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?
I don't think it is about choosing your son over your husband but choosing what is best for your family.
Do you have any support? There is a web site United Leukodystrophy Foundation(ulf.org) that has information that might be useful to your family.
My family had one of the Leukodystrophies. It is a hard road to travel. My thoughts and prayers are with you and your family.
When we were looking at Medicaid for Dad we were told Mom was allowed to own their house as long as she lived there as well as up to $23k in money assets. The goal is to provide assistance to the one person without impoverishing the other spouse.
My heart goes out to you and your family,
Does hubby even recognize you and sons anymore? Talk to the doctor about if he would meet medical necessity to move to a nursing home. Apply for Medicaid to pay for his bed. It will give you more time to have relationship with your young sons in a calmer environment than what all you have probably been living in for quite some time. Let dr know it is more than you can handle now.
I wouldn't sell the only asset you have. And you don't have to sell it to apply for a NH bed for him. Memory care, maybe/probably, would need self pay. So, let's say you did sell the home and could get $200 grand free and clear. That is not going to last very long at all for his care and he'd have to apply for Medicaid bed when that money ran out. Your equity in the home would be gone, you'd be renting somewhere, and then what? What money will be left for your own care? You can't even sell the house and know for sure there would be enough to pay for care for your sons if that was needed. They are young. As soon as they start working, instill in them the need to invest in long term care for themselves. Any debilitating illness early or late in their life could result in need for facility care - and the costs only get higher all the time.
I don't believe the insurance companies can ask about genetics at this point. They could not when I retired from my job as an individual insurance underwriter a few years ago.
Long term care insurance is getting harder to find due to the adverse claims experience of many companies that under estimated the potential for claims. Both my spouse and I purchased policies about 10 years ago and are glad we have them, seeing how expensive it was to pay for care for our parents and grandparents.
Your husband is where he is. It's not going to get better. It likely will get worse.
Talk to an attorney, save yourself and your sons.
Underwriters who review actual medical records can enter three digit codes for impairments that are reported to MIB. Not all impairments are eligible for reporting to MIB. Not all companies are members of MIB.
When I quit underwriting in 2018, there was no code for "genetic disorder." The usefulness of the codes reported from MIB is vastly misunderstood. If there is a code that suggests a medical problem that was not admitted on the application, we underwriters must develop that history by asking the proposed insured about it and obtaining the actual records. MIB codes alone are not used to make a decision and don't include sufficient detail to make a decision. IMO, the usefulness was limited to preventing fraud, and that usefulness was limited, since not all companies use MIB or similar services.
Be honest with your sons that you cannot take care of their father anymore and you will have to sell the home to pay for his care.
Include them in the decision making.
Let your son in college decide for himself if he wants to come home for the summer. Let him have a little time to decide. If you're honest with him chances are he's going to want to what's best for you because you're his mom. Good luck to you and I hope you find a good care facility for your husband so you can start living life again with your sons.
Do both of your sons know that they have a chance of also dealing with the illness in their own life? Is your youngest worried about what will be in his future or just can't deal with dad and dad's behaviors? If workable solution can't be arrived at soon, is there a place where your son can temporarily stay?
You aren't choosing between the two - you need a solution to the present situation. It sounds as if you have reached the point that you can no longer safely care for your husband. Please reach out to social workers in your area for resources. I did used an elder law attorney when my father had to be placed in SNF to get him applied for Medicaid. My biggest fear was my father using all the assets leaving mom little or nothing to live. While I feel I did most of the work running down documents, the attorney completed and submitted the application with the paperwork I furnished and did follow up with Medicaid. The attorney I used charged a flat fee - no it wasn't cheap, but you might be able to negotiate a lower price. We did. Your other choice may be to deal with Medicaid directly. If you fall under a certain income you may have access to legal aid - check your local community.
I don't know where you live, but you will need to find a facility that has Medicaid beds. My parents (mom still) lives in a continuous care community and dad was easily transferred from AL to SNF with access to a medicaid bed. Dad went into the facility and I told them that we were applying for Medicaid. We paid one month at full pay (which was $200/day for 31 days) and thereafter what was estimated to be his share (about a third of the 200 per day if that) - which ended up on the high side. After Medicaid was approved the facility refunded the overpayment. Medicaid was slow and dad wasn't approved for five months. But remember we weren't paying the full amount.
I imagine you are beyond stressed, but hang on even if it takes a while to resolve. If you are unsafe call 911 and advise the authorities of his diagnosis and that you can no longer care for him in your home. I truly hope it doesn't come to that. I wish you and your entire family the best.
It seems you would be able to stay in your home even if your husband is eligible for Medicaid. You would have to look into home ownership and Medicaid equity limits in your own state.
