Okay. I went to visit John at the nursing home today along with my neighbor. Not much of a visit. He looked worse than I've ever seen. I'm glad that our two girls in Richmond visited him earlier this month and the one in L.A. came to see him, too. John was rather unresponsive and didnt want anyone to touch him. Visit ended soon. Before I got home, I was called by one of t he nurses. To put it in short terms, John is dying. I don't want to say anything to the kids. John and I want to be cremated, with a memorial service planned at the convenience of family members (they're all over the country and have carreers and families). I can't afford funeral expenses. I know the family (his) will hate me for not having him get the transfusions every two or three weeks that keep him alive....they'll hate me for not having a big funeral. He's left nothing for me if something were to happen to him. No provisions at all. Right now, John is on "comfort care" only. What would hospice do that the NH isn't doing? I feel like a monster. I have no feelings but numbness. Not grief (yet). I'm frightened. My heart has been wrung out over the years and I've been mentally 'divorcing' him from myself for some time, just so I can face each day since his diagnosis. I'd really like to hear how some of you have handled this situation. Both our advance directives specify that we want no treatment other than comfort care if we are diagnosed with an incurable disease....it's not the ALZ, but the blood disorder he is troubled by. I hate my life. Hold on... I just got another call from the NH that tells me that his advance directive nor any other document on file says that I have no rights to terminate in his interest any treatments. They went into his room after talking to me on the phone and ASKED him if he wanted another transfusion. (this is a man that CANNOT make decisions for himself or anyone else)......He said he didn't want to think about it right now. So, the nurse said she was going to ask him again Monday WHEN THE MEDICAL TRANSPORT TEAM WAS ON CALL AGAIN. So, once again, in the very end, because of John's irresponsibility, here I am, left holding the bag. Can't believe all the emotions coursing through my mind right now. Just want to go out and get snockered. Or go out and bring something home and get snockered.
I'm praying for you. I have no wisdom to share but I do believe you have every right to be angry with him along with whatever other feelings you can face now.
Regarding Hospice. They will take the responsibility off your back. They will decide what treatment is best for him and they pick up the cost of all the meds they decide to keep him on. You can tell the girls that HOSPICE decided this...or that....
IF YOU WANT an excuse not to have to decide what to do, they may be of help to you. Some people think that Hospice care is full time care. IT IS NOT, they just supervise his care and treatment and if you say it's okay, they will take all of the questions about what is right and what is wrong out of your hands. and...again, it's good to be able to say, "Hospice came in and their doctor and nurses are making all medical/pharmaceudical questions". It's certainly worth a phone call and discussion. All Hospice groups are different..
My husband was cremated (and I wil be as well) and if your John dies tonight, you don't have to have the funeral in three days. You can have a Private Memorial Service on your farm, by the ocean or wherever you want to have it. A second MEGA Memorial Service can be held in Florida, California and Virginia ...or NOT. Let his first children do what they want to do...and you do what you want to do. We did not have Foster's ashes at his Memorial Service. Let that be the least of your problems right now.
One thing is for sure. If you want to solve this problem, you need to stay focused and stay sober. Trust me, I know how hard it is, but you can do it.
If you were under the impression that you had the legal right to make advance directive decisions, I think you need to ask the lawyer who drew up the paperwork why you are not the decision maker. If you are not, who is?
;thankyou, Joang..........if this dosen't make sense, it's because I did and went out and bought a VERY nice bottle of Robert Mondovie, Reserve, to console me....hope someeone can help me make ssence of all of this. Love, Jen. Maybe TJ will join me in the next year learning "speed and power" show jumping (kind of like Nascar on a horse) , cross country endurance and fox-hunting next year!!!!!
Hey, stunt girl, I've got a good one...how about ski jumping? What a rush to fly off that jump and hang in the air for a while! And how about bear hunting with a bow and arrow? Maybe going over Niagra Falls in a barrel?
Whatever happens, I'm just screwed again. No hope in sight. And, all when I was really starting to feel better about myself and my situation. This time next year, I'll have nowhere to live, I bet.
