mom's chf

[csutherland]

My 86-yr old mother is in a special needs unit of a very nice (expensive) assisted living facility. She has dementia/alzheimers.

About a year ago her primary care doctor noticed a heart murmur and sent her to a cardiologist. He said she has MV regurg. We discussed with the facility she was in at that time, as well as both doctors, that we couldn't imagine her having valve replacement at her age. She has gotten extremely confused just going to a doctor's office and we feel that a traumatic surgery like that would be cruel and unusual punishment, probably advancing her on to a nursing home for the rest of her life vs. where she is.

The cardio was doing nothing special for her at all so we opted to just let her primary care physician manage her meds. Her feet and ankles are very swollen; we've had to buy bigger shoes twice. Now we're having to buy bigger pants and tops because her middle is so swollen. I'm sure it's all due to the valve and CHF. He keeps adjusting her diuretic but she keeps gaining. She's still up and around and converses but at times seems droopy or maybe just depressed.

Do we need to get a different opinion and are we wrong to dismiss surgery so quickly? Neither doctor has tried to get us to change our minds. They seem to agree with our opinion on that.

Nancy, where are you? Any help here?

 

[Nancy]

Hi Celia-

I'm so sorry to hear about your mom's problem. The first thing that comes to mind is that perhaps her doctor is doing less than ordinary because of her age and the valve problem. I'm not trying to judge too harshly, but maybe you should run that thought by him and express that you want your mom to be as comfortable as possible.

Anyone who has CHF and is having swelling to the extent you are describing must be feeling horrible. In addition, that amount of fluid retention cuts down on the available oxygen to the brain, and people get very confused and have memory problems, and then start to go into a coma-like state. I've seen Joe very, very close to that condition.

I KNOW that the doctor can get rid of this fluid, it's really not a huge mystery. There are all kinds of diuretics including IV Lasix which can get it gone in a hurry. However, so much depends on her kidneys and her other possible conditions and whether they can do it fast, or do it slower. Even with a compromised valve, they should be able to keep her as comfortable as possible. She may have to have a catheter put in.

I think you have to have an honest pow-wow with the doc and let him know your feelings on the subject. He may be interpreting your wishes in a different way than you are intending.

Let me know how things go, Celia. God Bless.

 

[hensylee]

Thanks, Nancy. I am with you. Celia won't get this sort of advice from a physician.

 

[Nancy]

Another thought Celia. Is the facility your mom is in keeping her on a low sodium diet? You might also ask the doctor to prescribe that for her.

 

[Harpoon]

One more thing to add.

When I got into stage 4 CHF my kidneys shut down (actually, a LOT of my organs started shutting down) and the diuretics stopped working.


Check on the low sodium diet and INSIST upon it vigorously. You may also ask about fluid restrictions and exercise (light walking most likely) if she's sedentary most of the day.

You should also ask if bloodwork may be appropriate. Check for stuff like kidney and liver function, maybe even check on the endocrine system.

My thyroid was another organ that just tanked as I got closer to my VR in 2003 and I was on synthroid to boost my thyroid along with all the other crap I was on.


CHF shuts down EVERYTHING after a while if it's not treated well. If these other things haven't been checked, if she's on diuretics and she's STILL gaining water weight, there are LIFE THREATENING problems that need to be addressed right away.


By the way, my grandfather is 94 and just got home from a "step down care" facility after breaking his leg in a fall about a month ago. He's got some mild to moderate CHF which is almost "normal" for people his age and he's on a sodium restricted diet and a few different diuretics. He does really well, enough to be home on his own with my grandmother. I have an aunt and uncle that check on them just about daily. He had surgery to set his leg and they took care of some other problem as well (I can't recall what it was off-hand) and he did really well.


You don't "brush off" treatment for an elderly person just because they're old. There's a LOT ot be said for maintaining quality of life and what Nancy said is quite true, I know from personal experience.

I was MISERABLE when I was in CHF and I felt like I was bloated and almost drowning. I coughed almost incessantly and lost my voice. I could barely move from room to room. I was terrible. Your mom's mental status may truly be worsened by the excessive fluids in her system. It needs to be treated.

 

[bvdr]

It is so hard to know what is best to do when making decisions for elderly loved ones. My father died a few years ago and we never were faced with making decisions for him. He was of sound mind and set his own course of treatment. He had pulmonary fibrosis and out of that he developed heart problems and eventually lung cancer. He never took a cancer drug, radiation treatment, or had surgical intervention. He was 81 and once he knew what he was dealing with, chose to live his days on oxygen, for comfort, and with his family around him. My dad was very very loved and it tore us apart to just let him go but we supported him in his decision. He said for the sake of a few extra months he wasn't going to subject himself to being endlessly poked and prodded in the company of strangers.

