H.P. asks from Guilford, CT on October 06, 2008
How to Support My Husband?
I need a little advice on how to best support my husband. His mother has battled mental illness for years however has been able to function and maintain normal household skills and responsiblities such as cleaning, grocery shopping and meal preparation. About 8 months ago she was diagnosed with early dementia and during this time has displayed a drastic decline in functioning. She can no longer drive, grocery shop, clean, prepare meals therefore it all falls on my FIL who is emotionally spent. She sits around the house all day depressed, threatening sucicide if no one comes when called, ordering stuff off QVC and the home shopping network, calling people but dialing the wrong number and ticking off random people. They have tried in home care to help during the day and have even looked into adult day care programs however my FIL can not afford to maintain the expense unless he files bankrupcy. The only way he will find any relief is if she does something drastic and gets placed in a psychiatric facility at which time the state would pay for her care.
So now to my question...my husband is a very strong person who keeps his emotions in check. He doesn't like to open up about what is going on because he is afraid that once he releases some emotion he won't be able to rein it back in especially because this situation could continue for 6 months or 6 years. Because of my background (school psychologist) I often retreat to what I know best which is being theraputic...this backfires because I am told that all I want to do is fix a problem that can't be fixed and that I don't understand because it isn't my mother, then he shuts me out even more. I guess what I am looking for is real life stories about how any of you survived a long illness with a parent or in law and how you supported your spouse or how they best supported you. Sorry this is so long...Thanks in advance.
N.M. answers from New York on October 06, 2008
I am a social worker on a geri-pscyh unit. I see this all the time. First, there are no psychiatric facilities that you would be able to place her at. The state run hospitals are not typically meant for someone with dementia, even if they also have a mental illness diagnosis. And to get into one you need first to go to a regular inpatient psych unit and then prove to the court that you need a state hospital (not easy), and then wait up to a year to get into one. If she gets hospitalized it would likely be temporary, unless meds could not control her aggression.
The best bet is to call the Ct Homecare Program for Elders 1-800-445-5394 (she would have to be age 65 or older) or try the pilot program they have for the disabled if she is younger. This program can help get her onto T19 or a state supplemental income, but not take away your FIL portion of assets or home. Then it helps to pay for help within the home and adult daycare services. It's aim is to keep people living at home as long as possible.
It sounds as though your FIL does not have money for assisted living. They run about $5k a month.
The only other option is placement within a nursing home. In your area of the state you have Branford Hills, Guilford House, Fowler's. You could also try Regency House in Wallingford. Masonic has a long wait list, but if someone in the family is a Mason then it is worth getting on their list. In New Haven you have the Mary Wade Home, the Jewish Home fo the Aged. You also have Talmadge Park in East Haven, and Laurel Woods. Even if your mother in law does not need a nursing home placement right now, she needs to be on wait lists. Depending on the facility, wait lists can be from 3-6mo, or 1-3 years. CT has very strict wait list laws, even emergencies cannot jump them, so someone who needs placement quick does not end up at a place that is the "cream of the crop". It's best to plan ahead now.
Now, how to support your husband...he's had to live this his whole life and may be bringing back some not so nice memories, not to mention that he cvan be falling into the "family roles" they had when he was growing up. He's right, it's not a fixable problem, this will only get worse, not better. The best thing you can do, is listen, do what he allows you to, but remember it's his family not yours, you can't fix it or take over. I'm sure it's all stuff that you know from your own profession. He may not be too thrilled with the suggestions I gave you, but honestly no one ever is. However, being prepared may be the only way you can help.
p.s. in CT the look back period for real estate is now 5 years (since Feb 06). The Alzheimer's Association has a list of elder care lawyers on their website www.alz.org/ct
1 mom found this helpful
M.S. answers from Syracuse on October 07, 2008
My stepdad is going through this with his mother. In addition to hiring home health aides, they have gotten support from her church to send people to spend time with her and do things with her. The police also check on her (she had 2 car accidents that she caused but can't remember). He lives thousands of miles away from her so it's difficult for him to deal with. Emotionally speaking, he's a bottler and this is hard for my mom! But I think it helps him if people other than my mom bring it up with him. Also, having a hobby (he built a darkroom and does photography) has really helped him have an outlet.
My daughter's daycare teacher actually lives with her mother who has dementia and she can't even leave the house anymore unless her mother is sleeping. She has hired some trustworthy people, like single friends or her daughters' friends, to come spend a few hours with her mom so she can get out and have some time to herself on weekends - I think there are people who will donate their time to someone too (college students looking for volunteer work, etc.). Financially, it's very tough! I know she works 2 jobs, is totally exhausted all the time, and still can't make ends meet. What a hard thing for your family to be going through. Best wishes to you all.
