I would like some acknowledgment for all I do.

Barbie300 · July 16

My DH is in stage 3-4 and seems to not even realize thatI do everything around the house, including the usual cooking, cleaning, grocery shopping, managing finances, investments, bill paying, car maintenance, etc. He is not at the stage of needing help with bathing, dressing but he needs help with his medication schedule and reordering meds. I don’t think he is out of it enough not to realize that I do everything, some of it he used to do. I would like for him to at least acknowledge that I’ve taken over all responsibilities and show some appreciation but he doesn’t. I don’t think he even realizes it. Sometimes he will say can he help with something but if I say yes, it is more work explaining what to do than actually doing it myself. I feel so unappreciated.

Ed's mom · July 16

Except for the pronouns I had to think if I had written that because I could write the exact same thing. Where do they think the food comes from? Did a chef magically cook dinner? The car, the vet, it doesn't stop. Who do they think does it? I'm with you sister, same deal at my house and today I'm tired. The dog is at the door, she looks at me, "I think you need to take the dog out", if you can process that much then open the door!

harshedbuzz · July 16

@Barbie300

It's unrealistic to seek validation from a PWD.

Unfortunately, lack of empathy and anosognosia rear their ugly heads fairly early on in the disease process. The lack of empathy makes it all about him now with little concern for how you may be feeling. If he's got any degree of anosognosia he won't be able to realize how impaired he is nor the impact that impairment has on you.

FWIW, by stage 5 dad believed he was doing all of the tasks and making all the decisions associated with running their lives. Meanwhile, mom was juggling the care and maintenance of homes in 2 states, medical care in 2 states, 3 automobiles on top of the usual household chores while dad was bragging about what a great husband he was. How she resisted stabbing him in the head with a fork is beyond me.

Other caregivers see you and know the grace with which you carry the weight of all the adulting in both your lives. You're a rockstar.

HB

SecondStar · July 16

That is a really difficult situation and it's one of those things that attacks you relentlessly as you get worn down.

You're a force of nature now, gravity or the cool breeze- something that is there, important, but has become so important and consistent- such a necessary feature- that the illness makes your work easy to overlook.

One of the other posters made a great point that you can't expect any kind of meaningful praise or any kind of acknowledgment from a situation like that. That is where looking into support groups, hang outs with friends and family that take specific time for you talk about the situation and feelings and need would help immensely. You can then have serious dedicated attention for you have done and feel.

Sometimes wanting that validation, wanting that person to acknowledge all that you're doing for them can be tied to the ways and behaviors of the person they used to be and sometimes it can just be the insult to injury.

Find people that you can connect with and can become important to you, acknowledgement and validation can then come naturally, and you'll be able to fulfill that need of feeling seen and important. It doesn't even have to be caregiving related, it can be any kind of sport, hobby, club- it can be anything. There are even tons of very high quality groups on Facebook and Discord. Discord has really good groups where you can interact with people in a more impactful way; being able to see them, hear them play games with them do all kinds of things

This is hard, and by no means are these solutions ideal, but they are things that work and it's important for you to know that you are going through a difficult, brutal experience and feelings like this are completely normal and natural; So is seeking solutions.

Take a little time and grieve the fact that your loved one isn't able to give you the acknowledgment you need. That's okay and perfectly reasonable and will help put things into a less intense and more healthy frame for you. Be safe and I hope this helps.

dcare45 · July 16

Oh Barbie300 I understand what you’re saying. My reality is not to expect acknowledgement from anyone. Not from family, friends, and certainly not from someone with dementia.

What you are doing is incredibly difficult and unrewarding. It is a great devotion of love to your DH that no one will ever understand not even DH through no fault of his own.
I pray you strength and courage. Please keep in contact with us as we go through this journey together.

Barbie300 · July 16

Thanks for all the comments. I know someone with dementia isn’t capable of acknowledging what we do but it’s hard to have a thankless job, as most of us realize. I don’t expect family and friends to understand bc they aren’t here on a full time basis and can’t possibly understand the stress. I still lov the posting called “The Cavalry Isn’t Coming”. If you haven’t read it, look it up on this site.

