Read this the other day and it certainly fit what I sometimes feel and what marygail expressed so well. I particularly think it applies to a marriage where dementia is the "third party".
"People think love is a feeling, but it's not; love is an action. In marriage, you have to love actively because the feeling of love comes and goes, but the sacred promise is to BE loving, not FEEL loving."
That's exactly why I brought John home from Florida. I made a promise about "us" and intend to keep it, regardless of what I do or do not feel about him.
Jen, you told us that you were going to FL to pick John up, because the children had started divorce proceedings against you in his name, taken away your POA, and that you were worried that because of this you would lose the farm. You had your divorce attorney working on that problem, but you were frustrated. You hesitated to place him recently even after you reported to a doctor that he had physically abused you, and he had to be put in the psych ward, only because you wanted him "well enough" to redo his will. (I guess to go back to including you in it.) He physically abused you before he went to FL. You knew he was accusing you by phone of seeing men when he was in the nh in FL, so it is difficult to understand why you expected it to be different when you brought him home. He was, when in FL, according to you, calling you constantly and was very hostile. Everyone tried to forewarn you of what you would probably be in for if you brought him home. I myself was wondering how such a frail man would make it from FL to VA alive. If you go back and read your posts from that time, I don't recall it having anything about making a promise to "us." Since his return, you have become very frustrated, because you seem to think he is capable of doing more than he does, and you wanted to "push him hard" to exercise. You have made statements such as, "was I being irresponsible? well I just didn't care." This is not meant to sit in judgement of you, but to express concern for John. You insist that he is being well cared for, but so many statements you make would indicate the contrary. You say all these things, and then you say you are a good care giver. Things like, "he's been on the couch so long, he IS capable of getting up and having coffee on the porch, so if he falls, he falls." It is concerning to read these statements. Everyone vents from time to time, and that's o.k. But this seems more lacking in caring about him overall. To me, you seem to lack an awareness of his condition and capabilities. On the day you had him admitted to the psych ward, you told us about that, and in THE SAME POST you talked about how you longed for romance and a future. (with someone else implied.) If you started your own thread, you would be able to review your statements and not have to hunt for all of them. I don't think I am alone in my concern for John.
Kitty, I feel soooooo misunderstood. You are painting a picture of my posts that make me sound so unbelievably selfish and mean. I have been through so much with John's family. I've been kept from him for a long time. Now, I made the decision to have him home. I have no friends to speak of, really. We have no wealth....only my property. I couldn't sell it if I had to for half of what it's worth in this economy. All $$$ is gone and I don't know what I'm going to do. No, it isn't that I wanted to have him home solely to "fix" the will. I was so lonely. I find I am STILL just as lonely (more), but with ever more responsibillity. Really, there were many times while talking to him on the phone while he was away, he sounded so normal and made feelings in my heart return....I believed having him home again would "fix" everything. It has not. Also, I've lived with his abuse for many years and so, his physical and verbal violence wasn't a surprise. This is a terrible disease. My posts change in temperament as often as the ugliness of this disease does. Roller Coaster. Yes, I DO hope for a quick end to this kind of life....who here wants this to last forever? I DO hope for another chance one day, and for romance and companionship with another. Who wants to be alone for the rest of thier life? Not I. I'm hugely vulnerable, lonely, frustrated, overwhelmed, tired, frightened, depressed, anxious......seldom happy. Like everyone else here. I AM on an antidepressant and take an anti anxiety med as well, as needed (and am well followed by my physician). I DO take care of John. My daughter was over last night with her boyfriend (she finally called me, but now, I find, she needs money....that I can't give her) and she remarked about how much better her dad looks from the last time she saw him (in the nursing home). I would have e-mailed this to you but there is no address posted for you. I'm not angry. Just embarrassed and have had my feelings hurt. I misunderstood that this was someplace I could come to not only vent, but compare experiences with others, hoping to understand more clearly what is going on with AD and perhaps be able to feel like it's not ME that is going out of my mind. I'm sorry. I'll find my care elsewhere. Apparently, this is not a forum where one can be so open and honest about thoughts and feelings. I feel as though others now see me as downright criminal in my intent. Bye.
