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.
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!
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."
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.
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!