My 84 yr old (soon to be 85) mom is now in mid stage dementia, although I don't know that her ALZ has progressed that far. Still, she doesn't want to be here. My stepdad passed 9 years ago and she's been grieving for him ever since. She periodically has vivid dreams of him standing by her bed and telling her he's coming back for her soon. Sometimes she seems frightened by the dreams and other times she seems to be looking forward to it happening. Almost every day she says she's lived too long and/or she's tired of living.

And I ride a roller coaster of emotions. I love her - well, I love who she used to be before these terrible conditions started to remake her. She was vibrant, a bit vain (she was beautiful when she was younger and people still comment how lovely she is for her age), active, involved, secure, confident, smart.... Now about the only one of those adjectives that still fit is vain! LOL. Now, though, she's insecure, staid, reclusive, anxious, depressed, losing grip on reality, losing her ability to take care of herself, losing the desire to take care of herself. In the 7 months since she was officially diagnosed she's mentally, emotionally and physically declined tremendously.

And as for me, within almost the same heartbeat, as I wait for her to wake up in the mornings, I half hope she'll have passed peacefully in her sleep and then am terrified that she did and I've lost her. I worry that I'll grow to resent who she becomes and who I become from burning out as her caregiver. I worry that my daughter's only real memories of her grandparents will be of her Papa declining from Parkinson's during her teen years and her Sasa declining from dementia and ALZ 10 years later.

Tell me I'm not alone. Tell me I'm not horrible for wanting this to end before it gets worse. Tell me it's okay to miss my mom even when she's standing in front of me. Tell me its normal to want to grasp her as tight as possible before she slips further away.

You are not alone. I remember feeling the same way about my mother when she was going downhill. I wanted the stress and exhaustion to be over but that would mean that my mother was gone and that was a painful thought.

You're not horrible either. What you're feeling is natural and a normal part of caring for an ailing parent.

The grieving process often begins before our loved one has died especially when our parent has become a totally different person as a result of disease.

It's normal and natural to want to hang on tight while we still can. A week before my mom died I crawled into her hospital bed and we watched The Wizard of Oz like when I was little. I knew that would be the last time I ever watched that movie because I wanted the last time to be with my mom. I've never watched it since. That was my way of hanging on tight.

Your feelings are natural and nothing you should beat yourself up about. It's painful to watch our parents decline and turn into people we don't recognize and anything thoughts or feelings you have about your mom are normal and most of us have been there.
Helpful Answer (14)
Reply to Eyerishlass

As you can see from the responses, you are definitely not alone or horrible.
I went through similar feelings with my mother 12 years ago, and am now facing the same with my father (93). Dad has had some ministrokes, and his state of dementia deepens with each one.

Believe it or not, it may be good that you see this decline for what it is. When my mother was ill, Dad and I didn't understand what was happening. We kept trying to make her "better", subjecting her to all kinds of treatments and therapy. It was very frustrating for all of us.

Of course it is alright to mourn the personality that is gone. Try to love the one she has become and draw her out. I find Dad gets very chatty when we bring up things he loved, spending time with his older sister, WWII airplanes, and every car he ever owned. It may cheer your mother up to do some "girls" activities like paint nails, or baking.

If you ask your daughter to help you, (or help more), it will serve several purposes.

1. It will break things up for you and Mom. There is a different dynamic when someone else is around. My father is a different person when someone else is in the room. Maybe your daughter can help with "girls days". Try to create some positive memories while you have her.

2. Keeping your daughter shielded from her grandma may lead to her feeling guilty later that she wasn't there for you OR her grandma. (I am neither Catholic or Jewish, but I have enough guilt for ALL religions). Your daughter knows what's going on - give her the opportunity to help lighten your load and spend time with her grandma.

3. It's important for our kids to understand what happens as we age. Show your daughter that even though her personality has changed, she is still your mother and you love her for that.

God bless you for taking care of your parents. Everyone in this position gets their heart ripped out every day. It is normal to be frustrated and fearful and angry and anything else you can feel. Try not to burn out and get a break now and again.
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Reply to flstfrider
kirahfaye Sep 10, 2019
Thank you. Regarding my daughter, she understands my mom's situation more than I do in some ways. My daughter has ASD, mild Tourettes along with other conditions. We actually talked about it some during her therapy today and that was helpful.
No, you are not alone and you are not terrible for having the most normal of feelings that the majority of us are (or have gone) going through, no way!

None of us want our parents to suffer through a horrible illness, not Dementia nor Cancer, or any other horrible disease process and yet most of us here have been there and it is an exhaustive and grueling journey to which we all have to figure out our path, all while trying to do our best by them, and to not lose our families, our jobs and ourselves in the process. In many cases it would be easier on us both if they were to pass quietly in the night, like most of us would wish for for ourselves when it's time.

