My mom has dementia and I'm having a hard time spiritually. Any advice?

I wonder why so many people think that memory care will "crush" their loved one.

While it would have a bad effect on someone with normal cognition to be placed in memory care, that's not necessarily the case if a person has memory deficits. It's nice if they're somewhere that understands their cognitive issues, provides for them around the clock and keeps them safe. That's not "crushing." That's kindness.

Years ago, a teenager who was close to our family was distraught that a friend of hers was being treated at the state mental hospital. The friend had told her that it was "the best place I've ever been." My teenage almost-family member cried and said, "How can she think a mental asylum is the best place she's ever been? How can she live like that?"

I counseled that her friend was finally getting help for her problems and that was making her feel better. She was where she needed to be. That was true. The patient was discharged after a short inpatient treatment period and went on to live a normal life.

We tend to think about things as if everyone is normal. If they're not, they need to be where they need to be, and that isn't a bad thing.

My Daddy was the best guy ever! He treated me like a princess. When he got ALZ and I had to take over I had to make very hard decisions. Daddy thought I was trying to poison him, he called me rotten. I had to work and I could not take care of a man 6'2" at 246 lbs. So when he fell and could not take care of himself. I talked to a social worker and I agreed on a group home. OH MY GOODNESS! They were great! I treated them like family and they treated my Daddy and me like family. If there was a problem they called me, even late at night or early morning! This also gave me rest and I was able to see how he was healing or declining. For example, I showed up one day and he did not seem in his right mind even though he had ALZ. I asked the caregivers to request to test for a UTI and sure enough he did have one. The caregivers couldn't see it but with my fresh eyes I could see something was wrong. Also, he was close enough I could see him everyday, this is what was great to have him in a group home. It is not a bad thing to have your loved one in a facility - just visit them regularly and at different times. Prayer for you!

You did not cause this disease.

You cannot fix this disease.

Yes, it's a terrible disease, and it comes to the rich, the poor, the famous and the infamous. It destroys the brain and leaves in its place someone nearly unrecognizable, but in need of care.

IMHO your mom should be placed in care now, and that has little to do with how sweet or how not sweet she is to you or to others. She needs care you cannot give. You are not a felon and you aren't god; not everything can be fixed, and you won't be fixing this. There is no reason for guilt, but there is good reason for grief and for the shedding of many tears; this loss and devastation is worth the grieving. You will be free to visit your Mom as often as you can, to give her what comfort you have to give, but she has lived a life, and you have a right now to live your own.

My heart goes out to you and I am so sorry.

I am so sorry. You are not alone. Many here are grieving just as you are.

Even people with terminal diseases like cancer have good days and bad days. That doesn't mean you don't treat them only on the bad days when they appear sick.

Memory care isn't some kind of prison. In fact, it's the best thing in the world for people with dementia, because they're surrounded by caregivers with special training who keep them occupied and mentally stimulated far better than you can at home. It's CARE, and it's a good thing.

Don't feel obligated to delay your mother's CARE until she's too far gone for it to benefit her.

1. Just because something is hard, doesn’t mean that it’s not the right thing to do.

You need to take care of your own health.
You can’t sacrifice your health because Mom is “sweet” today. The needs of a person living with dementia just get greater.

And,

2. Not everything can be fixed.
Dementia can’t be cured.
MS can’t be cured.

That’s just life.
Grieve, but also, move ahead.

We hear you, and we all either have been there, or are there now.

You decision making needs to be based solely on facts about your mom and her condition, not about your feelings or reactions to what she says or does now, in the moment.

Both she and you need to have safe accommodations that are as stress reduced as possible.

Putting someone who needs the safety, structure, and surveillance of memory care cannot and does not crush them, and it CAN free them to a new level of freedom and comfort.

Seeking out the best MC facility you can in your area can help you prepare for future decision making and increase your confidence about decision making in general.

Most of us here have been where you are now. We care about what you are doing.

I'm a little confused by your wording in your post about having a hard time spiritually, as nothing you wrote below that notates that, but I will say that since you yourself are not in the best of health, that you now have to do not only what is best for your mom but also what is best for you and your health.
Will it be easy? That would be a hell to the no, but no one ever said that life would be easy, so I would start your search now for the appropriate memory care facility for your mom, where she will receive the 24/7 care she requires and you can get back to just being her daughter and advocate.
You are correct, dementia is a horrible disease, and sadly it only gets worse as time goes by, so best to get your "ducks in a row" now, so mom can get adjusted before she gets too bad off.
I wish you well in finding the right facility for her.

If your health degrades, then your Mom will have to be transitiioned somewhere anyhow, and you will be wrecked as well. What's the point of having that happen when there's a solution? When the airplane is losing altitude you put your oxygen mask on first and then hers.

Your Mom needs to be assessed as needing MC. Are you sure she isn't a candidate for AL? Also, does she have the funds to pay for AL or MC? Medicaid requires that people qualify based on both financial and medical need: in most states it only pays for LTC.

Are you her PoA? Or guardian? If not, and she doesn't yet have an actual diagnosis of cognitive/memory impairment, then you may have a more difficult time getting her into a facility without her cooperation. Lots to think about and if you have any more info to provide us, it would help us to help you better.

Making this decision is not about you, it is about what is best for her. Believe me she will be upset, but not crushed and soon she will forget all about it. That is the one benefit of dementia, something that should be forgotten are.

Moved my step-mother from AL to MC, the first few days she was upset, then she didn't remember that she had been moved.

You are focusing too much on what you perceive she will think about you.

I think you should realise that ‘super sweet’ is not ‘normal’. Few of us are 'super sweet', and it’s not how things have gone in the past. 'Super sweet' is a choice – perhaps M’s take on what’s in her best interest. Why is she not treating your sister the same way? What has your sister done wrong? If ‘super sweet’ to you is a result of the ‘seroquel’ (if that’s what you meant), why isn’t it working with your sister?

You say that M “has been hard to deal with most of my life”. She is still difficult to deal with, in a different way. My daughter has MS, and she would not be able to function on the sleep regime you describe in your profile. You need to look after yourself first, before working out what you can do for her.

Memory care will NOT crush her, and you can’t control what she thinks. If you visit when you can, she should not “think you left her”. Of course, if this has all been a manipulation to try to induce you to keep her with you, she may be furious. But that is not being ‘crushed’.

Stop worrying about a your own behavior. She’s probably not worrying about hers.

Dementia can be evil. I’m so sorry that you are going through this difficult time.

I am sure that you know that this situation will not improve with time and that it will only become worse as the disease progresses.

When I was touring facilities for my mom I asked when is the best time for placing our family member. Everyone responded by saying that a person always adjusts best when they were placed before it became absolutely necessary to do.

Please at least gather information on assisted living and memory care facilities in your area now so that you will be prepared for when the time comes for you to place your mom.

Also remember that your health is equally important as your mother’s health.

I know that this is upsetting for you. It’s never going to be easy. Don’t prolong the agony for either of you. There are plenty of people on this forum that will offer support.

Do you have any particular questions that you would like to ask?

Some of us are actively caregiving and others like myself have gone through it and our parents have since died. We will help you out as much as possible.

Wishing you peace as you continue on with your caregiving journey. Take care. Sending you many hugs.