Nursing Home not always an option (power of attorney, Medicare, child, parent)

[Escort Rider]

Originally Posted by springazure

I'm the OP of this thread. 1st let me say.... I completely understand that there are multiple possible situations for everybody. Not EVERYBODY has the same identical situation as me, or others. HOWEVER.... with that said....

All too often I hear of an adult child say "It CAN'T be done." When in truth... They don't WANT to do it. I'm not saying that is the case with EVERYBODY, but I've witnessed tooooooo many times, when that was the case. It continues to amaze me, to what degree people can convince themselves of such, just because they don't want to lose the lifestyle they feel they are entitled to. Again.... there are situations where it CAN'T be done, but sometimes, they just don't WANT to do it! Flame Away!

You are playing word games in the above post. "Can't" and "Don't want to" are not separate categories but are on a continuum. At what point on the continuum do things reach the limit of human endurance? There is no answer to that question because some people can endure more before they crack. If we "can" avoid being stressed into ill health and various kinds of break-downs, does this indicate self-indulgence? Not in my book.
And for those with children young enough to still live at home, even if they are teenagers who can fix their own meals and the like, are not those children and their welfare the most important thing in life to their parents? Their welfare should properly be placed above that of their aging grandparent, regardless of the guilt problems of their own mother, because they (the children) are not yet independent adults and deserve a reasonably sane environment in which to grow up. Having a mother stressed into near dysfunctionality because she is caring for her own mother 24/7 is not fair to them.

What is it you are complaining about, exactly? That some people are not willing to make the sacrifices you did? If so, you deserve to be flammed. Don't get me wrong; if you feel you made the right decision, then I have nothing but admiration for you. But why are you trying to generalize your personal decision onto others? And don't claim you are not being judgemental, because this sentence of yours gives you away: "...just because they don't want to loose the lifestyle they feel they are entitled to." Are you jealous and resentful that you sacrificed yourself and others did not? It is one thing to warn us about the situation that your mother faced, and that you elected to face with her, and it is quite another thing to talk about people as you did in your post above.

[Robyn55]

Originally Posted by springazure

I'm the OP of this thread.

1st let me say.... I completely understand that there are multiple possible situations for everybody. Not EVERYBODY has the same identical situation as me, or others. HOWEVER.... with that said....

All too often I hear of an adult child say "It CAN'T be done." When in truth... They don't WANT to do it.

I'm not saying that is the case with EVERYBODY, but I've witnessed tooooooo many times, when that was the case. It continues to amaze me, to what degree people can convince themselves of such, just because they don't want to lose the lifestyle they feel they are entitled to.

Again.... there are situations where it CAN'T be done, but sometimes, they just don't WANT to do it!

Flame Away!

Hand up. I don't want to. Not in a live in my house 24/7 sense. OTOH - all of our parents had/have enough money to pay for skilled care when necessary. And on the third hand - not being willing to be a 24/7 caregiver doesn't mean I'm not willing to do anything. There is frequently a middle ground. And this is definitely not a one size fits all situation IMO. Robyn

[ifa]

Originally Posted by Robyn55

Hand up. I don't want to. Not in a live in my house 24/7 sense. OTOH - all of our parents had/have enough money to pay for skilled care when necessary. And on the third hand - not being willing to be a 24/7 caregiver doesn't mean I'm not willing to do anything. There is frequently a middle ground. And this is definitely not a one size fits all situation IMO. Robyn

Some people go all the way over the edge in one direction or the other. Some sacrifice their life savings and any hope of ever retiring, their physical and mental health, their social lives, romantic relationships, and hobbies. Everything is thrown away, because they feel it's unethical to have their parent cared for by professional caregivers. Others are able to forget they even have a parent. They feel no guilt and they leave all the work and worries to siblings, or throw their parent into a nursing home that resembles a medieval dungeon. Then go merrily on with their life, as though the parent were already dead.

To me, both of these extremes are tragic. A woman who goes all-out and sacrifices her life is, it could be said, self-destructive almost to the point of suicide. I know someone like that. She feels that the caregiving will kill her, and that bothers her because then what will happen to her mother? I am serious -- she doesn't care if she dies, because her life is so miserable. But she knows her sisters would put their mother in a nursing home, and that's the only reason she wants to live.

Where is the sanity in that?

