I like this site because I get to say all the stuff that's been pent up inside for so long. Like saying what really ticks me off or how upset I get with DH. I can't say these things to anyone I know. For one thing, they wouldn't really care or they don't really want to hear it because it's a 'downer.'
So, I am so relaxed unloading and I know if you don't want to read it you'll delete it or go on to the next comment. Whatta neat place to be.
Where else can you go and have a thousand ears listening? now they may not all opinionate, but the ones that do, score high. plus when they say, 'i know what you mean', they arent just trying to appease you in that condescending 'tone'. when you say i am tired and had a bad day dealing with all the nasty issues of caregiving, someone else pats you on the back and job 'well done'...its a very small world...divvi
Mawzy, I feel exactly as you describe. Friends really don't want to hear the answer when they ask how he/she is doing..you can see the comfort level drop quickly, so we smile and lie. Family doesn't either, generally, because of denial issues, I think. Here, there is always someone who has been there or realizes they WILL be there. My attitude has improved a huge amount since joining. St. Joan has done us all such a service, I hope not at her own expense.
Ya' know what I like the best about the 'outside world?" When you weaken and tell someone what it's really like--losing your best friend, your confidant, someone to review a good book with, your lover....And they say with furrowed brow and the most compassionate of tones--"Oh, I know EXACTLY how you feel." (That's sarcasm you know). It makes me want to jump up and down. Then I hate myself for ever opening up to some one like that. They don't understand. They can't understand. BUT, the people here do. And, I really do thank you all. Especially, you, Joan. What a marvelous idea you had.
My favorite remark is from people who ought to visit my Alzy (just coined that name) and don't. "I just want to remember him the way he was." Oh that's right, I'd forgotten - it IS all about you. (More sarcasm).
I actually have one or two neighbors who get it. In their cases it was a brother or sister or a parent, but they went through the entire thing and they know just how bad it can get. But even they don't know about the spouse things.
This forum is unique. There truly is nothing that anyone can say here that is not accepted. Some of us would choose not to do what some others are doing, but we all know that all of us are doing the best we can. And all of us are trying to survive.
I hate it when he gets me so upset that I could scream and then keeps saying that he's sorry. I can't just shut it off with those two words. I need to be just left alone for awhile, like I'm doing right now.
I started this site because I was absolutely convinced that "spousal issues are unique", and most spouses were suffering in silence or were silenced by those who did not understand.
Let me share with you a couple of lines from an e-mail I received this morning from my old college roommate - she has a Ph.d in biochemistry (or something like that), and researches and deciphers the scientific stuff for me. This is very peceptive, and very few people "get it" like she did.
"I was speechless and crying by the time I finished your "sad blog" yesterday. It made me realize even more than before that your non-AD friends have no idea of the extent of the pain in your life."
It gets to the point when someone does get it you are in shock. You don't expect anyone to understand even some of it. I recognized that when one neighbor told me his mother had died of dementia. He knew it was fatal. That much the children and siblings do know once the journey is over. I literally stood looking at him and said, "you know..."
He is the one who started the ball rolling on "the project."
And then there is the therapist, who has had spousal caregivers before and dementia caregivers too. I think she gets all of it.
So there are a few people out there who understand parts of what is going on, but no one understands the whole.
A good friend Joan. I just feel so bad for all the people who don't have access to a site such as this. I ask myself, where would I be without the information found here? I am forever grateful.
I agree with all of you. This is a great site, and I feel so comfrortable telling it like it is. Thanks Joan! This is such a lonely life. Nobody stops by anymore. It's just me and the kids. I love it when I meet hubby's friends in public. They are full of guilt, but they still don't come by.
You know, lots of my husband's "former friends" don't come by either, even tho if they call, I tell them "come any time -- no restrictions"...We have a 'few' who come by, and when they do, my husband just lights up! He's a different person -- he still doesn't "talk" much, but i help to carry the coversation and he is just so glad to see an "old friend". If they only knew how much it would mean to him to have them come by...it goes back to how different people handle this disease differently...we, as care-givers, don't have the choice to not 'be here'...I guess if i had the choice, I'd still choose to stay...wait, I "DO" have a choice, and I do choose to stay ~ I cannot imagine not being here for him...and I am glad to be here most of the time to witness the small miracles and special moments of the days...the disease takes so much, but at the same time, I doubt we'd be spending all this time with our loved ones if we didn't have to. Life is just so busy for "normal" households...i really enjoy the "down time" we have alot. It is very 'comfortable', esp if my husb is having good moments of days.
Carolyn, My husband is also an apologizer and even tho I know he feels bad for being "a dummy" (his words, not mine) it is so hard when they are constantly by your side an all you do want is some time alone. I need it just to get important things done.
Oh, I hear you Alice and Carolyn. Mine is always saying he's sorry, he loves me, do I love him...Meanwhile he's at my back at all times until I feel like I'm being smothered!
It somehow makes me feel better to know I am not alone although I wouldn't wish this on anyone. Just nice to know someone understands this smothering completely!
Alice that is one of the big pluses on this site. You write about some really weird behavior that bothers you and discover that is a common symptom of the disease. Just knowing that makes the entire thing easier. It still bothers you and drives you mad, but it isn't something to worry about too. Lowers the anxiety level.
