Nursing Home not always an option (senior, grandmother, mother, Florida)

[Andrew10573]

Long Term Care Insurance is full of pitfalls, caveats and is very expensive for the average person.

http://www.latimes.com/business/la-fi-longterm4nov04,1,810669.story?page=1&coll=la-headlines-business

There is no substitute for one-on-one caring from a family member which, given the fragmented nature of our society and the breakdown of the cohesive nuclear family, is increasingly rare.

In my personal experience, the average person dies in their 70s of some type of cancer, can get hospice which is paid for by Medicare -- a scenario I would prefer for myself!

[mlb]

Originally Posted by Andrew10573

Long Term Care Insurance is full of pitfalls, caveats and is very expensive for the average person.

There is no substitute for one-on-one caring from a family member which, given the fragmented nature of our society and the breakdown of the cohesive nuclear family, is increasingly rare.

In my personal experience, the average person dies in their 70s of some type of cancer, can get hospice which is paid for by Medicare -- a scenario I would prefer for myself!

Your averages may be all off. More and more people are living into their 90's. And NOT in good health. My mother will be 91 in July - and she's been bouncing around between assisted living where she gets up without assistance and falls - to nursing home rehab - post operatively. She's not the only one in this same boat. Dementia is one of her biggest issues. That and a failing memory.

The "one-on-one family care" you speak of is completely out of the question. It would be 24/7 hands on care that
is not humanly possible. Every living breathing moment next to a complaining 91 year old? The "breakdown of the nuclear family" . Sorry - that's a talking point that needs to be shot down.

I have siblings who watch over her and take care of her needs aside from those addressed by assisted living - and it's incredibly time consuming and very emotionally wearing.

And they all have 40-60 hour work weeks plus their own families to care for.

You're living in a dream world to think that this is easy.

[TFW46]

My mother is 94 and is in perfect physical health. Sadly, her mind left her body many years ago. She's been in several assisted living facilities...one very large, one much smaller -- both with a lot of drawbacks in addition to being very expensive ($5,000-$6,000/month).

Now she's in a house that was bought by a group of nurses and converted to a four-person assisted living facility. These nurses bought several houses and converted all of them to small assisted living facilities for people in various stages of dementia. It's the best arrangement for which we could have hoped, in addition to being very reasonably priced ($2,800/month). I hope that more of these converted houses will be available in the future -- not that they're the answer to all the problems but they do offer a reasonably-priced solution.

[ifa]

This subject is very important and distressing. My mother was diagnosed with mild dementia 4 years ago. Even though the neurologist called it "mild," it was still totally disabling. My mother needs everything done for her, because she cannot remember or plan ahead. I was over 55, working full time, and saving for my own retirement. My mother never had a career and never saved, she does not own a home and does not have money. At that time she was living on SS and SSI, in subsidized housing.

And there were people who thought I should give up my whole life to be her 24/7 caregiver. Even if my mother had a house I could live in and money I could live on, it would still mean giving up the career I have worked so hard for. And I would have to stop saving for retirement. But, since she has no money, I would have had to live on my savings. In the past 4 years my savings increased by about $120k, but if I had been caregiving it would have decreased by that much. And it would still be decreasing, year after year.

I could not see how sacrificing everything I had worked for and everything I care about would be fair or right. I know that a lot of people disagree with me, but I can't see it. I don't have a husband or children to help me if I ever get sick. And I am NOT INTERESTED in being a caregiver.

I know that sounds selfish, and ok fine maybe it is. I think a certain amount of self-caring is healthy.

My mother is in an assisted living home near me, and I visit often and I can see that she is not being abused. She is cared for by professionals who cook, clean, nurse, guard, etc. I would have to learn how to do ALL those things myself!

I have a friend who is doing just that for her mother, who is totally disabled physically but ok mentally. This friend was able to keep her full time job because she has home care aides from Medicaid, and also because the company lets her telecommute 2 days a week. Still, she is beyond exhaustion, hardly gets any sleep, is absolutely miserable. She is socially isolated, and constantly stressed. Her mental and physical health is being destroyed.