Sometimes being a caregiver in this disease can overwhelm the best of us, and sometimes we will vent things that we really do not understand and often it may be misinterpreted due to lack of body language, facial expressions and gestures. I often may say something that either makes no sense at all, or is so incorrect in its vocalization that I ask myself "did I just say that??" I have learnt to speak alzheimer's, and sometimes I forget myself and speak that way to others....I no longer insist on proving myself right, and I often will agree with whatever is said just to keep the peace and avoid catastropic reactions. All of us do the best we can, and be it right or wrong, that is the reason we are all here....to have others to bounce our feelings and thoughts off us, and to gain some other insight in battling this disease...I often find comfort in seeing how others are dealing with specific problems, and no longer feel that I am the only one dealing with a specific item...Of course, each ad patient can be totally different at times, depending where the neurons are misfiring. I believe each and every one of us fall short of the "perfect " caregiver, and that is O.K. Yes it is OK to fail, yes it is ok to lose your temper, cry, scream, vent, and break concrete walls. One of the most important things to remember is that this is a progressive disease, and it never ever takes a break....when you think everything is going smoothly, look out for the sneak attack. I find that the crisis is easier to handle, and that it is the little quirks and irks that sneak up on you...finally one will knock you over. Stop worrying about the finances......you cannot take any of it with you....but you can take lots and lots of debt with you when you go (thank God)... Yes also there are times when I do wish for a quick end to this, but it is not for my benefit....it is for the benefit of my dw who has lost her mental capacities./.. There is not one of us that is content with being an ad caregiver.....Please correct me if I am wrong....most of us would rather have passed, and let someone else go thru it....and our feelings of frustration, anxiety, depressed, unhappy, and overwhelmed gets transferred to the patient....and since they cannot understand it, they respond with identical responses....They are gone to comfort you, to praise you, and to love you the way you expect....It becomes a more one sided love affair....You love them......and if you can get anything back, even a smile, then it is worth it. Stuntgirl- I for one do not see you as downright criminal....we are often very quick to judge, and I think most of us are not nearly the great caregivers that we lead people to believe.....We may say everything is great, but with ad, it is impossible.....and human nature takes over...I watch my own daughter with her terrific kids.......but you should see her when they have been whining and crying for 15 hours.......Oh yeah...quite a difference in the "perfect Mom"/// So, just continue doing the best you can....we are here to support you..and when you get overwhelmed, spend some time on the cruise ship....we have lots of fun there.....
Jen, If you are interested in reading all of your past posts as a couple of people have suggested, you can search for Stuntgirl: with the comments circle filled in. They'll all come up in reverse order, so to read them in the order you posted, you would have to go to the end and read backwards. It might be interesting.
I posted in Stuntgirls' defense once before, but have been reading her posts, like Janet has suggested in the above post, and quite honestly, I'm concerned. Jen, I'm concerned for your emotional well being. I'm not judging, I'm merely making an observation. After reading alot (not all) of your posts, you really are all over the place, and more times than not, you're contradictory. You are very open about your past struggles with drugs, and with the meds you say you are now taking. My suggestion for you would be to call your PCP and get in for a complete physical, and possibly an adjustment to your meds. I feel you are in very dangerous territory. My second, but probably greatest concern is for your husband. After reading your posts, I have to say that I'm not totally convinced that he is safe. Not to suggest that you would intentionally hurt him, it may be out of your control. Again, I have never met you, but just say that from what I read, I'm concerned. I'm not judging you Jen, I just think that you may need some additional help. If I didn't care, I wouldn't post. Please don't take offense!
