This is a pretty personal post, so y’know, feel free to skip it. It isn’t anything to do with gaming but sometimes it just kind of helps me to throw things out into the ether…
I tell ya, I don’t want to get old(er). My mom (82) went to the hospital a week or so before Christmas because her back hurt and she couldn’t move (she had to use Life Alert since she couldn’t get out of bed). Since then she’s been bouncing from hospital to a physical rehab center for the elderly, and back again. Every visit to the hospital (the rehab center had to call 911 Tuesday night become mom couldn’t breathe) reveals a new ailment. Now it’s high potassium levels, to go along with her congestive heart failure, emphysema, pneumonia and of course the back trouble is still lingering.
Before this last trip to the hospital she could walk about 30 feet without having to rest, but needed an oxygen tank (and y’know, that loop thing that you see old people wearing). Now she’s bed-ridden again and needs a full oxygen mask to breath, so she can’t really talk very much.
She keeps on fighting though and her mind has been as sharp as it has ever been, until today. Today she asked my step-sister where the horses were. She was worried about the stables. (My mom is the daughter of a fisherman and she grew up on a family farm. When she was young – remember she was born in the 1920s – everyone still kept horses.) Now it’s hard to say if that was from the many drugs she’s on, or if her mind is finally going.
I mean, it isn’t like we can find a doctor to talk to. Two days she’s been in this new hospital and the doctors all continue to evade my step-sister (who is the only family member still living in the area). The nurses aren’t allowed to tell us anything. Mom might have hours to live and she might have something that they can clear up in a couple of days…we can’t nail down anyone who can answer questions.
In the meanwhile the family is running around in circles trying to find a way to pay for all this care. If she’s going to go home we’ll get a reverse mortgage (she’ll need 24/7 care even at home, at least for a while), if she’s going to wind up in a nursing home then we’ll have to sell the house to pay for it. Mom makes too much money to qualify for Medicaid, but far too little to pay for the care she needs.
Either way, getting the money takes time, and at-home care providers ($250/day) aren’t going to take care of her for free; in fact they require an advance deposit before they even consider it. So do we start rolling on the reverse mortgage, which mom would have to understand and sign (it’s a 96 page form!) and hope she’s going to come home? Will they even approve it without her living at home?
Next week we’re seeing a lawyer to help sort all this out… but damn, the not-knowing just drains you. And wondering if she’s even going to be alive by the time we meet with the lawyer (and next week was the earliest appointment we could get…we made it about a week ago).
And then of course you start feeling guilty because you’re worried about money when your mom is fighting for her life… but without money she won’t get the care she needs, so… it’s a big circle.
But man, nothing prepares you for this stuff. No one teaches you the skills of dealing with the health system, y’know? Much of what we’ve learned has come from word of mouth from other people who’ve gone through this same process, and it’s a process that most often ends with funeral expenses.
It’s like death and dying is a dirty little secret in our society.
Now there’s me, my older brother, my younger step-sister, and then a 2nd remote step-sister who I rarely talk to. NONE of us have kids except the distant step-sister. And I keep thinking “Who is going to be our advocate when we’re getting shunted from hospital to hospital? While we’re all alive, we can take care of each other, but one of us will be the last..”
To quote The Who: I hope I die before I get old.
I wish I had the choice for a peaceful, pain-free death at some time of my choosing, when I can start to see the end and feel like life isn’t really worth the pain any more. I’d estimate that’s at 75 or so, depending on health. I really, really don’t want to be so old I can’t feed myself or move around. Let me die with dignity. Maybe I need to move to Sweden.
But for now, I just wish my poor mom would slip away, or come back to us. Her hovering in this twilight place where she “wakes up” and is in some strange hospital room, over and over… I hate that she has to go through that.
And there’s a point to this post besides me being a whiny bitch again.
PLEASE, if you have a single parent who is elderly, have a talk with them about situations like this. We should have done this; we should have bought the house from my mom and let her live in it for free. That would’ve protected some of her assets. It’s worth talking to a lawyer who specializes in elderly law, too; they can suggest other ways to both protect assets and be prepared for a situation like this. If you don’t handle things the right way, the health care system in the US will just bleed you dry of all your assets then toss you in the cheapest nursing home that is available.
My brother and I talked about taking these steps many times but we were always too squeamish about bringing the topic up with my mother. And now she’s paying the price. Don’t make the same mistake we did. I know this isn’t an issue for many of my readers (most of your parents are probably still quite young) but do keep it in mind when the time comes. Hell, maybe make sure your parents have had these kinds of talks with THEIR parents, if your grandparents are still around.
