How to frame my proposal to possibly help with grandmother's care to not-quite-dying grandfather and family?

What does Lillian want?

A couple of things:

Why are the sons not thinking about this? What do they think? You may want to talk to them very seriously. They may know things about Lillian that you don't know; things that may end up making your life miserable. Perhaps not; but I'd definitely be talking to them. That is, you and your fiance, as a unit, sitting down and having an indepth discussion.

If John Sr. has money, as it sounds, he can legally "gift" family members yearly. However, he cannot sign over his home to get out of paying for her care.

Also, and this is just my opinion, why do "we" feel as if "we" have to pay our parents (grandparents) back for raising "us"? Having children was their choice in life. They chose to have one to however many children, and at the time, that choice was (probably) NOT made so that they can have care in their last years. All along they way, they have made decisions/choices that put them where they are now. Just my opinion.

Sharon

You right....You don't have a clue. This is a great site to get information from.
You can call several places in your area for assistance with thoughts, ideas, ways to proceed. 'Adult protective Services, Elder Care", there are many ....
God's speed....

I'm sorry to hear of John Sr's health problems he is trying to do what he fels is right in light of the bad news. As for Lilian, nobody but God knows where her mind will be in 2 years. Or how hard it will be on her when John passes. The trauma of lossing him may send her over the edge, if by that time she even understands any of it. Dementia is very hard to deal with for not only the patient but the caregivers as well maybe even more so. The caregivers will remember all the bad things patient does and believe me knowing it's the dementia speaking and acting does nothing for your feelings when the hurt and pain is directed at you, and it will be. I hate to be quite so realistic here but maybe it's what you'll need... direct honesty..... do you want to clean her up after she's pooped all over herself a couple times a day, do you want your furniture to smell like urine because she doesn't know she needs to go pee, how about your favorite little knick knacks being broken because she has a temper tantrum? or her escaping form your home in he middle of night when you are so worn out from all the work and worry of the day you don't hear the door alarms go off. Going to the grocery store and having to check her pockets before getting to the checkout stand because she's put 'something' in them that hasn't been paid for. Probably somthing she'd never have ever wanted or needed before but it would still be shoplifting! Her stripping down to her birthday suite in public, even if it is in your own back yard or front porch. waking up to find her standing over your bed with a knife in her hand. In her right mind she would have never done these things but now to her what was once 'normal' is no more. Trying to talk logically to her when she can no longer understand logic is impossible. Adult Protective Service was a great help to me, he explained to me that after her last 'great escape' in the middle of the night that either I agreed to put her in a nursing home or he would get a Protective Custody Order and do it himself, however in the 3 days it would take him to get the order if she escaped again and got hurt or lost the state COULD file Neglect of the Elderly charges against me, I would go to jail and Mom would still go to the nursing home. He wasn't being an ass about it just telling me I was to exhausted to continue caring for her. She went to the nursing home that day, she hates it but she is safe, well fed, warm and taken care of 24/7. The hallucinations have stopped, nobody is trying to kill her anymore and nobody is killing anybody else anymore, she can't get any 'weapons of defense' there although they have found the plastic knives hidden in her clothing on occassion. And she has attempted on several occassions to break out through the windows. She actually ade it twice before they caught her. So all in all what I'm trying to tell you is no matter how much you love her unless you are wonder woman that doesn't have to sleep for the rest of lillian's life you cannot give her your full attention 24/ 7. And she is not ever going to be cured it will only get worse with time. Visit her as often as you can, take her out on day trips and label everything you take to her in the nursing home, it will be lost and 'misplaced'. As for the guilt you'll feel there's nothing to help with that, just listen to your brain knowing it's best for her and not your heart. John is not telling all of what it's like taking care of her becaue he doesn't want her dignity ruined. But he knows, listen to him, he's doing it out love for all of you. I'm sorry this reply sounds so brutal but it is all true, Mom use to be the sweetest lady in the world now she is just a confused soul that gets mean, very mean, and can even at a mere 5 feet tall and 120 pounds wreak havoc when she gets a UTI or her meds need to be changed once again because the dementia has caught up to meds. It's all trial and error on the meds, some work some don't, some work for a little while then it's back to the start again trying another med. Don't get your hopes up when something starts working good it's only a matter of time that it will not work anymore. Somthing as simple as a cold can set off a whole new phase or stag of this dementia. Dementia is a very harsh crude and nasty illness the worst roller coaster ride in the world.

If grandfatber is looking to impoverish the family resources so the state will take care of grandmother everyone may have a rude awakening. There is a five year "look-back" on gifts that may have to be repaid if she tries to go into a NH on Medicaid. Also, it may be her preference to go into a NH rather than put the burden on family to take care of her. I took out a policy to cover my care for this very reason. I don't want to be a burden on family when I become unable to live on my own. And believe me, it is a burden, no matter how much you love someone, to take over their care in many circumstances.

*throwing disillusion at you*

Obviously you are a very caring person to consider caring for this lady after her husband dies but as I was reading what you wrote I was thinking of you, 3 years from now, on this site tearing your hair out and wondering what the heck you were thinking.

Caregiving always looks good on paper. On paper it's a viable alternative that can serve many purposes. And you're very prudent to begin thinking about the future where she's concerned but I would suggest continuing to discuss placing her in a nursing home when the time comes. You have no idea how bad dementia can get and once her husband dies it's likely to exacerbate the dementia and you'd be dealing with the unknown.

