The little things that are hard

Jeanne C.

Still learning the board (and how much you hate the new format) so I'm not sure if this is an appropriate post, but here goes.

I have been dealing with some awful things as we have started this journey. I know some truly horrific things are coming. But there are some little things that have just been tough. I feel like, in the grand scheme of things, they shouldn't hurt so much, but they do. I'm hoping it will help to share them with others who have a partner with dementia.

Second opinions: sometimes it's freeing to make a decision without consulting my husband. But sometimes I really want a second opinion on simple things like which patio table to buy or what should we get on our pizza. It makes me feel lonely.

Things that were "his job": standing with my DH on our table-less deck today, he freaked out over a spider. For our 25 years together, he has been the capturer of spiders, releasing them outside and today I had to sooth him. Once I had him settled, I had to lock myself in the bath to cry.

Not having him to chat with at the end of the day: I want to share stories from the day or talk about the Phillies game. But he's either agitated or asleep.

These are tiny things but they really bring home the fact that I'm never getting my husband back. I'm taking a break from finishing my taxes (don't judge) that I never had to do on my own before and I'm grateful that he's calm tonight and we had a pretty good day. But I miss my former CPA husband for so many reasons.

What do you miss?

Ed1937

Jeanne, I've always said there are no small losses. Every one of them hurts.

What do I miss? Every single thing about my wife, before dementia. I hit the lottery with her.

M1

Her laugh. Her incredible expertise in so many areas. Her charming ways of relating to people of all stripes.

It's an endless list of all the things that go into a shared life when you are fortunate to have a happy relationship.

I'm sorry you had a hard day. No judgement on the taxes. One of our good friends who has been single for much longer than she wants says she just misses having someone to pick up the other end of the board. I think that says it well, too.

Joydean

Jeanne, you are so right. It’s so many of the little things that I miss. I don’t mind doing all the work around our place but it takes twice the amount of time because I have to keep one eye on what I’m doing and the other on dh. I don’t mind making all decisions that need to be made but it would be so nice just to have him to talk to. He can only get a few words out but even those make no sense. I don’t mind bathing him, cleaning him up or even the mess but oh how I miss not getting a hug once in a while. I miss my husband, my best friend and my partner in life!

PookieBlue

April 17, 2023

Jeanne C

    I’m in the same boat, different DH. There have been no second opinions for several years now. I learned to only trust what I could actually see. 

    He still has a few of his jobs now. I do EVERYTHING else. He makes the bed most mornings since he sleeps later than I. He does breakfast dishes, although I put them in the dishwasher after he ‘cleans’ them. He gets his newspaper most mornings, but now has trouble remembering which door to go out. 

     Our chatting 90% of the time is me answering his unrelenting repetitious questions about the mortgage, where he lives, aren’t I his sister? Etc, etc. I let him do most of the talking and it is an exhausting continuous circle. I am glad that he is talking, though. Recently I have been writing down parts of the conversations as occasionally he can make me laugh at the content. Many times the ‘chatting’ ends up with my hidden tears. 

     I am seeing that he recently is showing that he is troubled by his forgetfulness. Up to now I have just been taking things as they come up and anything I am doing for us, in his mind, he has been doing it. Kind of like he thinks we are the same person or something. I don’t correct him as he may be feeling more worthwhile with that mindset. I started taking over EVERYTHING probably was earlier than I had to, so there wasn’t much transition to anything. I guess I realized early on that I was never getting him back so I just took over. I always have been self sufficient, always handled the finances etc. The most difficulty I have is figuring out when to start selling off his many vehicles. Yeah, he’s not coming back to help there, that’s for sure.

60 falcon

Take more pictures, better yet, take some videos. I miss my wife's voice and I'm afraid I'll forget what it sounded like. I still have her cell phone and call her just to listen to her voicemail message.

I took some videos but I screwed up by only taking video of bad times so that I could show the doctors her behavioral issues. I don't look at those because that's not how I want to remember her.

