Mom lost her battle with dementia. How do I find a new normal?

My Mom died, quite suddenly....going downhill within a week's time, 2 1/2 years ago. I still grieve her being gone. She lived with us for the last 3 years of her life. In fact we built our house to accommodate her having her own suite of rooms. Mom and I did everything together, as she became more like my little kid who I couldn't leave alone. Although she had coronary issues, she was in relatively good health in spite of dementia. She was sweet and good-natured. We laughed so much together. She would often laugh at the silly things that came out of her mouth...such as look at those ducks playing (when they were dogs playing) and we would all laugh with her. There were hard times, as well, such as her not recognizing the difference between night and day towards the end. If she awakened in the middle of the night, she would head out to the main part of the house calling " HELLO?? Where is everybody?" This would happen sometimes two or three times in the night, and I would bolt out of bed to get her back to bed, explaining that when it was dark and all was quiet, it was not time to get up. Of course she didn't remember that the next time. There were trying AND tiring issues, but it was all worth it to have her live with us until the end. However, the end came quite abruptly, and as I saw her going downhill right at the end (the last two weeks) we embarked on visits to the doctor, and visits to the ER, and no answers were there as to what was happening to cause her pain and distress. I asked for Hospice, as I knew that Hospice would do their own evaluation and determine if she was eligible for their care, and if necessary, they would ensure that she didn't die in pain and distress. Her doctor insisted she was fine, and merely going through an agitated state of dementia. He even made a house call the night before Mom died, and again insisted she was fine. (she really did rally in front of him and seemed quite fine when he was there.) Her doc said she just needed some sleep, and prescribed a drug that he said would help her get a good long rest. The next morning, after a very disruptive and disturbing night of anxiety, pain, and stress, I gave Mom this pill after she had her tea. She did NOT go peacefully to sleep to get that long rest the doctor had ordered. She was extremely agitated, and acted as though she wanted to flee, yet she couldn't even stand on her legs at that point. Again I called the doctor, who said he would stop by at the end of his patient care. My dear Mom died, with myself, my husband, and three dear friends all there to try and comfort her. But I still agonize over the memories of those final hours. I will never forget that scene, and what I should've, could've, would've done, had I not been blindly listening to her doctor, who (as it turned out) didn't know what the heck he was talking about. I should've followed my own instincts, as I knew her better than anyone. Alas, it's all said and done. But I'm the one who is often tortured by that end. I lost my Mother, my best friend, and my sweet child....all three in one lovely person, who I miss every single day of my life. Moving on, and accepting reality is just something we all have to do, but there is a lingering empty void where your loved one once was, and that is just the reality as well. A part of me is gone now too. I wish you all the very best and extend to you my empathy and my sympathy in your loss. (Everyone deals in different ways, too. My experience is just MY experience.) Hugs to you!!

I am so sorry for your loss and your pain. Know that your mom is in a better place. Now it is time for you and not doubt she would want you to take care of yourself now. Guilt is a terrible companion. Institutionalizing a loved one is a personal guilt trip no matter what - but know you didn't have a choice and you did the best you could. Rest with that. As for coping, when my Dad passed away after a 5 year battle, not only was he gone, but a chunk of my life was now void. It was hard to remember when the phone rang that I no longer had to jump with fear. My instinct to pick things up for him at the store and realizing he was no longer there was crushing. Now I have it with my mom who is 94 and suffering dementia and infections that clear and come back. I have her home with aides and I am there constantly, but that still doesn't alleviate the worry, fear and time commitment and always wondering the irrational "Is there something more I should be doing?" As far as what to do with yourself? Take care of yourself! Grief counseling and support groups are a good way. Do you belong to a church, and if not, maybe this is a good time. There a bereavement ministries that help folks get through and they offer services and rituals that help to concretize the experience and the movement through grief. The other thing is to fill some of that time with something rewarding., You were used to helping your mom, you can help someone else. Volunteering your time at something that is meaningful to you helps to take your thoughts out of yourself and grief and channel them towards others and the fullfillment of still helping others. You can pray and your mom will companion you on your journey. The thing about church is you can do these things and still cry and folks understand and are consoling. Actually, most people you encounter volunteering will understand - the nature of volunteering is giving. The person who gives of their time and selves receives back heaps in many ways, and the folks who volunteer with you will not doubt have great big hearts. After Dad died, I went the route of volunteering, it helped me immeasurably, and changed my life. I have actually become a better daughter and caregiver to my now failing mother because of it. Good luck, peace to you and God bless you. I have to run to mom now :)

