My Mom has heart failure and CHF. Anyone been in a situation like mine?

JeanneGibbs ~
Your response was very informative. Thank you! My condolences to your husband's passing. What a rough road.

I will check out Mayo's website. Dad's confusion seems to have exacerbated over the past three days. This afternoon he was actually better though. It just comes on suddenly from time to time but yes, it's when he's tired. He's the most cognitive in the mornings. And mostly, in the later afternoon is when we see errors. I am curious as to how your husband's Lewy Body was diagnosed, if you'd care to share.

Thank you again. And many blessings.

BarbBrooklyn,
Thank you for your response. He has not been diagnosed with vascular dementia. Several doctors we've taken him to have not seemed to care much because he's 98 years old. I hate that attitude but not much can be done about it. His potassium level came out a bit high, so we've cut out his banana per day he was consuming. A nurse told me that was a good idea. He was checked for a UTI last weekend and it was negative.

19Caregiver52 and JulieMS54 I am so sorry you are in this position. In the natural order of things, parents die before we do. We expect that. But to watch them slowly deteriorate is agonizing indeed!. Cyber hugs to you both.

Caregiver, look up High Potassium on the Mayo Clinic website. There is a brief explanation there. I suggest you call the clinic and leave a message for the doctor asking about that level and if the test should be redone. That website also has an explanation of CHF.

My husband dealt with CHF for many years (30?). Its symptoms were mostly respiratory (shortness of breath, etc.). It did not cause confusion. He did develop Lewy Body Dementia and that, of course, made him very confused. He was fairly high functioning but occasionally he wouldn't know where some room was. This was mostly when he was very tired. And sometimes he'd walk around the house just looking at things, apparently trying to get oriented. Once he was standing in front of my closet, door open. I laughingly asked if he was thinking of borrowing a blouse. His answer: "I'm just seeing what is what." I think he was trying to cure his own disorientation.

Being confused as to time or place is very common in dementia. (Where is the bathroom? Should I wear winter clothes or shorts today?) When the confusion and other symptoms of dementia are consistently worse at a certain time of the day, that is called sundowning. In your dad's case, Caregiver, it might be that the confusion starts up when he is particularly tired. Does he have other symptoms of dementia? How is he the rest of the day?

You can look up sundowning for suggestions such as changing the lighting, changing bedtime, planning activities for that time of day ... environmental things that MIGHT help. I don't think there is any medical treatment specifically for sundowning.

Julie you are certainly in the very difficult position of respecting your father's wishes even though you might wish different decisions for him. I hope that my children are that respectful of me, when my time comes. Has he considered hospice? He would not need to go to a clinic anymore and they would take him off any meds that aren't helping his comfort level. They would also have other medications on hand to help with pain or anxiety, as needed. My husband was on hospice for 5 weeks in our home. It was terrible knowing that he was dying, but the hospice service brought comfort to both of us.

Best wishes for comfort for both of you.

19Caregiver52 - Hi, my father also has CHF with type2 insulin diabetes. He is dying. The hospital saved his life last November and he was able to come home on New Years eve. But last month it was deja vu again. His legs are very swollen and have sores and are leaking fluid. They need dressing by the clinic twice a week. He falls asleep often, can't remember somethings but is very clued up with regards to his medication and blood testing- vascular dementia -. He doesn't bother going to the Gp or heart failure nurse and has reduced his diuretics himself cos he pee's too much. There's no point telling him what to do cos he still has his own mind with regards to his health and it's his choice what he decides to do. He's 85 and really has no quality of life. DNR was signed off on his last visit to hospital. This is a very long illness progressively getting worse. Unpleasant to witness for us & unpleasant to live with for him.

I seem to recall that potassium is an electrolyte; imbalance in electrolyes can wreak havoc in anyone.

Have you talked to the dr. about the potassium level? Has he been diagnosed with vascular dementia?

Sometimes the sort of confusion and agitation you describe can be caused by a Urinary Tract Infection.

Any change in mental status should be reported to his doctor, asap.

My heart goes out to all of you above, who have been through the agonizing situation of a parent failing. It's a hard road.

Dad has CHF & COPD. He started failing about four months ago and went downhill pretty quickly. I asked for a CBC to be done two weeks ago and we learned he has anemia. B-12 shots were given everyday (be an in-home health nurse), with three more being given this next week and then one per month thereafter.

