First of all, let me make my apologies to joang for any trouble she had to go "fix" yesterday... to tell you the truth, I've become a little frail myself and overwhellmed with work and worry. As many of you know, I live on a working farm and was making hay yesterday...baling...some of you live the same lifestyle and can you imagine having to run in every half hour to 45 min. to see that all is well???? Trying to keep up with all that is going on (and NOT going on) in my life, needing help around here, doing everything myself, worrying about being outside when some nurse of aide or social worker pops over. Anyhow, I have irritated some "regulars" on this board whom I have never wished to alienate. Somehow, I'm guilty of violating some sorts of rules about how to respond to comments on the threads. Felt a bit attacked at times, so I (silly me) tried to sign on with another name.....secret squirrel (a favorite cartoon character when I was a kid...it just came to mind). Just wanted to start over, be able to post meaningfull remarks where I though it was appropriate, even participate in some of the "silliness" discussions.....like our fake cruise.....but have no personal info or history disclosed. No dice. I don't know what I'm doing wrong, but I need my family here. So, please, tell me via e-mail if I step on any toes, please, and don't thrash me publicly anymore. I love each one of you (even the one's that are a little too severe and serious) and have benefited from all the help I've recieved here.....even when you've been "off topic". That's apparently been some folk's complaint about me. Making one person's problem about ME. NEVER has that been my intention. I'm sorry and please forgive me. Let me make amends for any hurt feelings. Personally, if I have a terrible problem to face in the future and I make a comment about it, say I loose a parent.....instead of a long stream of "oh, poor Jen, we're praying for you", "our prayers are with you", etc., etc., ....please tell me a story of your own experience....I will NEVER accuse you of going off topic and trying to make it about YOU. I'll take it as you trying to make me feel better by RELATING to me. Yeah, then I'll probably tell you a story of my dad or whoever passed, someone else will relate another sweet story and so it will go. And, to put it simply, that's what I've been trying to do at times....relate my own issues so you don't feel so alone. I remember how alone and terrified I felt when I first found this board. Sometimes I still freak when something goes wrong, but like you, I can always find someone to show me it CAN be worse or it CAN be fixed. Anyhow, here I am hanging onto my own shoelaces tied to a stick......Can I rejoin the screeching, sobbing masses here? I AM very talky and social. I have no outlet but you all. I HAVE made some good buddies via e-mail, so continue to e-mail me, please? (by the way, there are some who are extraordinarily concerned for my health care and John's care.....please know that we both are under physicians care, I would never mess with my or John's meds without dr's orders, I'm doing the best I can for both of us ........ and none of us is in danger ...... except that I'm murder on large machinery lately (found some LARGE rocks here unexpectedly) and so the bank account suffers. PEACE. Jen.
Jen, if we didn't all feel a little nuts from time to time, we wouldn't need each others help. I, personally, have no one else to "vent" to and find this group a great resource. Just knowing that there are others who are or have in the past experienced the same thing really helps me keep my days a little more positive. The only suggestion that I would like to make is to be carefully that you don't pass on too much specific, personal information. As others have mentioned, there are others out there reading who don't have an interest like we do.
Take care and I kind of figured out who you were already. We have had a couple of other members who changed their names for reasons also.
Just came back from my "women's issues" group at my psychologist's office.....dragged poor John along. He has to wait in the waiting area for an hour, but this week he didn't groan about it. He likes the attention of some of the staff there, I think. They treat him like a puppy. Took him through the drive-thru at KFC afterward...a thrill for him. We can't go into restaurants anymore. My doc thinks I need to take the advice of the visiting nurse and social worker and place him. It makes me so sad. I've accomplished so much in being able to conquer all the obstacles and get him home with me to Virginia. No, he ISN'T okay and normal or much functional....but he IS here and knows he is home. Sometimes I loose him to his imaginings. Sometimes, he is loving and says such nice things to me. Most of the time lately, he is alseep and not paying attention to anything. If left to himself, he'd pass. Yes, it's a pain the ass to take care of him like I do. There is nothing left for me to gain by keeping him here with me, really. I'm just not ready to place him. He tells me when we discuss the possibility (if he becomes so bad off that I'm not able to care for him properly, gets hurt, etc) of being placed in a nursing home that he will kill himself. He knows he's home and this is where he wants to be. And, so far, so good. My doc asked me who I'm doing this for.......she insists I'm doing it for MY own good and wishes and NOT for John's welfare, no matter how good of care I'm giving him. Because I can't be AWAKE for 24 hours a day. I'm really confused. If I placed him (if I could have no feellings about it and go ahead and DO it), the family would be back on me again with all their ire. Argueably, why should I care since not one of them (except our youngest daughter this weekend) has even called since I brought him home. *sigh* Just don't know what to think sometimes. Also, to some your all's relief, I was told by "doc" that I wear my heart on my sleeve and give too much information to people. I'm too open and maybe it scares people off and puts them ill at ease to say the least. I speak too much off the cuff and make remarks that I really should think through before I let them pass across my lips....For instance, today I had made a flippant remark about my tractor and how easy it would be for me to fall off and be a grease spot under the wheels on the side of a hill.....I was kidding and jokey about it. She took me seriously, thinking I was voicing some sort of verbal death wish! I'll work on that, but it's been my nature all my life.....just feel I have nothing to hide or be ashamed of. Thanks for listening,if anyone is anymore. Yours, Jen.
