I posted about my situation on Reddit, and got some DM's to seek help from this site.
Long and short of it my MIL is a difficult patient, and her Medcaid PRI does not make it easier to place her via her MLTC, she has been rejected.
We have exhausted all of our options, her issues are triggered based general medications have proven not effective.
She does suffer from some bouts of dementia related psychosis but it triggered based. Her doctors also are against the idea of putting some medications on her file as PRN.
Since I use to be an RN I offered to help with her care which was a horrible mistake. I have told my husband he will need to do the hospital method, but he refuses cause he does not want them to just place her anywhere.
I am at a loss, even her doctors are in favor of not placing her yet. We are well past the ideal I tried to explain we cannot do much we are already I debt paying for care since she does not qualify for much via medicaid yet. Which is another issue.
Yet we all knew she cannot be left alone but safety and supervision is not a covered need, or is wandering prevention.
My husband is getting caught with the ideal, and does not help his mother's medical team are filling his head with all the horror stories regarding nursing homes when it comes to difficult patients..
I use to work on the memory care ward before I got my ED position so I also have horror stories but issue is I am done, and we cannot force placement outside of taking her to the ER and letting them do their thing.
My husband is also not ready to navigate the emotional woes of placement and visiting. He cannot handle her asking to go home, he also dislikes getting phone calls constantly which is most likely what would happen. She is fine with us caring for her, but I am just burnt out and we cannot afford private pay, and medicaid is well medicaid.
I am done, we have a child also.
I wonder if the approach you can take is to ask him if his mother is a good parent. His immediate response will be, "Yes, of course!" Then...
Ask him whether he would expect your children to lose themselves in taking care of either of you when you get old.
Ask him if he would want them to risk bankrupting themselves to take care of you.
Ask him if he would want them to neglect your future grandchildren in favour of taking care of either of you.
Ask him if he would want them to risk their marriage by asking more of their partners in taking care of either of you and risk their partners getting burnout in the process.
Ask him if he thinks that's what his mum really wants for him. Or what she wanted of him 20/30 years ago.
If not, then she's clearly no longer able to think rationally on the subject.
Would he want his children to lose good years of their lives in taking on more caregiving duties than is sustainable because he could no longer think rationally and would only behave appropriately when he got what he wanted?
Finally, ask him how you will both be able to provide for your old age if you spend all your money on his mum.
How will you be able to help your children, if all the money is spent on Grandma?
You need to be present with the doctors next time and find out what they actually say, not your husband's interpretation of it. And you need to point out that you cannot keep up this level of care. You are burnt out and you are not rich.
You need to step back and be firm with your husband. Either that, or your relationship could be ruined.
You can do this!
Take all of her financial information to an Elder Lawyer and ask for assistance applying for Medicaid. They will tell you exactly what to do and how to do it. Things may need to be sold, money placed in a trust for her care, etc... Find a memory care facility close to your home, so your husband can visit her as often as he likes.
If you continue to bear a large part of the hands on propping up he will never see or realize how much she requires to be safe and cared for.
Tough situation for everyone involved. Best of luck finding a way forward.
Caregiving is one of the hardest things anyone can do. Promises can be made to avoid nursing homes but circumstances change to where they can’t be honored. Start creating a life for ourself—new job, vacation, whatever. You’ll restore your brain and mental health, but of course caregiving will still be in the your in mind, but not front and center. Your husband will figure out what you go through. Boundaries!!
I read this several times over & it is so clear when put this way.
The drugs you are pushing on her may actually be what is causing a lot of the problems.
Please look into additional home-care for her before going to such extremes to dump her somewhere. Listen to your husband as well, do not be so cruel!
Her mother decided not to accept food anymore. Her doctor checked on her.
After days had passed she asked her daughter “I’m I dead yet”?
Her mother was determined to shut herself down. She was successful.
You cannot fix this problem. Have you tried contacting the Alzheimers Association? They have a lot of free information and they have a 24 hour hotline to call with questions. Have you spoken to APS? I found them to be pretty unhelpful (in upstate NY) but different states have different agencies and levels of help.
I agree with everyone here, I would not take her into your home. Especially if you have children. That's a lot of stress.