Unfortunately he is not the man you married many years ago. IT is waaay past time for peace and your husband to go to a mental care facility and then visit him there. My sister has a been case of dementia and is happy in a mental care facility, where we visit. So save your sons short life and good time with you, DO IT NOW
As someone suggested before, look into Medicaid. Just because you didn't qualify before, doesn't mean you won't now. The income limits are higher for nursing home care which he might qualify for now even if he didn't before. If that doesn't work, you could also look into a reverse mortgage if you don't want to move out of your home. My inlaws did this when their insurance wouldn't cover the feeding tube and pump my father in law needed. MIL still made a profit when she sold the home after FIL passed. Or maybe you'd prefer to downsize and have a place of your own anyways (maybe that'll give you something to look forward to).
The diagnosis of logorrhea, fits well for my husband, as does NPD.
It was my younger son who brought this to my attention. My older son is now married and has moved away, but recognizes the traits.
I also decided to leave. A friend had a spare room, so I left with my ESA Dog and am now dealing with the aftermath.
With my young son's lease up and the pandemic, he moved back with his dad in the house we both own. I could tell he was depressed, so suggested I rent a 2 bedroom apartment for us both, if he could contribute to the rent. This works, although the divorce process with an individual who has an inward mindset has been difficult. I'm retired with three pensions for income, and 401K/IRA's which I cannot touch. I'm surviving hand to mouth with the help of my younger son until the house is sold. My husband has refused to negotiate or mediate, so we've recently applied to the court for a decision. I'm very sad, but I had to leave for the sake of myself and my relationship with my children.
It is a hard decision. I do believe that you made the right decision, even for yourself, it is a very difficult disease to take on and he will get more help where he's at and you will still be able to visit him, but you also need not to have so much weight put upon you as well.
Your guilt will subside, I promise it is just a normal feeling, you're not feeling it because you are guilty of anything!!
And just know that you did make the right decision no matter how difficult it was.... blessings to you and your family
🙏🙏🙏🙏🙏🙏🙏🙏
First, please seek out three important professionals you can trust - an estate attorney, a CPA, and an internist who will refer you to and confer with other specialists such as neurologists as well as write orders for in-home visits from social workers or therapists who can evaluate your husband. You cannot make good decisions without sufficient and accurate information.
Second, call your son and let him know you love him and care about him and ask him to let you know exactly how he is feeling. Let him and his brother both know the steps you are taking to help deal with their father's illness.
Third, buy long term care insurance for your sons now from a financially sound insurance company; ask your attorney or CPA for recommendations. Keep paying for it as long as you can and in your estate planning, make sure that it continues to be paid for out of your estate. Regardless of whether your sons carry the gene, long term care insurance is invaluable these days. In fact, it's one of the nicest gifts that you can give your children. There is one caveat, however. If they have tested positive for the gene, it may prevent them from qualifying. Frankly, once a positive response is in "the system," it can crop up when least expected and desired. I would weigh the desire to know against this unfortunate liability.
You are fighting the good fight. Now get some seasoned colonels and lieutenants in the battle with you. Generals alone do not win a war. Bless you.
Stage 1 - Denial of the problem
Stage 2 - Anger (the "why me" or "why us" feelings)
Stage 3 - Bargaining (all those different, ineffective treatments)
Stage 4 - Depression (sadness and some guilt over the reality of the loss)
Stage 5 - Acceptance
It seems you are experiencing stage 4 sadness regarding the situation. On a good note, you are making decisions that help everybody involved: your husband gets professional care, you can get a good night's sleep and make sure your needs are met, and your children are making strides for their lives.
I am not sure if there is a genetic test to determine if your sons have inherited this disease from their father. If so, help your boys to get genetic testing to determine their risk factors. Then, they can make plans for their own lives based on their genetic inheritance.
In my case, my family on my dad's side has a huge problem with chemical abuse/dependence. My dad is a narcissist and abusive alcoholic. His mother was also a narcissist and addicted to uppers and downers. Her father was an alcoholic and probably depressed - took his own life by jumping in front of a truck. I do not have a substance abuse issue since I decided NOT to drink and decided to keep a healthy group of people in my life. I have 2 daughters who are aware of their potential genetic heritage. 1 drinks sparingly since she is a small woman. 1 drinks probably too much and has mental health issue - but she is an adult woman who is married and living her own life. Do I fund care for my daughter with mental health issues? No, she is an adult and aware of her needs for treatment or a different lifestyle - and has chosen how she wishes to live her life. I try to respect her choices even as I see how her choices hurt her and us, her parents.
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.
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.
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.