There are no good solutions, and the best we can do is find a compromise. I think if you find a good assisted living or nursing home, and you visit frequently and make your parent feel loved, that is not negligence. Your parent doesn't really care if the everyday caregiving chores are done by you or by professionals. What they care about is knowing you love them.

[mlb]

Before making statements about what people should and should not do.... might I suggest a visit to the nursing homes/assisted living centers in your communities? I suggest volunteering.

It will open your eyes like never before.

When we were looking for my mother's placement - WITH my mother - we took her to every nursing facility in town..... we saw everything from "elder warehousing" where you'd walk into a room with 15 elderly persons starring at a blaring television - most of them needing attention/diapering/feeding/etc... None of them were in restraints (states have laws against that) - but they were clearly unable to walk/move themselves - and some were awaiting attention. The staffing was horrific at that home. The television was their "babysitter". I cried after that experience.

To what my mother thought was the creme of the crop - a virtual luxury hotel/center.....with fine dining, chandeliers, beautiful furniture, music in the air, staff scurrying around doing their jobs.... My mother loved this one in particular. We ask at one such place - what they do for medical emergencies?

They dial 9-1-1. Seriously.

They had no staff trained for medical emergencies. No nursing on hand. It was a corporate "healthcare" disaster in the making. We steered mom away from that place - tho she really wanted to stay there.

We ended up in a church-owned well staffed (medically) assisted living/nursing home. This, of course, after she had been kicked out of an assisted living center that boasted responsible staffing and provided nothing of the sort.

Apparently, assisted living centers are big business. We're all getting old and somebody wants to cash in on it. Just remember that.

[Robyn55]

Once again - I'll mention that there are big differences in terms of senior living facilities. From independent living - to assisted living - to skilled nursing. And some kinds of places that exist in states other than Florida that we don't have here (California seems to have places for dementia patients - 3 hots and a cot and a single CNA or similar during the day).

And to MLB - you haven't been specific in discussing medical emergencies and 911. My FIL was in a a SNF. Skilled nursing and even a doctor in house during business hours 5 days a week. But - when he had acute episodes of CHF - and - on one occasion - a double pneumothorax - it was 911 and off to the hospital. There is only so much that can be done medically outside of a hospital. What were your expectations? Robyn

[springazure]

Originally Posted by Escort Rider

You are playing word games in the above post. "Can't" and "Don't want to" are not separate categories but are on a continuum. At what point on the continuum do things reach the limit of human endurance? There is no answer to that question because some people can endure more before they crack. If we "can" avoid being stressed into ill health and various kinds of break-downs, does this indicate self-indulgence? Not in my book.
And for those with children young enough to still live at home, even if they are teenagers who can fix their own meals and the like, are not those children and their welfare the most important thing in life to their parents? Their welfare should properly be placed above that of their aging grandparent, regardless of the guilt problems of their own mother, because they (the children) are not yet independent adults and deserve a reasonably sane environment in which to grow up. Having a mother stressed into near dysfunctionality because she is caring for her own mother 24/7 is not fair to them.

What is it you are complaining about, exactly? That some people are not willing to make the sacrifices you did? If so, you deserve to be flammed. Don't get me wrong; if you feel you made the right decision, then I have nothing but admiration for you. But why are you trying to generalize your personal decision onto others? And don't claim you are not being judgemental, because this sentence of yours gives you away: "...just because they don't want to loose the lifestyle they feel they are entitled to." Are you jealous and resentful that you sacrificed yourself and others did not? It is one thing to warn us about the situation that your mother faced, and that you elected to face with her, and it is quite another thing to talk about people as you did in your post above.

When I made the decision to move my Mother in with me and become her 24/7 caregiver, I had plenty of relatives and friends telling me I was WRONG! WHY was I wrong? Because my Mother needed skilled care.

Seriously, my Mother did not need "skilled care". She needed a 24/7 babysitter (among other things). I cooked her meals, washed her clothes. I cleaned the house, gave her a shower, dressed her, combed her hair and brushed her teeth. I made sure she got her pills, as required per doctors orders. I transferred her from wheelchair to bed, etc (at her heaviest she was 130 lbs, and NOT completely immobile so I was able to manage it)

I kept a daily journal of her pills, meals, moods, behavior.

Seriously... there wasn't one thing I did for her that required skilled care. Everything I did for her, I did for my kids, when they were young. I did for myself, or I did being a spouse (cooking, laundry, cleaning).