Battlebuddy

I agree completely with Joydean. Ditto to it all. I miss my husbands sense of humor. He was so funny. He always saw the happy side of life.

Vitruvius

To 60 falcon's comment. I took a number of photos even as the dementia progressed so that I could remember my DW. But I never took any video, I just never thought to. Now that DW is on hospice it's too late and I wish I had video when she was better to hear her voice, see her smile.

To the original comment. I visit DW every other day but I still miss everything about her and am truly lost without her as my partner, lover, friend. My days seem so pointless, I just stumble through them one long day after the next.

Joe C.

Jeanne, As Ed started above there are no small loss, also there are no inappropriate post about the losses we suffer. I certainly remember posting about what seamed like “small” losses I experience when we were at the earlier stages of this journey, I still remember how much they stung then & still hurt today.

Another Day

All of the above plus the discussions we used to have, the card games, sharing the little things like going outside to see the moon or see if we could spot a satellite. I miss going places, vacations, trips to visit family and friends. I miss going to church. I miss going out to eat once in awhile. I miss having any social life whatsoever. DH had already become a recluse for several years even before the covid stuff. I miss things getting fixed when they break....You Tubes do help with some of that. I miss planning and cooking meals together. I miss eating together. I miss my husband, best friend....someone pass the Puffs Plus.

Jeanne C.

Thanks, everyone. Ed, we're both very lucky - I hit the jackpot too! Falcon, thanks for the advice about video. And everyone, thank you for sharing what you miss. I truly feel a little less alone.

I'll share a funny/cute thing that happened last week. I was on a conference call that ran over lunch. My office is in the loft over our kitchen, so DH usually hears me. When I came down after the meeting, he had set the table for 6 (napkins, drinks, everything) so my coworkers could join us for lunch. It's amazing how his sweet kindness pops up to remind me of all that I love about him. It also gave me a good chuckle.

RCT

I ,too, miss the little things..thanks for video suggestion. As I have mentioned before I am seeing an anticipatory grief counselor for exactly this…since 2019 I have been totally in charge. My husband still does his daily activities but all decisions are mine….at first I was too overwhelmed to be sad but now that I have adjusted I am very sad..i have learned who to call when i cant fix something which is most things haha That being said i miss the fun things too…I miss traveling in our RV…going out to eat…walking on the beach looking for shells…going to the movies… I practice gratitude for what I do have and pray a lot! This thread helped me…thank you all!

mrahope

Honestly, I could have written many of these replies. I miss so many things, but mostly, I miss his empathy, listening skills and consideration. My DH was a clinical and forensic psychologist for many years, so these were his "stock in trade". I could say to him, "Please, just listen" and he would do exactly that for however long I needed him to. Now I live with someone who can go on and on and on with crazy ideas, and yet can still read my body language well enough to know that I'm angry about hearing his complaints about aches and pains, lack of ability to drive, etc. etc. over and over again. Not only do I feel angry, but lonely and like a failure because he never seems happy or stable. And he DOES get that he is losing his memory, and is angry with me and the world about it. Yargh!!

M1

Thanks for starting this thread Jeanne. It's a good one.

CStrope

Shopping. I sooooo miss shopping. Unlink most men, my husband absolutely loved to shop. We had so many enjoyable days just wandering through a mall or shopping area, stopping for a coffee and treat, having lunch, or even a beer. We could wander for hours just looking at shops and enjoying watching people. Now I get almost everything I need off Amazon or some other site.

quinnr

I am new here. What do I miss. I miss my husband. The person I am interacting today looks like my husband and sounds like my husband, but really isn't him.

