by promising me he will never just cut me off without making sure I have a care plan in place that meets my medical needs. While I appreciate his assurances, I also know from the six months I spent without access to any care, desperately calling doctor after doctor, that no such care programs really exist in our area. So what will he do if insurance demands he drop me? And that’s just talking about basic medical care. I still haven’t found a solution for the daily care I need while my husband is at work. Scary, frustrating stuff.

      Anyway, it’s funny you should mention the commode “hack” you use. We actually borrowed something like that from my aunt and uncle (who live in the same apartment building) when our toilet was out of use for a week or so. It is what helped me finally adjust to the idea of a commode, which I should have started using long before then (the hospice people were *very* relieved when I finally gave in and let them set one up for me!). The camping commode we used was similar to what you described, and we also set it up on stuff to make it so I could use it without the impossibility of squatting so low. Unfortunately, it did not have the handles that are so important on a commode for me (otherwise I tend to fall a lot), was not as stable as I would have liked due to being piled on stuff, and we never could get it at just the right height for me – I always felt like I was either slightly climbing onto it or squatting a bit too low. So I needed my husband there to help me on and off of it safely. With the regular commode from hospice, none of those things are an issue.

      As far as liners go, we actually use those liners from Amazon. However, they do not break down waste like they claim. Trust me, lol. It’s unfortunate, but you would get the same exact results using a plastic bag and paper towels. We tried making that switch (probably around the time I wrote this post), but could not find the right sized plastic bags that were thick enough and had a pull tie built in. Glad makes some, but we were unable to find them. Not even on Amazon. So we’ve gone back to the regular commode liners you mentioned and now have an automated delivery set up through Amazon. They’re expensive, and don’t break down waste like they claim, but still much better than hubby having to clean the commode out by hand each time. Thankfully, with the commode lid down, no smell escapes unless I have a bowel movement, and then the smell is minimal (if hubby is gone, I usually light a candle and pray nobody comes to see me until hubby has a chance to throw it out). So far I’ve been lucky, but I’m sure one of these days a nurse will have to visit while the bag is still here, or my aunt and uncle (who often help us in various ways) will stop in, and I will be embarrassed and humiliated. I hate having to smell it myself, too, but such is life without a carer.

      I also have a bed where the head and foot raise. Unfortunately, I didn’t get the luxury of insurance paying for it at the time, but was lucky enough to have a family member offer to pick up the expense when they saw how much I needed one. It is actually a split queen bed (basically two twin mattresses next to each other) made of memory foam material, which helps with preventing bed sores and such. It even has a massage feature built in, which I can’t always tolerate, but when I can, that also helps keep blood moving. Having the other side of the bed be a separate mattress helps when hubby is in here visiting, and also helps give my service dog an area to jump up and help me / be with me without jostling my mattress too much. Definitely a plus. And yes, being able to raise the head of the bed helps sooo much when getting up to use the commode! I tend to get super dizzy, so it’s good I have the bed to rest back on while getting more upright. We also put a side guard on my side of the bed, which helps keep me from falling out, and also gives me something to hold onto while standing up to use the commode. I actually transfer from leaning on the bed rail directly onto the commode hand rails, since the commode is just a couple feet from the bed. It works okay for now, but I’m having more and more difficulty getting out of bed at all, and more and more periods of paralysis where I cannot move at all and must “hold it” until I’m able to move again. So far I’ve had very few accidents. I’m hoping a solution to the carer situation will present itself before things get too much worse… But if not, we’ll have to make do the best we can.

      Anyway, thank you again for the thoughtful comment! I hope you have a wonderful week.

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