We fail our old people and it's heartbreaking

Nurses General Nursing

Published

I recently had a patient who was admitted because a neighbor contacted the police when they realized she was living at home with a few pets in a house with no heat or running water. She's been admitted with a minor medical diagnosis, but it's been passed in report that we're just waiting on long-term care placement for her. She's in her mid 80's, has been living independently for many years, and she's pretty clear that she's going back to her house with her pets, because no one has told her otherwise. I've worked with many dementia patients over the years, even the ones that were pretty sneaky about it, and I honestly didn't see indications of dementia. She had some trouble with phone numbers, and these days no one has a phone book, so she was in the process of tracking some people down to help with the heat and water, according to her, before the neighbor called the police. If we had a system in place where elderly people could live in their home, have someone just check in on them for the basics, and they could retain some independence, that would be so beneficial. Now she'll end up in long-term care, potentially funded by the state depending on her financial situation, and she's one of those people that I'm pretty sure will just will herself to die in an institutional setting. And she's going to be one of the combative aggressive ones, too. That's the report I got from the previous nurse, but it's all about approach with her. If she feels empowered to make decisions, she's fine. As soon as she feels control has been taken away, she digs right in and will get feisty, and I don't really blame her. So what's the worst possible thing we could do for her? Long-term care placement. Breaks my heart to think that she'll never be home with her pets again and all she wanted all night was her dog on her bed. Sometimes I hate getting old.

Specializes in New Critical care NP, Critical care, Med-surg, LTC.

Thanks to everyone that has taken the time to respond. The program in Pennsylvania sounds wonderful, I wish it were available here!! The problem for my patient now is that she is alert, oriented, and STUBBORN. Day and evening shift have dubbed her "evil", because she's not compliant with things offered. Doesn't want new clothes ("I arrived in these clothes, and I'll go home in these clothes"), refuses skin checks, won't allow an IV, etc. All valid objections in an alert and oriented person, and we've had a great relationship on nights. But again, I have more time and she can talk to me for 20 minutes if she wants, while the other shifts don't have that time. Her dog was put in a kennel, I was able to call the police last night and get information on how she's doing. I'm going to stay tomorrow and talk with the case manager and hospitalist. No one's going to speak up for her because she's alienated them. I talked with her this morning before I left and told her she needs to play the game and be nice to people. They hold all the cards right now and if she continues to be rude to staff, she'll just delay her discharge. I hope I can talk them into letting her go home tomorrow. She's been making calls to follow up on the heat and it should be back on.

Oh, and the neighbor has been checking on her for years and often cares for her pets. He was just concerned about her lack of heat and didn't know how to help.

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Specializes in LTC, Rehab.

I doubt if she will, but I hope somehow she ends up back home. As some others have said, maybe there's some way home health can help.

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This issue is very dear to my heart and I wish nurses took a bigger role in advocating for home health care. Getting old doesn't have to mean losing everything, but it does when you live in a society where people don't care for each other.

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Specializes in Critical Care.
I'm with you on the LTC insurance thing. Cripes, is that expensive! I'm pretty sure that most people that can easily afford LTC insurance until they actually need to use it could also afford to just save that money for their own LTC needs and pay for care when the time comes. Then when the money runs out, which unless that person is extremely well off it will run out state funding for care comes into play.

I see this frequently at work. An elderly person that is admitted for LTC, which in this case means the rest of your life placement in a nursing home has money and is private pay. Then the money starts to run out and they have to "spend down" what little they have left to qualify for Medicaid. Then comes the shopping spree, a new TV for their room, a new computer to keep in touch with friends and family, one lady prepaid for flower deliveries for 3 years just to spend down the money enough to qualify for assistance.

It is sad that unless you are wealthy enough to either pay for LTC insurance or self insure or have family that can care for you, when the time comes you will lose all your assets including your home before you receive govt assistance. The poor without assets automatically qualify for medicaid.

It is hard to accept for those of us that have saved for retirement and have a home we love and sacrificed to pay for that all can be taken away if we become ill and are unable to care for ourselves. Funny that Trump and the republicans have no trouble cutting taxes for the rich and especially cutting the estate taxes of the rich so they can pass on their wealth and treasures to their family, yet the middle class will most likely lose all their wealth and homes in the end.

Given that maybe the spendthrifts who don't save and live for today are the smart ones! In a country that doesn't believe national healthcare is a right, things aren't going to change. I guess you have to make your own decision whether to save, buy a house, and pay for LTC insurance if you can.

A lot depends on the state you live in. So many state laws and programs either help or hurt a person. The PACE program in PA sounds wonderful and some states too are developing programs to keep people in their home simply because it saves medicaid and therefore the state money. But even when these programs exist many times there isn't adequate govt funding so there may be a long waiting list and the person may not live long enough to be accepted into the program. Sometimes there are community non profits that offer Senior Care assistance to the low income seniors.

