If it was not for the few beautiful friends and family that understand how to love truly, and they love Dado and me, life would be so lonely.
Yesterday I thought I would get out of my isolation at home and go to the little park in our subdivision. There was a plant exchange and compost workshop. After the class, us rag tag bunch of neighbours had a potluck. I don't know any of them very well. They know who I am, and have heard of our situation, and tell me oh you are the mysterious Patty on Makai St!
Anyway, I was sitting with a few of them, and they asked what was up, did I want to share what was happening with Dado? I told it as briefly as I could, and how the last part of his time at home almost did ME in, let alone him. It did not take more than two minutes to see that they really did NOT want to know, and one of them even asked me, well what do you mean it almost killed you? Even after I explained the pnuemonia I had twice, the lack of sleep, the lack of help. And commenting things like, "Well I know someone that took care of their mate for 10 years", insinuating that I have failed.
I know that is just how people are, and I am not mad at any one. It is just a sign of how it is going to be. To be in social situations to not expect anyone to see your heart or care beyond daily life, small talk, and please don 't ask for help.
I even had one Maui friend I called the other day, when I told her some of Dado's Hawaiian cousins were coming to our island to visit him, she said, "Oh that is stupid he won't know who they are anyway" I was so shocked as she seemed to be supportive in the past. My reply was.." He does know, and he will love to see them. Also, it is for THEM, and ME, not just for Dado"
Ugh just sayin. THIS IS JUST HOW IT WILL BE FOR NOW ON. Really it should be a good thing that the ones that do care, are true blue. I mean, NO I do not want to talk about poor poor us and in fact hardly do anymore, and I try to be caring of their hurts, but, this AZ life is definitely going to change us forever, we will not be the same. Hopefully better, more mature, more loving, and more careful and choosy about who we want to be around.
Coco, Sadly, most will never have a clue what we are going through until they, themselves, are walking in our shoes. It is really sad that it has to come to that to get true understanding. None of us here would wish this on anyone! I only hope and pray that when newbies come along and suddenly find themselves walking our journey that we can be as loving and helpful as the "oldie goodies" on this site have been to us. As Joan states on the homepage...our issues are unique. I honestly don't think anyone can truly understand until they are in our shoes. I am sorry, that even among a group of "friends", you still feel so isolated. I understand....some of my loneliest moments are when I am in a crowd of people.
Oh Coco, I feel your frustration. I have seen so many of our "friends" evaporate into the air when they found out my DW had AD, it seems that they just can't handle anyone with dementia. I don't feel angry with them, because the only way for them to truly understand is for them to go through it, and I would never wish that fate on anybody else. Fortunately, I do have a few friends who do offer emotional support and I am no longer afraid to ask my children for help when needed. You are so right that this experience changes us. Our lives will never be the same,. I am a much more patient person than I was before and I know what I want for myself after this journey is finished and I will not compromise my values. Much love coming your way Coco!
Didn't the TV personality Dr Phil write a new book about how people have changed over the last few decades. Life Code or something like that. I heard him talking about it's a ME and only about ME society now and how you have to watch your back.
I've been off work for 3 months now and not one of my coworker have given me a call or any of hubbys 7 brothers and sisters. Only 3 friends have stayed in touch. The neighbours when they found out only one makes it a point to come and visit with him. It is really telling what our world is changing to. No longer neighbour helping neighbour.
Very tough on us but it does make me stronger. Thank goodness we have this site to come to and all the great people that post.
dementia world is very lonely not only for our spouses but ourselves as well as we try to blend into the real world. most of the time its like coco and amber say, not many true blue ones out there. if they are they are keepers. well I am going to say it cheval, I have one or two thoughout the years I think that should have to go thru this disease. the ones who are so very centered and lack of caring for any humans grief except their own. I say what goes round comes round. and that includes really uncaring family and friends. no I am not bitter now at this point, over and one with that, simply stating that during those so stressful times when we need a friend or a pat on the back or a bit of handholding those particular ones scattered like dust. we make amends and excuses for them but in our hearts I don't think we truly forgive their lack of caring. so be it. we find comfort now in those like here at joans or that may have gone thru something similar on the outside world who do get it.
Coco, I was talking to a so called dear friend of many years, telling her about Dh and some other news about my granddaughter that was happy news...she stopped me halfway and said, " I'm really not interested, I don't want to know" . She may as well have stuck a knife in my back. That hurt so much, I agonized about it for days till I had to tell her she hurt me, now she not talking to me making me feel like I'm the bad one. I tried ringing her, but I might as well be talking to myself on the phone, there's no reaction from her at the other end, nothing...
Coco, I hear you loud and clear. I would have told her to piss off. Truly I would have. There was a time I let pissants like this make me feel badly, like I was a failure. NO MORE! Through all of this I have become a fierce warrior. I DO believe in the whole "do no harm" theory , but I wont take any crap either.
I have let go of my deeper anger, because holding onto that anger only hurts me. But it doesn't take much triggering for me to remember the pain (and anger) of being abandoned. I am not a saint, and like divvi's honesty, I will admit there were a few people I wished small pox on! Not particularly proud of that, but it was a very real, raw reaction.