C'mon guys. Lay off the poor girl. It's not our job to "fix" anyone, set them straight, or make them see the wrongs of their ways. What is going on here. I think we all go through Stages just like our LO's do. We have to just recognize that absence does often make the heart grow fonder, and as she said, he was often very loving and sweet when they spoke over the phone. Have we all not read the posts from people who have placed their Spouses in a facility, and how the bad memories grow dim and good memories take over. Jen was without him for 1.5 years, and frankly, he has only been home a few months. Imagine not being allowed to gradually ease into the care issues required by AD patients. He was not like this when he left home. He came back in Stage 7! She had to "get it" overnight. Give the girl a break. She is here because she needs someone to hold her upright until she develops her Sea legs. (AD Legs). I think we need to read OUR posts to her. All she needs from us is encouragement and support until the Social Worker goes away, the lawyer gets all the mess in Florida straighted out and they meet with the neurologist (soonest date available was September). I can't imagine what I'd do if I was trying to cope with all she has going on. Peace be unto you, Jen.
Jen, in your most recent post I can see progress for you. You are facing that your 'picture' of what it would be like when he came home was just that - a picture. The reality is soaking in and it is hard. I would compare it to when a spouse is suddenly critically injured in an accident and out of your love you bring them home not really prepared for the reality of what their disabilities are now and the sacrifice you will have to make.
You had a year without him and in that year you dreamed of what it would be like to bring him back home. But now I believe you are realizing that is not reality. Since this thread has started I have seen subtle changes in your need to face reality.
Think of this site like a counselor. I remember years ago in counseling my counselor, after a bout of pouring my pain out, would hit me with some painful questions/facts to mull over until the next session. I remember getting angry at her (like you do to many post) - how dare her, etc. - but would mull over what she said. I didn't always agree with all she said, but then she didn't expect me to.
So hang in there - you are slowly making progress of changing from your dream to the reality of what this disease has done to your husband, marriage, finances, and life.
Surely I did not read that correctly. John's welfare is MY responsibility? Mine?
I doubt John is in harm's way..truth be known. Can't we simply say how we feel without being chastised? I believe that's one of the privileges we share on this site.
And, since you got me started, would you hire someone to care for your LO who has a history of drug abuse and a mental disorder? I don't think that would be your first choice. Nor do I think that would be his family's first choice. That is why they took away the POA.
OK.....we are all here for the same reason...not to tear each other apart but to support one another....and some caregivers have more disabilities than others and it may be harder for that person to be a caregiver...Regardless of our inadequacies, we have no reason not to encourage one another and to support each other. Our battle is with the disease, not with each other. I resent the personal attacks, and if anyone should be attacked, let it be me.....I am by far the worst caregiver here, and am considered the poster boy for "the neglectful caregiver'. So please, criticize me because I deserve it....I have no disabilities and I should be able to do a better job.....and I am not on any medications whatsoever..... (but I am about to think about that and drinking). OK...so reload everyone, and attack this disease.....that is our foremost important battle...everything else is insignificant..
I just want to die here and now........I thought that this was a place I coiuld be open and honest without a doubt or chastizement, but apparently not! I can't believe this! I'm gettting treatment, I've beeen clean since before John was gone from home, I've been taking good care of him.....I'm sosrry....I can't see through my tears......I dont' needc this kind of judgement!!!!!! I just want to be uinderstood that I'm going through some very scarey stuff that I thought you all could understand and help me with , with some positive feedbacK! I'm appalled by the lack of support. Goodbye!!!
I was always honest, no further comment. Meet Jen on Facebook or wherever she was trying to lure you to. ("it is more personal".) I am NOT attacking Jen, just trying to get her to see what she has posted that is cause for concern.
Sorry, Kitty you do not understand the situation. My husband had depression and has been on meds for about 20 years. My daughter , who is a nurse, is bipolar. My DH only had the lows but the daughter cycles in and out of the lows and the highs. With her meds she is able to live a productive life and yes, I would let her look out for her dad. Jen is doing the best she can and we should help her every way we can. We have been through a lot of your rants and we still love you. Have a little mercy for people who need to talk things through. I for one want to see Jen work things out. I can see her getting stronger all the time and "that is a good thing".
