Thats right Ima preachin maybe somewhere I can save just one person from goin through what I am facing here today.
If you are a 24/7 caregiver to your loved one (or your planning on being one) I want you to seriously listen to what I have to say.
This could save you much grief in the long run if you follow this advice.
First off caregiving IS NOT for everyone you must have patience and a strong constitution as well as compassion for all that comes up with this task...and a task it is, dont fool yourself its not easy you MUST learn the fine art of detachment, knowing when to keep the lip zipped learn the fine art of therapeutic lying, and the ability to say no.
Whether your a daughter, son, sister, brother, aunt, uncle, grandchild, husband or wife you must learn that this is no longer the same person that you have loved and admired all your life this is a whole new ballgame, new players yadda yadda get my drift?
Take the time and read about AD, read the postings in these fine halls of education here they are an invaluable tool to help you through the rough times that you ARE gonna come in contact with on a very personal level.
Make sure you have backup plans they dont always work but its a start.
Make sure you plan for nursing homes I have said from the beginning my MIL would never enter a NH as long as I had breath in my body to take care of her...well, things change, your LO's can become a danger to themselves as well as others around them.
You must think outside your comfort zone here. Sometimes things happen beyond our control.
Pinch pennies and get them an insurance plan FROM THE START! I had my MIL on plan F with AARP thank the stars above, it picks up most of what Medicare does not. If there is a problem with funds then get Medi Cal or similar. There is no room for pride in this job unless its pride over what you can do to make it better for your LO!
This is no longer a matter of whos money it is, its a matter of getting our loved ones the best care you can afford and if that means no one is gettin their mitts on an estate then so be it.
I have no tolerance for anyone thinkin they are gonna save a buck on their LO's care by takin on the responsibility themselves for reasons other than "pure ones" If thats the plan, a little heads up.... it ainta gonna work and you might as well give up now.

The money is not yours it is there for the care an welfare of your loved one THAT IS IT remember that.

Now onto the caregivers themselves dont pile up debt, if you can not afford it then you dont need it. Sure there are circumstances where you can not avoid it if its for the care of your LO but be smart about it make sure you can afford it first, try and pinch some more pennies, anything to prevent debt. Remember to ask their PCP if a piece of medical equipment is covered by Medicare first before you go out an purchase...Make friends at a Medical supply house they are a wealth of information for this purpose look in want ads first, there is always someone getting rid of medical equipment and good ole household bleach can clean it up just fine!

This disease can turn on a dime real quick and if you are not working and making a second income within your home you are gonna get into some trouble real quick when the time comes.
I find myself now looking for work after 10 years of being a caregiver in a town that offers not much of anything with only my husband making income in this household....we can get in a world of trouble really fast and theres not anything we can do to stop it.
Sock away some money for expenses and dont touch it so if things do come to a head and you have to put your LO in a home you can survive the first part, get back on your feet and breath a little.
Theres nothing scarier than thinkin you could lose everything...it can cripple you and I admit I had 2 days here carrying on an havin a pity party till I kicked myself and dusted myself off its time to face the music and make a difference....Its time to become a productive member of society again.
I want each an every person to think very carefully about taking on Caregiving of a loved one, if its *in laws* and your afraid of what your spouse may think DONT!
I did at first but give it a minute you get a backbone real quick and learn to say no... you are human and we all have our limits there is NO ROOM for guilt here do not allow someone to guilt you into this job EVER.
If they dont get it make them read this first.
The decision has got to be a pure one with everyone on board and know that extended family while they may say they will help most times do not, expect to do this all on your own BUT dont forget to ASK for help. They are not mind readers here its better to ask and be turned down than to harbor hate for another when all you had to do was ask for help to get them up off their butts an pitch in Remember some people can not handle this job dont get angry at them for this it takes so much patience to do this job.....

Like that sayin goes...
"This is the toughest job you'll ever love"
Remember to be kind to yourself through this dont feel guilty over decisions you have got to make, and you will have to make them, they are no longer large and in charge, you are.

(((Gypsy))) thank you so very much for adding your experience here sweetie I know this is hard on you and Mike is a very lucky man to have such an extraordinary lady like you in his life....I keep rereading this and I am confident that this post (and that of our extended family) is going to help someone out there make a wiser decision when it comes to caring for their LO's...
This is exactly what I wanted to happen...if it prevents one person or a family of well meaning individuals from facing hardships in this caregiving task I know I didnt go through this for nothing.... Changing lives for the better is what its all about

BG I am so sorry that things have changed so drastically for you. You are so right that the CG responsibilities aren't over when a LO is in a facility the responsibilities just change.

quote:

This is hard stuff to talk about and to consider. How many of us have really considered how our lives would be affected if our spouse were to fall ill or die unexpectedly? These are all facts of life and reality is NOT suspended for us!

