My husband or my child?

I have never been in your situation but I do want to wish you well.

Perhaps others on the forum have had similar experiences and can help.

I certainly hear your pain and understand that you have a lot on your plate and important decisions to make.

I hope that you will find viable situations as you travel along this difficult journey.

Oh Marcy--

I had never HEARD of CADASIL before and after reading about it---my heart aches for you!

For what you have been through and for the knowledge of what is to come.

For WIW, MY choice would be my child, over my DH, no matter what. Esp when your son is still relatively young and needing you more than he thinks he does. He's had a 'different' upbringing due to his dad's condition---and I personally think he is owed some 'normalcy'.

Are you placing your DH in some kind of care facility? Or saying that it isn't possible?

You have no reason to feel guilt. It's a 'Sophie's Choice' situation, truly, but you are right, I think, to choose your son.

I hope you come back and lean on us for support--the little I read about this disease was just heart wrenching.

I’m sorry you’re in such circumstances, just heartbreaking. I can’t say I have experience like yours, but please don’t think you’re choosing your husband or your son. Just the opposite, you’re picking both. Your husband has care needs beyond what you can safely provide, having him move to a place where he can receive the care he needs is a kindness to him. You’re choosing to act for his best interests. And your son needs a safe place to fall. That’s what my husband and I call the young adult children’s need for a place to come back to, that’s safe and accepting. You’re choosing to look after his needs. Please be encouraged that you’re choosing both, something a good wife and mom would do. Your care for your husband won’t end when he enters memory care, you’ll be his advocate there. You’re doing a good thing for all, protecting your own health is also vital. I wish you peace in this transition

You don't need to sell your home. Medicaid allows assets to be split. You could place DH in a LTC facility, spend down his share of the assets, then apply for Medicaid with you being the Community spouse. You will be able to stay in the house and have a car. You will be given enough to live on from his SS.

If you sell the home, it needs to be at Market Value if Medicaid is in DHs future. Most states the look back is 5 years. And if you sell, I would think 50% of the proceeds would be considered yours with the other half going towards his care. You need to talk to a caseworker at Medicaid to see what options u have. If it gets too confusing then consult with a lawyer well versed in Medicaid.

If your DH becomes violent, then call the police. He may be taken to a Psychic facility for monitoring. If this happens, tell them you are now afraid for your safety and he cannot come back to your home. If he lands in a hospital and/or rehab. Have him evaluated for 24/7 care. If found he needs it, tell the SW that you cannot care for him at home, have him placed in LTC and start the Medicaid application.

This is not the man you married. From what you describe he needs more care than you can give him. Seems to me he needs serious medications. You don't have to do this. At this point, yes your children and you are more important.

I guess because we are aging (72 & 74) we have talked recently about primarily me caring for my DH then he for me. He has always felt he will go before me and has made sure there is money there for me. My DH has been extremely hard of hearing since the age of 3 or 4. Of course, as he has aged, he is almost deaf. The deaf are more likely to suffer from a Dementia. My DH is 10 in taller than me and weighs about 215 lbs. I am 5' tall. Like most people, he doesn't like Hospitals (childhood trama) and he definitely doesn't want to live in a LTC facility. I told him I would care for him as long as I can but I cannot promise that I will not need to place him somewhere someday. I pray it never comes to that. But we never know what life will bring.

I think you are right in placing your son first. Get Medicaid and place your husband.

If he is a child at 20 coming home will not make him less so, but will rather retard his growing up. If he can't live with Dad then he can't and that's understandable, but to give up the husband, when you would not have ordinarily done so, with a son who may decide he is "out of there" in a year? I don't see it. I am familiar with CADASIL. I am so sorry. It is dreadful to deal with.
You haven't shunned your son. He can either grow up (which is what your 20s are for, or come home despite Dad. It is up to him. You are choosing the husband who you vowed to choose at the get go.
This isn't a fix-it situation. Everyone can't be 100% happy and you aren't responsible to make it so for them.
I am sorry and wish you the best.

I hesitated to raise this issue, but I sense that you're attempting to evaluate all issues.    My concern is that if either of your sons does contract the disease, their memories of how their father spent the last years of his life may affect their own decisions and hope for their futures.

JMO but I don’t think letting a child come home to live retards their growth. Both of my sons moved out and came back home. They are both responsible adults. One is now married and a father. He saved all of his money living at home and he and his wife had the funds to buy a nice house. My sons will always be my sons. I know that my husband would never want his sons to come home and be uncomfortable with his ill health.

Marcy,
I don't know you, and this may sound harsh.
But choosing between your son and your husband is not an issue here.

