Hi,
My FIL passed away last 8/14/2021 and he was survived by his wife (my MIL) and his son (my husband) the problem is his wife has been showing signs of dementia for a couple of years, and she has been an utter handful due to COVID. Day centers were closed, placement was out of the question and the stress unfortunately lead to my FIL passing away.
My husband is trying to do everything in his power to do right by his mom, overall I cannot say she is an extremely difficult case per-se. She is just an attention starved person and I am sick of it. We have tried to find her placement, in our state MC is not covered by Medicaid, and due to the fact she requires 1-to-1 care unfortunately she has been kicked out of many SNF, and she is a wandering risk so assisted living is not possible.
Medications appear to have the paradoxical effect on her, or come with other side effects such as delusions, suicidal thoughts, vomiting, lack of eating, lack of sleeping. So her care team has given up on that approach, we even tried geriatric psych and they were unable to find something that would work for her that is relatively safe with minimal side effects. The problem is with attention and social interaction she is perfectly fine, the issue is until we go through all the appeals and hoops to get her the hours she requires my husband is left to flip the bill, which is one thing but he is also forced to give up his time.
We were meant to buy a house and start a family, and all of that went up in smokes because now he has to take care of his mother. She was never a good person prior to being sick, she has always been manipulative and not a team player. Her own family did not even bother to show up for my FIL funereal. I get she is alone, and she is the only blood related family he has left, but I cannot help but feel neglected. I know this is not his fault, but the reality I want his mother to die. Whenever I see her face I only picture choking, poisoning, pushing her down the stairs, watching her drown, in short I want her to suffer.
She has always treated me poorly and acted as if I am not good enough. As my FIL put it she was jealous of me, which I understand is normal. My Father did the same thing with my husband. The difference is my husband is a much kinder, and understanding person that no matter what horrible thing my family did or said about him he just smiled and took it, because he wanted to be with me. Even when I defend him, he always told me do not worry about it, he use to say I will grow on them like moss. I am just not that strong, I hate his mother, I wish she was the one to die and not his father. I hate the amount of suffering her and her family has caused them because they did not properly plan for their future. I hate the fact that I know my behavior causes my husband much stress, and I feel bad because I am trying to protect myself by distancing from the situation because I cannot do it. My MIL very existence causes me to massive anxiety.
I know I am a failure of a wife, but I cannot be by my husband's side during this time, I told him today I am moving out and need space. I am leaving my husband that has been nothing but understanding and supportive though my family's issues. I am not cut out to be a caregiver for someone I hate, or even be in the general area of the process that goes into. Every phone call my husband gets regarding her care my stomach flips and I want to vomit. We are in both couples and individual therapy and it pains me to see my husband sit there and blame himself.
This man legit apologized for showing his emotions and stress around me when dealing with his mother. He apologized for essentially being an advocate for his mother. Here I am putting myself first, while I leave the man I love behind because I am simply not built to care for someone I hate. I do not have the strength to forgive.
I hate this disease and what it does to families, I really am a b*** aren’t I? Such a horrible person.
It seems the husband is this perennial people pleaser who lets both Mom and then his wife run his life. The hospitals and APS keep discharging the mom home against his wishes, but the only time she won't fall apart is when he's there. Then when and if he goes to his own home, it's with a woman who threatened to kill his mom...and it's no big deal?
Tbh if I was in the wife's position I cannot even begin to think how would handle this, what she is feeling is understandable. Sure it may be over the top but given the manipulation present and lack of help from the system cause the mother does not meet the criteria must be draining. The fact they discharged someone back to their home despite a family member saying it is not safe is insane to me. I get it if she meets their criteria for discharge they are free to do so.
The mother needs some help, but it appears the son tried almost everything. Overall this family seems to have many issues and it sucks.
Why are you stuck taking care of her? Shouldn't it be him? He is her son. Why was it up to you?
Is there a way to keep working with a doc to try new or tweak meds to find something that works? There has to be something.
What about the geriatric psych ward? I hear they take the pt in, and tweak meds until they are manageable. I have heard of nice people getting kicked out of nursing homes bc they got their nights/days mixed up, and would go to the nurses station and hang out and bother the nurses. So anyone who is a bother can be removed.
I would have her son consult with her geriatric doctor or get one, and tell him/her that the situation is intolerable. See what they say. I'm sure this isn't the first person who has been a real problem with dementia. They deal with this all the time.
There are ways your husband can deal in the meantime.
