Hospice nurse indicated Mom may not be re-certified. What do I do?

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I haven't posted in a while...


My Mom (94 yo) is still having good days and bad. Though, her good days tend to be more challenging for me since she doesn't sit still and won't/can't listen (more of the same). She is incontinent (both bowel and bladder), but still goes into the bathroom out of habit. She continues to need assistance walking. She is eating three meals per day (though refused to eat dinner tonight), but the quantity is less. She does pocket some of her food. The only thing I noticed that was unusual for her was that over the past week, is that she started drinking more than usual. It is almost as if she would rather drink than eat. (Still chokes on water.)


One problem is that my middle brother -- the only able-bodied sibling that was able to help me care for Mom -- had a medical emergency last week. He hasn't been fully diagnosed yet, but it appears to be heart arrhythmia. He had an episode when he was near his basement steps and ended up falling down them. Fortunately, he only suffered from major hematomas (no broken bones). But, he can't help me with Mom any longer, or at least until the doctors figure out what is going on and the necessary treatment. (He has to wear a heart monitor for a month.) He used to at least stay with Mom during the day on Saturdays so that I could have a break.


My younger brother has the same heart problem now.


My sister, though she was not able to help due to her MS, broke her leg the other day. She is not home from the hospital yet, but I will not be able to help her because of being with Mom. I have only been able to feed her cat the past 2 days.


My older brother (the one who lives with Mom) has been saying that he doesn't expect to be around in September. (Does he know it is almost September???) But, he said that last year, too. He seems to be having good days, too. Although, his oncologist said the leukemia drug stopped working and that he didn't like the looks of the bone marrow test. He is still waiting for more test results. It has been over two weeks now....


I was feeling upset and resentful this past weekend because my son asked me to come to dinner, but I did not have anyone to stay with Mom. This week, I did hire a CNA to come to Mom's from 4:30 until 6:30, four days per week now so that I can leave Mom's early. I am hoping that will alleviate some of the stress. That doesn't mean this caregiver will be available for spur-of-the-moment things, though (or even other times besides what she was hired for. She does have other patients.). For those moments I relied on my middle brother. I can't do that now.


But, the other wrench in the stew came from the hospice nurse today. Mom has to be re-certified for hospice every 2 months now. The nurse was indicating that Mom does not appear to be showing a decline, therefore, she may not be re-certified. (I guess it is from all the good care I have given her -- keeping her safe from falling....) But, Mom was doing well (relatively speaking) when the nurse was there today; and Mom vitals have always been good. When the nurse practitioner came a few weeks ago, Mom was in bed. That nurse felt like Mom would be re-certified. But, from what I heard today, the decision is made by a team. I will know in 3 weeks.


So, if Mom is not certified, I told my older brother (the one who lives with Mom) that we are probably going to have to put her in a nursing home because we will lose the hospital bed, wheelchair, etc., and the support that I have (and I cannot continue to do what I do). (Yes, we can buy/rent our own equipment if we have the money....) But, that doesn't change the amount of time I would have to put in for the all over care. At least now, I get some help from hospice with bathing. It will be too costly to have private-pay caregivers for a long time (not knowing how long Mom will live).

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Map, there’s no guarantee that Mom will pass sooner if she goes to a nursing home. My mom lived in one for three and a half years.

Truthfully, isn’t that the best solution for your mom? And for the rest of your family? None of you are healthy and you all have e enough on your plates without worrying about your mother. If she were to go to a facility, she would have constant around the clock care. Your family wouldn’t need to worry about her care. Give it some consideration. You’re a good person and you deserve some peace.
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Reply to Ahmijoy
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I never understand why folks think that their elders will die sooner in a facility!

24/7 medical for someone with medical needs seems to me to be a pretty good thing. My mother lived for 4 1/2 years in her nursing home. They caught several bouts of pneumonia before "we" noticed anything "off". How did they know? They are medical professionals. It's what they do!
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Reply to BarbBrooklyn
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Mapotter Aug 22, 2018
Thanks, Barb. I have known several people who have told their children that if they went into a nursing home, they would die. It was their will, and they did (within a month). My uncle died of pneumonia and his daughter was told his organs were shutting down, so it wasn’t treated. That was in N.J. The truth was that had him sedated so much that he couldn’t get out of bed. The staff wouldn’t even let his sisters (my mom was one of them) go back to his room. They were told, “We’ll bring him out to you.” He was so drugged, he didn’t know them. So while there are good outcomes, there are also horror stories.