Okay, time for me to step in here. EVERYONE has problems. It is best to acknowledge that and not snap at one another.
If everyone will calm down and look at this, based upon everything that has been written, I think you will see that everyone is correct:
1. Those who are giving Stuntgirl support are to be commended, and you are kind to do so. 2. However, Kitty has a valid point. Stuntgirl is confused, conflicted, and by her own admission, has serious emotional issues. She was unprepared for what AD caregiving entails. AD is bad enough to contend with for those of us who are on somewhat stable ground. Stuntgirl needs professional help than cannot be obtained from a message board, no matter how well intentioned everyone is.
I think rather than snapping back and forth at one another, we should encourage Stuntgirl to give the caregiving back to the professionals in the best interest of her husband, and get her own mental health issues straightened out for her own best interests. I cannot see how it is possible to deal with such serious emotional issues AND care for an AD spouse.
"Take the oxygen first" - You have to be healthy and able FIRST, so you CAN care for your loved one.
Kitty - I think you need to calm down. And stop acting like no one can ever change. She is also in counseling and the counselor and facilitator of the group she goes to for drug addiction have to report by law if they believe she is harming John. From what has been posted, there are currently plenty of people coming in that would be able to see if John was in danger.
I do think she needs to put a bed downstairs for him so he no longer will have the stairs as a danger. And block off the stairs so he can't go up them.
And who are you to speak? Aren't you the one that just left her husband alone and is divorcing a man that is ill AND without any thought any longer to his welfare?
I resent you saying that someone with a mental disorder or drug abuse history is not fit to care for anyone. You are being very narrow minded and evidently do not believe in 2nd or 3rd chances. If your belief is true, then I can leave my husband right now. I suffered severe depression in the 90s and have been suicidal all my life. I haven't acted on it for years, but the thoughts are always there.
If she were not accountable to anyone, then I would really be concerned for John's welfare. But she has plenty of people in the picture right now (unless she has lied about all the different people included Adult protective services). Also, if I remember correctly, Joan has people monitoring this site and if they felt he were in danger would contact authorities.
Yes, I get tired of Jen venting about how things are not the way she hoped. How they are in fact how she was warned. But she has brought him home and so the job is to go from this point forward. (Do you want her to take him back to Florida?) I do believe he belongs in a nursing home but she is not ready. How many here say they know they should put their LO in nursing home, assisted living or AD unit but are not yet ready? How many times has it been said that caregivers wait on the average of 2 years too long?
Instead of lamblasting her, lets try to point out little positive steps she takes, and all of us for that matter take need the strokes/pats on the back, and keep her accountable without the beating her down. Evidently she was, at the minimum, emotionally abuse somewhere in her life, thus the deep desire to make this work. Let us keep supporting her while helping her as she faces reality - the reality that John is more than she can take care of at home. And, that when placed she can still see him and have the freedom she was so use to.
I encourage you Jen to read the post of those that have placed their spouse, especially how it worked out so good for all once the adjustment was made. Also, to do a search of all your post and re=read them.
Joan-thank you for trying to defuse the situation. I think everyone means well but sees things differently. When some one asks for help but doesn;t care for the answers the fur starts flying
Kitty..please,pretty please, back off and end this please. Trying to get someone to see what they posted does not mean shoving their face into it....We can all go back to the posts and find something distasteful about everyone here...(especially me). Jen needs our support and encouragement...any fool can provide criticism, but only a wise person can find something positive.....so please, start your happy escaped life, and let Jen progress the best she can.
"Lure? ": What are you trying to say to me????? I'm disgusted with your comments and won't be available for further discussion. Thank you all who have supported me in my times (many) of need and encouragement. You know who you are and that you've helped me. I'm sorry, but this place has become too judgemental and unfriendly for me. I considered you all my FAMILY where I have had NONE. Some of you still are. You know who you are. I love you still, though I may never meet you. Know I 'm sdoing the best I can with my life God has given me. Remember that words spoken (or sent over the internet) can never be taken back....they've been spoken and have landed. I can't imagine why I've become such a target. I wish I were as good a provider and cartaker and long-sufferer as kitty. ....whomwoever she is.....no eo-mail, no real name listed.
