I'm reading all the time. I am so tired of seeing my life pass me by. I sit here and I can't stop thinking. Everyone gives good advice, but I feel like it just doesn't help. I went to visit him at the home yesterday. Now he is on oxygen. They said they took an x ray and it's clear. So why is he on oxygen? No answer. The doctor from the facility comes in ONCE A MONTH. That is horrible. I can't even have our personal doctor go in because he is not affiliated with the home. I feel like all I do is visit and watch, visit and watch. I have a dog. She is not helping me. Nothing is helping me. I'm so sick of being sick. Yes, I'm on anti depressants. That doesn't even work. Yesterday I felt ok and today I'm back to feeling hopeless. My voice is raspy from screaming at the top of my lungs. It just doesn't get better. I'm sorry I am so depressing, but that is the way I feel today.
OHHH MY...sorry that you are in such a funk. I am feeling better today then I have in a couple of weeks...so that makes me want to say to you what my mother always said to me...."This too shall pass"....actually, it never helped much...but she was right. I have been where you are now and it did pass. Just know others (especially from here) know and understand the pain you are in and our thoughts are with you. THIS TOO SHALL PASS.
Oxygen is given to facilitate the breathing. They don't have to breathe so hard then. If his lungs fill up then it becomes another problem. I have seen oxygen administered right up to the very end. Easier on the patient.
My prayers are with you. I can't imagine the pain you are having. Your work is over, Paula. Now God is doing his work. There comes a time when we have done everything possible and we have to admit it to ourselves. That is the hard part. There is always the "what if". Hand it over now to the Powers That Be. Only then will you know a little peace.
All anyone can really say is that we understand. Scream if you feel like it. I screamed at the air, I cried until my head nearly exploded. And, yes, dear Paula, oxygen is routine, just to make things easier. I was quite young when I learned that 'this, too, shall pass.' It had nothing to do w/AD, but Nature guides us, whether we want to go that way or not. Rely on the people here to help you, they won't let you down. No one can change the outcome, but they can use their experience to help you thru it. You are not alone.
Paula I have been where you are and understand. There is really nothing we can do to stop the AD train that takes everything in its path. The video offered solutions made by changes that we can't do. Each day is the same-or worse. You said you are depressed and Mary tried to help by offering the video.
Paula M I understand the wanting to scream,I feel that way most of the time and my DH is still home with me.I know having him where you are not in control is much worse. Just hang on and scream when you need to,cause there is not much else WE can do for this darn disease!!
I want to scream but for a whole different reason than Paula M. My DH is going through a disagreeable stage and I am having a real hard time getting through this. I think I will do OK when he is totally bed ridden but this arguing over every detail of his life is driving me mad. I am afraid I will smack him and I don't want to be abusive but he fights me on every level from taking pills to washing his butt!!!! Then he blames it all on me. It just gets so frustrating that I envy those of you whose loved ones are in a NH or those who sleep 18 hours a day. My DH is up and into everything 18 hours a day and I am tired of it all!!!!!!!!!!!!!!!!!!!!!!
phil4:13....... I am in a very similar situation with DH.. I don't care how agreeable the subject matter, he will find the negative, make it a federal case and argue about it... Makes no sense... It's frustrating to try and talk , simply, to him... I am aware that he's lost control of his life but hard for me to face the fact that, tho I try my very best, it will never be enough... I agree that getting him in a N/H would be best for him and certainly would give me a fragment of sanity.. They would see to his every need,agreeably, and maybe I could smile again.."Negative" at this house has been going on for 5 years so it is a way of life for him.. We are ALL tired.....Sorry we, here, have to share such a sad event in our lives..
Paula, it is a vicious cycle, one most of here understand intimately. Sometimes doing just what you feel like doing is what you should do. Hence, if you feel like screaming at the top of your lungs, you should!! I have done so many times myself. I have posted here before how I use to grab a stack of plates, head for the woods and just throw them up against a tree as hard as I could, often I ranted, raved and screamed out for the injustice of it all. The sound of plates crashing soothed my wounded soul. The act of throwing them got out some of my frustration.
Another thing to note, just because the facility doctor makes his normal rounds only once a month does not mean you can not speak to him. You can and should. He will also come in more than just once a month on a need basis. I had to fire Lynn’s doctor. Do not accept less, do not let them railroad you. If your questions are not being answered to your satisfaction, talk with someone higher up. If that doctor will not return your call, or come when you feel your husband needs him, you do have the right to demand a different doctor.
First things first. If I took plates outside my house and threw them, it would hit another building or car and I would be sued. ha ha ha. I wish I lived near woods. That would be peaceful. As far as this doctor. He is the head of the place, so he's on the board. He doesn't like to be bothered. He does his visits, cares to the patients, answers questions from the nurses. At the beginning, I would call him and he told the nurses to tell me to fax the questions and he would fax back the answers. I never had to deal like that before. I want the best for my husband, so if that means following this blanking doctors rules, I have to.