It isn't just Alzheimer's disease this happens with. It is any chronic illness, fatal or not. When I was diagnosed in 99 my friends rallied around me. You could not ask for more support and love than I got. When the brain surgery failed and I was told I could never work again, like dominos they all fell away. I think people can handle seeing a person ill or in pain for only a short period of time. Then when they find out there is no cure, they can't handle to witness it year after year.
It is true that one cannot possibly know the full extent of being a spousal caregiver unless they have lived it, but they could have some understanding if they wanted to. It doesn't take much imagination to try to put yourself in another's situation. What hurts so much is knowing they just don't give a damn. I can't blame the acquaintance for not sticking around, hell I wouldn't either. But good friends and FAMILY!? Come on! You expect more from your own blood.
Julia, that was just heartless of your "friend", I would lose her number real quick. There are truly wonderful people in this world, I suggest we all try to surround ourselves with a better class of people.
Coco, I feel your frustration yet even some really wonderful well meaning friends can say things that get under our skin. Tonight my DH and I were at my cousin's house for dinner...L is my 5th cousin and his wife is the sister to my GF who is also my dentist...anyway, the conversation was directed to my DH...my cousin's mother in law ( who is 95) was asking my DH how many brothers he has. He explained that he had B, D and R who died last year and also an older half brother S. The mother in law was having a difficult time getting it all straight and finally M said " Mama, S is a brother who was illigitimate"...and that made me come unglued ( being one who was born on the wrong side of the blanket myself) as I find it insulting to say that of anyone...I said S was not illigitimate to which M said, well he was born out of wedlock...So I fluffed up my feathers and said so was I and I find it insulting to use that term..No child is illigitmate...they broke no laws coming into this world.. Well is shut her up and her mother in law who was also with us for dinner agreed whole heartedly. And imagine how my DH felt when his older brother S was called illigitimate!
after all we have been through.....and the lack of support I've recieved from family and friends.....well they can all go and kiss my butt. I'm just so tired of thier bs.....fake people.
thanks all for your comments and comfort. For those of you that are new, and don't "know me", I want to mention that the lack of support and all we have talked about here, used to get to me ALOT MORE last year and before. I just got frustrated and wanted a bit of a whine here, as I know you all get it.
After going through the fire earlier this year, and coming out the other side in such a profound and surprising way, I feel much better about myself. And like Amber says, (even though I can forgive), they can just go kiss my butt. Fake and phony it must be awful to be in their minds. At least I KNOW, that I would give a helping hand, a listening ears, and sacrifice some of my time if it could take a load off an exhausted caregiver. I have learned to care for people so much more, no of course I make mistakes and am selfish sometimes, but nothing like so many selfish self serving narcissistic poo heads.
They can have their self centeredness, and will not be happy. I choose to lend a hand, and a smile... really, I mean it.... ( :
I find it hard to call those that you have mentioned FRIENDS,I have few REAL friends and many people I just want to forget too.Wish I could forgive them.
Seems like this is such a common happening. I have a group of women "friends" with whom I hiked with every week. I hiked less and less as DH required more of my time. I then I had to move out of town for 6 months to get care for DH. He died in Feb 2013. Just recently, after I had been "home" for a month or so, I shared a bit of my life with this group of friends. (My counselor thought it would be a good idea since there had been comments floating around about how unapproachable I was). I spent 5 minutes talking seriously about the past few years and the toll it took on me, then back to talking and joking. Not one of them emailed or called to acknowledge my sharing. My counselor said if I shared I would then know whether I was unapproachable or the friends not interested in much of anything. Well I found out.
hikergirl* I am so sorry you lost your husband. If you ever come to Hawaii, check me out and I will take you on some awesome hikes, and listen for hours and hours to you.
I was reflecting on the post Amber mentioned above, and this has really been on my heart, that people just don't seem to care like they used to. Another weird comment I got from someone the other day, when THEY ASKED about us, is "Well it happens" Now I have heard this one alot, it is almost like, "It is what it is" There is a time to say these things., but in my books not when you are relating about heartbreak of life. Next time when they say that, I will smear dog poo on them, and say, well, it happen....or is it s....t happens. Ooh nasty.
Julia I just cannot fathom a "friend" saying they don't want to hear it. Turn the tables, and when they are in deep hurt, I wonder, if they would like to tell someone. Mimi I would like to give "M" the dog poo treatment too.
For you that are new to the diagnosis and fear and all, I want to say, as awful as it is to be treated like this, and believe me in the beginning it was so so shocking and hurtful to me, I have learned to accept it, and the best part is to see that there are, a few, wonderful caring people. Others that have read my postings from the past couple of years have seen that I have given up on a "best" friendship of over 45 years, yes I still care and wish her well, but she is so toxic and uncaring and truly awful . It is such a relief to have been honest and let her go. Sometimes I cry when I remember all the things we have been through together, but sadly she will not see herself at any fault whatsoever, even though I reached out and tried so hard. She constantly told me things like, Well you can choose happiness, and , Oh others have it worse, as I was sick and no sleep and cleaning up urine and poo and missing my darling so bad.
