for some reason I feel so tired and alone in all this tonight that I just want to go to bed and never wake up. I'm sure i'm not the only one feeling like this, but I just had to tell someone. Maybe tomorrow will be better. I don't know how much longer my spirit will hold out. Good days are rewarding, but ones like this are devastating.
(((HUGS))) to you. I pray tomorrow will be better. Just finished reading Dancing with Rose and it depicts the ups and downs we experience--w/no apparent reason, too.
TexasJoe, I think we all have days that we just want to give up. I think you have to hold on to that thought that "good days are rewarding." This one you described as devastating is almost over. I hope you get a good nights rest and that tomorrow will be one of THE most rewarding days you've ever had. This is something we're all in together. I'm glad you came and posted among friends that can understand.
TexasJoe, as Clinton would say I feel your pain. We have lived in this house since 1991 and this is the first time I have spend a night alone in this house. I must get used to it because I'll be alone here for the rest of my life.
Oh Texas Joe - I am sending you a huge cyber hug ((((HUG)))) I have had many days like you're having. The thing is, you HAVE to wake up tomorrow because your wife needs you. I know that it sucks, and it seems like an eternity of hopelessness, but we are warriors, even though we don't want to be. Not many people that I know could do what we do, but we do it. I know all too well the feelings of not doing a good enough job, and depression, and wondering "can I do this one more day?" Bottom line is, yes we can! Please hang in there, and continue to share your feelings. I love you, as do everyone else on these boards. We are family! Good thoughts and love, ~Di
TexasJoe, I think you gave StuntGirl some very good advice a few days back when she asked how she could stop loving her seemingly doomed ADLO -- you said, "StuntGirl...you don't. You try to find another to love also, I guess. I don't think there is just one Mr. or Mrs. Right for us..."
I've brought to the top a couple of earlier threads where I, personally, sort of bared my soul about the loneliness that I was feeling before this old worn out engineer began "working the problem" by beginning to go out occasionally (now pretty much weekly) with a special female friend. It's made a world of difference for me.
TexasJoe, your emotions are probably stirred up a bit after posting and reading some of these threads. its a slap of reality very quickly and sometimes we are not prepared for the fast courses and answers we get. the truth of this insidiuous disease is overbearing at times- emotionally draining and exhausting to the very core of our being. you have found a safe haven to vent and release tensions building for a good while and that is quite exhausting as well. reading others issues and what they are going thru can also be overbearing and we absorb not only our own pain and suffering but those of our friends here as well -too soon it becomes enough to make us depressive like you are feeling tonite. ridding yourself of these 'toxins' that build in our minds and speaking your own truths along with pentup feelings will help you thru these periods - nothing lasts forever, and tomorrow will start a new day new emotions. sleep tight, and best wishes =divvi
TexasJoe, Each day that has gone by since my dh was diagnosed, I have had to become more and more independent of him in order to keep our lives going. All the decisions we used to make together, I now make myself. A few times along the way, I have commented to him about what I had to do "tomorrow" and realized that he no longer shared these problems with me. Each change that came made me shed a tear yet I kept on going-somedays like a robot. You just do it!! Today, however I experienced something that I have not done alone in 8 years. My aunt died and I had to attend the wake and funeral "alone". Sure, my family was there but I realized as I sat in the church service that this was the first time I was in this church without him. I happened to look forward and saw my cousin and her husband together and I started to cry. No one knew it was because I was upset about my dh not being there. I managed to compose myself and then they sang "Ava Maria". This song was played at our wedding 35 years before in this very same church. I lost it. I was with my 83 yr old Dad and as I saw him struggling to walk with his cane, the entire situation became too much. Out of 13 brothers and sisters, he and my uncle are the only 2 left. Both are struggling with different forms of cancer and Dad begins chemo next week. Dad has lost 3 sisters and a niece in 6 months!! I try to stay busy and therefore try not to think about the lonliness but it is more and more difficult since I placed my dh 3 weeks ago in a nh. It's almost as if I'm afraid if I stop, I will be too overwhelmed with grief to go on. Thank God for this website that allows us to vent and then get the most remarkable hugs and support from our friends. ((((HUGS)))to you and everyone else who gets us through these days.
