My mother is dying and taking me with her!

Gina224

Hello All,
I’m new here, please bear with me as I figure things out. My mother who will be 85 yrs old on 12/16 is in the late stages of Alzheimer’s Disease. Mom had 3 kids, 2 boys and me the only girl. The guys have since departed this life leaving me as the sole caregiver for our mother who was once a strong, independent dynamic woman! I had to place Mom in a long term facility in 2013, since that time I’ve remained active and involved in her life. The disease has slowly progressed over time, Mom is now an incontinent, drooling, dribbling shell of the person I most admired. It seems no matter what I do, it’s never good enough! Whatever her needs I supply, she either destroys or somehow it disappears, this can be anything from food, clothing, toiletries etc. I don’t want to leave her alone, however at the same time I simply don’t know what else to do for her, I’m so ready to just walk away, I love her dearly unfortunately at this posture I’m beginning to feel like it’s with me or her!

SusanB-dil

Hi Gina224 - welcome to 'here', but sorry for the reason.

She is in a facility, so could you, for at least a few days, go ahead and walk away? Caregiver burnout is REAL!! You need to take care of yourself. Take a break. Please. Yes, it is very difficult to see our LO in such a state. Our LO is 'with us', but it is not them. And that is heartbreaking!

Gina224

https://alzconnected.org/discussion/comment/230262#Comment_230262

Thanks, you’re absolutely right! It’s hard to even take breaks , the guilt in not seeing her is overwhelming! I’m getting better and on a bit of a hiatus now, it will be short lived because even though she’s in a facility I worry about her tremendously .

SusanB-dil

Yes, we do worry about them, wherever they are… after all, she's mom.

But if you see that they are taking care of her, you will always be her advocate. Please let go, even just a little bit. They will notify you should something unusual come up.

sandwichone123

When you worry, it can be worth it to take some time, perhaps at a coffee shop, and really think through the worry. Are you concerned that she is not getting good care? Is it a free-floating worry that she is not the person she once was? Once you can pin down what the worry is, you can make plans to address it, and you may find that visiting only to be blamed is not really going to address the concern that you have. Then you will be able to plan a schedule that allows you to be present for yourself while assuring that someone (but not always you) is meeting her genuine needs.

Gina224

Hello and thank you for your insight. I think I worry because I see how the disease has ramped up over the past 2 years. She has become more dependent upon others and being in a facility where there are so many my concern is the ball being dropped. I feel as though I must be diligent in ensuring she is cared for properly when I’m not around. I’m with her most weekends and holidays, last week I kept her overnight for Thanksgiving. As mentioned she’s incontinent and I forgot to add wheelchair bound requiring assistance in all adl’s. It’s simply gut wrenching ordeal with no end in sight!

psg712

The ball will be dropped from time to time ... it's inevitable, because there are human beings caring for her. But they no doubt know how much you care, and knowing there is a caring, vigilant family member involved will almost always motivate staff to be more attentive in their care for her, even when you are not present.

Please remember that you are human too, with real human needs. Taking care of yourself will make you better at taking care of her. Step away for a few days, as Susan suggested. In her right mind, would your mom want you to be gutted with guilt and resentment over her care? Even if the answer is yes, you do NOT owe her your mental health.

If you have real evidence that her care is neglected when you are not present to oversee it, perhaps it's time to talk with a director there or even to look for a new facility. But if the care is usually adequate- meaning she is clean and safe - then you can take a break. You are worth caring for too.

Gina224

Thank you so much for your response, you really made my day! I’ve only joined this community a few days ago and I must say that my spirit has been lifted in ways I can’t begin to express. Even though I know in my heart I’m doing the best I can, I often have to remind myself of that and reiterate to self that it’s not my fault she’s so sick. At the end of the day, no matter how frustrating and stressful this situation is; I hope she knows how much I love her!

Victoriaredux

She does, and it's not on you to "save" her from this disease.

"she either destroys or somehow it disappears, this can be anything from food, clothing, toiletries etc"—so just bring what she can eat with you there , clothes are always a moving target in a home- just label them and forget , toiletries - only when the home said she needs them - mark her rm number or name on the bottle and cast it to the waters . You do what you can and that's how it goes.

Just visit and enjoy the moments. She has probably lost sense of time between visits so do what you can handle. She's in a safe place. If you are more relaxed she may be also. She's a fortunate woman to have you.

Gina224

Thank you!