Follow
Share

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.

This question has been closed for answers. Ask a New Question.

116 Answers

Most
Helpful Newest
First Oldest
First
1 2 3 4
This is one scary disease that seems to have no rhyme or reason.

All I can say is that today is all that really matters, yesterday is gone, tomorrow is unknown. Hold her close, love her and be happy for today!

As for caretaker burnout, this is a real thing, the caretaker can be robbed of their life. I could never take care of a LO in my home, I am not qualified, but I will make sure that they are properly cared for somewhere else. Either way, it is a difficult situation and will have an affect on the caretaker.

I wish you the best!
Helpful Answer (6)
Report
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 (17)
Report
I feel all the exact same conflicting emotions. I care for both my parents in my home. I miss who they used to be and resent who they are now. I remind myself they would never have treated my this way in their former years and I know they are ready to die. It's extremely painful to watch them slowly slowly fade away. I'm trying to make the best of the time they are here while wishing they both will go without suffering. You are not alone and seeing our loved ones to their end is one of the most challenging things life can throw at us. {{{hugs}}} to you
Helpful Answer (6)
Report
You're not alone. You're not horrible for wanting this to end before it gets worse. I hope it's okay to miss a parent even when they're standing right in front of you... I feel the same right now with my father. I'm constantly torn between wanting to turn back time, for him to choose differently and stop this decline, and wanting this to not be anymore, one way or the other. I read an article about Elisabeth Kubler-Ross' 7 Stages of Grief and... I'm already so far into the stages of grieving. It was stunning, heartbreaking, and somehow an incredible relief.

You're not alone.
Helpful Answer (8)
Report
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.
Helpful Answer (14)
Report
kirahfaye avatar
K
kirahfaye Sep 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.
(4)
Report
No, you're not alone. 🤗
Helpful Answer (5)
Report
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.
Helpful Answer (8)
Report
M
Mickey430 Sep 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!
(1)
Report
You are not horrible.

You are not the only one that has experienced these conflicting feeling.
Helpful Answer (8)
Report
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 (14)
Report
You are not alone...going through it right now...it is all so confusing and lonely...no one in the real world understands what it is like...but we do!
Helpful Answer (6)
Report
I have a whole bunch of old black and white photos, and since all our elders past, we don't know who some of these people are :(

So, if you have old photos around, do ask mom while she can think of who they are, sing with her, be happy, play music.
my daughter lost all 3 grandparents before she was 15 years old, watched all the stages of cancer and ALZ. My dad went years before, so she didn't have to go through that one. But it is sad, and it is hard, and it is life....
As her grandma would say, "This too Shall Pass."
Another friend's dad would say, you have to be tough to get old.
They were right.
HANG IN THERE. It's the roller coaster of life. Enjoy them while they are here, and do hug mom, and do remember the good ole days. I am trying to, but I forget some stuff. I can hear her laugh sometimes. What a wonderful laugh..
Helpful Answer (3)
Report
It is so hard when it is your parents, watching them become so helpless and harder to manage than your children ever were. Very upsetting, this role reversal. I think it is not as hard for them to be in this other state of mind. It looks to me sometimes they have gone back to childhood, when life was more simple. That is not a bad place to be, if that is true. Of course they do not look at all like children but I found it easier to think of them that way. If they see us getting upset and impatient they tend to get upset. It seems like they are a different person to us yet they are unaware of it. In Iate stage they may not know who we are. What bothers me is the awareness that I could become like that one day. How would I want to be treated? Life has a cuel side. It is easier to take care of someone who isn't your parent, I think. You have lost your parent when they reach this stage and who can you turn to? Maybe it is easier for the grandchildren because they still have parents and their connection to grandparents is different.
Helpful Answer (3)
Report
Hugs. You are not alone, you are not horrible, it is logical to miss someone whose real self is already fading from view, and it is normal to want to keep someone who is so precious to you.

Unfortunately - those reassurances do not make anything better or easier.

