I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: drgirlfriend on November 15, 2011, 07:01:34 AM
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Hi Everyone!
I have a concern about the bf. When we met a few years ago, he was by far the smartest person I had ever met. He got his Masters in Library Science on full scholarship at age 25 and could have gotten is sooner but he took time off to travel. He is funny and talented (he draws an online comic - jimmyjone.com) and has a vocabulary as wide as the ocean.
Since the kidney failure diagnosis, he feels as though he is losing his edge. I have noticed him floundering for words and forgetting things. I tell him it's just the stress of everything we've been thru and are still going thru: he hates his job and has been looking for a new one for over a year. We got blindsided by the kidney and pd. We moved right before his catheter surgery to save money. Every job I've had since moving here has been stressful, low paying, ridiculous or all three. Now we're moving again due to bad property management and waiting to hear back from the 2 job interviews he's been able to get all year. I haven't worked since May. God knows I feel crazy and stupid half the time!
Has your loved one slipped a little? Is it the kidneys? Is it just trying to cope? What do you think?
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It's the disease. I used to be smart, too. I used to remember everything. I could replay full conversations for you days later, almost word for word. I could read things and have great recall later. I used to ace test without studying because I could remember things from thelectures and from reading the material just once. Now I don't remember from one day or hour to the next where a friend tells me she's going on vacation the next week. I don't remember when she said she's leaving or when she's coming back. I call to check in with friends on Saturday afternoon/evening about walking Sunday mornings. I have to think hard - did I call Sue yet or not? Did I have lunch today (poking belly to see if I'm hungry)? I'm a tech writer and I forget how to spell simple words. I get disoriented very easily.
Maybe stress can play a part in it in that it exacerbates everything, but I'm not stressed out. I've had kidney disease most of my life. I try to live a pretty low-stress life and the disease itself doesn't really stress me out - I've had 40 years to get used to the idea. I feel as prepared as I can be. The congnitive decline started a few years ago as my kidney function got worse.
It's also possible that depression is coming into play. I think depression is pretty common in kidney disease patients. It makes sense - our body chemistries are all messed up. I don't feel depressed, but who knows what kind of chemical wars are really going on inside?
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Deanne - your post brought tears to my eyes. You sound a lot like by bf, and I feel so terrible about this happening to anybody. I know that he is depressed about a lot of things including the kidney failure and wish I could get him to address it directly. You're right about the "chemical wars". Who really knows what's happening in each person? Thanks for sharing your thoughts and experience.
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I have seen that too. In my opinion it's sorta both. I think when someone is faced with chronic illness and how over whelming it is, it is sure to keep your mind preoccupied with that before anything else in life. Recently when I wasn't home, the fire company was out because he was making toast that burnt so bad the whole house was smoked up so bad they had to use the giant fans to air out the place and the fire alarms in the bldg. went off. He "didn't notice the smoke behind him as he stood at the stove. I know, that's scary. He thinks he may have Alzheimer's but I said I think with that you wouldn't even know you had it. Other people would. Depression that comes with this, that is sure to throw you mental state off. Even a "normal" (may I say that?) person can have a hard time concentrating when other issues arise and come to the forefront.
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That IS scary! Glad no one got hurt, texasstyle.
To be honest, I'd rather deal with any obviously physical ailments than face the fact that my bf may be losing his mental faculties. That is far more painful to me. It is such a big part of his identity and enjoyment of life that it breaks my heart.
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It's the disease. I was the same way right before I started dialysis. :grouphug;
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My husband is one of the most intelligent people I know (and he likes to keep reminding me of this! :P), but despite NOT having kidney disease, he is the one who is so absent-minded that he put our electric kettle on the stove and turned the fire on under it. It melted. I have another story about him opening up a packet of coyote urine in the kitchen while I was making dinner, but I'll save that one for another day. My husband has a very stressful job PLUS he is worried about me, so he doesn't have room in his brain for little stuff like trying not to burn the house down.
I, on the other hand, have had CKD for 20 years and take a shedload of pills. My egfr is crap, but I'm not on D yet. I have noticed a bit of aphasia; I sometimes have a hard time finding words. But I had major surgery 3 years ago and had a bad reaction to the anesthesia, and it was right after THAT that I began noticing my verbal limitations. In my case, I don't think CKD is causing measurable mental difficulties.
But I WILL say this...I AM getting older. And to be brutally honest, I tire easily, and I am increasingly finding it exhausting to concentrate on things in which I am not particularly interested. I still enjoy learning, and I watch a lot of DVDs from the Teaching Company about all sorts of things from the history of the High Middle Ages to appreciating great music in the Western tradition. But I am increasingly impatient with stuff I don't care about. My husband likes to see movies that he's enjoyed as a child or as a young adult, but that is very rare for me. I feel like I don't have time to do stuff I've already done.