You can't help anyone else out when you are overwhelmed. I had to let the hospital place my dad because my Mom (who has dementia) refused to enter a senior community and they lived alone. She was wandering, the neighbors were complaining, she was falling, she could have gotten lost in the winter outside. I would try to talk with APS and her doctors to get your DH to understand it is not just about what your MIL wants. It really comes down to "is she safe".
Keep asking questions. This is a great website. People care. If you have money, hire an elder attorney. If not utilize Alzheimers Assoc. or AFA. Use Adult Protective Services (APS), use her doctors. You need to get your husband to understand, it is hard and it will get harder if you do not get help. Outside caregivers? Is that an option?
Please give us an update. Sending good wishes your way.
This too shall pass......sometimes it just takes a lot of effort.
....and go to couple's counselling. Find a caregiver for you MIL while you go to counselling, not a neighbor, not a church friend, a paid caregiver. My reasoning is: 1) start the transition to paid caregiving 2) find out the ins and outs of paid caregiving.
When my Mom was doing at-home care with dementia, she was quite difficult for most care givers. However, the ones that tolerated and anticipated her antics the best, were the nurses who worked in the dementia portion of the hospital. I asked them how they could do that job, day in and day out. They all universally said 1) it is only for 8 hours a day, and then they are away from it 2) there were many people to share the load, therefore, the burden to give care was not entirely on them 3) they get paid for it and know they can walk away if it affects their health.
As you are finding, caregiving for a relative in your house or even their house is not similar to being a caregiver or nurse at a MC unit. You DO NOT have a variety of trained professionals to help you and there is no begin and end. Walking away is difficult due to the emotional ties.
So start with the first: 1) draw up a contract as to what you are willing to do and what you are not, taking into account that you DO have a child to also care for. 2) Hire in-home help 3) seek couple's counselling or personal counselling.
Also, as a word of caution, do not let your experience on the dementia ward affect your tolerance and expectations and future care of your MIL. I suspect you have your hands full with caring for your child, and your MIL is just adding to an already full cup.
Try to make a fruit smoothie from the sour fruits that life is handing you.
I talked myself blue in the face trying to get my DH to see how bad his mom's QOL was and how she would probably flourish in a group setting. He never believed me and it became a real issue between us. He thought I was cruel and heartless. I thought he and his sibs were trying to support an un-supportable situation.
Finally, OB crashed, hard, and said he would no longer be hands on with MIL. From there it was only 2 weeks and she was moved to an ALF.
And she's FINE.
DH said the other night that they should have done this 5 years ago. I said "So, maybe I was right?" VERY begrudgingly, he said "Yeah, kind of, I guess."
Bottom line, she's safer and better cared for and hopefully she will not be awful about her new living arrangements.
And yes, my DH is going through some horrible guilt pains. when the guilt should be that he neglected ME through all of this and our marriage has suffered some real blows.
You need to STOP ENABLING! Step back and let your husband do all that you do and see what comes from it. If you have to tell him you are sick and need to go lie down do it everytime they need you.
When he was in his own apartment we had ring cameras in two rooms there to watch him. They can be talked to over the camera. When he ended up in a nursing home he fell outside laid on the ground for 30 minutes until someone found him. If he didn't fall he would be still in his apartment.
As for Medicaid start the paperwork NOW. I don't know where you are but I did the medicaid paperwork for my BIL had to spend down his finances to get him into the nursing home. He has what Medicaid allows to have in his account.
And as far as them being there if you do an ER drop they will get her into a place. They will probably put her on meds that work. My BIL is on meds that calm him down. The doctor associated with the nursing home put him on them.
Prayers that you take care of yourself because if you don't where will your husband be and you.
1) What’s with this ‘medical team’? How many, what qualifications, and what practical experience? You are blaming a lot of this on what the ‘medical team’ is telling DH. Hire a new doctor! Object strongly to their faces about their lack of reality! Blow up in their faces! Tell them to keep their mouths shut unless they are willing to come and provide a week’s REAL help. You don’t have to be their victim, forget about ‘politeness’. Call in APS and get a second opinion from them – after making it clear that you are at breaking point.
