What was your last straw before placement?

NizhoniGrrl

I'm somewhat early in this dementia journey. Mom has had MCI diagnosis for 10 years but just moved in with us this spring from out of state. I told myself this arrangement would work as long as it works, and then we'll find some local arrangement depending on her needs. My husband and I work full-time, and my job is demanding. As the pandemic lifts, I'll have more frequent travel. This is non-negotiable. I'm in no position to leave my job, and she has resources to pay for assisted living (or in home caregivers).

She is fine with her ADLs, just has about zero executive function so can't manage her own medication, appointments, or shopping. She has terrible judgement and spends money for entertainment, so I'm always the bad guy, intervening so she doesn't gorge herself on sweets (she'll get diarrhea and I'll be the one cleaning up the mess), and keeping her on an allowance (so she doesn't blow through her savings spending on stuff she doesn't need). Things are manageable for now, but some disturbing behaviors are emerging: she resists showering and we have to remind her every three days or so. But now she has started pooping in the shower! 

I think toileting issues might be my last straw. We're not there yet, but this latest behavior has me worried I should start researching options sooner than I expected.

sandwichone123

You should start researching options ASAP. Some places may have waiting lists or other restrictions. The situation you want to avoid is to start finding out at the time you actually need placement. That would be stressful and unlikely to lead to a good outcome. When I say this, I am also telling myself, because I am in the same situation with dh including the travel coming up in the near future.

Stuck in the middle

I think it's time to start looking, so you can place her while you are still able to be in town to deal with transition problems.  "Zero executive function" doesn't sound like she can safely stay home alone all day while you work, much less travel.

GothicGremlin

I agree with the others - it's time to start looking.

I recently placed my sister in memory care, but it wasn't because of a hard and fast "last straw." It was more that I felt I couldn't give her all of the care she needed.

Like Stuck in the middle, I worry that she might not be safe alone at home. Maybe bring in a caregiver for while you're at work?

Saya_G

I know you’ve read my posts so I won’t go into much of my situation. That said, many factors played into our placing our mother. Caregiver burn out, increase in care needs, primary companion developing health issues and ultimately breaking her hip.

All that said, we probably should have placed her earlier - don’t wait until you can’t do it any longer or there is an emergency situation. Make a pros and con list. Be honest - most care givers will find there are more pros than cons.

Good luck.

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ninalu

Toileting issues are tough, no doubt. 

My advice is to zoom out and look at the total care that she needs, including things like financial and legal protection, hands-on care, etc. What part will you do yourself and what part do you need/want help with? 

When I was thinking on this for my mom (after a while of doing it all as a live-in), my own answer was that I couldn't do everything and also be the "daughter" - e.g. have enough time and energy to simply be with my mom and share time together, grieve the process privately, etc. I was too overwhelmed with everything and had no time left to enjoy life. 

If you're feeling stretched, it's time to get help. Do it now, as others have suggested, because it can take some time to put the right people / helpers / resources in place. Also, the journey typically gets more involved and more challenging as time passes, not less.

So, long story short, my "last straw" was realizing that I had no time or energy left to simply be with my mom in a meaningful way because my net total responsibilities were too much.

harshedbuzz

NizhoniGrrl wrote:

To answer your title question- my dad had mixed dementia which seemed to enhance every unpleasant aspect of his personality. Mom was his primary caregiver; I managed the logistics of their life to support her. I, personally, would have placed him as soon as he was diagnosed in the middle stages of the disease as his care impacted mom's quality of life. But my line in the sand was his care impacting her health and safety. Even medicated dad remained aggressive at times and was expressing a notion that he was dying and would take mom with him as they did everything together.  

Things are manageable for now, but some disturbing behaviors are emerging: she resists showering and we have to remind her every three days or so. But now she has started pooping in the shower! 

I think toileting issues might be my last straw. We're not there yet, but this latest behavior has me worried I should start researching options sooner than I expected.

Pardon my snark, but if this isn't a "toileting issue", what is? I could also argue that if she's not showering, you can count that ADL as lost.

There's the story of the frog in a pot of warm water set on the stove. He's feeling pretty comfy and does notice the temperature rising or the danger of being boiled alive. This was my mom. The losses in dementia can seem almost imperceptible when you have a front row seat.

One thing that surprised me, and a number of others here, is that sometimes placement in a quality MCF where staff is well-trained and activities are dementia-informed, is that it can be a better fit for the person with dementia. 

