Welcome to my website. Everyone has already said this, but it's part of my official welcome so............You have come to a place of comfort for spouses who are trying to cope with the Alzheimer's/dementia of their husband/wife. The issues we face in dealing with a spouse with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience". There is a great new section on informative videos. Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. Log onto the home page daily for new blogs; news updates; important information.
I will be away visiting relatives next week, but I never travel without my laptop, so I will be checking in and posting blogs from my "Best of Blogs" series.
I miss watching Papa playing with the boys I miss watching him fish I miss running to the hardware store together I miss bringing him cold drinks when he worked in the garden I miss our big Saturday breakfasts I miss his great Brats on the grill, how he loved his Weber Grill I miss having someone to dress up for I miss weekend escapes I miss arriving at the campground on Friday afternoons and having him waiting for me, tent and site all set up, Wine poured I miss greeting him at the door at the end of the week with a Manhattan, made just the way he liked I miss sitting on the porch at night with candles lit I miss sitting on the porch with the Sunday paper
I miss conversation. I miss having someone to talk to. I miss feeling loved. I miss having someone to take care of me. I miss my old life. I miss feeling safe. I wish he could remember my birthday or anniversary. I miss getting flowers. I miss being happy.
I miss feeling so lucky to have him as my husband. I miss sharing memories. Although I miss so many things, I know I'll miss him even more when he is gone.
I miss my little bucket of hopes and dreams. I miss New Years Eves and the kiss at midnight that held so much hope for the year ahead. I miss having arms to curl up in and feel safe and content I miss long dreamy kisses that went on forever I miss feeling desired I miss my friend
I have been trying to answer this for 2 days. Oh, I knew what I wanted to say and how I felt, but, I didn't (probably still don't) know how to say it.
Since I had to apologize for the last time I tried to be cute, I won't try that again (Even tho it's tempting).
Anyhow, if I could have, I would have cried after reading all of these. Since, I couldn't, I went back and read them two more times. I miss all of the things that you do, but, I haven't thought about them that much and certainly never put them down on paper. When I saw them all in one place, it was just overwhelming.
Oh well, I will just have to learn to handle it like you have.
Thanks for starting this thread. I think the two hardest parts of this ordeal are the things you miss and the sadness of seeing what becomes of your loved one.
I don't know how I could express the longing and heartache of losing my beloved DH , day by day ,as so many of you have! My DH is in a psychiatric hospital, and all agree that he does not belong there and was technically released in April, but there is no medicaid bed for him. Everyone on the staff loves him, but that does not provide a bed for him in a caring NH. He is completely out of his element, and how he copes with this day by day, I never will know...I know I have a problem with it, it is horrendous! I have been trying with all my heart and soul to get him out of there, with little or no help from the "proper" staff. He has so much memory..how would you feel visiting him each day, as I do, and have him tear up hold my hand, and say how much he loves and misses me, and only worried about my welfare, and wanting to just be with me for another 6 months or year?
HLK, oh dear one, how well I understand. My DH has FTD and is very aware of his declining condition and as we speak he is beginning his 3rd week in the psychiatric ward an hour away. Like your dear husband, they can find no medical reason to keep him and to date have not been able to find the nursing home bed that he needs, within a 2 hr or less ride. It tears me up so see him sitting in the hall in "his" recliner while all these poor, metally ill people go back and forth to their meetings. He isn't made to attend as they would do no good. I take him out on "pass" every other day, but it's just not what he needs. I do understand, the way Jim copes is just by zoning out in FTD style, napping, trying to read, or at least flip through the pages of the newspaper. Every other day when I arrive he searches my face to see if I'm OK. He is worried sick because I've aggravated my bad back. He has a year to live give or take and he is worried about me.
Mostly I miss spooning and waking up with him here.
I miss the spontaniety of his actions-always ready to go on some adventure. Perfect compliment to my planning personality.
I miss seeing him leave the door in the morning in his Firemans uniform and knowing what a kind and noble man he is.
I miss his presence, his laughter, his honesty. I miss him always "fixing" what was wrong- be it a burned dinner or broken tv.
I miss that he was always so easy going and now I am alone. He is still here. I don't see him but I touch him everytime I make the bed and fluff his pillow. I still have his shaving cream and razor and clothes here. I have all his shoes and suits and dressy pants. No need for them now. Sweat pants and casual clothes are all that is needed.
He still tries to mummer I love you when I see him but soon I know I will not hear that anymore. Will I forgrt what his voice sounds like? Will I remember that devilish twinkle in his eye-always looked for a good time?
I miss those bear hugs.
I miss sharing with him all the things we did. I do not enjoy the holidays. I am watching the calendar fly by and know soon it will be Thanksgiving. Then Christmas. How will they be? This will be our first year apart in 39 years. And, no, I don't want to celebrate the holidays in the nh!! I want to run away and stop feeling. I just want HIM BACK-if only for a day.