Your feelings are completely normal, so do come back here for support along the way, we all understand and you will find camaraderie here as you go through this.
Helpful Answer (13)
Reply to staceyb2

You are not alone. You are not wrong or bad. You are decent and achingly human.
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Reply to Ricky27

This is going to sound horrible so I am sorry in advance but as I care for my own parents who are in their mid 80's and are struggling with unimaginable pains and physical decline, for the most part they have very good cognitive abilities still. They are acutely aware of the failings of their bodies and my father struggles to keep from sobbing in frustration when he can not do something that he so easily managed not so long ago.
Aging is a horribly cruel process of nature and while I am HAPPY to be young enough and strong enough to help my parents, it is heartbreaking to see the humiliation when there is incontinence or a stumble and fall. Every day we all wonder is this going to be the last? I have several good friends who lost parents to accidents or sudden unexpected heart attacks while they were still vital and strong. In a way, they are the lucky ones.
The pain of the sudden loss must be terrible, yet the slow and painful day by day decline of one's loved ones seems like a far worse pain to endure.
I hope that I live long enough to care for my parents until they pass. God willing I will be taken before I become unable to care for myself and end up in a home, helpless and slowly fading away...
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Reply to LittleSister68

I call it pre-mourning someone with dementia - it is the reverse of seeing a child grow up & meeting milestone but here they loose milestones - you are not alone as many of us have been there & unfortunately many more to come
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Reply to moecam

No, you are absolutely not alone. I think it is one of the worst things, to see the person you knew slowly fade away. Yet there is this other person, with so many needs. And this new person is almost always more adamant, more insistent and less patient than the person he or she replaced. You lose the relationship. Yet there Mom still is.
I am so sorry. But you aren't alone. And it is normal to wish it might be over for her and for everyone else who is so confused, who is still so without any answers. Try to do something with her that will remind you both of who she is. Make a scrapbook or sit with a pile of pictures and looks at them and talk.
So sorry. No good answers to it.
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Reply to AlvaDeer
Mickey430 Sep 15, 2019
While no one can minimize the emotional avalanche one goes through caring for our aging and diminishing family member. I think the scrap book or photo album is cathartic as we move forward with compassion, love & understanding. I find taking a old memory and sharing pictures is good for everyone. It gives an opportunity to talk about those happier times and envolks good feelings and memories. It has been very helpful for me to put my life now into perspective. Knowing this is only a chapter not the way it always was, or will be. I will write notes even if it's only one paragraph. I have done this on many times. It helps keep my mother engaged and passes the time we spend together. We both take something away and I learn more with each story.
I must say for me it's been going on four years for my mother since her Alzheimer's diagnosis. If I try to look ahead it's a never ending nightmare. Only ending with death which I do not wish for and know there will be nothing to share. So I try to control what I can do to give mom some mental stimulation, jogging old memories that are more memorable. Try to stay in the moment. I don't look back and I don't allow myself to look ahead. I try to keep my life perspective. Try to do something nice for yourself every day. As you must remember while your going through this with your family member you have a duty to yourself to feel some pleasure of living a quality of life and keep a balance. I hope this helps ...Pray and meditation is another tool that I have come to heavily rely on to keep me centered. Take Care of yourself..remember the airline warning! In the event of loss of oxygen in the cabin. The masks will drop down, put your mask on FIRST than apply masks to others. Big Hugs!
You are not horrible.

You are not the only one that has experienced these conflicting feeling.
Helpful Answer (8)
Reply to lizzywho61

Hello kirahfaye, maybe your mom's dreams are preparing her to cross over...(like my friend Lucy's vivid dreams of her hubby) that preceded her passing away a few months later.
Also, your willingness to 'let her go' cud be your intuition, which is preparing you also.
(I felt 'different' in the few months prior to my mother's passing, & she became very quiet.) I was relieved for her, when she passed...cuz her years of pain were ended. It's ok to feel what u feel, & not condemn urself for it. Lots of mixed emotions, now (& after) are normal.
✌ to you & mom.
Helpful Answer (8)
Reply to Tiger55

I'm also watching as my wife fades away. She made it clear she did not want to live past Stage @ AZ, and I said I would help her die if I could, but as you no doubt know, my taking an active role bringing about her death would be murder. So, she lives on. I am not taking care of her. She is in a nice memory care place. But I do go see her almost every day, often spending the night. I have her medical power of attorney and I've instructed her doctor not only to not resuscitate, like a common DNR, but not to treat infections, like UTIs. This may help her along her way. I do have to say that I scoffed at writers who said she would become delightful, like a child, and my love for her would deepen as we go through this stinking mess together. But they were right. She is not who she used to be, and I miss that person terribly, but I love her as she is.
Helpful Answer (8)
Reply to Jvaholmes
jczac44 Sep 14, 2019
I agree on the DNR but do not on not treating infections. I couldn't allow my Mom to be in pain and UTIs are very painful! If the good Lord is going to take her, let it not be in a painful manner. I'm sorry, but it just seems cruel. I cared for my Mom for 8 years.
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