1. He was highly capable and a rock. Now, If I am overwhelmed, he gets flooded and nothing good comes of it.
2. I collapsed with chestpain/arm pain and asked him to call 911 (I have stress induced cardiomyopathy now) - he threw the phone at me and told me I was doing this to myself and left me alone. NEVER would I have ever expected that reaction. Talking with him afterwards, he doesn't think my situation was life threatening because "I did not die". What a weird argument to have.
3. His organization and time management skills. He was an engineer. He is Mensa smart. This is why most people don't see his disease yet. But we had to take some furniture downstairs, and I watched him get frustrated not knowing which direction to change the object in order to get down the stairs.
4. His willingness to please and show care. That is all gone. He can't do it anymore. He tends to be oppositional.
5. Sleeping in the same bed with him. He is agitated at night and he has restless leg. He is now on the couch.
6. His boundless energy. I am the doer now. He is zoned out or fatigued easily now.

I have cried buckets as he has gotten worse. He is young 62 years old and now disabled. I am now in charge of everything and have to be hyper vigilant if he takes on a "project" otherwise a document we need may get shredded. We have 3 kids - teens. That are soon off to college. One of my children has mental health issues. My husband tried to commit suicide before we knew his diagnosis but while he was having changes that were noticeable. My son found him in the woods and rescued him. This son then became suicidal. My husband used to be my rock and anchor. But now, my dh can't even see that we have crisis and trauma in the family. So now I am alone taking care of my dh and my son as well as the other two kids and it is very lonely and overwhelming.

Thank you for posting this. There is so much that I am missing and that I am mourning.

M1

Quinnr, you have come to a good place. We all try to support each other.

Jeanne C.

Quinnr- I'm sorry that you and your family are going through this. This disease sucks. And it really does impact everyone who is close to the PWD. I often struggle to remember that it's the dementia and not my husband being thoughtless or even cruel. I'm fairly new to all of this (similar to you, my husband is only 64). I've gotten great advice so far on this board and everyone here really will provide support. Sending you lots of positive vibes. Hang in there, be kind to yourself and keep posting.

Jgirl57

My HWD used to be the one who made the coffee and pour our first cup. It always felt divine to have him hand me the perfect cup of coffee in the morning . It is a small pain I feel every day as I make and pour our morning coffee. I think it is the cumulative of daily small things that add up by the end of the day that is heart breaking.

Lgw

I feel so lucky that I never had to face a mean DH but he is gone and that hurts. There is emptiness behind his eyes. I am having to change a diaper on someone who was bright and could fix anything. I wonder with each phase how long will this last. I was feeling at least he didn't have hallucinations and now we have those to deal with too. Our kids are grown and the are sheltered from most of this. The memories of the past are what get me through these tough times. What a terrible disease! This site has helped me so much. Sorry I didn't perk up your spirits but you will make it.

Debra

I know exactly what you mean, such a difficult adjustment. No one understands this like we all do. I feel so sad too, so sad for us all.

GiGi1963

Therre are so many things I miss that my DH use to do. The car maintenance for one. I now handle it all. Inspection, registration, maintenance. One thing I have trouble with is putting air in tires. After 4 attempts at 4 pumps my DH went into store and came back with a young man to help me. I was so overwhelmed I started to cry and the young man hugged me and told me he does his Mom's. DH doesn't remember how to do it but he came to my rescue like he always did.

eaglemom

This is a good thread and great remarks. I can relate to most of them. One thing I noticed the other day, on a very rare occasion of us eating out. When the check came, DH just looked at me and took a drink of tea. Before he would have taken his wallet out and put his credit card down. I waited a bit, & it was clear that wasn't going to happen. So I put my credit card down, no big deal. But it was a big deal. He either had forgotten we had to pay, or didn't know how to pay. Either way it was another skill that's gone. When the staff brought it back for me to sign I did notice him looking at the check. I ask DH if something was wrong. He said no, but don't forget to tip, you know your math isn't too good. And he's right, but I did leave a generous tip. Its not one thing, its all of the little things that add up.

eagle

Sandy1956

This is a wonderful thread and posts. I miss my DH of 45 years making the coffee each morning and bringing me a cup as I was getting ready for work or leaving a cup on my nightstand when I slept in. I miss him tucking me in at night with a hug and kiss. I miss simple conversation, taking turns reading to each other, the strength and tenderness of his hugs. One day at a time. Often one minute at a time. Love and peace to you all.

tigersmom

I miss my best friend. I miss the way we would lie in bed at the end of the day and just laugh. I miss his sense of humor and his empathy. I miss being heard and truly seen. I miss the way we went 25 years in a marriage without arguing. So much has been lost in so short a time. Not even two years since diagnosis.

