Has anyone ever told you how fortunate you are that you are so strong? I have a friend that has known DH and me for 60 years. She said to me today "You are so lucky to be such a strong woman. You just know if the shoe was on the other foot, he wouldn't be able to handle it." I didn't know how to respond. Sure did set me back on my heels, though. Never thought of myself as being lucky on this journey. And I do think if I was the one with AD, he would rise to the occasion. He's always been so good to me. I suppose it is just someone elses perspective.
Mawzy, folks have told me similar things. I don't feel strong. Stubborn maybe, but not strong. I do the best I can as my wife's caregiver. She is in stage 6+ and is incontinent now. Somehow, I have been able to rise to the ever increasing challenges of caregiving. I suppose we the forum members are all living examples of "heros are made, not born."
I can relate to this. People tell me all the time that I am amazing and strong. I just do what I have to do. I think my husband would do the same for me. It is what it is.
My sister keeps telling me how strong I am. I don't get why she says that. I don't feel strong at all. Most of the time I feel exhausted and overwhelmed, and we have a long way to go on this journey. I don't have anywhere near the challenges to cope with that so many of you do. But I absolutely agree with bluedaze - This is the hand I was dealt, and I have to play it the best way I can.
I love that saying C .... "heros are made, not born." The thing is, no one ever feels they are overly strong, in dealing with AD or any illness. That in itself makes them so. I remember when I was diagnosed with my own afflictions I heard over and over how strong I was...same as when someone is dying of cancer ... my 6 year old niece giving her own insuling shots…etc…the thing is, you have no choice but to handle it. I often tell people, they would be just as "strong" if faced with the same obstacles. Even when I feel as weak as a new born babe, when someone says this to me, I take it for the compliment it is meant to be.
I may not feel strong, you all may not feel strong…. But we are…. We are staying the course and fighting the fight the best we can.
I also have heard how strong I am, Well I really don't want to be strong or a hero. However, as others have mentioned this is the hand I was dealt. So I will do the best I can. I was attending a training session years ago, the speaker's wife was a teacher & told a cute story regarding a little boy on the first day of first grade. As they were going to lunch he started to leave the teacher ask him where he was going "home, he replied" She told "No in the first grade, you stay all day" his reply was "Well, who in Hell signed me up for this" Sometimes, I think the same thing "WHO IN THE HELL SIGNED ME UP FOR THIS"
I hear that too and I, like you are playing the hand I was dealt. I think they are amazed that we caregivers can take care of our AD spouses and are paying us a compliment. Maybe they are wondering if they could do the same thing, given the same situation, or are thanking their lucky stars they aren't.
Actually, I think we are someone strong and special to try and see this horrible disease through to the end without having' to place them in a NH. Sometime, there comes a day when that is the only answer and I am not looking forward to doing it but After a certain point in the caregiving I know I would not be physically able to handle it at home. lmohr
Even before the Vascular Dementia entered our picture, my Daughter'd 7th & 8th Grade teacher told me he was impressed with how I managed everything, given my disability. I was dumbstruck for a moment, and then just responded that I was just doing what was normal. I had a choice to be an invalid sitting in a corner making potholders, or living my life like everybody else does. I went to a regular Jr.High and High school, to a Jr. College, and on to WMU to earn my BA in English and MLS in Library Science. I married a tempermental man with learning disabilities(our disabilities meshed so we each could do what the other was less able to). We have a healthy daughter who earned her BA in Biology, moved to California, and is now married. (I'm proud that she grew up to be independent and make her own life.) When Mental Illness jumped in I became even more the caregiver, and then came VaD.
Crap happens. So does good stuff. You deal with it all, or...you can fold your tent and steal away to a corner, make potholders and let the world pass you by.
We met on Feb.10, 1974, were engaged on Feb12,1974 and married on August 31,1974. Good stuff happens and you just have to grab on to it and savor every bit of the ride. The crap will eventually fall by the wayside, but you'll always carry the good stuff in your heart.
Those dates are interesting. Are they correct? Because if they are you are the only other person I've ever met who met, got engaged and married as quickly as I did. We didn't get engaged after 2 weeks because I told him that no one did that. I made my husband wait for a couple of months, but we were married in less than 9 months.
They said it wouldn't last. It has only been 47 years since the marriage and 48 since we met on Memorial Day Weekend. We were engaged in mid-August and married the following February.
I'd like to know where to sign up for the pot-holder class because when this care-giving thing is over, that sounds like a good thing to do...esp since my best friend won't be around to share anything else with me any more. People tell me things like I'm strong too, and most days it seems that the "strong" comes with whatever the day happens to bring...but somedays I feel weak and lonely and broken...today is one of those days...thankfully they are few, but when they are, well...y'all know what I mean. People always tell me they are praying for my husband, but also for me ~ And mostly, I thank them & ask God to bless their lives too. I suspect the prayers being lifted up allow us to continue to do what we do, in spite of the hurt in our hearts.