If you had said this 10 years ago I would have said I don't want to think about it. I had just retired and we were planning another trip north the following summer(we spent that first summer without any big trips-in hindsight I wish we had taken that trip north)and Mike was excited about having carotid surgery as his memory was getting bad and he thought that would be a fix like his quad-bipass had been a few years before. He had the surgery the second week of Sept. stroke in recovery room. Life changed in an instant. I'm afraid I am still mostly keeping my head in the sand. I frightens me when I see him going downhill. I get excited when he has a good day. The Dr. warned me several years ago that he was a "ticking time bomb" that you don't know when it is going to go off. When it does I know that although in a way I have been grieving for almost 10 years I will have a horrible hole. One thing I know is that I will have you guys to help me through it. Gypsy

Thank you MB well said and a little truth about the hunny situation...
THIS IS ONE REASON WHY I bought insurance for MIL... One of many reasons I wanted to ensure she was well taken care of in the event of an emergency such as this OR (no white washin here!)
If my husband died, sorry to say she would have ended up in a NH sooner rather than later due to hardships beyond my control...
Folks this matter is hard to speak about out loud this is why I say you must think outside your comfort zone life changes and theres not a dam thing you can do about that you are not God so you must make plans to ensure the safety of not only your LO but yourselves as well...
Are we repeating ourselves here your asking?
You betcha sweet a$$ we are... WHY because this is no joke most folks dont like talkin death my FIL was like this my MIL is the same way...
Well folks THAT DONT PAY THE DAGGUM BILLS!
Sorry I got a lil carried away there but you get our point

Thanks, BG. In my own situation, my eyes were wide open. I knew the risks I am taking and what will be waiting for me at the end of the line with Mom (get outta those funeral clothes and go get a job!) BUT so many people do not! They don't look down the road and imagine themselves and what will come of them...

Many people are caregiving because of emotional attachments to their loved one, and that is fine and noble, but don't let that attachment make you blind to the needs of your own life when caregiving ends! You have to look down the road as dispassionately, as emotionally detached and as coldly practically as you possibly can! What you are looking at is YOUR life!

It's difficult to see the forest for the trees when embroiled in the details and challenges of caregiving, but you simply MUST take out some time to examine what lies ahead for you and plod toward THAT goal. Without exception, every one of our loved ones are going to die. As BC put it, we ARE in a "dead end job." We MUST force ourselves to consider, think and plan for "the day after" and not just wring our hands and spin our wheels whenever the subject crosses our minds.

This is hard stuff to talk about and to consider. How many of us have really considered how our lives would be affected if our spouse were to fall ill or die unexpectedly? These are all facts of life and reality is NOT suspended for us!

I hope every home caregiver does some thinking about this as a result of your post, BG. GOtta have a plan, folks. If ya wanna get somewhere, ya gotta have a map otherwise you probably will not be able to find your way. Life is the same way: ya gotta have a plan to follow if you wanna get someplace. Good luck to us ALL!!

Thank you BC Im happy if it helps just one person make an informed decision about caregiving to a loved one.
I just can not see blowin sunshine up ones butt this is way too serious a job to do that and its just not me to white wash things either it certainly wont do anyone any good if they are here for answers to this particular issue of taking on the care of another...
I knew going into this it was a temporary job but what mattered most to me was quality of life and a nursing home while they are there to try an accomplish that sometimes its just not possible they dont have the capacity for one on one care and that is a plain fact.
Yes there are NH's out there that are sub standard you'll never hear me sayin any different their in it for the money TRUTH
But there are ones that try an go the extra mile.
Theres only so much they can do with a staff thats less than the amount of patients there.
Thats where we come back into play.
Thats right folks!
Caregiving DOES NOT END once you place them the only difference here is instead of doin the ole 2 step to their bedroom or wherever, you are NOW drivin to do their additional care and to make sure they are safe and well cared for.
If your not then you are doing your LO a great injustice...remember they were there for you to begin with (oh Im sorry was that ole Bunnys guilt trip for the day? YOU GOT THAT RIGHT! )
Ok ok Ill be good but dont think just cause the job at home is done I wont be kickin butt here when someone acts up a bit its not in my nature I calls um likes I sees um
My alter ego here is the voice of much learned experience while I do the occasional hand holding but I do get a lil riled when necessary to keep our family here on the golden path of truth

If you are going to pass the plate, BG, this sermon is worth a big fat donation. All along, your advice has encouraged me with out ever leading me down the prim rose path.

It is the plain truth, not all are cut out for this, and it is an injustice to our LOs and our selves, if we try to force the issue. "Square peg in a round hole". Even the few who seem like naturals, have issues at times and must have help. I always have in mind, "What if this situation changes? (and of course it does change). She could have a stroke and become bedridden, I have racked my brain and there is only so much more that we could do for her in her own home. The CG team are real human beings with real families, real car problems, real health problems, etc. If I had to start over, could I cope?

I really try not to borrow trouble, but this job is in fact a "dead end job". I hate to be so blunt, but it is the plain truth. For me, I think I will probably be trying to retire before it is over, but, "Can I retire tomorrow?" That is a very real question. Dad was phenominal in the way he set up things for them, the way their wills were written, the investments and insurance choices made. Few people are so savvy. I surely am not.