Kathryn0907, I'm crying and sending you warm hugs. I was feeling so sorry for myself and allowing myself to cry, and read how overwhelming your day has been. I wish you strength and and wisdom to adjust to all the changes in your life. I am exhausted from putting up a front....not just for others but probably for myself so as not to face my facts of life. I thimk perhaps we should be free to "lose it" just to let out the pain.
TexasJoek--it has been kind of a crummy day, hasn't it. DH just went to bed and I got to thinking about our 'visiting' today. I know for a fact that he hasn't said much of anything to me for 3-4 days. I'm noticing that I get really chatty when ever anyone is around. I feel quite foolish.
Two teenage grandsons are coming tomorrow for dinner, staying the night, going to church with us and doing yard work Sunday afternoon. I can't wait to see them. They work so hard and, naturally, I pay them for their time and work. But, I think I must drive them nuts with all my chatter.
Must not be too bad for them, though. They keep coming back. :) Sweet kids. They know I love them.
Texas Joe and others who are going through this, I just keep repeating the saying "courage is not the roar of a lion, it's quietly saying, I'll try again tomorrow." I'm having a hard time the last few days too. It's not a full moon is it?
One way to help the alone feeling is the phone (as well as this wonderful site). Just chatting on the phone to someone you love, or like feels like company. However, if I am on the phont, DH sits there and become angry because I am on the phone. Why do I have to stay on so long. he could be sleeping, but if he hears me on the phone, he questions me about who I was talking to what they said, etc, etc. How could you be on the phone so long when that's all she called for??? Because conversation took place after the initial question was answered. So the pleasure I found in chatting is now taken away from me becuse he's resentful of my getting company from soneone else. yes, it is an Alone feeling. Dazed, i love your quote. and yes, the last few days seem to be really bad, Maybe change of season.
full moon is may 9, so yes the storm is coming and could very well be affecting our moods all of us!. divvi some ask how could the moon be affecting a human so much? well look at the ocean the tides come/go and the pull is tremendous never ending with the high/low tide. now consider our bodies are 90%+ water and you can see the association! the pulls up/down are similiar. my own opinion divvi
I'm not "alone" in that my wife is with me all the time, except when she goes to day care. I thought I was doing OK, but yesterday the site manager of the day care center spent over a hour talking to me. She said I looked tired and depressed. She had noticed a change in the last 2 months, which is the time over which I have noticed real changes in my wife. At the end of my session with her I realized that one thing I miss is having another man going through the same problem who I could talk to, have lunch with, etc. Several of the women in my support group have formed such relationships. Among my close friends 2 couples have been dealing with AD, in both cases the wife has the disease. But one is in NJ and he just died of pancreatic cancer, the other moved recently to near St. Louis to be near his daughter. This group is the closest I have to someone I can vent to, etc. Thanks, Joang, for setting up this site.
I can't begin to tell you wonderful people how much your comments mean to me. I love you all and find it hard to write this thru the tears I am shedding not for myself, but for all of you and your similar pain. For the better part of our married life, my DW has been my strength, but now that she can't be that anymore, you are my strength, because I just happen to be one of those people that cannot survive alone, but with strength from others can make it through. You are my new family, and I thank God for that and for Joan and this site. One problem with the phone is that of possibly breaking down, but on this site, you can still do it but be understood and compose yourself to be able to continue. A great big group hug to you all.
I don't understand why so many of us are in such dispair this week. I can't shake the blues. So alone with no light at the end of the tunnel. My LO is physically well, but he is total care. On a good day he can spoon feed himself a chopped diet. No recognition of anyone or anything thing-not a glimmer.