You may be stuck in "All or nothing" thinking.
Or another cognitive error: Catastrophizing, over-thinking, or just panic.

You wait, you will find a much easier answer to all your important concerns soon. Just keep talking it out here, others can help you refocus on some viable solutions.

I think your husband has reached a point where placement is required. Period. Regardless of your son and his needs, your needs must prevail. You say your husband is "disoriented & deconstructing, defiant, anxious and has logorrhea (never stops talking & is demanding of attention); he never sleeps & won't let us sleep, knocking on our doors all night. This abyss of dysfunction is shortening my life, I'm sure. And it's cumulative from decades of having to move state to state every few years due to my husband's job losses, and his bullying behavior, both probably due to the disease." These statements ALONE demand that he be placed, otherwise, your life will be further ruined and that is not acceptable. You've done everything in your power to care for this man to the best of your ability, and you can no longer do so. You are only human and have reached your limit. There is no crime or shame in such a thing. This disease prevails now. If your husband had a physical disease, you'd get him to the hospital immediately. He has a mental disease so you question whether he should be placed, and feel guilty? That's where your error in thinking is present!

Once DH is placed, then you make decisions about your son as you wish. You're not 'choosing' your son over your husband. You are making the only decision you can possibly make here, for everyone's benefit, and that is placing your husband. From there, all other choices and decisions can be made.

It is never a mistake to allow a child to move back home for a while. My own son was about 21 and going through a bad period of life when he asked if he could move back in with me for a while. Of course I said yes! How on earth would allowing him to move back in with me for 9 months 'retard his growing up'? In fact, what it did was it allowed him TO grow up by giving him a chance to pay off credit card debts he'd accumulated, unwisely, and stop drinking to excess, and to clear his head. A parent's door should always be open to her children. My daughter moved back in as well when she was about 20, for about 18 months while she went back to college to pursue a different degree. She's now a successful RN and her life is grand. Moving back in with mom and step dad surely didn't 'retard her growing up' at ALL!

Wishing you the best of luck with all you have on your plate right now. Please don't add guilt to the already heavy load you're juggling.

Your marriage vows said, "In sickness and in health." Your job is to care for your husband, and placing him where he'll be safe and properly cared for IS honoring those vows. You are absolutely not abandoning him -- you are doing the right thing by placing him.

Your boy needs you. Let him come home.

Did I read right that your younger son wants to come for *summer break*? (Not like 6 or 12 months or more?)

Agree with SendHelp - doesn't have to be all or nothing thinking.

Can you look into short term respite care instead? Try all your local NHs. Try for 4 weeks.

You will get a break (I'm sure you need one). Son can stay in a more harmonious home, even if for a shorter visit than he planned. Your DH will have the experience of being cared for by others. (This may seem like a bad deal for him but he will need other non-you care at some stage I am guessing? Plus: who would care for DH if you were ill or injured? Having a respite backup is quite prudent.)

So it would be a compromise for all 3 of you. Anyway, that's my suggestion.

Marcy, when were you and your husband told of this diagnosis? And what have you discussed about it with the boys?

CADASIL was new to me, too - I don't know where we'd all be without Wikipedia! - and it even sounds as if it's comparatively new in the world of neurology, as a distinct syndrome at least.

One rule I would stick to is not to try to understand others' points of view from second-hand reports. For example: thank your son for telling you what his younger brother said to him, then call your youngest son and encourage him to tell you what he's feeling. For this to work, he will have to understand first that - in the classic phrase - "it is okay not to be okay." It is okay for him not to be able to tolerate his father's disease when what he needs is to rest and unwind and prepare for next year.

But never mind that for the time being - communication is a big subject and you will develop your own ways as you go along. Meanwhile the here and now: what are your next steps?

My 1st thought was that you don't need to choose between your husband and son, you need to choose YOU.  Think about the toll caring for your husband is taking on your own health.  Speak with an Elder Law Attorney and find out what your options are for getting care for your husband.  Having him at home is killing you.  Enlist the help of your sons so they know how the system works and where to get help if they need it in the future.  Do what you can to allow younger son a safe place for the summer.  We just sat down with our 28 yo nephew who is going through a breakup and needs a place to stay to get back on his feet financially.  His mother has mental issues and he does not want to return there after finally breaking free. We discussed a plan for his future and a minimal rent payment. His plan will be to be out by fall.

Guilt should only be taken on when someone does something wrong. Making a decision to move your husband to a safe place where he would be properly cared for is not doing something wrong.

