Memory Care vs. Care at home

AlexandriaAlz

Hopefully I’m not rehashing a conversation I could find answers to elsewhere.

My dad (74, very active and healthy aside from stage 5-ish alzheimer’s) has had 24/7 at home care since a wandering-based hospitalization in October. He lived alone up until then, and i’m an only-child that lives many states away. 

We’ve been working with an agency and haven’t had a ton of luck finding consistent caregivers that can match his needs and activity level. Most of them have been primarily caring for people who were bed-bound or had little mobility. I travel to stay with my dad every other week and regularly “take shifts” and am seeing how hard it is to keep him safe when he’s constantly “organizing” and refuses help. The other week I made him tea and let him out of my sight for less than a minute and he ended up putting some cleaning chemical from under the sink in it instead of milk or whatever else he thought he was doing. Obviously I have been modifying his environment every time a new issue arises but managing him and the rotation of caregivers is starting to be an extreme strain on me and his other POA. 

A while ago we found a memory care facility we liked as a “just in case” option and after the tea incident I felt like it might be time to move forward. But now I’m getting pushback from some outsiders (his lawyer and another friend) that I should keep trying other home care aides and he’ll be miserable and waste away in MC (though i know the facility is much nicer than most). I’m at the point of having to take leave from my job and move to my dad’s state to keep managing the situation so getting this feedback feels like a huge step back.

I’m just looking for advice. Did it take a long time to find a good home care situation? Am I giving up too soon? If he does go to MC it would be a place he can “grow into” so he would start on a very active level and have all the safety measures we’re scrambling for at home. I’m just so tired if feeling like i’m failing him all the time.  

Quilting brings calm

Your dad cannot be left at home alone and you  have figured out that hiring caregivers isn’t working. Unless his lawyer and his friend want to be full time caregivers, their opinion doesn’t count.  The important thing is to keep him safe. MC can do that.   It’s the best option for you.

Elshack

I think it would be a wise decision to place him in memory care. My DH has been in MC since mid August and you will be able to rest knowing that your dad is being taken care of and will be safe and fed and clean. In memory care they will check him every couple of hrs and will get him involved in activities if he wants to be. 3 meals a day that are healthy. I am glad you have a place in mind that you liked and forget advice from this so called friend and your lawyer! 

The staff in good memory care places deal with all levels of memory loss. I can't imagine how stressful it is for you having to deal with in home care especially since you live far away. Since he is 74 you must be young and in your 50's. I don't think leaving your job and moving to your dad's state is a great idea unless you can find a similar job. Your dad could live many more years. My Dh has not regressed at all since he has been in MC. He is 92 and is eating very well and is at stage 6.5 Alzheimer's. They give him a shower every other day and he is always clean and the staff loves him. They are very kind.

Let us know what you decide. Sending supportive hugs your way.

ninalu

Hi AlexandriaAlz!

Your dad is fortunate to have you helping him at this time in his life. When I was living with my mom pre-pandemic and managing caregivers on-site, I found that plenty challenging. I can't imagine doing it remotely. 

As Quilting and Elshack have said, MC offers safety that protects him from the types of incidents you cite (putting cleaning chemicals into his tea.) We never realize how dangerous homes are until we see the kinds of mix-ups that can happen in dementia! In MC, your dad would have a built-in community of others (clients, staff, and potential friends) - so many eyes on his comings and goings - which for my mom has been a true gift. As my mom's dementia progressed, she lost the ability to spend any time alone and needed supervision 24/7. It has not been my experience that patients in MC "waste away." Quite the contrary, in fact. MC programming kept my mother's mind and heart active, and I think it saved her from depression and isolation. I would not have been able to provide MC-level programming for her in her own home. None of the in-home carers that I found were experienced with dementia the way MC staff is.  

The downside to MC that was important for me to understand - and was temporary - is that the adjustment can be quite difficult. My mom was early-mid stage when I got her involved in MC programming (first as a daycare program) and she was extremely resistant to it. She fought it wholeheartedly for every reason in the book. She didn't see herself as "one of those elderly people who needs help" and she didn't want to do activities that were "beneath her." Her loss of agency was a big deal for her and transitioning her took a fairly long time in our case. Various staff members embarked on a creative transition from her former 100% self-directed life to the highly supportive environment of MC. Just because it was hard didn't mean it wasn't the right choice for us. Mom needed support that we couldn't achieve at home. And obviously, she was not aware of the ways her judgement and safety were at risk. 

To me, it doesn't sound like you're "giving up too soon" by looking at MC now. Just be prepared that the transition could be challenging, but that doesn't necessarily mean it's the wrong choice. Your dad's lawyer and friend who are pushing back may not understand dementia nor the kinds of situations that you need to manage on behalf of your dad. 

Sending you and your dad good wishes as you take the next steps. 

AlexandriaAlz

Thank you all so much for your responses! As usual, this kind and supportive community has helped bring perspective to the situation.

