I swear. Sometimes I feel like I'm on even ground and suddenly, I'm all up in the air again, swept up in doubt and fear. Regression from feeling like I KNOW I did what was right in allowing John to be placed in the NH. What happened??? Today, I went to vist and pick up his laundry (can't see giving them $30 a week to do his little bit of laundry). He met me with a smile from his bed, had just had a good meal. Then, this strange conversation began about how he's been taking part in all the 'wonderful' and assorted activities available for him there (that is true...there ARE a lot of things for him to do if he'd participate). He went on and on about how the staff took him around in this golf cart and showed him the property....talked about the wonderful paintings on the walls by important artists (?) and all the sculptures (?). Said he attended a discussion last night where the speaker talked about the facility and it's supporters, how it was funded by so many thoughtful people. Said that even if you had no money, you could stay there, they would never throw you out. Talked about all the wonderful food and all the attention he gets (that part might be true). He was very clear in his speach. I've not seen him so strong in a very long time. He needed minimal help in sitting up, getting to the BATHROOM . . . NOT the bedside potty. Didn't express that he seemed to understand that I've not been there for a couple of days (I last visited on Thursday). But, said he missed me and loved me. Said he was getting better and stronger every day and wouldn't need to be there much longer so, I'd be able to take him home soon. WTF??? (sorry) I went to talk to his nurse. No, there is no golfcart, no 'tour of the grounds' and no visitation by any lecturer last night. No important art. No, he doesn't want to participate in ANYthing they have to offer their residents. He does the minimum that his PT asks him to do IN HIS ROOM, bedside.
My WORLD is already upside down, I don't know where I'm headed personally (really), financially, otherwise. I've begun the 'spend down' process to qualify him for Medicaid and still have many unanswered questions regarding all that. All of this uncertainty is dibilitating to say the least.....now, he's talking like this and, indeed, (even according to the nurses) he's getting stronger and gaining a wee bit of weight. I KNOW, I UNDERSTAND that I won't be able to take care of John at home any more.....his health needs won't make it possible (but, you see, there's this bit of doubt....maybe I SHOULD bring him home). He'll always be in and out of the E.R. for one thing or another. I have no help or finances to afford any in home care and there's no family around to help.....that's been established. I'm at a loss as to what to say to him about his plans for "homecoming" lately. I absolutely broke down and cried in front of him and his roommate. I layed down by his side and for the first time in ages, he stroked my arms and head and tried to comfort me. He said he understood and didn't want to burden me if I thought I couldn't bring him home. He asked me to be very careful and not bring any men into my life....I don't need that. (Hey, THAT I realize, but I DO have male FRIENDS) I'm devastated right now. WHAT AM I DOING??? DOES HE BELONG THERE???? His doctors evidently think so.
Everything is overwhelming me at this moment. I am trying to get my emotions under control.....believe in that "emotional divorce" thing, but it's so hard sometimes and I take MANY backward steps for each forward one I FIGHT to achieve. IF I had a good, close, supportive and loving family, good friends nearby that had time to involve themselves and some FINANCES, I think I could cope with bringing John home. I feel hopeless. Yes, going to talk to the social worker at the NH tomorrow to bounce all this off of her (but, realize that she works for 'the Company'). But, until then, if any of you have any feed-back to offer, as in experience with this kind of double-thinking, let me know, okay? I'm really freaking out here.
Tried to talk to my parents about it ..... I worry them so when I'm like this and hate to express the reality of my nightmare. They are on a downhill slide themselves, being the same age as John, with their own health concerns and in an assisted living facility. They want me to break away and come to visit them so much......but I'm hesitating because I'm still not able to get my financials in order.....CPA and Lawyer visits and phone calls and letters and documents needing to be signed all the time.....too scared to break away. They keep telling me that my own financial future is at stake and they need to see me (what the hell does THAT mean??). They've already helped me more than any child of 54 years of age could expect her parents to. I'm embarrassed about the help they've given me...the "Doctor's Wife". More than I can possibly repay in my lifetime.
I know I need to get back into my studio (those of you who know me), get my website back up, and register for school, if that is what I want....need to look into getting a job of some sort (perhaps with a large animal vet, for instance) but, regardless of what I may show to the public, I have a HUGE self-esteem issue going on. I just feel like I'm caught up in this tornado and ...... I don't think we're in Kansas anymore, as Dorothy said to Toto.
My FACE feels like its falling off.....GOD will this ever end????!!
Jen - you mentioned a while back you were going to cut back on some of your meds? Did you do this? I hope not - right now you are too exhausted to do it.
My reply to John would be to just say 'yes dear'. It is evident he is hallucinating or as with a child, has his own pretend world to help him cope. My mom use to say 'take me home' but we couldn't and it was hard to tell her we couldn't. Most of the time we just changed the subject - talked about something funny or lighter.