Doneit...I don't understand either, but this has been one of the darkest weeks I can remember. Maybe I'm just tired..but the week began with SIL's unexpected death, not being able to fly from TX to SC for her Memorial Service, his 'other world existance', it's been especially depressing, sad, and lonely. Sure could use a real hug and a few pats on the back along with it about now.
(((((((BIG HUGS))))))) to all of you going through such a bad week. Maybe it's the weather or something??? My DH has had a pretty good week, considering. But my heart goes out to all of you going through these rough times.
I think it is partially due to the fact that we are all 'living on the edge', such that when one even little thing goes wrong, it may push us over to the intolerable side from the just getting along side.
Not everyone is having a bad week -- a pretty good week here in our neck of the woods what with a visit and haircut from my DW's long time hairdresser and an opportunity for her to sing with another old friend this past Wednesday, and then later that afternoon a stray female Doberman followed me home from my walk and has seemingly "adopted" us, much to my DW's delight. The dog spent the past three nights on our porch and is still hanging around, so we've bought dog food and have been feeding her -- while checking the lost and found section of the newspaper and on the humane shelter website daily with our fingers crossed. Must have been someone's pet because she's clean and well mannered, but no indication that she's ever worn a collar and nothing in the lost and found ads yet, so she's ours for the time being at least, and is providing some diversion for all of us and an excuse for my DW to sit out on the porch with her.
i just had the most awful visit with dh, he wouldn`t open his eyes, cried when ever i talked to him,wants to still come home,says i love you and i`m sorry, crys he can`t fix whats wrong with him, says he hates the people there,he said made him go to work at 7 in the morning, and didn`t let him go to the stock car races, never went in his lifetime. he fell 3 times in the last 2 days, they found him on the floor next to his room in the hallway this moning, i feel as if i just let him down and don`t know what to do , i want to curl up on my bed and stay there. he was making such distorted faces and getting mad at me, i am afraid to go and see him again.
marygail, I'm so sorry you are going thru this. It must be devastating. Like lmohr, I haven't had to go thru this one either (yet), so I can't give experienced advice. I can only tell you that you definately have not let him down! You made a decision that was necessary, as excruciating as it was for you. It was loving and un-selfish. Please take care! ~Di
Marygail, can you try to make his room look more like home?... Pictures (big ones, small ones) perhaps furniture or a blanket/throw on the bed that would look and 'smell' like home?? I feel so sorry for both of you, and I'm told sometime it is good to have their own things around them so the room is more familiar. You know he is in and out of reality, so don't be so terribly hard on you. Did the nurses say he cried when you are not there? Bless your heart, I can only imagine how you must feel.
Marygail, know that I am thinking about you and praying that you can somehow get some relief from your pain. I can't believe how the hurt of folks like you hurts me too. I wish I could do something more than give you a cyber-hug.(((((HUG))))). Joe
I just feel out in the woods alone. You all have your LO home or near you. Mine is in FL, I found out he was released from the hospital but no one will tell me where he was placed. Not at the nursing home he was taken from initiallly. I've done an internet search and called every nursing home in Palm Beach. I just got the ugliest, most cruel letter from my step daughter in L.A. She accusses me of having made her father into the 'patient' he is now. If I had been more loving, he wouldnt be sick. Says I've alienated ALL of them and they don't want to hear from me anymore. That's MY family. How's yours? I have been so emotionally upset that my therapist sent me to the ER where I spent most of yesterday, getting my meds straightened out to handle this level of stress. I'm worried sick for my husband. I was communicating just fine with him on the phone, then suddenly, he wasn't there anymore when I made my evening call. Yes, I've tried to speak to my lawyer, missed one call early yesterday (was on a guerney in the hospital). now it's the weekend and there's no one to help until Monday. His sister comes home on May 5 from a cruise and hopefully, she'll be kind enough to tell me where he is . This is as alone as I've felt since before I found my husband back in November. No friends, no familly. Just people to talk to at the shrink's office. I've never had to be alone before in all my adult years and THIS feels profoundly alone. I do not want to continue like this.
