I recently became a caregiver to someone with dementia. Is it OK to set boundaries with her or is that an impossible task?

The one boundary I set was Moms transportation to Daycare. The first day we took her in my car. The Staff took her off to meet the other people. My DH stood there telling her everything would be OK while I an walking out the door. It was like he was leaving one of his kids. She came home by bus the DC provides. She informed me that she was not taking that bus again. I told her that the DC provides the bus and she will use it because I am not taking and picking her up every day. I am not a morning person. Getting her up and ready was exhausting enough without me having to get ready too. The time it would have taken me would have eaten into the time I had without her. They came at 8am and brought her back at 2:30 pm. Don't think she ever did like the bus but she got a crush on the driver, so she went. He was a really nice guy.

TN, very well said.

TNtechie, thanks for such a heartfelt and thoughtful comment about boundaries. I think a lot of people have trouble setting boundaries, especially when it comes to a parent; our own needs as caregivers end up taking a far second place to their needs. Sometimes I tell myself that I am "selfish" when I start to resent my MIL who lives with us. After all, they are ill, are near end of life, or maybe plain feeble. You sound wonderful and the unconditional love for your parents shines through. I love how you define problems, it gives insight on what's really important and calls our attention to what matters such as their safety. It's not healthy as caregivers to let every aspect of our loved one's behavior drive us batty. I am beginning to realize that there's so much you can't control as a caregiver, but yet how I decide to handle or think about the behavior can make my own life either 10 times easier or harder. This was so spot on!

Initially I think we get so upset because we are profoundly shocked by the dementia behaviors from someone we love and/or respect. We have no experience in how to handle these behaviors so it's very unsettling. Trying to discuss these behaviors only further how reveals the dementia has destroyed the person we once knew. I know I have walked away and cried buckets of tears. We are angry this dementia has happened and often we direct that anger back on the person with dementia, expressing our frustration about their behaviors. Remember anger is a stage of grief and we are grieving for the person we did know and will never really know again. We may see brief reappearances but often that only reinforces the our sense of loss.

I found it useful to separate the dementia behaviors from the person. The person doesn't deserve my anger over behaviors he/she cannot control. Once I accepted, emotionally as well as intellectually, that the behavior was dementia and not really my parent, coping was so much easier. It does still get to me and I don't think that ever goes away completely, coping does become easier.

Mom was my vascular dementia father's primary caregiver for over a decade and she never completely separated Dad's dementia behaviors from her husband. They would both get so angry and they would have some awful arguments. One or the other (and sometimes both) would call me to "come talk some sense" into the other!

My mother doesn't have dementia but she does have short term memory problems. After Mom moved in with me I discovered I was so much more like my "a place for everything and everything in its place" grandmother than I ever thought I was. Mom is a depression era child and oldest daughter. She wants to "do her part" and that means loading and unloading the dishwasher, washing dishes, folding and putting away laundry, sweeping, dusting, etc. Sometimes I need to search for a particular cooking implement, clothing article, book, etc. I cannot ask Mom where she put them because she doesn't remember.

My coping mechanism is dividing problems into "my problem", "Mom's problem", and "not really a problem". The irritation I feel when I cannot immediately find the shoes I left tucked under my lingerie chest is "my problem"; my pots not being stacked "correctly" in the right cabinet is not really a problem at all. Mom not taking her medicine correctly because she doesn't remember the day of the week is "Mom's problem" for me to solve with a small calendar in her bedroom over the medicine box. Over time I have found "my problems" are not nearly as irritating as they once were, many of them no longer bother me at all. I spend my energy on the "real problems" of keeping Mom safe and feeling secure in our home.

You cannot really set boundaries on most things with a dementia person. I ignore small verbal abuse comments and walk away when things get nasty. I think that's about all you can do in the setting boundaries on the dementia patient.

But there is another set of boundaries you need to set - the boundaries on yourself.
How much of your life and your energy are you capable and willing to devote to caring for someone else. Those choices and those boundaries are in your control if you want them to be. Be honest with yourself. Don't let guilt and what someone else will think be the drivers in setting your boundaries. I have chosen to care for my mother in my home as long as we can possibility make that work. I could not do that alone over the long term. I chose to leave the workforce while I got my parents settled (Dad in MC and Mom with me) and moved closer to extended family so I would have easier access to some help and support. Leaving my "dream home" wasn't easy but it was right choice for us. Last week when Mom hadn't left her room by 9:00a, didn't answer the door when her great-grandchild was knocking, and didn't answer her phone when I called from work, it was a great comfort to call a granddaughter and hear she had observed Mom looking out the window and would check on her. It was a rainy day and Mom had decided to stay in bed reading that morning - she didn't hear the little boy at the door or the phone ringing from another room. If the time ever comes when Mom needs continuous skilled nursing care then I will place her in a local facility and monitor her care. Mom living with me now is saving some of my parent's money that might have been spent on AL; hopefully there will be some funds left when my dad no longer needs MC/SNC to at least initially pay for Mom's care too when its needed.

I have defined my boundaries - I will not compromise my own health or my ability to adequately care for myself financially. I have taken a job with fewer responsibilities, less stress and less pay about 5 years sooner than I planned for my own sake in order to care of my parents. My boundaries were defined by ME based my capabilities and resources and what parts of my life I was willing to compromise. You need to do the same.