I sometimes want to smack a wall when people tell me how strong I am. I know I am strong......most of the time. But what gets me is how people don't seem to really see the pain, and the cries for real compassion, or calls for help. They blurt out canned responses. I'd rather they listened, and really felt, and not just let me talk, but talk with me about my struggles. Its just one perspective I have on it........ but I think the remark "you are so strong" is sometimes used as a cop out to really sitting down and sharing themselves with me. And really listening to me. And its people who don't really know me, and don't know what my life is really like. I think "How do you know if I'm strong or not?" I think they have no idea what they are talking about. I could be looking for thoughts, and real concern, and a shoulder to cry on, so when I get the "you are so strong" response it is rather a let down to me. Its a feeling of being ignored. And it hurts!
I do believe some people truly feel I am strong, and I believe them when they say it to me. But they are the ones who have shared my pain, listened to it, offered some realistic advice, and some realistic empathy before telling me "I'm amazed. You are so strong." Otherwise, it is just a canned response by someone who doesn't want to feel what I feel, or know any details of my real life.
When all of this started for us, I was a mess. Certainly not strong. DH and I had always shared everything and our lives were extremely 'normal'. Starting out, I was a weepy mess and sure that I'd end up with a sick husband living on the streets. In retrospect, I look back and have a very strong image of angels that held us for a brief time and carefully passed us off to the next angel to help us out. In that short period of time (2-3 years) I had gone back to school to complete a degree, we moved overseas, returned to Ohio, moved to NJ, then VA and now, southern VA. Each time and in every place, something important happened and we were able to have people nearby who helped us in exactly the right way. The Sr. VP of Human Resources for a large company helped us with disability and FMLA and Social Security issues. Another knew the psychiatrist who could get us in immediately and start that ball rolling. Someone else was able to just hold me and let me cry and be understanding. All the way down to having a parent in one of my classes that owned a moving company and when the time came for us to do the final move, helped us with that whole process and gave us all the boxes we needed to pack. Even the moves themselves, which except for the last were company transfers, allowed us to buy and then sell homes in areas where the real estate market was climbing. Those opportunities allowed us to settle in here without a huge mortgage burden. None of those events are things I would have CHOSEN to do. But in the end, each person we met carried us just a little farther along our new path and gave us a tiny bit of courage just when it was needed. Friends told me I'd come out of this different. After 4 years, I know this to be true. I am stronger than I used to be and I know that I can meet each day as it comes. Now, my angels are all of you who teach me daily how to deal with this with enormous grace. I thank you all.
I think its hard for people we meet at the post office or church or in our various neighborhoods, to know 'what' to say to us'. They mean well. Some are genuinely concerned and yet this stupid disease is so bizarre its nearly impossible (unless they KNOW) to come out with something that doesn't give us a twinge of some kind. Most of the time, NOTHING anyone says makes this feel much better but they do try to extend these comments as kindnesses.
As so many of you, I have floundered my way along in all of these things and haven't felt strong YET. Dazed, confused, scared and a mixed bag of other things for sure ..BUT on some days I do feel DETERMINED..to somehow bring us through.
When someone tells me that I am a strong person I smile and say thank you. It is a compliment....To be able to go through all that I dealt with for so many years and then watching my husband die and to do it all with grace and humor....well, it does take a strong person.
I had a weird experience a number of years ago. Throughout the time I was carrying my fourth child, and for a year or so after he was born, I was somewhat down and depressed. I managed ok, and it was never terrible, but it was a feeling I carried for some time. It lifted after a while, and when it did I had the strangest sense that I had grown some kind of new strength...sort of like I was changed in a way as if emerging from a chrysallis. I recognized that I had a new level of personal strength, but I had no idea what it was for, although I presumed it would be for something in the future. The AD thing started about 10 years later, and I assume that earlier experience helped get me ready. That may be a little stupid and mystical, but it sure seemed to be the case.
Judy I agree with you. Compare to going through the receiving line at a wedding. I think you are supposted to congratulate the groom but say something else to the bride. ..Now what is that????? or going to a funeral. Ever have trouble formulating what you want to say??? They mean well but they don't know what to say because they have never been through the situation...
Sometimes I just want to scream: "Thank you. But I DO NOT WANT TO BE STRONG RIGHT NOW. I want to be weak for a while, and I want someone to be strong for me, and I want to just be taken care of."
That, I can relate to. There are many of those times when I just want to drop my guard and lean on someone. Then I look at him, realize that's not a choice, and grow a new, slight, layer of tough.
