Awhile back, Nancy, Joan asked that we try to keep ourselves on topic within a discussion, and add the OT: designation when we go off on tangents (which I, too, am inclined to do. I TRY not to...
Sunshyne, I knew you would clarify that anosognosia thing. Well put. I wrote down your definition. Thanks. Yes, my husband has anosognosia. I scheduled him for a physical for an Aflac cancer policy 4/3/09. (Which I have to pay for!) I entertained the thought of the dr. giving him the quick evaluation for memory,etc. whatever it is called. Then I remembered that I can't document that. But it would be the perfect excuse, that Aflac wants it done. I am still tempted. What is the test called?
i dont know it may be the only time she can get him into the dr office. does she want the dementia go forward for early sssi or the cancer policy. the dementia is for sure the cancer is not for sure - think about it kitty. if you know the dr and hes your personal one maybe you can ask for an unofficial verdict on the side.? not sure if he is able to do that but wouldnt hurt to ask? if you are planning to divorce then thats another can of worms too. decisionmaking time. divvi
If your dh has been to a Dr. at all in recent years I imagine there is going to be something on history reports from Dr. office that suggests dementia and I would be very surprised if they would write a LTC Policy. We applied for LTC policy before dh was diagnosed and at the time he was told he didn't have AD. He was turned down for a policy. Perhaps another Company would have - but then I would have had to say he had been turned down by another company. I would be surprised if your dh would be approved for a cancer policy if he had cancer previously. My dh used to write Life Insurance but things have changed.
Be careful about mentioning dementia and alzheimer's to anyone in the insurance or Medicare field. Even my doctor told me that. After he broke his hip, for example, he needed physical therapy. IF Medicare knew he had AD, they would not have approved payment for PT. Insurance companies recognize the expense in dementia care. Don't pre-warn them.
i have never seen a policy app for insurance that didnt ask if there were any mental issues in the last 5yrs or more sometimes. and they always ask list the drs you have visited in the last 2yrs..stuff like that-if you lie you get it for insur fraud if you turn in a claim at some point. nowdays they SHARE info with everyone else, your bank credit cards its hard to get away with anything now.. i get to that question of mental issues and have to tear it up! divvi
oh yeah, once you been rejected for any insurance you are black balled for any other types.
Oh, the cancer is for sure. I've read the statistics about his non-small cell lung cancer. I don't think anyone escapes the return of cancer, either as non-small cell or small cell lung cancer. That is why I am investing in this policy. I think cancer will take him before dementia. This is not a long term care policy. It pays out each time you are treated for cancer, home care, hospice, etc.
He can be approved for the policy if he has been cancer free for 5 years, which he has. I just need the dates of the 1st & last treatments, and the physical, which requires no blood work or chest x-ray. My only concern is if they are savvy, they will know his cancer will return. But if approved, well then.
I think based on your comments, I will just skip the dementia test. There is nothing on his records at all suggesting dementia. Yes, it could be opening a can of worms I don't want to at this time. Maybe later I could tell him Aflac wants him in for a test or we don't get any money in the future. I think that might work, since he is willing to go to this physical. Sure he is.....IT IS FREE MONEY! I'm paying for the policy and the physical.
I know you are right about all of the insurance companies, ........but his Case Manager from the hospital who ordered the hospital bed, walker, potty chair and physical therapy as well as his doctor said that if anyone called from Medicare to verify the requests, to focus on the hip replacement surgery as the cause for the need, and not to "volunteer" additional information tht might include his Alzheimer's Disease. Medicare would not approve physical therapy and occupational therapy (??) if the patient could not remember how to do what he was shown. WE did not have occupational therapy - but we did have 12 weeks of PT.
briegull: My husband has Lewy Body Dementia, though he doesn't have the hallucinations yet. He is one for whom the Parkinson's medications work; he is pleased to see such improvement in his ability to walk smoothly. If the hallucinations or paranoia are bad there are drugs that help--most often serequol, but it is an individual thing. It is really important to have a knowledgeable doctor because other antipsychotics can cause terrible side effects.
Marise: I'm in a shaky marriage, though at least my husband has been fairly cooperative. At first when he was diagnosed I felt terribly trapped, but felt I had to stay because my husband is close to no other family (except a 97 year old aunt) and the emotional burden would fall on our teenage kids. Then I went through a stage of regret, particularly regret that I didn't push harder to change the things that were problems in the marriage. Now I think I'm coming to some willingness to just do the best I can. Emotional detachment is what helps me most, and he is coming to accept that after complaining a lot at first.