Keep in mind, there were 2 Nursing Homes that insisted she required a geriatric psych ward. Yet.... there I was taking care of her. Now mind you..... she was NOT aggressive/combative with me. (for the most part she wasn't) At those moments she was, I learned some really bizarre tricks to alleviate that problem.

The last 6 wks of her life was a different story. She was having multiple mini-strokes weekly. Basically, her brain was starting to short circuit FAST! They forewarned me, she wouldn't last long, and that's when I started hiring Private Pay Nurses to care for her at the house. Then it DID require 2 people to transfer her. Eventually transfers were not possible and bed sores became a problem. During those last few months of her life, having Nurses at the house made ME feel better, and it did give me the needed break, because her last few months of care did indeed becoming overwhelming.

Again.... I totally realize that not everybody's situation was like mine. Yet, some people use the term "skilled care" so loosely, it irks me.

[springazure]

Originally Posted by mlb

Before making statements about what people should and should not do.... might I suggest a visit to the nursing homes/assisted living centers in your communities? I suggest volunteering.

It will open your eyes like never before.

When we were looking for my mother's placement - WITH my mother - we took her to every nursing facility in town..... we saw everything from "elder warehousing" where you'd walk into a room with 15 elderly persons starring at a blaring television - most of them needing attention/diapering/feeding/etc... None of them were in restraints (states have laws against that) - but they were clearly unable to walk/move themselves - and some were awaiting attention. The staffing was horrific at that home. The television was their "babysitter". I cried after that experience.

This is the only type of Nursing Home available in my rural region. Hence, I made the decision to care for her, myself!

[Andrew10573]

30 years ago my grandmother was in the same situation as my mother -- fractured hip/dementia.

Her children fled to Florida leaving my grandmother to my recently widowed mother.

So it's nothing new or recent.

My mother's sister was a nun and through connections and pull got her into a "good" nursing home which translated into a demented woman drugged up and strapped into a bed.

I do remember the resentment my mother had towards her selfish in-laws.

Fact is anyone who abadons a child or elderly parent to an institution puts that family member at risk for abuse.

In reading the reactive postings, I suspect some people have residual guilt and are doing an unconvincing job of justifying selfish behavior.

At least I have the satisfaction of knowing I protected my mother.

In reading life expectancy averages for the United States, I note that the average American lives into the mid-70s.

Assuming a person retires at 65/66, they can expect 10 years to get by.

And I would prefer the cancer/hospice route to the dementia/nursing home scenario.

Experience has taught me that once a person gets sick and dependent, "family" and "friends" run away.

[cokatie]

Originally Posted by Escort Rider

Although you could well be right, what you wrote above surprised me. I had always thought of that older generation as the people who basically had it good. They were the ones who ended up with paid-off houses. And as a whole, they were not in the habit of loading up the credit cards, having been raised in a more frugal manner before there was such a thing as credit cards. Of course I concede that many individuals may fit the pattern you have described, but I am talking about that generation as a whole. Are you sure you are not over-generalizing based on your personal knowledge of relatives and/or acquaintances who happened to have planned poorly for retirement? Any further light you can shed on the question would be appreciated; I do have an open mind on the question, and I admit that I could be the one over-generalizing from people I know. (I am 67).

My sincere apologies for my delay in responding to you. As I had mentioned, I am the caregiver for my two 88 year old parents, so my time is not always my own! I want you to know that I definitely do not find your post judgemental at all. I take it as you wrote it - simply looking for more clarification. I'm also going to make some other general comments in response to the other posts that have since followed mine - so apologies if this too long for some of you!

You are very correct in the broad assumption that, on the whole, this "Greatest Generation" did indeed tend to pay off their houses and completely shy away from the use of credit cards. That is also the case with both my own parents and with the people I was referring to. I posted based on my own personal knowledge of what is going on around me with my own family, my friends, former work colleagues (from Wall Street, actually), people I have been speaking to during the frequent trips to medical facilities with my parents, etc. I come from a traditional blue-collar, working-class background. I would generalize further by calling both myself and my parents members of the middle-class. I'm sure you would agree that the bulk of the population would fall into the middle-class category more so than the wealthy category.