I watched my mom go through a similar situation two years ago with my grandmother, and it really made my family open up and start talking about these kinds of decisions. We’ve got time (hopefully) before we have to be in this situation with my mother, but although planning may help when the time comes, no amount of planning can really help ease the emotions.
I also wonder what myself and my husband will do when we’re older. We have no plans of having kids, and he jokes about making sure we have enough money to hire a hot live in nurse, but that’s something I suppose we have to start thinking about now so we can have that set aside along with our retirement.
I worry a lot about this stuff too, for my own parents and for myself. People tell me I’m too young to think about this stuff, but I can’t help it. I’ve always been a bit of a worrier, I think way ahead into the future and worry myself sick. It was why I changed career directions a few years back; I was in rehabilitation therapy, and working with complex care patients and in the palliative ward, I just realized I was too emotional and sensitive for the field.
Don’t beat yourself over these “mistakes” you made, it really is hard to talk about that kinda stuff, not easy to think about your loved ones when they’re gone. I think you know you’re doing all you can and it is good you are there to support your mom. I can’t imagine the stress you must be going through, know that I wish you all the best.
@Dickie — Y’know the hot nurse idea might not be so bad, if you could find the right person and if the two of you didn’t need literally 24/7 care. Offer someone free board and some salary in exchange for helping the two of you out.
I was shocked at the $250/day figure for my mom’s potential at-home care until I stopped to think and realized that’s like $10/hour. Now I’m wondering/worrying about what kind of person can live on $10/hour in the Hamptons. And of course the worker isn’t getting all of that..the organization takes a their cut.
@MMOGC — I never worried about anything when I was younger and I’m kind of paying the price now. You shouldn’t worry yourself sick of course, but y’know, you can talk to a financial planner and get yourself a roadmap laid out and then maybe you’ll never have anything to *really* worry about in the future!
LOL I feel like an old man in his rocking chair, waving his cane around and dishing out old-man wisdom to those damned kids on my lawn!! 🙂
Never nice to deal with family that are ill or need medical support. In the UK we have the good old NHS to rely on to give us some support but otherwise we too have care homes that cost the �s.
My dad died back in 1995 and as a family we have always made sure to discuss health(or lack of it) issues with her before the possibility of the worst case scenario happens. But like everyone else, we could do more. Morbid as it seems.
I work in this field. I can tell you my views on death have changed so much in the last 5 years. I realize the importance of having a living will made out. I have explicit directions to not be put on a respirator or feeding tubes if I have a stroke. If I can’t eat, then it’s my time to go..no further interventions.
Some things you may want to consider:
talking to the medical staff about Level of Interventions. All siblings need to be in agreement and get this in place. There are different choices like whether to treat with IV antibiotics or to treat with oral or no treatment but pain medication. It’s a shame when one is not in place and a dying person is then given the full meal deal which can include ICU, cardiac resusitation, feeding tubes etc. If you feel it’s in you mothers best interest to go naturally you really need to communicate this. Insist on palliative intervention or comfort care measures. Essentially making sure the end of life is pain free.
Dr. David Kuhl has written a beautiful book on the subject. “Facing Death, Embracing Life”
http://www.amazon.ca/Facing-Death-Embracing-Life-Understanding/dp/0385660669
The book includes:
� Talking to health care providers about treatment and diagnosis
� Learning the right questions to ask specialists
� Considering home care vs. hospitalization
� Finding sources of financial support
� Offering space and guidance for recording and reflecting on larger, more emotional themes
When looking for residential care if you go that route, look for homes that practice the Eden philosophy. http://www.edenalt.org/ They have a better approach to elder care. Also if you mother was a veteran don’t forget to look to them for help. Our veteran’s homes have much better funding than regular places.
@elleseven — Thank you so much for your comment. I’m going to share it with the rest of the family.
I don’t generally get into what I do on the internet, but i work in the financial business, primarily dealing with people who are 85 or older, and it is heartbreaking how many of them don’t think about what will happen if their in this exact situation.
Everyone should have a will. Everyone should have a durable power of attorney (authorizes someone to make financial decisions for you, even if you’re in a coma). Everyone should have enough money set aside when they retire, not just so they can go on cruises whenever they want, but to pay for all that extra stuff. Nowadays you can get Long term care insurance, though it is probably too late for your mother to buy it, it’s worth looking into for our generation.
The government actually has tax laws in place to encourage savings, but a lot of people just don’t think about how much they’ll need.
*hugs* I hope she’s comfortable soon, in whichever way is best.