.Kitty....and the goodnews for YOU is exactly what Gourdchipper said.
As for the rest of us, we'll be staying put... for no telling how long. Bama, thank you for your input. What a testamony! I believe if your daughter is still allowed to oractice NURSING, while diagnosed as Bi-Polar - she is living proof that it is a treatable disease and does not interfere with one's ability to be a productive and responsible individual. Phranque, I cannot attest to your personal caregiver skils, but I can say that you have done a wham-bam job of taking care of all of us, while covering Joan's back. Your humor, while being totally wierd, is appreciated more than you know.
Jen, I'm sorry if you mis-understood what I was trying to say. With the issues you have acknowledged, I was only trying to say that you need to take care of YOURSELF, or you can't take care of anybody else. Your posts indicate that all is not well with you, and I was only trying to say, get a physical, talk to your therapist about your meds. Since you brought John back from out of state, he deserves the best Jen you have to offer. That's all I was trying to say.
I'm feeling bad for Joan, who went to bed because she was exhausted. I hate for her to wake up and have to figure out what to do about all of the arguing.
Please let joan sleep...we can handle it...she spent so much time today already...by now, we should know what to do....and what would Joan say.....from her post above:
"Okay, time for me to step in here. EVERYONE has problems. It is best to acknowledge that and not snap at one another. If everyone will calm down and look at this, based upon everything that has been written, I think you will see that everyone is correct. "
Tonight is the beginning of a full moon.......ok let's all get some sleep, so we can have more fun tomorrow.......
Hey! Tempers are flaring and as Stuntgirl said words can't be taken back. Others have weighed in on Stuntgirl and her situation and I'll refrain from that as it's late and I'm exhausted. I think Stuntgirl's writings can stand on their own and as others have said a reading of them gives a broader picture than just the immediate conversation.
I very much regret reading the judgments on Kitty's character with regard to her decision to strike out on her own and save herself financially and possibly physically from a husband who has no idea he is suffering from any impairment. It was just a short time ago several people were pleading with her to get out immediately as they feared for her safety!
When I posted in a confused and fearful state several months ago Kitty was the first to respond and did so immediately by e-mail. I'll never forget that caring and supportive e-mail from her. At a time when I felt most alone in the world I felt embraced by her genuine concern. I consider her a friend and feel confident her posting of her opinons come from a place of concern (informed by her own relations) for another. Attacking Kitty's personal situation is not relevant to the discussion. Attack the points she makes, disagree with her strongly if you wish. But some of the things said about her would have devastated me and she does deserve them.
I hope it is obvious that I mean to say that she [KITTY] does NOT deserve them.
Kitty, you have been there for so many in this community and your presence here means so much to me and I'm sure many others. I hope you are hearing from some of those people now. I know this has to be a difficult time for you and you must be truly exhausted about now. I was moved by your mentioning in a recent post that going back to cut your husband's hair was an avenue for you to keep in touch with his situation.
My point was that Kitty has strongly judged Jen when she has done something that could just as easily been judged as strongly being wrong to do. But, she did what she believed she had to and the same with Jen. We may not agree, but it has been done so support and accountability are needed from all, not judgement or 'I told you so'. We now know that Kitty's view of Jen is tainted by her bad experiences with her sister who is bi-polar.
I don't remember hearing people tell Kitty she should have never married her husband. No, her situation was dealt with in the present and forward - as it should be. My point again - Jen as already brought him home, so to keep bringing up that 'we warned you' is wasteful. We need to help Jen get from this point forward.
Jen, Keeps asking for friends, someone to talk to. She has her e-mail address in her profile, if you are willing to get involved with her frustrations, then send her a private e-mail.
