Am I wrong in my thinking?
After reading so many comments about the hardship on children who cares for a parent with dementia or Alzheimer's, how do I convince both my children that I'm right in my thinking about putting me in a nursing facility that aides in this awful disease, and leave me alone, don't visit, remember me the way I was, not what this disease does to family. I won't know them anyways! I don't want my kids to go through what my Aunt and Uncle and my Dad went through with my grandmother. I tried to help too, but my part was little compare to theirs. I'm 64 years old, and I pray this disease doesn't happen to me or anything else that may put my children out. I can't convince my children through. I wish they could read some of the caregivers comments. It breaks my heart to read them, as I'm sure those caregivers are hating the way their feeling. (and they shouldn't).
I love my kids, I wanted 5 but God blessed me with 2 awesome kids, whom I adore. I tell my kids to please go by my wishes, and don't worry what other's think or say. I've learned in this life, some people will judge and talk about you no matter what, they have to bring someone down to make them feel good. I have a friend who said to me "I expect my kids to take care of me when I no longer can"! "After everything I've done for them, it's the least they can do"! I told her she needs to do some rethinking...lol
You see, I chose to have kids, to love, nurture, and set them free to a accomplishment all they can! Not to take care of me!!! You see what I'm saying? It was my choice, I didn't have kids so they would have to change my diapers, feed me, wash me! Don't get me wrong, my children are very loving and caring people, and I'm very blessed. I just want them to live and remember me as me. I'm not saying put me in an awful place, (I know my kids wouldn't anyways..lol) But to not get caught up in my care that they lose the joy of living!! That would break my heart. I threaten them that if they don't abide by my wishes, I'll come back and haunt them ....they just laugh and say, sure mom .. They think I'm nuts! Is there something legal I can do? I have my DNR set, my funeral in the process of payments, my life insurance copies to each kid, I just want to be sure this wish of mine is carried out, if it needs to. My children are not on board with my thinking. Thank you
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Ruining your own life to care for another, however, is not a blessing. It's a curse. So maybe there is a sweet spot between "give up your job, friends and family to care for me 24/7" and "drop me off at a facility and forget I'm still alive."
Make plans for your care, tell your children your plans and try not to worry too much about your end of life. You still have plenty of life left to live!
The only part that is incorrect thinking would be for your kids to not visit you.
Could you completely abandon either of YOUR folks in a facility? Probably not.
As for my situation, I actually would rather remember my Mom now (stage 6 Alzheimer's) than her earlier narcissistic years. She tells me she loves me and looks forward to my visits now. That wouldn't of happened before.
I keep drilling into my sig other's mind that he shouldn't be the ATM machine for his grown children. Yes, it is good to help them, but don't spoil them to a point they would be expecting the money. Sig other will need that money for himself later down the road. No way will I be a caregiver, I have past the expiration date of that type of work.
It was in response to his having told many of his friends some of the more extreme dementia related incidents concerning our mother.
Many of these friends, having not yet dealt with their parents declining to the stage that our mother was in - would reply with “before I get that bad I’ll kill myself...”
In telling me about these conversations, my brother would say “They don’t get it. By the time you get that bad - you’re too far gone, to realize you’ve gotten that bad”.
Dementia doesn’t happen overnight. It doesn’t go from 0 to 60 in the blink of an eye. Although, I completely agree that often it does seem that way. And, sure - there are incidents and occasions that do definitely speed the stages along. A fall, going under anesthesia, TIA’s, etc. As well, there aren’t printed schedules or previews telling you just where you’ll be on the declining continuum in X months or years.
Youre still relatively young, kathie333. It could be another 20 years before decisions such as the ones your contemplating come to bear - if at all.
Sooo - am I saying don’t worry it now. “Many a slip between the cup and the lip” as my dad use to say.
No.
What im gonna say is the exact opposite. I’m not answering whether you’re right or wrong to think this way. I’m gonna say what you can DO about it. Cause, frankly - a DNR and a prepaid funeral doesn’t amount to much. IMHO, sorry.
Do you have an Advanced Directive? Take the hard medical choices out of
your children hands and put what you want in writing - legally binding writing. How about a DPOA? Where you can again - make your wishes known - legally. Things like - just how incompetent do you need to be for a representative to make decisions for you. Make someone other than your children your DPOA - if you actually don’t want them involved.
Other things for you to plan now - where are you living - how
long until a move to a retirement community makes sense - one with continuing care? Any plans to give up your car any time soon? How will you get your groceries? How will you get to the doctors?
And - the really big one - do you have the money to live on your own - bringing in paid outside help instead of using your kids? If not - who’s gonna fill out the Medicaid app for you when a nursing home is the next step?
What I’m trying to say is - what’s your plan? What are you actually doing to make sure you have care and that care IS NOT provided by your kids.
Its one thing to “I don’t want to be a burden”. It’s a whole other deal making sure you aren’t. Cause your kids aren’t gonna sit back and do nothing - when there is no other realistic, actual plan in place for your care.
If your kids are blowing you off now when you try to talk about this - I imagine they think it’s premature to discuss AND they just might think it a bid for attention.