Hi Cynjsteve, you didn't mention if she lives with you or what your relationship is or even how old she is. Is this her home or yours? Anyone that age is extremely set in their ways; we all are too :). Plus with dementia, they can be particularly stubborn. It does sound like that she wants to be helpful. My MIL who moved to our home early on would empty a dishwasher full of dirty dishes back into the cupboard (she has macular degeneration on top of dementia). When she has her spoon sitting in a coffee cup for the better part of the morning, I have observed her putting it directly in a jar of peanut butter without so much as rinsing it. She does not tend to cover her mouth when coughing, so once she coughed on an entire new package of Mallomar cookies that I had just opened. I have to admit that I am pretty meticulous and somewhat of a germaphobe. I try to thank MIL for any little helpful action, I think they need to feel that they are contributing in some way and appreciated. It's normal to feel frustrated particularly if it's your home and you have your own set ways of doing things. I think changing up the cloths or keeping the dishes out-of-sight, or using colors to designate "the blue cloth is for washing the floor" might help. I actually separate out food in my fridge -she has her lunch portion and she can put any spoon clean or used a zillion times in it. Then I have mine in the back of the fridge. I think the boundaries come from you creating them for yourself, so that you are more comfortable. And being creative about it. Imposing boundaries on this person will likely not work. One example of this, MIL doesn't realize that I am on the phone and will approach me with endless questions about something trivial. Now I have learned the best way to create a boundary is to literally lock the door to my room so I can have my phone conversation. Good luck - it's challenging and can be frustrating because these encounters hit smack against your own values such as how you feel about cleanliness or privacy.

I think it's important to distinguish between those routines and habits that have got her this far, even if they do make you feel light-headed, and those which have gone steeply downhill because dementia is making her lose the plot.

So if she's the sort of person who has always thought you should change your kitchen dishcloth once a month whether you need to or not (head swim)... you're entitled to be revolted - and not to eat there! - but it's a habit that's always worked for her. Tread carefully. And who's to say it hasn't made her the woman she is today?

I wouldn't call washing the dishes with a scrub rag petty (eww), especially if you are expected to eat off those dishes! How you deal with this is going to depend on your mother's living situation (although I'm going to suggest that if she is still living independently it is most likely not safe for her any more), perhaps you could gather up her dish cloths and hand her a clean one each time she does the dishes.

Sometimes you have to be sneaky. Get some washcloths that look like the ones she favors, and substitute them when she's not looking. She might not (hopefully) won't know the difference between two cloths of similar design and color.

Honestly, though, I wouldn't eat anything on dishes washed w/o soap and hot water, or with the same cloth used to clean floors. Lack of hot water alone could fail to remove contaminants. I'd also be concerned about oral infections from bacteria on food.

I'd bring my own paper plates if I had to eat there, or pack your own food in containers that you take home and wash.

On the other hand, she seems spry enough to clean floors, so that's a positive in that she still has an apparent good level of mobility. And it reflects that she still recognizes that some things need to be clean. Could you creatively channel the cleanliness concept to something else? Dusting shelves, bookcases, and folding laundry as Ahmijoy suggests?

I do think you're right in establishing boundaries though, but they might be more of the nature of your refusal (i.e., to eat off unclean plates).

Caregiving for anyone in any stage of dementia is a challenge. We find impatience and yes, sometimes even nastiness inside us that we never knew was there. It’s depressing and disheartening to realize we’ve become like that. We’re easily annoyed, impatient and short with the person we’re caring for. My husband doesn’t have dementia but I understand how you feel. Days out don’t help even though others here tell us to “take care of ourselves”. Because we always wind up back in the same place doing the same thing for the same person.

You might feel better for a minute if you tell her (your mom?) “Stop doing that!” But it won’t help. She may get upset and even start crying and then you feel like a crumb. My mom with dementia was a cryer. Let her putter around with the dishes and then just rewash them. For the floor, get her a bucket and rags that’s just hers. Find safe, simple activities she can do, like folding laundry or sweeping.

I guess it’s just petty little things that bother and frustrate me. Like washing the dishes with a dirty wash cloth instead of with soap and water. She won’t listen and gets irate when I try to do them. And she insists on cleaning the wood floors on her hands and knees with the same cloth that she does the dishes with. I guess boundaries wasn’t the right word to use. It’s just the little things that get on my nerves and I don’t understand why I get so upset.

yes im curios also what boundaries you're hoping for?
depending how bad the persons memory is will determine whether you have any chance with boundaries.

It is "OK" to set boundaries, but enforcing them may be a lost cause. It is best to make self-enforcing boundaries. Just telling her to stay out of the cupboard where her pills are probably wouldn't be very effective, but putting a lock on that cupboard probably would be.

If she is repeating the same question over and over, no boundaries are going to solve that. She doesn't even realize she is doing it.

If she is being verbally very disrespectful you don't have to sit and listen to it. "I see that you are upset. I'll come back later." Leave the room. Leaving the room is for your benefit. Don't expect it to teach her anything or to impact future behavior. Though love simply does not apply where there is dementia.

Cynjsteve, it depends at what stage of dementia. If early enough, then boundaries can be set. If the person is deeper into dementia then it would be like trying to set boundaries with a 2 year old.


Just curious, what are the boundaries that need to be put into place?