I'm sure this has been covered under other topics, but since my own "what I miss the most" changes almost daily, I thought maybe other people might be in the same situation.
Today what I miss the most is someone to talk things over with. We are facing big, huge, life-altering decisions here in the next few months, and I really wish I could sit down with somebody and talk all of this over with them. Of course, this would need to be somebody who knows us both and knows about our physical and financial situation and would have good advice. Okay…my dear husband--that's who I want to talk things over with. We used to talk things over until we made a decision we were both comfortable with. Now I'm making decisions for both of us, with only my one (very tired) brain to work with. I know that DH will forgive me if I make some wrong decisions, but I don't know if I'll be able to forgive myself.
Talking. Today and every day. I agree that the things we miss change from day to day but Charlie's loss of speech was his very first symptom. He was not able to talk long before any other symptoms set in and it will always be what I miss the most mostly because it has been gone the longest.
Conversation. I have to weigh everything I say or it will result in a flurry of questions that he doesn't understand the answers to. Friends always kid me about talking too much but I'm just starved for some real conversation.
Ditto to conversation, talking and making decisions. I also miss a confident husband who walks well and acts properly in restaurants and public places, orders for himself, pays the bill and drives us home. If I detailed what happened in the restaurant today, I'm sure many of you could relate.
I miss my DW getting up really early on a Saturday and kicking my butt out of bed. Pulling off the blankets, taking my pillow away and shouting "WE HAVE PLANS TODAY!" Your coffee is on the table, move it buster!
Yes, all that. Especially conversation and mutuality. As for restaurants, I do wonder if I come across as patronizing as I move items around for a person who LOOKS normal enough. But there I am helping him find his butter knife, then grabbing the foil butter wrapper out of his salad just before he eats it, removing the butter knife from where he set it down in the salad dressing, and reminding his six times that that is his wine glass, not mine.
emily, I agree with you completely. I miss the conversations and giggles we used to have. I also wonder if servers in restaurants think "oh boy, isn't she a bossy one. Poor guy".
I miss the conversation part so much, that I already feel sorry for my son who is returning from South Korea in two weeks. He is moving back in with us until he figures out what his next steps are, and I have a feeling that I might just talk his ears off. Poor kid :)
Conversation is one of the things I miss as well as my partner in chores..He was such a huge help with the grocery shopping and errands or things to be done for the cars.. He can still do some things but not much and not without questions..things he used to know how to do. And then there are the special events. Our anniversary is next Friday the 11th. I made some gentle inquiries to see what he may recall. I think he doesn't even know it is a week away and at this point I don't know if I should even bring it up...maybe just plan a dinner out just for the sake of going out. If he doesn't mention it I don't think I will either.
My husband had (past tense) a way with elderly people----he listened to them, had patience with them, appreciated them. It's not totally gone but certainly he's lost a lot in that area. I've noticed it slipping away for awhile particularly as my parents age and he has become more insensitive to their needs and to helping them. So this week my father was taken to hospital and hubby had expressed no interest in going to visit him and seemed mostly focused on the fact that his supper was going to be served two hours beyond regular time because I was late home yesterday due to meeting with my dad's specialist. I know that is how it is and it is no use talking to him about it because it won't help anything. But today I miss his caring support of older people and I miss not being able to talk things through until we work out solutions. Too much change in his routine really rocks him and I miss that he can't go with the flow very well anymore.
I'm the same as the rest of you. I really miss the conversation. He was always such an easy going person and so thoughtful. Now I might as well talk to the wall.
Conversatiion, conversation, conversation. And, no matter how hateful the marriage was over the years (really insane), I liked "making up" after. Oh, and coffee in bed. That's the ONE BEAUTIFUL THING I remember......John brought me coffee every morning for our entire married life. Go figure. I can't.
Lord knows we are not selfish people, moorsb, or we wouldn't be caring for our spouses. It would be so nice to have that mutual caring from years ago. Their self-centeredness is one of the more difficult parts of this awful disease.
I agree with both of you. It is not selfish at all to want someone who cares about you and your well being. I believe it is part of being human, and also part of being in love and married. We all had that mutual caring--once upon a time, and we really miss it---everyday!
I don't remember the last time my DH initiated a kiss or hugged me. He has turned totally cold to any kind of affection. I see now why when I visit one of the older ladies in the church that they hug like they will never let you go.
