I'm new- Grieving while they are still right there

Lafmore

My sister, my best friend, went in a two week period from being a full-time hospice social worker to having major memory issues, delusions and very active hallucinations. She tried a new anti-depressant, but the doctors said it couldn't have been the drug that caused it- personally I don't see how it couldn't be. They originally thought it was late onset schizophrenia (she was only 59 when this hit) but their anti-psychotics just made her worse. No one would do full testing. She quickly became unable to live alone so I moved her in with me. Our mother died while all this was going on, so we moved into her house so we could get it ready to sell then moved to Washington. Then she got cancer and had extensive treatments which totally took her down. Now she couldn't care for herself at all, needing help dressing, bathing, incontinence, food and of course all financial and legal issues. I was her sole caregiver for two and a half years. After the cancer, which is gone for now!, she became weaker and became less able to do even little things like brush her teeth. Finally, when I could no longer help her get into bed she had a couple falls, we decided she needed more help than I could give. I found a wonderful adult family home that only has 5 residents and they specialize in Alzheimer's and dementia. It was so incredibly hard to let her go, to not see her every day. But I'll also say, I had been exhausted from the 24/7 care of her by myself. Then last fall, we finally got a referral approved for a neurologist and with all the testing, he said it is definitely Alzheimer's. But I didn't have years of decline- it literally happened in two weeks- from healthy to moderate to severe damage. 

Since she's moved out, I have slowly begun to reembrace my own life, but what I'm also experiencing is a well of grief that I didn't have the luxury feeling while I was caring for her full-time. It's so hard, because she's still right there! But she's no longer the sister I've known my whole life. She has heavy delusions and hallucinations so much of her world is ungrounded. But I can still get her laughing. Then the other day, when one of the caregivers was helping her in the bathroom, she began yelling at the woman, swearing at her and even hitting her. I know this is behavior that is not unusual with Alzheimer's- but this is my sister and so very out of character for her. It was heartbreaking to witness. 

I guess I'm writing because it doesn't feel right the share the depth of my grief with her friends and our family. She's still alive- she's right there. But she's also not. And I am grieving. I thought this community might understand. If you have any insights, would love to hear them.

jfkoc

Grief is not exclusive to death. It is what we feel when we lose something important to us.

You are losing your sister. Grief is going to accompany that. We do understand and are here to listen and support you.

Rescue mom

What you are feeling is real, recognized, and sadly very common in the dementia world. It’s usually called “ambiguous grief” or “anticipatory grief.” You can Google both or either, I usually add the term “for dementia” to narrow it down. There are also books about it, others here may recall the titles.

We (families of dementia patients) have lost our “person”—the personality, shared memories, experiences, etc. The person we loved is gone, but a body remains that needs care. We’ve essentially lost our loved one, but almost no one else understands that because, they’ll say he’s right there. Well, a body is here, but it’s not the person I married. Few others get that.

Plus, you had to deal with so much, so fast….dementia support groups often help and understand, as do people here. 

You can find a local support group by calling your local Alzheimer’s Association, and often by googling although IME they’re not the best at keeping websites up-to-date and the real-life meetings are still kind of fluid in some places.

KNW76

I understand what you are feeling.  I grieve for my mother who is still here as well.  But she is not my mother as I know her.  I miss having a mother and I miss being able to spend time with her and have talks.  I miss her advice and hugs.

Although I still see her regularly, she is not the same person and I miss the person she was.  Her friends have mentioned this as well.  Be kind to yourself and know you are not alone.  

dbouterse

I’ve just joined ALZ Connected today. Yours is the very first message I’ve read, and it hit me right in the heart. I’ve been my wife’s sole caregiver for nearly 2 years now. I have experienced grieving too. It’s very hard to come to grips with seeing someone you love just melt away. I wish you the very best, and please take care of yourself.

Fairyland

It’s very hard, isn’t it.  Some days are better than others. It’s so multifaceted too- the fear of the unknown, the shock when things turn out badly or get worse, the lack of undertaking by society and many if not most individuals, the grief and loss, the financial and administration burden and worries, the loss of your own life and time to enjoy things. And the anger and irritation then guilt since they can’t help it.

Neither can you, but you just keep trying.

FTDCaregiver

Life has really hit you hard with so much.  Greiving seems endless, and often so the stages seem to repetitive, just when you think you're getting through it, your LO's steady decline pulls you right back in. Coping is important, family, friends, support groups and continue to look ways to connect to your LO can help.  These little moments when I can still connect just brighten my day and when we can still laugh together, I feel we still share life together.  Please try to separate her "character" as you mention from the disease which is really the driver of her behavior. This forum has helped me with my grief, kind people here.