Swollen Legs and Feet

riajean

 Hi again from me......got yet one more phone call from MC last night (there's no peace anymore) saying the nurse practitioner was in and in checking my husband found his legs and feet to be swollen - to the point she was concerned.  He's NEVER had issues before this wonderful disease and only at one point last Fall did I see any swelling in his feet.  Now, they want him on Lasix and compression socks - good luck getting him to allow that to happen - and schedule an Echocardiogram.  SO, another night full of despair.  Don't get me wrong, I KNOW and am fully aware of the end result of this and after 7.5 years of active duty, it's not as though I haven't prayed for some sort of organ failure.  BUT, in saying that I still don't want him to die.  This just puts me and keeps me in a state of fog and disbelief.  Anyone else experience this?

Thanks for listening, yet again.

toolbeltexpert

Riajean I am so sorry this disease, it just keeps on down the road  in the desert that is straight for what seems like a thousand miles with no end in sight. I am like you and pray for a merciful end.

M1

riajean I'd think long and hard before embarking on any evaluation or treatment.  Depends on where he is with the demetnia, or course.  Is the swelling bothering him--or just the nurse pracitioner?  Big difference.  Lasix/furosemide is hell to take--will make him have to urinate urgently and frequently.  Is he continent or incontinent?  Will he be trying to get up urgently to pee and risk a fall?  Could you overwhelm his prostate with the urine volume?  Bladder distension in men with enlarged prostates can also be catastrophic.

Another thought--certain meds can cause swelling, including blood pressure meds (Norvasc/amlodipine being a common offender), and some of the antipsychotics could as well.  Wise to check his med list before starting a new med to treat a side effect of another.  If he's in bed all the time, just lack of motion and/or a blood clot could also cause swelling.

I think I'd ask for a second opinion if I were you.  Good luck, let us know what happens.

Marta

Agree with M1. Placing an elderly PWD on Lasix is asking for bathroom disasters, either incontinence, if not already present, and/or falls due to the urgency to void. As long as he isn’t having trouble breathing and O2 sats  are at baseline, do not intervene or start a work up. Simple blood test called BNP can be done to determine whether CHF is present, if there is a reason to know. 

Do keep an eye on skin integrity of the swollen extremities, as the increased water pressure can cause skin ulcers/weeping from the inside. 

Iris L.

Is he getting too much salt in his diet?  Whenever I overindulge in salt, I get puffy.  Is he allowed to salt his own food?

Iris

Jo C.

What great input we get from our Physician and Nurse Practitioner Members; thank you so very much.  Good to have your supportive caring.

J.

ButterflyWings

Riajean- I’m sorry you and he are going through this. Knowing this is a one way disease with no pleasant off ramps, it still is tough to get past each speed bump unphased.

You got some great input from the medical pros here. I just wanted to share something this reminded me of. When I picked DH up from his respite stay, one thing I noticed almost immediately was super puffy feet and ankles. It alarmed me as that is definitely something new —only happened once before that I can recall in 20 years together. The MC didn’t have any ideas. Hadn’t noticed apparently. They sure hadn’t mentioned it to me in 10 days. I didn’t know what it meant or what to do about it.

When I arrived at home, his hospice nurse was able to confirm that his blood pressure was normal. Since we know he has no heart issues and supposedly he had not been given any new meds she encouraged me to just elevate his feet above heart level as often as he would cooperate, and just monitor. 

That is one really good thing about hospice. They have been super thorough and even aggressive in troubleshooting and finding the best natural, comfort-care answers to his varying symptoms. She suggested he may have been sitting a lot, that staff may have been limiting his liquid intake to minimize incontinence issues, and he possibly had too much salt for a few days. 

Swelling subsided in a couple of days. So, their guesses were apparently right. And I definitely would take the least invasive option again, even if things didn’t resolve on their own next time. At 6d, that’s just where we are. Wishing you both some good, palliative support and peace of mind. 

riajean

M1, OH MY GOD, you've scared the crap out of me!!  Since I didn't physically  check, I don't know how swollen he was.  And I'm sure it's bothering the nurse pa more.  I am always worried about meds with him because he took no more than an aspirin before he entered MC.  I don't mind them evaluating his heart - if they feel there's a need, but he's already incontinent - both #1 and 2 which shocked me this past visit and his room frequently smells like pee.  So now I'm going to write the head nurse pronto because I'm terrified!~~~

riajean

Marta, my husband isn't elderly.  He just turned 69 and before ALZ was HEALTHY.  I'm mortified at the decline in him since last September.  I'm no expert and I'm not in the health field, so I'm TRYING to TRUST health care facilitators who seem to know what they're doing and now I'm totally upset.  Tried to call.  The stupid woman hung up on me and I've just reported her to the director.  My night just got one hell of a lot worse.

Honestly, LSJA;LAIFJ;lfjLS

M1

Sorry riajean, I didn't mean to scare you!  I'd just be very gentle and very conservative in approaching it.  As Marta said, if he's not uncomfortable or short of breath, you may want to just leave well enough alone.  The test she mentioned--BNP--is a blood test that can evaluate for congestive heart failure.  But again, before any test, you have to think about what you would do with the information.  Would it make any difference?  Even with an echocardiogram, what would you do about any of it?

So many things, late in life, just devolve to very simple questions.  I've said this before in multiple places.  Is he comfortable?  If so, well and good.  If not, what can be done to make him comfortable?  Everything else about diagnosis and treatment falls away.  But that's hard to do sometimes.

Is hospice involved?  Maybe time for a consult?  

riajean

No hospice is not involved though I've requested he be evaluated.  Honestly, hard to control things in MC when I'm not there every second and I really need to be able to TRUST someone, don't you think?  I agree with leaving well enough alone.  After all there is a DNR on file and if he's comfortable, why do we need to keep throwing stuff at him.  It doesn't matter if I KNOW a diagnosis or not.  Not that there's anything to do but to be apprised of what's going on inside my poor husband.  If not, we're plodding along in the dark, happily smiling and that just doesn't feel right.  I don't intend to DO anything, just me here, making Superman live/death decisions without any nursing background.  What do you think I should do???

M1

I think you're thinking exactly right.  I think I would insist on the Hospice evaluation promptly, and say you don't want any interventions of any sort unless cleared through Hospice.  Period.  I'd be very firm about it.  I'd ask the memory care director if you can call yourself, if they seem to be dragging their feet--no reason for delay there.

You're not making Superman decisions honey, you're making common sense, loving, spousal decisions.  You know your spouse better than anyone else and what he would/wouldn't want.  You're on the right track.  Keep repeating that mantra:  is he comfortable?  That's the only important thing.

Marie58

riajean, my DH is in MC and as he got less and less active, we saw some swelling in his feet. He sat in his recliner a lot and often crossed his legs. And their diet is high is sodium in my opinion. The MC staff and hospice kept an eye on it and weren't ever too concerned. I always raised his legs on his recliner when I was there. I don't know if staff did that or how often. So maybe it's just from being less active?? DH had a huge decline in Nov and is bedbound now. The one positive is the swelling in his feet is gone since his legs are always elevated!! Sorry, gotta find some humor in all this. Hope it's nothing major with your DH.

loveskitties

The last time my father was in the hospital, the doctor had a long discussion with mother and I about doing tests.

He said there were lots of tests which could be run, but that would imply that we were agreeable to trying to treat whatever they found.

Since his advanced directive said no to treatments if he had a fatal condition (including dementia), we told the doctor no testing.  He put that in his file there and also had us notify the MC facility that father was not to be transported to hospital without our express authorization.