You can look up how to deal with a stubborn or difficult person with dementia. Here is one. There are others.
https://betterhealthwhileaging.net/qa-rude-resistant-aging-parent/
I would start with a geriatric doc bc they know about meds. I can't believe they went thru all of them, and that's it.
How is the MIL one one one care? They don't even do that at nursing homes. Can your husband hire someone now to help or get some down time?
I really hope you can both de-pressurize a bit and don't end the relationship. I'm sure your husb is suffering too. You can't change her and the dementia, but you can work on how to react to it. And try (I know it isnt easy). You can always vent on here. Good luck.
Vascular Dementia = "VD"
The other one is MC= memory care and SNF= skilled nursing facility.
this stress, aren’t good. Don’t feed the negatives with such thoughts as it will only damage your soul. Prayers for you and your family to get the help and support you need 🙏
it appears your husband has the means to support you and partially support his Mother.
He can move back home and get an aide or companion for his Mother.
he can visit once a week for Sunday dinner. Why all this drama?
When someone is living alone as his Mother is, but not independent (due to Vas Dem in this case) his phone is probably blowing up with her needs all day long. The needs can grow & take over the caregiver's time/life until they are both living the SAME life - the Mother's.
You are right. He could step back, go for dinner once a week (ie put firm boundaries in place). At present he is trying to help his Mom, help solve the crises (as is a loving thing for a son to do).
It may take him some time to figure out whether this is possible or not.
I will say maybe try to see it from his point of view, the system has not done much to help him, and they are asking him to simply let the worse thing happen and only then will they help out his mom. The system is not easy to deal with during that middle stage of Dementia, and especially during this time Medicaid funded facilities are not the best. The staff will not play nice with a difficult resident she will playing ping pong between hospital to facility. They will not deal with her especially if he is reluctant to sedate her.
Your MIL is younger, and lost her husband not even a year ago. I can understand why he is trying to protect and sustain her quality of life for as long as possible. I am not married so cannot speak from that perspective.
Llamalover47
MIL has Vascular Dementia.
MIL was OK until she was widowed.
Son DOED want to place her into care but she is at that inbetween stage - not obvious for MC, but can't live alone.
"The problem is with attention and social interaction she is perfectly fine".
That makes this a little clearer to me. A parent with dementia & social needs for all day attention. - loses spouse - will seek next closest family member as replacement. In this case the OP's husband. (Not in an inappropriate way - for all day companionship).
Hence my earlier comment about 3 people in this marriage.
The OP has had to exit (temporarily). Makes sense!
I think the ball is in the husband's court now. He must work like crazy to gain that placement for his Mother, hire an Elder Care Coordinator, Social Worker etc but get this done. Asap. Then restore his marriage.
It's a bit nerdy, but some clear goals & a timeline could help here.
Helpless00, what timeframe would be reasonable for you?
One month? Three? Six?
You are at a cross road, it seems, and need to make a decision. His mother's life will be short. Your marriage, hopefully, will last for years.
He needs someone at his side during this difficult time. Your anger is so strong, you may need therapy to overcome it's effects. I guess it boils down to this: which is stronger, your love for him...or your hatred for his mother.
https://www.alzconnected.org/discussion.aspx?g=posts&t=2147559252
https://www.alzconnected.org/discussion.aspx?g=posts&t=2147559376
https://www.alzconnected.org/discussion.aspx?g=posts&t=2147559425
I have not followed much of this thread, but if it is two different people and one persona is trying to keep information away from another is it wise to make the other persona aware of the other thread?
If this is real you might have just just added fuel to the fire.
You do need therapy, as does your husband. The entire situation has become traumatic.
It may take you leaving to get your husband to realize that his choices aren't doing any good even though he comes from a good place. He has to accept that he cannot solve this problem.
And you should accept that you can't reason him out of this.
He makes a bad decision like not allowing the facility to sedate her when she is out of control. He reasons that out of love, there must be "better" way. You reason that his bad decision is made because he is a good person.
It won't do any good to explain to him that he makes decisions that prevent his mother from getting consequences. He will just continue to pursue "goodness" by "protecting" his mother.
And you need to get out of the situation. It's up to you to take care of yourself emotionally. Moving out is the responsible action.
Get out of there.
If you take prayer, I am offering it!
But I think that would make it worse!
bipolar disorders
schizophrenic disorders
epilepsy (yes, seriously, still)
All of these conditions can be effectively managed, so effectively indeed that they are almost unnoticeable; but then things fall apart either every so often or eventually, through stress or crises (e.g. the death of your primary caregiver) or unrelated illness; and a further problem is that some of the medications do the brain no long-term favours either.