Good morning dear friends, I've read this thread all the wayyyy throughhh.. Learned a lotttt... woweee.. Marise, I did see your post yesterday but couldn't respond. We've been married nearly 50 years (in Aug). It has been difficult in many ways, yet here we are. Here I am..thinking what irony this is to be FINALLY FINALLY able to travel or have a 'life' ..because DH's life was his work..nearly to the exclusion of everything else.. his life was 'out there' even when his career changed ..his life was his work. I settled into a life that maintained the home, raised the kids, worked, and his schedule was his to keep. Doing family trips or taking vacations was not part of our world. So when our children remember trips or mini vacations, they might remember that he wasn't there. However, when outside on the ranch they were always welcome to work with him. It was an adjustment in expectations and acceptance..we just went on with things. Now here we are..and its a struggle sometimes to overcome the fact that things have turned out like THIS.. On good days, I think..'he would do the same for me if I had this disease'.. On bad days I think let me outta hereeee. This group of friends, Joan's place, and our children have been a tremendous help. I would encourage you to find that something that seems like oxygen to your soul..for me, it is my faith, and art/painting, the ocean, the movement of the waves.. even Jimmy Buffett! well ..whatever it takes folks!
Judy we did reach the 50 year mark though husband doesn't know it. He really wasn't there for us during the growing up time. He was there for any one else-especially if a plaque or recognition came into play. I used to say-while you are out there getting praise we are home alone. Don't really feel I own him much now. His FTD rages put me through hell and I am just going through the motions of being married.
Yes, we have stacks of plaques too, bluedaze!!! hee hee.. oh mercy the fellow is a good man but it has been similar here. I doubt any of those who regard him so highly have any idea that he wasn't the same at home. I can only offer that I can't (and my children don't want me to )attempt to keep him at home when it becomes too much.
Some days, the question of 'is this too much' is very close to a loud YES. In the same way, I wouldn't want him to have to keep me here if I began to have some of the really difficult behaviors.. Its maybe harder for couples who have been so extremely close and who now are in this strange place. I don't know. I'd like to believe that closer couples can reason things out together and that there is more cooperation and less hostility.
My wife and I have been very close for our 55 years of marriage (and 8 years of dating before that), but now there is no ability to reason things out together. She has no concept of what is going on. Fortunately, she will do just about anything I ask without any argument, unless I ask her to bring me something and she can't figure out what it is.
Judy, like Marsh and his wife, we've been very close all 53 years we've been married plus dating time before that but there is "no reasoning things out together." The reasoning button is broken and can't be fixed. Thankfully, he is very agreeable. He is pleased with anything I reason out by myself. Gosh, I miss what used to be!
Marise - my marriage too has mostly been one of convenience. The first couple years were good, then we started infertility treatment. If anyone has been through that you know it can be very destructive to marriages. Taking temps everyday; doctor appts; being told when and when not to have sex; surgeries, etc. Then we adopted two siblings, age 1 and 2 which I thought he wanted. He never bonded and immediately became the absent dad. He continued to bowl and play softball while I quit work, stayed home and gave up bowling and softball. Then I made his dream of his own business come true which he destroyed. It was 4 years into it he started an affair with a teenager which led to the failure of the business and the diagnosis of 'detached personality disorder'. I wonder now if it was a precursor to AD.
I stayed with him cause I figured no one else would want me and had to stay for the benefit of the kids and him. I learned 15 years later I did have a choice back then but felt it was now too late to leave. We set goals of when he was 55 to work and travel. We started that when he was 57 but it has quickly slowed down if not stopped due to his diagnosis of amnesic MCI. I unfortunately truly believe he is progressing toward AD.
How do I feel about the prospect of dealing with a long illness? Stuck, hateful, resentful, angry, frustrated, wishing I had the courage to walk away. Why don't I? He has never been able to manage money. I have no where to go - no income except our meager unemployment which will be ending soon. We have existed together for years as friends. Due to what i believe was early signs, sex has been not a part for years.
I too pray that I can get beyond the negative feelings and find compassion to care for him until he is ready for placement. He keeps telling me not to do what his mother did which was to literally kill herself taking care of his AD dad. I tell him don't worry - I won't.