I just got a call from our personal doctor. I love him so much. He wants to meet me at the facility to see him. I didn't even as the doctor to do this, he did it all on his own. So I'm going to take him up on it.
Currently I am going through the same thing. For whatever reason my hb has been in a very bad mood for almost a week. I can't say anything to him at all without him jumping down my throat. I am getting ready to place him in a facility. I cannot handle it anymore. He is dragging me down with him and I refuse to go there. I need to look out for myself and my boys. He has sucked all my energy and life out of me. I just can't do any more. Good luck.
Lee, my heart goes out to you! Your struggle as been long and hard. As sad as it is, I am so happy to hear you are now going to look out for you. ((Big hugs))
Well I roll my eyes a lot...have been known to go beat up the huge plastic trash and green waste bins.. My sister in law died Sunday after a 17 month battle with lung cancer. They are in TX and I am in CA. I don't have any funeral data yet but DH is beating me up about getting to the funeral...and there is a rub...our grandson is coming on the 14th and DH has a neurotrax test on Wed..we all know how long it takes to get in with neruopsychs...
But then by the end of the day he will tell me to call my sil to see how she is doing...the other day I said itis hot in TX she is cooling off....
She put up one heck of a fight and in the end the cancer didn't kill her the meds did..she developed ulcerations in her stomach and the doctors thought it was the cancer and missed what it was. She was in horrible pain..had emergency surgery and was able to reply to doctors with thumbs up or down for her answers..so she was aware...but something else happened and one night she needed assistance ( don't know what the problem was) and in the end her lung would not work and she never could come off the ventilator and did not want artificial life support..she died at home in her favorite sun room with her dog in her arms and family present. She quit smoking 12 years ago.
Ahhhh Paula, yes I am a country girl and would be so lost without my woods and the lake. Nature has a way of comforting me. Ok, so you can't throw plates....perhaps you could get a punching bag, or go to a batting cage...or something like that. Or maybe it is just me that finds relief in physical acts like that?
About the doctor, I don't care if he owns the place! There are rules and regulations that he HAS to follow. The doctor I fired was also on the board at the facility. I did try for a long time to be nice, but we all have our limits. Advocacy is HARD work, as you are finding out. What a blessing your doctor is! I am so glad he is coming, that must bring you some comfort.
Another thing Paula, there are people you can call to help you advocate. Your state dept is one, the Ombudsman another. And don't forget Hospice! They do care in facilities as well. As always, keeping you in my thoughts and prayers <3
Now when I get really annoyed I go pull weeds and today is now one of the weed pulling days..had an appt today at 2 for the neurotrax testing....get to the office and I am told we have an appt with the doc..no I say it is for the testing and this appt was made some 6 months ago for today.. Well can we do it Friday...well we have a friend coming up at noon...on well the next opening is in oh 4 weeks..not good I am going to Iceland......their bad... finally the person to does the testing actually overruled the doc...got us in at 11 on Fri...just wonderful...grrrrrrrr...How do these wizards of smart get appointments so wrong...let us be late ane some doctors can charge us..can we charge them for their screwups?
Mimi, come on over to my house - I have lots of weeds that need pulling and cant do it now - threw my back out! Also....I have learned to call the doctor's office at least the day before to confirm appointments,especially if it was made a long time ago.
I doubt if you would get paid if you billed them! LOL
Vickie, the doctor's office called to confirm the appointment...then we get there on time and.....problems at the office and they didn't call to change the appt or notify us..
WEll DH took his 90 minute test...actually a little less than 90 minutes but he seemed a little more tired when he came out than the last time he took it BUT he was able to tell us a little of what the test was like...so figure that one out? His report meeting is 1 Aug so we will then know the degree of change. I think there will be some Physically he walks so much slower and grabs on to things as he goes. Got him a nice tallish walking stick made of Hickory. Lots of folks here use them..good for warding off a dog or another animal if necessary..but no he won't use it..won't even go for the walks the doctors tell him he needs. I give up..
I used to get so upset when my DH didn't do what I thought he should do for his health. But when I finally realized there is only so much I could do and if he didn't want to eat breakfast at breakfast-time or go out for a walk or do any kind of exercise, I calmed down. I guess I felt if I couldn't make him take care of himself there was something lacking in my caregiving. I think I'm a better caregiver now that I don't stress myself over such things. I must admit, though, that if I had to take care of overflowing toilets every so often, I wouldn't be so calm. Fortunately, I don't have that problem----yet!