Hang in there, stunt girl, you've been through too much to give up now! You are stronger than you think. I know, I know...it doesn't feel like that now, but that strength will return. Lots of hugs and prayers for you.
Going through my files here, I have a copy of what is called a "Healthcare Surrogate Designation" and Durable Medical Power of Attorney (naming me) that I'm SURE the Nursing home MUST have.
Call them back to tell them what you've found. Jen, you are not a monster. On the contrary you're doing what you know John would want in his right mind. Go for it.
Stunt girl, you are not the bad guy just the guy hanging around trying to do the best you can. I admire you for that. You could have easily thrown in the towel but chose not to. We make a lot of decisions thru-out this disease but the operative word here is "we". We are the ones holding the vigils for our lo's, wiping the nose, cleaning up after, watching them lose the battle and making the most of what we have. Do the best you can and to ____ with what anyone else thinks.
I do understand your position after your loved one is gone. I will not have anyplace to live either. Even tho this is on our mind daily, we must go on. You will make it and things will get better. Maybe not before they get worse, but in time they will get better. Until then, quit worrying what the family thinks, you need your energy for you and your loved on. God Bless you with peace and strength for tomorrow. Love in Christ,
Thank y0u for y0ur words, mammie. Thank you for everyone's comforting words. You know, I was invited to a neighbor's home for supper last night. (these are the people who feed me, keep my SUV filled with gas, give me diesel for equipment in the season, pull hay down for me, take me across the mountain to UVA hospital for appointments, take me to see John...and, lets see, last morning, they brought me breakfast from Hardees in town, if I'd only make some of my good coffee for them ( I don't know why....my dad says that stuff I call coffee "will kill or cure a fella"!). I know I have many blessings I've only lately become aware of. I have a farm and everything on it is paid for. I have no outstanding credit debt now and don't want any (hence the plan for immediate cremation and a memorial later for John). My mother and father support me , but I know they can't do so for much longer. I just get so afraid. I've never had to live alone since I was a kid. Never. I'm just learning how to handle my money and its been daunting. I'm facing a law suite in March and I'm told from every direction that it most likely won't go in my favor (the Nursing Home has taken his Social Security check and disability that I depended on). Heck, he'll probably be gone by then anyway. I don't know how I'll make ends meet. Therefore, I'm afraid of being out of a place of my own to call home, the way I've always lived. Don't want to face life in a little apartment, part with all my animals, etc. I'm so frightened. In the past, when I would ask John what would happen if I lost him, he would tell me I should just get another man to take care of me! Imagine!!!!!Hey, if there were a magic formula for that, I'd want a simple country boy at heart, that works hard, knows something about something, has a good family background (a good role model he grew up with), A MAN THAT PLANS FOR THE FUTURE.....and if I DID meet someone, where's that 'on' switch in his heart to make him love me? And where's that 'on' switch in my own empty heart to make ME feel something lasting???? Well, just keep me in your prayers, please. Jen
Jen, one piece of wisdom I've picked up through the years is that most things we worry about never happen. Since I'm a worrier, I have to make myself remember that. It's calming.
Yep, I've always been the worrier in the family, too. And, most of what I worried about never happened...with the exception of some of my kids' misadventures. Lately, though, things I never thought about ARE HAPPENING TO ME!! I keep looking over my shoulder and watching my every step so much that I can never seem to look up!
You're right......I got a little tilted. Hadn't had anything in quite a while. Won't do that anymore. It didn't make me feel anybetter, either. Warning noted!
Jen, you are going to be okay. I have seen you growing up as a person as I have read your post. You are stronger now than you were in the beginning. You are still young and you have a lot of life ahead of you. Let the future take care of itself for right now. Just put one foot ahead of the other and keep walking. When the time comes be open to new experiences and people but NEVER rush into things. Take your time and think things out and try to make wise decisions. End of lecture from and old lady....Love you
stuntgirl, are you over 60? Because if you are, as your husband's widow, you will be entitled to widow's benefits from social security once your husband dies. If you are 62 or older, you can get social security as a spouse based on his account now. And if you have benefits from them yourself, and you are under 62, you probably need to go and find out about disability benefits, since I very much doubt if you can work.