Hang on and know that you can be loved, hopefully by ones you know, if not, by new people. If they knew what we deal with, they would be putting us on a pedestal and decorating it every day.
Perhaps we should start a thread about "What to say" or "snappy come-backs." I always remember the advice from Ann Landers or Dear Abby when someone asks a very personal, inappropriate question: "Why would you ever ask a question like that?" It throws it right back in their court.
What could we say to someone who says "It is what it is." "Why would you say something like that about this tragic situation?" "Is that how you would feel if it were you?"
If we had a thread going on this, it might prepare us to respond to these heartless cads.
Marche, having a snappy comeback might work, but I think that by our very nature as caregivers, we care too much to be able to be mean, even to those who are mean to us.
Coco, I believe you have said it above "I have learned to care for people so much more".
I look at it this way - our " friends" who have mean attitudes, or lack of compassion, or no interest in helping us, are ignorant, either by choice (they don't want to know, don't want to hear, have their head in the sand) or because they have no experience in dealing with dementia. I have chosen to ignore these people entirely, rather than stoop to their level by offering a mean retort. Besides, I don't think I have the energy!
This leaves more energy for supporting and care and compassion of the friends who are still there for me when I need them.
Coco, I would pay good money to see you smear dog poo and say sh*t happens! LOL!! :D
I think the worst comment is when someone will say "it could be worse". That bugged me to no end. I came back with "really? tell me what could be worse than losing YOUR husband inch by tortuous inch, year after excruciating year?"
Most of the time I got an instant apology for them being so callous. I think people just do not know what to say, so they say the first thing that pops in their head. Unfortunately they don't think and it is usually useless platitude. This only happened to me in the earlier stages when it wasn't evident to people how bad he really was. In the later stages there were none of these heartless comments, not one.
I am sorry that you had to experience this. This is a lonely disease for our spouses, but more lonely for us because we have the weight of caring all the responsibilities on our shoulders while our spouses are off in "alzheimers planet". Sure they may ask how things are, but they are not interested and could give a flying f... about how we are.
What is the very core of heartbreak is when our own family kicks us from the curb. With these so called "friends" as Nikki says they can "piss off". But with our own family this cuts to the innermost core of our being.
Glib sayings...it's nice to have a come-back, but in all reality I don't want to waste anymore of my valued time and energy on these people. They can f... off. Let's save our energy on the people who really do care...they are far and few between.
marche,I remember when Dear Abby wrote,"I'll forgive you for asking if you forgive me for not answering"I don't know that I've used thar as a come back myself but I love it.
All ignorant remarks are made by people who don't have a clue or the intelligence to make an appropriate response. I used to get it from Lloyd's family all the time. They all had their ideas about how I could be doing things better. I just told them that any time they thought they could do better, I would pack his little bag and they could come and get him and do it. No takers. Surprise! Surprise! Since Lloyd is gone, I have found myself to be extremely candid (that's putting it nicely). Some days I wonder if all the best in me is just gone since Lloyd brought out the best in me and he is gone. If people know me, they understand what is going on. If they don't, I don't really care what they think anyhow...which is why I spend the vast majority of my time in my bedroom watching TV with the door shut. I think I may have turned into an anti-social bitch. Booyah!
Linda Mc* your posts come off so strong and confident, and reading this about you being alone watching tv shows your softer side, and how sad you are missing Lloyd. You are in my thoughts and prayers today for healing and for your heart to slowly open to love, you deserve it we all do! I am so sad and sorry for you loss once again Linda...
Since H died just a little more than I year ago, I have not yet found my resting place. I admire so much, you, marilynin md, Emily, and others whose names are just not coming to mind at this moment. I admire your energy and your strength; neither of which I seem to have. And strength! talk about LFL...
I have more than often hesitated to post- apprehensive about what I had to say.
Then I remember, Charlotte, some months ago, saying (not to me), "you never know how anything you post may touch another".
So, with that wise advice in mind I am trying to post more rather than less (not without exceptions though!) in hope that someone may be helped or get something from what I have said.
Thanks, Coco. I wonder how long this healing process takes. I know I am entitled to feel the way I do, but really...how long. Ok, Abby, more than a year, huh? Well put - no resting place. I have not slept through more than a handful of nights since Lloyd died. Even got a body pillow and sprayed it with his cologne. I really don't want to discuss my feelings with a professional. They belong to me and I don't want to share with a stranger who learned a lot out of a book and possibly a little out of life.
Abby* yes you never know how much your presence can positively affect any one of us here. Thank you so much for posting that. Your comment "resting place", well, I hope and pray you find yours soon. Abby* I personally am in a temporary resting place, feel like I am "in between" Unless something drastically changes there is going to be a lot of personal pain and deep sadness sometime in the likely near future. Now, Dado is getting good care, he seems to be in his own personal place of quiet and transition, and I can sleep and smell the flowers.
Your journey was very tough my friend, at the end part. We all cried and suffered with you in our own ways, and your sharing here can help so many. I wish I could offer you some hope and inspiration and share a bit of the rest of soul I am having now. We care for you very much.