2) “I know if I divorce him that will break him”. M’s behavior will break him, ignoring these unrealistic medicos is unacceptable, going along these lines will ruin you both financially …. The poor bloke is in for a hard time, whatever choices he makes, isn’t he? Time for you to make sensible decisions? Or does “I love and care for him too much to let him go down this path alone” mean that you are determined to share the hard time?
3) MIL “does not want to be a burden but would not want to go into a nursing home. She would rather die before that”. Funny thing is that they usually have the means to die, but they actually choose NOT. It’s all just words to put on pressure and guilt.
4) The current situation is only working because of your support, as well as DH’s care work. DH “does not feel someone should have to be put in danger to get help”. In fact someone may need to ‘in danger’ before they accept help. They are responsible for the dangers, which come from their own needs and mindset, not from artificial dangers ‘put’ there by you. Being stubborn gives them their ‘best option’. You can withdraw your help. This will make DH change what he does to support MIL, and when he changes MIL may find that it is no longer her best option.
5) You don’t want to divorce, but there are other ways to tip the balance on what’s happening. Take a holiday, go away for a month, visit the old home, find an ‘oldies’ tour to visit somewhere you have always wanted to see. You are ALLOWED to do this. You don’t need permission from MIL or from DH. It’s called living your own life. Then you can find out how things change, without any irreversible marriage problems. If you think it’s too expensive, just trust me – divorce is a lot more expensive!
You have options that you can take yourself. Don’t think that you are stuck, with no options. It’s not true – any more than the argument that these care arrangements can’t change.
Yours, Margaret
The LO had long lost sight of the big picture. Went about their day & concluded they lived alone therefore were independant.
#1 Untruth : Independant.
The Social Worker re-phrased this as "Living alone, DEPENDANTLY".
I sought much advice.
I was told to have HONEST discusions to what I could/would do going forward.
To STEP BACK..
To expect PUSH BACK.
To HOLD my position firm.
To follow up my WORDS of NO with ACTIONS.
The best way was to BE BUSY.
A good sensible Councillor/Coach advised people in this position to get a job. A part-time.job, a volunteer job at their children's school, start a study course, anything. Just no longer be available. Quit.
I had to. I had to actually quit & leave it all on others for them to SEE the FULL level of dependance.
HelpNeeded, I think you may need to consider this too.
Be honest & clear. Tell your DH:
I will not continue to prop this up.
I am starting a new job/study/something & will no longer be available.
If your Husband talks of reducing his paid work hours or funding aides to replace you he will need marriage councelling. To see how his actions will financially DAMAGE his own family unit.
I DO very much understand not wanting to leave MIL unsupervised & in an unsafe way. (No-one would suggest leaving her to burn the home down or fall & suffer a head wound). So he needs to ADD what safety measures he can; eg
Falls alarm
Easy heat meals (no cooking)
Food & medicones delivered.
Regular aid visits (MIL pays).
Could MIL be OK with that?
If not, he needs to get a NEW plan.
Withdrawing your assistance will force him to hurry up with that new plan.
Tough love.
My mother has said you can shoot me first if you are going to put me in a nursing home. Or you can push me off a bridge. At the same time she says she doesn't want to be a burden. What a stinking heap of emotional blackmail! I've heard so many people here say their LO's said the same.
What are we supposed to do with this? It's a lose/ lose. We have no choice but to be the "bad guy" and be the person who places our LO. And then suffer their sense of betrayal and wrath for the rest of their lives...After we have given so much time, energy, emotional and mental anguish, and money to do everything we could for them. I'm getting so very angry about this, both for myself and for everyone else who posts the same on here.
That is not dangerous slope to go down though that can easily be abused by many and I understand why it is not possible.
I do not think it is emotional black mail just someone being honest how they feel.
I will be so honest as to say with the mental issues and medications there is no ideal in even the most wonderful memory care with all the financial assets in the world, and it is memory care she needs or a nursing home and medication, as she cannot be cared for easily and as you have seen as regards Medicaid, EVERY PLACE out there cherry picks patients.
You MIL has needs that you cannot fulfill and needs that no one ELSE wants to fulfill. Period. End of sentence. And the facts.