Is there any satisfaction you can gain from the small, mundane things you can still do for her that make little differences, day to day? I know thinking of those - e.g. her breakfast tray layout, her clean bedding, but not the flowers which turned into a whole drama on their own 🙄- make little sparkles of "not completely and hopelessly dreadful from start to finish, then" for me.
Helpful Answer (3)
Report
I appreciate the replies. I'm not aware of any other family members, on either side, who had either dementia or ALZ so I have no reference as we go through this together. I tend to keep things inside. I don't want to lay any of this on my daughter (she has enough to deal with) and I worry about dumping it all on my husband after he's had a long day of work. Having an outlet like this forum is really helpful.
Helpful Answer (7)
Report
Zdarov avatar
Z
Zdarov Sep 2019
kirah, check the Alzheimers Association website for a chapter near you, they have support group meetings. There’s another place, in person, you can help release and share (vs. ‘dump,’ we understand!) some of these feelings. I’m there too, ((hug))
(1)
Report
Absolutely you are not horrible.  It is heart-wrenching to watch your mom disappearing slowly before your eyes.  I am going through the exact same thing right now with my Mom, who is 92.  She has declined terribly in the since my Dad passed, and has been living with us since.  Sometimes I feel that nothing I do even matters; I go from doing endless loads of laundry, throwing uneaten meals away, cleaning up messes and trying to make it through another day while she sleeps endlessly.  It is a rollercoaster of emotions daily, full of extremes from one day to the next, and sometimes I think there is no quality of life left for her; then she has a burst of two or three great days in a row and I see my Mom as she truly was, which make me think otherwise.  There is no rhyme or reason for the extremes in behavior, we have overthought it to the point of craziness.  It's not meds, diet, exercise, interaction, activity, it's just one day at a time.  Caregiving for a parent or loved one is one of the most difficult things you will ever do.  I am at the point where I can't get myself in an uproar over what I cannot change, I treasure the moments when my real Mom emerges and we spend an afternoon looking at family photos and sharing memories and enjoying time together.  I try to find things that bring her joy, make her eyes sparkle, and bring a smile to her face. The other days I try to get through without stressing or overthinking what the underlying issues are.  We are dealing with a life process that is happening, whether we like it or not, and for which we have absolutely no control.  Hopefully this helps in some way.  You are not alone in this journey.
Helpful Answer (4)
Report
Kirahfaye, absolutely you are not horrible.  It is heart-wrenching to watch your mom disappearing slowly before your eyes.  I am going through the exact same thing right now with my Mom, who is 92.  She has declined terribly in the since my Dad passed, and has been living with us since.  Sometimes I feel that nothing I do even matters; I go from doing endless loads of laundry, throwing uneaten meals away, cleaning up messes and trying to make it through another day while she sleeps endlessly.  It is a rollercoaster of emotions daily, full of extremes from one day to the next, and sometimes I think there is no quality of life left for her; then she has a burst of two or three great days in a row and I see my Mom as she truly was, which make me think otherwise.  There is no rhyme or reason for the extremes in behavior, we have overthought it to the point of craziness.  It's not meds, diet, exercise, interaction, activity, it's just one day at a time.  Caregiving for a parent or loved one is one of the most difficult things you will ever do.  I am at the point where I can't get myself in an uproar over what I cannot change, I treasure the moments when my real Mom emerges and we spend an afternoon looking at family photos and sharing memories and enjoying time together.  I try to find things that bring her joy, make her eyes sparkle, and bring a smile to her face. The other days I try to get through without stressing or overthinking what the underlying issues are.  We are dealing with a life process that is happening, whether we like it or not, and for which we have absolutely no control.  Hopefully this helps in some way.  You are not alone in this journey.
Helpful Answer (8)
Report
You are not alone. You are not wrong or bad. You are decent and achingly human.
Helpful Answer (9)
Report
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)
Report
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...
Helpful Answer (10)
Report
Sweetie, all those feelings are normal. When, my dad was failing, as strong & vibrant as he was, I couldn't handle seeing him on a respirator. It ripped my heart right out of my body, so I couldn't see him very much. I felt terrible, but the roller coaster ride I was on, I just couldn't handle it. When, he died, I felt so unbearably lost & still do 27 years later. Try to observe, but do not absorb. Your feeling are all scrambled, but understandably so. Don't be so hard on yourself. Get enough rest & eat well. You will need your strength.
Helpful Answer (4)
Report
I can't imagine all your going through with her having Alzheimer's disease. It must be so painful. You are definitely not alone. I have watched my mom slowly fade away too from lung disease and Parkinson's. I also hope its a peaceful homecoming. Very difficult to miss someone, who is still present but not how you remember them. I choose to leave it in God's plans and know his path for us has been outlined from day one. You aren't alone at all!! We are here for you anytime you want to talk or vent. Hugs and prayers. Kelly😇
Helpful Answer (2)
Report
I experience the same exact conflict of missing the person my mom once was and hoping for her misery to end. Don’t feel guilty. What you’re experiencing has been the normal course for those of us going through the same cycle of dementia. It’s a slow death and very difficult to watch and experience. I wonder if any books exist to comfort those of us going through this.
Helpful Answer (2)
Report
Dear Kerahfaye...no you are not alone my friend. It’s not wrong at all to feel the way you do. I’m caretaker for my husband since 2013. He is DX with ALS. He also has prostate problems and type 2 diabetes. I watch him everyday get worse, everyday little by little and I feel exactly like you. It’s breaking my heart. And I pray that he would just go in his sleep to heaven. And I also took care of mom who did have ALS. I do not feel resentful but grateful for the time I had with her. She is an angel now and at peace at last. Hugs for you my friend.
Helpful Answer (2)
Report
My mom suffered symptomatic Alzheimer's for 10 years. Five years ago she started wandering out of the house requiring 24-hour supervision and only recently she became bedridden. I have to do everything for her. My mom is practically brain dead from Alzheimer's and cannot even say anything, kept alive with a feeding tube.