He has gotten better physically and now his blood oxygenation is staying stable once again. But now we're witnessing terrible confusion (sundowners?) in the late afternoon until bedtime. Last night, he told me he didn't know where the bathroom was and I had to lead him over to the door. Is this sundowner confusion? Does it accompany CHF? And, if so, at what stage?

His blood panel showed he was high in potassium. The doctor hasn't mentioned any problem with that, nor any remedy. Is high potassium dangerous in this situation? What can we do about it?

Thank you so much for any answers you can give.

please try to get her to walk. That is the one thing, aside from the hawthorne herb that has helped more than anything else. It really helps the heart to pump out the fluid. Her cardiologist confirmed that this is the best medicine.

My mom just came home from the hospital. She has chf, diabetes, high blood pressure. They have told me her right side of the heart is very weak. I have been in and out the hospital many, many times with my mom over the last 10 years. Now they tell me she is deterating. Mom finally made the choice of Dnr. Thank god she has made that decision because I know its one I did not want to make for her. She also told me she just wants to be home and comfortable. I am able to be with her 24/7 thanks to my hardworking husband. The doctor at the hospital told me I will know when to call hospice in. We have been home for a week now and it looks like she is retaining water again. I feel like im in your shoes walking right next to you. I wish I had a sister to help im decision making. My brother is worthless! Does anybody have any suggestions for us? Thanks and God Bless.

My mom just came home from the hospital. She has chf, diabetes, high blood pressure. They have told me her right side of the heart is very weak. I have been in and out the hospital many, many times with my mom over the last 10 years. Now they tell me she is deterating. Mom finally made the choice of Dnr. Thank god she has made that decision because I know its one I did not want to make for her. She also told me she just wants to be home and comfortable. I am able to be with her 24/7 thanks to my hardworking husband. The doctor at the hospital told me I will know when to call hospice in. We have been home for a week now and it looks like she is retaining water again. I feel like im in your shoes walking right next to you. I wish I had a sister to help im decision making. My brother is worthless! Does anybody have any suggestions for us? Thanks and God Bless.

I give my mother herbs. She had CHF, but it was treated with dieuretics and she now still has atrial fibulation and a leaky valve. Last time she had an ultrasound, they said her heart was stronger. Now it's her lungs that are weak. She seems to be helped by hawthorne. It is an herb that strengthens the heart beat. Ask your doctor before giving anything. My mother is 103 yo.

My mother 89, is in hospital now with chronic heart failure and COPD. She is slowly dying. She has said she does not want anything that will prolong her life. So they are just keeping her comfortable. Her Picc line is blocked and they can't find a usable vein. She has an infection and they don't know why. I am strangely calm and don't know why. Bev

Yes, that on top of his Parkinson's. We are battling with edema in his legs, can't have salt, and fluid retention. It's a daily fight. He has a stiff heart because he is not able to move all the time. It's a hard fight and on top of that he fights me to have anyone in to help. It's hard. In the past ten years I have helped my mom who passed from breast cancer then right into dads care because of Parkinson's. I am scared everyday but we hang in there and take it one day at a time. We have a vna monitoring system which helps monitor his vitals and they call when something is off. My grandfather also passed from chf. Hang in there! Definetly not easy to watch someone close fade...

We are all here with you for support. This is hard.

Yes, and it is never easy seeing someone you love die slowly. All you can do is love her until the end and do your grieving as long as YOU need to. God Bless.

Part two. The diuretics are really key. We found that her LASic wasn't effective and was changed in the hospital, then it was a real balancing act with pulling the fluid and the right amount of potassium. At one point she had a potassium overload which is critical. We corrected that then really monitored and balanced everything. Her legs returned to what they were when she was young, we hadn't seen her ankles in years. She lost a lot of weight and went down to 100. But she was getting stronger. Her heart eventually gave way. I was lucky to have built a great relationship with her primary who worked with me over the phone to balance everything. Lots of blood work. Ask God for strength, you will not be turned away.