Oh hell, now I'm crying. Time to go and wipe my eyes.
I miss the good night kisses. I miss sleeping in his arms. I miss the morning cuddling. I miss the "fun" showers together. I miss his wonderful sense of humor. I miss his kindness. I miss shopping together. I miss having him help me pick out new clothes. I miss his compliments. I miss his arms around me. I miss our long evening conversations. I miss him drawing on all the cards he ever gave me.
I miss just about everything listed above, and then some. I had a "wake-up" call that emphasized another thing I miss this past week. To make a long story short, I ended up in the hospital undergoing cardiac catheterization. Only one artery involved - a 60% occlusion of the LAD, which did not need a stent. First I had to worry about who was taking care of DW. Thank God for our daughters. The younger stayed with DW, even sleeping in the same bed in case she tried to wander, the older and her husband going with me to the hospital and staying all day while I waited for the cath. I really realized what I miss when it came time to change the dressing in my groin. Normally DW would have done that, but there is no way she could, so my older daughter did it, and will have to do it again the next couple of days. I'm not sure DW even knows that I had a problem. She did not seem to know that I had be gone for 2 days, or what had happened.
Marsh, sounds like you had a good scare. I'm glad you don't have to have surgery. It's very tough, isn't it, realizing your LO doesn't even have a clue what you're going through. Have a gentle hug. Good on the kids for being there for you both.
Marsh, I am so sorry. Did you have an event, or was it discovered in a routine examination. My greatest fear is that something could happen to me here..and my husband would do NOTHING. I have congestive heart failure and cardiomyopathy with an EF of about 38%-44%. I have no answer..just keep doing the best I can do one day at a time.
That being said, I miss feeling "safe" and knowing that he will be here to take care of me. Just as Marsh said, he cannot comprehend that I broke my elbow. I (unconsciously) say OW! time and again every day when I reach or lift a heavy magazine with that arm. He has no reaction, whatsoever. I miss having someone care about what happens to me,
Nancy, I think most of us worry about the same thing, even those of us without as severe a history as you have. Several friends have died suddenly with no previous history of illness so we all need to try and have a plan in place. It seems so hard to plan for something and you have no idea what or when you are planning for. I planned to keep my cell phone with me at all times but find myself forgetting it at times. My husband would just fall apart if I collapsed in front of him. I really don't know what he would do. Our daughter lives next door but he doesn't walk to her house anymore. He can't use the phone. We just have to do the best we can.
Nancy, I have been concerned for you since I knew about your medical history. Do you have one of those "Help, I fell and I can't get up" buttons to wear around your neck? Those others of you who live alone (by alone I mean besides your AD spouse!), do you have a signal with a neighbor, such as if your curtains aren't open by a certain time, to call you or come over and check on you? Anything so that someone could call for help and get someone to watch your spouse in an emergency. We have to have something in place. I had two sets of contingencies in place, but you never know what will happen. Now I only have one. <sigh>
I miss ALL of those things you all have mentioned!!!!
Marsh, so glad that you are doing better. It is so hard when our spouse can no longer take care of us as they used to. When I would get hurt or like now with my back he just panics. So I try not to tell him the "bad" stuff, but sometime I just do, it slips out of my mouth as naturally as it would have a few yrs back. Old habits are hard to break. You are so lucky to have had this happen at a time when you kids are near and able to help. Prayers are with you, Susan
Welcome Sweetpea: you could not find a better place, for Knowledge, understanding and Love..
Marsh: sorry to hear your not feeling well....thank God for our Children, Get well soon...
SusanL...you really started a tear jerker..I can go along with all that was mentioned.. I just miss Life the way it was, there doesn't seem like any Happiness in the future, the sad part is that we know what the future holds, and there really is not much we can do about it.. we all need to stay well, so we can keep our loved ones as comfortable as possible..Love to all of you...
I miss the feeling of joy when he returned to me at the end of his work day. I miss having him behind the wheel of our car. I miss counting on him to compensate for my rotten sense of direction. Now we are both lost. I miss calling out, "Slow down - wait up" as we walked through a new city. I miss his stride. I miss seeing him in his suit and tie. I miss feeling safe in his arms. I miss letting him deal with things financial. I miss the look of confidence and self assuredness in his eyes. I miss his sense of humor.
Marsh--I'm really sorry about that 'rude' wake-up call. But, so glad it could be taken care of without more involved surgery. Take care of yourself. You mean a lot to all of us.
Nancy, when I read about the serious problems you and others have, I count my blessings.
I, too, am scared what will happen to DH if I get bad sick or injured. The fear is there, isn't it.
Marsh, very glad it wasn't worse. Are you feeling better now?