I can only imagine, having grown up with this man and his "quirks" has done some emotional damage to you and your sons. It is a good thing that your son wishes to come home for the summer to be with you, but his reservations are valid.

As others have said, getting your husband the care he needs, should it require a facility, should NOT overburden you. There are protections in the Medicaid system that allow for splitting "liquid" assets and preserving the home for the "community" spouse, aka you. You would be wise to consult with an EC atty to make sure you are protected and then see if he might qualify for Medicaid. Any assets split between you (it isn't always a 50-50 split, they have formulas for ensuring YOUR income and assets are sufficient to preserve your lifestyle) would be used for his care initially. After those assets are used, Medicaid would take over - it is income based and varies by state, so you really need to speak with an EC atty to know where you stand.

Since summer is so close at hand, are there any options that might allow your son to return home, without having to deal with his dad? If your husband needs care, perhaps you could hire someone to care for him and find a summer rental for you and your son. If not, is it possible to at least find a place nearby for your son to stay over the summer, so he isn't exposed to your husband, but you can do things together while he is here?

Are there no medications that might address some of his symptoms? While there isn't a cure, toning down some of his behavioral issues could be helpful. In the end, you will most likely have to find a place for him, for your safety and his. It is important to consult with an EC atty, to get everything in place now while you can. If you don't have POAs, wills, etc set up, these need to be done asap, if your husband is still considered competent (The atty can talk with him privately, to determine if he feels competence is ok - my mother was in the early stages of dementia, and we needed to address some issues. We had POAs and will done previously, but needed to protect her assets from herself or unscrupulous people. He chatted with and queried mom apart from us and determined she could still make the decisions needed.) Many EC attys offer a limited free first consult, so have your questions and concerns, plus information about assets and income ready before you meet to get the most from your free time. Take notes to compare with others. Try several before you decide on one. The atty can also give recommendations about how to approach placement and assets, as well as Medicaid (from doing lookups to try to answer other questions, I have noted there are differences in income limits for "traditional" Medicaid, aka insurance, and LTC Medicaid (it is higher for the LTC.) Your best bet is seeing an EC atty.

As for your sons and their futures, would they object to being tested for the gene? Some people just don't want to know. It appears that they can have it, but that doesn't mean they will be impacted. Knowing more about it and how to lead a healthier lifestyle can help minimize the onset or impact. Keeping BP in check, not smoking, etc. If they were to develop symptoms, you'd all be aware and know how to "deal" with it, plus advances in medicine might have some kind of treatment in the future. None of us know what our futures hold, so we can't live in fear of what may be. Knowing there is potential for something like this might help them make better choices now, and focus on living the best they can.

Hoping you can at least find some respite for him, and allow you a break and allow your son to come home without concerns.

My heart goes out to you. I think you have made the right choice in a situation that is so hard. You can do more for your sons than you can for your husband just now. It sounds like a terrible disease. What you and your sons need to focus on is making the most of your time together. Make some happy memories whilst you can and think as positively as you are able: they also have a 50% chance of NOT developing the illness.
Good luck xx

I assume when you got married you promised to be there in sickness and in health for richer or poor. And I assume you took those vows very seriously. Your son is am adults at 20 if he can't live in the same house as hís dad then he can get his own place, get job so he is only there part-time. Even in uncivilized and in civilized countries the younger take care of the elderly. It seems to me that you could use some help you can hire a home are for Anywhere from a few hours a day or a couple times a week. While they take care of your husband you go and do things you enjoy. Go to lunch with girlfriend's maybe go shopping, a movie, beauty shop, walk, excerice. You are correct when you say it has probably taken 10 years off your life and it will take more of a toll if you do not get some respect care.i would tell your son he needs to get s job do he isn't home wr/7 . Or hire someone for a week and you And he can go on vacation. Hangs of scenery will do you a whole barrel full of energy, happiness.

I think you have made the right decision.  Your husband needs care and allowing him to torment your family and not get the care he needs is not good for anyone.  I disagree with those that throw your wedding vows in your face.  There is no reward for being a martyr  and allowing him to torment you and your children...it is ridiculous for someone to try and guilt you over that.  No where in those vows does it say you can't get your spouse medical/mental help and support if there are others who are better trained to deal with this sort of thing.  If you are not healthy mentally and physically, you won't be able to help your husband or children. 

If there is a genetic test for CADASIL that your kids can get, they might want to know if they have it.  If they test negative it would alleviate any angst and if they test positive, they can plan accordingly and make there wishes known now of how they want to handle it.  After watching their father, I am sure they have opinions on the matter.  Just a suggestion.