By the way if you withhold feeding and fluids, it can take 2 to 3 weeks to die of dehydration and that includes hospice giving comfort narcotics. They cannot overdose as that is assisted suicide and they can get in a lot of trouble doing that. There is nothing "peaceful" about dying this way--it's very ugly and monstrous. Mom has no cancer, so withholding fluids just because she forgot how to swallow I think is very cruel and horrible way to die.

Trust me it's going to get far, far, far worse and this can last for years and years and years. I have no words of comfort other than this is reality so if you can't deal with that -- perhaps you should start thinking about nursing home placement.
Helpful Answer (3)
Report
I feel the same way with Dad's dementia. Not the worst case but bad short term memory and when he eats things or moves items he is blaming others that food items missing. He is always hiding things, etc. Very draining.

I tell people I'd rather he have cancer and working that issue and have his mind. I am mentally prepared and hope he goes peacefully in his sleep but no guarantees. He is receiving palliative care which is part of hospice. Nurse comes every 4 weeks just to check on him so I am already connected if needing hospice.

Do the best you can, one day at a time and even though an eventual loss there will be peace on both sides. Your thoughts are very normal. Try to take care of yourself with some time to you, possible exercise and venting with friends/family. Having this forum is AWESOME!
Helpful Answer (3)
Report
You are not alone, and all of what you are hoping and feeling is completely and utterly normal.
Helpful Answer (2)
Report
I was about where you are now when I was 26 and my beloved Mom, who was also my best friend at that time, was diagnosed with Ovarian Cancer, back in rather primitive treatment times. She was given up to 10 years if the chemo kept it from metastisizing, but she died unexpectedly after 6 1/2 months of a heart attack at age 57 1/2. Each morning after her diagnosis, I'd take a shower and pretend to try to live as if she'd already died. I actually helped me when the tragedy came, and I immediately and occasionally continue to give thanks that she was in the hospital and had the sudden heart attack - the nurse told me she didn't suffer, from the expression on her face. It's hell on the loved ones, no matter what, but bless you for wanting your mom's passing peaceful and pain free if possible. You are normal and thoughtful. God be with you.
Helpful Answer (2)
Report
I’m my Mom’s caretaker and I too miss the woman she use to be. When you saw me the majority of the time you saw her. We did road trips, cruises, flew together, shopped together, etc. and now it’s a chore just to get her to go outside. Her style was envied and she loved to show off her wardrobe. Now I have to make sure she changes into clean clothes. She will wear the same outfit (I know 3 days) if it’s not removed from her closet. I put her in the shower 2 xs a week and she will wash at the sink the other days. The hard part about this is I have to watch and make sure she wash.
When I do finally convince her to going out I’m so drained by the time we return that I now regret having to take her out. I have to place her in the back seat with the child’s lock on the door because she fumbles with everything she can reach when I let her ride in the front seat. (Very distracting)
I wrote all this to let you know that you aren’t alone. Dementia is a horrible disease and it takes Beautiful people and leave a shell of a person. I so miss my beautiful Mom but I thank God that I have our memories. I love the woman that she is now but I still miss the woman she use to be. This is my first time “voicing” this. Tears
Helpful Answer (6)
Report
The sign she is getting Here, Dear, The End is Near. You my, Yes, Find her "Gone" One morning But being the angel you Are so Far, Tells me you Want her by Your side. There is only One thing I can Truly say about This, It won't Be Bliss when Mom is no longer There in Your Care. Make the Most Out of it Now Somehow. God Bless.
Helpful Answer (1)
Report
I feel the same way. Grieving starts with the diagnosis. Some days are up, some are down. I just want my Mom to pass in peace. Hospice care helps, I recently added it to my Mom's care. I didn't realize its not just for when a person is on their death bed. Plus they have caregiver support.
Helpful Answer (1)
Report
1 2 3 4
This question has been closed for answers. Ask a New Question.

Recent Questions


Popular Questions


Related Questions

Ask a Question
Subscribe to
Our Newsletter