While there is no credit card debt (although I have to watch my Dad like a hawk!!!), there are monthly expenses which must be paid for out of their monthly income from SS and a Teamsters pension. Supplemental medical insurance, out-of-pocket pharmaceutical costs, normal house and car insurance, normal gas & electricity & phone & cable & food. There are also costs associated with the general overall maintenance of a house.

In a down real estate market which we are currently experiencing (and which I personally believe will linger for longer than people are expecting), their house would be worth about $300-350k. Here's a bit of a laugh - they purchased it for $36k! The house has been "in trust" to me since 1996. We arranged this after a close work friend of mine related her personal story of her elderly Mom's worsening condition and how her assets were slowly depleted until Medicade finally stepped in. My parents and I arranged for a "Living Trust". Although the house is legally in my name, they can always feel legally secure that they will never be put out of their own home in their lifetime. It only becomes physically my property upon their death.

In addition to the house, my parents have a grand total of $70k in savings. To them, that is a fortune. To us, well, we know it's not much. They have no life insurance policy. They have no plot for their burial. They have no pre-arranged funeral plan. In fairness to my Mom, they DID have a plot at one time, but when my Dad's Father died suddenly, my Granny was told there was no available plots at the cemetery where the rest of the family was buried (I believe this is becoming more common in urban areas). This distressed her so much that my Mom offered up the plot she had pre-purchased for her and my Dad. This was about 25 years ago.

So, in answer to your original question, yes, my parent's are pretty OK. But if they suddenly had to pay for in-house nursing care for my Mom (who has Alzheimers), and a person to cook and clean for them, and pay their bills, and get them to their doctor's appointments, and to organize their medication - they would be drained financially. And as others have mentioned here: I couldn't even be sure that the person(s) hired to do these tasks would do them with proper care, fiscal responsibility, kindness, patience, etc. Therefore, I choose to do it myself.

As I said in my OP, this is on me. It's my decision and in NO WAY do I judge others who handle this in a different way. I'm no hero, I'm no angel, I'm not a better child to my parents than someone who chooses a Nursing Home. I'm just me and I'm just dealing with my personal situation. I have never liked Nursing Homes. Again, that's just me. I also will state again that I do not think that my parents (and the parents of other baby boomers around me) planned properly. I just don't think they put a lot of thought into the topic. I think it is my generation that is realizing that age brings not only physical limitations (which I think the prior generation understood) but MENTAL limitations (which they never thought would happen to them). The generation PRIOR to them simply died of old age. Via heart attack, stroke, heart failure, organ failure, cancer. THEIR generation is NOT being allowed to die. New medical advances are keeping them alive longer - but the medical advances are not being made at a fast enough pace in the area of the brain.

Medical science does not know how to cure Alzheimers or dementia. They don't even know what causes it. That is my beef. My 88 year old Dad got stage 3A lung cancer last year. He's fine now. Out mowing the lawn a few times a week. Shoveling the snow during the winter. But he is from a generation where the women did the cooking, the housework, and paid the bills. He has NO clue how to do those things and no interest in learning. Therefore, this needs to be done by someone.

My Mom who has NO physical issue is the problem. The reason I couldn't respond to this post earlier is because in the past month she has started hallucinating. She is wandering outside in her nightie looking for her old boyfriend who is here to marry her and take her back to Scotland. Other times she is convinved she is dead so is up and down the stairs, opening every door looking for the priest who is coming to say the rosary. She is wanting to get up to the chapel where she is convinced they are having her funeral mass. She gets SO agiated that her BP sky-rockets. She says horrible things to me and my father when we won't check the doors and has threatened to slap me if I don't do as I'm told. She has had a brain scan which shows no stroke or bleeding in the brain. She has had urine and blood tests. Nothing. No one can figure out what happened. Tell me: How does ANYONE plan for this? Do any of you reading this forsee this happening to you? She didn't. I certainly didn't.

What would happen if she was in a nursing home? They would give her pills to knock her out and keep her quiet and in one place. What do I do differently? Well, I don't give her the pills. I sit with her. I try to reason with her. I calm her. I talk about "the old days". I play old songs and get her to sing along. I take her up to the chapel so we can sit quiety and she can do her rosary. I make sure she is getting dressed and is eating properly. But that is because I love her. I don't think you can pay someone to simply provide love. It's the love that keeps her grounded in reality.