Dear WearyinPit,
My deepest condolences to you and your family.
I have lost 3 close family members in the last 18 months. I cared for all of them. Two with Alzheimer's and one with lung cancer. The youngest was 58, the oldest 97.
The last one passed on New Years Eve 2015. The grief process started when the first one passed. Then I was grieving for two and then for three all at the same time. I was paralyzed by depression and "what if" questions. Had I done enough? Made the best decisions? Did I have the right to feel overwhelmed and totally exhausted physically and emotionally? My own health was very poor because I had not taken care of myself over the course of nine long and agonizing years.
For months I sat on my sofa and couldn't handle the smallest tasks that I needed to do to survive. So I prayed and prayed and prayed until I thought surely God was tired of listening to me. Oh, the things I learned were immeasurable and the blessings God sent to me were life lessons that changed my life. Don't get me wrong - I still have some pretty rough days and know there are many still ahead. But through my sadness God taught me how to forgive, how to be grateful, how to let go of bitterness and most importantly how to live in each moment without living in the past or worrying about the future. God showed me that I HAD been good enough, that I had done my very best and that it is now MY time to start living again and it is ok to laugh and sing and dance again if I choose to do so. Life sucks sometimes. But struggles are put in our paths for a reason and to teach us things we need to know. Struggles make us stronger and hopefully wiser. Grief is hard. Very hard - but it is an inevitable part of the cycle of life. I pray daily for all the caregivers of the world. Some of us can do it . . . Others not so much. Take comfort in knowing you had the capacity to do all that you did. No regrets. Time is the greatest healer. It just takes time. In time the vivid memories of the suffering our loved ones endured will fade and be replaced with memories of the good times when they were healthy and cognizant and joyful. Whatever method you choose to get from point A to B and beyond is up to you but know that God wants you to be happy again when the grieving is done. Time and God will heal the pain you are experiencing at this point in your life. I wish you the very best and will keep you and all the other posters that have replied to you in my prayers. I hope some of you will do the same for me.

So many sad yet comforting stories. W P, I'm sorry for you loss. Stay strong.

My condolences to you. I have been wondering how I too will make the adjustment when my Mom is gone. Even though our relationship has changed and I can't discuss things with her the way I use to or tell her what is going on in my life, I can still hold her hand, we can have an laugh, I can feed her and pick out pretty sweaters for her to wear. I do know that when she is gone I will always have many great memories and have her in my heart. Treat yourself kindly and take all the time that you need for healing. This is your journey, best of luck in your transition. All we can do is make the best of it.

I am very sorry for the loss of your mother. My father died October 1st at home with hospice care. He also had dementia with other health issues. It is hard not to be crying all the time. 

I am trying to to find a new me. I am trying to take small steps. I went out to dinner Sunday night with my family. Before my father had dementia he would take all of us out for Sunday dinners. 

The hospice grief counselor called me this morning. They are sending me a list of grief meetings in my area. I want to do that. I have heard people say that they wished that they had grief counseling.

I am taking one day at a time, which I also did when I was my dad's primary caregiver. 

WearyinPit

I'm so sorry for your loss. You can take comfort in knowing she is at peace and not in pain anymore. Pennies from heaven is very real; they're a way to let you know your mom is allright.

