This Hard Road

[Marilee]

This week, hubby and I spent an hour with surgeons. They wanted to schedule a surgery to remove a polyp in/near his appendix (It’s too far in for a typical colonoscopy to clip out, so it is a matter for the general surgeons). It’s not cancerous or even pre-cancerous – as far as they know - but they couldn’t assess the risks associated with infection to the peritoneum, and they couldn’t say how long hubby’d have to be off PD to recover. This lead hubby to state that he would not consent to this surgery, and at some point he said that he really thinks he can only stand to be on dialysis for another year or so. He said it’s taking a toll on me, his wife. He hates that I’m spending my retirement years as a caregiver, and he feels rotten that it’s his ‘fault’. Of course, I started to cry.

Later, I read the notes that the doctors wrote about the visit, which read, “the wife is stressed from helping with dialysis”. But that’s not really the truth of the matter, and I’ve been pondering, trying to really understand what is dragging me down.

Dialysis isn’t actually hard for me. I can manage the bags, the tubes, the cleaning, the inventory… these are merely chores and not particularly onerous ones. I can manage the monthly visits to the clinic; researching things like dietary changes, symptoms, and such; and I can manage keeping track of all that to chat with the doctors and nurses each month to help make sure we’re all doing the best we can towards hubby’s health.

The clinic has a social worker assigned to offer up help that the VA can provide, and it comes down to things like sending someone to the house to help with bathing, or watching after hubby if I need to do some shopping. These are things we don’t actually need, so the social worker has no way to help me. She has offered to help getting things like a shower chair, but I’ve already reworked the bathroom – widening doorways, adding grab bars, a lovely bench, a hand-shower, a box for a towel so that it’s handy and dry inside the shower. I’ve learned how to trim his toenails, give sponge baths, detangle hair.

No, caregiving isn’t hard – dialysis isn’t hard - but getting inadequate results from dialysis is. What I struggle with is loss and failure. These are the situations that cause me to puddle up, get angry or have hissy fits:
•   Where a year ago he could go to town with me for a little shopping or eating out, now he sleeps.
•   Where a year ago he could walk unassisted, he now needs a cane or a walker and can only manage a few feet at a time. The fear of falling is real because he has fallen at least 5 times - and I cannot successfully catch him.
•   His mind now sometimes experiences levels of dementia and that combined with dreaming, PTSD and hearing loss have made communication so very difficult, confusing, frustrating, and often unsuccessful.
•   This year, his appetite has been so dicey: Foods that work one day are nasty the next. I’m throwing food away – something I hate to do. I’ve been struggling to get his protein levels up with limited success. The menu gets more and more limited.
•   This year it has been up to me to: Repair a leak deep in the ground in the backyard; change a few sprinklers; repair coolers, get new coolers; get the car’s tires fixed… all tasks that were historically hubby’s to take care of. The task itself isn’t too hard – it’s the emotional turmoil over WHY I’m doing it and how inadequate I am to the task.

Hubby thinks that if he died, he’d be helping me out because I wouldn’t have to do the dialysis and related chores. I wouldn’t have so much frustration over communication. I wouldn’t have the hassle over the food.

And so I feel horrid that my pain is causing him to think along these lines. And around we go, down this very hard road.

[lulu836]

Marilee.....I am so sorry you and "hubs" are having so much trouble with dialysis.  A major illness of any kind is so very difficult for all involved.  Fortunately for family and friends, it is me that is spending retirement years on dialysis.I have been on in-clinic hemo for a few years.   I have had a number or other things attack me the latest of which is macular degeneration.

I have a chest catheter which makes bathing particularly difficult. I also get "picky" with food and sometimes I sleep too much.  Dialysis seems to me to be exhausting sometimes.  I can still drive my car but only to and from dialysis; dining out and movies are still possible with someone else going with me.  My favorite thing to do before dialysis grabbed me was travel. It is now not possible because of mobility and other physical issues.  My last and final cruise was through the Panama Canal.

I know this reply does not speak to any of your worries in a helpful way but I'm sure some of the caregivers on this board will respond when they read your post.
 

[cassandra]

Hi Marilee (and Lulu836) I’m very sorry for both your situations.


