Kind of hurt my feelings when...

HeyDforDaughter

my mom forgot who I was (yes, she mixes my adult daughter and I up all the time) but this time, when my Mom looked at me puzzled, after I reminded her that I wasn't my daughter and happened to ask her "who am I." My mother answered that I was her niece. She didn't say which niece but categorized myself as one and she has many.

That response hurt because I am not only her only daughter but her only child. I am with her almost 24/7 through everything and take care of everything Mom-related, all of my life without any question. 

And I know it's the disease and her brain is broken, she doesn't know what she is saying or thinking, etc.. But that remark got through all the barriers that safeguard my heart through all of this. 

Yes, she has said once or twice before that she didn't know who I was. It was fleeting. But to me, not knowing who I was at all, wasn't as cutting as her response today. Because I know her nieces and they haven't once in years (including but not limited to this shelter-in-place year) ever lifted a phone to contact her to see how she/we are. (and they owe a lot to my mom, not in monetary terms but for their actual existence and success).

 And lately, my mom will in her delusional state say so-and-so (fill in niece No.1's name) was here today and gave me a shower. And I know, don't correct her but I felt compelled to say no that was me Mom. Or she would ask me, (fill in niece No. 2's name) is in the living room give her something to eat. I guess if she was going to fantasize about anyone else but me helping her - my heart would say, pick anybody but them to take my place in your mind.

I just feel that this disease is not only just taking her away from me but it is also taking me away from her. 

It's not my nature to whine or feel sorry for myself. I'll carry on. But I'm open to tips on how to take these blows to the gut. Thanks for listening.

MimiMinder

Thanks for sharing your story and seeking out advice. Hopefully this won't come off as preachy, but I had a super short night and my filter might be a bit lacking today. So, yes, I totally get where you are coming from. Your mother cannot help what comes out of her mouth and there is no telling what might bubble out and punch you in the gut and squeeze your heart. You and I have to control our reactions to what our mothers say.

When your mother says something totally wrong (like 'Sharon was such a dear and helped me with my shower today') just go with it. Respond with something positive - like ' wow, your hair looks so great today' or 'I love a good shower' to move on from the moment.

You have the burden of knowing that your cousins have not done diddly squat to help your mother or interact with her. Your mother isn't burdened by that and probably remembers them from years gone by. If you sing, belt out "Let It Go" or hum it quietly. There is no need to reorient your mother to reality. It will just increase your blood pressure and being 'right' doesn't really matter when you are dealing with dementia.

One great resource I might suggest is improv. Yes, improv! It is such a wonderful tool to learn to be in the moment with your loved one. Stomping Ground Comedy Theater in Dallas has put on some tremendous (Zoom) Improv for Caregivers sessions. Such a game changer. You can check out them out at stompinggroundcomedy.org

And my final suggestion might be to guard your heart. If you know the answer to the question has the potential to break your heart (like asking your mother who you are), don't even go there. You know that she loves you, even if she cannot articulate who you are. 

Hang in there!

dayn2nite2

For me, as long as I could tell my mother thought I was a nice person who came to spend time with her, that was good enough.  Hopefully you will come to that point of acceptance.

zauberflote

HeyD, that must be a true gut clenching heart breaker, I am so sorry. A story about the stage-6-7 woman who lived in the room next to my mother in MC. Mom was there 17 months. Most of that time this woman was bedbound, and for the first six months or so she vocalized piteously for hours at a time. After that she slept mostly silently until she died. One time I happened to be there at the same time as her daughter, who was sitting by her momma's bedside asking questions. The one that broke my heart was, " Momma, who am I? (Moaning) Momma, you know who I am! (Moaning) Momma, SAY MY NAME!" (Moaning...) My heart went out to this poor bedbound old lady who had been dying for months, and her daughter, whom I'd never seen before and never did after that, that day taught me a very important lesson about how not to upset my own mother. I will come around to feeling pity for the daughter one day, I hope. 

After that, I made it a point never to address Mom by "Mom", until she called me by name or her conversation indicated that she was aware of me as a family member. I broke that rule as she lay dying, but that's the time for rule-breaking. 

If your mom was happy with the shower/visit/care provided by "her niece", no matter how much that may hurt you in the now, remember that she once loved them so much as to put them on a"being in existence" par with you. Moreover, she is really only thinking of how good YOUR care (provided by who knows who but you were the one giving it in reality) made her feel. I always felt warmth in my heart when my mom felt I'd (whoever I was, perhaps that nice lady who lives nearby) done something pleasing. Perhaps you can learn to accept your mom's love that way. The more love you give, the more you get. Perhaps a cliché, perhaps trite, but it definitely worked for me. 

HeyDforDaughter

Thank you all. Definitely food for thought.  To: MimiMinder, I liked "move on from the moment." and "being right doesn't mean anything when you're dealing with dementia." and thanks for the Improv suggestion. I'll check it out. To: dayn2nite2, I hope to "come to that point of acceptance". Thanks for pointing me in the right direction and To:zauberflote: thank you for reminding me to see it from my mom's perspective, ", she is really only thinking of how good YOUR care (provided by who knows who but you were the one giving it in reality) made her feel." Thank you for taking the time to respond. Your support and words mean the world to me.

EJ97

A few weeks ago during my weekly porch visit with my mom she said "Are you my daughter?"  I have been so involved in her care over the last 5 years that it made me sad for a while. I know it's the disease and it's also Covid because I have only been able to do porch visits once a week, Skype, and window visits. Maybe because I have already experienced such grief that it didn't bother me that much, and I knew that she may remember me at another visit, or not. And, I knew the day may come she would not know me at all. Maybe people with dementia talk about other people from their past because those people are in the past and those memories are much more clear. It sure can be a one way street of giving and sacrifice.

Lawyer34

What a beautiful post

Deanna_M

I understand the "blows to the gut" feeling. Some things hit me hard, other things I am able to let roll off. I think it depends on the day what will affect me! I remember the gut punch watching my mom try to eat chicken with a spoon (she was still pretty high functioning), yet I was not upset the first time she asked me who I was. Go figure.

My mom rarely knows who I am now, but I am convinced she knows that I am someone special. When I visited her a couple of weeks ago, I was fully gowned up, in a mask, gloves, and a face shield. I walked into her room and she brightly introduced herself, telling me her name and asking for mine. I told her.

I was with her for quite a while that day. She was repeatedly trying to get out of her chair and walk around unassisted. I kept trying to redirect and keep her in one place. She was getting really irritated with me, despite her not knowing who I was. She was rolling her eyes, sighing, complaining, etc. 

The funny thing was that the nurse came in, told her to stay in her seat, etc., and wouldn't you know, my mom listened...no grumbling, no irritation, no sighing! 

My point is that even though on one level, she did not know me, she sure was acting like I was her daughter. She was clearly different with the nurse. So, I think, that somehow, somewhere, in her heart, she knew who I was. And, she behaved accordingly.

homecarechandler

I am a professional elder caregiver in chandler and i have alot of stories related to it. But in short it hurts alot to deal with dementia patients but workshops and mental care sessions will make you strong.

Dementia Care Chandler