lifegood Asked August 2012

Any experience with Congestive Heart Failure and quality of life/time frame?

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Hi! I posted another topic recently explaining that I'm engaged to a man that is the caregiver for his mother. To make a long story short, I have no idea how much longer our situation could stay as it is, and I haven't gotten any idea from doctors how things could decline with her diseases or how much time she has left. I have suggested Hospice to my fiance (the situation is very hard for him, as many of you know from experience), but she doesn't have the diagnosis of "6 months to live" that Hospice seems to require in their state...and he won't ask for it because she is not prepared for that (she is very afraid to die).

I feel selfish to think of life being better once she passes, but I do wonder about it all the time. our lives are on hold right now. I can't find much info. online so I thought those of you with experience with CHF might be able to give me an idea.

His mom is 78 and was a smoker. She has Congestive Heart Failure that was diagnosed 2 years ago. She also has scarring of the lungs. She is on oxygen 24/7 and spends her days sitting in a chair watching tv. Once or twice a week he takes her out. She can walk but getting across a room is taxing and can lead to shortness of breath. She is on a ton of meds (I don't even know what) and recently he is worried because she chooses to get up less (walking to the kitchen is taxing enough to ask him now to get her drink or food for her rather than getting up).

I have read people can live decades with CHF , and I've read elderly patients usually die within 5 years of diagnosis. Has anyone experienced this disease and seen the decline? Can it get really, really bad or do the organs usually just give out? I am so afraid she will just decline to a state of not being able to do anything for herself and he refuses to put her in any type of facility.

Hearing others' experiences would really give me some insight to the progression of CHF...right now I have no idea what to expect. Thanks for giving me a place to ask questions I feel embarassed to ask anywhere else.

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hickybottom Sep 2014
my mom has been with hospice about two weeks she is in a hopsital bed can t get up to good enought to get to bed side potty..this week she has been seeing a snake and she said she threw in the trash and we had to get the trash out... is this gettin close to the end..she has chf and heart failure 30% or less heart functions and of oxygen 24 -7...appieate little bit and sleeps off and on still in her right mind at times repeats alot...me and sister doing our best to care for her very stressfull...........
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This has been so helpful. My father-in-law is 92, suffering from CGH, Parkinson, dementia, and several other issues. He has been hospitalized twice since April with fluid build up. My mother-in-law finally agreed to let him go into rehab after the last bout. She is 86 and wearing out from his constant care. It is so hard to watch and we can help only so much since we live an hour away. I was also looking for a "how long " and see that it is very different for each person. We will have to wait on God's timing. Thanks for sharing!
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Sooozi Sep 2012
Another thought that often comes to mind is that ... we will be like this some day. That helps me to think about what my mom might like ... company or to be left alone some times, the fun of still being independent and able to do some things or help from others... and although I have no idea what the right answer is... how do I set my life up now so that I will not be such an overwhelming worry to my children that my mom is to me. I admire my mom's desire to live independently, but it it only independent of formal assisted living. It is highly dependent on me.... which I know is my priority and I will miss her when she is gone, but I also think there has to be a better way when I'm hopefully as old as she, not to be such a huge stressor on my sons. It is an inevitable transition for all of us. My father said the best thing to do is to live healthfully and then just drop dead in old age. Which he basically did at age 87. So, we all have to take good care of ourselves today! Saying a prayer for all the caregivers.... take good care of yourself right now!
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weathernut Sep 2012
So glad I was able to help lifegood! Of course sorry to hear she has become more ill. An unfortunate part of it all. Pnemonia is awful and so uncomfortable. Poor lady. My dad had that in May along with his heartattack and got through it all. It is all between them and the fellow upstairs, people tell me. If she gets better perhaps he may see the difficulty but if he chooses to help at home hang in there. It is a tough thing as you can see to watch your parent go through this. When my mom suddenly passed my life was forever changed. Keep that in mind as you watch this play out. The one who bore you and cared for you is now frail and helpless. It is all very confusing and scary. I will be thinking of you both and wishing you peace through your journey.
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Sooozi Sep 2012
Thank you for asking this question. I have the same question and am not sure I can be of help except to say I'm in a similar situation, caring for my mother who has CHF. The thing I'm observing is that there have been multiple visits to the hospital during which I was sure she would not survive, and suddenly she was resilient and she came home. She even snuck out and got a one hour driving test (they passed her for neighborhood, day time driving) and was told her mind was sharp for a 92 year old. So, I find that I leave her house and fear that she is suffering. She paddles around her house, eats a few things and wakes up the next day feeling good and is productive. I wake up that day WORRIED!!! but no need. Until she calls to say she needs me there right away. I'm always on pins and needles. I feel like it is such a blessing and a challenge to live this way. I am on this site looking for answers too. How do you retain your relationships with spouses, children, friends? How do you keep a career/job? How do you take good care of your own health, when you never really know if you will be available to show up for those things, because the mom you love is unexpectedly in the hospital, and then she is out, and recovering and getting stronger and living nicely and then she falls ill again... It's a long, blessed time... with unexpected challenges. I think what I'm concluding is that we need to build our lives to be ultimately flexible, so that we can be there for our moms... and yet we keep our health and our marriages and our work... for the future.
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lifegood Sep 2012
Hi weathernut! Thank you for such a nice reply. You sound like a wonderful person. I look at my fiance and he's my hero for all he does and suffers through - but I see it affect every aspect of his life as well and sometimes I think it's so unfair. My mother has said to me "I'm going in a home if I get old or sick - your life is not for that.".....still, I would do everything I could to not let that happen.

