I haven't vented for a while and I can tell. Do you ever feel like your personality is changing and you are losing yourself in all of this mess? I feel like this disease is going to kill me before it kills him! No one wants to be around me anymore and I feel so alone. If it wasn't for you all I don't know what I would do. The dr. isn't even helping anymore because she says that I am on the highest dose of anti-depresant but for some reason she doesn't want to change the kind. Either because it cost more or something because I lost my health insurance in the middle of all of this.
When does this ever end!!!!!! How long can I survive like this? Has anyone ever asked themselves that? I hate this disease, I hate my life, and I am so tired and stressed and everywhere I turn I can't get any help. It is like everyone is systematically making this impossible for me to deal with. He beat me up and I can't even get him into a NH, are they waiting until he kills me????? They say it is because he is not physically bad enough for medicaid to pay for it. That is the same answer I get from everyone.
His daughter doesn't even want him. The apartment manager won't let him stay here by himself so I can't even go anywhere even if I had a car. I dream about having a "normal" life with a "normal" husband who will take care of me for a while. No one cares about the fact that I am a human being with needs and desires, and heart and a soul who feels like she is dying slowly every day.
What happened to that knot in the rope? Mine has frayed to the point where it won't hold a knot.
deb, I am so sorry you feel so bad and wish I could do something to help you. I don't understand why beating you up wasn't a good reason to place your husband. I don't know how many agencies you have tried but maybe you can get your doctor to write a letter and tell them just how bad your husband is and how it is affecting your health. As for the rope it is right here with a big knot just for you. I will pray for you and hope you will get help soon. Take care of yourself and God Bless.
Your situation is completely unacceptable. I don't know what agencies you are dealing with, but you should be getting much more help, considering the the level of danger to you.
Others are more experienced with your type of problems than I am, and I hope they will be along soon to offer advice. What I can tell you is to make some phone calls ASAP:
The Department of Elder Affairs in your State - explain the situation, and they should be able to point you in the right direction for help.
The Alzheimer's Association - Insist on speaking to a social worker in your area
Your husband's doctor - tell him about the physical abuse and that you cannot live with it
Your doctor - Jean's advice about getting your doctor to write a letter to the Dept.of Elder Affairs that you cannot take care of your husband anymore because of the danger to your health. Make sure he includes the part about him being physically abusive.
I'm sorry this is such a bad time. Everyone has given you good advice. My first line of defense is my own doctor who cares about my health and knows how the system works. You should have a social worker involved, too. Do you have a local community health centre who could be your advocate? Help is out there.
Deb, I am so sorry for your stress....and yes there are days I feel I am no longer myself and can't deal with this and I HAVE HELP! So given the situation it's no wonder you feel this sense of hoplessness and helplessness.
I too have been frustrated about not being able to find the appropriate "resources that are out there". If they're there, I can't find them. Even the ALZ Association has not been any help at all. But having said that, you absolutely need to keep looking or find someone who can/will help you because you do need help. What happened-I thought APS was evaluating the situation and was going to help have him removed from your home?
deb you may want to consider contacting the local chapter for the Bar Association in your closest area. ask for a referral for an elder law atty i guess or domestic abuse? atty who could maybe help you or guide you to getting guardianship over your spouse so you can place him even against his will if he is a viable source of danger to you and or himself. its what i would do. some of the attys work pro bono for their credit hours and may can help you for free. or a minimal charge. it may be worth it to pursue guardianship at this point. it may also help get you some govt resources once you document all the violence in a legal form using an atty.
Know the guardian and conservatorship laws for your state. They vary by state and in some states one will have onerous reporting requirements compared to the other.
Thank you so much for all the wonderful suggestions. I was beginning to think there were none and a friend of mine just today told me that just pray about it and there will be something come up and viola!!! You all! I would have never considered asking my dr. to write a letter, that's #1 on my list. The Department of Elder Affairs here I think is called senior care unit but I am not sure. The other problem I am having is New Mexico is so backwards with everything they do you would think it was the country of Mexico ;0( Anyway, LFL, I thought APS were going to do something too but they were the first ones to tell me there was nothing else they could do, they would have to wait until he does it again and I have to make sure I call 911 this time. paulc, I have never even heard about guardian and conservatorship laws, I just ASSUMED that I was his guardian so I would never have considered that.
joan, I already told his dr. and the social worker at the dr. office. I don't even know if they believed me. My H doesn't ACT like he is that bad off when he sees the dr. All those @#$% questions that they ask he can still answer so they say "OK he seems fine to me!" Stupid people and then they turn around and give him meds for all kinds of things including the Alzheimer's that they act like he doesn't even have. I don't know why they won't verbally say what he has because it is right there in black and white on his records. I think that could be one reason why I am having so much trouble getting any help.