Also, caregiving rips through relationships. Marital, romantic, and familial. It can destroy everything you've built with your fiancée. And don't think for one second that you and your fiancée will be caring for her 50/50. The majority of the burden will be on you.

If, after all of your research and soul searching you decide that you want to care for Lillian, we will be here backing you up. I just hope you think about it long and hard.

18 months ago we considered moving my mother (93 with dementia) into my home. After all, I am retired, i was already caring for her 2-3 days a week in her own home, my husband was willing to help, my 3 young adult sons who are wonderful said they would help, their GFs are CNAs and could help, I had a local aide all lined up ... how much different and harder could it be? Plus, she would be on the main floor with her own bedroom, bathroom, and living room. I must have been delirious with exhaustion.

We did 2, 4-day trial runs and reality hit me silly. The "help" from my husband and sons consisted of talking with my mother while I went to the bathroom or took a shower. Because my mother saw the house and my home and not her's, she was very out of sorts and confused. Because she was already down Dementia Lane, it was useless to explain anything or reason with her. By the 4th day she was miserable, wanted to go home NOW, and I didn't want to go downstairs in the morning and see that puss on her face 1st thing. She was changing her clothes every other time she got up, which was every half hour or so. O.M.G. What was I thinking? And I have infinite patience with her!

After the 2nd time I told my sister NO WAY and we would have to do whatever it takes to let her age in her own home. And that is what we have been doing, facing each challenge together as Mom travels further down Dementia Lane. Believe me, the challenges keep getting more difficult and more often.

I thank God every day that my 2 brothers were dead set against it from day #1 and put up road blocks, going so far as to say outright they wouldn't help me if Mom moved in with me....that I would be on my own with her. Yeah, I was miffed (understatement) but boy oh boy did they do me and my family a favor. and my mother, too. She would not have been happy.

I agree with those saying John Sr. Is trying to tell you all something in his own way. He wouldn't suggest the NH if he didn't think it would be best for her. After all, this is the love of his life. He feels responsible for taking care of her even after his death. My father was like that as well.

Please please please, there are other ways to help Lillian live out her final days safely and with dignity, all of which do no entail her living with you. The black hole of being a caregiver will suck you all in. You will lose your quality of life while feeling responsible for the quantity of hers.

So much information here, thank you all for your answers and perspective! Definitely a lot to think about. Just wanted to say I appreciate it.

About the giving assets away: This will work against getting grandmother immediately on Medicaid and into a nursing home. (Which as the other posters have pointed out is probably the best course of action in this case.) Since John Sr is such a responsible caring person and is doing his best to see that his wife is taken care of, I hope he will be open to the suggestion of seeing an attorney who specializes in elder law, to set up the distribution of assets in a way most advantageous to Grandmother. Giving assets away within five years of needing Medicaid disqualifies Grandmother for a penalty period.

You sound like a loving, caring idealist. And you are smart to realize that if this is to bee considered it should be thrown out there sooner rather than later. For example, the money should be saved so that she can continue to live at home, with hired home care to provide respite for you. BUT ... before you propose anything along these lines, please browse this site and read a book or two or at least some articles on caring for those with dementia. Even reading about it can't prepare you for the reality, but it is a start.

I'm a consultant in decision-making and I will pass on to you a bit of counsel that my clients often find useful: Any time you don't know what to do next, there's an immediate answer about what to do next! It's, GET MORE INFORMATION. You've made a great start by using this site. Getting more information can mean reading books and going online, but that phrase can also encompass collecting other family members' thoughts -- in fact, it would be better said as another phrase, namely BUILD RELATIONSHIPS AROUND THE TOPIC. These next few years are going to be a time in which the family pulls together or the family fails to pull together. Make it your first goal to model pulling together. Don't train your family to a dynamic in which you are out in front all by yourself on this.

This is a noble thought, but my suggestion is to do some research first about where and what kinds of support from other agencies exist in your town. Then have a family meeting that all family members are at, and suggest that it is a discussion/planning meeting for how to help this elderly couple. Start with asking each of them what they see as the problems coming down the pike and what they would like to see happen. As others have said, it will become VERY difficult to care for a person with dementia in your home 24/7, no matter how many people now promise to help. Grandma may prefer being in her own home, and may actually do better there. People have already mentioned the possibility of help from Medicaid and the need to NOT have been giving money away. The rules are very strict. I would also recommend getting family involved with taking this couple to doctor's app'ts and perhaps getting the medical POA so you can be on the discussion end of medical appts, plans etc. down the road. Even a regular POA would be helpful to have ready to go. You don't take away control until it's needed, but with one ill and the other with dementia, they may need help sooner than later with bill paying and financial decisions. You may want to consult with an elder care attorney to walk through all this that may be coming to be decided about, over the next couple years. Paying for some caregivers to come into the home and leave them at home might be a better answer...not 24/7, but enough so that family is not over burdened either. If there is a terminal diagnosis, hospice may be a referral help. And if not being at home must be the choice, perhaps visiting for a couple months at a time, with various family would be a better choice, as it would give all a break. Also, all family members need to clarify what they are capable of in terms of help. You cannot volunteer anyone. Some can, some cannot do physical care regularly....and some simply are unable to deal with it. All can help in ways where they have skills though...IF they are willing.