So often, it comes down to does the city or state you live in offer assistance. My grandma was fortunate to qualify for a county program that paid for her prescriptions before medicare offered prescription coverage. My state will pay family members who care for a frail loved one. My parents put their house in a trust so the state could not take their house if they needed a nursing home. There was a 5 year wait before the trust would be finalized or the govt could still take the house. I don't know what it is now. So many state programs require you to be virtually penniless before they will offer any aid. It is a shame because then if you are allowed to stay in your home what money do you have when the furnace etc inevitably dies?

Assisted living seems to be only available to the rich as it costs thousands of dollars a month in rent. Also once the money runs out you are evicted. I don't know what the answer is.

It is heartbreaking to think of people losing their homes, but especially losing their pets. I hope a friend or neighbor was able to take her pets in so they didn't end up in a shelter where they might be euthanized. If someone was able to take her pets in, maybe they could visit her and bring the pets to cheer her up if she ends up in long term care.

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Specializes in Clinical Research, Outpt Women's Health.

I am living this nightmare right now and let me tell you it is hell.

My parents worked and saved, but all the money is tied up in their home.

4 months ago my mom was completely independent and my dads caregiver as he has severe arthritis with limited mobility. They would never discuss their finances because they "were fine and totally with it and capable of handling our affairs.

In 4 months my mother has become almost bed bound. Really that part happened within the last 6 weeks. Also somewhat confused now for the last 3 weeks. She has been diagnosed with a progressive neurodegenerative disease. The diagnosis is made by exclusion so you cannot even be 100% sure.

After the hospital she went to rehab. She is a 2 person plus sling assist to get out of bed to the toilet or WC. She is failing to make progress so rehab is kicking her out. Dad is trying to find an assisted living that offers transfer and ADL/toileting assistance. If we can find one that will even be capable staffing wise it will be about 10k per month. The house will be sold to pay for this until the money runs out. If he cannot find one then he insists on taking her home. This will be an absolute disaster. Without selling the house he wont have the money to pay for in home aids and since a 2 person transfer would need 2. This would cost about 20k per month which is unsustainable.

Mom really needs nursing home level care. The only nursing home in their area is 12k a month and dad refuses to put her there. To get medicaid he would have to line in the house which he cannot do alone. He needs assisted living without mom as caregiver.

Meanwhile mom had 1/2 the finances and all bill paying on her computer and no longer knows the passwords or how to use a computer.

My sibling and I both live in other states and have fulltime jobs and mortgages etc. so we cannot move. Try getting new jobs out in the sticks in your mid and late 50's. It would be financial ruin for both of us.

Every agency I contact tries, but really has no assistance at the level required.

It is just a soul sucking mess for all involved and their are no easy answers or good solutions. No one knows how long she may live, how fast things will progress, or even if this is truly the correct diagnosis although she has had wonderful care at a major university hospital with very good specialists.

I am just putting this out there because some comments on this thread seem to make it sound so easy to avoid this type of situation and it is not that simple.

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That is just so very sad, how painful.

My mother's greatest fear was that something like this would happen. When she became ill with widely metastasized cancer and learned she had 2 weeks to live, it was almost a relief.

It is just so sad that this happened quickly. Your parents wouldn't discuss their finances because there was "no need".

We don't perceive how quickly things can change.

It is one thing to require a few hours a week of help, it is a completely different matter not to be safe alone.

What I find in my LTC work is that people have deficits that they are able to cover up quite well in conversation.

Staff insist the pt is fully alert and oriented, but when I do a MOCA exam( made famous recently by Trump passing it), I find a different story.

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Specializes in Practice educator.

We've had a similar experience with our Grandad, we had to get the family to work together to pool our resources to be able to fund his care. The social workers had zero interest in helping us out.

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Specializes in Psych, Addictions, SOL (Student of Life).

I wish people would quit talking about how expensive long term care insurance is. It has already been established that if one buys in early it costs about $30.00 a month or a dollar a day. Skip on fancy coffee or fast food meal a week and it's paid for. Well worth the sacrifice I say. Quit blaming all this on the government or expecting the tax payer to pick up the cost of care. Be proactive. My family was a modest middle income family with 5 kids in it. My mom and dad lived within their means and managed to send all 5 kids to college and retire with over a million dollars in the bank which pretty much paid for my mother's long term care, People have to start taking responsibility for themselves early in their lives. At 55 I have two college degrees and have never taken out a student loan. I have never owned a brand new car, but I now own two houses and my debt is still quite manageable. My son will go to college without accruing debt as well because we have taught him how to live within his means. Oh by the way we do support local charitable endeavors as well. The American mindset both for liberals and conservatives can be pretty selfish and indulgent at times. If each person just took a little personal responsibility we would end up in these messes.