Dean, that is how I felt as well. Seeing it all in writing like that was very overwhelming. Perfect word. Dont worry that you couldn't cry. Sometimes I can't when I know I should, and other times I cry and have no idea what hit me so hard. Plus, I cried enough for the both of us *wink
I miss all of the above and….
I miss waking up to hearing Lynn say, "Good morning angel face"
I miss going to sleep safe in his arms.
I miss cooking his favorite meals just to see him smile.
I miss being a team. He and I against the world.
I miss our weekend trips to Maine.
I miss the joy he use to bring to my holidays.
I even miss his toenails scratching my legs.
Now that he is in the nursing home, I miss things I didn't think I ever would....
I miss his shadowing. I feel very lost without it!
I miss him asking me whats for dinner, after he had already eaten 3 meals!
I miss him shuffling to the kitchen to make a PB sandwich at 2am
I miss those "relationship discussions" when I could assume we could work out whatever wasn't working.... now it's AD.
I miss getting "rightfully angry" at him when he didn't pull his own weight or when he was thoughtless... now it's AD.
I miss having him on my side (for real, not just the scripted AD response).
I miss being the one who wasn't helping with the financial planning and upkeep.
I knowing that I could get sick or become helpless or just lazy in full faith that he would take care of everything.
I miss his keeping the car clean, registered, serviced.
I miss that intelligent "alert" expression I took so for granted.
I miss him getting annoyed with me for things that actually made sense.
I miss him keeping our computers up to date and running smoothly.
I miss having his being able to hang a shelf, a bird house, the curtain rods.....
I miss that look across the room when he would know what I was thinking at a party.
I miss the secure feeling I always had that he would always be there for me, that I would never be alone, that I didn't have to carry everything on my shoulders.
I miss his scientific knowledge and ability to answer most questions I'd throw at him.
I miss our wonderful restaurant dinners in which his table manners were impeccable.
I miss the knowledge that when someone asked him a question his answer would be the truth and not some confabulation.
I miss having him to share in this horrible journey I'm on alone as I try to keep things pleasant and know he wouldn't truly understand anyway.
Terry, I agree about saying something or saying it in a certain way that will bring on a rage. I miss not having to watch every blasted thing I say or do for fear of a rage.
I miss not being able to work on projects or solving problems together.
I miss an intelligent opinion.Every time it's on the tip of my tongue to ask his opinion on anything I have second thoughts. I miss his cuddle alerts on cold winter nights. I just plain miss life as it used to be.
I know I haven't done this correctly, and I hope it is legal.........but I've copied and pasted... These are things that I miss.......Perhaps they would be more "romantic" had we discovered the horrible disease before we did....
I miss having someone look at me with that look of love
I miss being able to jabber on and on, and have someone listen.
I miss alone time.
I miss weekends with friends
The terrific dad who did all possible for our kids who loved him dearly
I miss making plans,
I miss my friend
I miss having him behind the wheel of our car.
I miss seeing him in his suit and tie
I miss the look of confidence and self assuredness in his eyes.
I miss having someone to talk to at night
I miss getting "rightfully angry" at him when he didn't pull his own weight or when he was thoughtless... now it's AD.
I miss that intelligent "alert" expression I took so for granted.
I miss that look across the room when he would know what I was thinking at a party.
I miss his scientific knowledge and ability to answer most questions I'd throw at him.
I miss our wonderful restaurant dinners in which his table manners were impeccable.
I miss the knowledge that when someone asked him a question his answer would be the truth and not some confabulation.
I miss having him to share in this horrible journey I'm on alone as I try to keep things pleasant and know he wouldn't truly understand anyway.
I fear what this is all doing to my physical and mental health.
I fear that by the end of this journey - or before - I won't care about my own future. As it is I can't imagine life after this now.
I'm tired of feeling angry at the Disease I'm tired of feeling lonely I'm tired of feeling left out I'm tired of being alone in a room full of people I'm tired of my friends not understanding I'm tired
Maryd I'm like you.... Missing making plans for the future & holidays. Conversations and all the things you posted 4 days ago. You and I are a lot alike it appears. Sweet Pea
listened to a Michael Bolton CD tonight after a trying day and cried my eyes out at this song:
Tell me how am I supposed to live without you Now that I've been lovin' you so long How am I supposed to live without you How am I supposed to carry on When all that I've been livin' for is gone
I didn't come here for cryin' Didn't come here to breakdown It's just a dream of mine is coming to an end An how can I blame you When I built my world around The hope that someday we'd be so much more than friends And I don't wanna know the price I'm gonna pay for dreaming When even now it's more than I can take
Reading what happened to Marsh, and remembering what happened to me just recently, I realized: I miss having a partner I miss feeling safe, and taken care of I miss being able to count on someone other than my self I miss having my husband drive me to the doctor, and be at the hospital, and understand what's going on actually, I miss having my husband. and not an 86 yr old child who needs care and attention