I have confided in my two sisters. one of them first mentioned that may be I should leave him next time he brings it up. She is worried about me. I explained to her that that isn't an option because who would help and take care of him in a couple of years when he will really need help. I explained to her that so many ex-spouses are taking care of their LO. She also told me that if she were to find out that his aggression has lead me to get hurt that she will be forced to do something about it. I tried to explain to her that there are other options rather "than doing something about it." I can understand her being concerned about me but that would not be the way I would want DH handled. We really do need to be careful how much we divulge to our families. We want to remain in control. However, it also limits my "shoulders" to lean on. My other sister, is a little more understanding of the situation. She backs my decision to stay with DH and understands the issues. She also understands where my other sister is coming-from.
One day I was talking to a nurse here at work and it was a bad day for me. She said "everything will be all right". I wanted to shake her and shout at her that "no, everytning will not be all right". Afterwards, I was surprised at how much those ignorant words bothered me. Here was a person in the medical profession that had no clue. I did understand that she was trying to be soothing but her unfortunate choice of words just did not help at all.
therrja, it is close to the same feeling we get when people say "I understand" because you know they don't! Only those of us in our situation understand!!!!
But we know that everything will NOT be all right. Maybe she was trying to comfort you, but she said it all wrong!
In a weak moment I told my very good friend that I took showers w/DH to make sure he got 'squeeky clean.' It's kind of like giving a big 5-year old a nice warm bath before bed. I was completely blown away when she got kind a wicked grin on her face and said "Oooh. That sound like a whole lot of fun to me!....and then what happened?"
It was such an inappropriate response I felt like smacking her a good one. I didn't know what to say so I just shrugged and had this stupid half-smile on my face and said "catch you later...." and I left. I was just sick that she would think I would mean something like that.
I wanted to cry but I didn't. So, I'm telling you because I know you will understand and, for that, I thank you.
Mawzy it really is like giving a 5 year old a bath. But so many out there don't "get it". And I'm beginning to wonder why.
There are TV shows like The Forgetting. There have been a whole bunch of famous people who either went public themselves, or who's families did.
My daughter tells me that ALL of her friends have a parent, grandparent, aunt or uncle with dementia. They all get it. Rod's mother used to come to the big Bar-B-Ques (and still did at least once this year). We went up until last summer so they saw my husband in his earlier stages too. The only reason we still don't go is that we can't manage the trip anymore. He doesn't drive and I haven't done highways for so long I can't manage the trip. Etc. Etc.
So how come we keep coming up on people who don't "get it."
i know what you mean about no visitors. my husbands friends never come to see him,in fact it has been quiet awhile since any have called. it's like he is just not on this earth anymore to them. i know alot of people say they want to remember them the way they were,but we have a longer journey to go yet and i do feel angry sometimes. dh is not up to company sometimes,but they could call to make sure it was okay to visit. i just don't think i should call them and update them,when they should be the ones calling. i think it just makes them feel bad and they just don't want to see him,but he does need some diversions since i can't even get him to go to the grocery with me. he doesn't like to go anywhere. some people that do ask how he is doing, will say," well it will get alot worse". like i need to hear that and don't know that already,or tell me some symptoms someone they know or heard of had. my sil told me" sometimes they really get mean". who is "they"? he is not an alien or something subhuman. it seems like most people just don't know what to say. they are either too optimistic or too pesimistic and it just bothers you to hear what comes out of some peoples mouths. most people mean well and some people just like to run their mouth,and it just makes you feel worse. i love this site and i am so thankful to be able to speak my piece and no one condems you for it. i just want to thank you all. god bless you. we may have to tell each other the truth about things,but at least we know what we are talking about. jav
I wholeheartedly agree with all the above. i just want to scream in their face, when they ask such a stereotype question, 'how is he doing these days?" do they REALLY care or is it the way society says be polite? i doubt they care, i dont even think my own family is concerned anymore nor his family. all everyone is really thinking is i hope its over soon so everyone can move on and not have to feel concerned or make excuses why we dont visit or call. everyone sounds contrite and superficial to me now= so the only ones i can say honesty how things are is here. just you guys really know how 'it is' everyday and how 'he is'..(or she for you guys!) divvi
I guess I'm lucky. By now the people in my community know what is going on and are comfortable asking how my husband is doing (not well). I made it a point to tell them-one by one how much it means to be to be asked. My husband is still a person and deserves to be remembered.
jav, if you think you're husband would enjoy company, CALL THEM. Sure, they should be the ones calling, but if they aren't, then you go ahead and do it. Not to "update" them, but to tell them very frankly that your husband is lonely and needs someone to show they care about him. Give them a few tips on what to do, how to behave.
Everyone says we caregivers must learn to ask for help, and this is certainly asking for help.
When my husband was first placed, I did a lot of encouraging and calling and inviting people to visit. I've given up. If they go, they go. If not, there is nothing I can do about it. I'm there every day I don't work, and at least one evening after work. Our daughter visits once a week. One really good friend visits a couple times a month. Other than hospice (who are wonderful and visit 3 times a week) that's it.
My DH's sister was within 130 miles of us a couple of days ago. She lives 1000 miles or so away. She called to see how things were going and said they wouldn't be making the effort to come by since her brother probably wouldn't remember her anyway. I have no idea why she thought that, but why would I even want her to come with that attitude? This afternoon my DH was looking for me. "I'm right here" I said. When he still didn't think I was me I gave him a kiss. What a funny look on his face - why is that lady kissing him while he is looking for his wife? (I am so glad to expect these kinds of things so it doesn't upset me and I TRY to help him figure out I'm me!)