I have only been a member of the group for a very short time. I have been reading all the discussions I can and I am amazed by what you have all been though and are willing to share to help others.
As I read I am realized that My wife and I have been experiencing so much of what you all talk about on here over the last two or three years. Looking at it now it is hard to believe that I could have missed it. I think in my heart I simply didn’t want there to be anything wrong with Kathryn.
I have never been good at asking for help. I have always just handled things and taken care of my work and my family myself. I’m not sure if that is a good thing or not now. I find that it is very hard for me to talk to my friends about Kathryn for two reasons:
1. She didn’t want everybody to know about the ALZ.
2. When I talk about Kathryn’s condition I become emotional and I can’t help but cry. As I read what some of you have been thru and are going thru I get choked-up and sometimes I cry for you.
There are times Kathryn sits on the edge of the sofa holding her hands together and rocks. When she is doing that I can tell that she isn’t there. She is somewhere else. I don’t know how you all get thru this. I don’t know how I am going to get thru it. To see her like that and not be able to do something to fix it is unbearable.
Now, as I think more about the things you all say it helps me to understand more and more about what I have been feeling myself and I believe it will help me greatly as I move thru the different levels of this disease with Kathryn. I will have a much clearer understanding because of what you all share everyday.
I have said many times before - stories like yours are the reason I started this website. I was suffering alone and in silence. I knew I could not be the only one who felt as I did. In the middle of the night, I wrote my heart out, and those private writings turned into my first blogs. The response from everyone told me that I truly was not alone. Knowing others share our emotions and struggles help get us through.
Please log onto the home page - www.thealzheimerspouse.com and look through all of the resources on the left hand side. Scroll through all of the previous blogs, and there will be countless ones to which you can relate. Also, today's blog - They are in there. It may give you some comfort.
That's exactly how I felt - how could it be happening to US? Even though I HAD seen problems, I thought there were things that could fix it.. just look at the Aricept commericials. I had no idea how hard it could get. You just can't wrap your mind around it being a lengthy and TERMINAL illness. That it is only going to get worse, or at least that's the way it seems. So you jump at the possibility of getting into drug trials, or taking coconut oil.. whatever. And some of it does help some, and you think well, we'll be the exceptions. But you look back after a year or two and realize that at best you're in a holding pattern. Some drugs increase alertness, some drugs dampen aggression, and we are grateful for their small but invaluable favors. And grateful that the holding pattern is still in effect because you realize that takeoff is DOWN, not up.
At least it is not, for most Alz patients, physically PAINFUL. Not the disease, anyway, although my husband and I think others, have headaches where they never did before. And after a certain point they just endure, and you do, too. So eventually you separate yourself. I'm sure many of us have had kids, or sibs, or parents, or co-worker, or student or patient, who have for one reason or another been out of your sphere of influence or control. The kid lost to drugs, or the parent to alcohol.. And you just have to put an invisible wall between you and them. You can't function otherwise.
I remember many years ago when I was a newbie teaching school and there was a little second grade girl who had bone cancer and had her leg removed. Eight years old!! She was having a terrible time seating herself at the trestle tables in the lunchroom. My heart went out to her and I helped her learn how to do it. I helped her hide in my resource room when other kids accidentally knocked her wig off. The other teachers said "Don't let yourself get too sympathetic. It's not professional." I was of course outraged. [footnote: she lived. I see her from time to time in Providence. Striking, bitter woman now.]
And I felt that I could never teach "special ed" or be a nurse because I wouldn't be able to separate myself from my students or patients. But THAT IS WHAT WE FIND WE MUST DO, if we are to survive and be able to help them. There is a degree to which we must be objective and "professional" about the person we've cared for most in our lives, in many cases for most OF our lives.
Our cynicism becomes profound and all we can hold on to is the fact that it will eventually end, and that the best we can do is to make this ordeal as comfortable for our LO and for ourselves as we possibly can. Enjoy the small pleasures and victories and try to make the frustrations as minimal as possible, for them and for ourselves.
And yes, having each other here where we can pour our hearts out and talk frankly about everything under the sun is, for many of us, a great boon, better than a support group where you're face to face with weeping spouses and blank-eyed patients who show us what we've got to look forward to.