My mom is 85 she was in good health some short-term memory issues but she fell three times in the last year breaking her shoulder and wrist, now leg. I told her I'd never put her in a home but I feel I have to and it's killing me. Short term memory keeps getting worse and I'm afraid it's cuz she's in the nursing home versus at home. I keep seeing these stories of parents that die because they're in a home and questioning what I'm doing. But I'm so afraid to bring her home I don't feel its safe.

All of your stories are so poignant and sad. This sharing of experiences is very helpful to me. Especially stories from people who really loved their parents. I have read so many other threads on AC where people seem to resent and I have to say in some cases even hate their parents. To hear the love a lot of you felt and still feel for your dear, departed parents soothes my soul.

It's been about a year and a half since my Mom passed and I still haven't found my new normal. In fact, it's when I am doing something that used to be normal for me when Mom was still alive that I miss her the most because the lack of her presence in that moment makes it feel weird and empty. For instance, she and I used to walk to the mall near here and spend the day prowling around and having coffees etc. The other day I walked there by myself which I've done since she died but I usually take a different route than I did when I went with her. This time I went the old way and I could imagine her voice in my head the whole way. All the things that she would say at different points along the route. I appreciated all the fall colors along the way and took pictures with my phone. Which is something I normally wouldn't do but my Mom always appreciated the beauty around her so maybe she was there somewhere influencing me.

Dear WearyinPit, Please know that all of us here send you our thoughts and prayers and our sorrow at your loss. Grief is a terrible weight on the heart and you must be gentle with yourself and allow yourself to feel the depth of your loss. There is an old saying: "Time heals all wounds." It is true. Gradually, hour by hour, day by day, you will make the journey through your grief and you will come out in the end whole and rich with the cherished memories of your mom. Please remember that, although it is your journey, you do not have to make it alone. Reach out to the people who care for you and those that are there to help. And don't be ashamed of your need. We have all been touched by grief and we all understand. May God bless you now and always...

So,So sorry for your loss. I am sitting here @ 3:30 watching my 89 yr old mother sleeping balling my eyes out from all of your stories. I will be moving her to assisted living in 4 days. She also has dementia and going down fast. I have lived w/her for the past 7wk and so it will be the hardest for her because she has counted on me if I leave to do an errand She calls because she gets so afraid and scared. She is on lexapro and I'm not a nurse but deep down inside I don't feel it is doing anything for her and I know you can not stop this at once needs to be gradual. Does anybody have any advice? It would very much be appreciated and god bless

Summer, how long has mom been on lexapro? It takes at least two weeks to start to have any effect, and often more than 4 weeks to really kick in.

Have you talked to her prescibing doctor about the continuation of her symtoms of agitation and fearfulness? Some dementia patients need a combo of meds to address these symptoms. My mom is currently on Lexapro, Remeron and klonopin. So far, it's a combo that keeps her calm and not doped up at all.

Much sympathy and compassion for your loss, and to others. It took me 3 to 6 months or more for my 1st husband's death to sink in and be accepted. My body kept expecting him to call, or come back from a trip. I even bought newspapers he liked, and was in the car again when I remembered he was dead. and cried again.
There's lots of great sharing in your responses. A grief group helped me, as well as friends who could go with me to do the details of closing an account, picking a gravestone, etc. I also found I needed meds for depression for awhile. Hugs and prayers to you, and take as much time as you need.

WearyinPit, to add to my earlier post, I am finding my old self is slowly coming back. I never thought that just getting a hair cut... it's been over a year... would make a difference. When I was caring for my parents, making appointments for myself were always being cancelled because of more important things needed to be done.

Apparently the haircut gave me something new to focus on :) I've been going to the same stylist for 30 years so we both know each others background, so there we were talking about elderly parents [his parents had also passed] and talk politics. It was a fun afternoon. Expensive but well worth it.