If you want to start the conversation afresh, the sentence I'd choose would be something like "is there anything I need to understand about Mother that you have not felt able to tell me about?"
What I am going say here is being said without rancor and with no malice whatsoever towards you.
You should seriously consider getting some psychiatric help for yourself. From what you have said here, you sound like a textbook narcissist. You also admit to fantasizing about your MIL dying a violent death and even wish it on her. That's a serious problem.
You speak about your husband and his mother being "on the spectrum". What's the explanation for your own behavior? What spectrum are you on? You're lamenting about your husband leaving you alone in the apartment that he totally pays for because he's at his mother's place. Maybe you should get a job and help out with expenses and that way your husband may be able to work less and give you more of his time.
Considering that you're at home all day long and not having to care for an elderly person with dementia, you could actually make yourself useful in finding some services and facility options for your MIL. Your husband would probably really appreciate it.
Someone that wishes harm on someone with a brain injury that is studying to be in special education. God have mercy if anyone that talks like this poster gets involved with vulnerable kids or any vulnerable person.
One parent and child on spectrum, now not true, phrased it wrong.
She is moving out because she can't take it, yet husband lives with mom and she lives alone in their home.
Oh, and married 10 years but doesn't know why the family doesn't want her around.
Husband has guardianship but not really only AIP. We ALL know what it takes to get guardianship and obviously this woman would never lose her autonomy based on the stories given here.
This is someone with nothing better to do.
Also it is true that the MMSE is not a great bench mark if the person has limited education they can score lower then they are. Which is why is often not a great bench mark tool for people who are either very well educated or have limited education.
As for the guardianship I am apologize I do not know much about it. All I know this, due to the constant calls to the police made by from her family. A hearing around her capacity was put in place, and he has been dealing with that this entire time. Though to my knowledge you cannot revoke someone’s autonomy unless they are deemed understand to handle their own affairs, and if a doctor is unwilling to make such a call then you are forced down a different route.
Also I do not even know if they have POA, but to my knowledge that also does not go into effect unless it is invoked or written to be active at point of signing. All I know is he has hearings, but has still be able to get his mother home care through medicaid, and take care of her personal affairs. So either he has something that allows him to do so, or she is allowing him to do so, or maybe the hearing is for something else regarding his mother. I can only go based around the information I have available.
Thing is we would need her to lose her autonomy to take proper care of her. As I said I do not know much of details regarding that, all I know is when she was released from the hospital because he refused to pick her up, she was discharged and then soon after brought back to ER due to complaints from the neighbors. Only reason I know about this is because this happened when we were together on a little trip trying to fix our own issues.
This is a lot of process, I am not very knowledgeable in all of this so why not back off. Also it is very least to be with someone and not know why her family does not want her around for the years I have been with him I have only met his extended family once and that was for the wedding. Outside of that it always been just the three of them. Not every family has direct ties.
Truth be told sure if I choose to pay more attention to the situation I would have a better grasp as to what is going on. So what exactly is your problem?
Also idk about you but it is rough being in a home by yourself when you use to share it with someone, then all of sudden they are gone because of someone else. It hurts, how is that so hard to understand? Does everyone have to fit within your perfect little bubble?
But is MIL on the Autism Spectrum??
How many woman over middle age received a correct diagnosis?
The US animal behaviourist Temple Grandin (now aged 70s) was given many 'treatments', locked into psych wards & had multi of dx thrown at her. That she survived that to excel in her field & enlighten others about Autism is remarkable.
Label or not, condition, behaviour or whatever, if the OP don't want MIL in her life, but MIL is a big part of her husband's.. well. I can see the problem.
Must be like 3 people are in this marriage.
As mentioned she is not overly complex to deal with just time consuming.
You also bring up a good point why I think my husband is against just placement anywhere or medication as a first resort. Since he has gone through many issues due to his own issues with ASD. Even in the workplace he still finds himself facing issues, and a desire from health care providers to use medication on him to make him more “functional” though he is probably one of the most put together people I know.
His standard of care goes against what he can realistic provide by himself, but I guess he just does not see it. He wants her to be happy, and probably thinks he can make this work, since that is all he has ever done. Made things work out, he was dealt a shitty hand, but he has made it work for him. He does love to solve problems.