Starling...I am 55 now. So, I will get NOTHING. There IS no savings, no insurance policy, NOTHING. I am trying to find out if I can qualify for disability. I have no training, no education except being a wife and mother. I cannot sculpt any longer. My typing is rather 'hunt and peck'. Sadly, I am not able to train horses now. My doctor says my injury will take a year or more to heal correctly as possible. I hurt like H_LL. ALL THE TIME, have only half of my elbow that was salvaged, and my three bones in my arm are still not joined. So, I may be facing bone grafts in a few months. MORE time down. I wear a brace and wonder if I always will. They say it takes three to five months to qualify for disability and most people who apply are turned down. Not a pleasant future, I'm afraid. Thanks, John, is what I want to say to him.
Jenn, I know its not easy, I am 54 and have two little grandsons to raise. I will lose Jims income and still have my Mother to care for. We can only do one day at a time and only time will tell what our futures will hold. Worrying doesn't empty today of our troubles it empties tomorrow of its strength.
Jenn, I'm with you.........confused. Why don't we start our own community and we can all live together--or maybe Phranqe could let us live on the ship? I'd insist on bringing my anumals, too, so maybe we need an ark?
So, is SS the same as SSD when it comes to the spouse. I always thought that I would be eligible for my husband's SSD. Guess I'll be facing another shocker.---Does anyone know if the rules are the same?
Persons who can qualify for benefits on the basis of disability are:
A disabled worker under 65 who is covered by Social Security A person disabled since childhood (before age 22) who is a dependent of a deceased parent covered by Social Security or a parent entitled to SSD or retirement benefits. A disabled widow or widower age 50-60 if the deceased spouse was receiving benefits under Social Security
Stuntgirl'have you looked into disability because of your injury.I fyou are disabled a year you can apply.My neighbor,48,got it for mental anguish or something like that because she worked in an assisted living facility.My son-in-law ,57. got it because he banged his head and claimed he had constant headaches.Was a big put on job.Seems it's a lot easier to get it these days.
Ann, Jim is 62, 63 in May. He is receiving Social Security Disability. I am 54 receiving Social Security Disability due to 4 blown discs in my back. We have 2 dependent children. Will I receive anything after he passes? I have been trying to figure this out, it is quite confusing. Thanks for any info you can provide!
Susan L...........as I understand it (and I have a LOT more reading to do), and according from information I've downloaded from the S.S. site, if you are over 50 and widowed and disabled, you can recieve your passed on spouses Social Security benefits. But, I don't know if it is the entire amount or a portion of it. I guess if you still have dependent children at home it matters more. That's all I know so far.
Jen, don't beat yourself up for struggling with the finances that you never had to deal with before. I have been handling ours for the last 5 years and am just beginning to feel like I have a bit of a handle on it. I finally feel like I am able to make reasonable financial decisions with good results. Just keep weaving through a step at a time and you will get there. ((hugs))
One foot in front of the other, every day. Still looking at the ground again. "No Blue Sky" , by The Thorns, seems to be my latest life's theme song. (look it up on i-Tunes or some other site if you have it. I think it might describe alot of our lives.)
Jenn, I'm 69. Right now I'm getting half of my dh's Social Security benefit. When he passes, I will get his full Social Security benefit, and the half that I'm now getting will stop. We have been married over 10 years, which is the rule. Just passing on this info to you.
We all should be listening to Bing Crosby singing "Blue Skies", but in my case it's my life, rather than sky, that is blue. One step at a time, one day at a time...how many days until we can see blue instead of be blue?
Thanks for the info Jen. Now though, it's time for YOU to take inventory of your life. You OWN a FARM. You OWN animals, you have friends helping you our, you have PARENTS helping you. Moving on to a new chapter in your life could be an exciting opportunity for some positive changes. Let's face it, you and John were not happy. You can no longer do the chores you used to or the art you used to, so as my friend says, "Put your Big Girl Panties on and get on with it!" I would think you'd be set for a while with what you could make selling your farm and animals. It sounds beautiful. Think of a place that you've always wanted to live, take you money and start out on a new adventure! Take a deep breath and GO FOR IT!