Well I didn’t scream at the top of my lungs, but I did vent. My DH has been especially clingy lately. If I am out of his sight for more than 5 or 10 minutes he comes looking for me & then he’ll ask me if I’m leaving him. He is more docile lately & when he does get angry he gets over it easily & tells me he is sorry. BUT it is very SMOTHERING & I have been with him 24/7 & I haven’t had a break for a while, so this morning I felt like I was going to explode. I was hoping that he would sleep late, but no such luck. He woke up & the first thing he asked was if we were still husband & wife & if I was going to leave him. Well that was the last straw. I did explode & I yelled at him. I told him that we were still husband & wife, but that didn’t mean that we had to spend every minute together. I yelled a little more & when I stopped he had that hurt look on his face (I was just glad that he wasn’t yelling back) & you know what. I felt so much better that I went & put my arms around him & told him I was sorry & that everything was OK. Then I made him breakfast & helped him shave. Right now I feel so much better. I guess I just needed to get it out & thankfully he didn’t get angry. How long will I be good for? Who knows, but it’s all about right now, & right now I’m fine.
Wow, our stories are all starting to sound alike. Praying for you, Elaine. Ditto on most of the above, but especially the clinginess right now. Weather here has been mild, in the low 80s, but last night when I went up to go to bed, it must have been about 90 in the bedroom -- ceiling fan turned off, windows closed, DH sound asleep, and I found the space heater in his bathroom on full blast. Now I KNOW any hope of going anywhere for a few days alone is gone. At the every least there would be a fire. No one wants to step up to the plate, and as you all do, I feel so alone. I would give anything just to have a deep philosophical conversation with someone, or just HAVE SOME FUN! I think I have forgotten what that is like.
spellchick, I thought I had forgotten what fun is too! A few weeks ago I had to go on a 500 mi. trip (with DH), to go through my murdered son's belongings. Hard, long trip. But the last evening there, friends drove 75 miles to meet us and took us to dinner. The husband kept DH amused and I had some REAL conversation with my friend, let my hair down, drank my wine since I wasn't driving - and talked and talked. I don't think I stopped. But my friend said - go for it. It was a fun evening - over too quickly. I can't leave DH alone more than1-2 hours at the most. And he doesn't travel well. But I will never forget that evening. Most relaxed I have been in years!
bluedaze*, I guess it doesn't take much to make me happy these days! Or to have fun. LOL Too much sadness, too much aching. I'm going for the happy days now.
vickie i agree so happy to hear some good things are happening. my motto could be... ' it takes a really bad day to recognize when i have a really good one!" if we didnt suffer thru the bad ones how else would be know when they are good. :)
Vickie, when I first joined these boards in April, I think I read everything I could on this site. I saw the article about your tragedy of losing your son; I meant to mention my sorrow about it to you. But right after that, my baby brother died of a massive heart attack, so am just now getting back on track. As I said somewhere on here, we had four deaths in the immediate family in five months: My ex-husband (my four kids' dad, and we were still good friends) -- they stayed with us when in town, and we with them when in their town; then a granddaughter suicided in March; three days later my DH's only sibling, his sister died; and then May 11, my youngest brother of a massive heart attack. He and I were very close, and he was the one person I could confide in with all the Alz stuff and he was such a good listener. We talked once or twice a week, and I knew he was just a phone call away. I still start to call him and realize that I cannot.
Vicki, I am so glad you were able to have some fun, even for those few hours. If our close loved ones EVEN PARTIALLY REALIZED what it would mean for us to get a break and have some fun and deep conversations -- even for a couple of hours, I would hope there would be a few more offers of help. Maybe not. For me, this has only been going on for about three years -- maybe a few more before that -- but the load got heavier about three years ago. Am finally getting some counseling, and I was told to GRIEVE! First time I was given that as an assignment -- to grieve the four as well as DH's disease. I HATE THIS DISEASE. It really stinks, doesn't it?
Wow, these stories are as if i wrote them, wierd! I think it must be the disease that makes them cold all the time. My DH wants our air cond to be on 80.I go around turning on ceiling fans and he turns them off!
Sallie, I, too, am sorry for all your losses. Grieving is hard for me- don't know why, I try not to analyze myself too much. We both lost so much in such a short period of time. First, my Mother in Oct., best friend in Nov., son in Dec. I don't know how you really can grieve all of that! And DH can't remember all that happened to everyone, will ask questions, then I have to re-live it all over again and again.
You are where I was last year. The house, according to dh, was always too cold. I thought for sure he would wreck the thermostat. This year he doesn't even know how to use that thing. This is the first time this house has felt comfortable in the summer. Right now dh is more interested in looking for all sorts of little bugs to kill. Finds one and then brings it to me. Freezer on the bottom of refrig stopped working yesterday. Didn't have too much in it so things thawed quickly. I kept dh busy washing it out. Repairman can't come out until Monday. Always something.
Oh boy, I win in this catagory. My hb wears his jacket in the house and even in the screened porch when the ceiling fan is on. He also is a bug KILLER....he even kills the ones on the outside of the screen, keeps a can of bug spray on the table. Needless to say sitting in the screened porch with him isn't very relaxing!!