Marilee is it not possible to either ask people you know to help with all those extra chores? Or pay for some of the heavy things?


I’m very angry that you have to deal with all these complications by yourself.


Lots of love and strength, Cas

[cassandra]

I found this site, maybe one of them can help, or give you info where you can get the help you need.


  [size=78%]https://abqlibrary.org/socialservices[/size]


Good luck Marilee, and love as always


   

[Marilee]

Thanks so much, Cassandra and Lulu for reading my long post and sharing with me. I've tried hiring help for some of these tougher chores, and finding good help takes some trial and error. I reckon it will improve with practice.

The more I think about it, the more our situation reminds me of the story, "The Gift of the Maji" (https://en.wikipedia.org/wiki/The_Gift_of_the_Magi), in which a married couple each sacrifices for the other's happiness. But our situation is a bit more extreme than hair combs and watches.

I think what's happening is that I'm in mourning, and it gets triggered whenever I face loss or failure in this process. So I cry, stamp my feet and eventually get back to normal, but my sadness has left its mark on my poor hubby, who witnesses my grief. We each want to help the other out of pain, but we really can't, and I think it's driving my hubby to distraction because he sees the situation as so out of balance.

[MooseMom]

Marilee, I think you've correctly identified the central problem...you are grieving, and we can all see why.  Your husband is losing the ability to do so many things, and you are sharing his losses while at the same time are having to "pick up the slack".

But please don't equate "loss" with "failure".  They really are not the same thing, particularly in your situation, and I worry that if you view your situation as being exacerbated by any "failure" on your part, your pain will increase, and thus so will your husband's. 

More often than not, loss is random and inexplicable.  There is not always a reason for everything.

Marriage is rarely a 50/50 proposition.  Every marriage goes through periods where one spouse needs more support than the other. 

Tell your husband that your situation is not so out of balance.  It is hard, and usually unnecessarily and unhealthily, to quantify "suffering" and/or "burden".  It is not a contest.  He is greatly burdened with the physical and emotional consequences of chronic illness, and you are burdened with having to keep things on an even track.  Neither of you are in envious positions!  You both have understandable reasons to grieve.

I am sorry this is happening to the two of you, and I do hope that you both find some kind of peace.  I'm sure you are both exhausted in every sense of the word.

[Marilee]

Thank-you, Moosemom, for reading and responding. I cried when I read your post because it rang so true and clear.  I think my lesson in all this is that "failure" can only apply where "success" is possible (like making a soufflé). If I make a meal that he doesn't eat, I have to remember that my success is that I made the meal - and let go of anything beyond that. I was full of failure because the good folks at the clinic look to me to boost his protein, but all I can do is make it available - the rest is up to hubby and his ability to eat. I have spent a lifetime getting good at stuff - good at my job, my hobbies, being hubby's assistant & partner. I never got good at letting go of results (which all the wisdom of the ages tells us to do to achieve 'inner peace'). My success will be when I can truly do that. I'll still be grieving the losses, but I won't be suffering the personal self-attacks as well.

It's kind of amazing: After the 'big reveal' at the surgeon's visit, I was motivated to make that music video (the one I shared in "the music in our lives" thread) featuring our wedding photos. Hubby watched it and said, rather unemotionally, that I did a good job with it, and I thought that it might have been too much on the 'mushy side' for him... but then I began to notice a gentler, kinder atmosphere about him and today he wants to go with me into town for a little shopping. Hubby's mantra has been, "Don't let 'what you can't do' get in the way of 'what you can', and I think he'd reached a point where what he can't do became overwhelming and just couldn't see anything that he CAN do. Perhaps today, he CAN go to the store and ride around in the little cart and instead of seeing that as loss and failure, he'll see it as 'what he can do'.

[MooseMom]

Dearest Marilee,

There is so much I want to write to you, so many words tumbling around in my head, that I can only hope that what eventually shows up on this screen makes some sense.

I am glad you mentioned your video; I had missed it.  It is just as well because I don't think I would have really "understood" what it truly meant if I had watched it before reading this thread.  I've just watched it, and it gave me a true insight into why you are grieving.