Thank you for the rope, the last two months has been a ride and a half! Thanks for being there!
Oh, Deb, I feel ya! I also quit work in 2010 and lost my insurance a year later. I often wonder if this will kill me before him also. Sometimes I would like to help him along. He has just started getting aggressive everyday for about the last week. He is end stage according to the doctor. He can do absolutely nothing for himself except walk and that has begun to deteriorate. He cannot talk anymore and he couldn't answer one Q on the MMSE if his life depended on it. That which does not kill us makes us stronger. I'll pray for strength for both of us!
Linda Mc, Thanks! WE ARE GOING TO NEED IT!!!!! I can't believe how similar but how different you H is and mine is. I am glad that I am not the only one that would like to help him along. The Q on the MMSE he has a lot of trouble answering but the person giving the questions I noticed this last time coaxed him and he finally got the answer so she said he past. Bull!!!! He didn't pass. My H can walk but I don't know how he can stay upright, he still can do all his own dressing and stuff like that, I think they called them ADL's or something like that. He doesn't talk hardly at all, I would say he is in the last stage or so but I can't get anyone else to agree. He is so much different at home.
but what you said is something I've seen come up here many times: WE COACH OUR SPOUSES SO THEY CAN GET A HIGHER SCORE ON THE MMSE. WE*SHOULD*NOT*DO*THAT!!! We want them to get a lower score so they can get the help they need.
When the person who gives him the test...coaches him....it does not help anyone especially you. You need to speak to that person and request that they do not coach him...tell them you want an accurate assessment...not a false one.
Deb have you gone to the web sites that tell you the various things that happen in the various stages. The Alzheimer's place is good and I always liked the Fisher Foundation site...it was the most accurate in evaluating my dh. He was a text book case...when he got to stage six...he really went fast down hill...don't believe he reached stage seven until the very end.
JudithKB, thanks for the Fisher Foundation site, I always can use all the knowledge that is available. My head believes that he is going down hill quickly but I think that because we see them everyday it is hard believe.
Deb, I hope you are able to get some much needed help very soon. APS was a joke in my state as well. Lynn was hitting me daily, but they would only involve themselves if Lynn was in danger, they didn't give a damn if I was. Crazy!
I had to get court appointed legal guardianship of Lynn for any nursing home here to even consider taking him. Without it they could not have kept him if he said he wanted to leave. I was stunned that such laws even exist!! Clearly the laws need revising where dementia is involved.
Our social worker was a Godsend for us. She wasn’t part of hospice or any such organization. She was appointed to our case when I refused to stay in the hospital against doctors orders because I had no one to take care of Lynn. She was shocked I had no help and started the wheels rolling to getting me a little in home help.
It didn’t work out well as Lynn was too aggressive and they would not subject their staff to his fits of rage. Who can blame them really? She is the one who pushed me constantly, but gently, to place Lynn.
Every state calls it something different, but every state does have some sort of agency for the ill and elderly. Contact them to see what is available to you. If you still have trouble and your doctor is no help, call your local hospital and ask to speak to a social worker.
Nikki, that's another thing I didn't think of, the hospitals social worker! The NH evaluator actually said they didn't want him in the NH because "they have elderly women in here and if he is violent we don't want him to endanger the other people" I agree with the fact that I wouldn't want them in danger but "pardon' me if I am wrong but isn't that your job" I am thinking this the whole time they are talking to me. I was also wondering if it was the other way around and my H was trying to put me in the NH if it might be a little easier!?!?!
Deb, I hope you said what you thought!!! It IS their job to take care of people who can no longer take care of themselves! Sometimes that includes some mean spirited people. And if they were unable to care for themselves, they might get frustrated and mean on occasion, too. DUHHHHHH! I always say what is on my mind! If it is incredibly rude, I just start with "Excuse me, but......".
I just couldn't believe what they had said that I was just "stunned" but I did tell APS and the local alzheimer's assoc. person. I can't believe that the only alternative that I have is to wait until he does it again and then call 911 and they take him away and I go to the emergency room and they take pictures. Why does it have to be this difficult, it doesn't make sense. It is the old saying "Money talks and everything else walks!" That is a piece of crap but it is true.