Drastic Times Call for Drastic Measures

Winters are a stressful time at our house. 

Co-caregivers need to have fun a few kisses

Pain: Give me my husband back

Richard, (aka, my husband and @kreisler), has increased back pain due to many factors: the cold weather, the extra activities from the holidays, the increased stress due to the holidays and, of course, the denial that the pain has increased. Not to mention not remembering this happens Every. Single. Year.

For my part, my job is extra stressful from November through January.  Year-end projects are a nightmare and ever since getting appendicitis a few Januarys ago, my co-workers and I joke that I lose body parts during year-end.  Add in the stress of the extra activities (yes, I know, I bring on a lot myself with my wild ideas about holiday decorating), and, of course, the denial that the pain my husband feels has increased.  Not to mention not remembering this happens Every. Single. Year.

This year, we have the additional responsibility (which, yes, is stressful) of caring for Robert in our home. We haven’t yet experienced a full year of Robert living with us so we’re still working through routines, helping with his ADLs (activities of daily living), keeping him well so he’s not in the hospital or dealing with his hospitalizations (three since he moved in).

Oh, yeah.

I also flunked my stress test which meant having to do another, more intense stress test which really stressed me out.

Richard’s pain keeps him up at night and going months without a decent night sleep is stressful on everyone. He has tried sleeping pills which are not working; he has tried meditation which doesn’t make him calm or sleepy; he has tried staying up all day without napping but that only makes him crankier because he still can’t sleep at night. His doctor is going to have him do another sleep study but who knows when that will be scheduled.

Even though I can generally sleep through anything, his restlessness and periods of wakefulness throughout the night is starting to wear me out.  It is taking a greater toll on Richard, of course, but we both need him to get some sleep.

I wake up every morning knowing he is in pain (him bending over in pain and moving extra slow are a couple of clues).  I wake up knowing that he barely got any sleep yet I persist in asking, “How did you sleep?”

Either I am an optimist or a glutton for punishment but I have no idea why I ask this other than I just want to hear that he slept well – for once!

I want Richard to sleep.  I want his pain under control – after all, we went through a horrible ordeal in September due to something that is supposed to keep his pain under control.

It isn’t and I demand a refund!  (Insert stomping feet and screaming tantrum here.)

Okay, it’s not that easy but shouldn’t something that can possibly put his life at risk be more effective? We’re afraid to stop using the intrathecal pain pump (I say “we” because we’re in this together) because of the exponential pain he feels without it.

Yet, he uses it and still has extreme pain. And stress. And lack of sleep. All causing more pain.

It is a terrible, terrible cycle – one which I can’t seem to change but am wracking my brain for ideas.

Today, I took drastic step #1: I got a massage and a facial to deal with my own stress level.

Today, I also talked with Richard and told him I was taking a drastic step to see if it would help his sleep.  Because if he gets some sleep, his pain will eventually lessen which will lessen the stress we’re under because of this awful pain.

Drastic step #2:  Tonight, I am taking my pillows (and the dogs) to the room down the hall so that Richard has the best shot possible at getting some sleep.

It’s a drastic measure and not a permanent one but I do hope to hear a different answer to my question, “How did you sleep?” (See above re glutton for punishment.)

The answer won’t be different after one night.  It might not even be different after several nights.  But we need to try anything at this point.

The pain needs to get under control.

I’d love to hear what you’ve done when you’ve come to the end of your rope.  What have been your drastic measures?

Profile photo of Trish

About Trish

I am Robert’s older sister and a freelance writer and am also a full-time Legal Administrator for a wonderful law firm (no, that is not an oxymoron). I am the caregiver for my youngest brother, Robert, who has suffered from uncontrolled epilepsy his entire life. In his late-40s now, he lives with me and my husband. I have somehow managed to navigate the maze of social services and government programs available to help Robert and continue to be amazed at the amount of time and persistence that is needed to do so. Robert finds happiness in simple pleasures like doing word search puzzles and watching his favorite shows (Family Feud and Jeopardy, of course!)

