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

I'm so sorry about your mom, WearyinPit. I'm especially sorry about her suffering at the end. Generally, hospice can take care of that quite well.

Your grief and need for adjustment are normal - something that we all go through to some extent. As was suggested, hospice offers grief counseling for up to 13 months after the death of your loved one. I'd suggest that you take advantage of that.

I've found that I carry my loved ones with me now, in spirit, and often feel them with me, but that took time. I had to grieve first. I also found that the grief pattern varied and often when I felt that I was doing well I could still get hit with a wave of grief.

The coming holidays will be difficult. I lost my dad on December 2. My uncle died over the Christmas holidays. My mom not too long after Christmas (not all the same year). But their deaths colored the holidays and always will to some extent. You'll feel your mom's loss extra hard then, so you'll have to give yourself the gift of understanding.

During this whole process, don't expect too much of yourself. You may want to read this article when you feel better: https://www.agingcare.com/articles/after-caregiving-is-stress-the-new-normal-163252.htm


I'm grateful that you found help through this community. Please keep in touch. You aren't done with caregiving yet. You need to practice self-care now more than ever.
Carol

I use to think the "at least she's not suffering anymore" phrase was so cliche - but that was a few years ago - before watching my mother suffer. My mom didn't have a physical disease like cancer or Parkinson's but dementia was tearing her brain apart. In truth, my mom hadn't been happy since my dad passed four years earlier - they were married 62 years and had a great passion for each other until the day they died. Hard as well, was seeing my mom realize her mind was going and watching her desperately trying to cover it up and deny it was happening. It wasn't too much longer before she really didn't know it was happening any longer but with that came changes that made my mother a complete stranger to me. If mom had been able to see the person she had become she would have hated it. Finally, the stage of not being able to eat hit and I watched my mom waste away to skin and bones. Finally mom passed on August 30, 2016. The death certificate listed "malnutrition" as the primary cause of death - talk about a kick in the gut. And her suffering. My mom lived a full life, she accomplished amazing things - and for most of her 89 years she lived her life on her terms. So yes - I take a great deal of comfort in knowing she is no longer suffering. Mommy and I didn't always get along - but I respected her, I loved her - and I do miss her. Friday's were my written in stone visiting day - in six years I only missed about four. Now I devoted Friday's to moms estate work - but when that's finally finished, I think I'm going to figure out another way to spend Friday's with my mom. Weary - I'm sorry for your loss and at least your mothers suffering is over. I hope that can provide you with a small measure of comfort.

WearyinPit, my heartfelt sympathy to you and your family on the passing of your Mom.

Ah, the "what ifs", we all go through them. My Mom [98] passed in December which was expected, and my Dad [95] a month ago which was sudden, and every now and then I would be questioning myself on how I should have done things differently. Mom was in long-term-care, and Dad was in senior living. But in the long run, the time table for transitioning would have been the same. So I have slowed down on the what ifs.

Trying to wind down from caregiving, be it hands-on and/or logistical [I was logistical] will take some time. I will miss my parents, and I found learning about their medical conditions and what to expect greatly helped me understand each step.

When my Dad passed, I put aside my cellphone [I am not a big cellphone user] as I needed to not hear it ring for awhile. I had seven years of going into panic any time the home phone and/or the cell would ring. And this has worked. I am ready to carry my cell again.

It will take months to forget that last week of seeing your parent in that condition. I rather remember my parents in better times. I was glad both had a very peaceful passing with Hospice.

I am now in talk therapy with a gal who is my age, and had also gone through caring for an elder... thus she really does understand :) My primary doctor has placed me on anti-depressants and something to take the edge off, and that is helping. I finally had to admit to myself I couldn't emotionally get better on my own.

Many years ago, my father died at a ripe old age. I was sad but realized he had enjoyed a good life...Then two weeks after his death, I picked up the phone to call him and I almost started to enter his number and was shocked to realize I could no longer call him. That feeling persisted for awhile and eventually faded. For me, time took time..

Grace + Peace,

Bob

You could reach out to Hospice and ask if you could speak with one of their Chaplains. They understand that families are going through a transition and they are trained to help.

Do you have a church or faith community? If so there is probably someone who could be of assistance. A pastor, someone who has gone through a similar experience and or a small group of some kind.

There are Grief Share (and similar) groups around the country. These are specifically to help people deal with the death of a loved one and find a new normal.

You might also enlist the services of a coach who could walk with you during this time and provide some objective feedback. A good coach does not tell you what to do but does help you clarify your goals, understand your reality, think through your options and make a choice.

[Note: I am a certified coach and ordained clergy. I work with a variety of clients. If I could be of service, please let me know. I do not mean this as an ad as much as helping people be aware that they have options.]

My father passed in August and I am still shocked that the first diagnosis on the death certificate is Alzheimer's Dementia. To some degree I don't feel like anyone got anything right in his care when it comes to diagnosis as Hospice stepped in so quickly. I wanted exact. I wanted absolute answers and you don't get that. The tasks of it are painful. There is a business in death and papers need to be filled out, accounts closed and thank you notes written. I just finished the thank you notes last week and that was a killer. Actually that isn't even true. I have a few more left. I read that in the end we cared and we did the best we could and that has to be enough. This healing will take longer than I thought. I wish peace for you. For both of us. God bless you

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.

My heartfelt sympathies to all of you who have gone before all of us in watching your loved one pass away . We are here to share stories and support for family members who are aging and in our care. So many of the members have parents who suffer from dementia and ALZ and you have witnessed a long and courageous battle. Your thoughts express how horrible it can be( or is) and how 'long" this battle can go on. None of us are prepared to watch our loved ones suffer and after it is over question what we might have done, should have done different.Please tell yourself you did your best.Seek help when needed. Give yourself time and recognize that it is acceptable to move forward. My Mom died instantly at 57. My Dad is 91 and was diagnosed with ALZ 10 years ago. I cannot tell you if one form of death is better than another but I often list and compare what I have witnessed, not only on myself but on them. I only know that , like you, death happens and we cannot stop it. Like you all I will mourn my Dad's passing as I adore him....just like I look skyward every day and tell my Mom I miss her and love her. Hugs and comfort to all of us on this physical, emotional and spiritual journey.

I am still awake in the night expecting to hear the sounds of Dad needing help. I find myself listening for the sounds of the air concentrator.

My major comfort was keeping him home. He was surrounded by family, and the home aide he came to love as family.

I cleared out all him possessions as quickly as I could. Even his bed is gone. I tried to remove anything which would upset Mom, and deal with the aftermath as fast as possible.

One thing which helped....my brother was finally able to come over to visit. (He actually came to get money from Mom...as I learned later). He talked nonstop for 5 straight days. Mom and I both enjoyed the silence when he left!

Yes it is hard to find a new normal, I would think I needed to call my daughter. It is very hard. Friends dragged us off to fishing camp for a week and that helped. Moving to a new house helped a lot. Being in those same rooms was crushing.