Unless our PCP, Neuro-Psych Dr., and Case Manager with Area Agency on Ageing—together or separately, can come up with a workable care plan, we are on a one way track to a crisis. These are the realities. DH is declining. That is being speeded up by his smoking. Depriving him of the cigarettes will trigger aggressive behaviors and/or elopement. I cannot MAKE him stay here. I will not confront aggression physically. (He’s bigger than me and I’m on braces and crutches.) I have him on waiting lists at 2 facilities with locked units within the County, that I can get to for visits and advocacy. The waiting time however, is not as was originally indicated (I was clear when asking that we were discussing the Dementia units). Based on the original information, I have been rationing a small supply of cigarettes to get him through, but the waiting lists are not a couple months or so. For one it’s a year, and the other will not be until one of the men already there passes, and all 4 are pretty healthy, plus anyone In their adjoining facilities will get priority over the list. I have checked into one last Day Program that was reccommended but his needs and their services are not compatible. After this month I can no longer provide any cigarettes. Property Taxes and Homeowners Insurance must be paid. Plus there are all the other normal everyday expenses. A crisis would get him admitted to the hospital and from there placed—probably out of County, where I cannot get to, to visit or adequately advocate for him. If anyone has any ideas on how to change the course of this wreck, please speak up.
Carosi, it's time to save yourself. I got to that point, too, and found that the social worker was my best advocate. I literally begged her to step in and help. She did. It wasn't the best placement, but otherwise I would have had to wait for a year. There comes a time when it is a question of your survival: you've done the best you can, and you can't do more than that. I'm rooting for you. No one can fault you, and if they do, let me know, and I'll add them to my hit list. Just kidding.
carol i agree you have done an extraordinary job of caring for DH. but with this new set of circumstances and possibly aggression if no cigarettes, you must take the option to protect yourself now first. as suggested by mary please contract the social workers again and ask for a sitdown powwow on how to speed up placement. i am sorry you have to maybe place him further away but for now its the only option. you can get on a waitlist for something closer. and maybe somehow you can manage to get to visit with the help of the social workers input. divvi
Carosi, my heart goes out to you.... Most of us have similar situations and frankly, there are times, Many times, that I want to pack a bag and leave it all..Mentally, I am worn out, physically tired all the time and wish for some happy times before I get much older...We have no life, its dementia's life.. It takes over completely..We cry too much, worry about things that in a better life should be worried about as a couple.... We are now single,with the world waiting for our next move... In My case, I will have to be private pay.. DH adamant about not ever living in a NH.. The dr. so slyy diagnosed him that I came home and researched to find out really what he was saying...Now the only way I feel I can get DH in a NH will be if a dr. says he's a burden to himself or needs to have treatment available only from 24/7 care...I can't get anyone to see that my health is in jeapoardy too... If anyone has had this situation, I'd love to hear from you...It will take our investments, savings and other but at this point, I'm willing to give up creature comforts for mental stability....Do I have to become a complete wreck to get help.??? Sorry to vent so much but Carosi's message touched me and I feel for her so much..I wish I had an answer for you Carosi... I send you kudo's and hugs for your courage... Peggy
Carol-you have put up the good fight for so long. If you feel you can no longer safely care for your husband let him be placed and hope he can be moved closer to you later on.
Peggy, I think that many of us have found ourselves in your position. Somehow, you have to find a way out, someone to help you. Suggestions: a social worker, a psychologist or psychiatrist, a different doctor, a clergyman or priest. You may just need some space and could get it by hiring help, daycare, respite. I think I'd start with my own doctor, and if he didn't help, are you close to a university hospital? Here in Vancouver, Canada, our university hospitals have all sorts of backup clinics who know what's out there in the system to help you. In my case, my husband had a spontaneous compression fracture of his coccyx and got admitted into the system via the hospital emergency department. It's still a battle, but at least if you're not doing duty for him around the clock, you have a fighting chance. It helps if you can find someone in the system who cares. The social worker was one who did.
carosi, speak with a social worker either at the Area Office of the Aging, local hospital to help you find what options may be available. If all else fails, hire a geriatric care manager if you can afford it. Yes, you may have to place him in another county if that's all that;s available. Will anyone volunteer from your church/temple group to drive you to see him? Or a neighbor, perhaps?
Peggy, I have chronicled our experience with the neurologist who saw DH. Never told me what was wrong with DH - looked at the brain MRI and said "I can't detect anyhting unusual for a man your age", advised me to buy pepper spray to use in case he got more violent and prescribed Namenda. I called hm 2 days later and asked what his diagnosis was and his nurse told me "pre-senile dementia". I had no idea what that meant.
Financially we are in the same boat as you are-we will have to spend all our retirement savings to care for DH before Medicaid kicks in and I will have NOTHING left for my health issues. Get another doctor to examine him and give you a definite diagnosis. If you are not near a university hospital or a NIH memory center, it may be worth the expense to get a second opinion. That's what we did.
To Mary75* and LFL... thanks so much for your advise..I am busy noting all your info and will set it in motion.... Today I just felt like all was hopeless but thanks to you, I have something to build on and a hope that I can retain some sort of life too.. Granted, as you say, it takes work, but I'll get it started. I Hope Joang knows how very important this web site is to all of us.... Caring and sharing with each other is what keeps us going... Bless you all Peggy
peggy, my email address in in my profile. If I can help you personally,please feel free to contact me. Thank god for joan and all the wonderful members of this website...I wouldn't have been able to do this for 3 years. And our journey has just begun.
a good elder law attorney can work wonders,ya don't have to go to the poor farm if you get a good one,trust me I've been thru this three times,mother ,dad an now LO
od don--if money is in a retirement account, there may be nothing an elderlaw attorney can do. If it is moved, it is going to be taxed heavily and there may be no benefit to trying to "spend down" to qualify for Medicaid. This may be Peggy and LFL's situation.
thanks MarilyinMD, yes, our moey is in IRA which we were advised was a wise decision for investments several years ago, before dementia. Elderlaw attorney can't do anything about this. Don't know what peggy's situation is.
DH has IRA and the rest of our holdings are held in a trust??? I think you're right, I may need to see a good Elderlaw attorney... there is one here in town that offers the first consultation , free.. Might be good place to start... I have all POA and handle all finances.. started that way before anyone but me , knew DH had anything wrong.... that's about the only thing I've done right in this whole affair.. Thanks, all... You're my lifeline...
Carol, I'm sorry you are in such a difficult place, but you need to come first, because without you, Ron could end up anywhere. At least if you have to place him out of county temporarily, he still has you. So do what you need to do....I'm sure it will be best for both of you.
I am not an attorney and I do not play an attorney on TV. However, you might be able to roll over the IRA into an annunity.
He rolled over his IRA about 5 years ago into an annunity and it was no problem and didn't have to pay any taxes or penalty. Our attorney suggested he place it in an annunity that makes monthly payments when it expires in Oct. My dh is 64.