I know EXACTLY how you feel. I want to ask for help, but when I do, it feels to me like I've failed. I want to be able to take care of my wife on my own. I don't think anyone can care for her the way that I can. And I know I'm wrong.
I'm so sorry for you and Kathryn and for all of us here. Wouldn't it be wonderful if we could "fix" everything? As I've said here many times, I have a lot of difficulty when I'm not in control. The hardest thing for me is not knowing what is going to happen. I posted another comment on a new discussion Men vs Women: Atttitudes towards caregiving.
Take care of yourself as you continue to care for Kathryn. She's a lucky women to have you.
Jim - when I read stories from the guys, it always amazes me how compasionate and caring you are. This disease is so hidious, and it strips our LO's of their dignity. It would be so easy for us, as caregiviers, to throw in the towel, and some of us do, and that's okay, but most of us push on. I'm very fortunate at this point in my DH's illness that he is not abusive in anyway. But even if he were, I would still care for him and cherish him because he has been my life since I was 19. I've always thought that women were better nuturers, but Jim and Guy and GC and ol don, all of you guys out there have proven me wrong! God Bless you and yours! Keep on posting, all you guys, you inspire me!
diane, just because some of us decided to put our loved ones in a nursing home or what ever(THREW IN THE TOWEL)as you put it ,does not mean I don`t feel compassion or caring or love for him, i did what was best for him so he could get the best care possible, i did not throw him to the side so I could have a better life. I have cared for him until he could no longer function at home. i admire all who can take care and keep there loved ones at home, so please don`t go insinuating i throw in the towel
marygall I am sure diane was referring to some people never caring for their significant other or parent. A lot of people put them in a NH in very early stages while we who are here posting on this site are caring for them at home until NH placement is necessary. Certainlly all of us posters and lurkers here are doing our best while realizing most of us will have to place them eventually. You did a fantastic job of caregiving your dh until circumstances demanded he be placed. I commend all you caregivers who have reached the point of having to place. I hope this makes sense. A story writer I am not.
marygail - you COMPLETELY misunderstood what I was saying. I NEVER meant that placing our LO's in a nursing home was throwing in the towel. I know that I will have to make that decision at some point myself. Geez, I guess I better go back to lurking. I never dreamed anyone would think that's what I meant by throwing in the towel. Sorry if I offended. I guess I need an edit button.
My DW has never really understands that she has Alzheimer's even though her dad had it before. But she does not want people to know that she has "a problem" She has a lot of pride and just does not want people to know she has anything wrong but deep down she knows it. This pride thing we have w' Alz is the cause of a lot of our problems. The driving issue is really about pride. Bathing and hygene are a pride thing. All the mechanical things like repeating, asking the same question, griping about the same thing over and over is so exasperating. We all need so much patience but even then it is still hard. But these gals and guys can sure help each other when we need it. bill
Found this story by a mother of a disabled child and reading it helped me to understand my emotions and allowed me to be better prepared in dealing with my beloved husband. How we so looked forward to our "golden years".
Welcome To Holland by Emily Pearl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.
It's like this . . . When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michalangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes and says, "Welcome to Holland." "Holland?" you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It's just a different place. So you go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned." The pain of that will never go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you will never be free to enjoy the very special, very lovely things about Holland.
Of course, the other benefit of this story is to realize while we AD families may be angry and ask why us...why me, we have had many good years to remember where this Mom may not have had any. Anchor...trust me Holland may present some new, wonderful memories.
When we were young and carefree we thought the future was up to us. We wanted two children-two years apart, a dog named spot and a cat named puff. White picket fence around a beautiful lawn. First child came a bit early. Got pregnant on schedule for the second. She died shortly after birth. Not in the plans. Had a second girl two years after that-but realized a higher being was calling the shots. Decided to have a third child as a hedge against future calamities-that child was our son who turned out as wonderful as his sisters. Moral-live your life as it happens rather that what would have happened. We only go around once.
doneit, I can so understand what you are saying. By nature I am agnostic, but.....as I think about my life, it almost seems as if the things I have experienced were somehow preparation for what I am going through now. I have to write it down soon so I can explain it better, but everyday life doesn't always turn out the way you may have planned it, but somehow, someway I feel I've been groomed to be were I am. Of course I had nothing to do with that. I know, weird for an agnostic to say, but even though I do believe you go around only once, I always feel a sense of awe that I was given this life. Doesn't mean I am not concerned about the future with my wife, in fact, I'm scared to death, but I am resolved to give my wife the best life we both can have now and in the future. God help me. God help all of us.
