Am I a bad caregiver for sometimes "losing it" with my demented mother?

We are all human. We all have limits. I can be very nasty to my bedridden husband at times when I come home from work tired or if it’s a bad fibromyalgia/ arthritis day for me. The fact that you’re writing to us means you have a conscience and perhaps you’re worried your irritation with her may escalate into downright anger.

Not all of us are cut out for this caregiving business no matter how much we love the one we are caring for. It sounds like you spend a lot of your time traveling to their home and caring for them. Do you take any weekend time for yourself? If you should find you are losing it more often than before with her, it may be time to call in an in-home health aide. Talk to your brother about this and see what he says. That doesn’t mean you are abandoning her. I’m not certain what you mean by “state structures “ though. As far as what? Financial aid?

I think it's normal for people who live together to disagree and to have spats, we're only human after all. If you find yourself stuffing away your resentment and then blowing up at petty things you need to find a better way to burn off that anger - exercise is always good, or taking the time to regularly socialize with your peers. I think it also helps when you stop trying to fit someone with dementia into their former mold (matriarch, in your case) and accept their true abilities.

It is terribly frustrating seeing your mom do something that is contrary to her former behavior. It’s further aggravating when it causes everyone extra work. Maybe she was always telling everyone not to make a mess—-and you feel that she has been invaded, her mind abducted—-an imposter has taken her place. This is hard to reconcile, painful and unfair.

The problem is, given her diagnosis, you can neither teach her nor expect her to remember what went wrong. You have to accept her where she is. Try to be overly gentle - her diagnosis alerts you to the fact that she cannot reasonably change. She may be doing her best.

So how do you fix the problem? You can only change your behavior by trying to grow more patient. Don’t obsess on what has already happened.

You don’t want to hurt her (physically or emotionally). She is going through a lot. She has to grapple with a debilitating disease and not really feeling “quite right.”

You are grappling with the tragic reality that things may only get worse — this is making you angry — you want to fight (the disease). You are angry with this imposter living in your Mom’s body, doing things your Mom would never do.

Come to peace with this disease since you have no choice. Consider yourself to be on your Mom’s team fighting the illness together.

Appreciate every moment. Love her now for who she is.

Timothy,
I knew I had come to the end of my (emotional) rope when my mother, (age 94, stage 6 Alzheimer’s), spit her pills across the table and was hitting me with her fists and I slapped the back of her hand. She was a difficult woman without the dementia but was impossible with it. It was at that time I realized I felt backed into a corner and I didn’t want to ever be “physical” with her again. We moved her out of our home and into a memory care facility. I never had a feeling to be physical with her again (even when we brought her ice cream and she spit it at me.)
People are only so resilient and then they snap. I suggest you change your situation somehow so you are no longer the only one doing things for them. Can they move closer to you and your brother?

About the bathroom issue - I would disconnect/disable and/or remove the hose. Maybe you could switch to flushable wipes (do not flush but toss) or a basin. (Go “lower tech” to mitigate the disastrous messes). She is trying to clean up after herself but she has lost the coordination, the muscle memory, and the ability. As this creates an unsanitary condition, you have to make changes. If you can afford to, hire a trained CNA to help relieve you. (You will also learn by watching them).

Her ability to make messes is greater than any human’s ability to keep up. The only thing that can make you feel better is knowing you are not alone.

Even though this is immensely painful, you will even miss —this foreign version of her—- this imposter living in her body —someday.

What your mom is experiencing in the later day hours is called sundowning. Behaviors change, sometimes drastically. Mom will not be able to learn to use a wet wipe instead of the house, she has dementia and cannot learn, nor can she reason or understand a situation as you are describing.

Sister is getting burnt out and rightfully so, as are you and most likely your brother is too. I would think it is time to find an alternative living situation. This may be mom and dad's last five months to make this seasonal relocation. Change is very hard on those with dementia. She needs stability and consistency. Sis's priority has to be caring for her family.

Have the discussion with your sibs, before you all get angry with each other over not sharing care responsibilities equally. Decide on a plan and stick to it. This should include dad, he may be experiencing burn out as well but took a vow. Try to get him on board with the plan. He is still relatively young and needs to be able to live his life too.

Thanks for the encouraging words, and I'm sorry to hear that about your mother.. I am afraid my mother wouldn't be able to use a sitting toilet + bidet, as she's never used one..Nor has she used wet wipes herself.