I have never been in a caregiver role in the same way that you have; I've never had to care for someone I loved dearly while that person had to live with severe chronic ailments.  To see you and your husband so young and so hopeful about the future to "seeing" you both now in such difficult circumstances all these years later really showed me how emotionally shredded you must both feel.  I myself could feel the loss, and that's just from watching your video!

"I'll still be grieving the losses, but I won't be suffering the personal self-attacks as well."  I am extremely happy to read this from you.  You are extraordinarily self-aware, and this will help you, I know it will.  Your life is hard enough without creating a new enemy in yourself.  You deserve to show yourself mercy.

My son, when he was very young, was diagnosed with autism.  We didn't know how "autistic" he was or would be; I didn't know how his life would turn out.  I had to attend way too many excruciating "assessments" by doctors and/or educators.  It quickly became easy to tell which of these people had a kind heart and a good head.  The ones who would tell me not just what he COULDN'T  do but what he COULD do were the ones who gave me the most assistance and the most confidence to soldier on.  So, I'm glad to hear that you are thinking in the same direction, that you are taking notice of not just what he can't do but, just as importantly, what he CAN do.  And that's not always easy because when you're tired or disheartened, the losses will suddenly loom large and they will pounce upon your bliss.

But I am hopeful that as you practice this revised way of thinking, the thoughts of loss will diminish while the celebrations of achievements will grow in number.

Thank you again for directing me to your Qchord video.  It's not something I will forget anytime soon.

[lulu836]

Nvm

[Marilee]

Thank-you, Moosemom. I'm going to be re-reading this thread often as the road unfolds because there is love, strength and wisdom in it.

This thread has helped me so much. I had debated posting it - I didn't want to come and whine. I'm glad I finally did, and I hope that other caregivers may draw from it as well. That's the beauty of bringing stuff like this out in the open.

(ps. This is the only place that I have shared what happened behind the making of that video.)

[MooseMom]

There is a vast difference between "whining" and simply unburdening your soul.   

Besides, even if you were "whining", it wouldn't matter.  That's part of the IHD mantra!  And I think you know it, too, deep down inside, and that's why this is the only place you've shared the inside story of the video.  You knew you'd be safe.

[Simon Dog]

Hubby thinks that if he died, he’d be helping me out because I wouldn’t have to do the dialysis and related chores. I wouldn’t have so much frustration over communication. I wouldn’t have the hassle over the food.

It is possible to admit that this is indeed true without diminishing your commitment to help him as best you can.

Frustration is aggravated by forcing yourself to live the lie of believing only those things a "nice person" is supposed to believe.  The cognitive dissonance that arises from forcing yourself to pretend to believe "it ain't so" just adds to the stress.

[PrimeTimer]

After 3 years of doing home hemo for my husband and my getting burnt out and then sick, we agreed he would go back to doing in-center. Was the right decision for us. My husband admitted that he had a lot of anxiety over the stress and work I was dealing with doing home hemo. He felt guilty. But I thought I'd feel guilty if he did in-center dialysis. We were both proven wrong because ever since he went back to doing in-center, we are both in better moods, have more energy and a heck of a lot more time to live life doing things together. He works fulltime, goes to dialysis 3xweek and we enjoy our evenings and weekends doing whatever we want together. No more "house of pain", no more "house of boxes and inventory" etc, etc...our home is where we enjoy life and not so much like an infirmary anymore. He goes to dialysis, gets cleaned out and then comes home to a regular life. Neither of us feel guilty and there is certainly no blame being placed. We plan our days and outings accordingly. No one is stressing out or crying over the other. Ever since we revamped our life it has been such a relief and the whole experience has brought us closer. It's a hard road but I believe that the honesty we have given each other was a gift. Our whole life in general has improved. We are much much happier, we rest better and play a lot more. Finally! So my hope is that you and your husband can come to terms and decide which priorities are worth sharing together, which to let go of and which ones that may possibly bring happiness into your marriage. But you must be completely "bare bones" honest with each. Good luck! Perhaps you can make a sort of fun game out of this while you revamp things. Have fun!

[Marilee]

Hubby thinks that if he died, he’d be helping me out because I wouldn’t have to do the dialysis and related chores. I wouldn’t have so much frustration over communication. I wouldn’t have the hassle over the food.