So - in the meantime- get going showing your kids you’ve got a plan - a real plan - for your aged care that doesn’t include them as caregivers. But does include them as your loving children- children who visit and nothing more.... if you’re really serious about this.
I just hope I can be as easy going as my Dad was in his 90's, he was a caregiver's dream, but my Mom was h**l on wheels... refused to move to a more elderly friendly living arrangement and refused caregivers. We never know what type of "patient" we will come when illness strikes.
One time while at work I was grumbling about having to drive my folks all over hill and dale. One lady said that I shouldn't be complaining because my folks drove me everywhere when I was a child. She was right BUT my folks weren't 70 when I was a child, BIG difference !!
The simpler, the better.
In the trust, so, written out "legally: I state my desires to NEVER live with any of my kids. We made sure we had money to keep us in our own home or barring that, a good ALF. I also wrote a personal letter to the kids and have spoken to them enough about my wishes to NEVER burden them with my care.
Of course, I will want them and the grands to be as much a part of my life as is possible--but I want to be as independent as possible. Sweet kids--all 5 have said "But mom, you could live with is--it would be FINE"...and they are seeing a relatively "perky" 62 yo who can still jump on the tramp with the kids and take a passel of grandgirls shopping--not an angry, sick, tired old lady that I could likely become.
I have very strong feelings about the independence thing--it has been the driving force behind DH and my choice to save and invest and look to the future.
You CAN have both--care for you that is not the responsibility of your kids--and it sounds like you've set that up.
As you age, you will notice that the kids will treat you differently, but that's OK. Let them fuss you if they WANT TO. Just don't expect it and become one of these narcissistic persons we read so much about.
You could hire a fudiciary that ensures that your wishes are carried out.
I would be careful telling them to just forget you, love doesn't work that way. They would be tormented to know you were all alone, withering away in a facility and they aren't welcome to come see you. My granny had no idea who I was, was none verbal yet, she enjoyed having someone give her love, affection and attention. It wasn't all about her at that stage, it was about my love for her and doing the little bit I could for her.
You could always completely alienate them now, walk away and never look back, if what you said is how you want it. No, you don't want to do that? You are asking essentially the same thing of them.
I would rethink asking children who were raised to be loving, kind and family to go against their hearts, to me that seems as selfish as expecting them to give up their lives for your care.
Just my opinion.
I understand that many people read our advice. I was not saying that every adult child living with a toxic loved one needed to bow down and be subservient to that LO and I never have. If anything, I am one of the first to suggest a facility for the loved one.
In reading your post, though, I get the impression that you are asking your kids to dump you in a facility and forget about you. That may be why they are protesting. And honestly, you aren’t sure dementia will even be a part of your life in the future. My mom is the only family member I can recall who had it. Her mom didn’t and I’m not showing any signs at 65. So don’t “count your chickens”. Don’t make it a topic of constant conversation. Keep up with doctor visits and take any meds prescribed. Eat healthy and keep active.
If at some point you feel the time has come, investigate facilities; Independent Living, Assisted, whatever. Have all your important papers in order. Make sure your children have POA and at least one is a co-signer on your accounts. And remember, you are the Mom. Your word trumps their’s. If you feel you need to, consult an attorney and have them draw up legal papers that say your wish is to live in a facility. I’m certain your children don’t realize what a massive undertaking caregiving is. Even if they read some posts here, they would probably think it would never happen to them. Most do and they’re usually in for a big surprise.
"You are the mom and your word trumps theirs" is why parents think they can hijack their kids lives. It's her life but her word stopped trumping their's when they became adults.
As you are so clear in your thinking and your preferences, you can't do better than put these down into a properly drawn up health care directive, taking detailed advice on how best to do it and whom - seeing as your children's thoughts are so different from your own - you might appoint as your proxy.
Just speaking for myself, I think it is a mistake to try to dictate what other people - grown adults - should do in a hypothetical and very emotional situation. By all means express your preference to be cared for by professionals in a facility, should you need it. But let the children find out for themselves what feels right about how closely involved they want to be.
I understand why you would want to give you kids an out if you're suffering from dementia at some point in the future. And why you are encouraging them to put you in a nursing home when they think it's time if it comes to that. But your kids love you and they will most likely not want to cut all ties with you if you're suffering from dementia and living in a nursing home. Allow them to do what they want to do. You've made your wishes clear but let them decide.
And that haunting threat never works. My mom told me that for years. She's been gone for 7 years now and I have yet to see her since she died.
I too have told my adult daughter that I don't want her being responsible for my care, that a nursing home would be OK if it comes to that. But the thought of never seeing her again breaks my heart. And she wouldn't abandon me if I paid her.
It's true that when elderly parents enter a nursing home the caregiving doesn't end for the adult children. It never truly ends until the elderly parent has died. But I doubt that your kids would just place you in a nursing home and then say, "See ya!"
It's fine to make your wishes known. Put in on paper if you'd like. But let your kids decide for themselves. You can ask them to abandon you but you can't make them actually do it. And if and when the time comes you might change your mind.