I quit my job to look after my parents. That's on me. I am still attempting to maintain my condo which a VERY costly monthly tick. Again, my choice. I have gone through my savings and have now started taking early withdrawal from my 401k. My decision. I personally don't know how long my parents will live - nor would I hazard a guess. My Mom's family (of 6) are all dead. My Dad (1 of 10) still has 7 siblings and his mother lived past 100 (as did her sisters and her mother). In the end, will I get the money from the sale of their house? Sure. Will it replace the money I took out of my retirement account and savings? Yeah, a good portion of it - but not 100%. Trust me - I won't be making money out of this.

What it's doing to me emotionally is FAR worse than what it's doing to me financially. But, it's also making me smarter about my future. The decision to marry, a decision to have children - they all come at some cost, don't they? Well, so does the decision on how you are going to look after your parents. It's all about what YOU can personally live with and deal with. It's all about the relationship you had with your parents growing up. It is definitely an emotionally complex issue. In the same way trying to make a marriage work that all your friends are telling you to walk away from. Or dealing with a child that is addicted to drugs or hanging with the wrong crowd. We all take a different approach based on our life experience.

All I know is this: I have had to go through this. I truly don't wish this on anyone - but the sad fact is that it IS something that a lot of people are going to have to deal with. I simply want this made easier for the rest of you when the time DOES come. I want there to be more research done on the brain - more funding. I want there to be more focus by our elected officials on the growing social problems this is causing. I would like to see a government program where people like me can withdraw from our retirement funds without the current hefty penalty (perhaps to be allowed to re-deposit the funds when estates are settled). I want there to be more awareness in our workplaces so that people don't have to leave jobs with no hope of ever getting another one. I would like to see more outreach programs (church or government) for caregivers to better educate us and to maybe allow a little break now and again. I would like to see community boards that maintain a list of local nursing homes or home help organizations and police them via ratings on a regular basis so that we could have some good, clear data in front of us to help make the tough decisions.

Honestly? I just want this to be easier to go through for you than it has been for me. Sorry I took so long to say it!

[Robyn55]

Originally Posted by springazure

When I made the decision to move my Mother in with me and become her 24/7 caregiver, I had plenty of relatives and friends telling me I was WRONG! WHY was I wrong? Because my Mother needed skilled care.

Seriously, my Mother did not need "skilled care". She needed a 24/7 babysitter (among other things). I cooked her meals, washed her clothes. I cleaned the house, gave her a shower, dressed her, combed her hair and brushed her teeth. I made sure she got her pills, as required per doctors orders. I transferred her from wheelchair to bed, etc (at her heaviest she was 130 lbs, and NOT completely immobile so I was able to manage it)

I kept a daily journal of her pills, meals, moods, behavior.

Seriously... there wasn't one thing I did for her that required skilled care. Everything I did for her, I did for my kids, when they were young. I did for myself, or I did being a spouse (cooking, laundry, cleaning).

Keep in mind, there were 2 Nursing Homes that insisted she required a geriatric psych ward. Yet.... there I was taking care of her. Now mind you..... she was NOT aggressive/combative with me. (for the most part she wasn't) At those moments she was, I learned some really bizarre tricks to alleviate that problem.

The last 6 wks of her life was a different story. She was having multiple mini-strokes weekly. Basically, her brain was starting to short circuit FAST! They forewarned me, she wouldn't last long, and that's when I started hiring Private Pay Nurses to care for her at the house. Then it DID require 2 people to transfer her. Eventually transfers were not possible and bed sores became a problem. During those last few months of her life, having Nurses at the house made ME feel better, and it did give me the needed break, because her last few months of care did indeed becoming overwhelming.

Again.... I totally realize that not everybody's situation was like mine. Yet, some people use the term "skilled care" so loosely, it irks me.

I'm not sure there's an official definition of skilled nursing care - but I am pretty sure there are things that can only be done in SNFs - at least here in Florida. Like administering meds to a patient who can't take them by him/herself. I don't think ALFs are allowed to administer meds. And I do think one needs skills to care for people who can no longer care for themselves - although the skills may not necessarily be medical skills. Like bathing someone can be pretty dangerous (to both parties involved) if the caregiver doesn't know what he or she is doing. Feeding someone too. And something as simple as clipping toe nails can cause big problems if not done correctly (my FIL's SNF had a podiatrist come in to do that - it's a pretty specialized task). Robyn