And then there was one . . .

ESkayP

My mother has been in MC for a year and a month. For a while, Mom would call me and want to leave because she'd say, "these people here are not my people." I thought visits from her friends would make a difference, but she doesn't remember them. I see her every Sunday and sometimes after work, but she's usually sundowning and really out of it by 4:00 p.m. A dear friend of hers visited in August and wanted to see her again yesterday. I had the day off, so we went together. Mom didn't remember her. We all talked together, but the friendship they had is gone. The friend kept it together until we got outside. It's so hard to see everyone around Mom grieving one at a time. I know how hard it is for me to come to terms with staying in the present, let alone how difficult it is for her friends to realize that there will be no reminiscing, no planning, just repetitive fragments about teaching for thirty-six years. None of the other colleagues or family friends have continued to visit her once they saw the state she was in. I don't blame them. I have no idea how long she will stay teetering between Stage 4 and 5 before she forgets me, too. The pressure of being the only person she remembers and who keeps her connected to the world is immense. The thought of this responsibility going on for years and years devastates me. I wonder sometimes if I stopped going every Sunday how long it would take for her to lose reality completely. I don't want to let her go.

jen ht

"I don't want to let her go." Sending love and support here via this message. My hand in yours over the miles.

It is so hard. I hear you. 💜

May we be well,

jen

ESkayP

Thank you, Jen 💜

JM27

https://alzconnected.org/discussion/70929/and-then-there-was-one

My heart feels you pain and sorrow. I’m sorry you are going thru this.

psg712

"The pressure of being the only person she remembers and who keeps her connected to the world is immense" - I relate to those words. My heart goes out to you. This is such a cruel disease.

mabelgirl

maybe if we change the prespective it might help. Instead of being the only one keeping her connected to the world, focus on getting to see your beloved physical mom every week . I know it’s hard but I try to grasp any positive I can. Prayers for peace.

Merla

I'm sorry, this sounds so hard and heart breaking. Your mom is fortunate to have you.

etjames

https://alzconnected.org/discussion/70929/and-then-there-was-one

I’m so sorry. I care for both of my parents. I see your point about not blaming her friends, but there’s also grief there. She’s your mom, and you continue to show up for her. If you can handle visiting her on top of all the other stress that comes along with taking care of a loved one’s medical/financial/life matters, can’t they muster the courage to face some grief, get it together to visit her, and take the pressure off you? I don’t mean to blame them, but would they abandon a friend who had any other chronic illness? Especially with a disease that can go on for as long as dementia and Alzheimer’s do, it feels like friends and family can be extremely insensitive to the grief caregivers face.

ESkayP

@etjames Thank you for saying that. I sometimes feel sorry for myself because all the pressure to be there for Mom falls on my shoulders. I have a sister who lives two states away, and she visits twice a year. It's not the same at all. She feels guilty, but she needs me to tell her it's okay. It isn't okay. I know that she can't quit her job or sell her house or start her life over just to come help me with Mom when it could be years and years. I sound like a child when I say how unfair it is. Then, I thought Mom's friends were going to help, but one by one they stopped coming. I feel so alone sometimes. I appreciate you "scolding" them a little bit. I don't even give myself that luxury. I tell people it's okay or I understand or I'm fine. I just don't know how long I can keep doing that.

Anonymousjpl123

@ESkayP you have said such true and powerful words - how hard it is as others connected to our loved ones fall away. It is such an apt way of putting it! I have to admit I am relieved to read this thread, as I too am the “portal to the outside world” for my mom. This past July I had a birthday for her at her MC where some friends and my siblings came to celebrate. She has always forgotten, but I am glad I did it. I have photos. Will it help her to see people showed up for her? I am not sure.

Carrying the caregiving burden alone has its advantages (no one to argue choices) but comes with a special sadness, I think, as well. Hang in there.

ESkayP

@Anonymousjpl123 I think the birthday party for your mom was a lovely gesture. I'm glad you have photos to commemorate the gathering. I have a "memory book" that Mom and I look at pretty frequently. It has photos of all her loved ones, even her parents and herself as a little girl. She will sometimes light up and tell me what color a dress was or the name of her doll. It's such a marvel when something surfaces that I thought was buried and lost forever. That's what the photos do. They make little pieces of our whole lives accessible in the present. We still get to keep the birthday parties and Christmas dinners. Thank you for your comment. You've reminded me how fortunate I am to witness the little things that still make her my mom.

lizzyt

https://alzconnected.org/discussion/comment/226278#Comment_226278

I had a small party for my mother also on her birthday last March. It was kind of last minute but 2 of her friends and some relatives from her family and dad's family made the effort to be there. She never said a word ( she talks very little) but when I wheeled her into the room she gave me one of her looks so I think she knew what was going on somewhat. Everyone visited with each other and she opened her gifts and ate with my help. After it was over I was glad I made the effort. I don't know if anyone visits on a regular basis. Unless Staff tell me I don't know.