And this could go on for many more years, since her mother does not have a serious illness. She is just weak and unable to get out of bed, for whatever reason.

If I were already retired, and if my mother had money, and/or if I had a husband to support me, then I don't know if I would have done something different. But the people who tried so hard to guilt me, when I am over 55 and struggling to survive and save for retirement, since there is no one to take care of me -- well none of them are caregivng their own mothers, so it's real easy for them to talk.

As for the OP, I don't know why she could not have moved near the nursing home so she could visit every day. Being a 24/7 caregiver is solitary confinement. It's worse than prison, because at least in prison they have to give you food and medical care. But caregivers, if their mother has no money, just have to figure out how to survive and hope they don't get sick.

Yes fine in the old days families took care of each other. But now we have jobs, and our relatives live far away. This is not the old days, like it or not.

[blondiel]

Originally Posted by mlb

Your averages may be all off. More and more people are living into their 90's. And NOT in good health. My mother will be 91 in July - and she's been bouncing around between assisted living where she gets up without assistance and falls - to nursing home rehab - post operatively. She's not the only one in this same boat. Dementia is one of her biggest issues. That and a failing memory.

The "one-on-one family care" you speak of is completely out of the question. It would be 24/7 hands on care that
is not humanly possible. Every living breathing moment next to a complaining 91 year old? The "breakdown of the nuclear family" . Sorry - that's a talking point that needs to be shot down.

I have siblings who watch over her and take care of her needs aside from those addressed by assisted living - and it's incredibly time consuming and very emotionally wearing.

And they all have 40-60 hour work weeks plus their own families to care for.

You're living in a dream world to think that this is easy.

Very well stated. I understand. I have been there with my mom. I took care of her in my house for a while and worked 40 plus hours a week. My husband and family helped, but there were just not enough hours in the day to take care of a parent with dementia due to mini strokes. One really has to live with a family member with 24/7 needs to understand. One who hasn't had the experience cannot speak to decisions that have to be made by family members.

I have long term care insurance and I have instructed my son, if I ever need nursing home type care, to use that and my money to provide care for me with the best services that I can afford. I do not want him to put his life on hold to take care of me.

[ifa]

"I do not want him to put his life on hold to take care of me."

If I had any children, I would tell them that. It isn't always just 2 or 3 years, sometimes it can be decades. The caregiver may be alone in the world with little or no help. I think it's fanatical to do this if you are working full time and your disabled parent has no resources for you to live on. Yes you can feel virtuous and people will admire you, but your present and future is literally being thrown away.

[Escort Rider]

Originally Posted by ifa

This subject is very important and distressing. My mother was diagnosed with mild dementia 4 years ago. Even though the neurologist called it "mild," it was still totally disabling. My mother needs everything done for her, because she cannot remember or plan ahead. I was over 55, working full time, and saving for my own retirement. My mother never had a career and never saved, she does not own a home and does not have money. At that time she was living on SS and SSI, in subsidized housing.

And there were people who thought I should give up my whole life to be her 24/7 caregiver. Even if my mother had a house I could live in and money I could live on, it would still mean giving up the career I have worked so hard for. And I would have to stop saving for retirement. But, since she has no money, I would have had to live on my savings. In the past 4 years my savings increased by about $120k, but if I had been caregiving it would have decreased by that much. And it would still be decreasing, year after year.

I could not see how sacrificing everything I had worked for and everything I care about would be fair or right. I know that a lot of people disagree with me, but I can't see it. I don't have a husband or children to help me if I ever get sick. And I am NOT INTERESTED in being a caregiver.

I know that sounds selfish, and ok fine maybe it is. I think a certain amount of self-caring is healthy.

My mother is in an assisted living home near me, and I visit often and I can see that she is not being abused. She is cared for by professionals who cook, clean, nurse, guard, etc. I would have to learn how to do ALL those things myself!

I have a friend who is doing just that for her mother, who is totally disabled physically but ok mentally. This friend was able to keep her full time job because she has home care aides from Medicaid, and also because the company lets her telecommute 2 days a week. Still, she is beyond exhaustion, hardly gets any sleep, is absolutely miserable. She is socially isolated, and constantly stressed. Her mental and physical health is being destroyed.