Jazzma

This is a wonderful thread even though full of pain. It's so hard to lose someone a little at a time. My DH was one of the most 'alive' people I've ever met -- adventurous, smart, capable, funny, happy. He could make anything, fix anything. We went on long random road trips and enjoyed discovering small wonders. Now he is not gone, but he isn't here either. He watches TV all day though he has trouble with the controls. He cannot figure out how to put a pillowcase on a pillow. He is till sweet and loving and funny, but lost. I know we're in a 'good' place still in that we can talk a bit and he is mobile, can go to the bathroom and get dressed. But yes, it hurts so much when I remember what he was. Thank you all.

jfkoc

Jeanne...the missing is one of the horrific things.

I don't think the missing ever goes away. My husband died 5+ years ago and while I do not "miss" all of the time it will still flood over me at times

PookieBlue

Jazzma, same story with my DH. He can also still open himself a beer and unscrew the cap on his wine in the evenings. He takes many naps during the day, and luckily sleeps well at night. He is always confused as to our marriage (35years) and our house (24years). He wears me out with all his needs and redundant questions, always needing clarification but never comprehending the answers. I think I must be developing my own skull of mush by now. The good thing is he can still be very humorous and kid around with his confusion, so I consider myself fortunate in that sense. So enjoy what I can.

Davegrant

My DW and I have a blended family and while they are all independent adults, we have the family dynamics that one would expect with the children, grandchildren and great grandchildren, my DW was the center of all the activity and was the lead in holding the family emotionally together. When Dementia hit about six years ago I began to take over her role in the family, cooking, shopping, cleaning, etc. Since I retired about that time it wasn't that big of a deal as long as it was doing only the minimum expectation. What was huge was the emotional changes that did and are occurring. She is just not there for me emotionally as she once was. The result is the feeling of loneliness as I deal with life situations whether they be routine events or holidays or problems, it is both sad and challenging.

RickM

Watching my partner decline is heartbreaking. We met 40 years ago. It was quick romance. I was in the process of giving up my living as a musician playing clubs, continue my education in the medical lab, and relocate to the northwest from Southern California. I met my wife to be in a class at college, we hit it off, told her of my plans, asked if she’d like to join me, she said yes, and the rest is history. Sadly, it’s a history only I remember. We spent glorious times, working our jobs, making friends, enjoying outdoor adventures, raising our son. We have always felt very fortunate.

Now I find myself looking into memory care. My loving wife sleeps long hours at night and lacks the energy and motivation to do much in the day. I am fortunate in that she is still a sweetheart. She seems to acknowledge her condition yet still does her best and even maintains a sense of humor.

I miss being able to share our remembrances of years past. Memories are just mine now. I miss having my partner, the one who helped me through the years, sharing our lives. I just miss having my best friend…as she was

I need to figure out how to find joy in the time we have left.

M1

I do love this thread. It tears little holes in the heart when my partner asks me how we met, how long have we been together, and doesn't know my children. My son was not quite three when we met (31 now), and he was entranced that I had met someone who built houses--his favorite book was "Harry Builds a House" by Richard Scarry. when I told her that, she made a point to take him to a job site that was being framed, and she bought him his own tool belt and hard hat. Stole my heart--and his. They have been best friends ever since. And now she doesn't remember him.

She also took this picture to commemorate. Gotta love the zebra outfit.