Jen...I have often been told that I open my mouth before I engage my brain. Things don't always come out like we intend it to. I am glad that you apologized and I am glad you are posting again. Most of us knew who you were and as you know we posters don't like playing games. I, for one was really worried about you. This journey is never easy for any of us and we all need to vent once in awhile. Stay with us. We love you.
Really wasn't "playing games" on anyone.....this is NOT the place to do that. Just wanted to start over again without anyone having any info or prior judgements about me. Honest. Look at my posts as "secretsquirrel". I hope you'll agree they were relevant.
Bama, i just saw a pic of you on facebook! is it a current pic ? you said you are in your 80's???? you are so lovely--we all hope to look like this! whats your secret? divvi
Jen, you are now facing what so many of us are facing also. There comes a time when you just can't be everything to your spouse. He now needs staff more than he needs a wife. You can and should still be a part of his life, but it should be while he is in a local nursing care facility. The safety of you both depends on it. Take a deep breath and move forward.
Susan, this is so hard. My therapist gave me ANOTHER card with the serenity prayer on it as I was leaving. She points out every time I see her that I am not moving toward acceptance with much grace....or willingness. Believe me, you all will hear a lot more venting from me about this subject before he goes anywhere. It's just something I can't wrap my head around. For some reason the therapist's comments said (to my own heart) that I wasn't taking good enough care of him. Its so hard to let go. I can't bear the look in his eyes when we talk about it. I've gotta go put jim to bed.
Divvi... The picture is 8 to 10 years old. It was the only one I had in Pictures I could use. I have always hated to have a picture taken and ran from the camera. My printer is messed up and will not scan a picture to the computer. Since I stopped doing the Lady Clairol I found out what color the hair is. I had been coloring for over 50 years and discovered I am not a blonde anymore. It's more a brown with a misting of gray now. I'll get up one morning and be blonde again or maybe a red head. Girls just want to have fun.
StuntGirl, it's good to read you again. I think you are doing a great job, with all the things you have to do and put up with. Keep up the good work, and you will know when you are ready to face the good and the bad of placing John. I know it isn't easy....I'm going to be facing the same thing some time in the future, but I can't tell when at this point. But I know it, too, will be a painful decision at best.
I tried to talk to my daughter tonight about what my therapist and the social worker said....it's not that I'm not doing a good job of taking care of John's needs....to them, it's that I can't be AWAKE for 24/7 and in their professional book, that's the kind of care he needs. Right now, I'm a VERY light sleeper and am aware of when he gets up to go to the bathroom.....no incontinence issues since his UTI was treated. They're worrried that one night, he'll forget and take a wrong turn and take a tumble down the stairs. Right now, I keep lights on in the hallway and in his bathroom. He's getting back and forth on his own. I understand the professional's concern, but I'm not ready. Trying to make peace with my girls....told my one daughter (who tells me they're afraid to call because I'm mad at them all) that their feelilngs aren't my problem. I HAVE nothing against them anymore and can't and won't keep them from communicating with thier dad. That's up to them. Going to call and invite them tomorrow....two of them have blocked me from their phones and e-mail, though. So, I really can't help that situation. Up to them. I have no control over anyone's feelings but my own. I HAVE accepted that. Geez....what did people do in the old days when there were no nursing homes, no social workers, no Adult Protective Services, etc.....they did the best they could with what they had and let the old folks and impaired live out thier lives. *sigh* But, then, they had bigger, extended families that lived together or at least near each other and communities came together for each other's needs . It's so different today. I wanna have a good time tomorrow. Wish some of you could come over. I have extra room. Love ya.....g'night.
StuntGirl, I can understand having the farm and needing to get work done. What concerns me is the 45 minutes or so that you are out away from the house he could get up and fall. What if he got up just minutes after you went outside? He would be in a bad way for maybe 30 minutes. Just think about the whole picture.
I have a farm also. I have to be out every day to care for the animals, etc. But I never leave hubby unattended. I have someone come every day and set with him while I do my outside work. If I couldn't have someone come in and help, I would either place him or sell the animals. I don't want to take a chance of having him get hurt or wonder off. I couldn't live with that on my mind.