I would leave this mess. Get the legal separation, get out on your own; you are clearly quite brilliant and there are jobs a plenty for you if you are not already working. Tell hubby you have just bowed out of elder care and in fact don't even want to hear the stories. Tell him you will give him at least 6 mo to a year to figure out who it is to be, you or Mom.
What in the WORLD difference will guardianship make for anything????? She is very unlikely to come into any control with that set of papers, and in fact if she has her own lawyer, and she is capable of coming and going as she is, there will BE no guardianship.
The more I hear the more I think you just pulled the MIL from Hades. Not certain you knew that when you married. This seems unlikely to be a sudden occurrance. And your hubby is apparently not forthcoming enough to share the truth with you.
I would leave. That had my vote in the beginning and the more I hear the more I believe there is not another choice. PLEASE don't stay until a poor child is brought into this mess "accidentally".
Married, stayed married, happily. Good solid boundaries set early on & reinforced about how much 'the good son' could do. He KNEW he could not fix or save her.
Sparked off by 'event' ?stroke ?infection, that MIL went way way off the rails. Locked psych wards stuff. Again boundaries put in place, with some give to get through the crises.
Time Limits were added. Just like you said Alva, time limits really helped. 6 weeks it was. I believe emergency guardianship granted but this did not reduce the stress, nor present instant solutions.
That MIL wandered too. She refused AL type places. Eventually, when better stabilised, a home trial was agreed by her care team. She walked at night in front of a train.
They did all they could.
I expect the OP's DH want to feel the same. To know he has done what he could. Then he will be ready to step back? Then the marriage may be resumed?
Of course not all couples would survive a traumatic event such as that. It can split or bring people together.
We live in such enlightened times, hem-hem, that the weight of stigma attached to mental illness and the lengths people will go to to conceal its presence among their family members often get forgotten about. That stigma is however still very much with us, though it's the concealment that does more harm in the long run if you ask me.
In your situation what would be more troubling is that your saintly, understanding and protective husband had not felt able to tell you the truth. Not necessarily because he couldn't trust you with it, mind: there are also lots of unwritten rules and family pacts about not disclosing information to "outsiders" and maybe he was bound by something like that.
But anyway. This is pure speculation, fitting a possible solution (which would explain a lot, all the same) to a puzzle.
What do you think?
The truth is I do not know. After her stroke I did find myself being more understanding, and willing to at the very least play the part and be civil. Just as time went on the time commitment increased, the phone calls regarding her increased, the more frequent visits trying to keep her at peace so to speak.
I found that patience did run out quickly. So I am not 100% if it is the disease or the time that is the factor that I am truly fed up with and is causing the issues. I get I have expressed the dementia aspect in details, while maybe it is not dementia but at the very least she had MCI currently, and given her limited educational baseline the MMSE which is all I have been present for is inappropriate. I do know after her stroke he did have a full cognitive exam and evaluation but being as he is currently in a guardianship hearing I doubt it went well in terms of supporting his claims.
I do agree he is not keeping me in the loop as a means of protecting me, and I have no doubts even if I did not ask he would still do everything to limit my interactions just based off how my mood changes when anything regarding his mother comes into play.
I probably would still feel the same way. I do agree his mother and his family are trying to hide something. They are far too adamant of throwing her in a home. My husband has even offered to take her sister and my mother out for dinner or shopping and the family balks at the mere idea. He tried to setup a zoom event for the holidays being as this was the first one without his father. Offered to buy everyone a tablet, and even show them how to use it. Nothing. Something is off with his family when it comes to this, though granted how they treat him for simply being on the spectrum that much is easy to see they have no regard of mental health concerns.
I do get where you are coming from, and I honestly cannot say for certain how I would react but I do feel it is something far greater then just dementia, and his ideal situation does not exist no matter how hard he tries. Maybe that is what I am really upset over I do not know. He is trying to fix something that cannot be fixed. The system is not perfect, yes it is flawed, and yes you get what you pay for. The harsh reality is even if the top of the line facilities care is limited for people with complex and aggressive behaviors. Even if he capped out his entire salary to send her to the best facility. I do honestly doubt it would not make much of a difference, happiness is a mindset, and what she wants to make her happy is not something he can offer. She wants to be with her family, she wants to speak Spanish and probably reminisce about the memories she still has or whatever. He is killing himself to please someone that cannot be pleased by himself.
Maybe this is less about her and more so about us. I do not know, thanks for the questions though they did get me thinking,
See things like that I am okay with, I was okay with helping with the zoom meeting if they agreed. I can handle hands off things that does not mean direct involvement with her.