Caregiver Guilt - Desperate for Support

gabbyblankies

Hi. Not even really sure what I’m asking for. I guess someone to tell me everything will be okay.

I’ve been taking care of my mom part time for years. As of 3 weeks ago, I have had to work with her spouse around the clock since my last time at work. It’d take a year to write everything that is going on but she is past the point of our care. She no longer will put on clothes. We have had to call 911 twice - once that we first called emergency hospice for, for aggression. They called 911 and had to strap her down and forcibly remove her. The second time for a grand mal seizure.

She has started hallucinating a lot. She stopped taking pills. We’ve have been crushing them and putting them in her coconut water but when she doesn’t drink it, it gets very scary here. She’s down to only eating 2 things (that’s been going on for a few months) and she does not reliably eat. She does not drink normal water - only coconut water. The nursing home cannot accommodate her diet.

She has no comfort items - literally everything, and I mean EVERYTHING, sets her off.

She is not incontinent, but I suspect she will be once she is no longer familiar with her surroundings.

We will be transitioning her to the nursing home tomorrow. I’m not sure they are equipped to handle her.

How do I get through this? I’m scared for her. Obviously we know we can no longer care for her. But I’m not sure they can either. I’m sure she will stop eating. I just wish she could die peacefully. She’s being tortured and so are we. 

I haven’t been able to sleep (due to needing to watch her overnight) and eating very sparingly. The stress has really taken its toll on me.

I guess just asking for advice. How do I handle the guilt of sending her away from us (her only comforts). Anything helps.

gabbyblankies

More context: my mom is 66 years old. She was diagnosed with early-onset Alzheimer’s at 54.

When she is coherent, she knows who we are. During those times, she laughs and smiles and speaks sentences. These periods can last anywhere from a few minutes to an entire day.

When she is not coherent, she does not recognize anything. She speaks gibberish and/or has a very limited vocabulary. Recently she has been not even forming real words in her agitated state.

sandwichone123

When you have provided the best care for her for as long as you can, there is not space for guilt. The disease is doing this to her, not you. Even at this moment when the best care for her involves other people and facilities, you are her advocate and are guiding her care, continuing to provide the best care for her that you can. This change may be an end-of-life transition. You might want to ask for a hospice evaluation, because sometimes there's a huge burst of energy near the end. That was what signaled the need for hospice for my dh.

She raised you to build a life, and you don't need to feel guilty for doing that either. So when you return to work while trusting others to meet her needs, that is what she would have wanted for you. For context, my dh also had early onset and died at 63, in a facility. While it was difficult to place him, it was good to be able to go visit as a family member and not as a caregiver.

Maru

If she is aggressive with you, it is unlikely that AL will have her. It may be time for MC. Like being a parent, we all do the best that we can. in retrospect, we beat ourselves up over what we could have done better. Guilt is counterproductive, at best.

GothicGremlin

@gabbyblankies

I just want to say (before I say anything else), that I'm so sorry that you, your family, and your mom are in this situation. Early onset is its own particular kind of hell.

My sister was also diagnosed with early onset. She was diagnosed at age 58, and passed away at age 64.

She shared some similar traits with your mom. She would often speak using short, staccato, one syllable "words", that I'm sure she thought were words, but were not. They were just sounds. This was stage 6.

I'm wondering if stage 6 might be where your mom is now. If so, placing her in memory care is probably best.

I agree with @sandwichone123 about calling hospice. They're amazing - I wished I had called them earlier than I did. They provided so much more individualized care. Something to think about.

Everyone is right about the guilt. Please don't feel that way (easier said than done, I know). By placing her in memory care or a nursing home, you're doing the very best for her. She'll hate it at first. My sister did too. But then she surprised me and said to me "I wished I had moved her sooner". Knock me over with a feather. Maybe your mom will feel that way too?

One of the things about memory care is that it is a very structured environment where everything is scheduled - meals, activities, bedtime, etc. The routine is comforting to many there. I wonder if some of your mom's outbursts are because the largeness of her environment is stressing her out and she is unable to express that to you. I certainly saw that with my sister.