A few thoughts on Memory Care

Anonymousjpl123

I recently had to move my mom from AL to MC and wanted to share a few thoughts. I’ve noticed that my perception of MC, and that of others who are not there or don’t have a loved one there - is actually kind of negative. People talk of it like it is some kind of prison where people deteriorate.

I have to confess: this may change, but as of now my mom is HAPPIER there. I don’t know if it’s because it’s easier, or because it’s less stressful, or there’s more staff attention.

She has NPH and we are waiting to find out whether a shunt will help. She’s on the borderline of needing it - having gotten through a mental break, most people think she could be ok in AL. I’ll make that decision when we know more about her condition and what’s happening physically and mentally with her.

But seriously some people - even in the AL side of the facility - have said “why did you move her so quickly?? Get her out of there if you can!” Etc.

Yet I am there a lot and very involved in her care; and the staff are top notch. The residents are actually a mix of higher and lower levels of functioning. It’s just weird there’s this myth.

I’m not minimizing how painful the transition to MC is, how hard it is for some people, how painful. What I’m saying is that this experience has forced me to rely on facts, actually visiting places, and talking to experts more than the sometimes strong opinions of people who don’t know any of the details about my situation.

It’s so hard to make these decisions. I just want to say that Memory Care is not always prison, and it’s not always bad. I hope this comforts some of you who are feelings scared and nervous and guilty about considering it.

harshedbuzz

@Anonymousjpl123

Amen!!

My dad actually got better care in the MCF. For a lot of reasons-

Unlike using agency aides, one didn't always know who might turn up if there was a call-out. At the MCF, the 2 primary caregivers on the first and second shifts were the same ladies. One was off Fri/Sat and the other Sun/Mon so he always had a familiar aide available 7am-11pm.

These women opted to work in the MCF; it was like a calling for them.

They brought both training and experience to the party along with compassion. I learned so much from them.

Dad's emotional intelligence (spidey sense) allowed him to see them as the competent professionals they were which meant he cooperated when they needed to do any hands on care. He ate better, took his meds more regularly, was cleaner and better groomed in their capable hands than he was with either my mom or I trying to cajole him.

PLus, he got my mom back has a wife rather than caregiver/jailer.

He wasn't much on activities aside from music, but they were happy to chat with him. My aunt, on the other hand, loved the arts and crafts, the lunches out and therapy dog visits. She flourished in MC.

HB

Anonymousjpl123

I wonder if on some level your dad picked up on the fact that he was safe, people were looking out for him, and he was not going to be in situations he couldn’t handle. Maybe that gave him a bit more room for you, your mom; and others.

im still very much in wait and see mode with my mom. But I’m so glad I trusted my gut and put her there. I think it must be scary to have your cognitive abilities go in and out. I’m glad we have a model where she’s safe. It’s not only better for her but me, which ultimately is better for her.

ESkayP

Thank you so much for this post! I also have had a negative view of MC, and I don't even know why or where my impression came from. My mother will be moving from AL to MC, and I was initially very upset about it. I'm so glad your LO has had a good experience. I will keep an open mind.

Jo C.

Anonymous; thank you for your good input. If you have time, there is a person on the Caregiver's Forum; BookBuffBrex, who is contemplating moving her mother from ALF to MC and is asking for input, if would be lovely if perhaps you could give a bit of experiential wisdom.

Thank you for considering doing so.

J.

Anonymousjpl123

@Jo C. definitely - will take a look!

sbp5989

Yes, agree there is much negativity with MC; the individual facility can make or break it based on our experience. We found for my Mom there was a 'settling in' period. Also, I think a lot of that negativity comes from other residents in the Assisted Living in the building. When I take Mom for a walk to the courtyard or around the building and she says weird things, many people tend to roll their eyes at me or say 'you poor thing.' Mom said to one person 'doesn't my hair look great?' Truly it was a mess but the lady she asked just looked at me and actually rolled her eyes so I said 'Yes Mom your hair does look great!' Many can't deal with Alzheimer's until they are directly impacted and even then it can be hard.

My Mom was finally settling in after 3 months into MC but now we are faced with whether we go palliative/hospice route or take her to the hospital to get her iron counts back up (has really bad anemia and they can't figure out the source of the blood loss.) They did an endoscopy and didn't find anything. Her trip to hospital in May I let them do the blood transfusion but they also wanted to do a colonoscopy (she is 86 and in late stages) and I said no. They will push for a colonoscopy again if we go to the hospital next week. I just remember how confused and stressed she was in the hospital and I just don't see that as a positive outcome. These decisions are hard but right now she is being cared for in memory care and that is exactly where she should be.

susieoboe

My mom is getting better care at a memory unit. There are more caregivers per person. She seems to like it there. She is one of the more able people living there. I think she gets more attention and even enjoys the smaller quarters — perhaps more manageable? She gets to have her cat, which is wonderful.

MN Chickadee

After a bumpy adjustment period my mom did so much better in MC than at home. You are right, it's like she knew she was in a situation she could handle and therefore it opened up space. The routine and "groundhog day" way of life helped her thrive. She wasn't so anxious and had better stamina for visits with family and simple activities instead of worrying about what life or people would throw at her next.

terei

More likely as not, as the caregiver, you are underestimating the PWD’s progression. They should be placed based on ‘their worst day’ + not their best. It is very common that a person moved to AL must be place in MC soon after because they no longer have someone monitoring + helping them 24/7 + their progression is much more advanced than the caregiver can or will recognize.