Very nice, perhaps we should move this line of thought to a new discussion and people can add more words and when we have a pop hit we can donate the money to Alzheimers research. Perhaps we could get Michael Buble to sing it.
Jen, my mom made an interesting point about moving out of her big 2 story house that was way more than she could handle. She told me that she didn't want to just move out of the house, she wanted to move to something. That was how we got her out of that big house that was no longer safe. We moved her to her grandchildren. My mother needed a purpose to move and make a change. It sounds like you need one too. Forget the money woes/hassels for a moment, go to that quiet place inside you and think about what do you want to do. What calls to you and feels right inside you? Give that feeling some time to germinate and grow. With the variety of experiences you have, there are a lot of options available. You are so much more than just a wife, mother and caretaker. ((hugs))
I have always wanted to be planted, to have "roots" and friends, which John never allowed. I just want to stay here on my farm. I don't want to give up my horsiness.....my pony-club kids in the summertime....the smell of a stable, the feel of oiled leather, the sound of gentle whinnies and satisfying crunching of grain in a barn filled with the early morning sunbreak. Camping out in the tackroom all night when a foal is emminent. Do you understand? I am willing to give up my horses, provide full board for two horses, pasture rent for two on my bottom acres (with only a walk-in shed and the owners take care of their own animals). I am willing to sell some of my acreage that's only fit for cattle to my neighbors....we share it together for Angus. But, I have to wait until all this legal business is over. I'd love to have two miniature horses and a cart for two. Keep a stall for them. I'd have minimal costs for thier keep. My three hounds are part of my famiy and couldn't bare parting with them. it's not a matter of just changing houses. It's my LIFE. ALL of my life. My BODY and SOUL is part of this earth, finally. It is named 'StoneCrop Park because of it's beauty and all the work I've put into itl If you didn't grow up with this kind of life, you can't understand.
Well then stop worrying and make a plan! Sounds to me like you've already got it made. Just don't let all your plans hinge on finding another man. It's time to live on your own like a big girl.
Stuntgirl,Oh.I know too well how you feel about your farm.We have only 4 acres but I never want to leave it.I want to sit on the back porch and watch the birds.I want to watch the beautiful sunrises and sunsets.I want to continue to adopt problem dogs and gain the trust of the feral cats,but most of all I want my ashes to be spread on my pet cemetery.So I hope and pray you can find a way to stay on your beloved farm.
I know what you mean about listening to the crunch of horses eating grain. In the morning, hearing them kick the feed barrel, waiting to be fed. And again at night, for that feeding. The smell of them is wonderful. The nickering. The smell of the barn area. Listening to the rain hit the barn roof. And yes, hanging out waiting for a foal to be born. It's all wonderful. I used to board horses, and have taken our own mares to outside stallions for breeding, which resulted in wonderful little guys/girls. So, yes, Jenn, I know where you're coming from Your heart is in that place. Someone in this thread said that. So go ahead and stay there. You can figure it out. It sounds like you already have some good ideas. And, as someone said, don't go looking for another man to complete you. You are enough, just as you are, and you don't need a man that you have to answer to, and perhaps maybe one day take care of. Just some thoughts, Sweetie.
