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 residence...it 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
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!
Carol
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!
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.
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.
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.
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.