I've witnessed even the staff at the assisted living place lose it with the residents and go take a break. My husband yelled at my mom when she hit the dog for peeing on the floor. The dog was sick. I yelled at my mom a couple of times when she exasperated me to my limit, and I am an extremely patient person. I think the reason my brother doesn't visit is because he can't control his temper, even though he knows Mom can't help what she forgets, says, does. This is all just so hard. Perhaps it was the physical grabbing her wrist that shocked you about yourself? You didn't have words at the moment for what she was doing. You didn't hurt her, so move on with whatever you must do for her. A family meeting to decide what is next for her care as you are all burning out?

First: get used to the crumbs, and whatever she does with getting rid of the crumbs. It's common. It's no different from when a 2-4 year old cannot eat anything, even with the food on a big plate and several napkins, without dumping crumbs all over the floor. There's no rationale for it. But it's a thing. I watched my mother start doing weird things. Like taking crackers out of a box and then just putting them on the placemat on the kitchen table. No bowl. I watched her leave crumbs from Cheez Its all over her apartment; even in the bed. I watched her leave the wrappers from her favorite Werthers candies everywhere. Made me crazy. But, my nephew, when he was 2-4, did the same thing! Nothing you can do about it. Just let her dump what she dumps, and get a dustbuster.

But, more important!

No. You are not a bad caregiver for sometimes losing it.

I'd bet that nobody trained you to be a caregiver. And, I doubt that you ever wanted to be a caregiver. It is not a character flaw or a sin to not be able to handle being a caregiver without getting stressed, angry, impatient and frustrated.

Sometimes, even if you end up feeling guilty, you just have to acknowledge to yourself that you have been given a caregiver role only because you are the child. And, if you lose patience, and know.....really know.....that you cannot change that about yourself......then please find a way to visit less and find someone to handle the "nursing type" functions.

I have been dealing with a similar issue for years. Feeling guilty because I had no patience. Finally, I decided that it was better for me......and, more importantly, for my mother ....... to visit less.....because my patience level was low and as hard as I tried I could not hide that impatience. She doesn't like it when I say I am not coming when she wants me to come, but she is in a good nursing home and I talk with her every day, as does my sister, and the medical staff is good.

Timothy, what you did was a reflex. The fact that you instantly felt horrified by it is GOOD. It shows how aware you are of the potential risk.

One fix would be to substitute a different reflex reaction - it takes a bit of practice but it can be done. For example, put an elastic band round your wrist and snap it. Clasp both hands behind your back and count to ten.

But looking ahead, have you and your brother talked about your parents' future? You two and your father are going to need help with caring for your mother - where's it going to come from?

With four willing adults to do it, the idea of keeping your mother at home isn't as hopeless as it can often seem to be for families! But you do need to look ahead and be realistic about what it's going to involve, and how you're going to handle it.

Your mother will need much higher levels of personal care and assistance with the basic "Activities of Daily Living" - eating and drinking, washing, dressing. She may also develop more severe behavioural problems. The question for all of you will be, day by day, what needs to be done and who's going to do it?

If someone needs to take time off work, would your parents be able to pay them to compensate for lost earnings?

How is your father's health standing up to the strain?

I don't know whereabouts you are, but it might be worth seeing if there are dementia support groups in your area. Possibly even training for caregivers?

Timothy, I do realise that services aren't anything like as widespread as they might be and that attitudes are different, but when you say there aren't any support groups - have you actually checked? We get quite a lot of posters from all around the world, and I've been surprised before now at how much activity is going on where you'd least expect it - we had posters from Burma/Myanmar and Sri Lanka just a few days ago, and although these countries similarly see elder care as very much a family responsibility there is still more support than you might guess.

Whichever country you are in, your family is NEVER going to be the only one faced with the challenge of dementia. So, maybe, if there isn't a local forum or support group for families in this situation - could you start one?!

I guessed privately that the brunt of this is going to be borne by your Sister In Law but didn't want to make assumptions; and besides your father is still young, comparatively, and you and your brother and your sister are at least doing your share. If she is losing out financially, would it be possible to compensate her for her time?

Try not to feel badly about your older brother and his wife, or not until they have actually said "nuts to you lot, we don't care." There is time ahead to develop plans in more detail and to ask them to get involved.