My dad's 86 starting PD I've questions on mental state

#1

Ok so, I’m Angel F, my dad is Angel P. Briefest history is I’m his caregiver since my mom died in 2010 of liver cancer. He is an amputee of R leg Below Knee and all L toes. Due to complications from pneumonia back in 2007, he went on HD for seven months, got function back to 45% and stopped, but was monitored regularly by nephrologists. Fast forward to 2018, and his function started declining. Last “healthy” lab showed him at 15%. We had determined to do PD for him when kidney function declined under 10% per his dr; had done home check and surgical consult. Just were waiting. But then he developed pneumonia again and they had to put him on HD just to help his body drain the fluid build-up. During that time, they let his oxygen drop below 79 for no one admits how long and I ended up with a very confused father who was uncertain about many things. Fast forward a couple months, and here we are. He goes to HD while his PD is healing up now, but his brain is still forgetful and distracted and a bit confused at times. Now, he was heading that way prior to the oxygen deprivation but wasn’t as bad as he is now.

My question: Should I be concerned that since this experience is new and thus filed under SHORT TERM MEMORY, he will pull out his catheter? I’ve talked to only one lady who said her mom started PD when she was 89 but had multiple other health factors and didn’t end up living very much longer after. I don’t know if anyone out there can give me articles or personal experiences with the elderly and memory and PD or HD for that matter. Because it made me wonder if we should go ahead and get a fistula placed anyway on the off chance he has issue with the PD, since it takes months to heal. I’ve no idea how the insurance works either for that, and I’ve got calls to make come next week.
2019-01-26T08:00:00Z

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#2

One of the complications of failing kidneys is memory problems. Getting dialysis may help improve his memory. You could ask his doctor for a referral for neuropsychological testing. This article describes what is included in that testing and how the results can direct a plan of care. PD is a treatment that most people can do independently, but some people need help. Neuropsych testing could help you and your father know how much of his dialysis he could safely do himself and how much help he’ll need from someone else.

Most patients who require dialysis or transplant qualify for Medicare. Here’s a booklet that describes Medicare coverage for dialysis and transplant. Dialysis is also covered by other insurance and state Medicaid. Every dialysis clinic has a social worker and some have financial counselors. They can help answer questions about coverage.

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#3

Thank you. He does have Medicare and private insurance. I am responsible for his treatments once he starts on PD; his memory issues are too advanced (remembering steps correctly every time and doing things in a time sensitive manner aren’t in his main short term memory wheelhouse anymore) for him to do it independently, though I have read many people do. Also his weight is very low and that’s why PD was suggested for him, and chosen by us as the best option for the life we live. But now it’s my concerns going forward about his cognition and recall; I don’t want him to forget what this thing is in his stomach and pull on it, though my wants aren’t running the show. I am planning on making an appointment to talk with the social worker at his dialysis center. I’m concerned more about planning for the future. And wanted to know if anyone out there is around his age or has a patient/family member his age doing PD and how their brains are. If the insurance hoops are brutal or info like that. So what you sent me about testing for the brain I’ll read and see if that helps answer some questions.

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#4

I am a PD patent, male, age 80, fairly active physically, And mentally very alert. I cannot imagine someone you described doing PD. The fluid is heavy, so setup might be difficult. Can he read, and hear computer generated direction? Can and will eh be able to follow the directions for the sterile techniques as prescribed by the nuse. If he forgets, or ignores those he will have Periontitis within a month. This requires weeks of antibiotic treatments to cure, and during that time he will most likely make another mistake. Pain and agony will result.
I don’t know what the answer is, or even if your own physical and mental sate can handle this stress. Cefas 1

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#5

Hi,Cefas1. Thank you for responding. I’m doing all the work so he can just sit back and let it happen, so that takes pressure off of him to remember beyond what I tell him that he needs to do in the moment…but we haven’t started classes yet. His PD cath site is still healing, though he’s had two flushes so far to prove the cath is working. I’m very concerned about him not developing infections so the main issue is whether going forward he’ll forget what this thing is in his stomach.
As far as my own capacity to handle the task, I want my father to live the best life in his end years as he can, and am driven to keep him alive and happy, so I can and will handle any stress, knowing that if I need to, I can always ask for help, or we find another way to keep him around, like maybe going back to HD through a fistula.

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#6

I wish you and your Dad the best.I have good support also with my wife and our son is close. Be thinking of how and where you will store about 40-45 cases of supplies. I bought a multi level cart so the machine and bags are placed on top, with casseroles , drain extensions, drain bags, masks, gauze pads etc at my finger tips. I have a roll of large trash bags there with one open and clamped to the cart. All the trash goes in there for quick cleanup in the morning. Think about showering, and keeping transfer set up and secured out of the way.see Stickman Products for shower. Ask and I will answer from patients point of view. Cefas 1

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#7

Have the doctors checked his serum ammonia level?
That is not routinely checked with the other kidney blood panels.
My husband developed a lot of confusion until we discovered that the problem was his elevated serum ammonia. There is medication to help. The best oral med is Rifaximin (generic for Xifaxin).
We order it from Mapleleaf meds for $1.00 a pill rather than $10 a pill for Xifaxin.
You do have a tall order to physically handle all of this. I hope you also have some help.

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#8

Thank you, Dick. I will check into that, but his mental state was in decline long before he started on dialysis. I’m guessing you meant that he developed confusion when he started on dialysis?
I didn’t come on the site looking for sympathy with the task I’ve set for myself (believe me, I’ve gone through more nights praying for strength than sleeping), so I pray that people understand I just want the advice as I’ve mentioned. It’s a unnecessary reminder to hear every person tell me it’s so hard to do this, especially when I’ve not started the classes yet. It is discouraging not encouraging, though I’m not asking others to provide me courage.

