The other day, after our return from Pasadena, where my DH had been inducted into the John Muir Hall of Fame for Govt Service ( 33 years of military service) a friend came over to see how things went and to get her glasses which she forgot. (We kitty sit for each other). The drive was not hard on either of us as my bil did the driving. I am still in PT for my inured leg and hip muscles...and the 3 hour drive was not without some discomfort sitting that long and as it is my right leg, driving with that pressure is something I did not want to take on yet... Anyway, Maurina asked if we were going to LA for T'Gving and I said no we were't as DH said twice in the car and again at home he wanted to stay home. It is longer than 3 hours down to that area, there will be some 30 family and friends there and we would have to RON. Last year it took 5 hours to get home thanks to all the stores being open T'Giving day and then Back Fri....a 3 hour drive taking more than 5 hours!!! I said the bil said he would be willing to come up and drive down and back but DH just wants to stay home ( for once in more than 20 years and so do I). But Maurina starts to say with great enthusiasim, " But if bil wants to drive I think..." and before she could finish her comment I said with firmness " don't even go there" and got a surprised and somewhat shocked look from her... She is the same one who has a 92 year old mom with a little bit of memory loss, but not AD, who lives here in the same town as does her sister so family get togethers are not a problem...
What in bloody hell is it with these people who just cannot get it in their heads that we caregivers are just at the end of our limits with this kind of thing..that life is hard enough as it is with the never ending errands and doctor appointments, not to mention the normal routine household chores to be done????
Well that is my pre holiday rant...Thanks for letting me rant...
Because they just don't "get it". Unless they walk in our shoes, they don't get it and never will. All we end up doing is aggravating ourselves over it. And as you know, we don't need any more aggravation than we already have.
Mimi, Reminds me of the last Christmas before DH passed in Feb. At the time I need a hoyer lift to move him from bed to chair and back. Paying $40 to take him two miles to respite and another 40 to bring him home. BIL called and ask us to come to their annual Christmas party (that is the only time we see them and they liv less than 15miles) The last time they came to see DH was 9 years earlier for a surprise 70th B'day party. I explained that I needed a lift to move him and that I need to rent a handicap van to transport him. His response was, "You could just come for a little while so we can see you". How much clearer could I get than I needed a lift, and a handicap van at the cost of 20 a mile. I was supposed to pay $600 to go to a Christmas part for a little while just to see someone DH no longer knew and we hadn't seen in three years? I didn't think so.
Yes. We are/were blessed with many close and lifelong friends. They have fallen into three distinct groups. A few have stepped inside, stay close, and listen to all the gory details. The majority are dealing with their own comfort zones guarding against the intrusion of how terribly awful our situation is, and the rest are oblivious and clearly have no intention of allowing something not normal into their tight grip on the wheel.
It's easy to understand. What we were fit. Now things have changed. What we are doesn't fit.
I've learned that my friends aren't mean. I have moved to an unusual perch and both look different and see differently. From here I can see what couple's, friend's, and family relationships are and are not for them plus how they react to uncomfortable situations.
It's been another dimension of this nightmare watching everything 'I' thought was normal change on me and I went through a lot of pain over that because it was important to me. I'm most of the way through that. I can see that when they have completely impractical ideas about what we can all do together - I make the call about what will and won't be happening.
Things have truly changed. And I am both isolated and free. Isolated from what used to be normal and free to be in charge of what I'm going to do and not. I have a new phrase. "That's not happening."
Like the annual brunch at Holiday Inn. "Oh why not Wolf??" Because she eats with her fingers and gets half of it on her. I won't put her or me through that so that's not happening. "But I'm sure she'd enjoy it." Well, that would make you wrong. Next.
Until recently it hurt me that they were so unable to understand. I still feel that; but, I get it now. They're dorks and I'm not. To put that more kindly, they're dealing with it as best they can and this paltry effort is what that is. The real truth is that they didn't change. We did.
Wolf K is absolutely right! "friends" that you thought you had can't handle what is going on with us. But the good thing is you find out who you real friends are. The three catagories of friends is very interesting but true. I have one good friend that I can say anything to no matter what it is and she doesn't judge she just listens. She also believes me when I tell her how bad things are and doesn't try to tell me what to do.
Was sitting in a restaurant with some friends and mentioned that I was starting to look at alternate care for my DH. One woman immediately piped up with "He's not THAT bad". The rest of my friends in unison all said "YES HE IS!!!" I love them for standing up for me.
