My wife and I are 40 and she is "at risk" for HD. We've been married for 16 years and have three wonderful boys, 2, 8 and 16. I didn't know she was at risk when we got married or had our first two children. I think (not positive) she did but didn't fully understand the ramifications or was in denial. She was pregnant with our third child when her mother tested positive for HD and the gravity of things starting kicking in. She’s a caring wife and mother and I have no regrets. Over the years, our relationship has really grown into a loving caring partnership and I have told her I will be there for her no matter what. Her mother is in stage 4 and lives with us and my wife is the primary care provider. That’s tough to begin with as our boys are extremely active with sports and we lead a very active life. Over about the last 6-8 months I’ve noticed my wife has become very quick to anger, yell and be irrational at times, uses foul language much more, is forgetful, is having difficulty managing the house, daily activities and prioritizing and naps during the day but can’t sleep at night. I know these are potential symptoms but I’m not sure where to go from here. I know seeing her mother in this state has to be weighing pretty heavily on my wife. It’s been tough and her mom has started regressing. Her mom started showing symptoms probably 10-12 years ago (nothing we picked up on) and she is 64 now. I’m not really sure what to do or who to talk to. Should I see a doctor, physiatrist, or lawyer? Although subtle, I’m concerned with how my wife is changing. I’m extremely concerned for our children and concerned financially for our future and what all of this means. We have discussed testing and for right now she is hesitant and I’ve told her I will support whatever decision she makes. There are also financial and insurance matters that come into play with the testing. This is all very new to me so I’m looking for a starting point because I’m not sure I’m going to be able to manage all of this without help. Thanks

Hi and Welcome.

I am so sorry for what you are going through. Your situation sounds a little similar to mine. We have 2 kids, 6 & 9 - we knew my husband was at-risk but we were completely in denial. One thing we were advised to do was to get insurance in order right away - long term care insurance. We decided to have my husband tested when the "does he or doesn't he" began to occupy our thoughts full time ("is he doing this because of HD or because of some other reason", etc.). There is really no way to know without testing - because the symptoms can always be rationalized to other reasons. With or without testing, your wife can do some things to help - there are meds that can help with anger - exercise and supplements can help as well - fish oil, blueberry... If you search on this forum you can find information regarding that.

I am sure others will chime in with other advice. This is a wonderful place for info and support - it is good you found your way here...

I hope this doesn't sound callous, but your first stop should be to your insurance agent to see if you can get long term care insurance for your wife. Pre-existing conditions CAN be the reason for denial on LTC, so if there's a confirmed diagnosis she will probably not be insurable. Believe me, the cost of this coverage is worth it if diagnosis is confirmed. My wife has had in-home care for four years now, and all of it after the waiting period has been reimbursed, $130,000 worth to date.

Your wife could simply be worn out emotionally from all that's going on around her. A full medical check up is called for after LTC is secured. Genetic testing is up to her, and supporting that decision is up to you. Good luck and courage.

Good advice about getting insurance in place (long term care, disablity. life etc). In addition to the supplements, also maybe she should consider an SSRI medication to help. They have been shown to be neuroprotective in HD. Don't rush into testing...be prepared financially and emotionally. Sorry you're going through this.

Not callous at all. should I get the LTC now or wait? She isn't anywhere close to needing extra care and is for the most part doing fine. Does it make sense to pay for LTC for 20 years or so before it's needed? Should I assume it will hit her around the same time it did with her mom? Should I just continue to monitor her and if things start to get worse get the insurance ? I am going to get her a life insurance policy. I have a large one and I need to get one in place for her although my carrier knows the situation and will not provide her life insurance. Also, I've researched that getting LTC for someone who is HD at risk can be difficult. Should I begin separating assets and look into Medicaid at some point? I do feel that we have time to plan this out the right way. Like I said l have a lot of questions. Would an elder care attorney know the ins and outs of this? Thanks for everyone's insight

Welcome to the forum. Again, sorry for your reasons for being here, but so glad you've found this place.

Yes, many advisors say your 50's or early 60's is the ideal time to get LTC insurance. But if there are health issues that can come on sooner, that is an exception. If you wait, she may not be able to get it. If she DOES get a genetic test and is negative, you can always cancel it then. But as of now, she's going to have to shop around big-time, due to her Mom's diagnosis. (Most questionnairres ask about family history of hereditary diseases, or if she's been recommended to seek additional testing for any reason including neurological concerns; if you withhold info they can deny coverage when the time comes; but don't volunteer anything more than IS asked). Yes, it's expensive, but do the math on how much long term care can cost; and even if you are superman she'll likely need some outside care at some point if she gets HD. Most policies allow you to use the money for care in-home too. Also try to get one that allows the coverage to increase with inflation.