Elshack, yes. I’m 38 and have been struggling with the balance of putting my own life on hold for my dad. It’s good to hear MC has been a good experience for you.

Ninalu, while I don’t think i’ll ever be 100% prepared for it I have heard this and I think the situation will be similar. The staff of the MC i’m talking to have been extremely helpful in talking about the transition period and how they’ll handle it. It’s for sure one of the reasons I picked them. It’s so good to hear that your mom is having a positive experience there once she settled in. I just want to make my dad as happy as possible while keeping him safe. 

Suzzin

Our experience with in home care was awful--dad actively and sometimes physically refused to have anyone in the house, and not surprisingly we never found a consistent team who would show up reliably. And with one exception I never thought any of them "cared" about either of my parents. So if you have a team that can help out until you find a good place for your dad, that's a big plus.

Like you we are at that "in between" phase where my parents can still manage at assisted living with lots of support (from me), but we see that they will need much more care in the near future. And yet, while I've toured all the memory care places around here, they aren't yet at the stage where they need to be locked in. If you have a place that can provide supported assisted living with the eventual move to memory care, that sounds like an appropriate option. 

ChicagoGal

I am in a similar situation minus some of the additional challenges that you have (living in another state, still working...).  My parents always insisted that they want to stay in their home until they die.  Dad passed away at home two years ago and mom is at home with live-in caresgivers.  She is now on the border of moderate/severe stage of dementia but very mobile.  Has walked out of the house twice with a live-in there.  Turned out that the latest live-in was drinking heavily,  I am looking for a Memory Care place right now since I believe that is the only place that can keep her safe from walking out (we have the doors secured as much as possible), fall down the stairs, put something inappropriate in her mouth...  I am exhausted mentally, emotionally and physically from having to manage the caregivers, the house, finances, medical appointments, grocery shopping... while not being able to leave mom alone for a minute.

JJ401

The sad truth is that many of us, for various valid reasons, will not be able to keep our loved ones at home. Our desire to do so it there, but reality is that we can’t. This is good advice from Quilting brings calm.

 Your dad cannot be left at home alone and you  have figured out that hiring caregivers isn’t working. Unless his lawyer and his friend want to be full time caregivers, their opinion doesn’t count.  The important thing is to keep him safe. MC can do that.   It’s the best option for you.

If you have powers of attorney, try looking into facilities near your home. Doing so will enable you to continue to work at your current job. While you need to look out for your dad, you need to look out for your financial future too.  

Iris L.

Move your dad close to you, preferably within 15-30 minutes or so.  You will still be on call for emergencies and you will be able to supervise the care and just visit without so much disruption to your own life.  Do not quit your job.

In the meantime, read the section on home safety at alz.org.  Remove all cleaning liquids and all chemicals, because they WILL mistake them for beverages or food.  Put them in a big Rubbermaid plastic bin and keep wherever he does not have access.

Iris L

Belldream

This post is so timely for me and I love all of the responses here so far. My DH has EO Alz and also Parkinsons. He was holding his own until about 2 months ago. He could feed, dress and groom himself, climb stairs, go out into the world (with me driving), go on long walks, and have conversations with me and others. Then 2 months ago he woke up suddenly unable to walk. His dementia took a deep dive too. He has been in the ICU followed by inpatient rehab at a SNF. They informed me last Friday that he was being released Tuesday (tomorrow). I was surprised at the short notice and the fact that he wasn't quite ready yet. He has learned to walk again, but he still has altered mental status, and doesn't really know where he is. He is also very unstable. He's fallen 3 times while there, twice in the past 5 days where they took him to the ER. Today was one of those days. Sorry for the long story here, but I am feeling lost about this decision to place him in MC. We are young, he was "fine" 2 months ago, everything happened so quickly. My heart wants him home with me, but my rational side feels certain I can't keep him safe. Thank you all for these thoughtful responses as they've given me perspective as well. I hate that we have to make these awful decisions.

AlexandriaAlz

I’m so sorry you’re going through that Belldream. When my dad was released from the hospital we were VERY worried about him coming home but he did rebound to his previous strength and got some cognition/clarity back just from being in more familiar surroundings. But that is when the 24/7 care started. However, it’s been a steady decline since then. 

This whole idea of the “right” time to go into MC is so murky and has been making my head spin. For me it’s the safety, his AND his care aides’. He has anger outbursts occasionally when he’s sundowning, mostly frustration with having people in his home. But if it got any worse i’d be worried they wouldn’t be able to handle him alone. Hopefully you’ll have some support when your DH is released, both emotional and someone physically there to just be a second set of hands. Researching and touring MC facilities was helpful in knowing there would be support available when needed. Many will have waiting lists so it’s worth finding one or two you like and trying to stay on their radar. We’re all here with you in spirit, walking this frustrating and sad path. 

awk98

If you found a MC facility that you like and don’t seem to be having luck with the people coming to help at his home than definitely move toward the MC option- especially if there are openings.