Pros and cons of home care vs memory care--and misperceptions? For educational purposes

Jeanne C.

M1 is correct about Medicaid spend-down for any condition that requires longterm care. But I think Linda makes a really important point. For diseases where it is literally unsafe to leave your LO alone, there are plenty of profitable businesses but not a lot of help if you can't afford to pay. MCs are so costly, many can't even begin to figure out how to pay, and those who do are often left holding the bag after using so much of their retirement savings to cover the cost. And then Medicaid is so complex that almost everyone needs a lawyer to manage the application process (more money!) - it's a system that seems almost designed to keep you from accessing it. I'm very lucky and I know it.

LindaLouise

https://alzconnected.org/discussion/comment/201246#Comment_201246

M1 - Thanks for catching that! I actually meant Medicaid, since Medicare, as you say, doesn't cover long term care.

ghphotog

https://alzconnected.org/discussion/comment/201001#Comment_201001

Bill, it all comes out of our retirement savings at 6k mo and will dry up in about a year and half. It's a big deal and very painful to watch that money get sucked out of our life savings. I could do the medicaid spend down but right now it's worth it to have her in a good private pay MC. I don't know what will be left for me when it's all said and done but that's a mountain I'll have to climb when I get there. Doing what I can to hopefully replenish some of it but we'll have to see in a year or two.

mrahope

I am struggling with this decision right now. I am getting ready to place DH. He has been having rages and it scares me. My DS, DDIL and both of my sisters have been saying that he needs to be in MC for a while. I can manage to pay for it, at least for some amount of time. The hardest part is that in between the rages and aggression he's mostly quiet. I need to constantly remind myself that he could actually hurt me, damage property or hurt someone else. I also need to remind myself that the progression cannot be stopped. The fear of his reaction and the guilt about placing feel overwhelming, making it hard to move the process along. It's hard not to put myself in his shoes. It's hard to truly believe his "real self" is no longer in there somewhere, no matter what anyone tells me. It's like so many tough choices we have to make in life, it must be guided by careful thought, even though emotions run rampant.

M1

Mra, this is kind of off topic for this thread, but: I fear that if you place him without addressing the rage, he may be aggressive in the memory care and end up in the hospital right off the bat. Perhaps you need to consider hospitalizing him first before placement? If you don't go that route, I would at least have a frank discussion with the MC admin about how they might handle such a scenario, so that no one ends up being unpleasantly surprised. I would hate for you to place him, have him be aggressive, have them call the police to hsopitalize him and then refuse to take him back. That would be the worst possible scenario.

RickM

M1 and Mra,

That's scenario describes exactly what happened when my brothers and I tried to place my dad. He originally agreed to a "trial stay" at a MC facility in another city close to my brother. He walked into his room, must have figured out what was up, and bolted into the street and tried to flag down a car so he could call someone. He was upset and aggressive with me. We ended up having to call the police and they took him to the ER in a small town without a psych ward. The ER supposedly gave him some anti anxiety meds and he was transported back to the MC. Again he got upset, pushed a caregiver down and took off. MC said no way is he coming here. We took him back to my brother's house. That night he took off and we were awakened by the police knocking at the door. He left the house while we were sleeping, was roaming the neighborhood, and a neighbor called the police. Fortunately they had our address from the previous encounter. Since he had injured himself and needed further medical attention I took him back to the hospital the next day and tried to figure out what to do. I then told the social worker at the hospital that I did not have a "safe discharge" (thank you Alzheimer's Help line). They agreed to keep him for 3 days of observation with an attendant present 24/7. Over that period I was able to locate a geriatric care doctor and another facility that knew how to deal with and help him. Make sure you get some help and advice.

A long story (and I gave you the abridged version :-) ) but I just wanted to reaffirm what M1 had suggested by providing an actual "nightmare".

The good news is he eventually settled in at the facility that specialized in dementia with behavioral issues and it worked out well enough for him and our family.

Best wishes,

Rick

mrahope

Thanks for sharing your experience, Rick. And also thanks for your perspective, @M1 The things that happened to your dad are EXACTLY the stuff of my nightmares, @RickM . We are to have a meeting with several members of the care team at the MC prior to bringing him there and I intend to be frank with them. I have already told them that he is unhappy and angry, but I'm going to be specific about his past behavior. It is only right. The nurse who came to our house already asked me (by email after the visit) if he was on any medicine to calm him, and asked specifically about sertraline. He isn't. Also, it's taken six months to access it, but we are supposed to go and see a geriatric doc (not sure if this is a psychiatrist) at the end of this month, which will probably be before I even have a date for MC placement, and I intend to be frank with them, as well. I hope these measures will help me and DH achieve a little more peace in our lives than we have now.

