Dementia Daughter

Lost Dad to dementia almost 6 years ago and immediately went into caring for Mom. He was 92, she is now 93. She has dementia, too. She knows me, but is confined to a wheelchair and can’t communicate very well due to poor hearing, lack of cognition and poor health in general.

I am alone in this even though there a lot of people who care and support me. I am lucky to have support from family and friends. The support system helps, but there is still the pain and grief. She is in a facility near me and I visit often, coordinate care, pay all her bills, try to bring her some joy as much as I can and basically have watched her decline very slowly for three years. She can’t take care of herself and I am married and work full time with young adults kids. I can’t care for her full time not would she have wanted that.

I feel like it is never enough and have major guilt and anxiety about it and have for many years with both their situations. Grieving is complicated and I just haven’t come to terms with it all because it is constant and no break from the big feelings of anger, sadness, loneliness, overwhelm and exhaustion coupled with joy to be able care for her in the best way I can. She deserves it.

She lights up when I visit and it makes things seem good for only a few minutes when she launches into a paranoid story about people out to get her, trying to kill her or take her money. I listen and offer my thoughts if I can understand what she is saying and do my best to calm her down and give her some peace. Visits are not very good anymore and I have had to back down to 3 days a week for my own health.

Have you had to back down? I have a great deal of guilt for that. I also know I need to take care of my health since my health is suffering due to the many years of this and many others rely on me, too. There is not much time to slow down and process anything. It is like a roller coaster I can’t get off even if I wanted to. IF you are a caregiver, you know.

I know I am not suffering as much as she is though. I wish some days God would bring her home so that she doesn’t have to be like this anymore. I know she would absolutely hate it in her current state. As much as I miss her, she misses herself too deep down and her freedom from being trapped in her body and mind.

My therapist says I have unprocessed grief which can make the body change, definitely affect mood and relationships, and is exhausting. She is not wrong! I don’t have time to grieve fully, I am always preparing for the next middle of the night call, the hospice update, the medication changes, the behavior episodes, the bills that come in unexpectedly that deplete her accounts. And yes, I worry about how we will pay for all this. No breaks for the caregiver.

Grief is a sneaky thief of joy. Worry is it’s second cousin! Grief and worry steal so much from us. I wish I had answers on how to cope. I know what the “experts” say. I try to follow the advice. Mom always had good advice. Things like – this too shall pass, better days ahead, it will get better, and be patient.

This is not passing. I know there are better days ahead. It will get better, but she won’t. She will die. Being patient for what? For her to die? It doesn’t compute in my brain. I know the way out of this is for her to die and that seems odd to be waiting patiently for now. She isn’t living. She is not even aware of what is happening. It is very complex and there is no way out of this. It doesn’t process well any way I try.

I write these blogs because it helps me process though in some way it seems. The situation doesn’t change nor does the loneliness. The grief remains. If this reaches you, maybe you have felt the same or have a sense of this painful longing, too. Perhaps knowing you are not alone helps sometimes, regardless, we keep going don’t we?

I wish you well on your journey and hope you have the support you need. In the end, we have to develop resilience and allow our mind and body to process things and not hold on to it forever. I hope you get the chance to grieve, process and come out on the other side. Hugs.