Update...went to the nursing home again yesterday with my neighbor to visit John, but primarily to give them a copy of the Durable Medical Power of Attorney and Health Care Surrogate Designation (with my name in it as such). First of all the director and their law office in Illinois is arguing the validity of the document. It was drawn up in Florida, as was my Power of Attorney in order for me to rescue him back to Virginia in an attempt to care for him at home. (I am not sure if my lawyer has updated that stuff to Virginia....pretty sure that's been done). Secondly (and this document is four pages long!), they point to a paragraph that states that he can revoke my status any time he wants. They reminded me that I hadn't ever taken the steps to have him declared incompetent (even though everyone knows he ISN'T competent). I had never wanted to drag him through that procedure (before a judge, expert witnesses, his doctors), not to mention the incredible expence I would have encountered in doing that). We talked about how he says one thing one moment and will forget the content of the conversation within minutes. I again told them the financial status and story of the Canton family. They were surprised that there was no pot of gold for us in the end. Then, in talking about $$$, that when Medicaid kicks in, they will continue to keep John's social security check and disability check to go toward his care, as long as he lives. This is NOT what has been told to me by TWO elder law attorney's I have hired. Today, I will have some face time with the current one. My understanding was that I would keep my property, get half of our assets (small, but its something), and his Social Security and disability leaving him $40 a month. This nursing home (a.k.a. Big Business with BIGGER law firms than I have or can ever afford) is trying to take me for everything I have. They were surprised (and a little obviously disappointed) to hear that I owned my farm, free and clear and John's name is not anywhere on the deed or in my will). Neither are ANY of my family anymore. Its all going to the ALZ foundation and The Heifer Project as it is written right now. Again, they suggested I sell my home so I could afford the remainder of his care (as if they hadn't heard what I was saying). Leaving me with WHAT?
After all the talk about whether or not John understood what kind of treatment he needed (the transfusions again), They insisted they would continue to ask him if he wanted that. It only keeps him alive in the same state he is in. Improves his color and relieves some pain, but he's right back in the same shape after two or three weeks. I insisted we go right to his room and talk to him at that moment. The nurses explained to him about his blood count. They asked him if he wanted treatment and at that time he said, "well, if you think I need it, I guess I should get it". They asked him to clarify his statement with a YES I AGREE or NO, I DON'T WANT IT. The nurses looked at me and asked if I understood that he knew what he was talking about. I said NO. That they caught him in a lucid moment. They asked him if he wanted to remove me as his health care surrogate. Explained to hinm that I didn't want him to have further treatments. I told him it was because he has a terminal condition that this is only prolonging the inevitable and I didn't believe this was what we had talked about for either of our end-days. He said that if he were unconcious and couldn't talk I could make decisions for him. Then he proceeded to harrass me with accusations of my having lovers behind every door and that I didn't WANT him home anymore. That I had sent him there to rot, so I could go have fun and live like I wanted. I explained (again) that I was NOT ABLE to care for him at home. More cruel mouth, mouth, mouth. I looked at the nurses and told them to call me when he was unconcious because I wouldn't be back. I've heard as much as I can take. I said goodbye to him and also told him I wouldn't be back again anymore after this last tongue lashing in public. This has been his behaviour toward me all my married life and now, nothing has changed in that area. Now I know he is SICK, SICK, SICK and not just from ALz. He's always been abusive. No more. I don't care anymore. When he dies, my "closure" will be an hour or so beside his box before cremation, telling him all of my resentments and everything I'm asking God to help me forgive him for. That's it. What else can I do. I'm getting nowhere. A fight at every turn of the corner, every other day. BAM!
Stunt girl, DH and I had DPOA and Health Advocate forms. All I needed to enforce the DPOA was a note from the doctor stating that he was not capable of making decisions. There was no judge or court proceedings needed. I think they are just trying to intimidate you into agreeing with them. I know all states are different, maybe I am just lucky to be living in Mich. Guess I'm also lucky that I never had to go through what you're going through.
Stuntgirl, I can't imagine what you are still going through. Your attorneys don't seem to be doing their job - just my opinion. I do know that medicaid will take John's SS and disability to pay for his care in the NH. Beyond that, I don't know about your state.
My thoughts and prayers are with you everyday. HUGS>>>>
Jen, it sounds like you have an action plan for the near future for you. You have made choices that are right for you.
I am so sorry that John is still so verbably abusive to you. In his case, just do what you have to do to live with yourself in the future - as long as he gets the care he needs you have done your job with him.
I don't understand all the ins and outs between Medicaid, SS, SS Disability and the laws but the differences between what the nursing home and the lawyers are telling you is staggering. Maybe its time to tell the nursing home to work it out with the lawyers or go through the lawyer? In many ways it sounds like John is his own worst enemy with his care. It also sounds like the staff is not that well trained in dealing with Dementia and AD patients. Something is very off with this picture.
Good luck on this, not even sure what advice to give you.