I'm not trieing to be mean, I just want you to think about what could happen.
I said this before, you need to block the stairs. Either put a bed downstairs for him and block so he can't go up them. Or block the stairs so he can't go down them during the night. When he is downstairs you still need to block them so he can't go up.
My DH gets up early in the morning and slips out of the bedroom without waking me. I worry a lot about this. Talked about putting a latch on the bedroom door, son vetoed it because if something happens to me we would be locked in the room. Maybe some kind of alarm (loud). I'm also thinking about a baby gate across the bedroom doorway with a latch he can't open. Jen, I know how you feel about not being ready to place because I am to the point of thinking about it and it just about kills me just thinking of it. Our kids all think it is time but I'm just not ready. I agree it is really playing with fire leaving John alone while you are out doing the farm work. Is there someone who could come and just sit with him, or be in the house somewhere while you are outside?
This sounds too simple to be true but I have read it over and over. Some AD patients lose depth perception. If you put a black rug in a doorway it will look like a deep hole to them and they will not cross it.
I used baby gates at the bottom of the steps and in a couple of doorways to keep my dh safe, he would go up to them and just turn around and go the other way but placing him was the safest thing to do for him even though it was the hardest thing to do. Gail
((Bluedaze)) That is a great suggestion. I first learned about depth perception from Trisinger. ((miss him))
((Jen)) The truth is, you will never be ready. Looking back I know I waited at least a year too long. I just wasn't ready! I do understand exactly what you are saying. Sometimes ((Jen)) we just have to love them enough to do what is best for them. Keeping you in my thoughts and prayers, Nikki
Nikki, I do know that you and I have a lot in common. I'm very torn about this issue. John, as I've said is "Dr Jekyl " and "Mr Hyde" at times.....although the meanness is less common due to his medications adjustments. He would pay no attention to his hygeine if I didn't manage it. So far, incontinence isn't an issue unless he has a UTI. He can sit and talk for a little while (although its a little disconcerting because he always has his eyes closed) and seem perfectly normal to a visitor. None of our children have spent enough time around him to see the decline. He is content to sleep his days away. Voices hunger at times, but really won't eat unless I serve it up to him (insisting he eat....then, he DOES eat more than expected). I'm really not ready yet. I feel like I'm being watched, because Adult Protective Services have been called in to watch this "case".....at this time, my attorney and I are assuming the complaint originates from the nursing home from where I removed him to bring him home to VA here. They told me he needs 24/7 care. Okay, I figure I'm giving him that. Yesturday, I was told, "yes, but you can't be AWAKE for 24 hours, seven days a week to WATCH him". ouch. No, and WHO can do that anyway? In the ideal world that would be alright...but I don't know of that ideal world, even if it's a nursing home.....for goodness sake....that's where he fell and lay injured for a couple of hours on SuperBowl Sunday this past year! I still believe that I'lll know when it's time....just not yet.
It's good to see you back here again, as you know I finally placed my wife about six weeks ago, it finally got to the point that I, the home health nurses and the sitter combined could not provide the level of 24/7 care she needed. It was unsafe for her to stay home. Now that I have placed her, I have been having some feelings of guilt, but I know it was the right thing to do for her safety, I know I waited to long to place her and now I know there was no other answer.
Hang in there girl, ((((( HUGS))))) this isn't easy, but I know you are going to get through it.
Just an informal 'pole' here.....Nikki and Jimmy, for example. What were your personal criteria for the decision for placement of your husband and wife??? If you don't mind my asking...if you'd rather not answer here, you can e-mail me. The visiting nurse was here this morning....overlapped the Physical Therapist's visit. He would NOT cooperate with either one of them. The PT was very open and frank with John and told him that he was writing his own ticket straight to the nursing home....a place he GREATLY fears going....because of his refusal to take care of his physical health.....cooperate with exercise, his own personal hygiene, etc. Lately, when you talk to him, he sort of has this strange, passive look in his eyes which don't look at you, don't focus on anything but rarely. Like a person who is very depressed and couldn't give a S--t. The caregivers are so disgusted with his lack of wanting (and downright refusal) to participate, they don't want to come back any longer. Like I said, he lies around all day and I am exhausted trying to motivate him just to get up to breakfast, up to bed for the night....the time between is spent on the couch sleeping, sitting up staring at the wall or dozing. He tells the home help that he goes up and down the drive and walks all over the property, comes up and down the stairs all the time by himself, that I just don't know about it. (?) Then, tells them that's why he doesn't want to do anything "right now".....because he's already had enough exercise for the day. I've been being very honest and loving with him, telling him the nursing home is facing him if we can't get some cooperation going here. We're going to try an anti-depressant for him this coming week which will probably help relieve some of his complaints about pain, I'm hoping. Anything to make his life more pleasant. I, for one, am hoping NOT to see his life end because of ALZ, but for some other natural and kinder cause. Jen.