Why do people think we're strong? Because we haven't jumped off a bridge (yet)? Because we don't go around crying the blues, but get on with living? I guess from the outside, it may look like we're strong, but few really know what goes on inside our heads. Some people do mean it to be a compliment, but I think for others it is dismissive--they are in effect saying "Well, it's a terrible situation but she has the strength to handle it, so I really don't need to get involved and offer to help."
I'm going to kick the next person in the shins who tells me I'm so strong ..... they don't really care as long as you're not asking them to do any of the care giving ... I know I sound bitter but there are so damned many phonies out there so ready to pat me on the head for being such a good care giver and so readily telling me, in the same breath, that I must take care of myself too ...... hell I could take care of myself if one of them would offer me a couple hours of their time ............. ain't going to happen so all I can hope is that I can out live Alzheimers 'cuz if I can't, placing my husband in a home won't be an issue ...... it will be a must .......
If I know them well enough, I tell those people that I am TRAPPED in a jail that I can't get out of!! It's not being strong; it's having no other option. If I don't know them well, I just say that I do what I have to.
i agree with the analytical response and hidden 'meaning' is that when someone makes that comment they are saying "you are doing the job and i am elated i dont have to offer anything else."-Divvi
Words like "how is he doing" or "you are so strong, I don't think I could do it" or "if there's anything I can do, let me know"..........yah, right! But in reality, what should they say? We aren't the only ones who have ever had to deal with an illness. Don't get me wrong, I hate this AD as much as anyone and as I read all the different comments in all the different discussions, I relate to most everything. I do, however, allow myself to feel sorry for both my husband and me and I think we all do that. But what do we really expect anyone else to say or to offer? Should they say nothing? Would that be better. I don't think so.....I don't know. Maybe not being constantly reminded of our situation and the not having to always see the pity in someone's eyes would be nice......nice to just feel what normal used to be like. But, that isn't the world we live in anymore. If I run into someone who I know who is going through something, I too will always ask how things are going. I don't mean it as anything more than.....please know that I am thinking of you and pray that in time everything will be better.
Well, I take people's comments as being a compliment. Yep, I am strong....I experienced something that none of the other people I know in real life had to endure. I had a husband who got a terminal disease, regressed through his life and ended up being bedridden and much like an infant for almost five years before I watched him die little by little. I survived, I am happy, I am thriving......I am strong!
I found that people are absolutely amazed by what all of us do or have done on a daily basis. I answered their questions and helped them to understand that it doesn't take a superhuman to do what we do...we are only doing what we do because we care.
Yes, I am sure all the well meaning people are glad they aren't dealing with "it".....I am glad for them, too.
I agree with Sandi, I feel I am strong. I would have to be to go through all the things (non-related to AD) I have been dealt in this game of life and survive. Then the AD strikes and so far, I am dealing. I know the journey will get worse but I can survive because we do what we have to do because we care.
I too agree with Sandi... I believe others mean it and take it for a compliment. Though right now I feel as weak as a new born babe.... I know I am strong to have survived all that I have.
What means more to me is the words I heard today ..." You don't need to be so strong any more.... breathe, deep breaths.. we will help you through this."
If someone asks if there is anything they can do for you, have a list, and suggest one or two things you need done. Some of the people who are asking really do mean it, but they don't have a clue as to how to help.
The ones who don't mean it, will find an excuse not to do any of the things you are asking for, but it will also get them to shut up and stop asking. It is win-win for you either way.
Today I had a very intelligent man asking me if my husband was getting any better. Doesn't he have a clue about AD? I told him right out that he would never get better that it would only get worse. No further comment from him.
I find my neighbors very nice but they just don't get it. I have tried and tried to explain about the disease but it doesn't sink in. Close friends of course understand but are still reluctant to ask how Bill is doing.
I have heard all my life - she is strong and doesn't need help - even as a child. I was the responsible one, the that got good grades, didn't get into trouble, was not sick, etc.
My hb and I had been pen pals for a couple months, met on May 5th and was married on May 16th. I was on the rebound and so was he. He always made me feel guilty cause I did good in school and he didn't. It wasn't until 10+ years into our marriage when kids started reading that I discovered how bad his reading was. When he had the neuropsych test he tested out 4th grade reading and that is what I always felt. Good thing it didn't hurt his ability to be a good printer.
But it did leave me with all the responsibility of finances, kids,household care and decisions, any planning like trips, etc. He would tell me whatever. Lately I have made him choose what pop he wants to drink. I am so tired of all the years of shopping, bill paying, financial and job decisions, housecleaning, dishes, cooking, etc. and thought I would get a break from some of it, but that is what I get for thinking!
I am glad it was him, cause if it was me sick he would never make the grade. I honestly don't think he would do it. In the past, the rare times I was sick there was no rest for me. When I had my surgeries for infertility I was glad I got a week in the hospital cause when I got home it was life as usual. When you have major surgery - it was an incision from side to side (bikini cut) - was major pain but he didn't care. In hindsight I can't believe how much of a push over I was. How much I thought it my duty.