A few weeks ago his mother had to be taken to the hospital by ambulance. She had fluid in her lungs which has now been diagnosed as pneumonia. once in the hospital she caught a bacterial colon infection. She's just miserable and so uncomfortable. I hate seeing her suffer and I hate seeing my fiance have to go through this and watch it. I hate to say it, but I think she has very little time left and I'm feeling like she won't be coming home again after I saw her last night. It's so sad. You never know how long these chapters will last. I spent so long looking for an answer - like "people with X disease live an average of X months/years" to put it in perspective mentally so I could deal with it, and be sure my fiance would be able to make it through with his own health being affected (the stress in incredible, as you know).

I'm happy your dad is in a facility getting the care he needs, and you can visit and have a bit of your own space and life back. There is only so much one person can do before they are affected so much that there are two people with serious health problems (mental and physical).

Your post helped. Thank you for taking the time to write it, and I'm sorry if i'm rambling!
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weathernut Sep 2012
My father has advanced heart disease and is confined to bed. I kept my father home for as long as my body could handle it. For me 3 years was way too long. My husband suffered for it. However from experience, nothing you say will change your fiance's mind until he is ready. There is a guilt you get that you are charged with caring for your parent. There are good facilities out there sometimes difficult to find but they are out there. From someone who put their life on hold I must say I might not do that again. 6 mos turned in to years, after a year we were in a position where it was bed baths and changing etc for the next 2 and a half until mid December last year my body and mental state hit a brick wall. Some are much stronger and can hang in there depends on the person.

Sorry if I gave too much info but you have to make your choice, my dad is still with me going on 4 years, he had a massive heart attack in May, the doctors said that was it but he got through and seems better in a lot of ways. Dementia is a daily issue as well. Depends on what you think you can handle. Do not feel bad for asking these questions you are part of this also. One thing I have found since finding a place for my dad is that I can come everyday for an hour or two and spend quality time with my dad, hug him more and talk to him more instead of doing the physical care and then be too tired to do anything else. I hope this helps.
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jeannegibbs Aug 2012
As a caregiver, I sometimes wish I had a way of predicting how long various symptoms or conditions would last. When a new caregiver joins my local support group, often questions about "how long" are foremost on their minds.

Like you, we have practical reasons for wishing to know. Should I put in a walk-in tub? That is a big expense -- worth it if LO will be able to use it, but what if next month his body develops the rigidity common to his condition and he can no longer get into and sit in the tub? How long does he have in his current state? Putting in a handicap ramp would be worthwhile if I am going to be able to keep him at home. How realistic is that? How long do we have until his needs will outpace my abilities?

We all want a timeline. (At least sometimes. Sometimes we focus on today and don't ask about tomorrow.)

Timelines are few and far between. Each person is unique. Even if you found a stat that said, "The average life expectancy for a person diaganosed with CHF after age 70 is 37.5 months" (which you won't find -- I just made that up), your future MIL is not "average." She might live for 9 months or 120 months.

And even if you could nail the CHF timeline perfectly, there is no guarantee that she won't develop dementia next month, completely changing the nature of the care she needs.

I think Paula is right. "You'll have to accept that it's an ongoing situation, with no fixed end in sight."
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paula2024 Aug 2012
Lifegood,
I would have to strongly caution against putting your lives on hold, as you say you're doing. From all I've read, people can live many years with CHF, it doesn't seem to be a critical situation. My mother, who is 87, hadn't been to a doctor in ten years but was recently diagnosed with it in April after a fall sent her to the emergency room. The fall itself caused no injury, but I'd guess that she's had the CHF since she was at least 78—she's had shortness of breath and general weakness for that long, or longer.

Taking care of his mother personally seems to be a firm decision your finace has made, for whatever reasons. Doing more for the patient can lead, of course, to the patient doing less for herself if that's how she's constituted. My mother has fought to do as much for herself as possible right up to the present moment. It's a matter of personality type. There have been times when I'd have much preferred to get her something from the refrigerator rather than having to clean it off the kitchen floor. :(

My thought is that you have to be prepared to live in the situation you're faced with right now. You can't base your future happiness on a future that is entirely uncertainly. Either you must live with your finance's decision, or strongly reconsider whether this is the right situation for you at this time. He may be the right person, but you have to accept the whole package. Which includes an ailing mother-in-law for an indeterminate amount of time. If you can't accept that, it would be a very uncomfortable way to live. However, if he really is the one for you, you'll find a way to make it work. But you'll have to accept that it's an ongoing situation, with no fixed end in sight. Good luck to you; there is no easy answer!
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