My 94 yr. old mother is swiftly being eaten up by dementia and I am struggling with the guilt of the dread I unfailingly feel when I head over to visit her. (Usually 2-3 times/week) I never thought I would feel such a thing about my beloved mum. My heart breaks. But I do...I dread my time with her! Time, which should be celebrated & treasured, I am wasting...tarnishing...with dread.

She is currently living in a retirement residence (as opposed to a nursing home where there would be full-time care). She is happy where she is & therefore it is our desire to try & make it possible for her to stay there as long as she can. However, being a retirement leans more on the 'independent' retirement living and therefore we have to be more 'hands on' with her personal care etc. And I am fine with that...but naturally, my mother isn't. She rails against me 'looking after her' & I understand that but it is just so hard to sit across from this woman who used to be so regal & classic, who dressed like out of a magazine, who could have entertained the queen, who I used to be able to have the most wonderful conversations with...and not want to 'fix' her. Clean her up... Have order around her once more... Get her back. It is hard to listen to the crazy stuff that comes out of her mouth... my amazingly intelligent mom... now the classic persona of the 'crazy folk' we all used to smile indulgently about. It is hard to bear the accusations & demands from someone I am looking at but don't recognize anymore... I dread it all...

And then I think...this is my old mother who was/is the most wonderful mother a daughter could have wished for...whom I am still blessed with 'glimpses of' every now & then... whom I can still throw my arms around & pull close. I waste it all with succumbing to that dread...the dread of having to see what dementia has done 'today' with my beloved mom.

Any advice? Anyone? Even just knowing I am not alone...I am not a bad person, would be supportive. In any event...thanks for listening...xo

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My mother who is living independently has no dementia, but has COPD. Everytime I plan on visiting her I get knots in my stomach with feelings of dread. I wish I didn't feel this way, but she tends to be so needy. I never signed up to be her emotional salvation or her entertainment committee. I feel suffocated by her codependency personality. I have had to put up so many barriers to the point I limit my visits to once every two weeks. She is a kind person, but so needy. I am at a point in my life where I do not want anyone relying on me so intensely. How can I get over these feelings of dread and then feeling guilty? Sometimes I envision her just disappearing out of my life. How horrible can I be?

The 'perspectives' expressed here are soooo insightful & invaluable. Thank you so much. And I relate to so much said here...such a relief...such a release! I am beginning to think that it will be a continual 'learning' experience and that there will be times when I might handle things well & right and think (smugly) that I have finally reached the point where I have figured it out, how to be, how to maneuver with unfailing skill thru the dynamics of my mother & that devil dementia. Only to be knocked aside of the head again when I find myself doing the complete opposite...totally losing patience...totally matching her combativeness...totally getting sucked into the crazy back-&-forth stuff that can happen...totally making us both angry & in tears. I'm learning... We are all, it appears here (thank goodness for my heart), learning. And I will never stop learning. I will walk this walks as long as it takes. And ultimately try to learn in particular how to be when I do not handle things 'well' and accept that those times are going to probably always happen now & again. Because I will probably always be learning. And as long as I have my beautiful mother, I will never stop going back for 'lessons'... :)
Thanks again to all of you...for 'walking this walk' with me...with not a word nor hint of judgement! Not easy! And, jeannegibbs, I will check out that book you refer to...thanks for that.

Maybellesgirl, you are experiencing grief for a deep loss. The mother who could entertain the queen is no longer present. The intelligent conversationalist is gone. Bit by bit you are losing the best mother in the world. Who wouldn't grieve? Who wouldn't dread seeing this terrible loss over and over, with new losses added to the pile?

And yet, your mother is physically present. You couldn't live with yourself if you abandoned her, and you can barely live with the grief if you go to her.

Our culture -- all cultures -- have ways of acknowledging and dealing with bereavement. But no one is bringing hot dishes and Jell-o salad, no one is sending sympathy cards and handwritten notes, no one is sharing warm stories of what your mother meant to them. Your bereavement is invisible, but it is very painful. You feel alone because in a very real sense you are alone.

We tend to make allowances for people who recently lost a loved one. No one is making allowances for you -- most importantly you are not cutting yourself some slack. Feeling dread is not pathological in the circumstances. And it is nothing to feel guilty about. Yes, you do want to overcome the feeling and to act in spite of it and it sounds like you are doing that splendidly. Instead of feeling guilt that you feel the dread, feel proud that you overcome it day after day. If your mother were aware of it, she would certainly be proud of you.