My condolences for your loss. My husband died unexptedly and when told he was unable to speak 3 days after so commuication was nil.
I was in disbelief when he passed
And it was difficult to pick up the pieces. However one morning i woke up and felt like I was going to live.
Now 7 yrs later I am able to carry on..

I always find my comfort in God. He will provide the necessary strength to deal with death, Just rely on him. Read his word.

Amen

Weary, it will take as long as it takes. Sounds like a non-sequiter, but that is the common thread among everyone's individual journeys. Don't beat yourself up if you aren't progressing at the rate you think you should. (Or someone else thinks you should.)

"Fake it til you make it" comes in handy. I must put on a False Normal at work. If I didn't, I'd be out if a job by now. Summoning up the False Normal comes in handy at home and with friends, too. Your loved ones understand....but only up to a certain point. Regulating when I allow myself to be a basket case helps me advance through this murky, unpredictable mental maze.

So much baggage. So much woulda-shoulda-coulda. I spent the past few years immersed in being a hands-on helper, a vigilant observer, a voice of reason. And an intrepid researcher who was always plotting 3 or 4 steps ahead. The phrase "racing thoughts" comes to mind. A lot.

And it was all in service to......an inevitable death. The nasty truth of caregiving. Yours, mine and everyone else's.

"Loss" encompasses so more than the loss of the loved one. In return, our grief defies timetables, tidy definitions and outward signs of improvement.

You're already doing the new normal by being a volunteer on here!

I find it helpful to picture my loved one in a wonderful place now. The spirit is eternal. No pain, no lack of abilities, and now they are with loved ones who have gone on before.
"I have made death a messenger of joy, wherefore dost thou grieve?"
is one of the most challenging teachings on this that I have encountered. Like everyone else contributing my first reaction usually is to grieve. But when I watched my friend whose mind was shutting down, her passing became a relief because this brilliant lady was now free to be herself again in the spirit world. And as I go through all her things, I learn more and more about her and appreciate her more and more. Sometimes it feels as though she is with me as I work in her condo and it makes me smile.

JohnnyJ… That's exactly what I feel about my mom! ❤️

I am in the same boat as you. My mother passed away on November 23 after a long battle with Alzheimer's Disease. I cared for throughout her illness. I am lost and heartbroken. It helps to surround yourself with family and good friends especially ones who are good listeners. If you're grief persists you might consider joining a grief support group or seeing a psychotherapist who specializes in grief counselling. But most of all, be kind and gentle to yourself. We have been wounded deeply. We need time to heal.Godspeed.

Yes arniethek1, I feel that same pain as You, since Mother passed away on June 21 this year. Mam had Alzheimer's and I was with Her every day of that journey. I felt so empty and lost, and heartbroken when Mam died. The void and the silence nearly killed Me. For the first time ever I could hear the battery clock in the kitchen ticking, and Mother was not noisy. I just never heard that sound before.
I am healing thank God, as I've come a long way. Life will never be the same, since We will have to start again, and turn the page and begin a new Chapter of Our own Life, but Life goes on and We will come through it. People always do.

first of all...soooo sorry for your loss!! i have just gone thru my loss also. i have kept very busy...upgrading property...painting, fixing things, organizing....everything i couldn't do while my mother was alive...cause i had no time! im getting ready to get back to the gym and start taking care of my health...body and mind! i needed time to unravel...and still in the process....and in another month or two...a nice vacation!!! maybe a cruise...everything is done for ME!! what a concept. good luck ... take time...stay busy!

Be very patient now with yourself. You have just given a priceless gift to your mom.
Remember that. Take each day slowly...it takes time for your body,mind,soul to readjust. You have been on High Alert...and now,that situation is gone.It took me over a year to re-adjust.Go for a walk;library;call a friend etc. My deep condolences and prayers are with you.

Sometimes I think I'm still living out of state taking care of my late mother. I don't linger in that unthought very long, though. I try to think of the good times my family had with mother. Memories are good, but dwelling on the areas of self doubt are not conducive to forward thinking.