I've had it that I had to leave a job I love. I've had it that I can't pay my mortgage. I've had that I'm 56 years old and have no life. I've had it that I'm so lonley. I've had it that he can't put pants on without help but knows where I hid the candy. I've had it with Depends. I've had it with sleepless nights. I've had it with 24 hours a day of TV. I've had it that he tells me I look like my 86 year old mother.I've had it that my dog pees on the same spot on the carpet everyday. I've had it with his food addiction. I've had it that I hate my present and have no future. I've had it that the man I love is gone. I've had it that sometimes I feel dizzy. I've had it with cold weather. I've had it with his eating paper. I've had it with Dr.s and hospitals. I've had it that everyone thinks I'm so strong. I hate that I've had it. cs
I am sorry you are going through this. Isn't it funny how we hate to look like our mothers. If someone says I look like my grandmother, I don't mind. My DH has the food addiction, too. He watch TV all day, but sleeps most of the time.
I don't blame you one single bit. As a matter of fact, I agree with everything you said, and I'll bet there are many more spousal caregivers out there who feel the same as you. That's why this website is here - so we know we are not alone.
It is especially hard on the younger ones, and at 56, I consider you too young for this. Not that anyone older should go through this either. My downspiral into Alzheimer's Hell began when I was about 55. I will be 61 this year, so I absolutely know how you feel.
I am so glad I made this place, so you and others can come here and scream, vent, and be understood. Me too - I do a lot of screaming and venting here.
ditto to all of the above, and " I hate all that has to do with poop/pee patrol"!! at it again today and just finished cleaning dozens of feet of white carpet he walked thru AGAIN--i am on my second carpet steam cleaner..sigh...
i hear you LOUD AND CLEAR..and yes i am yelling..today is just one of those days! divvi
OH CS, How I feel your pain, I am 53, I've only had 5 1/2 yrs with DH, most of them watching him change from the fun loving, laidback, articulate, compassionate, spontanious man, lover, friend, father, grandfather, to an angry, withdrawn, shadow of himself. I hate that we've been cheated out of the beautiful love that we had. I hate that we have no future to look forward to. We'll have no retirement trips across the country in our dream motorhome. We'll never drive the countryside of Italy and Scotland as we did on our honeymoon in Ireland. We'll never grow old in the rockers on our front porch. There will be no more camping trips, tenting and all that goes with it, will be too much. Life is not fair. Let's hope Heaven is the reward that it's said to be.
I'm 53 and I feel your pain CS. I hate that our dreams are shattered and my 'soul mate' is no longer that. I hate that 90% of the conversations we have are around garbage. I really hate it that he doesn't even have a clue and will never have it, yet I have to bite my tongue because he 'doesn't know any better'.
Oh how I hear you, cs. I hate that I am literally alone even though he is here. I hate that I now have to help him shower and dress and shave. I hate that my arms are sore and my knees hurt, my back aches because I have to do everything I used to do AND everything he used to do. No conversations, no travel, no fun, no sleep, no loving arms and warm kisses....no nothing! Just work..... I am truly tired and worn out. I don't know how long I can endure....M
I am so tired of the unknown with this disease and I can only plan to do tomorrow what I am doing today. Husband in last stages 61 yrs old on hospice. I am only 53. I am tired of people saying call me if you need me, when they really do not mean it or they would have already called and asked what they could do to help.
I am tired of everything all of you have mentioned--AND I am tired of pretending everything is all right and nothing has changed--this in front of my DH who has no clue how serious this is. I am tired of the emotional roller-coaster ride I have been on for the last 3 yrs. I try so hard to focus on the present, but the future scares the hell out of me. This is the saddest thing I have ever been through in my life--losing my best friend and lover. No one can understand until it happens to her/him. My husband is 60, and I will be 57 shortly.
I am so weary of constantly being on guard, watching to avoid a crisis, trying to stay one step ahead. I am tired of answering the same question six times in thirty minutes. And I am tired of always being the planner, the coordinator, the picker-upper, the cook, the table setter, the dishwasher loader, the laundress, the prescription refill manager, finder (maybe) of lost keys, tools and on and on... I try really hard to "stay in the day" but it is difficult when you also have to prepare for the future. My DH also has no clue about what is really happening, just thinks his memory is not what it once was. People who say you should be able to grieve together are so in the dark. Grieving by oneself is the order of the day.