I do have family, though not near, who offer their help in experience with the PD part, but their experience was with a man who was pretty much already bedridden, younger and had many other health conditions my father does not. That’s why I came here, because the community is larger and I was hoping persons could speak to the AGE factor and if mental difficulties were already present or not.

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#9

What percent of kidney function does your father have now? Some people can delay starting on dialysis until they have bothersome symptoms which may not happen until their GFR is below 10. Some patients choose not to start dialysis and instead to have conservative management (palliative or hospice care) until they die a natural death. There is research that shows that in frail elderly patients, dialysis doesn’t extend life that much longer and dialysis and the fluid and food limits can be burdensome. it’s hard to think about losing a parent, but has he said that he wants to do dialysis?

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#10

Beth-I’m not certain why you felt the need to write what you did. Nothing I’ve said above implies that my father is frail and wants to die. I merely said his weight is low and he has some mental impairment. If you don’t think I already know all the options by what I’ve already said above, then perhaps you might want to re-read it. I was looking for helpful articles and personal experiences.

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#11

Thanks! The storage area is already ready to go! The tip about the bags is good. My dad can’t wait to shower again so I will definitely look up the products you suggested. He wanted me to ask, in the beginning weeks of the PD site healing, how did you keep from bending on that side? He’s finding everything it seems is just forcing him to move to press on the site, not just bending but sitting up from bed and getting up from his chair. We’ve fixed heights of what we can, but the fridge and dryer are lower than he can get to now.

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#12

I’m sorry if what I wrote offended you. Research has reported that most patients surveyed have no recall of being informed about conservative management. I’m glad you and your father were.

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#13

Hi This is Cefas again, the 80 year old who started PD about Nov 30.
PD is working for me, but during the past 3.5 months, I have been thru Periontis, Gout, Bronchitis and most nights with multiple alarms for slow drain causing sleep deprivation.

Thankfully, things have taken a turn for the better, alarms much fewer and easily remedied with a trip to the bathroom.

Encouragement is needed, but caution is better. Learn to wash hands correctly and use Purcell sanitizer every time. Even a little constapation is bad, so take stool softeners each day and don’t hesitate to use laxative reccomended by nurse. Stickman enterprises makes a great necklace for holding the catheter up away from the groin area when showering. After the shower, clean site with the wound cleaner and sterile gauze each time.

Clean, clean clean. Next to godliness. The machine speaks, but listening is a must. Pretty soon it’s automatic, but still follow its instructions.

Eat and drink more protein. Eggs,meat, high protein yogurt (fruit flavors), renal high protein milk for cereal, protein powder for shakes and smoothies. Read labels.

Good luck

Cefas

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#14

Hi again. I’m so sorry that these past months have been awful for you!
My dad’s doing ok. He’s now on the cycler which is a God-send vs being on manuals for a month. He was having issues with the drain taking FOR EVER…sometimes just over an hour. But now a few days in on the cycler, his drains are going well, no drain pain after his body’s initial adjustment to the vacuum effect of the machine.
We were definitely advised on all those precautions you mentioned (I guess some people have had really bad luck on that but our clinic and staff have been pretty amazing), and my dad’s been on a ESRD diet for years now, so it’s just making sure that his protein numbers stay up there that we are mainly working on now. Of course, the variety of bad foods out there makes good choices limited but I’m used to that.
I noticed a sharp drop in his mental function since he’s been on PD, that his doctors are aware of, but hesitant to treat without seeing if they improve or decline(his functions) over the next couple months. It’s lots of seemingly little things, like forgetting the order of things or getting big delays in processing a course of action (like getting a container from the cabinet to put away leftovers). And it’s not all the time, and not with everything so it’s hard to quantify and yet I feel I’d be logging at least two incidents a day. He has issues of telling me he’s doing or has done one thing, only for me to find him doing something else or having not done it. Or not being open about how he is feeling physically, when I had to ask him multiple times a day for the manual exchanges especially, which caused him to have fluid overload and cost us a few ER hours only, fortunately.
We have decided to get a back up fistula just in case there’s too much mental decline and he loses the ability to understand what is happening to him for the PD; or if he just breaks communication too many times and I can’t treat him properly using PD, ending him up in the hospital. He understands the necessity for it and we hopefully will have the surgery scheduled soon. He does like the feeling he has each day after the treatment is done though, especially now that he’s empty during the day and he can get back to eating a regular sized meal again. He’s still voiding regularly during the day and we are working together to figure out how to make sure I don’t have the machine pull too much out of him overnight, as we were told if he ultrafiltrates too much it could prevent the kidneys from doing their job. Right now, he’s under 1000ML total for UF per night, so far…he’s only been on the machine since Tuesday night. His prescription is 1200ML with 5 exchanges, 10 hours but that might be dropped down to 4 exchanges because his kt/V numbers are over 2.4 we just found out. So it’s still some learning, but the keeping things clean is VERY important and I know that I don’t want him in the hospital for that! I have already had one nightmare of waking up to check the drain window in the morning and seeing cloudy fluid!! eeek!!

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#15

Cefas, Thank you so much for the update and for sharing these tips to help others do well on PD.

AK2LV, you might want to ask your father’s kidney doctor to review his medications for side effects that could be contributing to cognitive changes. A referral to a specialist for cognitive and/or more in depth neuropsychological testing, which might provide answers to how to limit the effects of cognitive changes on his health, PD, and quality of life. Depression can contribute to cognitive changes. Depression is common in patients on dialysis can be successfully treated with counseling and medication. In the U.S. dialysis clinics are required to have masters-prepared social workers to help patients (and family members) cope with kidney disease and treatment.

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