It’s lonely on the other side

Sarah_pdx · June 2023

My mom died a few months ago. It was so shocking. Even knowing ALZ is a leading cause of death, I didn’t really get that it would kill her, especially because she was otherwise in good health and still had abilities I assumed she would lose first (walking, talking, recognizing loved ones). But she fell and never walked again (broken hip?) we put her on hospice (thinking she’d probably live a few more years) and she died three weeks later.

Now that all the months post-death work and events are over. I find myself with too much extra time. After years of caregiving - wishing for more downtime - I now find myself facing a void. I no longer go to my caregiver support group because I am now removed from the grinding stress of caregiving. My reality has completely changed. Where do the ALZ bereaved go for support? So far I’ve found nothing. So I’m posting here.

To all those still running the caregiving gauntlet I send my love. It is so hard. For those that might need it, here is some of my hard earned wisdom:

There is no perfect in ALZ. There are strategies for phases and behaviors, sometimes they work, sometimes they don’t, sometimes they do then don’t or don’t then do. Things will keep changing as the disease progresses.

There is no perfect memory care or foster home. There is better and worse - prioritize proximity to your home. Your visits will probably be both shorter and more frequent than you think. Plus, there are emergencies.

Go to a caregiver support group. You will feel less alone, get emotional support, learn strategies, and get recommendations from others going through it.

As soon as you can get your loved one on hospice, do it. There is much more care and it’s covered by Medicare. But it is also, not perfect.

You are doing your best, and it will not be perfect. You will have days you cannot do your best and that is okay. The measure of your love and your character is in continuing to show up for the imperfect and heartbreaking work.

Show up to savor what is still there. I would love to hug my mother again, sit next to her and hold her hand, sing songs, dance, sit and enjoy a beautiful view, comment on nature, laugh together, tell her I love her. They are small things and they are precious, even in the midst of ALZ.

There is an end to caregiving.

BassetHoundAnn · June 2023

I'm so sorry for the loss of your mother, Sarah. There are few things more difficult in life than grieving for one's mother. Thank you for the words of wisdom. They are all true. They are all necessary. I wish someone would have told me these things years ago. You are correct, nothing is perfect, one must learn to accept the compromises, the shortcomings, even when one struggles to do everything perfectly, to be the perfect caregiver. Again, I grieve for your loss. Thank you for coming here and sharing what you've learned! It is a help to me and hopefully it will be of help to others.