At what point do people typically seek assisted living/memory care?

When it reaches a point when it is no longer safe for you or the person you are caring for. That is the time when you need to consider placing someone in a facility with the appropriate level of care that they require.
Generally with dementia that would be Memory Care.
If there are medical problems or in many cases if the person needs equipment to safely transfer them then it would be Skilled Nursing. (aka "nursing home")
If the person is cognizant and can manage some aspects of their own care then Assisted Living may be appropriate.

When I began my Journey with my Husband and his dementia I asked during a Support Group "when or how do I know when it is time to place him in Memory Care"? I was told by a wise woman there that when I start asking that question in earnest then it is time.

So I based it on SAFETY.
If it was no longer safe for HIM for me to take care of him at home I would have placed him.
If it was no longer safe for ME to care for him at home I would have placed him.
Safety is not just physical but mental/emotional as well. Each person has their own line in the sand if you will.

Placing someone in AL, MC or SNF is not giving up but the difficult decision that their care is more than you can handle at home.

Usually ALZ is the last thing checked, because outside of brain imaging and eliminating all other possible causes, there is no real definitive test. Other medical issues that can cause dementia-like symptoms are:

- UTI
- thyroid problems
- over or under-medicating
- vitamin deficiency (usually D)
- dehydration
- diabetes
- high blood pressure
- stroke
- alcholism
- concussions (CTE)
- brain tumor
- other

ALZ is one type of dementia. It is genetically inherited (but even if it's in your family one must still inherit the gene, you don't automatically get it). Other types of dementias are frontal temporal, vascular, and others (you can look this up).

If I were you I would discount all other possible causes for her symptoms. A cognitive/memory test done by a primary doctor is not the same as a neuro psych exam. But even so, if it is ALZ or dementia, there is no cure but having an accurate diagnosis is very important.

Most types of dementia can’t be 100 percent diagnosed until after the person has died. As to when that can happen, it always is years, with no one knowing how many, but knowing there is no cure for this either.

I'm confused when you say, " Part of me wants to keep trying to find the culprit so she can have her life back." Your mother was diagnosed with dementia 4 years ago, and also has Muscular Dystrophy. I don't know anyone who's 'found the culprit' for dementia, and even if they have, there is no cure for it, especially 4 years down the road when the typical dementia has a 5 year lifespan to it. We have people here on the forum who will insist 'a good olive oil from a family farm' will cure dementia b/c it 'comes from leaky gut.' Were that true, I should think doctors and scientists studying Alzheimer's and dementia for years would have figured that out LONG ago, saving us and our loved ones decades of torturous lives in the process. Sigh.

I feel for you and what you are going through with your mother. I also understand your desire to 'fix' this situation for her, despite the fact there is no 'fixing' such a situation. In my opinion, as a daughter to a mother who went through a long stint with dementia, the best you can do is try to make her comfortable. Accept her diagnosis and work WITH it, rather than try to fight against it. Dementia only progressively worsens with time, as I've witnessed with my own mother, unfortunately. She went from a snarky and vibrant woman to a confused and wheelchair bound shell of her former self in 5 short years. I had to move her into the Memory Care building of her Assisted Living Facility about 3 years prior to her passing, when her mobility issues COMBINED with her advancing dementia became too much for the regular AL to handle.

Assisted Living HELPED my mother b/c it broadened her world; it gave her a social outlet and friends to kvetch to all day long. 3 meals a day to eat with others and complain about (oh the portions are soooooo small they wouldn't fill a cavity), activities to occupy her time, movies to watch, outings on the mini bus to go on, music to listen to by live bands, on and on the list goes. When she segued into Memory Care, life was shrunken down for her, which wasn't a bad thing in reality. Why? Because her mind could no longer comprehend how to work a microwave or set a temperature control for the heat or the A/C. Life got too complicated in AL so the move into MC simplified life for her; things got easier.

I didn't feel 'guilt' b/c I didn't create her disease or her old age that brought with it all these issues. God granted her a long life and THAT brought with it infirmity and disease. It was my job, as her only child, to see to it that she was safe and well cared for. Something I could not accomplish on my own, in reality. The AL and the MC were able to do for her what I was unable to do alone, truthfully. What I COULD do was go visit her, and bring her my love and my time, small gifts, snacks, blouses with matching costume jewelry so she could look nice, things like that. I could call her and talk her off the ledge (sometimes), I could advocate for her with doctors, staff, hospitals, rehabs, etc etc. I could be the voice she lost to disease. That's what YOU can do for YOUR mother, too. Lose the guilt now and let logic and reason take over where emotions are leading you now.