Judy & Bluedaze, At least your husbands WORKED for a living. I think that is one of the things (according to Steve Harvey, "Act Like a Lady, Think Like a Man" says, women look for providers.) Mine just lived off his inheritance until he gambled it away on day trading. Would you trade places?
Right. I don't imagine anyone would want him at this point. But, like they say, there's a sucker born every minute. AND there are some desperate women out there. Let someone else listen to the same story 10 times a day. Etc. I have no more emotion left. I am numb as far as he is concerned. I do feel pity, but I also feel like I've been cheated & lied to. Correction, that is not a feeling, that is a fact.
I dance at work, literally. They play great music & we all dance around & it is fun. NOT dancing with him.....
Marise: I am so sorry for your situation and I can only relate to it in a little bit of a different way. My wife was diagnosed about 8 mos ago, but, she started having symptoms (I didn't know what they were then) several years ago. As the got worse, it was destroying our marriage. She wasn't the same person I married or that I wanted to continue to be married to. Her diagnosis was a big relief because I finally knew that it wasn't her fault, but, the sickness that was taking over her brain. Made things easier for me and now the medication (we use chemicals) she takes makes her a calmer (most of the time) person. Anyhow, I can understand, empathize and live with her illness.
2nd Time- Is there anyway you can place her in a facility where she can live. I've noticed that there are always many more women who live in care facilities, and it's easy to understand why. Men just can't do everything that needs to be done...such as combing hair, dressing, cooking, cleaning, - I feel really bad for you...(and for the rest of us too... Right this minute, I feel reeeeely bad for..ME)
Kitty...I'm here! Thanks for asking...that was so sweet!
When I posted this question I was so pleased with the 12 responsed I got at first and then have had an incredibly busy week but thought I'd pop on really quick to see what's going on and was SHOCKED and PLEASED to see 80 postings to this discussion! I figured it would be way buried in the list.
I just read through all the posts and again am so thankful and pleased for everyone's responses. This week has been a real personal growth week for me and my allowing myself to become angry has been cleansing. So all is good for now but I won't hold my breath that when it comes time to get the MRI the stress will return. For now DH is "blissfully happy" as the nurse described him so we're hanging in there. Our new insurance policy (we're on Cobra now and I don't want to pay two deductibles) starts May 18th so we'll get the MRI and see a neuro then.
Thanks again to all of you. This has been really helpful.
Lori2, you're not out of line at all. I am staying primarily because I have a "secure" roof over my head. I just started a new job beginning Feb. and I have to see if it works out & if I can make enough to support myself. Jobs are very tenuous these days.
Also, I am pulled to watch over him until he is too bad off to function. He has no other relatives except his brother who lives a 2 hour drive from here. He is not the type to reach out. He didn't even tell his brother when he had cancer in 2001.
Been out of town and just skimming some of the topics I missed. Don't have time to read every post but so I apologize if this has already been mentioned.
Marise - A big red flag went up in my head when I read your post. You live with a man that most likely has dementia and is interested in porn. And you have a 6 year old daughter. At all costs, (complete supervision/separate living arrangements/divorce) you have to protect her first and secondly, you have to protect yourself. I am not being cruel but your husband is number three on the list.
You will not believe the things that the spouses with dementia on this website have done that they "would never do". The very early in the disease times when the person is otherwise so functional are very difficult and sometimes very difficult choices need to be made. Keep your daughter number 1 and you number 2 and believe in yourself if you have to make some of these choices.
I so agree with Catherine. Porn interest would scare me to death. I have never had to deal with it but combined with memory issues could have disasterous results. There could be worse things you could do for your daughter, even though he is her father.