Jen, put an adjustable baby gate halfway up your/his bedroom/hallway door. This way the racket he makes trying to open it at night will wake you up. I have one right at the spot where his stomach/chest would hit and this alerts him and me. Simple solution to a dangerous problem.. Very inexpensive at Walmart.
StuntGirl, It just seems to me like the folks coming to your house don't have a clue about dementia. Our DH/DWs cannot change their behavior, they don't remember the "warnings" and those warnings don't really have any meaning to them anyway. I doubt an antidepressant will make any difference. They "don't" do this stuff because they are depressed, they do it because part of their brain is not working -- and will never work again. The threat of a nursing home placement will do no good and is likely detrimental since so many people, regardless of their state of cognition, have such a negative reaction to that term.
i agree Weejun, using the 'threat' of a nursing home in a negative way to get a reaction, will only make it that more detrimental and lead to a more negative response when the time comes you actually need to place them. i think if i knew i will be placing my spouse at some point i would start upfront raving about how good and fun they are to live in-conditioning in a positive way- divvi
I agree not to "threaten" them with the nursing home. If they could understand what you were saying and act on it, then they wouldn't need the nursing home. I simply told Charlie that he needed to go live where there would be lots of people to help take care of him and that he would get good meals and that if he couldn't sleep and wanted to roam, there would always be someone awake to keep him company. I don't know how much of it he understood, but it made me feel better to phrase it that way.
We all need to do what we feel will work best for our LO. I knew Lynn would not stay if he thought it was him that needed the medical care. After all " there is nothing wrong with him" *sigh. To this day he thinks I live upstairs and that we are there for my treatments. He often says "I hate it here! But, I would never leave you here alone." *sigh. The man thinks he is 40ish , doesn't know he even has children, yet... somewhere in there he still loves me that much!
((Jen)) as for how I knew it was time.... I knew it was time at least two years ago. I just wasn't ready.......For his safety and mine he should have been place a lot sooner. For each new "incident" I came up with a way to try to "handle" it the next time. Like the kitchen fires. I watched him like a hawk! Yet, it only takes a moment to start a fire.
Everyone is correct... as much as we think we are watching them, no one can be alert 24/7. Lynn reached the point where he needed around the clock care to keep him safe. He needed someone who could offer him more advanced and skilled care. It was just extremely hard for me to admit that someone was no longer me.
I about killed myself trying. Last year, at 41, I had 9 TIA strokes. It was my doctor who made it crytal clear to me that the time to place him was long over due. He looked me right in the eyes and told me I might not survive the next TIA. Then who would care for Lynn? It was a real eye opener to say the least.
I wont kid you, other than burying my Dad, it was the single hardest thing I have ever done. But I knew then, and I know without a doubt now, it IS what Lynn needed. I just had to love him enough to let others provide the care he needed. He is safe, that is the most important thing. Sometimes, the right thing, is often the most difficult.
On a positive note...Now that I am not stressed out every day with 24 hour care, in my alone time I have time to reflect on our lives. Consumed in the hell we lived day to day, I wasn't able to remember our good times. I can now. I look at pictures, mementos of the life we made together. I am now able to treasure those times. I cry a lot, but I also smile. He was the love of my life. As hard as this is, I am grateful that I am now able to carry those happy times in my heart again. Such a gift. ((hugs)) Nikki
I agree with ehamilton. It serves no purpose to threaten them. I like the way she explained it to Charley. There is no perfect solution but you should be prepared to find the right place NOW!! You never know when he will HAVE to be placed. When I got hurt, dh had to go to a nursing home ( I had broken 3 ribs and could barely breathe). I thought it was short term and he would be home again but after he was placed, I knew immediately that I was being selfish trying to keep him home. I was deluding myself thinking that I was giving him the best care. Yes, he was cleaned and fed and looked well cared for BUT I was exhausted and you sound like you are too Stuntgirl. I "was not ready". We had a new caregiver that came to take dh for a couple of hours. Dh was still walking and eating MeConalds and "communicating" with the guys but this caregiver also had a wife (with ad) in a nh and had worked in nh all his life. After the first day, he gently told met that Gene needed to be in a nh. It was only a month or so later that he did end up in one and I know now even though I wasn't ready, HE WAS!! It is one of the most difficult decisions we make but we will be here when you need us to hold your hand and give you a big {{{HUG}}}. My prayers are with you.
By the way, Stuntgirl, I've had a very hectic few days so have not been on board but whatever happened, keep posting. We all need each other. I am so happy to have all of these wonderful people in my life because no matter what anyone says, unless they have walked in our shoes, they cannot understand our unique relationships.