It would be nice to talk to someone about care issues that doesn't "have a dog in the fight" meaning an ulterior motive. My middle girl asked what I was going to do if it got to difficult to manage alone. The reason I say no dog in the fight is that two of them who live on the other coast and the hubbies have more than hinted I should sell our home and move there so " they can help" only I know they have very busy lives and that so called "help" would really not be there like they think. I would only be in a place DH and I would both hate..neither of us like cold winters and humid buggy summers. Taxes etc may be impossible in the state of the fruits flakes and nuts (CA) but we see the ocean which means lot to DH and our weather is generally pleasant and temperate.
I worry about this scenario becoming a stressful talking point and at some point them saying to me ( the step-mom and we have always got along well) " He is OUR dad and this is what WE want." I know they have no legal standing with that but it is a fight I don't want to have especially when I stop to think how many times THEY have made trips overseas to visit places or gone to other places in the US but managed to let us do the travelling over so many years to see them...their return visits were few by comparison. Yeah I know about how tough it is with kids when small but hay a one person ticket for a few days for them would not have broken any of their banks. Guess the heat here has got to me and I am grumpy..shrug..
Sigh...all of the above and initiative. The ability to see "need". The ability to plan and to execute a plan of action in ANY realm. I hired a handyman/helper last weekend to get some VERY basic things done around the house. I had a list of things that needed to be done. Just being able to explain a task and to be understood and then to watch that task being completed made me so happy. I wish I had an equal partner, someone to work on things with and to enjoy the satisfied feeling of completion. Basic, simple thing. When people comment about how great DH seems to be doing, I always say yes! There is no explaining to outsiders the things that are missing and how altered my life has become. Four years since diagnosis.
I can tell you what I am not going to miss...That &#@* Man in the mirror. You would think after 3 years I would quit trying to tell him that it is his reflection he sees. I would not worry about it but it causes him so much grief. I miss conversation and if I find someone to listen I can't stop talking.
Bama!!! I thought it was just ME developing some sort of eccentricity! I talk, talk, talk all of the time! And, if someone hugs me, I just have to be scraped OFF of them! Just needy, I guess. Good to realize I'm no different than others in this mess.
Good comments from all of you. My DW gradually quit conversing about anything over a period of a few years so I don't miss a conversation about what is on the news or the weather. However, in my recent move, I found that I want to talk to her about where to hang a picture or what cabinet to put the dishes and pots and pans in and on and on.
I am going to put her things in my house and I am going to put them where I think she would put them. Thats what I am going to do because thats what I weant to do and (like most of you) I don't have anybody but me to consult.
Today I miss the companionship. Frankie Vallie and the Four Seasons here on Sun at a nice small intimate venue and DH has no interest in going. Refuses. Not long ago he would have loved a nite of "oldies". Sucks.
I miss our morning conversation over the first cup of coffee.Seems he can't handle much taking in the morning,says it rattles his brain,makes him more confused. At least he realizes it.But I miss having someone to rattle off to.I also miss have a neater home.He saves everything plus what he is always buying at Goodwill and yardsales. I know now why when they find an old person dead in their home the paper said personel could hardly move inside,that will be us.His best friend from out of state calls me every couple weeks and we have long conversations,I am so thankful to have someone to discuss current affairs with.but would ne nicer to discuss things with my husband.What a way to spendthe rest of your life. God bless us all.
yhounley, I know what you mean about the house. There are two issues here, though. First, my DH saves stuff like yours does. I'm trying hard to keep him from buying more stuff, but it's not easy. Second I have little energy or interest in keeping things neat. I want it clean, I just don't want to do the work. I just hired someone to clean every other week, but I still have to get everything put away before she comes.
Janet! When I was hurt and in recovery last year, mom hired someone to help me with the inside work......and I would practically clean the house before the housekeepper came! Finally, I figured out I was just wasting mom's money and let her go!!
Bicycling: not the kind that we can still do, to a grocery store or neaby restaurant, but the all-day summer trips exploring a new area or visiting sculpture gardens; the week-long jaunts with everything we needed in our saddle bags and nothing planned ahead of time except the general direction we were going. Yesterday was a gorgeous sunny cycling day and, yes, we rode to a restaurant with me encouraging dh at every turn, making sure he didn't go the wrong way. I made the mistake of reading this thread just before bedtime: couldn't sleep, I felt "homesick" for a cycling trip.