We went through this with my mother last year. It is very difficult and I am sorry for you to have to witness. My advice is to find a visiting nurse team that specializes in chf. We live near Phila and found that the Univ. of Penn has a pen at home care team that were remarkable in the care of my mom. She too had an enlarged heart and had a bad mitral valve which was replaced better ...but still a serious problem. The Penn team controlled her chf by vigilant monitoring, She did die, but it was a peaceful death after one of her very best weeks. She was not on Hospice but had a dnr. We helped her situation by careful monitoring of salt and also potassium, her weight and Bp were called into a monitoring center daily, she also had physical therapy come to the house. It is a very sad and difficult time. My best advice is to cherish every moment.

Yes my mother had the same complaint. In hospital for 2 weeks in March came home and was continually unwell until being hospitalised again in August. She lasted another 12 days still,in hospital and eventually died of a perforated bowel. She was 91.

I could imagine how you feel. I lost my grandmom 103 years old almost last March 2013. It feels as though it just happened. It is the most painful experience one can go through. I blame myself. I blame God. I wrote a long comment about her here. It will affect me forever. In my case I had three deaths in my family, one after the other after the other, and then I had to deal with a divorce, and then my mother broke her hips. At the same time I almost got killed on the New Jersey turnpike by some guy who claimed he fell asleep. These experiences just make you look at life differently. I am still in shock. I dont have anyone except for my mom with her diabetes which is getting me scared, but she is still okay so far. God bless your mom. You need all your family for support. You cannot be alone. I was alone and aghh it was bad. God bless you both.

Nicky, show and tell your mom how much you love her. Write or call family and tell them that time is short and yes, feel free to cry.

Mom's had congestive heart failure for about ten years. It's a progressive disease, as you know, so it just keeps marching forward. Every time she went into the hospital, they'd change all her diuretics and she'd be a mess.

Right now, mom's condition is in the WTH mode. Her feet and legs are quick to tell the tale on her fluid retention; about a week ago, she seemed to be getting dehydrated again. I cut her diuretics in half for five days. It didn't seem to be making any difference, so the doctor stopped them completely. It's been a week, and still no fluid retention. The doctor doesn't understand it.

Mom is weak...still eating fairly okay...but not herself. I'm forcing bananas and raisins on her in case her potassium level is down, That's how she's acting. I just spoke to the doctor today, and he said to continue holding her diuretics until we see any slight fluid build-up in her ankles. Then one pill every other day.

Mom's on palliative care . . . I elected not to go into hospice yet with her. But the doctor is in no hurry to do tests, etc. I'm with him really. She has moderate dementia, can't walk without a walker/gait belt/and me. Suddenly getting sundowner's much worse.

If these diuretic adjustments don't pull her out? Then it's time to go home.

As to your loved one, I'd suspect dehydration. It's also my understanding that, when they drain fluids, it causes a massive loss of potassium. (I'm not sure about this...Pam above would know.) Both dehydration and low potassium could cause the symptoms you're seeing.

You're probably smarter than I am -- calling hospice in...

thanks i needed to hear that from the both of you she did everything headstone to the clothes she will be wearing.. today my sister asked her was she excited to got oheaven she said yes to see my lord...and to see your mama..so she is ready

Glad you called Hospice. Ask the nurse all kinds of questions, she will answer what she can. How long? Once she stops eating and drinking, maybe a week. You are not there yet. Keep her comfortable. Tell the cousins to visit, she would like that. Write the obit, find a nice picture and meet with a funeral director so things are in place

You don't have to stay strong. This is your mom and she's dying. It's ok to cry and be upset.

My dad had CHF and would get liters and liters of fluid pulled off of him. He was down to 10% ejection fraction and he lived on that for quite a while. The heart will protect itself if it has to and will create little arteries from its own tissue for the blood to get through. The heart can't go on like this forever but it does buy the person some time.

However, draining all of that fluid was very difficult on my dad and was hard on his body. The more they pulled off the more they needed to pull off and at one point, as his medical POA, I said "enough". My brother agreed. And we went to hospice just like you.

30% ejection fraction is really pretty good. Your mom may have more time than you think but calling hospice was totally appropriate. By the time our loved ones are at the point of needing hospice we're usually at the point of needing someone else to come in and take over the care and that's what hospice does. It's such a wonderful service.

Cry your heart out, hicky, if you need to. It's a sad situation.