So many children are abused and more than we are aware of. Family members are usually the guilty ones. Perhaps you should consider getting yourself and her out of there. There is no way you can watch her 24/7. I hope this issue won't apply to you but be on the alert that it can. Good Luck
Marise....I, too, can say there was lots of trouble in paradise even before John's symptoms became apparent. I can't believe how far down he's gone in the last year. At times, he's as loving and gentle ....well, more than he's ever been in his life. Then, in another five minutes, he's accussing me of horrible things, cursing me. I swear, it crumples me and at times, I can't get out of bed for days. He'll call every five minutes (he lives in a nursing home in Florida at the moment, waiting for doctor's release so he can "come home" here to Virginia). Y:esturday, he called every five minutes. First in one character, then another. I've asked that his phone be removed or unplugged from his room, but the nurses said that that would infringe on his 'patient's rights'. How about my own? I finally had to unplug all my telephones to have some peace. My face doesn't look like my own today....all puffy and blanched from so many tears from yesturday. So, I wouldn't go to church this morning. This morning I replugged the phones. Same thing began again. He doesn't seem to remember that he belongs in Virginia and is angry that I'm here....in our home....in Virginia, where I belong. He called and asked me where he was suppossed to go when he's released today (he won't be released for some time). I told him, "John, you're going to come back here to our home here in Virginia!". He considered that for a moment and then said he'd rather stay in Florida. I'm so tired of all this flip-flop. I understand that he is on no medications at the moment to control this kind of behavior. That WILL be a prerequisite for his coming home....Also, I can seem to get NOWHERE with the doctors and staff as to an idea when he can be moved. I don't know how to handle his tearful, lonely, fearful moments when they are visited on me. I'm so resentful of all the ways he's failed me, his accusations, his irresponsibility in the past, and now this illness which I know isn't his fault. You, my friends here, are truly the only friends I have. I have acquaintances here, no friends. I find it difficult to extend myself to others because of my problelms....not just the Alzheimers thing, but my own depression. I think it scares people who aren't dealing with it. I am at my wit's end here. One minute in talking with him, I'm his dear sweetheart he can't live without, the next I'm a G-------d Whore from Hell.
Stuntgirl....I think you need to go back and read all your old posts and then I think you might see that you need to leave him in Florida. Bringing him home is not going to make him happier and it sure will make your life unbearable. At 81 I realize that life is short and it gets shorter everyday. Make a new life for yourself and eat dessert first.
I agree with Bama. I don't see how having him in the same town you are in will change anything, and you will still be unhappy. Why is bringing him back to Virginia and putting him in a nursing home there there such an important issue with you?
I seem to recall you saying he was raised in Florida, and as our LO's disease progresses, their "now" moves backward in time. Of course, he thinks he belongs in Florida. That is where he has always lived in his mind. He may have no recollection of ever living in Virginia.
You need to acknowledge the fact that a nursing home will bill $5000+ every month. Can you handle that. You mentioned on an earlier post that you were getting food from a food bank. I must be missing something here.
I'm reminded of the story of King Solomon and the two mothers who both claimed the baby. The one who loved the baby the most agreed to release her claim in order that the baby could live................
Stuntgirl - I agree. Do a search of all your post. Then read them as a 3rd party, not yourself. Otherwise as an outsider looking in. I think you will see more of the whole picture. Also, you will see that you have answered the question as to which is the best decision for you early in your post.
My question: I know you love your former husband (vs what he is now) but what is the real reason you want to bring him back? Is it to prove something to yourself? Prove something to the kids that took him away? Do you want to look 'good' in the worlds face showing you took care of him in his time of need?
You need to really exam the situation and answer the question as to why you want to bring him back to Virginia.
Then, think on this: it would be far cheaper to fly down and visit monthly than pay for a nursing home. As for his calling - hopefully they will get him on medicine to calm him down. If not, see if you can get a court order to have long distance removed from his phone. Or, change your number and only give to those you can trust. Or get a cell phone where you can screen calls you get. When you see his number just turn off the ring and it will go to voice mail - but don't set up voice mail so he can't leave a message.
Stuntgirl. if you are getting upset over phone calls i think thats a good sign you need to think about how its going to be oneoneone with him in your face at home all day 24/7. he is not going to change from this erradic behaviour you are seeing and it may escalate with the move back home. we all know how AD persons get upset over changes in environment. he may not know your home or you at all once you bring him home. if you are serious bringing him at all cost, then i hope you get the drs to prescribe the 'calming' medicines you want now while hes still in the facility in florida and get them into his system so they can observe and adjust as necessary. some meds act just the opposite in some individuals and can make them worse. its going to be a hard row to hoe once hes in your care all day everyday and your nerves will be tested to the fullest. divvi
Stuntgirl, I just wish it were possible for you to rent an apartment near his nursing home for a few weeks, and visit him daily there. You would have a better idea what you will be facing should you decide to fight to bring him home. It will be a hard decision, no matter what you decide.
ttt for danielp and others, term ANOSOGNOSIA...medical term for dementia patients who have no abilities to acknowledge or recognise they have the disease-divvi
if you do a search with this word you will find lots of info provided by sunshyne -