First of all, this is my personal opinion. Your son can come back home anytime he wants. He could also help you with his dad. He sounds very immature to try to make you choose. If you give up your home to be with him when he decides he doesn’t want you there you are “ sorry out of luck “. I’m like you I will choose my kids over any man.
I have a son living with me. He was here before my second husband. My second husband has frontal lobe dementia. He’s getting worse. He wants to sleep all the time. His family has a lot of advice but they are no help. My son will watch him since my husband no longer wants to do anything. But my son says mom I’m not changing him that’s not my dad.
what I’m saying is your son could be a big help. I know you’re torn. I also know the sleep deprivation. It’s hard on one person.
May God be with you and help you

You have made the right choice, your living conditions are impossible to cope with, how do you sleep, or have a normal life. Enough is enough! Your husband needs specialized care, that you can’t give him. Don’t feel guilty you gave it your best.

Ok I read that wrong. Your husband does need help. You need help just as bad as he does.
However try Medicaid.
Get some help for you and your husband. Try not to loose your home. I’m truly sorry anyone has to go through dementia/Alzheimer’s. Whether it be the patient, spouse or children. God bless and keep you.

You are in a tragic situation. First, refuse the guilt, you did not choose your husband's illness. Guilt is counter-productive and drains your ability to reason clearly. Has a neurologist offered medication therapy to control his symptoms, assuming he longer can work? He is likely eligible for Social Security Disability, and Medicare, with you designated as the administrator. Do you have his power of attorney for health/finance? If not, you can have the courts appoint you as his guardian. Transfer any assets from his name and apply for Medicaid. With Medicare and Medicaid you may not have to sell your home. CADASIL symptoms are unpredictable, it may no longer be productive or safe for you or your sons to have him in the home. You have been a loyal wife, but you have the maternal, well-being of your sons to fulfill, of which your husband can no longer contribute. Please don't allow your sons to feel neglected at a time they need and request your attention. CADSIL can be inherited, but is a rare disease. That concern can be addressed by your sons seeking a genetic test, medical universities have Geneticists on staff. You deserve for the rest of your life to have love and happiness. Please don't let it slip away by trying to control life's disappointments.

Lots of parts to this.
First it is not just a matter of your husband or your child but also of you,.
There are statistics that show often a caregiver dies before the person they are caring for. If you have had years of this it is getting to me more than you can manage. And it will not get better.
In your case placing your husband is becoming a necessity not a want. And I do not say that easily. I always said I would keep my Husband home as long as it was SAFE, Safe for me to care for him and safe for him to have me care for him. It is sounding like this is becoming unsafe emotionally, mentally and possibly physically as well.
Are there medications that would help lessen the anxiety that your husband has?
One of the things you should do, if you haven't already is talk to an Elder Care Attorney to see what options there are for you. An Elder Care Attorney will also be well versed in other things you can do, Medicaid, if your husband is a Veteran...
I am sure one of the thing in your sons mind (maybe all of them) is what if I have inherited this gene? If there is as you say a 50/50 chance that is scary. Personally I don't know if I would want to be tested. And the thought of the prospect of this might also prevent me from making deep personal connections in my life. I don't think I would want to marry or have children. Every headache would scare me.
Do your other sons live with you or nearby? Can the 20 year old stay with them? Or a friend for a while during the summer?
It would be great if he could put aside his feelings and help you out a bit, it sure would give you a break. But this might be a bit close if he is thinking this could be him in 20, 30 years.

Living with an abusive husband (emotional abuse is just as bad as, if not worse than, physical abuse) is not good for you and not good for your children. The reason (legit or not) is beside the point. If you can't HELP your husband, then you need to get help from somewhere else. I don't know the legalities of Medicaid and long-term care facilities, but I most definitely think you need to remove yourself from the live-in situation.

As for your son...I was afraid to leave my husband so I stayed the entire time we were raising our child. I'll never know if I had left if he would have turned out emotionally healthier or not. He is full of anger (and is now 45 and still full of anger), committed a felony when he was 22 and will never get a great job, and I don't know if he would have been the same way if I had left when he was still a child. (He is very much like his dad was.)

Your son sounds like he could use the emotional support of his mother. Oh how I wish I had been emotionally supportive of my son, but that's water under the bridge. I do not have a close relationship with my son. He says he doesn't blame me for staying with his dad (his dad was also abusive to him) and I'll never know if it would have made a difference.

We can't change the past, but we can do what we think is best for the present and future, for yourself, if not for your son too.

It's a hard decision to make, even harder to follow through, my thoughts and prayers are with you.

