What our family and friends should be told.....

Discussion in 'Caregivers' started by hope2001, Mar 17, 2004.

  1. hope2001

    hope2001 New Member

    Letter to our Family and Friends 03/16/04 10:09 AM

    I am not trying to speak for everyone, but from my own perspective I can tell you what I NEED from my family and friends and so seldom get.

    I NEED TO BE SHELTERED sometimes, dropped off at the curb and told, don't try to do that, let me help you....
    There is so much going on in my body that I have no control over and it does get overwhelming and exhausting to my body.

    I NEED TO FEEL PROTECTED and that even though I can't be safe on the inside (physically) at least I can feel like if ANYONE or ANYBODY wants to "get at me" then they are going to have to "GO THROUGH" my protector.

    I NEED TO FEEL CHERISHED as if my family or friends feel they are blessed for each day we have together, because life is so fragile.

    I NEED TO FEEL CARED FOR when I am feeling sick and everything is hard to do, even buttoning a shirt or brushing my teeth and I WOKE UP WITH ONLY 2 MILES OF ENERGY INSIDE OF ME AND A NORMAL DAY TAKES 25 MILES WORTH. I need someone else to say, "let me empty the dishwasher", or "I AM GOING TO run errands for you, so what do you need"? or "You sit down and we'll continue talking after I do a quick run with the vacume or pop a load into the washing machine".
    I feel guilty when I can't do the day to day inconsequential details that are the glue holding the household intact.

    I NEED TO FEEL RESPONSIBLE I know what the latest research is, and I am on the internet about an hour a day trying to find out more, please don't tell me you heard Vitamin b-12 might cure me, don't you think I have tried all the miracle cures and read all the women's magazine articles and don't you know how disappointed I get with myself and my own body for NOT COOPERATING?

    I NEED TO FEEL FORGIVEN for NOT being a full person (in the world's view). You may not hold a grudge and I know it is hard on you to pick up slack, but I don't FEEL FORGIVEN, I feel guilty.

    I NEED TO FEEL LIKE PART OF A TEAM all working toward a common goal (our life together) and it is OK if my main contribution is SPIRIT.

    I NEED TO FEEL INCREDIBLE I get angry sometimes seeing a tennis mom sachet into the manicurist after lunch with the girls. I WISH I had the energy to even have a manicure, let alone waste precious energy on such frivolous pursuits as gossip over drinks at the club and judging other women's clothes and homes and accomplishments.

    I NEED TO FEEL AFFIRMED. You wouldn't believe how many people scoff at you because you can't "Do just this one little activity, and it is expected..." I get tired of feeling guilty for not BEING ENOUGH to people that I don't even care about in the first place. When I rant over the injustice of my illness, don't try to talk me out of it, or encourage me (at that time) just say "I KNOW, IT ISN'T FAIR, YOU DON'T DESERVE THIS"

    I NEED A FRIEND who is there for me on the good days and there for me on the bad days, too. I get left out of a lot, because I go for periods of time when I am unable to do much, so they forget about me, or just don't even invite me, because they think I probably can't participate. It is LONELY being ill over a longterm.

    I NEED TO BE ENCOURAGED Sometimes the thought of being sick like this for the rest of my life is overwhelming and induces short-term panic. It sometimes seems like a life not worth living, because the quality is so poor, so much of the time. I am a christian and I have great faith, but it can get overwhelming, especially when people imply that "if your faith were greater, or if you would just DECIDE not to be sick....." We HAVE ALL TRIED THAT - it doesn't work.

    I NEED TO BE PRAYED FOR Frankly sometimes in the middle of the night when everyone is sleeping soundly and there are only the creaks of the house for company....I'm SCARED, REALLY SCARED. I wonder who will remember me when I am gone and if I am making any sort of impact on the world at all that will validate my life. REALITY looms large and can feel ominous. It seems like I am being PURSUED NIGHT AND DAY BY A STEALTHY UNSEEN STALKER, who knows my every move. It would feel wonderful to really believe I am actively prayed for.

    I NEED TO BE ANTICIPATED if I am sick in bed, know that I am dying inside, because I am neglecting things that need to be done, and the PRESSURE AND STRESS TO GET WELL is VERY GREAT because I know when I do get out of bed THERE WILL BE EVEN MORE RESPONSIBILITY WAITING FOR ME than BEFORE I wore myself down into a state of exhaustion and bedrest. Just come on over and SILENTLY DO SOMETHING/ ANYTHING, and don't even expect gratitude, I may not even realize, but when I get up a lighter load will be blessed.

    I NEED TO BE CARED FOR I just got an email to a group of us asking us to all get together and get a nice meal up for someone becaues she is down with the flu, poor husband for taking care of her! I LIVE WITH THE FLU EVERYDAY OF MY LIFE! The last time anyone brought a meal to us, was a year ago, after I had been extremely sick for 6 weeks. Before that it was years. No one even THINKS of reaching out to a chronically ill person, because they might be EXPECTED to do it monthly or because they are so used to you being sick, they don't even realize sick MEANS SICK. And our families suffer too, and would like a warm meal, as much as the mom who just had a baby or the woman with toe surgery.