I may be crazy, people have told me I am.. but I plan to care for my wife for the rest of my, her, our life.
I refuse to think about not every caring for her. I know I am being, well you know, crazy, but that's how I feel. People are different and I make no judgment whatsoever about how other people deal with this. I am only speaking for myself.
My parents were from Italy, so I'm first generation. I'm probably now, what people would call an old Italian man(i'm 51), but like George Baily, I was born old. Even though I like being a young boy. As a young boy I always had a sense of wonder and learned very early how important family is. When my grandmother was living with us she had developed Parkinson's disease. Both my dad and my uncle didn't want to have her in their homes to care for her, so they rented her an apartment. I was angry... how dare they put her there? She should be with us, we should take care of her. I guess they got sick of listening to me so eventually they decided to share caring for her. So that's what I was like when I was 6. I haven't changed my position about caring for a family member. I never will.
I've already asked one of my best friends to shoot me if I ever put my wife in a NH. Again, that is what I feel, and it is not what I think everyone should do. The NH part not the shooting part.. ah you know what I mean! :>)
guy
PS It is very hard, as my wife always used to say, to get a person's "tone of print" in an email or here on a board. You know when you are talking to someone face to face you hear their "tone of voice". It's easier to be misunderstood when you write then it is when you speak. My opinion only.
SCS, My goodness what a profound and wonderful analogy!!! It is so truly correct. I used to be a perfectionist and would tolerate nothing less than the best from myself. This is a very difficult life for anyone to live. Over the course of my life, I, like many others have rearranged my philosophy and now I am quite relaxed about "what happens". I am an optamist but very much a realist. Acceptance is the best gift we give ourself. When I was finally pushed to put my dh into a nh, I began to realize what a LIFE I didn't have. I cared for him for 8 years. No regrets. He is happy, clean, fed and well taken care of. I do not see him 24/7 but the time I do spend is much more relaxed and enjoyable. I am better for having made this decision. As it has been said many times before on this website, this disease will claim my lo but it doesn't have to claim both of us. I am a better wife for having made this decision and I realize everyday how courageous my dh was when he became aware of his disease (early onset dementia age 53). His grandmother was diagnosed at 59 and lived with his family before I met him. He knew first hand what his life was to become. We rarely talked about it. We went about our lives living the best we could. Sometimes he would be aware he was "slipping" and would cry. We held each other tight, cried together. He never complained "why me"? He just put one foot in front of the other and kept going. He is a Viet Vet and a retired firefighter after 28 years of service. I am so proud of this very personal man. I cannot begin to explain my respect for this dignified and caring man. I promised him the best care I could give him and now, that is not me. That's ok. There are no failures amoung us. We all do to the best of our ability and remember to let go and let God (sorry if this offends anyone). Thanks
Kathryn, wonderful post and Guy also a wonderful post. Every individual is unique and different and we all choose how to handle it for better or worse. I plan on placing when things get too difficult and my Dr. recommends me too. I don't believe in sacrificing my life when he no longer knows us and he can get better care than I can give. There is a lot to be said for "Quality over Quantity".
What beautiful posts and heartfelt thoughts. Agree Kathryn, to those of us who are (or were) perfectionists that phase of denial was a living hell. Hadn't we spent our life preparing for retirement. I so wanted to go to Italy!
To the point of not wanting people to know about our diagnosis. In the early years I was in denial and did not want others to "know" about Tom. But as time went on and the tears would not stop, had a come to Jesus meeting with myself. Self I said, If Tom had cancer wouldn't I share this and wouldn't people be very solicitous? What was I ashamed about? When we were out socially what did folks think ...was my husband drunk? Was he stupid? People were seeing the same deficits what were they thinking. After a few years of this I started to talk about it...found friends who were true friends were there to support us and talking about it lessened my depression as I began to face the reality of the disease and began to fight for every lucid moment. Yes Kathryn, acceptance is a gift...
I work with people with intellectual difficulties and I have been aware of this poem for many, many years. When I learned my husband had Alz I took it out of the file where I had kept it and posted it where I can see it every day. It helps me to get by and enjoy what I still have.