I just went outside to pray as I do most every night and during my prayers I got mad a God for what has happened to my husband. He is only 60 years old and his life (MY life) as we knew it has been taken away. We retired early too have a good time while we were still young. I can't have fun anymore because I have to take care of him to make sure he takes his pills, answer his questions over and over again, make sure he goes to his appointments, etc. You guys know the drill. We have been robbed of our lives as we knew it. It isn't fair that someone so vibrant, kind and loving has turned into someone who has to be taken care of. I am mad because there are so many people out there who don't deserve the life they have and yet continue to have full control of their senses. We have a neighbor who is 85, has been arrested numerous times for indecent exposure, lives in a rattrap house alone, and yet he lives. We have child molesters, rapists, druggies...they are fine....they live with their wits. My husband does not deserve to have this fricking disease and live like a child. I do not deserve to live as a caretake of my soul mate. Why? Why? WHY????
I know how you feel..I think many of us in these recent days are feeling this way too. You pretty well described my situation. How similar most of our stories are.
I too find it difficult not to be jealous of those I see going about having a nice life ( at least this is the way it looks from the outside looking in on them). I too get angry at the whole thing.
I guess it is ok to get mad at God. He is a big boy, with large shoulders and I think He can take it. I just wish finding the answers to our problems would not be so difficult.
sheila1951, I understand how you feel. My dh and I are 55. He was diagnosed at 53. As you said, we know the drill. Even tho it has been a few years since diagnosis, the anger and hurt and all the bad feelings are still here. I am doing better with them but not because things are getting easier. It is because I am getting a better handle on the whole idea. Not that I like it or know why it is happening to us and others like us, but because I am leaning on my faith to help me. That is all I have. I believe that in this disease there is a time and a season for more understanding and acceptance, if you understand what I am saying. I will never accept this as to why, but as to accepting what I can't change, I am able to work on this. I will pray for you as I also need plenty of prayer. I hope you have a great day tomorrow and just take it one minute at a time...... God is with you and so are all of us........
Yeah...I know what you mean, but when I really observe what other people are dealing with...yes, some seem to have a pretty smooth ride, but the things we see--people caring for family members with serious handicaps, families in impossible financial situations, and the way lives can be for huge populations if you think globally--all that's only scratching the surface of how rough this human gig can be.
I guess I tend not to think "why me," because when I look around, what I really think is "why not me?"
Not pretending there's a "bright side" that's as bright as the life we were planning on, because that was a jewel, and it's been ground to powder. No question about that. Can't dwell on it though. Not healthy. Sometimes it helps to just notice little teeny tiny things that are pleasing and uplifting...like your nice cup of tea, or your kitty cat, or the sunshine. (well...it helps a little bit.)
Do I "deserve" this? I don't know. Probably not in particular, but in general I don't notice the world working on that kind of a tit for tat basis. There might, on the other hand, be some kind of purpose or transcendental meaning in the energy we're contributing to the world from our seemingly less-than-ideal stations. I sort of like to think so.
I'm not saying don't rant. Sometimes you just have to.
sheila--a few yrs ago I could have written your post, word for word. Being "robbed of our lives" and the unfairness of it at ages 60 (dh) and 56 (me) was hard to swallow. On top of that, my husband had already suffered as a teenager seeing his Dad fall ill with EOAD. I never found the answer to "WHY"? We certainly never did anything to deserve it, and I agree with Emily, that's not the way the world works. It's just random, I think, and we were unlucky. Based on my experience, you will get through the emotional trauma (there are no shortcuts) and come to terms with it. But there is a lot of pain first.
Ditto. Ditto. Ditto. Except the "why me" part. I agree with Emily on that one. "Why not me?" Everyone has something, and this is what we were given to deal with. But I HATE IT.
emily, you wrote what I was thinking but couldn’t put into words. I absolutely HATE what is happening to us, but I have had such a blessed life that this is just a bump in the road. I hope that what I am about to say doesn’t offend anyone, but my personal feeling is that “this life” isn’t about THIS life, it’s about eternal life & no matter what happens to me in this life, in heaven there will be no sickness. Even before this happened in my life I believed that heaven is my true home. So whatever happens to me here is just temporary & I can deal with it knowing that my heavenly home awaits me. Just sayin'!
I agree with what you wrote. When my husband was diagnosed with bladder cancer in 2004, I thought that was the worst that could happen. Then in 2008 the diagnosis of FTD made me quite angry with God. After finally accepting what is going on, I have stopped being angry with God. I'm just angry at the disease and what it has taken away from us....he is now 61 and I'm 52 and we will never enjoy retirement!