Wow, we are all on the same boat..I could have written all of the above. Last night G told me that he will NEVER not know who I am..he really has no clue what is ahead... only knows that now is dreadful. I'm trying hard to go with the "now" is the important time, but the sleepless nights worrying about the $$$ are killing me.
Oh yes I can relate i am getting tired of it all it feels that I am on a roller coaster and I want to get the H off.I will be 55 in July and my husband is 68 we have been married 16 years,and bye the end of summer he will not be living here.Because I mentally have had enough he has had it for almost 6 yrs but he is getting alot worse,I also have to repeat and he forgets everything.He watches tv all day long eats alot of sweets and thats about it he is a stranger to me I will always love him but I also have a life ti live.
I've stopped trying to hide my sadness from Jim. He sees me crying and will hug me. I tell him I love him, sometimes he smiles, sometimes he says it back for me. I can't hold it in. When I'm happy, I'm happy, when I'm sad, I'm sad. I can no longer hold it in.
i understand where all of you are coming from, i had it , everybit of it, it didn`t go away yet even when he is in the nursing home i still have to go and see him, listen to him get mad at me, cry cause he wants to come home, listen to the quiet in the home, walk into his room and see him not there, does the i had it ever go away, i hated it when he was here and i hate it now that he is gone, someone please take the i had it away
My God, how much we share in emotions. We should write the" right "book. The ones out there don'tcompare to what I read here. Everyone above shares my sentament completely. I always said I could not let anyone else care for my hubby. THought no one could do it like I would. Well, I've come a long way baby!! 8 years later and his being totally unknowing of me, I am ready to let GO!! Susanhere you have it exactly right. Lots of hugs and kisses and who is bringing the margaritas????
Geeeeeeez, I, too, can TOTALLY relate to all of the above...mirror image. I'm 53 and hubby is 52...this has been one long road...and I am totally exhausted. I so look forward to the day...even just one day that I do not think of AD. That for 24 hrs. I actually do not have that word enter my brain. That will be my day to celebrate!
My dear sweet CS- I /we do understand each and everything you are going through- yes, the public , family, friends, do not know, as they see our spouses only for a short time. You have summed up exactly how I feel. My biggest hugs go out to you and everyone else! I am 58, my spouse is 62. I just showered dressed, shaved, my 62 year old child and put him on the Adult Day-Care bus. The grieving and heartache is an all day thing, as I have lost my love, I am basically alone, nothing is enjoyable with him now, as it is so hard going places with him, that I end up surpressing my screaming and crying. The sweatpants, the eating with his fingers, the sipper cups, the "salad" speech, sometimes is unbearable to watch. I had one family member say, "Oh, I thought Alzheimers was just a small memory problem." I too have had to cut my work hours, as the 2 hours getting him fed and ready for Day-Care, Mon-Fri is trying. My heart goes out to you, as we all know how you feel- no life, and when this ends, will we be too old, for a new life?? Bless you today and my hugs and thoughts go out to you!!
I am so touched by each and everyone of you who responed to my temper tantrum yesterday. I was starting to feel guility about my post and then I read your replies. We have every right to feel angry,hurt ,overburdened,unloved, stressed etc. BUT...THE JOURNEY WILL END AND WE WILL ALL LAND ON OUR FEET. Of that I am sure. I am ready to open up and post my e-mail address. I am here for anyone of you at any time. I love you guys. cs
Never ever feel guilty for having a tantrum....tantrums are good for your soul..(miserable for everyone else but great for you. This caregiving goes beyond any human efforts, and I wish I could hire a professional caregiver......but there are none who can do the job as well as you. Yes the sun will come out tomorrow, bet ur bottom dollar, blah blah...I just hope I don't get a sunburn............... Hang in there..you are probably coping better than I am, and doing twice the job that I am..... I am the worse caregiver on this website, so I know when someone is doing the right thing......hugs
You are not the worst caregiver on this site. None of us is the worst. We all try the very best we can. Some days we stink at the job, and other days we do okay. It's a constant learning process. And I am soooooo tired of all this learning. We'll all be brilliant by the time our journey is over.
Yes we all try the very best we can, and we truly do love our spouses and that is why we do what we do for them...we need to keep reminding each other of that fact, and to block out the ignorance that seems to run rampant out there with people who just don't get it, and have no idea how difficult being a caregiver really is. I think this post is much needed, cs--thanks!