Speaking of needing to talk..even if it is NOT about AD, I find there is so much pent up need for some level of adult conversation on any topic however the big BUT is that others just seem to glass over after a few minutes as though even talking to us about something else is too risky for them..they must fear the negative vibes that might surface.. Watch the eyes of those with whom you chat..it tells a lot even a lot about how much they really care.
Today is my birthday and for the first time in 30 years DH didn't acknowledge it. I told him a couple days ago it would be my birthday today because I didn't want him to feel badly if he forgot it and I told him not to get me anything as I splurged on a gift of some landscaping which was enough of a gift from him this year. "Oh but you still deserve a gift," he said, sounding like his old self. So I figured he'd get a card anyway as he always has.
We planned on going to dinner this evening and three of my women friends got together to plan to take me, so I reminded him of dinner this afternoon not mentioning my birthday. We didn't end up going to dinner as I hurt my back getting some plants moved for the landscape project in the morning, plus I think my heart just hurt too much. I got a raincheck for later in the week.
I miss the poems he used to write me on my birthday and other special occasions. After a long pplateau he seems to be declining quickly so every day feels like a little death.
Happy birthday, Terry! I relate to your disappointment. My DH always liked to spoil me on my birthday, Mother's Day, anniversary. Three or four years ago he barely planned anything and I wondered what was wrong. He had bought me a very small gift . . . no card. Totally unlike him. Thought maybe I had done something to upset him but realize now it was a gradual decline in his ability to plan/organize things. So last year I was quite surprised when he announced that he wanted me to not book anything on my birthday-----he had plans for it. Well, guess what? He had very general plans but little actually organized. He thought we would go to a nearby beach and I figured he was planning for us to eat out but at the last minute he asked ME where the picnic lunch was!! First I knew he expected me to make a lunch to take along. Following lunch he announced he needed a nap so home we came. He did say he was taking me out to dinner but hadn't a clue where we were going and I ended up checking out the menus etc. So this year I told him not to fuss and suggested we have dinner with my parents at their ALF. Thought that would be simple and easier and I knew my parents would be pleased to celebrate my birthday with us. No way----he had it in his head he was going to cook dinner for me. And invite some people over. I declined the latter knowing it would be too much for him and fortunately our younger adult children saved the day----organized the food / made the cake and most importantly provided some fun conversation. Not sure what will happen next year?? My hubby is in early stages of what is likely (yet to be diagnosed) FTD. He so enjoyed social gatherings/celebrations but is showing less and less interest in getting together with friends. I miss that. I miss that we are losing contact with some long time friends because of that.
Happy Birthday, Terry! I'm so sorry you're having to experience these disappointments. With this condition they just seem to roll by on a never ending train. I know how you feel.
Since you did not get your poem from your DH, I thought I would share my favorite with you - you may already know it. It gives me great comfort; I hope it will also uplift you.
To the chief Musician, A Psalm of David. O LORD, thou hast searched me, and known me. Thou knowest my downsitting and mine uprising, thou understandest my thought afar off. Thou compassest my path and my lying down, and art acquainted with all my ways. For there is not a word in my tongue, but, lo, O LORD, thou knowest it altogether. Thou hast beset me behind and before, and laid thine hand upon me. Such knowledge is too wonderful for me; it is high, I cannot attain unto it. Whither shall I go from thy spirit? or whither shall I flee from thy presence? If I ascend up into heaven, thou art there: if I make my bed in hell, behold, thou art there. If I take the wings of the morning, and dwell in the uttermost parts of the sea; Even there shall thy hand lead me, and thy right hand shall hold me. If I say, Surely the darkness shall cover me; even the night shall be light about me. Yea, the darkness hideth not from thee; but the night shineth as the day: the darkness and the light are both alike to thee. For thou hast possessed my reins: thou hast covered me in my mother's womb. I will praise thee; for I am fearfully and wonderfully made: marvellous are thy works; and that my soul knoweth right well. My substance was not hid from thee, when I was made in secret, and curiously wrought in the lowest parts of the earth. Thine eyes did see my substance, yet being unperfect; and in thy book all my members were written, which in continuance were fashioned, when as yet there was none of them. How precious also are thy thoughts unto me, O God! how great is the sum of them! If I should count them, they are more in number than the sand: when I awake, I am still with thee. Surely thou wilt slay the wicked, O God: depart from me therefore, ye bloody men. For they speak against thee wickedly, and thine enemies take thy name in vain. Do not I hate them, O LORD, that hate thee? and am not I grieved with those that rise up against thee? I hate them with perfect hatred: I count them mine enemies. Search me, O God, and know my heart: try me, and know my thoughts: And see if there be any wicked way in me, and lead me in the way everlasting.