13 thoughts on “Drastic Times Call for Drastic Measures

  1. Profile photo of Gail KrollGail Kroll

    Dear Trish? I know I may be way off board here? But is it possible that Richard has Sleep Apnea or has that been already ruled out? I have it. It’s not fun. But with proper equipment one can SOMETIMES get some sleep. Has that been the sleep test he has taken? God bless dear heart! I can only think of you all and wish for the best! Gail

    Reply
    • Richard

      Gail, thanks for your input. I did in fact have sleep apnea and Trish was getting ready to move rooms permanently and the CPAP machine just was not working. I finally went in and had the surgery where they opened the back of my mouth allowing the area that blocked and causes the sleep apnea to be ineffective, this also required the removal of part of the back of my tongue. I know it sounds extreme but I went from snoring like the 4:10 train going through Sacramento and waking our daughter four rooms away to not snoring at all and not needing the CPAP machine. As mentioned, the doctor is setting me up for a sleep study just to check and see how I’m doing. Regarding not remembering that my pain increases going into winter, I do it also increases during the change back into the warmer months (catch 22) I get hit coming and going.

      Trish thinks I get up at night just to get up and that it’s something I control. I get up for several reasons, the lasix pills make me use the restroom almost every 1-1/2 hrs., laying on my back with my legs propped up (due to edema) puts extra strain and in my case “PAIN” on my back and the pain wakes me and at time I need to stretch, which if it’s takes awhile I will go into my office and finally my 5th and 6th loves (after family and mom) our dogs love to be right up against Trish at night and Taz stretches during the night and paws me right in my pump, face, male areas, etc and of course I wake up. I have a FidBid which is a glorified pedometer which also tracks sleep. Five days ago it was showing that I was up (out of bed) 4-6 times a night and restless 11 times, now it’s showing I’m up 12 times and restless 18-23 times and I don’t know why. I also would be interested in knowing you extreme, end of your rope decisions as well as your, I can’t sleep, I did xyz and it worked?

      Thank you for reading and I look forward to any responses we receive.

      Reply
  2. Profile photo of DeniseDenise

    Hi–I hope sleep came for both of you last night.

    It strikes me that Richard keeps track of all that’s going wrong–how much pain he has, how many times he gets up at night, how little sleep he gets. What if he tracked what’s going well? Rather than constantly monitoring how much pain he has, what if he tracks how often he laughs, how often he smiles (or something else that’s positive)?

    I used to have an psychiatrist and physical therapist (Elizabeth Lombardo) join me for monthly podcasts. We often spoke of how to manage chronic pain. She shared an interesting perspective: That much of our physical pain (including pain from injuries and disease) has ties to our emotional pain. She found that when clients resolved their emotional pain, their physical pain became much more manageable. Perhaps a therapist could help find ways to minimize the pain.

    Reply
  3. Profile photo of DeniseDenise

    Hi–One more suggestion: If the dogs sleeping in the same bed with you guys disturbs Richard, could the dogs sleep in their own beds?

    Reply
  4. Profile photo of darciejanedarciejane

    Separate sleeping quarters, yes…..this should at the very least help Trish, which should help Richard too (less worry over her to compound his own issues). For Richard, soft music or maybe a favorite movie that you’ve seen many times, so you don’t even have to watch it, just listen with eyes closed.

    I don’t have chronic severe pain, but I have some mild pain and I’m a lousy sleeper. I do try to keep the room in blackness even if listening to a movie.

    Hope you both find ways to cope and deal with this.

    Reply
  5. Profile photo of TrishTrish Post author

    Thank you all for your suggestions! (Gail, you are not out of bounds – we appreciate any and all suggestions). Richard had the major surgery he talked about and it definitely helped. We both think the biggest problem is the pain he feels at night as well as increased Lasix for his edema. It really is a tough balance! @Denise, we had a pain psychologist who was fantastic but, unfortunately, he had to take a leave of absence to deal with his own health issues. Richard has a call into the doctor to get a referral for a new one because you are right – they help! I can’t even imagine dealing with sleep issues, @darciejane, and am grateful to be able to pretty much sleep through anything. Oh, Denise, we have a dog bed for the dogs and they sometimes start there but always end up crawling in bed and, since I tend to sleep through everything, they scootch me over without me even knowing! Plus, they’re so sly, when Richard gets up they like to take over his spot. :-)

    What’s funny, is last night I woke up a few times but think it was because I was in a different bed.