    I NEED TO BE APPLAUDED give me CREDIT for being a SURVIVOR AND A THRIVER. TO KNOW that there are women out there who have never had more than a broken acrylic nail and a housekeeper that wasn't reliable, is infuriating sometimes, especially when they think they must be better than me or I wouldn't be sick all the time and unorganized and uninvolved...... I know we don't know what people's lives are really like behind closed doors, but I would love, have prayed, to JUST BE SHALLOW FOR A DAY and take every STEP, BREATH AND ACTIVITY FOR GRANTED without deciding WHICH two things I could do today that will make a difference over the next 30 years (it is almost always be a good mom and wife).

    I NEED TO BE RESPECTED I am very intelligent, I am attractive, I was once beautiful.... It is depressing to swell into a stranger because of meds and to have no clothes that fit attractively, but I'm too tired to shop for them, and if I did shop for new clothes, I wouldn't have energy to wear them anywhere anyway. I CAN DO THINGS.....I just can't prove it very often. I AM SOMEBODY not a disease, but the disease overshadows my chance TO BE MYSELF.

    I NEED TO FEEL NORMAL Sometimes it feels like a BOLT OF REALITY HITS ME, as if I JUST REALIZED I am not a healthy person for the very first time. It doesn't seem real or possible for a minute, almost shocking. I can't do everything, but sometimes it would be fun to just play with no worries. HELP ME ESCAPE for a few hours to a play or comedy club, somewhere different where no one knows and I can forget.

    I NEED MY DIGNITY It is important for me, with so little control over anything else in my life, to at least have my dignity. Please DON'T SPECULATE ABOUT ME with other family members or friends and compare notes about my progress or lack of progress or determination or mindset, or your opinion of what I could, should or ought to be doing differently. It is easy to be smug when you aren't wearing lead weights around your ankles every day and trying to walk through knee deep water, this is what it really feels like. Everything I do is ten times harder for me than it is for you.

    I NEED TO FEEL ACCEPTED AND INCLUDED not like a project to be SCRUTINIZED for worthiness and validity. I am not going to doctor after doctor and struggling to survive for attention. Believe me, if I wanted attention, I am bright and capable enough to get it in other ways. I would rather be noticed for my good qualities and accomplishments. Even if I were getting attention, which I am not, it certainly wouldn't be worth all this seclusion and suffering. REALLY who WANTS to have medical tests run and spend travel money on medication?

    Not every day is like this, there are good days, and that is what makes the bad days even more depressing sometimes, because you realize what you are missing.
    Don't talk, just DO. Actions speak louder than words. You have the freedom to buy a plane ticket and go anywhere in the world and enjoy it. You can take a job, or join a club, or garden or take a hike or run in to a new shop or.............anything you decide to do on a whim. I have to think and plan and strategize. I am afraid to make plans because I really don't know if I will be able to follow through on them. Even planning takes energy, that may not leave enough energy for the actual doing. YOU PLAN SOMETHING and pull me along, with no responsibilities and NO GUILT if I can only do half of the plan.....at least we will have done something.

  2. deejaymaz

    deejaymaz New Member

    for the words that were in my head, but without the ability to get them to paper---anymore-----I miss me-------
  3. Lupian

    Lupian New Member

    I hear everything you are saying, so, so clearly. The indignity of being forgotten - in a business the clerk speaks to the person accompanying you, because a person in a wheelchair cannot be conducting their own business!
    To be totally left out would be painful - a god friend could take you along anbd be able to help with the things which are dificult for you. Where are these good friends? Afraid if they get close to you it might rub off on them? Ask your family members to read The Spoon Theory [you can find it through Google or another search engine] as that may help them "get" it.
    I am so grateful to live alone! My husband found my illness "depresing", and his disappearanc eand the subsequent divorce were blessing to me, though I didn't know it at the time.
    I hope you will be heard now by those who so badly need to hear you. If not, well, I hear you - very clearly - and I understand exactly your feelings.
    You said "It would feel wonderful to really believe I am actively prayed for." You can now believe that. For whatever reason by the grace of God I wandered in here tonight, and was led to your post, and was prompted to respond. If I never return here, know that you are actively prayed for. Warm hugs for you

  4. herrera

    herrera New Member

    Thank you for helping me understand my mother a little more. Your post was something I needed to remind me about what she goes through. Sometimes we as caregivers get preoccupied with our concerns and responsibilities and forget the other side. Thanks.
  5. kd5k

    kd5k New Member

    I read this a few days ago. I am a caregiver for my mother in law with alzheimers. I started out here but people don't really post too often. So I went over to the alzheimers message board and found alot of caring, concerned, and loving people. It has helped me so much! I read this and cried. It is so true that we become so wrapped up in ourselves we forget they are people too. And on some days,(good days) they know what is going on but maybe not able to put it in words. This disease really bites!! Debbie
    p.s. I was just gonna say I copied this and posted it on that board for others to read also.
  6. Zonie

    Zonie New Member

    This is my first journey into this site and the beginning of what will probably a "long" journey into the unknown. My husband is showing definate signs of ALZ and is in the testing phase. He is 59 years of age and this has sent me into a total tailspin. You have answered so many of my questions that he or myself could neither answer. He cannot verbalize his needs even at this early stage since he himself doesn't know what to anticipate. And I have already sensed some of his frustrations when I have to answer questions posed to him by his doctors. He has never been good at expressing his feelings, so this post helps me immensely in knowing what some of his feelings and needs are and will be. It gives me a much greater insight into what may lay ahead.

    Thanks again....SO MUCH