I am also very distracted. CKD as severe as mine takes a lot of brain power to manage. I don't have a "caregiver" to arrange my appointments or to educate me or to make sure I order my pills or to even make sure I take them at all. I do everything PLUS I have a husband to look after, so I don't have the time for a lot of intellectual pursuits other than the ones that I can pursue on my TV screen late at night.
Depression and fear can take over your brainspace, especially if this is all new to you! Disease and meds can mess up your mind; kidney disease affects just about everything in your life, even the way you think because suddenly there are so many scary things you have to think about. And you HAVE to think about them because if you don't, you'll die. And THAT in and of itself is a lot to think about!
In summary, I honestly don't believe that ESRD/CKD in and of itself and by itself causes the mental problems. There are some studies that suggest that dialysis patients do experience some cognitive decline, but such things are awfully hard to quantify. I personally believe from what I have observed and experienced myself, depression, fear and distraction play a greater role in this sort of decline.
Intelligence suggests adaptability. More intelligent people are more flexible in the ways they adapt to change, so if your bf is as intelligent as you believe, he will find new ways of coping. But I suspect that the other obstacles in your life will first have to be overcome before he notices any real improvement. He is dealing with an awful lot in such a short time, so it pains me to think of him having this extra worry in his mind.
I hope he finds his way through all of this. Thank God he has you!
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I tend to agree that managing any and all chronic illnesses can affect a person's overall ability to cope and 'juggle'. My experience now is that I MUST write down every appointment and get them added to my Outlook calendar to ensure I remember them all. I also do more 'to do' lists to make sure I follow up on scheduling appointments, getting pharmacy/med issues cared for, etc. It really can be a 'full time job' in addition to working your real full time job. Heck, now I add all kinds of stuff to those 'to do lists' so I don' forget anywhing (pick up a birthday card, buy stamps at the post office, whatever !). I don't think it's (yet) an age thing, just so much to manage now.
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drgf, I notice that my hubby's mental moments come and go. He has days that he is the same sharp minded guy he always was and then days that he is so far off his norm that he even looks confused and unsure of himself to me. It is heartbreaking. I asked his neph about this a while back and he said that a lot of it is due to toxin buildup and the better clearance he was getting, the less of this he would experience. And that makes sense also. But I don't think it's all due to toxins. I think there are days he just feels crappy and so he is focused on how bad he feels.
Bless you, GF, for standing by your guy.
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I've always been considered pretty smart, not by my assessment since I'm fully aware of my intellectual shortcomings, and was a high achiever by the standards of our educational system. However, on dialysis I was most definitely functionning at below my norm and I was young the first time around (26). I was teaching in our university system and kept up with my obligations but with great difficulty on my part. What used to be easy, exciting and welcome challenges (research papers and so on) became mountains to climb and also felt irrelevant and futile. Both the physical and intellectual diminishment are hard to accept and I did my best to "keep up" but I think that nocturnal D is probably the best (maybe the only) way to really hold one's own. Even on short daily (well, 5 days a week) I was not as sharp and a part of this whole illness for me is accepting that the limitations are really quite pervasive. Everything is a question of degree, all is relative, and sometimes good enough just has to suffice.
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You make a good point, Monrein. I suspect when you are young and at the height of your adventurousness and the excitement of life, the diminishing of intellectual prowess due to disease is more noticeable. When you get to be an old fart like me, you're at the point of just trying to muddle through the best you can, and you're just happy to be alive. :P
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I agree MM, I'v been young for ages now, and keep noticing how stupid I'm becoming. Thanagain. I don't remember many people ever calling me very bright anyway. Maybe I'm not very young anymore either. I forgot
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LOL! cassandra, you're hilarious! I think this may be one of those times that age may be a factor. I'm much older than my bf and when I'm not working full time, I feel as though I'm getting more stupid by the day. I really need the routine and stimulation.
And that's an interesting point, looneytunes. Looking back I think he was more out of it after diagnosis and before pd. He'll be getting on the cycler in 2 weeks, so maybe that will have a positive effect.
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We had a PD nurse that talked about how dialysis patients have so much to juggle and they have to do it with "toxins." Now when hubby forgets or is struggling with something that three years ago would have come in an instant, we simply put it down to "The Toxins." I've noticed a huge difference although it's getting better now that he's started hemo. I guess he's keeping "The Toxins" at manageable levels.
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The picture of my own cognitive decline pretty much mirrors Deanne's experiences. I would add one thing--my sense of who I was used to be centered in intellect. Now I realize that connecting with people is far more important. A wise friend reminded me when I complained, jokingly of course, that 'that machine' was removing brain cells along with the fluid, nobody will notice the difference but you, he said. Whatever the causes are, this is probably another of those things we have to make peace with about dialysis. Good luck on the journey.