Isn't that what we are all here for? To get involved in EVERYONE'S frustrations? Jen is young, has/is going through a lot. While some may not agree with her actions or voiced venting, this is suppossed to be a non-judgmental forum to help and assist. If the person chooses not to take our advice, so be it, but we can still encourage and hold out that rope to them. May God help us all to be all that we can be - to our spouse (spice), to our friends and to our cyber friends.
I am new here and don't really "know" any of you. I find this thread very disconcerting. Let's not alienate each other and instead go back to being supportive. Reading here has really been a God-send for me in a very short time.
John is fine..he is at home, still alive, 81 yrs old I believe, and has ad. Jen is doing as much as she can, and also has several inhome nurses and helpers coming in....Under the circumstances, I think the situation , while perhaps not optimal, is adequate and much better than being in Fl
Sage and level-headed spouse divvi tended to write off yesterday's bad manners and name calling as just full moon effects -- I'm certainly willing to let it go at that, and try to move on with positive help/support for one another.
Speaking of strange behavior, my DW spent all day yesterday in bed after doing a fair job of eating breakfast -- even being unwilling to get up for an early afternoon watermelon snack, which I thought would surely tempt a Southern raised country girl. I finally insisted that she get up around 8:00 p.m. for dinner, hoping to stimulate her appetite with fresh corn on the cob (cut off to make it easier for her). One bite and she pronounced it too sweet, declining any more. So I tried her on tuna salad, which she also pronounced too sweet after one bite (it DID have apples in it). In desperation, I asked if she could think of anything else that she might like to try -- how about some banana pudding Bluebell ice cream? "Yes, that sounds good" -- and she ate every bite with no complaint of it being too sweet -- go figure!
Absolutely -- we've been Blue Bell fans for years-- used to pass through their home base in Brenham on our trips West -- and yes, they started marketing it in FL several years ago.
I bought Blue Bell in Georgia AND South Carolina supermarkets. Those happy cows are working overtime. (Referring to their happy, yodeling cows in the comercials)
Hey Gourdchipper, I'll bet she meant not enough sweet, she's thinking I want something sweet so that is the word that comes out but not the real intent of her wish. I'm having some of these word issues with my husband and he will demand he is full and not hungry but won't turn down icecream or cookies or candy ever. He can stand at the kitchen counter for an hour snitching those things. He will eat a whole bottle of marachino cherries and hide the empty jar somewhere, usually in my coffee cupboard, since he never uses anything in that cupboard, I think he thinks it is hidden from me, too.
That was the most beautiful moon I have ever seen last night!
Oh, back to the subject of strange behavior, my husband sprayed his head with shaving cream yesterday and then called me to help him all bewildered by this strange white foam all over his head and shoulders. I asked him if I could laugh and he said okay, then I got hysterical, hee heeeee hee. What a good cleansing laugh, I wish you all could have one. I also took his picture which he was pleased to do as he likes his picture taken, (probably not covered in shaving cream though.)
Oh Jules, that's funny. Do you remember my husband filled his mouth with shaving foam when he was preparing to brush his teeth. Recently, he poured f after shave cologne into his mouth to rinse his mouth after brushing! His biggest booboo though was when he lost a hearing aid, and after searching for it - I found it shoved way up inside his nostril! (That almost rquired a trip to the ER to remove it, because it was lodged up there so tightly.)
Nancy B OMG, I'm blowing snot bubbles laughing, hearing aid up his nose, that's even better than my husband brushing his teeth with micronasole cream for yeast infections. I'm pretty sure you don't want a yeast infection in your mouth, but still, toothpaste is better. Heee Heee heee.......that's my favorite yet, hearing aid up the nose. Thank you for that image in my head.
You just never know what tomorrow will bring. Just when I think I have seen everything, he'll pull another 'stunt'. When I told my kids about the hearing aid fiasco, and the problems dislodging it, they tried so hard to listen sympathetically, but finally, after they held it in as long as they could, they put their hands over their mouths and the laughter came out with spit and tears in their eyes. So much for their self-control. They tried to listen to my tale of woe and frustration as I tried to get it out, but like Jules, they "lost it". It is funnier after the fact. Trust me.