    We’ll get there – it’s just hard to watch someone you love deal with so much pain!

    Reply
  6. Profile photo of TrishTrish Post author

    I just remembered that we also hauled our recliner upstairs several months ago so Richard could sleep in that and keep his legs up. We were hoping it would keep his legs up without hurting his back allowing him to sleep. That seemed to work for a while but then it stopped working. It’s almost like we have to try a variety of things – they work for a bit, then stop. I wonder if keeping track of these and then just starting over with each solution might help. For instance: sleep in the recliner until that doesn’t work; use sleeping pills until they don’t work; etc., then start over with the recliner, etc. My solution for everything: a checklist! Haha!

    Reply
    • Profile photo of DeniseDenise

      Hi–I think that’s a great idea to be aware of what works and be flexible about what works when.

      I think it’s also good to include on your list what always works and making sure they happen every day or every week or every month (whatever the solution’s timing is). I know I have better days on the days I take a walk.

      During Thursday’s talk show with Ellen Rogin, we spoke about something similar. For instance, I have a few go-to solutions I use on days when I’m feeling particularly fearful. Perhaps you have a list of what helps you feel good. Perhaps Richard creates the same kind of list. Then, on a difficult day, you each refer to the list to make sure you’re using what works.

      Reply
  7. Profile photo of EllysGdaughterEllysGdaughter

    I too vote for Dogs sleeping in Trish’s bed or their own beds to give Richard space!!! We give Lasix, the whole dose every morning so Elly doesn’t have to get up at night, don’t know if that would be a good switch or not! BTW: She is in a UNA boot which works amazing!! Sleeping in a dark room with ear plugs is how I survive Awesome Hubby’s snoring nights. He also takes 1-2 Benadryl along with his allergy med which helps his snoring too. I wish you both the best on your tests and solving the sleep problem!

    Reply
  8. Profile photo of PegiPegi

    Trish glad to see your first drastric measure was to do something for yourself, a nice relaxing massage. We’ve been throught the sleep issues here. Very similar to Richard. Edema, lasix and pain. Jim would get up 4 or 5 times a night. I don’t do well with broken sleep and there are days I get woke at 3 AM and that’s it for the night…long day usually follows. The switching was something that worked for us. Jim slept in his recliner for a couple weeks, at the time helped his legs and I was able to get “caught up”. Then he returns to the bedroom and we start over. Hoping you find something that works for you, its such an awful way to muddle through days and nights.

    Reply
  9. Profile photo of G-JG-J

    Oh, I’m sorry to hear what you’re both going through. I’m miserable when I can’t sleep and console myself with the thought that at least I’ll sleep the next night. It doesn’t always work. And then, not being one to jump to extremes, I worry that I’ll NEVER sleep again!

    I’m afraid the dogs need to sleep somewhere else. You don’t need them waking you up, Richard.

    A friend of mine has a husband with Lewy Body Dementia. She swears by the Glenn Harrold apps for relaxation and sleep. She told me she downloaded it to her iPhone, plugs in her headphones and falls asleep before the end. She also told me her blood pressure is lower and the only thing different is listening to these apps, so it’s worth a try. I think she told me she started with a free app and upgraded. Free is a good place to start!

    Good luck to both of you!

    Reply
  10. Profile photo of ejourneysejourneys

    Trish, I am so glad you got that massage and facial.

    As cuddly as they are, the dogs need to leave you two alone and use their own beds. Years ago we used to watch Cesar Millan’s The Dog Whisperer — he had techniques that taught dogs to stay off the bed during the night. The downside is that as with any training it takes time, patience, and consistency, but it also has a great potential payoff.

    My partner and I have twin beds, attached via swing hinges to the headboard. We both sleep much better when we swing the beds apart so that they look like a V.

    I love the idea of keeping track of what works (and for how long) and what doesn’t. Like you, I’m a spreadsheet geek. :-) If you have a range of data, like a pain scale, it might help you better pinpoint when conditions start to change in either direction. I also love the relaxation apps idea. The song “Weightless” by Marconi Union (you can find it on YouTube) is designed to slow your heartbeat and has been called the most relaxing song of all time. Here’s an article about it: http://www.dailymail.co.uk/news/article-2049948/Most-relaxing-song-UK-band-Boffins.html

    Am keeping my fingers crossed that you both find answers and good, solid sleep. (((Hugs)))

    Reply
  11. Profile photo of ThedogmamaThedogmama

    Hi Trish & Richard. Re-reading my response, it is practically a blog in itself, but although late responding to your post, I thought I would add my two (or more) cents to all the excellent suggestions of everyone else.

