When is it time for MC?

Jackie_K

I know this question always comes up, but I need some help thinking through this for my mom and would greatly appreciate input from those who have had to make this decision before me!

About my mom: she was diagnosed last summer and still lives alone. Based on her last exam, mom's neurologist says she is still early stage, but suspects that she will need to have full time care in about a year. Her short-term memory is terrible, but her executive functioning scores are still actually quite high (higher than the norm for her age, somehow). The house is still clean, she has no issues with bathing/dressing herself, etc.

My dad passed away nearly 30 years ago in a car accident, so she's been independent for a long time. She is also very attached to the house as she's lived there now for 50 years, and it is what makes her still feel attached to my father. She has always struggled with depression and anxiety, which feels like it complicates and exacerbates everything. I have discussed many times with her doctor, and she agrees that it could potentially make mom decline much more quickly if we pull her out of familiar surroundings before we need to - so we have done our best to keep her home as long as we can. (Her doctor is supportive of her being moved to a facility whenever we think it's best, so she hasn't discouraged us at all, just understands what we are trying to balance as she's known my mom for a long time.)

We took away the car as soon as she was diagnosed, and I've patched together different support to help her stay home (grocery delivery, dog walker, Hero medication dispenser, Alexa reminders, etc.). I have POA and manage her finances, medications, and doctor appointments. She now has a caregiver who comes by during most days, which has been a huge help with keeping her occupied and getting her out of the house.

The biggest issue I have is that she has absolutely no emotional regulation whatsoever and there are long stretches of time when she can be downright angry and abusive, mostly to me. Whenever her caregiver isn't there, she's calling me repeatedly, 10-15 times a day. Turning my phone off helps but I have missed important work calls as a result of this so it's not a great solution either. She will leave me multiple screaming and angry voicemails when she's really wound up.

I have done my best to adapt to whatever triggers her (she hated going to the doctor, so we don't go anymore unless it is absolutely necessary, mail is now forwarded to me, etc.), but sometimes I can't even anticipate what will set her off (we are currently going through a long stretch where she's amped up because she thinks her vet stole her dog's collar).

She does have stretches where she is calm for a few weeks, but I always know that it will turn eventually. Her neurologist has suggested she get medication through psych to help better regulate her moods, but the wait list is over a year long. She is on the wait list, but it is a long time to get relief.

This morning my car wouldn't start and this seemingly small thing completely sent me over the edge. I lost my temper with someone at the dealership, which is not like me, and then went outside and just started weeping (also not like me). I think what I'm realizing is that I can't live like this. I am anxious and on edge ALL the time. I feel sad, alone, and resentful, and then guilty because I know none of this is her fault. I am a cancer survivor and live with a chronic autoimmune disease myself, and my doctor has told me repeatedly that I need to cut down on stress - but I don't know how.

After this last rough couple of weeks with her, I am feeling like it might be time to put her in a facility, but I don't know if this is to alleviate my own stress or if this is truly the right thing for her. I really do not know how to make this decision and don't want to do something harmful to her just to get some peace for myself. At the same time, while she is not at a stage where she needs physical assistance yet, I feel like this level of emotional dysregulation requires more care than I can give her.

I know this was a long post so truly appreciate if anyone has read the full thing. Thank you all so much for always being there!

M1

Jackie, the best answer to your question is that if you're asking, then it's time. It's not just about her stage, it's about you as the primary caregiver, too. Think about it this way: if you were gone tomorrow, where would you want hervto be? Lost at home by herself, or safely established somewhere where she can age in place?

it's not just about her ability to shower and dress and toilet. Most of the residents at our MC are still independent in these things when admitted. She may actually thrive in the controlled environment, part of her calling you repeatedly may relate to her being bored and not having the executive function to occupy herself. And it definitely sounds like she could benefit from medication. I'd push the current docs to at least try some of the common things (Seroquel, Depakote). She should not have to wait a year for relief.

the thing with the dog collar is funny.....though I'm sure exasperating to you!

IId go ahead with it. You both need the change. Do it now before there's a crisis.

H1235

I try to ask myself -what would mom say about this situation if I could ask my mom pre dementia. Would your mom really want this situation for you and her. It can be very hard to know when she is not safe to be home alone. Eventually the time will come. If you try to push it too much and keep her there too long it may be an accident that makes it necessary for her to move. That could be very ugly. Ideally you move her before. If she is forgetful, what about the stove(is it still usable?) will she remember to shut it off? You mentioned MC, but AL might be a better fit. Some facilities have a waiting list, so it might be worth looking into now. Even if you decide to hold off on the move it will be good to know what’s available. Many also have a doctor that visits and may be more willing to prescribe something for her anger. This will probably not solve all your problems, but you will know she is safe. Good luck

harshedbuzz

@Jackie_K

Families generally consider a range of factors when deciding when. A PWD might need to be placed sooner if the primary caregiver isn't up to the physical (you) or emotional work of caregiving, if the caregiver has other responsibilities (also you), or when the cost of in-home aides exceeds the cost of care in a facility. Another piece to consider is the temperament of the PWD— your mom, frankly, sounds a bit harder "than the average bear".

My dad had a difficult personality that intensified in the middle stages of dementia. For our family, the middle stages of the disease were the hardest. Dad could be so incredibly awful. While his memory and executive function were seriously impacted, he came to the disease with a lot of cognitive reserve and a chip on his shoulder. Medications did help dial some of this back. Would the neurologist or PCP be willing to prescribe a low dose antipsychotic until you can have her seen by a geripsych? She's suffering, too, here.

I found dad's doctor more open to increasing his dose of medication after I shared a video I made of one of his nastier meltdowns. A geripsych admission is also a way to trial meds but she's unlikely to be admitted unless her behavior is extreme or physical.

Placement would be appropriate now. That said, if she's prone to outbursts with others besides you, she may need to be medicated before placement or risk being asked to leave.

HB

Lucy C

What this comes down to is that you are stretching every resource to care for someone who is attacking you in return (even though the disease and not the person is to blame). I don't know anybody who can stay mentally healthy under a very long stretch of that. As you say, you have pre-existing conditions, and can't afford it.

Temporarily, you should be able to set your phone up to screen her calls, and even block her number if necessary. If you don't know how, the internet will have instructions. If you are the primary target, this could work for a while, or she could find another target. (If you block her phone, make sure the caregiver knows that they cannot use her phone to call you.) You will then need to be getting regular reports from the caregiver to keep on top of things.

I'm inclined to agree with M1, that it's time to start planning for a transition. Preferably, before you in end up in the ER with a physical breakdown of your own.

CaliforniaGirl-1

A physician I know says that families and caregivers often forget or underweight the fact that there are 2 people in the patient caregiver relationship and it is very hard to be a good engaged caregiver if you are driving yourself to and beyond the edge of exhaustion and emotional ability. (What he really says is, this is how he ends up with 2 patients instead of one)