I have read all these posts and agree with everyone, I am mad at God sometimes but always feel Ive been very blessedin this life. I used to say "too blessed to be stressed", but dont use that much anymore, because I am stressed a lot. Not just this situation Im in with my DH, I have a grandson with Down Syndrome and insulin dependent diabetes, my 85 yr old mother is going weaker by the day, lives 1 hour away. I have several health problems of my own that are very troublesome. I too feel (my happy retirement) is not within reach anymore. I am trusting in God to get me through this and hopefully with me smiling. I predict i will have a better outlook when the sun starts shining every day, it has been a very dreary winter here! God Bless You All!!
I am sure that we all had plans that have been ruined by this blight on mankind. It does not seem to care who it attacks, it just seems more unjust to take the prime years from those who will never be able to enjoy them again. The prime years are when you have the health and funds to do some things that you have post poned most of your life. I am willing to accept that you have to go out of this world one way or the other, and we have no control of that. It jus seems so unfair when it is early. The moral of the story is Eat, Drink and be Merry for you never know when you will be hit by a bolt of lightning, at least it is Party time in New Orleans and I wish I was there getting loaded rather than here making sure DW is able to see Oprah at 4:00pm
I certainly hope I didn't offend anyone with my rant last night. I normally keep everything inside, play Miss Mary Sunshine and try to be positive about everything around me. That is the side I show to my family, friends and neighbors. They don't know what boils inside me on a daily basis. It is easier to keep it all in than to let it out and have a meltdown. I know I have had a wonderful life up until this crap hit. I cherish every child and grandchild we have and find joy in them all. I just wish Tom could enjoy them like he used to. I accept what is going on but that doesn't mean that I like it.
Sheila, maybe it is time to quit being Little Mary Sunshine and let people know you are hurting....let them know you could use some help.....a friend to talk to. People don't know how things are unless we tell them.
There comes a time when even the strongest have to cry "uncle". There is no shame in asking for help....the shame comes in letting yourself become a victim, too.
sheila, NO NO NO you did not offend anyone. Whenever anyone starts a thread like this it is like someone giving us permission to let it all out. I would imagine that a lot of us are like you in that we try to show a positive attitude to our friends & relatives. (I know I do). So when we get the chance to let it all out we take it. The best part is we are letting it out to people who UNDERSTAND.
I DID spend some time this afternoon talking to a good friend. Her hubby plays golf with Tom....he's about the only one left that will call him to go play. They are great friends and it was good to be able to talk for awhile. In fact it was HER hubby who cornered me over a beer several years ago to let me know that HE saw the difference in Tom and helped me get started on testing. That was the very first time anyone had ever said anything to me and (altho I KNEW) it broke my heart.
Thank you all once again for listening to me and for being so caring. Thank you for being here for me. I love you.
Please, never feel sorry for how you feel! I have felt the same way and I am sure that at one time or another all of us have felt the same way. We wouldn't be normal if we didn't feel a little angry at the turn of events that we have to live with. I can't even say that we eventually get use to it because I don't think that is possible. Somehow we always live through it though. This support group is a good place to go to express all of your emotions because I (for instance) only have one friend that I can talk to about what I am going through. Everyone else calls me a cry baby and a drama queen, Do you believe that!!!!! I'll give them drama!!!! People just don't get it!!!!
Actually I just had a rant in an email to someone and now I'm having a cigarette afterwards and feel more relaxed.
Look, I'll be little mary sunshine or little miss sunshine or whatever her name is if that will help. I'm not wearing the heels though. Or the bonnet. Come to think of it, put me down for the Troll part. Slouching through the day mumbling to himself knuckles dragging on the ground.
We all know about boil overs and meltdowns. The thing is, it really is important to get it out once in a while. Or at least some of it.
Anyone calling Alzheimer's victims drama queens is shallow. Sorry. I wish I could say not caring anymore what your friends are saying is better. In some ways it is but in other ways it isn't. They still get under my skin but I'm numb to it. If you get one or even two good friends that stick by you and stay inside the story with you then you are a lucky person. I wish that wasn't true too - but it usually is.
Here's a word from the past. Enthusiastic. Remember that feeling??
Hang in there everybody. Almost everybody makes it through this and with a little help we will too.
I think you mean Polyanna, Wolf. But you do make a better troll. The bottom line is what you said--we all know about boil overs and meltdowns. They are part of the war we are in. They can be therapeutic. Being able to come here and unload, where friends truly understand, is one of the blessings that will help us make it through. We are not flying solo.
while i try not to be vindictive only when 'necessary' i think this is a good opportunity! ha. sometimes dont you just want to be a tad mean and payback time??? comes to mind' what goes round comes round'... :)
The worst moment of alienation for me was at new years this year. I took my DW to the same 3 couples where we have been spending 3-4 weekends together every year since we were 25 (that's 35 years). We watched their children grow up and are virtual aunts and uncles.