    Unlike you Trish, I am a light sleeper. When I was born my mother said “this baby will just learn to sleep through noise.” Two weeks later she started wrapping the telephone in a blanket. When I was a child, the silence of the house when mom and dad went to bed would wake me up. That’s how I earned my nickname, “Big ears”, not a commentary on the size of my ears!

    Fast forward to marriage and a sleep partner who has diagnosed severe sleep apnea. Don’t get me wrong, I love my husband dearly and love sleeping with him, but even after 43 years (this Thursday, thank you very much) we had to take drastic measures so each of us could get some sleep.

    In the last several years hubby has struggled not only with the sleep apnea, but arthritis, insomnia and restless leg syndrome (RLS). Our nights sound so much like yours. Even with the C-pap, which helped for years, once the insomnia, RLS and discomfort of arthritis kick in, hubby is miserable! Moaning, groaning, tossing, turning, getting up to walk, coming downstairs, going to the bathroom, pulling the C-pap mask on and off, coming back to bed. You are way too familiar with the same kind of routine. When you can’t sleep, you can’t sleep, whatever the cause. Add in needing to keep one ear open all night for my mom and my sleep was deteriorating as badly as his, each of us dreading the night and the lack of sleep.

    Here is what we did to try and improve things. It has helped. It isn’t perfect all the time, but we have seen improvement and sometimes that is enough.

    First he went for a new sleep study. This mainly confirmed the continued diagnosis of severe sleep apnea. But it did result in a newer, quieter machine that automatically shuts off when he pulls the mask off so I don’t have a whoosh of air blowing across my face and the sound of the wind waking me up.

    He has had medication added to help with the awful symptoms of RLS. The constant feeling of creepy, crawlies on your legs and arms is, by all reports, horrible and when added to insomnia, creates dreading sleep instead of looking forward to it. The medications have helped some.

    I was getting short tempered. I felt hubby should be able to lie in bed quietly and wait for sleep. I resented the constant up and down, pulling of the covers and bouncing of the mattress every time he turned over or got up. With no extra bedrooms any more, the couch was the only other place in the house to sleep and that isn’t too comfortable. I had to readjust my thinking. As much as I love hubby, I cannot change what is wrong with him that is causing these issues. So I am working on my attitude. Accepting the fact that we all will be better off if I get more sleep, I then did something I never thought I would. I decided to get rid of our queen size bed and dragged a reluctant hubby to the store to find new and comfortable extra long twin mattresses. It took 20 minutes on each mattress, but we finally found them. And, as much as he really didn’t like the idea, I bought separate twin linens also. This eliminated the movement factor in my sleeplessness.

    With his hours of sleep still dwindling to less than 4 on most nights, he again consulted with our physician and more medication was added. It has taken almost a year but with trial and error he has pretty much figured out when to take what to help improve his sleep to about 7 hours a night.

    My sleep improved with the twin beds but for the times when I am exhausted (mentally or physically) I do take a low dose sleeping pill. That way if mom needs me I still can hear her, but really get more restful sleep than normal. (Oh to be in college again when I woke up in the same position I went to sleep in!!) With our sleep improving, I have advanced us to king size bed linens. We now feel we are back to sleeping in the same bed, but because it is still two beds the movement of his bed does not bother me.

    As a nod to my “big ears” I also bought a sleep machine, which has several different sounds to sleep by. The bonus to this was it has also helped hubby sleep more soundly, which we found out by accident one night when he was having trouble sleeping until I came to bed and turned it on.

    As with caregiving, once you find a solution, something happens and everything goes out the window again. It seems like things work for a while and then he goes through another sleepless phase. Fortunately they seem to be confined to a week or so. This is what is helping in our household, maybe some of these might be helpful for you guys too.

    p.s. After losing my Abby two years ago, I haven’t added a dog back into the mix – but I miss having a dog, even if it means interrupted sleep at times!

    Reply

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