I'd like to recommend a very relevant book, by Pauline Boss, called "Loving Someone Who Has Dementia." This educator, researcher, and clinical therapist describes what she calls "Ambiguous Loss." It can be experienced when there is clearly death, but no body to bury, such as with the 9/11 tragedey. Or when there is
absence with no proven death, such as with MIA soldiers. Or when the loved one is both there and not there, due to the deterioration of dementia.

This site and books like the one by Boss help us to see that while we are alone in our bereavement we are not the only ones in this situation, and others do understand. I hope you can find genuine comfort in that.

Oh Maybellsgirl.... I feel like I could have written your question, The dread eats me up inside. I literally take deep breaths and tense up before my daily visits. It is interesting to hear someone else talk about the change in appearance. Sometimes I think I am being shallow... but seeing her like that is so hard. She was put together at all times. I try to help her by offering to get her hair done or help her with her clothes but I dont think she really gets it.
Sometimes she cries because she is so confused and mixed up and other times she is nasty and rude to me because she must be so scared. And yet, I am not always patient and understanding. I try but most days I am just trying to get all the tasks done and get through the visit. I pray all the time for the holy spirit so that I will be more patient and understanding. Most days though, I am just sad, disappointed and frustrated. And full of dread for what will come next.
You are not alone. I understand.

Your support is so appreciated... It really is huge when you truly see that you are not alone... :) I can see that it is probably a combination of acceptance, a degree of detachment even & patience that together would be helpful with my experience as it is now with my mother. It is such a conundrum when it is so stressful and dreaded to be with someone whom you love so dearly. Thanks so much for your thoughts...your support... I do find that it is difficult for people who have not had to 'walk in the shoes' of those of us who have had to deal with that cruel gremlin 'dementia' to understand the dynamics that can unfold amongst the people involved. It is so helpful to find that understanding here...xo

You are not alone at all in your feelings. Dementia transforms a person and also transforms relationships. It is so sad to witness this progression and to feel as you feel, is quite common. You have said your Mother was the best mother a daughter could ask for; hang on to those memories while you are visiting with her - just keep telling yourself it is the disease that is slowly taking over.

My relationship with my Mother is somewhat different than yours, but it is such a challenge everytime I see her to deal with the effects of dementia and to try to differentiate what is dementia related and what is just part of her difficult personality. I so often dread visits and telephone conversations as they so often are extremely uncomfortable and stressful as my mother can "go off" at any given time and I never know what to expect.

Try not to feel guilty about how you feel. You are mourning the loss of the wonderful relationship you had with your mother because dementia is thrown in now and it is so unpredictable. I think it is important to "feel what we feel"; acknowledge those feelings and try to make the best of the situation. The mother you love so dearly is still there, just masked by this disease.

Hugs to you and take care.

I'm in that same boat. My mother is bed-ridden and still at home. Her dear husband (my stepfather) is trying to take care of her because that is what he is 'supposed to do'. He has wonderful help frm home health care and I shop for them and visit regularly. He doesn't see that he is killing himself or just doesn't care. They could wll afford a nh but being depression children they keep saving for their old age.
I go from being a good daughter to being a lazy bitch in the same sentence. I do dread going there because he is so tired and she is out of her mind most of the time.
I'm sad she is this way and I cannot do a thing but show up. I help the whole time I am there but I keep my life too. They have the money to help this situation and just won't spend it. I don't get it but it is what it is. She would hate being this way,
I guess the best thing about all of this for all of us is that we can deal now with how we want our own lives to play out. Makes us plan and let our kids know what we want.
Good luck to us all. It's a hard road for sure. If we were bad people we wouldn't be showing up here every day!

Hi E,
I'd say that nearly all of us have felt what you feel. There is so much grief for us as we watch our parents with dementia decline. When they no longer seem like "themselves." The pain and grief make it very hard to keep up the caregiving, at times. Please don't be hard on yourself. You are a human being in grief.
You are also very smart to recognize the precious moments when your mum shines like her "old self", even if the moment is brief. You'll treasure those moments long after she is gone.
Talk it out on this forum and with other caregivers. If you do, you can lighten your load a little and give up the guilt. You'll do what you can for your mom - and yes, many times dread going - but you'll do it. If you need more help, then please don't feel guilty about that, either. Look into getting the help you need.
Take care of yourself. You are a wonderful daughter!

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