This last time in the morning where I was talking about our situation one of the women literally interrupted and said, "Wolf, you talk about this a LOT." making a face the way someone might eating an anchovie sandwich.
They cannot endure this and have come a few baby steps in the 3 years almost since diagnosis.
It hurts. We watch the fabric of what we believed we knew tear and shred. They cling to the old forms and have their own pain. I have wasted SO much time being hurt by that. The truth is they cannot face that what once was - is no more.
This is true of the majority of friends we once had. They can't deal with it. I have two male friends that are staying 'inside', my sister, and her whole family has rallied around. I realize that makes me lucky. It doesn't taste that way. It tastes like sand.
If I cling to the past I will get repeatedly hurt. I know because I do cling. And the more I accept the truth, the less painful it is for me come along.
That lesson has been repeatedly proven. When I take on my changing life along with all the pain, then I don't just survive this time - I can even make new friends. Like Carol here. I talk her poor ear off. Which is fair because it works both ways.
So many of us face this. There can be no more living proof of this lesson we must learn than to say that when I came here and opened up - I made a new friend right here.
Wolf I really like the way you think and the way you are able to express yourself.
Sadly not one of our friends are still friends now. I do not harbor ill feelings towards them. I came to accept it was more than they could handle. They are now a part of my past, a pleasant memory that turns bitter only if I allow it. I wish them well and I hope life is kind to them. But there can be no going back to the closeness we once had. Because though I have let go of the hurt, I do still harbor resentments. Lets just say they better hope they do not show up at his funeral service.
Nikki--I have thought about that point too--people who have not tried to stay in touch, it will be interesting to see if they come to my hb's funeral. I bet some will, and feel perfectly ok with it.
Marilyn I wish I could be like you. It is not something I am particularly proud of, but it is how I feel. I know some will indeed come and for Lynn I would hold it together and keep it all in. But after the service? hmmmmmmm........... but then again, maybe by then I just wont give a damn.
Sheila, do not apologize to us, of all people, for what you are saying in a rant or any other expression of your true feelings when it comes to this awful hand that we have been dealt. It is very difficult to play these cards with a "poker face"...which we do many times for the general public and with some friends and family. Wolf, that had to be very difficult when your friend said you talk about this a lot...that is quite hurtful to say the least. What does "a lot" mean anyway? I'm not sure why "once close" friends shy away from us when they find out about our spouses' illness, but I really believe that it could be a few things: they are very uncomfortable, don't know what to say to us or our loved ones; also they could be afraid of the illness in general and the changes they have seen in their friend. Many times people have good intentions of staying in touch, but their fears prevent them from doing so. I sound so forgiving...but in reality it makes me very angry when this has happened to us; and I too am trying to move on, and hold on to the friends we still have. They are the ones that matter most....they have been able to adjust to the changes with us, and hopefully will continue to do so.
what a shame we can't all get together,what a grand time that would be huh,seems like we all have the same problems,some more some less but the one thing that keeps us together like a big family is this @#$%^&* disease,its been said before we should all write a chapter for a book an all the proceeds go to Joan to keep this wonderful site running
Our Daughter and I have discussed and devised the basics of the funeral for DH when the time comes. They are what we want, within our means, but not exactly as big or inline with what ""his family" usually does. It is for honoring him and for closure. We know certain family---who have never stepped up to the plate, in fact have interferred in the past-- will have things to say about that. I mentioned this to DD and asked how she felt about it. Her answer tickled me, "They can KMA."
It will be what it will be. No more energy spent on them.
Our 18 year old granddaughter lives with us right now and it has been great to have her here. She is so good with Tom and when he goes off on one of his "not making sense conversations" she just says that its ok cause she understands his lingo. Most of our family REALLY understand what is going on but our oldest daughter just doesn't get it. If I rant to her (which I choose not to anymore) she just says, Oh Mom, he's just having a bad day. She lives 40 miles away and never comes to spend time with him so she hasn't been exposed to much of it. I get tired of the "holler if you need anything" BS. If she's too busy to even come visit.....
Now Tom's brother calls him every day at least once. He is taking DH to Georgia to see a practice round of the Masters in April. Lives 3 hours away but would be here in a heartbeat if I needed him. Funny how different people work.
Wolf....love the way you can put your thoughts into such great words!