One of the reasons I pushed hard to place dad- I basically bullied her into it by saying that if his care killed her, I would have him placed in the first available facility before her body cooled and that if she wanted to make the choice, she needed to act now- was he didn't cooperate with her care. He would resist food, showers, necessary medications and hydration offered as mom trying to control her. He did not do this in MC because he saw staff as medical professionals helping him, consequently they were able to provide better care.

Specific to your mom who is living with people who are too busy to really engage with her much of the day because of other responsibilities, she might thrive for a time in a MCF with social outlets, activities and outings. 

MN Chickadee

Once my mom got to the point where she couldn't be alone and also lacked the ability to self start anything so she needed to be entertained all day we enrolled her in adult daycare. This was a tremendous resource and allowed us to keep her at home much longer than would have been otherwise possible due to caregiver burnout. The tipping point for moving her to a memory care facility was when she became incontinent and started to have sleep disruptions. It doesn't take long for either of those to really burn the family out, especially if you don't have help coming in or respite.

NizhoniGrrl

Thank you for all the advice. I think I've been avoiding starting the work of research and visiting facilities (I've done this twice before in other states). I've had all the responsibility since my dad died in 2019 and my brother was soon diagnosed with terminal cancer. He was single and socially isolated, so I was also his person until he passed away last year. I've been very entangled in caregiving and estate management twice in the last 2 years (selling 2 houses, managing 5 bank accounts/trusts, etc.), so it seemed like I was finally going to get a little break after settling two estates before taking on more heavy decision-making. Ha!

I'm updating the POA later this month for our current state, and already have updated the Advanced Directive (and healthcare proxy) and POLST. I just discovered that her primary banking/savings account wasn't fully updated, so that is in motion now as well.

My worry always is that I'm not being a good daughter. I get cranky and resentful. I don't want to be that person to my mother, but I am very worn out from the many responsibilities I've had to shoulder. I never expected to be solely responsible for my mother; my brother, before he died, even told me it would be a bad idea for her to live with us. I've always seen our home as just a stepping stone to a new arrangement for her nearby. She'll be very upset to leave, and I'm dreading that!

SusanB-dil

you are being a good daughter.  You can check other messages - you are not doing anything TO them, in placing them, you are doing it FOR them.  You have had a lot on your plate. But you need to take care of you.

At the moment, we are still with MIL, but I know someone who finally had to place their mom just recently. It got to the point where she knew she couldn't take care of her without actually watching over her 24/7, plus take care of her own 2 boys plus working. Even though her DH helped some, it was just too much for all.  Now, she is happier and way more relaxed, her mother is happier and is getting very good care.  Basically, she went back to being daughter, not worn-out caregiver.  I hope you find the same.

The Son in Law

My mother in law lived in our home temporarily.  She moved from out of town to an IL facility near us, but was asked to leave after less than a year due to her dementia symptoms.  We found an AL facility, but there was a delay in taking occupancy, then a state-wide COVID lock down.  We kept her at our home "for a few weeks," which became three months.

During that three months it became very clear that she could not live with us.  Her dementia symptoms included the delusion that we had stolen her house (she never lived in this town before), unrelenting need to be within a few feet of her daughter, wandering (one time resulting in police intervention), and perhaps worst of all, late night activities that included rearranging furniture, removing everything from the walls, throwing away everything from common areas, like bathrooms.  We were all sleep deprived and highly stressed by the time she finally moved to AL.

After a little over a year in AL, all the behaviors (except shadowing her daughter) worsened and she also began being physically agressive with other residents and staff.  We were given the option of moving her to memory care or leaving the facility.

She is in memory care now and we are hoping for an eventual adjustment to the living arrangement, but it is really hard on everyone involved right now.  My wife feels guilty.  My mother in law continues to get worse, but in times of realtive lucidity becomes cuttingly nasty - especially towards her daughter.  I hope that MC helps relieve the caregiver stress, but in this early phase there is a constant sense of dread in the air.  Dementia is a terrible way to end life and it has such a powerful impact on caregivers.

I guess I'm just telling the kind of story many here experience.

King Boo

It really doesn't require a 'last straw' sort of moment to place.

Taking the longview ahead and placing ahead of a crisis, severe decline or hospitalization can be a very wise think if one has this ability.  No need for the paralyzing 'guilties' to hit.

Placing ahead of need leaves adequate time to research facilities, plan financially, get your ducks line up with a CELA (www.nelf.org) and have your LO adjust at an earlier stage in the disease when they can benefit and enjoy Memory Care, which is lifestyle dementia specific.

That being said, night awakenings, exit seeking and incontinence are 3 frequent thresholds that lead to placement for many.

This disease can take an entire family or person out.  Recognized earlier, you have more power and choices.

Good luck.