Happy Birthday Terry! I understand how you feel. My husband has FTD and hasn't known my birthday, his birthday, our anniversary, etc. in the last couple of years. I don't even mention them anymore. I get my well wishes from my family and kids. My husband doesn't really understand the significance of any special day or holiday anymore. It is hard when it happens. ((((hugs)))) to you.
Freedom! I miss being able to pick up and go wherever I want to go. I miss planning vacations for the two of us. He retired five years ago and I planned that when I retired I would pick up and go wherever I wanted, even by myself. I planned to go to museums, plays, movies, concerts, symphonies, and maybe get to see my first real live opera! I get scared when I realize I'll never be able to do any of those things because we don't know how long this will last. I know it sounds rather selfish, but I hate this part of his disease, the loss of my freedom.
I miss being able to tell him how I feel without getting into an argument. When we do talk, I have to be very careful what I say because if I say how I feel (be it feeling sick or in pain), he tells me how HE feels. If I ask him why he's in bed all day long, he tells me he's resting! From what, I say? Then I'm in for it! I hear about how much he worked, from a young boy on, so now he's "resting" from all the work he used to do. This, while I'm surrounded with papers on my desk, trying to get up-to-date with the bills, etc.
I could go on and on, as I'm sure the rest of you would as well. But, really, freedom is what I would wish for if I could.
Bev, sorry I didn't get back to you re your post on Emotional Divorce (i think) thread. I see I must have unchecked my email from profile but put it back now so please email me if you'd like.
I remember feeling just like you about not being able to talk and the arguments. You'll probably get to the point soon like I did where you stop trying and just avoid the disappointment and/or arguments. It was so hard to finally accept that although DH may look and sound like my husband we do not have a married relationship with the give and take of the past. My goal now is to keep the peace although I admit I still get frustrated especially when there's something I need help with like heavy lifting and he somtimes doesn't hear (severe hearing loss), doesn't understand, or just simply does not want to help me. Over the past two days (yesterday being my birthday) some physical work had to be done in order for landscape guy to install bamboo this morning. I ended up flat on my back in severe pain when I did too much of what I was hoping for help with. I MISS HAVING HIS HELP.
Hey, Terry ... happy birthday!! My wife missed my birthday last time around as well. What made her feel even worse was that she missed our son's birthday as well ... he was my birthday present 40 years ago. No cards for either of us. Today iss our 43rd anniversary and I reminded her twice in the last week when we were in stores so she could buy me a card ... we always exchange cards on our anniversary. But this morning ... no card! (Of course, she MAY have bought me a card and 'put it someplace;' to be safe ... and now has forgotten where she put it!) Anyway, when she realized that, she wrote something out on paper ... but the fact that she forgot to buy a card ... twice ... is unsettling.
I don't expect cards from My DH. If he remembers my birthday he will give the wrong date...the other day it was 8 August. It is in August but it is the 21st. If he thought of buying a card I would take him but who knows how long it would take for him to choose one. He is a sloooow reader. lol. If he does remember we usually go out for lunch (he pays) so that is good enough.
Great, Then I wont have to explain to you who he is. Sorry, Don, you have been having problems. If I could wave a magiic wand I would take care of all our problems.
My life....I miss my life, with my children, grandchildren, my Mother, who is in a nursing home 700 miles away,friends & neigbors & of course my DH... it's all been put on hold. Some, never to return, while I just keep getting through the day, after day, after day. If I surive my DH, I have already informed my Doc, that I do not want to live long enough to be a burden to my children..Life is but a blink of an eye.Enjoy what you can.
My old life the old dreams, the plans for the fulture. Someone to hold me. I am so hungry for hugs, for love, it has been so long since I felt my love truely reciprocated.