If I were already retired, and if my mother had money, and/or if I had a husband to support me, then I don't know if I would have done something different. But the people who tried so hard to guilt me, when I am over 55 and struggling to survive and save for retirement, since there is no one to take care of me -- well none of them are caregivng their own mothers, so it's real easy for them to talk.

As for the OP, I don't know why she could not have moved near the nursing home so she could visit every day. Being a 24/7 caregiver is solitary confinement. It's worse than prison, because at least in prison they have to give you food and medical care. But caregivers, if their mother has no money, just have to figure out how to survive and hope they don't get sick.

Yes fine in the old days families took care of each other. But now we have jobs, and our relatives live far away. This is not the old days, like it or not.

You are so right - what a great post. To hell with the people who tried to make you feel guilty. We all have to make our own decisions about these things, and I think you have made an intelligent and realistic case for not choosing martyrdom. The gall of people who would dare suggest that you should become a martyr is inconceivable. Count me among those who do not understand the ones who say they would never let "strangers" care for their mother. Why not? (Notice it's always the mother, rarely the father. Why is that?) Strangers care for our loved ones whenever they have to be hospitalized. They are trained to do so and hence can do a better job of it. What's so different about custodial care for the longer term just because the facility is not called a hospital?

[ifa]

Originally Posted by Escort Rider

You are so right - what a great post. To hell with the people who tried to make you feel guilty. We all have to make our own decisions about these things, and I think you have made an intelligent and realistic case for not choosing martyrdom. The gall of people who would dare suggest that you should become a martyr is inconceivable. Count me among those who do not understand the ones who say they would never let "strangers" care for their mother. Why not? (Notice it's always the mother, rarely the father. Why is that?) Strangers care for our loved ones whenever they have to be hospitalized. They are trained to do so and hence can do a better job of it. What's so different about custodial care for the longer term just because the facility is not called a hospital?

Thank you Escort Rider. I seldom get any validation from anyone on this subject. My martyr friend has learned how to be a nurse and caregiver, and she had no training at all for that. Unlike me, she already was good at cooking and cleaning. I have always been a career woman with minimal domestic skills. But she has learned and done a tremendous amount. She is heroic, you could say. That's what I tell her. I don't tell her she's a crazed fanatical martyr, even though I often think that.

She believes it would be unethical to have her mother taken care of by strangers in a nursing home. She feels her mother would be frightened and unhappy, and that her mother feels safer being cared for personally in her daughter's home. But her mother isn't happy anyway. She has been sick and isolated for many years, when she lived alone, but now she is still somewhat isolated, with only her daughter and the home care aides for company.

My mother is always surrounded by people, except when she is in her private room. She never has to feel alone. Yes of course she loves it when I visit, or those rare occasions when my siblings visit. But she has nice people around her all the time. It isn't wonderful, but no place is wonderful if you have dementia.

And I have to face those disapproving looks and silences. I have ended several friendships because of this. I really can't tolerate it and I do not think I deserve it.

I am not, at all, a cold or unloving person, and I hate being seen that way. But I really have worked very hard and throwing it all away to do something I hate possibly for decades sounded worse than death to me.

But no one tries to make my sister feel guilty, since she is 500 miles away. If I complain that she doesn't help or visit, they say well how can she do anything from that distance? It's like I was assigned the role of martyr, and since I refused it I am irresponsible and unethical.

[TFW46]

I've told both of my adult children that I dont want to be kept alive if my mind goes before my body does (or vice versa). Knowing that neither of them would be able to do anything about it, however, I bought several books on how to take matters into my own hands when necessary. (The best book on that subject, in my opinion, is FINAL EXIT.)

I pray that, if I have to do it myself, some states will have enacted laws legalizing assisted suicide for more than just the terminally-ill by then. I'm a Catholic and I know what the Church teaches about suicide but seeing what my mother has gone through for the past 20+ years (first knowing that she was losing her mind and now having almost no mind at all) makes me realize that God and the Church obviously have different ideas on the consequences of suicide for one's soul.

[TFW46]

ifa, I admire your heroism in posting your feelings. I agree with you totally.