CindyBum · July 16

Oh yes. This journey is a heavy and often thankless lift and dementia is a relentless bully. You are doing so much and making an incredibly meaningful difference in the life of your DH. We know this, even if it's beyond your husband's understanding now.

Hang in there.

Cindy

sgowans · July 16

sgowans · July 16

we all are in the same boat. I am in the middle of another day where the end of day when you want to relax is constant movement. Be strong because yes “the cavalary is not coming “. People need to live it to understand it.

Lilydaisy · July 16

I think I understand your feelings, but this is not your time. It is his. This requires total sacrifice. The only way out is to place him in a MC facility and your self-worth and ego might be intact.

I'm sorry to be so blunt, but I am in that sacrifice mode now. I feel blessed that I can return love to someone who gave so much to me and us. Others may be so direct, but I suspect they feel the same way.

I wish you the best in this difficult time. There is no easy way out.

H1235 · July 17

I think in the middle stages they are still capable in so many ways, that it it’s easy to expect too much of them. Fairly normal conversations fool us into thinking things are ok. We know they’re not, but still maybe we are just ok with forgetting for a bit. Maybe it’s because their impairment is so subtle it’s hard to distinguish from a bad character trait. We see them as being insensitive, unappreciative, unhelpful and demanding even though we know deep down it’s the dementia.

Grandot · July 17

Ditto. I’m feeling the same way tonight. I just lost patience and feel badly about it. Sometimes I think it would just be better to hibernate and not try to have a life of getting out and doing things.

Lethe · July 17

The only thing I have to add to this excellent discussion is that just as our loved ones are changing, so are we. You are in a difficult stage. Over time by coming here and seeking out support wherever you can find it, you will discover that eventually this won’t bother you (as much) anymore. You will be onto the next thing. So give yourself some grace.

sandwichone123 · July 17

We will acknowledge you and your work and efforts. If you are extraordinarily lucky you may have a family member or close friend that can see the work you do for him. You may have a spiritual connection that provides reassurance that your care and your actions matter. What you will not have is a spouse that understands or cares about what you do for him. The brain just doesn't work like that any more.

Maru · July 17

I don't struggle with feeling of being unappreciated by my DH. I have just accepted that this is what I must do. However, some of our children can't understand why I am too busy, too tired, too whatever to participate in various things with them. They haven't a clue how physically draining it is to be THE one who makes every decision, sees to it that everything gets done, and so on…then subtly lay on the guilt. (if you and Dad would just go to the Y and meet some people….if you would go for walks you would have more energy and so on). I know all those thing but I am too damn tired to take on one more thing.

Barbie300 · July 17

https://alzconnected.org/discussion/comment/277544#Comment_277544

Thanks for putting a guilt trip on me!

tonyac2 · July 17

@Barbie300

“I would like for him to at least acknowledge that I’ve taken over all responsibilities and show some appreciation but he doesn’t.”

I remember this phase (for a lack of a better word) and it was brutal.

I totally agree with @harshedbuzz

It's unrealistic to seek validation from a PWD. It’s hard not to want something from your husband that he might have readily given before. The learning curve of your spouses not the same anymore is brutal.

When I look back at myself during this time, I see someone frustrated, exhausted, running the whole house, taking care of the shoveling, mowing the grass, doing the financials, and my husband who used to be so involved in all those things could only sit and demand more things from me. :(“

On top of what the house required, I was also taking care of him, making sure he’s safe, making sure he doesn’t turn the stove on or get a butcher knife. He was immobile, so I needed to move him around with a lift

It wasn’t that he didn’t want to help, it was that he couldn’t help. He couldn’t see what was being done for him and that gratitude would be an appropriate response. The frustrating thing looking back is that that phase was the first glimpse I had of knowing I was losing my husband. What made me more frustrated and more impatient with his lack of gratitude was like seeing the first crack in the armor of understanding that I was losing my husband — bit by bit, little by little, day by day by .

Seeing him operate in ways opposite to the man I married was truly heart breaking. Dementia has two victims — the patient and the caregiver.

