I am taking care of my Mom full time (24/7) because of her dementia and macular degeneration. I am a 62 year old male and she is 88. I've been her caregiver for almost 2 years. I realize that due her dementia she sometimes forgets our roles. She tries to treat me as her teenage son and sometimes thinks I am my stepdad. She doesn't like me leaving anywhere by myself and when I do, she often calls me to ask where I am and why I've been gone so long even though it hasn't even been one hour since I've left. She has lately even tried forbidding me to do things.

I have been a single adult male for many years and really liked my lonely life. This is getting harder and harder to do.

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Instead of laying some big fat guilt trip on you, I'm going to say something else: Oftentimes it's TOO MUCH to be caring for a parent 24/7, especially when that parent has dementia and other health issues making life a total nightmare for all concerned. Caring for a loved one with dementia normally becomes IMPOSSIBLE at a certain point, and Memory Care or Skilled Nursing becomes necessary. "Love" has nothing to do with placing a person in care....necessity DOES.

I work as a receptionist in a Memory Care community. Every single day I interact with sons and daughters, wives and husbands, and other loved ones who have had no other choice but to place their family member into care. They came to the realization that they could NOT do it anymore. That the 24/7 care was killing THEM, and that they may pass BEFORE their elder. So, for all the guilt inducing comments you may get here, lay them aside. The truth of the matter is this: Your mother will get to interact daily with people she can relate to. She will have 3 hot meals a day and 3 snacks to enjoy. She will have activities to participate in that will make her happy and keep her occupied. When she tries to wander out alone at night, she won't be able to. When she takes her clothes off in the activity room and tries to urinate on the upholstered chair, thinking it's the toilet, the caregivers will gently & respectfully re-dress her, take her to the real toilet, and give her a hug afterward. She will be cared for and safe. YOU will get YOUR life back and can go visit her daily if you so desire.

It's a win-win situation for BOTH of you. Carefully consider that option, my friend. And leave GUILT out of the equation. It's a useless emotion of no value.
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People who have dementia have lost their memory. They are often confused. They often mistake people's identity and even totally forget who their family members are. I'm not aware of any way to change this. It's due to damage to the brain and is part of the progression. I'd explore getting help for her, since leaving a person with dementia alone, except for the early phase is very risky. She may have little insight into what your life is about, due to her condition. Also, she may be scared and confused about the way things are appearing to her now. That may be why she wants you nearby. There are some good books out there about caregiving someone with dementia. One is called The 36 Hour Day and there are some good videos on You tube by Teepa Snow about managing tough issues with dementia patients.
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Invisible Dec 2, 2019
Sunnygirl1 is directing you to the right resources. You need to recognize the way dementia works, what to expect at each stage and what your mother needs to be safe and comfortable. Dementia produces anxiety. Put yourself in her shoes - when you can't trust your own judgement, who do you trust? I found The 36 Hour Day to be extremely useful. Easy to read and lots of tips. Dementia occurs differently for everyone.
You cannot get your mother to remember anything. She has dementia.

You cannot really expect her to recognise faces reliably, either. I believe there are specially adapted spectacles you can get to experience what various eye conditions are like to live with. Try the macular degeneration one for yourself and see how good you are at identifying individuals at various ages.

And this is going to get worse.

So... not to depress you... what will you do? Have you researched other care options for your mother?

What's this about the divorce, by the way - your stepfather left your mother and divorced her, what, *because* of the dementia? Seriously???
Helpful Answer (9)

I had the same feeling as you. Feeling like I lost myself because I was now ‘mom’s caregiver.’

It’s so hard being in the caregiver position.

Don’t feel guilty taking a break. All caregivers need breaks.

Do you have any help in caring for your mom? I just read your profile saying that you shut down your business to care for your mom. I appreciate that you care about your mother but that is a huge sacrifice!

Is it possible for you to place her somewhere to be cared for so you can resume your life and then you will take the position of being her son back, instead of the very difficult role of caregiver?

This is especially hard on you due to her having dementia.