As as it relates to my Mom, she is a major fall risk, and The State of Maryland is a non-restraint State. That means NHs and AL facilities cannot use bed rails or wheelchair restraints. Mom will not stay in a chair or bed for long. With every fall, there is a decline.

When she was in a nursing home for 5 days respite care, they found her sitting on her floor one Sunday morning. No one knew how long she had been there. At home, I keep her walking, even though she needs assistance. They did not walk her in the nursing home even though I instructed them to. I was told, “She can’t walk.”

There are are definitely good homes and bad. But, I would have to find one that had Medicare beds available.. Who knows what kind of home we will get.. I would like to pass that job off to my siblings....
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I agree, its time to consider a NH. You can't do it all. Even when Mom is in a NH you can't be all to ur family either.

My husband has had AFib. First time 33 yrs ago. Next time, 23 yrs later, last time 4 yrs after that. They find no physical problem just happens. He takes a 80ml aspirin a day. There are meds for this to keep Heart in rhythm. Even defibulators for the worst. But, having AFib does not mean that brother can't watch Mom so you can have a break once its under control.
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Reply to JoAnn29
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I think keeping her home will further stress your well being. You are at the point of not being able to rely on anyone else. Some of us who are only children have that from the beginning. She might adapt to a facility. Can you be burdened further in all areas by keeping her home?
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Reply to Riverdale
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Well, it appears the NH idea is on hold... Because my mother cannot sign herself into a NH, and there is no medical POA, all the siblings have to agree on admitting her. My older brother does not seem to be on board. He said, "Well we have 3 weeks [until the decision is made about hospice]." I told him that is one thing [about losing the support], but the other thing is not having time to myself. To that, he didn't reply. He did ask how much we are paying for care. I told him this was a new agency and I don't know how much she is charging because she nickels and dimes her clients. (We are only doing 2 hours, 5 days per week for now.) I told him we paid $5K per month the last time for 5 12-hour shifts. We (collectively) do not have that kind of money to continue that type of coverage. (And Mom certainly doesn't.) I will fill out the paperwork for the NH anyway and get all the financial information together for Medicaid, but for the next several weeks at least be as it has been... and I am ready for a meltdown....
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Reply to Mapotter
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Map,
In my case, it was my mother OR me.

I'm an only child, so no support from anyone. I was awake most of the night with her and had to go to work 3 days a week. Hubs would "try" to take care of her (but she wouldn't let him). When I got back from work I was still "on duty". We hired a c/g four nights a week but I would still wake up. By the 3rd month, I was loosing it and hubs and I were arguing about most things. She was a 140 lb. toddler (stage 6 Alzheimer's). When the fecal incontinence started, that was the last straw. (Hubs SURE wasn't going to help with that!)

Placing her in a memory care facility has restored our marriage (it was HIS idea to move her in with us.) I now get a full night's sleep and not loose my mind on the same two questions 80 times a day.
She is getting wonderful care at the MC and I have no complaints. I'm a nurse and I realize what's important and what isn't. It doesn't matter if she has food spills on her pants or her hair may be slightly messy. They are taking care of the IMPORTANT things like telling me to buy a foam mattress due to pressure on her tailbone or buy nutritional drinks to have on hand when she decides not to eat for a couple of days.

Maybe you will see that keeping your mom home with you "without help" for an extended period of time will be your demise. 30% of c/g's die before the person they are caring for.

Check out whether you can get respite services in a board and care home. The cost is much less and there are fewer residents to care for. My local library had a booklet on all "Senior Options" behind the counter for free. If not, go to your local senior center. They probably would have listings for better respite caregivers too.

Good luck. Please take care of yourself and don't ignore your health. We don't want you as a statistic.
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Reply to SueC1957
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I said too much and it was cut off...

But...

I am feeling overwhelmed by all that is going on in my family. Plus, I know if Mom went into a nursing home, she would not live long. I would much rather have her die at home than go into a nursing home. But, what options to I have?? Mom does not appear to be in a hurry to check out...
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