Just a thought from a son who has one parent who's been the primary caregiver for another for too long.

My dad wanted to do most or all the caregiving for my mother as her Parkinson's progresses, and after 10+ years he's so exhausted and angry. I've recently realized I needed to take over their finances, do all the Medicaid planning, generally take the reins, and it's been much harder because my parents have been living in a fantasy about what my dad can and can't do. (Also, yes, Medicaid planning!)

There was a summer I spent at home as an adult (much older than your son) that was very helpful, but I'd say looking back I wish my parents had created some healthy boundaries and expectations for my dad's caregiving years ago. In other words, I wish my dad had taken better care of himself. Not only would it be less painful for the family, but it would even have been easier for me in the long run.

I faced a lot of pressure to be a martyr growing up, while practical, sustainable help I offered was often rejected (things like managing caregiver visits or setting up medicine reminders). I'm not at all saying that's what's happening here, just that your son needs to create healthy boundaries, and he needs to see examples of what they look like. Whatever help you can give him now may be important, but also in the long run taking care of yourself will benefit both you and your son.

Oh, to add one more thing, they did the best they could. He's doing the best he can. So is she. I do see that.

Dear Marcymg,
We have a teenage daughter born with a very rare metabolic genetic disease called Celtic Homocystinuria. Children with this disease have a chance of 1-10 of living to be one year old. Children with this disease can not break down protein. In order for someone to have this disease, both parents must carry the gene. Children with this disease also can have heart attacks, strokes, and mental retardation. We are Blessed that she has been in the advanced Math and Science classes, and Honors classes in English and History and Spanish. She may have only 15g of natural protein a day, aided by a a special formula and some over the counter meds as well as a very expensive Rare Disease Medication.

We gave our now adult sons the opportunity to be tested for the gene when they were in their teens. They both chose not to be tested, saying maybe they would do it when the were ready to propose marriage to someone. We counseled them to have the genetic testing when they were teens. Nobody in my family nor my DW's family have had the disease. I am full blooded Irish, my DW is 1/4 Irish.

I am another story. I was diagnosed with Early Onset ALZ a month before my 57th birthday. That was 5 yrs ago. We were in the process of Estate Planning when I was diagnosed. I gave up all interest in our property and money was all put in a Living Trust in my DW's name. Our adult children aren't particularly worried about having that in their future, but we've tried educating them on ALZ. My DW and I can honestly say, we've laid out all the cards, and they must make their own decisions. We've never mollycoddled them. I hope this is helpful. Prayers are going up for all of you.

i believe it is time to place your husband in care. Having recently done this, I totally understand what a difficult decision it is. Doing so isn’t choosing your son over your husband. Your son’s situation is just the catalyst for doing something that needs doing for your own sake.

I wish i could tell you there was a trick for doing this guilt-free. If there is, I sure didn’t find it. But it’s been 2-1/2 months since I placed my DH and I’m finding that the closer I get to returning to the person I was before his dementia, the more the guilt recedes. I’ve helped siblings nurse 4 parents to the grave. That was hard emotional and physical work, but a cake walk compared to caring for a person with dementia. And the dementia you’re dealing with is way worse than my DH’s run-of-the-mill Alzheimer’s.

My DH can still do all the ADLs. He’s in care because I just couldn’t do it anymore. I was at the end of my rope dealing with his delusions and so strung out I was only getting 4-5 hrs of sleep a night. He’s starting to adjust to his new home and I’m beginning to let go of the guilt and anguish over my decision. I didn’t realize how much my own mental and physical health had been affected by the constant worry, frustration and suppressed (or not) anger. Btw, my anger was at the behavior. He’s still crazy by evening, but I can limit how much of it I have to listen to. I can block his calls when they get out of hand and then call him a time or two if the voice mail messages tell me he’s too upset. But there is staff there to deal with him. I can watch tv, sew, go to bed. I might even read a book soon. I haven’t done that in years!

Good luck to you. We are all in your corner. And definitely see an attorney that specializes in Medicaid qualification. I just did and it was a huge relief. I was afraid the money would run out and I’d be living in a tent eating dog food. Not the case, but you need a plan.

Wrong place for reply.

You have survived this far, it's ok to go on from here pivoting support to your child. Trust your instincts as a mother.
Also, I would recommend reading any/all books by Dr. Joe Dispenza who writes about down-regulating genes using meditation techniques. Your son might be able to create his own destiny. There are YouTube video testimonials where people describe overcoming "inherited" genetic disorders. It takes daily work to up-regulate a new code in the body, but the possibility exists. Just knowing you're not limited by this may be all you need.