A.H. answers from New York on October 07, 2008
My father in law is a problem for us too. We went on Craigs list and put an ad for a polish housekeeper/aide. She comes in 5 days a week from 9 to 3 .. we pay her off the books $400 a week. She takes care of FIL while mom in law goes shopping, takes a shower, maybe takes a walk just to get out. Aide cleans the house, puts the laundry on .. and prepares lunch and dinner. Mom in law just has to throw dinner in over. It works great.
** Mental Illness runs in families.. so watch your husband and child for any signs! Meds usually help out.. don't know if your mother in law is on meds.. and they can keep changing them until she gets one that works. Also if she goes away somewhere.. you'll lose the in laws home and all savings first before the state starts paying. If the in laws have a home.. sign it over to son now. The state goes back 2 years to see what the in laws have... so if your husband owns the house for 2 years.. then you could put them in a state facility without losing the home.. this is why we went home care
L.S. answers from New York on October 06, 2008
Thankfully, I don't have any experience with what you're going through. But one thing I do think of is maybe your FIL can go on Craig's List or use references to find an attendant or companion who can be home with her during the days. He can call hospice, too, and get information from them. There are a number of hospice centers in the area. As for not being able to get her in someplace unless he files for bankruptcy, that doesn't sound quite right. Call some eldercare places and get some information. Since you're home during the day, that might be a way that you could offer some support - find out more information and some options for your husband and in-laws. Good luck.
M.O. answers from New York on October 07, 2008
Please find a good elder care lawyer. My father has alzheimers and parkinsons and we desperately needed a full-time in-home aide to help out. We thought that we didn't qualify for medicaid (medicare? - I get them mixed up) without having to go bankrupt first. Turns out that's not the case.
Long story short - but please get a good lawyer - in NYS (don't know about others) your house is protected so you won't go homeless. There is a certain threshold for assets, but medicaid won't touch your FIL's Social Security, pension, IRAs. Your MIL's will be subject to some extent to pay for help, but not all of it.
We went to Steven Shurkman, a lawyer in White Plains, NY (Keane and Beane Law). It cost a few thousand, but it has saved my parents tens of thousands in home care - plus was a huge load off of us kids since we were spending nights and weekends there. (Fyi, the first lawyer we went to was completely useless - no good, so you can end up with bad advise which we did for a year.)
Good luck - this is such a difficult time. My prayers are with your family.
M.R. answers from New York on October 09, 2008
First I want to say that mental illness in itself is very draining for a family to begin with and for your FIL to stick it out has to have been extremely difficult for him.
My father began having symptoms of not being able to handle everyday tasks in his 50's and my mother shrugged them off saying "your father was never good at paying bills, keeping a house, cooking, etc. He is just fine." But after some time it got worse he was forgettful and doing strange things (leaving the house and walking into neighbors homes uninvited). Once others saw differences my mother took him to get tested. This was almost 10 years ago. After being tested for Alztiemers and Dimentia my mother and his DR looked into case studies being done for ALL types of dimentia. He was diagnosed with Pick's Disease or Frontal Lobe Dimentia which is a type of Altziemers that occurs in random people as early as their 30's. Be sure they diagnose what is wrong with her and not just rely on the fact that it is a mental illness. My mother who worked needed help and could not afford it. She called hospice and at first they wanted nothing to do with it because he was not on his deathbed. She did get the number for Catholic Charities and they help with getting in home care for those that can not afford it but need it. She was approved for 4 hours M-F free of charge and she had him in some adult programs at the local assisted living (he got on a bus right at the house and was dropped off there too). Once he got worse and had to be in a diaper the assisted living wouldn't allow him to go there anymore (he had lost his ability to talk and show emotion other than anger pretty early on). Once that happened she was reevalutated and given 6 hrs a day. He was bedridden for about 6 months until his passing this past February. It is so difficult for the spouse the fulltime caretaker and when that is a man it makes it even worse. Men are not emotional beings in general and when they dont know what to do to fix a situation they become depressed and withdrawn. Your FIL and your husband are having a difficult time grasping all that is happening. I think once you get a true diagnosis it may make things a bit easier. Let your husband know that you are there for him and you will do what you can to help with getting answers for him and your FIL. My brother had such a hard time he isolated himself from our family and that was so difficult for my mother. Good luck