It is possible to admit that this is indeed true without diminishing your commitment to help him as best you can.

Frustration is aggravated by forcing yourself to live the lie of believing only those things a "nice person" is supposed to believe.  The cognitive dissonance that arises from forcing yourself to pretend to believe "it ain't so" just adds to the stress.

Thanks, Simon Dog. I've been thinking about this post a good bit.

The thing is, it isn't quite true that he'd be helping me out. I want better communication with him, not zero communication; I want to enjoy a meal together, not learn to cook for one... It doesn't solve problems - it merely changes them. I want to be neither the reason he lives (if he doesn't want to) nor the reason he dies (if he still wishes to live): Both are burdens to my soul.

It reminds me of finding the genie in a bottle who grants wishes and no matter how carefully you word your wish, you end up worse off than before. So when hubby says, "she'd be better off without me", I can't honestly know that it's true, but I can honestly say there's pain either way, and I will be living through all of it.

[Marilee]

Hi PrimeTimer!

I'm so very glad to read your post here. So often I read about hemodialysis being such a drain (folks have reported that they need a full day of rest to recover and then it's back to the clinic the following day) that hubby has shied away from that option. It's really good to read that your life together significantly improved when your hubby returned to the clinic for his treatments.

I wonder if that is the case for the majority of hemodialysis folks...

When we see patients waiting for their "turn in the chair", they mostly look so tired, so weary, so ruined that hubby says, "I'll never do hemodialysis..." But then again, we don't see those patients leaving after the treatment - maybe they're way better afterwards.

I wish we could know before getting the fistula or chest catheter. I wish we could "try before we buy".

[iolaire]

Marilee, sorry that you are going through this.

I interpret most of your stress points as more the side effects of aging and declining health more than strictly dialysis related.  And in that context I wonder if some sort of spousal counseling might help to minimize your stress level (similar to the benefits of sharing on this forum)?

I'm including this link that relates to depression because its from NIH, versus most of the spousal counseling search results that bring random websites that I don't trust.
https://www.nimh.nih.gov/health/publications/older-adults-and-depression/index.shtml

So often I read about hemodialysis being such a drain (folks have reported that they need a full day of rest to recover and then it's back to the clinic the following day) that hubby has shied away from that option.

Regarding dialysis when I think of the wasted day after dialysis I feel like that's most likely right after the dialysis session when people come home wasted.  The common early 6 am shift many do is not the only option for treatment times.  An afternoon shift might mean hubby basically goes to sleep after he returns home and has some dinner - allowing a full night of sleep that might leave him feeling better for the free day.

Its hard to tell if HD would improve him or not but psychologically it would move the "burden" from you to the clinic, if that helped his will to live it could be greatly improved. Also the center would be motivated to improve the dialysis results and might help with more frequent testing and dialysis prescription changes to try to address inadequate dialysis.

On the flip side if he's having challenges with communication he might face significant stress at a dialysis center.  From my in center time I feel like its probably very hard on communication challenged patients, especially if you are in an area with lots of staff that have unfamiliar accents.

[Marilee]

Hi Iolaire!

You are bringing up so very important point about looking to solutions outside dialysis as well.

I read the article from NIH and it got me thinking... We are no strangers to the treatments for depression because they are the same as the treatments for PTSD. Then I started to look more closely at his meds again...

Hubby takes medications for high blood pressure, cholesterol, PTSD (Prozak) and more - something like 14 different medications every day. After he started falling down (uncoordinated, and weak), they checked his brain earlier this year and said, "mild dementia", they actually boosted his Prozak a little but he didn't feel any better, and it hasn't been reassessed. I wonder if Prozak and/or a combination of blood pressure lowering meds is really the reason for his sleeping 16-18 hours each day, his lethargy, his weakness. Those are the key things keeping him down.

It could be coincidental that this all tumbled down at the same time that he lost his residual kidney function last year.

I am going to bring this up with his primary care doctor to see if there's someone who can take a fresh look at all these meds and their side effects.

[PrimeTimer]

Hi PrimeTimer!

I'm so very glad to read your post here. So often I read about hemodialysis being such a drain (folks have reported that they need a full day of rest to recover and then it's back to the clinic the following day) that hubby has shied away from that option. It's really good to read that your life together significantly improved when your hubby returned to the clinic for his treatments.

