Not eating, stress, and father issues

CatsWithHandsAreTrouble

Things are getting out of hand over here and no one's sure what we're going to do next. 

Mom has starting to resist taking her pills and also is barely eating. My younger sister (YS) is having a mental breakdown and our dad is a visual trigger for her so she's looking to move away because dad cannot get a clue. My stress is starting to affect my health in multiple ways and I have to decide if I want a doctor to know I'm trans or not as that may negatively impact my healthcare going forward. My older sister (OS) is having other health issues and her home is needing major repairs. 

Mom has lost 10 pounds since June or thereabouts. Since she's hardly eating, we can't get her to eat enough fiber so she's still having diarrhea nonstop due to the donepezil. I don't know why OS hasn't gone back to the doctor to switch to something else yet. I brought up an alternative medication, the one that's a patch so we're thinking about looking into that as soon as I recall what its name is. Mom had a doctor's appointment earlier this month but it got canceled and rescheduled for sometime in October. 

We have no idea why she's not eating. We sit food in front of her and she says "wow, this looks good!" and then she just stares forlornly at it and pushes it away. Or she'd be eating fine and then suddenly stop and say "oh I've eaten too much," even though she hasn't even had half of anything. We've tried eating earlier thinking maybe she's too tired to eat, we've tried bright colored food that looks appealing, different plates, finger foods, switching out whatever we made with snacks she likes. Nothing seems to be working and we're getting stressed out about it. I personally get the most stressed out when we sit hot food in front of her and she touches the room temperature plate and won't eat anything because "it's too cold."

Her incontinence is increasing more frequently overnight and she is having a hard time regulating her body temperature (always too cold or too hot). I am very sure that mom is way beyond what we can handle now and we're all burning to the ground because dad doesn't want to place her. Thank the Lord he is okay with the aides we have coming in. Perhaps we should see about getting more help come in, ones that are qualified for complicated Alz care? 

I'm not sure. If YS is moving out, I'm going to start planning on leaving too. There's no way I can take care for mom without her support here unless dad decides to step up. So I guess either way we're going to have to get more aides in to make up their loss of support from us.

mommyandme (m&m)

Get hospice in for an evaluation!

CatsWithHandsAreTrouble

Wow, thanks m&m! I was just thinking about if we should consider it. Have you been reading my mind?

I guess I'll add that to my list of things to research. Thank you truly!

CatsWithHandsAreTrouble

Oh, uh, mom did say at one point during the beginning of her diagnosis that she didn't want hospice. Should that be something we honor or just put that with "the disease talking" and go ahead with seeing about the evaluation?

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sandwichone123

CWHAT, I am very happy to see you posting. I have been thinking about you with concern. If it's been a while since you sought health care for yourself, you may find that things are much improved. Depending on where you are, healthcare in general has become much more accepting and understanding about trans people and their needs. Even in the most conservative areas it's much easier to find understanding professionals than it was just a few years back.

I am also happy to see that you are considering leaving. You cannot bear both of your parents on your own shoulders. There are options that may work well for them, but having you provide all the care and decision making while neglecting your own needs is not such an option.

I do second the suggestion of hospice, as they provide excellent services, reliably, at an incredible price. I would take mom's statement of not wanting hospice as more of a statement of avoiding death than about a realistically-focused personal preference. All the options available at this point in progression are options we would hope never to need.

M1

Cats, have you considered stopping the donepezil?  It's probably impacting her appetite as well as giving her diarrhea.  These are very common side effects.

MN Chickadee

Regarding eating, my mother did what you describe in later stages. She would act like she wanted to eat but not do much with it. We found she needed a lot of prompting. Someone sitting with her, putting some of the food on her fork and encouraging her to bring it to her mouth. Same with the cup. It was laborious but she did eat better that way. It sounds like your mom is nearing the end and hospice would be of great value to all of you. Their whole deal is to make her comfortable and provide support for the family. 

I hope you are able to find a physician you like. Are there any trans resource centers or support groups in your area? They may have a list of providers they recommend. I hope you find that things have changed since your last experience. 

Until your dad stops controlling everything while standing in the way of good decisions there isn't much you can do; take care of you. Don't let dementia take down the whole family, you and your sister need to take care of yourselves - it sounds dire. 

zauberflote

Cats, my heart goes out to all of you! I'm glad you're considering leaving, and maybe it doesn't have to be contingent on what YS does. This stress level you are all carrying is like a snowball that will take you all down if left to itself. Mom is probably picking up on the ambient stress too. My mom and MIL were very aware of moods around them, and for Mom, who declined much farther, she picked up on mood and emotion even when almost no other part of her brain could work right. 

There are these red plates that my mom's MC used, which are supposed to somehow make food more appetizing. I think they're on Amazon among other places. 

Re hospice, oh my yes. My MIL knew it was hospice, but had been carefully told that it wasn't because she was dying, it was to give her some extra visits of people who could watch out for her health. She lived 18 months on hospice. 

For Mom, who had engaged hospice for the last few days of Dad's life, and then volunteered for a time, we had to tread more carefully. Turns out the hospice staff was quite accustomed to removing their nametags in the MC, and never using the "H" word. Mom never knew she was being evaluated (chatted with!) and watched over (paid sweet attention to!), and we family had the peace of mind of knowing that we had support and services we wouldn't otherwise have had. Mom lived 8 months on hospice. 

You don't need a doctor's referral to call hospices and ask for them to come visit. Pre-pandemic, they'd come the very next day. Not sure how it is now. I hope you find someone calm and cheerful, and full of compassion and knowledge!

CatsWithHandsAreTrouble

Thank you all, you wonderful, wonderful people!

Yes, the plan is to get mom off donepezil. I think there's an alternative medication that is in a patch that will bypass the GI tract and not cause the diarrhea. I just need to find the name of it here on the forum from previous threads.

My sisters and I just found out today that dad hasn't paid the mortgage in a while and the house is being foreclosed towards the end of October. Fortunately I have been saving my tax refunds and PTO so I can get the account in order to save the house but I'm not sure about going forward after doing so since it's not an expense I can afford with my income continuously.

I am going to get in touch with a social worker who deals with other transgender clients in the medical field and see if she can help direct me towards a compatible doctor, referred to me by the LGBT resource center in my town. I've just heard so many stories about people getting refused care for being trans. I think all this stress is starting to hurt my heart, literally.

I'll see about bringing up hospice with my sisters. Not sure how to tell dad about it since most folks think negatively about hospice in general. There's still the possibility that he,too, has early onset dementia. I just don't have any time towards figuring that one out yet.

mommyandme (m&m)

• In March 2022, the FDA approved Adlarity (donepezil transdermal system) to treat Alzheimer’s-related dementia.

• Adlarity is a once-weekly patch that’s applied to your skin. Patches are often helpful if you can’t swallow pills or if pills cause bothersome side effects. 

• We don’t know exactly when Adlarity will be available to the public, but it’s expected to be available in the U.S. come early fall 2022. 

is this it?  Found this on goodrx.

CatsWithHandsAreTrouble

Apparently it's called Exelon, generic is rivastigmine

CatsWithHandsAreTrouble

zauberflote, I've read about the red plates. I think there's been other study that says it's more about the size of the plate and the contrasting colors of the food to the plate. Sadly we've tried both, red plates and larger plates. It worked for a while but these past few weeks it doesn't seem to any longer.

Chickadee, we try prompting, sometimes she gets really upset and hard to manage if we go on too long. We'll keep trying though. So far this morning it's working with some strawberries.