My mom has severe Parkinson's and requires assistance with all her activities of daily living. She is very confused and, as much as I hate to admit it, very discontented with about everything in her life. She suffers from depression and does not tolerate medication very well. Some medications that she was given for her depression made her prone to violence and others made her confusion much worse. She gets toxic very easily and her kidney function is very poor. My sisters and I now, albeit very reluctantly, must make difficult decisions for her.

A few weeks ago I visited my mom for several days and we had a couple of those days in which her mind seemed clearer. We talked about end of life decisions such as living wills, funerals, and burials. A cousin of hers had just died and had had a service with immediate family only and it brought up the subject in a very natural context. My mom doesn't remember my dad's last few weeks, his dying, or his funeral. It was during a spell that she was mentally very out of it.

Sorry that this is getting so long but I too am faced with decisions on whether or not my mom should have major surgery. With her though it is hip rather than valve replacement surgery. She fell and broke a hip a couple of years ago and had a pin placed in one hip and ended in the hospital, then a psychiatric facility, then a nursing home, before going back into assisted living. She is in a very nice facility, perhaps similar to your mom's, Celia. The problem is she now has such severe pain from the hip she hadn't injured and we are facing what to do about it. She remembers nothing about her last hip surgery. She just says things like, "I know everyone says I had surgery and I have the scar, but I don't remember it".

It is a quality of life issue. She can't take pain meds except Tylenol and that helps very little. She is a very old 81. It is so complicated. Like you, I am concerned that she would never again be able to live in the nice place she is in and also a loss of the little independence she has left. But I also hate to see her in so much pain. She hates the thought of surgery and years ago declined the type of brain surgery done to relieve some patients of Parkinson's symptoms. But like I said, she really isn't competant to make informed decisions anymore. I am really praying for wisdom as I am at a complete loss on my own.

I hope a change in medications and diet have a positive effect on your mom's edema. I really do empathize with you and wish you and your mom my best.

 

[csutherland]

Thanks everyone for your input. Her appointment is Wed, and I'll go armed with these additional ideas.

Betty, we've already been through the hip thing. Daddy died of a stroke in April, '93; the following Thanksgiving Day Mom fell in an outbuilding on concrete on a very cold day (the 20's and spitting snow). We were planning to have our meal in the evening, but that morning my brother just "happened" to run over to check on something at the farm. He heard her yelling as he got out of his truck. She had been there for over an hour. She was a feisty, quick-on-her-feet woman who had run out without a coat to get something from the building. She simply tripped backward over a bucket. Her main concern was "will I be crippled?"

They pinned the hip and she went through the typical disorientation, etc of surgery. After a few months problems developed and a different doctor was consulted. He decided to remove the pin. Then 2 months later he did hip replacement. She's never been the same. Funny, she's also forgotten she had hip surgery. She keeps wondering why she limps. After all this in less than a year's time she started having more forgetfulness, etc. Four years ago she fell in her house, breaking her shoulder. She went straight to assisted living after that surgery. Only since April has she been in a "lock-up" facility. She started leaving the premises and could no longer stay in the place she had liked. I don't know if she'll ever adjust to this new place.

By the way, she was an avid walker until her feet got so swollen. She wore out numerous pairs of shoes walking around & around the building. They said she never sat down and they'd know when she started failing if she got lazy. Shortly after that the wandering started and she had to move.

Sorry for the length of this.

 

[bvdr]

Celia, it is sad isn't it. My mom started that wandering thing too. My dad started telling us years ago that he thought she was getting alzheimer's disease but what she actually ended up getting diagnosed with is Parkinsonian dementia. I guess it makes no difference what causes it because the result is the same. She was an enthusiastic traveler and it has posed an unexpected problem. She gets visitors almost everyday and often she has piles and piles of her belongings stuffed into paper bags, boxes, or totes. She has "packed for the trip".

I had a couple of other questions for you about your mom. Does she complain about pain in her legs from the swelling? And I know the edema is more than just in her legs but does she use the surgical or support stockings? If she has pain in her legs they could help a little.

 

[csutherland]

She hasn't told me that she has pain. Asking her a question is just a way of passing time and trying to make conversation. If she had terrible pain last night she wouldn't remember it this morning. The doctor asks her questions and there's no telling what she might way--she just makes something up to cover her confusion.

Mom always had delicate slim ankles and feet that she was proud of. Now she acts surprised that I think they are so swollen. They just look normal to her.

And about salt: They've restricted that and there are no shakers on the tables; however she once looked in the cupboards until she found a salt shaker! She always liked her food salty.