You say: >>IF I had a good, close, supportive and loving family, good friends nearby that had time to involve themselves and some FINANCES, I think I could cope with bringing John home.>> having all that is no guarantee you could bring him home.
You need to stop the thoughts of what you can't or wish you could do when they start and concentrate on what you can do. What you can do is visit him and make sure they are giving him good care. Then, take care of yourself emotionally and physically so you can do that without it sucking the life out of you like it is right now.
Jen, get ahold of yourself. John is confabulating...he is not doing all those things, you know it...he just thinks he is....just go along with the program. You have to go where he is....he can't live in your world. He is not coming home....you admit he needs more help than you can give him. So, just humor him about coming home....tell him that when the doctor says he is all better you can talk about it.
Regarding your parents....go to see them....they need a family around just like you do. They miss you and are worried about you.....Where do they live? Is there any way they could move to an assisted living facility closer to you? You all need each other.
Quit procrastinating...get into the studio....create something wonderful......If you want to go to school, get on the waiting list.
Don't let yourself become a victim....you can still take care of John's needs in the facility but can start building a life for yourself. But, you have to want to do it so put on your big girl panties and get started.
Jen, please know that I am talking to you just like I would talk to a child of mine.....so please don't think I am being mean....sometimes we all need a kick in the keister....
Thank you all so much. No, I never think of any of your "gentle persuasion" as insulting or mean. I just need friends around me sometimes to say and do just as you have done. I'm so confused by this disease at times. It's confounding.
And, I DO need to learn to "cowboy up", pull on my "big girl panties", "man up" . Practicing. (I once used to say that practice makes perfect......then, I was told by someone that "no, PERFECT practice makes perfect.)
You know, all of this would be so much easier to take if John were unintelligible, drooling, unable to move and incontinent. But, he isn't. His old self (or a portion of it) comes through lately and THAT is my undoing.
Jen, as bad as my husband is when it's just "us" here, you should see the change he can muster up when someone comes in. The word, CONFABULATING is perfect. Had you considered that maybe he dreamed these events and the dream was so vivid, he thinks it happened. He's dreaming about the John he USED to be - when the Development Director would drive him around and tell him about the facility (hoping he'd make a large donation). My husband often thinks he's still President of the DuPont - Mexico-So American operations. Once he insisted I get him to Switzerland for an important meeting. I said the weather was so bad, the flights had been cancelled. (It WAS raining cats and dogs). No problem, he siad, let's just drive there!......... (Switzerland????) When they sound 'normal', remind yourself it's the Devil Disease talking. THEY are gone. Sweetheart, repeat this...HE is gone!!! You wouldn't be bringing John home, you'd be bringing his shell home. That's so hard for me to accept, too, but I think I'm there. Bless your heart, ... go see your Daddy and let him stroke your hair. You need a Parent Fix...you really do.
Thank you all so much. I'm crying so hard to know that I really do have some friends....HERE. Maybe tears ARE full of toxins....in that case, I'll wake up a healthier Jennifer. ((((love to you))))
Jen, this must be so hard for you. You've gotten good advice above and I concur. Just keep reminding yourself - it's NOT John, it's the disease talking. Here's a big hug for you ((((((()))))))))
My (probably lame) advice would be to quit going to see John. Just see him once or twice a month if that. I don't think you benefit from the visits and doubt he does either. Some good advice given above by others. Just take care of Jen for now.
Jen, this is not the time to cut back on your medication. Good advice to cut down on your visits to John and go spend some time with your parents. Is there someone who could take care of your animals while you're gone? No way could you bring John back home. Keep up with your plans to make a life for yourself.
I've cut down on all my medications.....and doing surprisingly well. Have an undercurrent of anxiety, but really want to deal with it by using my coping skills. My benefits (pshycological) have run out for the year on my policy.....can't afford to pay out of pocket. But, I've applied for indigent care in that area through the hospital (surprisingly, I pay over $600 a MONTH for health insurance.....this is unfair). Hope to hear something soon. I take something for sleep, still, and am trying to cut that back. Probably is nothing more than a placebo effect on me by now, anyhow, because I've used it for so long (Ambien).....years.
I got a phone call from the Hope Cancer Center nearby. John has an appointment there, requested by John's doctor at the nursing home. The nursing home also called me to ask me to go with him in the transport vehicle on Wednesday. I'll need to be there before 2pm. This has an ominous tone, to me. I wish this would all be over. For one or the other of us. Soon. I can't even seem to get on firm ground, with an understanding of where I am financially, much less all these health questions. I just want to go visit my parents. I want to leave home, leave no forwarding address, sometimes.