There is no 'saving' your mother from the disease process, but there is saving her through love and advocacy in the care management system. Be there with her, every step of the way, as she goes through this end of life journey. It's the hardest thing you'll ever do but it's also the most rewarding. God bless you and help you through.

Finding the cause of your mother's dementia is unlikely to do anything to reverse it and "give her her life back.". If her doctors are on top of all of her medical conditions, they are hopefully already treating those conditions. If she has been diagnosed with Dementia for 4 years, it is probably really Dementia, apart from any correctable conditions. Dementia does not have to be Alzheimer's.

Sorry to hear your problems.

Was Mother's Muscular Dystrophy diagnosed recently? I know MS & Parkinson's Disease effect cognition & memory in later more severe stages - I am wondering if Muscular Dystrophy could also?

By 'negative' Alz test, do you mean a screening test? Eg MMSE: Where are we today, spell 'world' backwards etc, CDT: draw a clock face, or another similar short test? An extensive Neuro-Psych exam? Or some sort of brain scan?

I hope having the right diagnosis helps. It can be a starting point for studying up & finding a local support group for caregivers.

Really and truly, I am not trying to be a smart aleck here, but in my experience the answer is usually "too late." We tend to put off the unpleasant, we tend to ignore worsening problems. Most of us don't want to think about our loved ones in institutions, however good they may be. That means that most of us tend to make rushed decisions because we are on the brink of disaster, can't wait for an opening at the preferred institution, don't have time to do the proper research.

My sisters and I did this with our mother and it looks like you may be doing this with yours. It is ok, you are trying hard to do the right thing. However, it looks like you are not really facing up to the reality of your mother's situation. Yes, you are in a bit of denial. It is definitely time to check on the facilities that may be best for your mother. Get help from others who have gone through the process and from social workers at your state and local agencies for assisting the aging. A good attorney who practices in the area of elder care might also be a good thing.

For others reading this post who think they have lots of time, probably now is a good time. Even if your loved one (or you, yourself) is relatively young (60's?) and very healthy, changes can come suddenly. Get familiar with your local options, the financial issues, signs you should watch for. One of the biggest mistakes we made was not to put together a list of "hard line" indications that the time has come to proceed with Plan A or Plan B. We had thought to come up with plans for physical or mental decline, but those were based on "when the time comes" without really defining what would indicate that the time had come. "The time" became a sliding non-measure that was always down the road a ways. Mom would have been more comfortable and we would have been less overworked, if we had been much more critical and indulged much less in hopeful thinking.

I can second everything lealonnie1 so perfectly said! There is no fixing it after 4 years. At this point I agree, piviot and become her advocate. Fix what you can. Find a MC unit for her and do all the things lealonnie1 listed, it is still almost a fulltime job, but you can know both of you are safe. Please do not feel guilty, instead work through the grief you are experiencing as you loose your Mom one painful day at a time. It is a long heartbreaking journey.

You seek memory care when you are no longer able to provide care by yourself. It is to difficult for one person.

Unfortunately Your mom’s condition is degenerative and not going to get better.

Start planning now. Finding care can be a lengthy, complicated, expensive process. Do not wait.

Our family tried everything to care for our mom when her condition became like this and we could no longer do it.

It was very difficult to get her care and we had many complications.

When you can not do everything your loved one needs
AND care for yourself
(and other family members),
it is time to look for help in other places.

We decided assisted care facility when I felt emotionally at my breaking point. Life is so much better for mom and me. She actually improved.

When you are trying to figure out the cause of her dementia, I assume you mean with her doctor? I worked with a geriatric specialist. She did blood work for thyroid and B12 - both were fine. She reviewed her meds and worked with her regular doc to make some modifications since one or two she was on can cause confusion. Didn't help. I took her for a sleep study to find out she had severe sleep apnea. But due to her dementia she was unable to figure out how to put on the mask, even after being shown over and over. It was just too late for that to be successful though I really hoped it would help her confusion.

Have you already had these type of things done? Is so, there is probably not much left to check out and you may have to accept that this is as good as it's going to get. Bad answer, I know, but it could be your new reality.

Good luck.

OH and as to when to seek AL or MC:

AL can be done fairly early in the journey - when they can no longer manage their meds or cook for themselves

MC is more for when the dementia becomes more pronounced. If they are unsafe - some like to wander. If they have incontinence. Or when they just become too difficult to care for at home, for a variety of reasons.