It is amazing that we all have the same feelings, the ALZ patients all go through the same stages more or less....and the caregiviers all have the same heartaches. My heart goes out , as I have said before, to all you young ones, so many of you are the ages of my children. I pray that you all will find peace and happiness again, when this journey is over.
I may be joining the Pee Patrol! DH had another accident this morning again we/I was lucky-this time it didn't even go to the top sheet so I don't know if he is just dribbling. I am going to my womens's circle meeting this morning so I will stop at Walgrreens and get some Depends or whatever.
In al the time I've been a Caregiver, I think the most challenging part is trying to stay ahead of DH in whatever he's doing because no matter how well I do, he always catches me flat-footed when he ricochets into something else.. There's just no way to stay ahead of that.
cs....only read your first comment that startedd this thread. Can't see beyond bleary, tear swollen blackened eyes today. I understand how you are feeling. Condolences all around seem to be fitting. This can only get better as I think I'm getting pretty near the bottom...can bearly see any light from above. Wonder how much longer I can be here, really. Thought I was so strong and wanted to be strong for others. Apparently, it doesn't matter. Who cares? I'm nothing in the big picture of things, really. so tired
stunt girl--youe have been through a lot. Hiowever, these latest blasts are repeats--not to fold up over. The slams and shunning from the kids are not new--just a rerun. As for the nursing home's latest crap--follow your attorney's advice and keep your lip zipped. It is tiring and disgusting to have to keep dealing with the stuff on your plate. You've survived all their previous versions. Enjoy you visit with your folks and start looking at what you want for yourself when this ends, because it will. You know that.
Hold on stunt girl, we're all gonna make it out of this nightmare alive and well. Gotta keep the faith. Don't let it get you down. You've overcome too much to throw in the towel now!
Add one more yes to all of the above ... and another reason why THIS site is a lifesaver on so many days. Just knowing that others are going through the same things, having the same thoughts ... means an awful lot on many days!
What a great thread you started ((cs)) I have felt everything stated above at one time or another... now I think what I am tired of the most is idiots. I know that sounds harsh, but its the truth! I wonder how these people managed to live this long being so stupid lol. STILL there are those who STILL will not admit what is happening to Lynn. They STILL think he knows them.... hello! he doesn't even know his own name anymore people! Of course, if they would get off their selfish butts and go visit him they could see that for themselves!!! Yeah, that is another thing that ticks me off.
Hmm this feels good!! Ok, I have also HAD it with people who do not visit him giving me advice on what he needs.
"YOU should do puzzles with him, try to keep his brain active" Are you frigging serious? He has trouble knowing how to sip through a straw!! but sure, lets do the daily crossword puzzle! dumb ass!
"he just needs some physical therapy" ummmm NOOOO! Physical therapy is not going to stop Alzheimer's from destroying his brain!!! It is not going to make him walk and strong again.
"maybe he needs more sun, you should take him outside more often" ....really? and you should stick your head where the sun don't shine!!!
This thread is interesting. It has brought a lot of my resentments, hurts and anger to the surface. It is very nice to know that others feel the same way about things as I do - not so lonely in all of that. I think I was so busy taking care of him and dealing with his needs that I kind of repressed my emotions and am just now beginning to deal with them. Does that make this post tramatic stress syndrome (sp?) ??????
hmmm I don't know if it would classify as PTSD.....it is certainly traumatic enough though! I am still repressing my emotions. I think they would kill me if I allowed myself to feel them full force. It is a self preservation technique I think.
Nikki, I love your post of 3 hours ago. Now tell us what you really think. (-: It's truly amazing what comes out of some peoples' mouths. I suppose they're well-meaning . . . maybe. (((hugs)))
I began reading these comments with the first one from cs. When I read it, I cried. I cried because I feel all the things she described at one time or another, as well as some of the things the rest of you posted. You people are the best. Your strength helps me to find mine.
Oh Nikki, You hit my feelings exactly. Just today some neighbors dropped by, have not been in our home but twice in 10 years, and oh YES, my husband did know them, they could tell because he squeeze their hand when they went to shake hands with him,. NO0000000000 I said he does not know you and then would you believe it, they wanted to argue that yes he did, that sometimes you would not realize all they know. Just let them try to interact with him one whole day and then see how much they think he knows.
