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My oldest son recently told me that his younger brother, 20, who has a summer break from college coming up, confided that he wants to come home to be with me, but can't live with his father, who has severe frontal lobe dementia due to CADASIL. For years our 3 boys have lived with their "quirky" father who seemed socially vacant and not available for any of us emotionally, unless it was by his unpredictable anger that caused such destruction to us as a family. Now he's 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.


But, I didn't realize that my son, who's trying to find out who he is, yet is still a child & needs his family, is so torn. Now, without resources to place my husband in memory care I have to decide to let go of him to the care of others at great loss, ironically in particular, the sale of our home. If I don't do that, I feel that I'm going to be committing great harm to my son by shunning him from returning home; I have incredible guilt, but I choose my child over my husband. To make matters worse, CADASIL is inherited, and my boys have a 50% chance of having the same disease as their father: I had wanted to save as much money as I could for their long-term care should they inherit the autosomal dominant gene. I feel guilty...no matter what decision I make. Has anyone else been confronted with these choices?

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.
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Reply to MJ1929
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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
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Reply to Daughterof1930
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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.
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Reply to JoAnn29
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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.
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WearyJean Apr 9, 2021
I love your answer, Lealonnie! "Please don't add guilt to the already heavy load!" Marcy - I'm praying for you that God will give you the wisdom to find the best solutions for you all.
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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.
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Daughterof1930 Apr 6, 2021
I agree with you. My adult son has a brain injury and will always live with us. But being here doesn’t hold him back, he has a job, a car, a savings, pays us rent, and enjoys a positive life. There are endless reasons an adult child may come back, and many times it’s good for all
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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.
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Reply to Midkid58
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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
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Reply to wiseowl
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I think you are right in placing your son first. Get Medicaid and place your husband.
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Reply to Bridger46164
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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.
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Reply to disgustedtoo
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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.
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