Summer before last DH went on Chantix (Rx to quit smoking). For the entire time his sister was here for her annual visit, she supplied him a few packs weeklu=y, "to tidy him through quitting." (Uh-huh.) He did quit for 6 onths and then started up a bit at a time--accepting ones offered by 'friends'. Some had been told he quit, but. . . must have forgot. 11 days ago he asked our PCP for 'quit smoking pills'. He finished his cigarettes and started the meds a week ago. Neighbors and his family have been told. The 'helpful' sister, who supplied him 3 packs a week the 7 weeks she was here this summer and sent him $45 cash in his Birthday Card (he brings in the mail), ha been told NOT to send any cash. He's on he meds to quit again. Suggested a couple other options.
Now I've returned to the "bossy B**" role and wait .
My mind knows others do not understand what our deal is, but why can't they understand "NO!" I learned that one years ago.
The thing is my friend is a really sweet person and is one of the few who does stick by me but she still does not get it..you can't " tell them what to do" " you cannot make them do..." and we can't fix them and I think what she tries to do, but maybe unaware of, is try to fix him or us so we are more normal...like they are...and no one is more aware of how not normal we are than I am when I see them go for long walks, go to concerts, go to the movies ( can you imagine going to the flicker box and have the LO ask questions through the whole show and not make everyone else around you upset?) They have no idea about the fatigue factor, the difficulites of transport as mentioned earlier..even my son in law tonight said something about getting my DH to Iceland next summer..good heavens he can hardly walk a block but they seem to think it is no problem for me to be a pack mule as well as everything else... When we say no I just wish we didn't get an argument about things from them.
Last week we took 3 of our grandkids to the local Veteran's Day parade. DH got upset with me for who knows what. After the parade we went to my daughter's house because I told my grandkids that we were going to make Christmas cards. Luckily my son-in-law was home so DH latched right on to him & complained to him. THen he proceeded to tell SIL about all sorts of events & places he's been....... pretty much he just rambled. After a while SIL came over to the table where we were making Christmas cards & he stood behind me & put his hands on my shoulders & squeezed & it was like he was saying to me "Now I understand what you go through". I almost cried because I knew that he understood.
Been there, done that....I finally have even gotten to the point that when someone asks me how I am doing, I say fine...and If they ask about my husband, I say as well as can be expected. I don't try to explain because after years of beating my head against the wall, I finally got it through my thick skull that you can not educate them because the human mind refuses to contemplate the absolute horror of this disease.
I refuse to explain my actions either, and I just accept their sympathy and interrupt them and change the subject if they DARE to tell me what I should be doing when they don't have a spouse with AD at stage 7e!!!!!!!
I say "How about those Cowboys" or "I think it is going to rain (or get cold, etc.) or ask about their grandkids....one was dumb enough to try to continue to tell me what I should do and I said "oh, my, I've got to run" and turned around and left!!!! I did it so that she didn't know what I was doing, but I wasn't going to stay and take it or argue with her either! <grin>
Mary, you are an inspiration. I hope that someday I'll be as understanding and as positive as you are. Right now I've got a long way to go before I get there.
Today we went to a meeting due to our campground membership park being sold. Turns out the guy just sold it to his sons who have joined up with a big corporation to offer more to members aka more money. Nothing changes with our membership and that is all I wanted to know.
They hire these men to hold meetings to explain what is going on to members. The first guy (age 59) when he came to speak with us totally understood and did not push it when I told him Art was dying so have no need nor can afford the upgrade. When I told him what he had, he was very nice, told us he was sorry, and changed the subject congratulating us for how long we had been married, etc. The other guy (age 50) proceeded to tell us him mom had some dementia and then telling us all these things we need to try. Telling us, almost forcing us, to agree to try this expensive program a guy he knows has where it is all about cleansing, then eating all natural foods - lots of veggies, fruits, antioxidant stuff,etc. I wanted to punch him in the mouth. He just did not hear me when I said there is not cure, no medicine to make it better, they don't even know what causes it; I have researched the web until I am tired of doing looking for the slightest hint of help. He just wouldn't listen but kept on - I could see tears welling up in Art's eyes- did all I could to stop him then got out of there. I know he wanted a sale even though they claim they are paid a wage and get no commission but it was their last day of meetings and still had a few of their allotted upgrades to sell.