M1

He almost certainly will need medication to function in either environment--home or MC. It's not reasonable to expect a MC facility to be able to handle behaviors that you also cannot handle at home. I would think hard about a preemptive hospitalization. It is easier to get the medications right in a controlled environment.

JoseyWales

Pro of MC: Someone else could see the behaviors I was seeing and I got ACTUAL help. Someone was there when he was awake at night when he was only sleeping 3 hours a night. And he was safe in a locked facility so he couldn't wander away.

Cons of MC: For me, DH's MC is a long drive away, so the time driving is an issue. I feel the judgement from people that I've placed him (I can ignore it, but it seeps in anyway). Caregivers are constantly changing, and I worry about someone taking good care of him.

Denise1847

https://alzconnected.org/discussion/comment/200986#Comment_200986

Thank you.

Anonymousjpl123

Sorry, just have to add my additional, typically non-linear two cents:

Re: placement, I truly believe it is individual. For me, I am spending a crap ton of money. My siblings, who are relieved I’ve taken this on and question nothing, I am sure sometimes question this.

PRO: Here is my biggest pro, in spite of costs, of MC. Regardless of whether I quit my job and cared for my LO full time OR hired a caregiver while at work, I am certain I would be flooded and overwhelmed and resentful and, well… a lot worse. I got a taste if it in Assisted Living and my health went to cr@p and I hated her. I don’t have the skills or patience or lifetime of closeness with her to do it. Even when she begs to come live with me. There is also a lot of misguided judgment from those without alz/dementia experience.

CON: For others, that is simply not the case. It IS easier to have a LO at home, perhaps with less constant medical care, PT, and OT (btw I believe MC should provide this, mine does); but knowing first hand how LO is being cared for and being a constant emotional support.

I think a portion of a text sent to my mom’s only friend she stays in contact with, who often questions things without offering solutions (so fun… but I want her connected for my LO), sums it up:

“We are finding our way, with balance. She is deteriorating so please do not be alarmed when you call. She is losing words for things: your conversation may be limited (“please give the dog some coffee.”). But try to hang in there. Being at XXXX where they help her get dressed every day, out for 3 meals, and she has friends who truly understand IS making this easier - even though I know she complains. Weekends with me are also critical, so she feels connected. I will let you know when her land line is on but wanted to assure you she is ok. She tells me she loves me all the time. The other night she said “this is so nice. I am so happy.” Yesterday, with (her one MC friend), she said they had a great morning. Her and XXX trade clothing and laugh (send pic of us laughing). BUT she will never again be the (my mom) we knew. Back from vacation I understood this and - TRULY accepting this - our time together has been, in her words, “what I wanted when I moved here.” @harshedbuzz reminded me part of this may be her progression (she’s becoming easier), but so what? I’ll take it if it’s easier FOR HER.

I honestly believe that pros and cons are subjective: what matters is a person being safe and as comfortable as possible. Most everything else is about trying to stop the losses of this horrible disease - a losing, sad, frustrating proposition I spent a year with.

psg712

https://alzconnected.org/discussion/comment/202490#Comment_202490

Very insightful! Thank you for sharing the text to your mom's friend. Lots of good ideas in there. "Trying to stop the losses" is indeed a frustrating and fruitless battle. I'm learning to take today as a point in time - good or bad day, it's not forever and we will enjoy what we can (seeing a bird at the window, sharing a yummy dessert) while we have it.

For my family, placement in MC has allowed us those times together without the 24/7 heavy load and strain on the relationship. Of course, I am still responsible to supervise the care she receives and to be her advocate, always - but placement allows me to be her daughter and not just a care manager.

Anonymousjpl123

@psg712 100%. So glad to be navigating this with people like you.

Carmen M

This thread has been very helpful to me. I also live in Washington state and checked into MC pricing. It is just so expensive that we cannot afford it. What does one do? My LO is a disabled veteran so I have applied to the Veterans Home in Port Orchard, WA but the waiting list is extensive. That is my only financial option when the time comes. Hopefully, I will not need the service yet as it's not affordable.

M1

Hi carmrn and two suggestions: call your local Council on Aging about any resources that might be available to you. Also talk to a certified elder law attorney about how to qualify him for Medicaid. That might give you other options.