Barbie300 · July 18

https://alzconnected.org/discussion/comment/277629#Comment_277629

I’m fully aware that expecting validation is not realistic but I thought this site was a chance to vent my feelings. From a few comments it seems that some people think I’m being selfish and should only be appreciative of what my DH was in the past and I should not any feelings about wanting validation even if it’s not realistic. It’s unrealistic to expect to win the lottery too, but that doesn’t mean a lot of people don’t say they would like to.

Lilydaisy · July 18

https://alzconnected.org/discussion/comment/277610#Comment_277610

I'm sorry that I made you feel guilty. That was not my objective at all. My intention was to remind you that you are being pulled into a new life that you wouldn't have chosen, and that things won't be like they used to be. None of us are living the life we want, but we are all forced to accept that and make the best of it.

Venting can be helpful and this forum enables us to do that. But most of us wake up the next morning and still have to make our spouse's life the best we can, regardless of whether our spouse acknowledges our efforts. Your love and caring for your husband WILL be acknowledged, not by him but by others who know and love you. And you will be gratified by what you are enduring and knowing you are caring for your husband better than anyone else could do.

H1235 · July 18

https://alzconnected.org/discussion/comment/277631#Comment_277631

There are caregivers out there that don’t understand this. It’s good that you do. Venting your frustration is justified. From your post some may have mistakenly assumed you truly expected your husband to acknowledge all that you do. If you reread your post maybe you can see why some jumped to the wrong conclusion. It’s so hard to know where someone is at from a few lines in a post and it’s hard to express clearly how you are feeling(some of my rants are incredibly long, because things are complicated and hard to explain). I don’t think anyone here intended to offend you or be anything other than supportive.

tonyac2 · July 18

https://alzconnected.org/discussion/comment/277631#Comment_277631

@Barbie300, I’m sorry if my reply made you feel dismissed. That truly wasn’t my intention. I remember feeling exactly what you’re describing—that longing for my husband to simply notice everything I was carrying.
I was only sharing where my own journey eventually led me, not suggesting you shouldn’t grieve what you’ve lost today.
So sorry @Barbie300

Stan2 · July 18

I understand perfectly, my DW truly believes she is doing these chores. After she spent 2 years telling me that she needed to clean her "office" I cleaned it, junked it out and made it usable again. She went in afterwards, came out and asked if I had been in her office. I hesitantly replied "yes I have" and she said "it looks a lot better now doesn't it".

Timmyd · July 18

I hope I live long enough to see if the robots can step in to provide meaningful help. Robots will not get angry, frustrated, resentful. Perhaps it is just a pipe dream of mine, but I really think there is potential for intelligent machines to offload a lot of the unpleasantries of providing in home care for our loved one.

tonyac2 · July 19

https://alzconnected.org/discussion/comment/277696#Comment_277696

Here’s what I’ve read about robot caregivers.
Researchers are actively working on caregiving robots, but one of the biggest obstacles is hand dexterity. Walking, lifting, and navigation have made tremendous progress, but hands are incredibly difficult to replicate. A caregiver’s hands constantly adjust pressure and position without thinking:

— Buttoning a shirt.

— Fastening an adult brief.

—Cleaning someone gently after toileting.

—Holding a spoon without spilling.

— Guiding a fragile arm into a sleeve.

— Feeling when skin is about to tear.

— Sensing resistance or pain through touch.

Those tasks require thousands of tiny adjustments every second that our brains and fingertips perform almost automatically. Today’s robots can lift, transport, and assist with some mobility tasks, but they still struggle with those delicate, adaptive movements.

I looked into where research was on this as I wished someone else could have carried the impossible parts so I could just love him.

KarenMusic · July 19

https://alzconnected.org/discussion/comment/277536#Comment_277536

dcare45 I really hear you about not expecting acknowledgement from anyone. With my DH it is so much work. I have a few close friends who get it, but others have drifted away, not being able to understand. My adult children are completely unable to understand. In my better moments I lose myself in my art and painting—-it can receive all of who I am.

I would like some acknowledgment for all I do.

Comments

Commonly Used Abbreviations

Community Guidelines

Categories