Hppy

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Specializes in Travel, Home Health, Med-Surg.

I definitely agree that people should be more responsible with their finances and not rely on gov funds but I don't think it is fair to assume that in every situation people will be able to afford LTC insurance. I am also tired of everyone expecting the gov (which is of course taxpayer money!) to solve their problems, but I also think that the gov wastes way too much money which could be used to help these elderly/disabled folks. I just heard that the gov (Obama admin) spent $700,000 to "research" whether the first man on the moon said 'One step for mankind', or 'A step for mankind', and we all know their are countless other stories like this over all gov. admin, it is ridiculous! Consider how much money we (as a country) spend on social programs and the waste within them, consider how much we spend for health care, schooling etc. for illegal immigrants, maybe we should have a real discussion about where our money is going without everyone calling "racist" when it is not, it is a discussion about where finite monies will go. I personally feel that our own citizens should be taken care of first, after all they are the ones who have paid into the system their whole lives, I hate to hear stories of how they are denied assistance over others (illegal or not) who are abusing the system.

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Specializes in New Critical care NP, Critical care, Med-surg, LTC.
I wish people would quit talking about how expensive long term care insurance is. It has already been established that if one buys in early it costs about $30.00 a month or a dollar a day. Skip on fancy coffee or fast food meal a week and it's paid for. Well worth the sacrifice I say. Quit blaming all this on the government or expecting the tax payer to pick up the cost of care. Be proactive. My family was a modest middle income family with 5 kids in it. My mom and dad lived within their means and managed to send all 5 kids to college and retire with over a million dollars in the bank which pretty much paid for my mother's long term care, People have to start taking responsibility for themselves early in their lives. At 55 I have two college degrees and have never taken out a student loan. I have never owned a brand new car, but I now own two houses and my debt is still quite manageable. My son will go to college without accruing debt as well because we have taught him how to live within his means. Oh by the way we do support local charitable endeavors as well. The American mindset both for liberals and conservatives can be pretty selfish and indulgent at times. If each person just took a little personal responsibility we would end up in these messes.

Hppy

My initial post was intended to be pointed at the failing of a system that would remove a person from their home and potentially institutionalize them without real cause. She is stubborn and can be cranky, and without a real medical need for long term care she may be sent to a facility just because she won't get along with people. I'm sure there are many other people living in communities just like her and it's unfortunate that some will end of in hospitals for minor reasons and maybe lose their freedom because of it. I guess it came across as expecting the government to step in and help, but that wasn't really my goal.

I'm sorry to read the stories of those of you dealing with ailing family members and the transitions in care. I wish you all the best. After my years of working in long term care, I know that some people can thrive in that setting, but others will certainly find the institutionalization a miserable existence, they will become combative, end up being medicated for psychiatric indications and lose any resemblance to the normal life they once lived. It can be a fulfilling place to work, and at the same time it can be heart wrenching.

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She can go home with home care and if she has Medicaid and in Indiana it will pay long term as long as she needs her medications set up, that would give her an aide also if she needs assistance with bathing, meals on wheels or equivalent. She has not been ruled incompetent by a judge she can go home if she desires. (if they make her sign AMA then this may cause a problem getting HHC) There are all kinds of energy assistance programs, her real need lies in someone to act on her behalf and help her stand up for herself. She needs to find someone she trusts to be POA and get her back home. and provide oversight.

It is easier for hospitals to send her to another facility than to her home. If she ends up at the nursing home she can contact her ombudsman to get her out of the jam. Unfortunately in her pursuit of independence she got herself in trouble. So many people wait to late and end up in a mess. I have seen it dozens of times over the years.

Services are out there. You just have to know the resources.

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Time for a family meeting. When people must depend on others to get their needs met then they have to compromise or suffer the consequences. Dad has to reveal all his assets with you and your sister and let you be involved in decision making. You are correct in saying that AL is not the place. It is assisted, not total care, she needs total care.

If they want to stay in the home they must apply for Medicaid and get Medicaid covered HHC even then you will have to hire a private caregiver 24 hours a day. Can you and your sister cover that?

If not then they need to go to the nursing home or stay home and deteriorate till they are forced to go in a week or two. This is how it will end up unfortunately.

Sometimes a family member will take a patient in to have their own room and board paid for. But that usually doesn't turn out very well or doesn't last when they realize the level of care that is needed. One person can use a lift but it is not easy.

Looks like Mom will be in bed quite a bit which leads to all sorts of problems.

I wish you the best of luck. Go with Dad to see an attorney who specializes in elder care and see what advise they give. Good luck.

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