MC is more expensive than AL at the same facility

pwd

psg712

So true about perceptions of MC. I am working on moving my mom from AL to MC, and getting the same distressed reactions from family who don't want to believe that her dementia has progressed to that point. But it has.

The hardest thing for me about this move is the thought of separating her from her beloved cat. The pet friendly policy of the AL was a big selling point when she moved there from her home 17 months ago. But I learned today that the director does not approve of her taking the cat to MC. His reasons all make logical sense to me. But it will be hard on her, and I will look like the most uncaring person to family and friends who know how important that cat is to her.

Any suggestions? Susieoboe, how does your mom's MC deal with the cat? Has anyone else seen an MC that allows residents to keep cats?

harshedbuzz

@Merla said:

This is a pretty basic question but is MC more expensive than AL?

Yes. Where I live the higher level of staffing/training means that AL is considerably more than MC. Many for-profit and CCRCs do offer both as well as Personal Care where I live. A hospitality-model AL here is generally "Independent Living+; a daily well-check, transportation, meals and housekeeping are included with a host of amenities. This is a great fit for elders who are mostly self-sufficient but should drive and don't want to cook for one. Personal Care is a level between AL and MC; it's meant for people who may have mobility or vision issues and need help with hygiene, medication management and such. MC is similar to PC, but has better staffing to meet the needs of a range of abilities. Of these, only MCF typically allow a resident to "age in place" although they may require the family bring in hospice or additional personal care aides at some point.

For comparison, a number for-profit PC/MC facilities I toured had similar "apartments"-- like a studio but the MC ones didn't have kitchenettes. The activity and dining spaces were similar but those living in the MC side, which was secure (aka locked) did not routinely have access to them. In some places, family or an aide might take their LO to the hair salon or to an activity. When my aunt was newly into MC in the middle stages, she was still delightful and well-mannered and spent most of the day on the PC side doing activities and meals until she progressed into the later stages.

For pricing comparison, one facility with both I liked charged $4500 as a base for PC and $7200 as a base for MC. They had tier pricing, so there were additional fees for med management, bathing, incontinence care, 2-person lift.

can someone with a dementia diagnosis still go to AL?

In many cases yes. Sometimes the sales agent will sense a family is on the fence and will offer AL as an option knowing it's likely the PWD will need to move within the month. Will they thrive there? Probably no. Will you be asked to move them? Probably sooner than you'd like.

If a nice facility has both AL and MC, Which is preferable for someone with moderate dementia?

Care needs on their worst day need to drive the decision. If the person sundowns or is exit-seeking, you likely won't be offered the option.

That said, my family made the mistake of placing my nasty aunt in a lovely AL. I don't think the folks making the decision appreciated how much scaffolding her daughter was providing day-to-day for a lot of reasons. It went very badly. She was unable to track time and either missed meals or spent the day in dining area so as not to. She couldn't keep up with the activities which were not dementia-appropriate nor the conversation of the other ladies there would were quite mean to her. Worse, she had a fall in which she fractured her hip and wrist and wasn't discovered until the next well-check. They think she may have been on the floor for up to 16 hours which was quite traumatic. She had an alert device but didn't call for help.

HB

Anonymousjpl123

@psg712 I am so glad you made the decision. I had so much flack - not from family but others who didn’t know my mom as intimately or see her as much - when I moved her. It has been rough on some days but the good outweighs the bad 1 million to 1.

That said, right before her move my mom wanting a cat, and was denied at the shelter due to her dementia. It was heartbreaking - she had bought cat supplies, told everyone, etc. She has since mostly forgotten. The key seems to be helping PWD feel connected and close to comfort. It sounds really stupid but my mom’s paintings, books, photo albums, even pillows and throws etc. give her that.

Is there something besides your cat your mom loves that she can have? That’s the best I can offer.

@Merla MC is more expensive but is more usually “pay one price.” Where I placed my mom is on the high end price wise but is still cheaper than it would be for her to stay in AL (her place has both) and have someone come even just for 5 hours a day. I have for sure saved money with the move even with the price increase because of the enormous difference in the level of support.

I feel lucky, and my mom is starting to have real moments of liking it and envisioning herself having a life there. Our visits are less about managing crises and more about time together. It has been a life saver.

CaliforniaGirl-1

I posted about this a while ago. MC was a much better option for my LO. We resisted and were upset as many people are. But the smaller footprint and better care levels were what my LO needed. She was able to navigate it in a way she could not in AL. Also, we were upset that she had fewer choices about meals and so forth but it turned out that she was no longer capable of choosing.

Like everything with an elderly parent with neurological deficits, it changes. But I feel my LO is getting the care she needs. I think a lot of the bad feeling about MC was more about having to let go of our vision of what this phase of life would be for our LO and accepting what was.

CaliforniaGirl-1

There are a lot of people in AL who may have more severe dementia than some of the people in MC. I think one of the big dividers is if they are exit seeking.

cascheer

My mom is in a place right now where most people are nonverbal, but she likes to talk a lot. I think she notices the difference between the other people and herself. She’s very unhappy there. I am between a rock and a hard place though because I have two brothers who think she would be best in a facility instead of in my home. I need to find a place for her to live where she can communicate with the caregivers and they will treat her respectfully. We live near Woodland Hills, CA if anyone knows of a good place.

towhee

Hi Cascheer, welcome to the forum. It is hard when siblings disagree on care. Sometimes siblings are concerned that the sibling caregiver's health is suffering. I am sorry that your mom seems to be unhappy, are your siblings open to a move? You are right that good staff is the key.

You will probably get more responses if you create a new post of your own, sometimes if you post at the end of an older post it does not get seen.