u/mEp1973

Normally, I know the primary physician would recommend this, but my father's primary physician's office has been basically falling apart over the last year with multiple people quitting. The level of care from the staff (not the dr) has become really bad. I called Monday and explained the situation and they said someone will call back. Still nothing.

I have asked people I know for recommendations and they have no suggestions. I can choose based on online reviews, but that feels random. The home health agency my father had before also offers hospice, but I want to make sure I am getting him the best care. Any suggestions?

Thanks!

Context- my father is 93, congestive heart failure with rapid decline over the last week. Sleeping much more and eating/drinking much less.

I am the primary caregiver for my 93 year old father. We have had a system for the past 3 years or so where someone is with him at night, we do everything he needs around his house and all his shopping and we have just provided support when needed. He uses a walker but has been mobile and could take care of himself well enough to be released from home health care. I am able to work at his house so I will stay here for a week or so and observe his daily routines to make sure everything is good, and it has been. 2 weeks ago he was well enough to be here overnight and he was fine with it.

In the last 4 or 5 days, he has been in bed when I got here after work. He would get up and eat dinner but has been very quiet and would go back to bed. He said he felt ok, just tired. He has been struggling with some diarrhea and we have been tweaking his diet, pushing fluids and he takes Pepto Bismol. Today when we got here, he said he just wants to lie down and he isn't hungry. I said maybe we need to move his next 3 month follow up appt up and he said maybe if he feels worse. He has made it very clear all along that he does not want more medical tests, he doesn't want the colonoscopy they suggested and honestly he says he wishes he had died years ago, closer to 80.

He has already had prostate cancer, a pulmonary embolism and was diagnosed with congestive heart failure. His primary said he is basically off the charts of what they normally see, so he can kind of keep doing what he's doing. The last few days definitely seem different, like a pretty noticeable decline.

I realized I have watched 3 parents/in laws die of cancer etc. They were all within the same model of hospice care, diagnosis and prognosis. This is completely foreign to me- just seeing someone wind down at a very old age. And I don't feel like I know what I'm doing! . I do want to take him to his doctor if only to get a referral for home health or hospice care.

*while I was typing this, he got up and asked for some pepto bismol and baked fish 😊

My basic question, I guess, is when someone hasn't been officially diagnosed with anything, how do you know when you are providing more of an end-of-life care and no longer pushing the things we normally push for them to keep their strength up, stay hydrated, and all the things we as caregivers are generally monitoring?

My father is 92, homebound but mobile and my brother and I "share" caregiving. For the most part, this means our dad is alone during the day and one of us stays at night. This is almost always me (or my husband) here 5 nights a week and my brother here 2. When he plans to go out of town, he tells me "I will be gone from this date to this date." While he is gone, we handle all the care and spend every night apart. I work from home and my husband works for himself so we do see each other, but the day after day of being responsible for someone else is starting to take a toll. Right now, it is day 9 of the third long stretch this summer.

I scheduled my vacation from work back in January for the same week it is every year- 5 or so days around our wedding anniversary in late July. I told my brother weeks ago and he said no problem, he would cover it. Tonight he is saying everything is "up in the air" because one of his employees may or may not be leaving for boot camp that week. I am barely holding on as it is and that stretch off is a light at the end of a tunnel for me right now. I am NOT changing my plans and I told him if there are nights our dad is here alone, then it will have to be OK. I know hiring someone seems like the solution but there are financial concerns and he wouldn't qualify for his long term care insurance to kick in because he is too capable of daily activities.

I am so sick of relying on someone else who won't give me straight answers, seems completely resistant to committing to something if he feels pressured and very clearly will only do the barest minimum required and somehow justifies it in his mind. My husband is the absolute best and is 100% supportive and helpful but this grind is creating strain in our life together. There is resentment towards my siblings (2 in another state) for their lack of involvement and disregard for what others are doing. We are trying to be involved with our grandsons and feel pulled in all directions all the time. We are exhausted and frustrated and now as school is about to start back up, I got the list of all the things my brother has to juggle and all it tells me is that I have months and months ahead of trying to just get 2 regular nights off.

I am not willing to move my dad anywhere else and as I said, hiring care doesn't seem possible right now. So the only solution I see is to decide what my husband and I can do, tell my brother when we can't be here, and if he also can't be here, make sure my dad has his dinner and then rely on him to call us or use his medical alert system if he needs us. I feel so guilty doing that but it isn't even something **I** am doing. I am doing everything I can and then some. I feel like a terrible daughter leaving him here alone overnight even though he is fully capable of walking (with his walker), heating up food, taking care of bathroom needs etc. I think I will just have to be honest with my dad that I need regular nights off and my brother cannot provide that consistency.