I am also tired of those who say to him, you need to be outside more, you need to do this for him and this and this and this. They have not a clue, they have told me I need to get Physical therapy for him, I have asked the Doctor and he says Noooooooooo would do no good but these people who know all about Alzheimer feel that I should. Never one time do they stop and ask how I am feeling or if they can help do all these things they are telling me I need to do.
There, I have said it. Nikkie you feel the same way I do.
I hate it when some one who sees him once a week or once a month says "he looks like he is doing well" Sometimes it is not even worth trying to explain.....
I know that I've said above that I feel some of the things others are feeling, but we still must remember that our spouses are sick. They can't help what they're doing, no matter how much we wish they could and no matter how much we think they can. They can't. They are our husbands, our wives, and we must try, no matter how difficult it might be, to treat them with respect. Now, that doesn't mean we don't have a right to how WE feel. That's why we come here, to let those feelings out, but we must remember, they have feelings, too.
Bev, I couldn't agree more. There was a time when Lynn would have risked his life to save me. I can't save him, but I can advocate for him and protect him. Placing Lynn was the single hardest thing I have ever done! but it was also the best thing I could have done for him. Not for me, but for him. That is what this is all about now, what is best for him. ♥
Jane, I am shaking my head in disbelief, but I know you are telling the truth!!
Sherizeee, I agree. When it is someone not very close to us and they something this absurd I just smile and nod. I don't have the energy any more! lol
My sister who is suffering from what I believe is MCI vs aMCI because she remembers later. This is a result of the many TIA's and stroke she had. This evening I shared with her that hb forgot where he was going this morning. Her comment was: he wasn't awake yet. No he forgot. No he wasn't awake yet. No he forgot and couldn't remember. Her final comment: whatever you want to believe.
Sometimes it's not worth correcting people. A case in point - my dad had dementia and was in a nursing home for 6 years. I don't remember for sure, but I think 5 of his 13 brothers and sisters were still alive at that time. Only one of my aunts ever went to visit him; she went once a week. On her 90th birthday she insisted that my Uncle Bob and Uncle Bill go with her. When they walked in the room, my dad, who didn't know anyone, said, "Hi, Bob." Uncle Bob was thrilled that Dad knew him, even though he'd been told Dad didn't know anyone. Dad had the brother named Bob, one of his sisters was married to another Bob, and my husband is Bob, so he had a chance of being right if he called someone that. Furthermore, he often called my sister Bob, me Bob, and the nurses Bob. But he knew Uncle Bob! Sure he did . . .
Great discussion!! I don't need to add anything as it is all right here...thanks to you all for reading my mind. My Doc said I need to rid myself of negative feelings...didn't say how to manage that, however! GRRRRRRR
One way, Kathi, is to build a wall around your feelings...and understand that what anyone else thinks really doesn't matter. That some of these people don't know what to say, don't understand AD and only know what they see on TV, so what comes out of their mouth with good intentions almost gets them knocked down!!! You have to learn to let it go in one ear and out the other.
I used to get so mad at the speakers on TV: work puzzles, eat veggies, walk, get plenty of fresh air and exercise - as if they could stop AD!!!
No one knows what causes it, so nothing they think of can cure it either!!!!!!! There is only ONE good coming from the publicity - and that is that the word ALZHEIMER'S is being heard.
I used to think "more and more people are getting AD every day - so why doesn't the number 5 million go up?" And it hit me...the older ones have died.... with the baby boomers up and coming, it will probably increase, however!
I hate all the above too and the suggestions by others we should sell our house ( paid for I might add) and move to where family live..in hot ol snake infested Texas ( no offense meant to Texans here but I just don't like it there).
Mary, If all those things that were suggested we do to put off Alzheimer's worked, how do they explain so many highly intelligent people getting dementia? These people got all their Degrees, exercised by walking from building to building on campus or work, read a lot, some of whom keep going to school to expand their knowledge (like my husband, who was working on his Ph.D. until he gave up when all he had to do was write his thesis) etc.? (I now know it was because he was unable to do it). How is it that it seems as though more and more people like this are getting Alzheimer's, FTD, Lewy Body, etc.? There are no explanations for this. I now worry about getting it myself.
Bev, Today I was talking with someone about this too. Here are the wizards of smart telling us those who have lower education, don't read etc are more likely to get this miserable disease than those who are highly educated, blab quack quack...well my mom was a surgical supervisor and her brother was CEO of Sunkist and had a law degree as well..so if these people are not smart enough then hells bells we are all doomed I say doomed!