I cared for my mom for a bazillion years. I did burn out. Please take care of yourself. Giant hugs!
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Basically, you don't. Given that even WITHOUT dementia Moms are Moms (as the 77 year old Mom of a 57 year old "girl" who has a 21 year old "boy, I can tell you this). Then you mix in the disease and she also gets you confused with every other male in the family. Sorry, but her mind just isn't functioning right, and you can't change that. The more you try the more frustration for you both will result, and that will only cause further confusion. My heart goes out to you.
I think that you are reaching the time that you may understand your own limitations. Please pay attention now to your own life. Do the best you can for your Mom with placement, with visits. But it is the job of a parent to raise us. It isn't our job to give the rest of our life up to the parent. At 88 she has a good decade left to live in some likelihood, and you will be 72 by then.
I am wishing you the best of luck. None of this is easy. It is all very very hard.
Helpful Answer (8)

You can not change the time that is in her head any more than you can turn the clock back yourself.
The only thing you can do is change your reaction.
If this brings up bad memories try to change the subject or focus on something good from that time.
If she thinks you are her recently divorced husband you can try to gently remind her that you are her son..or you can just go along as long as this is not upsetting to her or you. You can then try to deflect and refocus her on something else. A favorite snack maybe?

When you leave, is someone with her? If not maybe it is time that you have a caregiver come in to help.
she calls you because you are her safety net. She can trust you and she knows she is safe with you.

What types of thins is she not allowing you to do? If it is related to her care maybe having someone help would change her demands.
If it is personal things she will not let you do you still need to live your life. Having a caregiver come in will give you a break so you can go do things that you would like to do. And she does not need to know that you went to dinner and a movie with a friend you can just tell her you are going out.

This will get harder and harder. Have you figured out at what point you are not going to be able to do it all and will have someone come in, or would you opt for placing her in Memory Care
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In most Alzheimer's clients, their memories slowly erode, starting with the more recent memories and marching backwards to the more distant memories. She seems to be at a "place in time" where she remembers you as "the teenager" and if you are the "man" then you must be her husband. Try to get her to see you as her friend and caretaker if she gets upset "remembering you as her 62-year-old son".

Since she has macular degeneration as well, she can perceive light and shadow but has problems seeing details. So, it may be hard for her to perceive the passage of time. It probably seems scary to her to not have anybody nearby when she is awake.

It appears you need more "alone time" and mom needs constant "together time". Try to create time slots for yourself to get the "alone time" or "off duty" you desperately crave. If mom can't handle it, you may need to get helpers to be with her during your times away. Ask for help from friends, family, members of your faith group/church... and paid help. Home health aides and adult sitters can be found through home health agencies. Usually the aides will work for 4 hour blocks of time. They can help with dressing, feeding, bathing, cooking, and light housework.
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Bumberella Dec 5, 2019
Beautiful response and spot-on accuracy from someone that has been in the same situation as a caregiver for someone with dementia, macular degeneration (aka AMD) and significant hearing loss.

And if I could only add, close your eyes and try to imagine their world, dark, scary, and grasping for the only stable thing they know. It might not change the situation but it might change the perspective.
Yes, you give up a lot of personal freedom as a caregiver. Just accept it. It's less stressful on both of you. When dealing with dementia, you learn to live in the moment because nothing sticks and each day you don't know what you will be dealing with. The best advice I ever got: "Validate and re-direct". Whatever your mother says, validate her feelings and then redirect her to something else. When she passes away, you'll miss it. Also keep a sense of humor. Try laughing together.
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I'm now reading the 36 hour day. Thanks for the responses. 😎
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Wow! You're the man! We are about the same age and have same-age mother's with dementia. I likely would have done what you are doing had I lived in her town, but I have a career/life in a city an hour+ away. Early-on I decided to do all I could to keep her home without giving up my single, serene life. So I hired caregivers -- honestly, that wasn't great -- I was managing them AND my mother from a distance. That said, caregivers could give you some could get away. I would also start looking for a resident living situation -- assisted living/nursing home that you keep in your hip pocket. It may be that your mother's condition deteriorates overnight, like my mother's did, and you will not have to scramble to find a care facility that you are comfortable with. In the end, my mother is in the best-possible place -- with folks whose job it is to care for her. She goes in and out of understanding her situation...but it's better now than it has been in two that's a relief for me. Aging with dementia is the worst, but if you can do some proactive next-step measures, you may feel that you have some control, and unfortunately that's the best you can hope for. My best to you!
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Judysai422 Dec 5, 2019
This is the very best advice, Jpabytia. Please follow it. As your mom gets worse, it will be impossible for you to be the sole caregiver. You deserve to live your life how you choose.
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