Children of parent's who have died from Alzheimer's

Marianj4438

I have been the caregiver for my mother for the last 16 years. This August she died from the disease. I have not been able to find a single book or group about this and find it very frustrating. I thought since I grieved the loss of my mother for the 16 years that her death would be easier. Stupid I know....this is hard as hell. My sister also helped me with my mother but now she barely speaks to me and is in her own world of grief so I no longer have my "person" to talk over feelings with who "gets it." My husband told me last night that I need to just suck it up and move on...It has only been two months...I don't know how to do any of this without the support of my people so want to find others who are in this situation or have been and can give me advice. My father died when I was 21 so 25 years ago and I thought I knew all about grief but it turns out I know nothing. Are there any groups out there for caregivers of parents with Alzheimer's who have lost their parent to the disease in death???

Jeanne C.

I'm sorry for your loss. No one should tell you how or when to grieve. And I truly hope you and your sister find your way back to each other soon.

You can try your local Alzheimer's Association chapter for resources: https://www.alz.org/local_resources/find_your_local_chapter

I also found this book by a hospice chaplain. I haven't read it but it is well-reviewed: https://a.co/d/44Vcr0J

You may also want to reach out to your doctor for a therapist referral.

I'll keep you in my thoughts.

mommyandme (m&m)

Im so sorry for the loss of your dear mother! It will be a year in December that I lost my mom and it’s still hard. I was her primary caregiver for 2.5 years after moving her to my state. It took me 6 mos to move out of her home and back to my own. I still have much to sort through, but I do have her cat, yay? Yesterday, my husband and I had our first big family gathering at my home since moms passing… I have to say that using her cookware and her handwritten recipes was lovely and made me quite happy, a feeling I haven’t associated with her memory for quite some time. I’ll take happy tears anytime.

This all takes time. Please be kind to yourself, be patient with yourself. “We have to go through the grief to get through it”, which I find cumbersome. We will always miss our LOs unfortunately. I hope you find a support group that works, I haven’t…mainly because I’ve been having a hard time getting back out into the world. And it goes on…

NC Girl 23

Dear Marian: I am so very sorry for losses—not only for your dear mother but for the relationships with those left behind. As others have said, grieving is an individual trial and journey. We all have our way of coping with all the changes and struggles. I pray that those relationships will soon once again be strong and fulfilling

My Mama passed away in October of 2020 after 3 weeks at home following a stroke, and I still ache for her every single day. My Daddy had been diagnosed with “early” Alzheimer’s about 5 years earlier and had refused to take medication. We didn’t realize how much of his disease that she was “managing” and keeping from us. My husband and I saw them every day and saw the signs but didn’t realize how fast it was progressing until Mama passed away. The grief overtook him, and he had a very significant stroke in Christmas Day in 2020. I took early retirement to take care of him 24/7, taking him to PT and working through therapy to get him to walk and function as much as possible. Seeing the residual dementia from the stroke and the Alzheimer’s take over his body and mind was devastating.

We live right behind their house, and after six months, I starting staying at home at night to give him some sense of independence, having motion detectors and cameras to allow for some oversight. Things progressed so quickly, and the difficult days far outweighed the good days.

He passed away in March of this year with the primary cause of death of Alzheimer’s. Seeing that in writing was overwhelming. It still washes over me quite often. I am fortunate that my husband is supportive, but there is no one that can feel our pain unless they have dealt with that personal and intimate situation with Alzheimer’s. His parents are both deceased from medical issues, he only dealt with Alzheimer’s through my Daddy, and he wasn't as close to his parents, so he still doesn’t understand all the nuances of the losses of my dear parents. Some days are so much worse than others.

We are trying to clean out their house and outbuildings, working six days a week to go through the “stuff” and accumulations of their 63 years of marriage. We just can’t leave the house to fall into further disrepair (he was adamant after Mama passed away that nothing change). There are days that I come here to this forum to find some sort of solace from the pain and sorrow. I pray that you too will find respite here. Sometimes it’s so hard and some days are never ending, but I am starting to have fond memories overshadow some of the difficult ones. The holidays will be even more difficult this year, but I’m praying that my wonderful memories of Mama and Daddy through the good years before all the changes brought by life’s challenges will fill the season with peace and hope for us all. Take care, my friend.

lunamossgirl

https://alzconnected.org/discussion/66801/children-of-parents-who-have-died-from-alzheimers

My mom is in final stages and it's excruciating.

I cry, it's just what comes out if I'm sad, upset, angry.. last night my brother told me I needed to quit crying and be strong because that's what mom needs.

I literally was helping mom sit up in the hospital bed because she was restless and seemed to need to change positions. When I got her seated I was rubbing her back and hips and asked her if that was better. She said yes and was hugging me a bit , it made me cry a little, not crazy or anything but I cried. That's when he bitched at me and proceeded to tell the hospice nurse who had literally just got thete that I was being to emotional. And then the freaking nurse said something to me.

It was awful and brother and I got into an argument that culminated with him telling me to get the f off his property.

After I left he called my dad and wanted me to return.Basically so he and his SO could sleep and have me stay there with mom to watch her at nnight. which I have done both nights this weekend with 3 hours sleep between.

It's all so frustrating

Marianj4438

https://alzconnected.org/discussion/comment/186373#Comment_186373

Thank you for the suggestion I actually did get that book (before I saw your comment) and unfortunately it was completely awful. I hope it helps someone else but it definitely wasn’t me. Thanks for the thoughts. Sending you love and light,

Marianj4438

https://alzconnected.org/discussion/comment/186543#Comment_186543

Bless your heart. Thank you so much for pouring your heart out to me. 💓 I am sending you love and light as you have shown me. How are things going now?

Marianj4438

https://alzconnected.org/discussion/comment/186373#Comment_186373

My sister and I are a work in progress. Thank you for your kind words. 💜

Marianj4438

https://alzconnected.org/discussion/comment/192409#Comment_192409

Bless your heart. How was today?

Ariel12

https://alzconnected.org/discussion/comment/192409#Comment_192409

I understand. All my love and compassion.

NC Girl 23

https://alzconnected.org/discussion/comment/192530#Comment_192530

It’s been a while since I’ve been on the forum, as I’ve been dealing with some health issues for both myself and my hubby, and we are still dealing with the estate and trying to sell their house.

It’s coming up on the one-year anniversary of Daddy’s death, and I still have meltdowns for them both. Christmas was different, as my only sibling decided to stay with his “family” after spending previous ones with our parent(s) and my hubby, children, and grandchildren. It just wasn’t the same, and my heart aches for my Mama and Daddy, as it does from time to time. It seems to get a little easier and then slaps me hard—so hard that I find it hard to recover. I pray for strength and know it comes, but those times that it’s lacking are the hardest of my life.

Hope you’re doing well.

Delmar2024

https://alzconnected.org/discussion/comment/186373#Comment_186373

I am so sorry for your loss. There is no limit to grief and sucking it up mean keeping it inside. I was very grateful that in New York there was an Alzheimer's group and it helped me while my mother was alive but when my mother died 14 years ago, I stopped going to the groups since most of the participants parent's were still alive. I find that grief becomes more complicated when others such in your case are either steering away from you or just not understanding. I had another group of friends and my sisters whom I was able to share stories and the grief. I wish you all and will keep you in prayers. May you and your sister find each other again.