Accepting aging and disability

Ruby Vee, BSN · Feb 20, 2015

I've had so many HH patients over the years who've refused transfer to a higher level of care and unsafely remain in their homes, often for extended periods. I get it, I do, but it's horrible on their kids who can't just say, "let the bastard rot", instead their lives are scrambled trying to raise their own kids, perhaps deal with their own or spouse's health problems, work and run back and forth trying to deal with an unresolvable parental situation, unless mom has means and then they can throw money at it.

You said what I wanted to say, but didn't for fear of offending some previous posters. Having been in the position of being the daughter to parents who WEREN'T managing at home as well as they thought they were, I'm of the opinion that it's selfish to put it all on the kids. I lived a thousand miles away and was flying home every six weeks to deal with my parents' situation. My sister was flying home every six weeks, too, so that someone was there for a week every three weeks. It got expensive (for me, my sister is rolling in it). It became time consuming. My management was understanding, but scheduling me to have a week off every six weeks was hard on them and someone had to pick up the slack. Things got neglected at home . . . I just didn't have TIME for it. My husband and I didn't have any time together for a few years. And my folks had no money to throw at the situation.

My father could have made decisions about my mother's care, but it was a difficult decision and as he did his whole life, he abdicated the making of a difficult decision to someone else -- to my sister and me. When he got too sick to look out for my mother, clearly something had to be done. My sister and I traded off visiting every two weeks -- one week with my folks, one week at home where I worked 72 hours to try to keep my job and my mortgage paid.

Your refusal to go to a higher level of care can ruin your kids' lives -- they can lose jobs and marriages, they can lose sight of what their own children are up to until the child is in trouble. They can lose their health trying to keep up with their own lives and still take care of you. If you have the money to throw at the problem, OK. If you don't have any kids whose lives your decisions can ruin, go for it. But if you refuse to go to a higher level of care "because your kids will take care of you," you're being selfish.

OCNRN63, RN · Feb 20, 2015

I don't have children, and I already have my plans for that time, should I live long enough to see it.

Jules A, MSN · Feb 20, 2015

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Your refusal to go to a higher level of care can ruin your kids' lives -- they can lose jobs and marriages, they can lose sight of what their own children are up to until the child is in trouble. They can lose their health trying to keep up with their own lives and still take care of you. If you have the money to throw at the problem, OK. If you don't have any kids whose lives your decisions can ruin, go for it. But if you refuse to go to a higher level of care "because your kids will take care of you," you're being selfish.

RubyVee I can't imagine how difficult that must have been on so many levels, financially, physically, emotionally. In recent years it seems as if APS is more willing to become involved, at least in the cases I see, and they can expedite the process to appropriate care.

My Mom is one who has all docs in place and swears she will off herself prior to being incapacitated but if something changes cognitively and she is unwilling to leave her home I'm going to have to have her declared incompetent and sent to a skilled nursing facility where she will be cared for safely. She knows this and is on board but it is still sad to have to think that this is the likely end result of a productive, independent life.

Libby1987 · Feb 20, 2015

What I tell my spouses and families who have been trying to provide 24 hr care to their loved one with progressive disease/symptoms is that it doesn't have to be all or nothing. You can have the LTC staff do the heavy lifting so to speak and allow you as the PCG to get adequate rest and some personal time and still participate in the care and nurturing during the day.

For those that have been doing the 24/7 care, driving a short distance and spending a few hrs a day to help with meals and supplement personal care plus whatever socializing/stimulation is appropriate after consecutive adequate sleep and rest takes a whole lot less energy than what they have been doing.

That doesn't mean I hope to be placed but the patient isn't my only client.

classicdame, MSN, EdD · Feb 20, 2015

Statistically, only about 5% of the population ends up in a nursing home, which is why I do not buy the insurance for that.I might do like my Mom and Dad---they decided to quit taking their meds and let nature take its course. Neither was in pain, so that was an option for them. Both died of MI

Libby1987 · Feb 20, 2015

Statistically, only about 5% of the population ends up in a nursing home, which is why I do not buy the insurance for that.I might do like my Mom and Dad---they decided to quit taking their meds and let nature take its course. Neither was in pain, so that was an option for them. Both died of MI

Would you mind giving more detail? (Hope it's okay to ask)

I like the idea but I've thought it would risk CVA.

Jules A, MSN · Feb 20, 2015

In the source I found the figures for people in the US varied based on age:

"In 2004, about 1.5 million people lived innursing homes in the U.S. Most residents areelderly: 88% of nursing home residents are 65 orolder, and 45% are 85 or older. Yet only 2% ofAmericans age 65 to 84 and 14% of Americansage 85 or older live in nursing homes."

From AARP: http://assets.aarp.org/rgcenter/il/fs10r_homes.pdf

"A relatively small number (1.5 million) and percentage (3.6%) of the 65+ population in 2011 lived ininstitutional settings such as nursing homes (1.3 million). However, the percentage increases dramaticallywith age, ranging (in 2011) from 1% for persons 65-74 years to 3% for persons 75-84 years and 11% forpersons 85+"

From AOA:

http://www.aoa.gov/Aging_Statistics/Profile/2012/docs/2012profile.pdf

dream'n, BSN, RN · Feb 20, 2015

Well this thread has made me determined to have a talk with my kids very soon. I want to die at home and I DON'T want them dedicating themselves to taking care of me. If I get demented, just let me be to leave the stove on and burn down the house or wander off somewhere and get hit by a car. If I get pneumonia, get me HH only for pain and anxiety meds and a little O2. If I start with CVA or MI symptoms don't take me to a hospital whatever you do. Just let me have quality of life with my freedom; not quantity just for the sake of it.

That's what I want, but how to get the kids to agree? Sure they'll say ok now, but if/when it happens I know the guilt and difficulty families face by not "doing everything." I wouldn't want them to worry, but they would. Guess I'm saying I don't know what the answer is. This whole quandary is so depressing.

Jules A, MSN · Feb 20, 2015

Well this thread has made me determined to have a talk with my kids very soon. .

This made my day! I personally think it is important that we discuss this and make our wishes known both verbally and in writing. Is there one of your kids or someone else you trust to carry out your wishes who you could make your healthcare advocate? Having documentation is crucial but the tough part is going to be allowing you to remain in the home if, God forbid, you become demented. Perhaps having funds available to hire live-in staff to monitor you so that you don't burn the house down or wander into traffic. Refusing medical treatment is one thing but allowing someone to die from injury or possibly injuring others in the process is another.