Talking to an elder-care attorney is probably a good idea too (advice I have not yet taken myself); they can talk about dividing assets/Medicaid, etc. Some people do that, but most find other ways.

On the other issues, even if your wife does have the HD gene, I don't believe that what you are describing would absolutely be considered symptoms. And even a good neuro may not be able to say for sure. But there are a lot of general "wellness" things that she can do no matter what, like taking time for herself including exercise, other stress reduction techniques including having someone else relieve her from taking care of her Mom for at least a few hours/wk, possibly an SSRI antidepressant depending how bad it is, and there have been articles suggesting fish oil helps with stress in addition to preventing HD in mice.

I remember being told that the difference is nominal between getting LTC early and paying lower premiums or later with higher premiums. I would opt to get it sooner because of the situation - advice I didn't take myself and regret because when we were ready to test we just wanted to do it and didn't wait to get things into place.

Dr. Barbeau's advice to me was if I choose to have children to not have too many and to have them early in life. I was 28, 29, 30 for the first three and I got them though life without too many problems except alot of depression which should have been handled better. I had 2 miscarriages and then the last child when I was 34 and this is too old because he was in grade 9 when HD became a problem.Dr. Barbeau's advice was very good.

At least in my case, when I got LTCI for myself, I had to have a complete physical and provide for a release of medical records. Insurance carriers base eligibility and premium amount on that information as well as age. Since I had high blood pressure (treated) I had to pay more than someone with perfect health. I tried to get my wife LTCI at the same time, and she was declined by all carriers since there was HD on her record. I don't believe they asked any questions that would have ferreted out whether she was at risk for HD, but things may have changed, and it may depend on the insurance company. We used a broker that specialized in LTCI. I was very fortunate that, a few years later, my employer offered a group policy for LTC which had very few restrictions on eligibility for employees and spouses and could be continued after retirement. I signed my wife up as soon as I could, and as I said in my earlier post, it was a life-saver.

My advice is to check into LTCI now, see whether your wife will qualify and what it costs per year. Avoid volunteering information about hereditary risks (don't lie, that's grounds for cancellation). Then think about what in-home and institutional care will cost IF your wife has HD. In my case, it was a no-brainer, but you have doubt whether it will ever be needed. If your wife was agreeable, I'd suggest getting the LTCI now and then getting genetic testing. You can always cancel the LTCI if you think it's too expensive and you get the good news that it won't be needed for HD.

Life insurance is for the survivors. I don't see any point in your wife having any life insurance except for the near-term financial need you may have for child care in her absence.

Yes, get LTC insurance now. Waiting increases your chances of being rejected.


Get life insurance too. Expenses can drain your assets and life insurance can replenish that....not to mention that life insurance can help you get on with your life after HD.


Do not take SSRI medication (for depression) before getting insurance. The mere fact that you take SSRIs can disqualify (or cost more) a person in some cases because it suggests some issues that tend to increase assisted living/nursing home stays.


The idea of canceling LTC later is a risk I would not take--why put yourself at-risk--don't we continually talk about being at-risk? There are many illnesses other than HD that can send us to a nursing home.


For the record, LTC insurance paid over $220,000 for my wife's care.


Think logically and carefully. See your elder care attorney first--plan your life and prepare for the possible issues are facing. Then see your insurance agent--think about how much you need. You do NOT want to see a psychiatrist (or other doctor about HD) until you have insurance in place--don't set yourself up for rejection.

My husband and I had the same talk over 15 years ago. We decide to live until the time came when we questioned does he or doesn't he. We got a disability policy and got most of our ducks in order. We could have done better with being better with our finances.

Financially we did what we needed to do, covered him with insurance with disability and long term.

Insurance is for the survivors, and with all the planning we did I have still lost my 401k because of his bad business decisions and we have little in savings. Get the most insurance you can to replace what you will loose. We are one of the lucky families, we got SSDI approved, we have a private disability policy and I am able to stay at home to care for him. But we live on half the income we had and little in savings and I no longer have a 401k. Insure to the maximum so the survivors can replace losses.

A side from the technical, you need to think and remember that you will loose your spouse so slowly you won't notice until it is too late. Make sure you do everything you wanted to do together now and not later. I figured that out way too late and it caused a major depression.

Thanks everyone. Great info. I'll start my research and get things in order.