I wonder if that is the case for the majority of hemodialysis folks...

When we see patients waiting for their "turn in the chair", they mostly look so tired, so weary, so ruined that hubby says, "I'll never do hemodialysis..." But then again, we don't see those patients leaving after the treatment - maybe they're way better afterwards.

I wish we could know before getting the fistula or chest catheter. I wish we could "try before we buy".

quote author Prime Timer: Marilee, I completely understand...I am so glad that my husband isn't one of "the ruined" as you put it. At least not yet. With Halloween upon us this week I suppose he feels he is going to the "Village of the Damned" but I know that he has great camaraderie from his chair mates and the other souls there who have hung in there for the long haul to be cleaned so they may return home to their loved ones to enjoy their day. Sometimes hubby needs a nap, some days he's flying as if he's a kid again. He says that altho his labs were better when he did home hemo, he actually feels better doing in-center dialysis. Hmm. Go figure. I hear that he and his dialysis comrades are a  lively bunch in the mornings, I can just imagine the wisecracks said between these men and the staff. I'm just glad he comes home feeling well enough to work a full day and spend some time with me. He goes to dialysis and then comes home being pretty much able to leave "the ruins of dialysis" behind as to not become one. I hope they can figure things out for your husband, you are certainly devoted! Please keep us informed, we wish you the best! 

[Marilee]

Some Good News, I think:

As a result of the meeting with the surgeons (the one that started this thread), the "Palliative Care Team" at the VA contacted us to set up a visit! They are a team of doctors, nurse practitioners, social workers, psychologists and pharmacists who are dedicated to making hubby's (and even my) life more comfortable (less pain, more strength). We'll be meeting with them in early December to see what's possible and this is really encouraging to me. I see this as folks to talk to regarding all the roadblocks that are making this such a hard road.

I had always assumed that palliative care was hospice care (ie., for terminal persons), but apparently it's not. I'm eager to learn more at the first meeting.

[lulu836]

 

[Marilee]

UPDATE - A New Year Indeed:

Over the Christmas holiday, hubby woke me after midnight to take him to the Emergency Room. He was suffering chest pains, vomiting, coughing… grim, scary stuff indeed. This turned out to be a MAJOR BLESSING because in the 10 hours there we learned some things. We learned that his heart is just fine, his lungs are fine, there are no blood clots… Instead, he’s got a hiatal hernia and esophagitis, and has had for quite some time (the ER doc found a note by the GI doctor from last September about it – somehow neither hubby nor I got that memo back then).

Anyway, this past year of him sleeping so much (lying down) combined with the peritoneal dialysis fluid pressure, and eating in bed, have caused some trouble and the symptoms include things like chest pain, shortness of breath, weakness, reduced appetite – all the things that were making hubby fear the end was near.

This week, I bought him one of those fancy adjustable beds to help keep his throat elevated – we’ll get it set up next week – and the docs have him on acid reducers.

This is huge! It means that hubby doesn’t see “the end is near” because he knows his heart is good, lungs are good and he has a reason for all the scary, uncomfortable symptoms, and we have a direction to improve them.
 
(ps. This came to a head over the holidays because it is tangerine season, and I had bought a huge bag of ‘em. I had no idea they’d cause such pain to an already inflamed esophagus, but I know now!)
(pps. ANOTHER thing that started out 'bad' but turned out 'good' came in late November: He'd had an eye surgery that left him delirious for about 3 weeks. I started him on Omega-3 oil because I'd read that the delirium might be brain inflammation and omega-3s are anti-inflammatory. Within 12 days, he 'woke up' clear minded for the first time in weeks, and noticed that his hip, knees and shoulders didn't hurt any more. He can walk without pain! Now if he can just get some strength back...)

[MooseMom]

There are a LOT of "blessings in disguise" stories in your post, Marilee!  I'm glad to see that after a lot of suffering, a lot of good news came to the surface.

This is a good start to 2020, and I have hopes that it will only get better for you and your husband.  Let us know if the new bed turns out to be even more helpful than you anticipate!

[cassandra]

Lovely update Marilee. I could cry. Thank you. And of course All the Best for the rest of the year 


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