The upside of always handling everything is that you already were on board with all areas when the disease struck. One of the most stressful things for me was coping with the dx and taking over new areas at the same time. S. and I always split responsibilites--with him handling the more traditional male stuff--taxes, finances (he was a CPA), planning trips if they were in conjunction with business, cars, the major home repairs, etc. It has taken me a few years to feel comfortable handling everything and to get things under control that he either let go or mixed up as the disease was starting up. I think you are in a better position because at least, you don't have to play "catch up" while trying to accept the fact that your lives are changed forever.
I agree precisely, marilyn. My husband was the absent-minded professor who was always given a pass on dealing with down-to-earth things because he was Thinking Higher Thoughts (in mathematics). My father taught me how to use a checkbook when I was 15, to manage the family finances because my mom was ill and he was coping with a great deal; my aunt was the first CPA in Houston and she talked me through doing our taxes for years, long distance. I drove my mom to the doctor's at the Esperson building (hello, Houston) when I was 14. I knew these things, but I didn't know how to cook (Julia Child herself laughed at my tale of draining the olives to get olive oil for spaghetti sauce in our first apartment). I was an only child and didn't babysit so I didn't know how to take care of kids.
So a great many years were spent reading how-to books in cooking and child care and later computer care; in researching places in the world I wanted to visit (a corollary of the disconnect with the real world for my husband is that he didn't mind my travelling without him). And now I've researched how to deal with Alzheimer's. With everything, of course, the more I know about something the more comfortable I feel about dealing with it.
The one thing my husband taught me, without a doubt, was to think logically: this was a great help in learning programming. And his total lack of that ability now is the most frustrating thing for me about his condition.
Oh, I live in RI and worked at Brown. Julia lived in Cambridge MA and her next door neighbor's son went to Brown so he got her to come down here. Actually it was for a little get-together at Brown, I forget why, and also a big event to benefit NPR and PBS at the big memorial auditorium. At this point she was in her late eighties, I think.
The Providence paper had a contest to tell your most embarrassing cooking stories, so I sent in the tale of my first week after the honeymoon: I used olive brine to make spaghetti sauce, and when the gas stove in the apartment wasn't working I carefully followed the directions that came with my wedding-present electric skillet on how to warm buns. You put water in the bottom of the skillet, put in a trivet, put the buns on top and cover it. I had brought some croissants home from our honeymoon in New Orleans, so I followed the directions. You've never SEEN such limp biscuits!
In any event, my story was one of three winners, I got a cookbook, got to meet her, the stories were read aloud at the event which had Patricia Wells and Jasper White, the fish guy from Boston, and someone else, all just jawboning about food. And it was fun!
I got JC to autograph my very used copy of The Art of French Cooking, which she did, graciously, and looking to see which recipes I'd splattered food on!
But I persevered and have become a good cook. For one thing, in Houston there was a tiny restaurant run by "an unholy man from the Holy Land" as he styled himself, Pete, from Syria. We'd eat there often, and Pete would take me back in the kitchen to show me how to make middle eastern food. I'd go to European Imports and get tahini, grape leaves, etc - I could make all kinds of Middle East dishes without a recipe when I was sticking to exactly the directions for other kinds of food. Still do. Also Mexican, but that's another story!!
Briegull, Mexican and Italian are my favorite foods....And the quickest to add pounds on me! Were you in the medical center area or central Houston when you lived there? We lived out by Town & Country and worked in downtown Houston.
I grew up in "Hyde Park" near Waugh Drive and Westheimer. The Tower Theater was my home away from home. After we had been married a few years we bought a house in the southwest part of Houston, and then a larger one, off Braeswood. But when we first got married we lived in a garage apartment behind an apartment house, over four cars of an eight car garage. The occupant of the other apartment was a rather unruly call girl, but it cost $69.50/month and had a.c.
Briegull, you should write a book of your life! When we got married, we were both attending the university and had a garage apartment for $40.00 a month right behing the Chi Omega house. The kitchen was so small that you couldn't stand in front of the stove and open the oven door!
When we got married 59 years ago, we lived in a one-room cabin behind a filling station. There were two cabins. The woman in the other cabin got the ice box on her porch and I got the top shelf--she had seniority and she got the top shelf. I got the bottom shelf. When she moved, the ice box was moved to my porch. We had one of those portable electric ovens and a one burner hot plate with an on/off button. The temperature control was how high or low I lifted the pan. We paid $25 a month and my FIL thought my DH was nuts for paying such an exorbitant amount of money for rent. My father agreed with my FIL I was so upset because they were picking on DH and they didn't appreciate him. I was 18 years old. Can you imagine?
But, really, weren't those the fun days. I think I'd like to do them over IF I KNEW WHAT I KNOW NOW!!!! :)