It doesn't get worse than this, and from my own view over time, you pegged it exactly. I am also a retired RN. I think we both know that the "hospital method" as you call it, and what we here admit is the ER DUMP is the only way. And no, the placement won't be pretty and may not even be in your area.
It is time for an honest sit down with hubby. It is time that the marital disagreement is addressed. This is his Mom. I understand that. Now I need you to tell me that he is on board with at LEAST 50% of the care of her and of the rest of the household. If you can tell me that, I won't be as tough on him as I would like to.
The truth is that I would be telling any husband of mine that I understand I stepped into this myself, and that it was likely the biggest mistake I ever made, that I should have known better as an RN. But that I cannot go on either mentally or physically, and that it is literally destroying me. I am going to admit right off that MIL is a placement problem. And that of course doctors don't want her placed as it is basically losing a patient who will likely have to be in and out of neuro-psyc rehabs for medication titration for the rest of her life, and who will likely be over medicated to non responsiveness of undermedicated so that she is shown the exit of any facility out there. I would tell that husband that in the most ideal of circumstances (say she has lots of money) her mental situation is going to make placement almost impossible.
AFTER I said ALL OF THAT I would say that I know this is painful, that not everything can be fixed, that we didn't create her circumstance and cannot fix it, but that I personally can no longer endure it.
I would tell husband he has a few days to think on this but that it has come down to you or her. That if she stays you will have to leave. You will see an attorney for legal separation and try to find a nearby small efficiency room or apartment, that you will attempt to help with some things such as shopping and etc., that you love him, but that you cannot go on.
I don't see another way.
I know you don't either and that's why you are here.
Know that you are not alone.
I am so dreadfully sorry. I just finished a memoir by a daughter whose mother, even IN CARE lived way way too long. Called Requiem for my Mother her own very talented musician mother was reduced to being someone her family longed to see go to her peace. This is what so many of us are reduced to. People praying that our elders can pass.
It is nice to be around people that do get it. I do feel for him and I have tried to tell him many times that this diease has no real good options just a bunch of crap ones.
I feel for him, and my MIL. I wish I could take away her pain and suffering. Sadly that is not option.
I will speak to an attorney to see what my options are.
Edit: While he cannot always do 50% given work he does do all he can when it comes to both our child and his mother. Would say it is more 60:40.
I was able to stop working when our kid was born due to some smart / lucky investments and his income.
I will be looking to get back to work going forward though.
You tell him plainly that either she goes into a "home" or he can find a new one because you'll take the current one in the divorce settlement. Talk to a divorce lawyer for a free consultation just for information.
You can do an 'ER Dump' and ask for the Social Admit at the hospital without him. You are forced to take care of her and it is your right to refuse to. When she's in the ER, explain to the social worker you speak to what your situation is at home with your husband too. They'll help you.
Now as for your husband. He can't "handle" her asking to go home?
Sister, please. Did you marry a grown man, or a first-grader? He doesn't "like" getting constant phone calls? Well I've got news for him. NO ONE likes getting constant phone calls from care facility employees or the perpetually complaining, miserable, guilt-tripping elder who had to placed in a care facility.
Does he know that there's wonderful inventions for phones these days called Caller ID and voicemail? He doesn't have to take every call or any for that matter. He can listen to whatever voicemails he wants and delete the rest.
Nursing homes and memory care facilities aren't always great places and Medicaid ones never are. It is what it is though. You did your best to be her caregiver. Now you can't do it anymore and that's okay. Other arrangements have to be made. Both of you can still help with her care if she is placed. Private help can go to the facility a few hours a week. There are volunteer groups who do this for free for elders in care facilities. There are options and none of the options involve you paying for her care.
Separate your income and finances from his and do not pay one cent out of your money for her care.
You and the child come before his mother. This is what he chose when he married and started a family with you. Remind him of this.
Good luck to you. I hope it all works out.
And FYI, my mother went from private pay to Medicaid in the best nursing home in her city, receiving the same competent, kind care throughout, in the same bed, same room, same caregivers. No one outside the business director knew or cared how she was paying. The only way to become Medicaid qualified is to spend mom’s money, spending yours will never help toward that
A lot of good places will accept Medicaid after a person has cash-paid for a certain amount of time.