It has to be the fulll moon. Someone referred to the tides andthe fact that our bodies are 98% water--mostly saline. Also, the moon has a big effect on a woman's monthlies. Why wouldn't it have an effect on the rest of our bodies.
People used to think the full moon caused lunacy (luna/moon) I don't believe that's held in much respect any more, but it seems odd to me that there are so many feeling 'bad' this last week.
But, remember, next week will be better. (signed) Polly Anna :)
This has been a sad week here as well, for a number of reasons. Today at the library my eye caught on a book title: The Last Time I Was Me. Boy, that really hit home. I don’t even know what the book was about—the title was enough to stop me in my tracks. Felt like I could write a book on that, myself. And then there’s the sequel we could all write: The Last Time We Were “Us”.
Right know I WANT TO BE ALONE! EVERYONE IS GETTING ON MY NERVES. Dylan had a wicked meltdown last night and took off NAKED into the woods along the river behind our house, (can you picture this little 9 yr old butt running AWAY! Had to call 911, the sherriff found him, ambulance arrived along with his therapist, he was cover with cuts, scrapes and bruises. My mother is driving me nuts, likes to play oh woa is me when I have company, which I did, my best friend from high school was here visiting and with the change in routine and Dylans outburst, DH was completely out of sorts. Give me alone for a week or two PLEASE! (along with a big supply of scotch)
Just back from the head of pulmonology at Central Maine Medical Center. Mom has some sort to Interstitial Lung Disease! She has been on O2 since her 1st bout of Pneumonitis last Jan. He said her lungs are a disaster! She is having a 2nd contrast CT scan Thursday and a Broncoscopy on the 12th. It will takeone to two weeks to get biopsy results back as they have to be sent to a pathologist who knows about ILD. This means Boston or the Mayo clinic. I'm a wreck. Her pulmonary function tests came out like those of a lifetime heavy smoker.. She has never smoked.
susan soo sorry its constant stress these days! could it be time to think about placing your mom as well in the near future? she sounds like she will be having more needs than you will be able to manage. you have more on your plate than normal even here. divvi
The thing is, she is normally in great health. She is a very active 76. They said she would not survive this if she wasn't so healthy! Yes, I depend on her for help with Jim and Dylan. I just can't believe this. She would never qualify for Nursing Home care, but I do have a Visiting Nurse starting. I am asking for all the help I can get. The woman formally known as my sister, had this reaction, "oh I'm sure you'll be fine, Mom." Well, that's just flippin fine! I can handle it and they can all go fry!
Susan, you can live on very little lung function. Not that I'd wish it on your mother, but my mother lived for several good years with 25% lung function - the rest was completely destroyed by TB. That was before they had oxygen that you can cart around with you.
I won't say she'll be fine, and I know it's a terrible strain on you, don't get me wrong, but it may not be quite as bad as you fear. And look at it this way, if you go down to Boston, I'll get my handsome new CNA to come in and I'll come up to Boston and buy you (and Jim? and Dylan?) lunch!
He's just very cute. He must be about 20, skinny, loves animals and really enjoyed my husband. Trouble is, he didn't clean house (I didn't ask him, the first time) and the previous one, a woman that my husband did NOT like, DID clean house. I'm sure he'd do what I asked, though; I just want to give it a little time. The last one was fired: she wasn't showing up and wasn't letting people know, and that's a no-no in the CNA business!
We have been approved for 6 hrs of in home care a week. He/she will hopefully come MWF will clean (yeah, vacuuming) and take care of DH. This gives me time out of the house without worry. They (VA) will increase the time as needed.
Susan, how did you get that from the VA. My Dh is currently being cared for by the VA, Geriatric Psychiatry Dept. He kept firing all his doctors when they told him not to drive. Anyway, we've gotten a lot of help from the VA, High toilet seats, wheel chair for when I need one for him, etc, but I didn't know they could provide home health care.