Reading this back, I feel like it's clear that I am burnt out and so close to the situation that I am not seeing it clearly. Maybe I just need someone else to tell me I'm not selfish or neglectful if our dad is alone overnight. Or tell me if I am overlooking solutions. Or maybe I just needed to tell people who would know where I am coming from.

My father is 92, homebound but mobile and my brother and I "share" caregiving. For the most part, this means our dad is alone during the day and one of us stays at night. This is almost always me (or my husband) here 5 nights a week and my brother here 2. When he plans to go out of town, he tells me "I will be gone from this date to this date." While he is gone, we handle all the care and spend every night apart. I work from home and my husband works for himself so we do see each other, but the day after day of being responsible for someone else is starting to take a toll. Right now, it is day 9 of the third long stretch this summer.

I scheduled my vacation from work back in January for the same week it is every year- 5 or so days around our wedding anniversary in late July. I told my brother weeks ago and he said no problem, he would cover it. Tonight he is saying everything is "up in the air" because one of his employees may or may not be leaving for boot camp that week. I am barely holding on as it is and that stretch off is a light at the end of a tunnel for me right now. I am NOT changing my plans and I told him if there are nights our dad is here alone, then it will have to be OK. I know hiring someone seems like the solution but there are financial concerns and he wouldn't qualify for his long term care insurance to kick in because he is too capable of daily activities.

I am so sick of relying on someone else who won't give me straight answers, seems completely resistant to committing to something if he feels pressured and very clearly will only do the barest minimum required and somehow justifies it in his mind. My husband is the absolute best and is 100% supportive and helpful but this grind is creating strain in our life together. There is resentment towards my siblings (2 in another state) for their lack of involvement and disregard for what others are doing. We are trying to be involved with our grandsons and feel pulled in all directions all the time. We are exhausted and frustrated and now as school is about to start back up, I got the list of all the things my brother has to juggle and all it tells me is that I have months and months ahead of trying to just get 2 regular nights off.

I am not willing to move my dad anywhere else and as I said, hiring care doesn't seem possible right now. So the only solution I see is to decide what my husband and I can do, tell my brother when we can't be here, and if he also can't be here, make sure my dad has his dinner and then rely on him to call us or use his medical alert system if he needs us. I feel so guilty doing that but it isn't even something I am doing. I am doing everything I can and then some. I feel like a terrible daughter leaving him here alone overnight even though he is fully capable of walking (with his walker), heating up food, taking care of bathroom needs etc. I think I will just have to be honest with my dad that I need regular nights off and my brother cannot provide that consistency.

Reading this back, I feel like it's clear that I am burnt out and so close to the situation that I am not seeing it clearly. Maybe I just need someone else to tell me I'm not selfish or neglectful if our dad is alone overnight. Or tell me if I am overlooking solutions. Or maybe I just needed to tell people who would know where I am coming from.

On Memorial Day, I was walking down some stone steps into my back yard as I do almost every day. The next thing I knew, I felt myself land and somewhat bounce down a few steps. My husband turned around in shock to help me up and I told him I was just going to stay there for a minute. I mostly landed on my back, right butt cheek and elbow and I remembered my phone was in my back right pocket. I landed so hard I guess on the edge of a step right on my phone that it BENT my phone. I have a bruise that is basically solid black on my butt. No scrapes, didn't hit my head. I still went to get checked out yesterday and my nurse practitioner ordered xrays to make sure I didn't fracture/break my hip or pelvis 😳😳 I didn't even think a fall like this could cause that and I am fully hit with the "Ohhhhhh I can't do the same things I used to do without it being risky. So now I'm headed to get imaging done. We can't go backwards and that is hitting me hard today.

I was just watching the episode where Sookie is pregnant for the second time and has been hiding out at the Inn, eating Toblerone. Lorelai runs into Jackson and the baby one evening and Jackson says something about it just being a guys' night because Sookie is "working late". He says, "Come on , son. Time to go get you laid". That is so gross to me. I get the "guys' night" joke, but.....no. I keep thinking am I missing something that would make it less gross, like a play on words (like when people have leis and make that same dumb joke).

My father is 92 and still somewhat mobile. He's started sleeping more during the day and not being able to sleep at night. This evening he started telling me he feels like a burden and a nuisance. And that he's thinking of all the things he should have done and now time is running out. I automatically told him he isn't a burden or a nuisance and asked what he feels he should have done. He said "Take care of my family". I try to not be a dismissive person that just shoots down what someone is feeling, but reassuring him he isn't a burden and that he did take care of us felt like the only thing to say. Now I don't know if I handled it properly. I feel like I'm not validating how he feels but I don't know how. He seems to have too much time alone at night just thinking and I don't know how to help him.