You’ve gotten some great advice here. Like Elleseven, I’m in this line of work as well. I’m a geriatric nurse practitioner with my own practice. I provide primary care for residents of assisted living facilities (ALF). So my average age of patient is about 85, all with multiple health problems. You are never too young to start planning for this stuff, for yourself and certainly your loved ones. We all think that we are going to live forever and it won’t happen to us. For us “youngsters”, it’s worth looking into long term care insurance. Assisted livings are great, but can be very, very expensive. The ones I cover range from about $1800 a month to a whopping $5000. Requiring a secure unit for dementia is a definite budget buster.
I know dealing with medical staff while in the hospital can be a huge pain in the ass. Doctors are rarely reliable on what time they will make rounds. And then, sometimes getting them to take a few minutes to actually talk to you is like pulling teeth. I hate hospitals. I’ve been doing this for 14 years now and one of my personal healthcare goals is to never spend the night in the hospital. That should tell you something.
When we get old, our health is such a fine balancing act. It just takes one small thing to start a cascade of events that because of age, we just can’t easily overcome. I have seen patients that I just knew would not make it through make a full recovery though. I hope your mother is able to do so.
PS, acute mental status change like what you expressed, first thing I’d do is check for a urinary tract infection. UTI in the elderly will make them do some whacky, whacky things. I bet I treat a couple of hundred UTIs a year. 🙂
I really wish I’d posted this a few weeks ago. I wanted to once again thank everyone for their excellent advice, in particular those of you with professional experience in these matters. I think I mentioned that we have a first meeting with a lawyer on Wednesday and I’m going in a lot more knowledgeable than I otherwise would have been.
My brother went to see our mom yesterday and he said she really didn’t look good. So we’ll see..
Just a few other things you may want to consider. If she is unable to live at home alone, you may look into assisted living facilities. These do not provide skilled care, but offer medication management, housekeeping, meals, and usually have a licensed nurse at least on call. This does vary from state to state. They can be quite expensive, although there are some options that may fit your budget. There are also residential homes for the aged. These offer places to live but without a nurse on board, although this may vary from state to state as well. I can only quote Tennessee requirements. Here, prior to placement in an ALF, someone from the facility will need to come out and assess her to ensure the appropriateness for placement and level of care required. There are regulations required for ALFs, again varying by state. One requirement here is the ability to escape from the building within 13 minutes, in case of emergency.
If it is felt that she may be a hospice candidate, then residential hospice is awesome. Medicare covers hospice but to qualify, a provider has to feel as if there is roughly 6 months to live. There is no crystal ball of course, and I have a couple of patients that will probably be disenrolled from their hospice programs because they have been on the program for almost a year now. Residential hospice is like a skilled nursing facility but they specialize only in death and dying. The quality of care is usually top notch and the staff is very helpful.
You can get hospice care at home as well, with Medicare covering some of the medications bundled in the hospice program. They will provide nurses, aides for bathing. But that does not solve the problem of the huge cost of needing a sitter with her to see to her safety/needs.
If you do hire a sitter, look into companies that specialize in care for the aged. I can’t stress enough the importance of background checks/references. Unfortunately, ripping off the elderly is a classic scam. Sadly,I would also recommend a safe or having a family member collect valuables and things of sentimental value. Things have a tendency to go missing in some instances.
Sorry to add another long winded comment here. Geriatrics is my professional passion and even in the health care community, resources and knowledge are greatly lacking. Even being in the profession, as I see my parents aging and their health failing, it still feels like such a daunting task. Best of luck to you and your family!
Best wishes. Death is hard for those of us on this side of the veil, losing the person. I’ll try to remember to pray for you guys tonight. I almost lost my brother once due to a car accident and that was rough. The person he was driving with did die. As far as getting old is concerned, my favorite quote is “Getting old ain’t for sissies” and my second favorite “Every part of life is an experience we have to make”.
Maeve – Oh my gosh, please don’t apologize for your comments! They are pure gold.
Tomorrow I’m going down to meet with the rest of the family and a lawyer, so your timing is impeccable. I’ll also see my mom for the first time since Thanksgiving. My brother has been relaying information to me and it will be good to see for myself how she’s doing.
Thallian – I think I’ll put “Getting old ain’t for sissies” on a t-shirt or something. That’s a great quote!
Hey Pete,
Sorry to hear about what your going through. My wife’s grandpa’s health recently went downhill. At first, they put him into a nursing home (which was terrible), then the hospital (where doctors never answered anything), and then finally into an amazing hospice home. Watching the impact on my wife’s family was devastating. Death, it seems, is that thing that no one really talks about but should. Anywho, he ended up dying a natural death (after decisions were made to take out the feeding tube). Keep pushing the doctors for answers. Know that you are not alone in this.