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Hi, I'm a 37-single guy, and my mother (72) has moderate dementia. (My father is 75.)


My parents for the most part live with my middle brother, where I visit and help around on weekends.


A few summer months they choose to spend in their (and my) hometown - a 5-hour drive from where my brother and I live now. I visit them here every other weekend. I take care of them - mom in particular - in all regards. But sometimes, I find myself "losing it", such as raising my voice, due to not being always patient around the clock.


Tonight, after I set the table and food for mom to eat, I began cleaning up. At some point she started to push the crumbs out of the tablecloth onto the floor. I grabbed her wrist at the middle to stop her, while asking her not to do that. I'm sure the grip wasn't strong for her to feel pain. She said nothing, nor was really aware of that, but right away I felt like beating myself up, also because of the fact she's very attached to me.


Where we live - the Balkan Peninsula- the state structures are nonexistent in this regard.


Thanks a lot for your time and input..

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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.
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timothy11 May 20, 2019
There are no such support groups, and, for sure, many families have been facing with such a situation, which they either manage themselves, especially in smaller communities, or hire someone to help, at least during the day, in larger cities. We haven't been able to employ such a person also because of some reservations on the part of my middle brother's wife, when it comes to finding the right assisting woman. My sister and I suggested that an unemployed lady living really close be hired, but my sister-in-law considered her not fit for the job.
On the other hand, my mother would most probably be reluctant to be cooperative with / welcoming of any strangers. She doesn't feel comfortable in the company of people she doesn't know/can't recognize..

Me create such a support group? How? (I work full-time, as do my siblings, and my middle brother's wife - none of us are permitted to work less just because we're in such a situation. I myself have great difficulty taking permission 1 hour earlier from work on Fridays to catch the last bus to my hometown. Apparently, almost nobody cares about anybody nowadays..
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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?
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timothy11 May 20, 2019
Countrymouse. You made a very good point about all of us stepping in to help accordingly, in order to prevent each other's burnout, but the burden falls mostly on my middle brother's wife, and me, when my parents are staying with my middle brother - as I said earlier, I provide help during the weekend, or certain evenings as need arises.

When my parents are alone in the hometown, the burden falls on the father, who is pretty good at preparing food for both. Once a week, usually, they're visited by my sister. My mother can still get dressed pretty easily, once you find the right clothes. She also recognizes us by face, and also remembers our names, with some exceptions -- she can't recollect, for example the names of my nieces and nephews, nor that of my oldest brother's wife..

When mom and dad are in my hometown, I visit them every other weekend, despite the tiring and pretty long distance. I do everything that needs to be done, in order to also give my father a break. I also spend 1-month leave with them, which I mentioned in one of my previous posts.

Things would have been easier if my oldest brother and his wife had provided a helping hand with my mother, especially when my middle brother's wife or me are not around. Anyway, as I said earlier, to them showing up for company from time to time is enough..

Where we live there's no state assistance, nor support groups, nor training opportunities that would relieve the overall situation of people affected by dementia, or that of caregivers. As a consequence, the family has to figure it out and cope with it all by themselves.
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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?
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timothy11 May 20, 2019
Countrymouse..Thanks a lot for the input. Regarding your question, we don't have a long-term solution to the issue. It seems that my middle brother's wife, father - when they're alone in the hometown - and me will have to cope with the situation. My oldest married brother, and his wife have provided practically zero help. They live two floors above my middle brother, but they don't really care to help concretely - except for empty words..(This is the reason I didn't mention them earlier.)
When it comes to my sister in my hometown, the maximum she can offer is one day ( or a few hours) at my parents' place to clean the house, and/or shower the mother, or sometimes just provide them with company, which is also necessary..
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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.
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timothy11 May 19, 2019
Daughter1954. Thanks a lot for your comment - each and every works makes so much sense.

I'm amazed how everybody here has offered highly helpful advice without being judgmental.

Putting mom in a nursing home is out of question culturally speaking, even though it may be the best solution for all. To my parents, "getting rid of" a family member in this way is like killing him/her..
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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?
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timothy11 May 19, 2019
ArtistDaughter.. Thanks a lot for the thoughtful comment. Well, it's that and each case I lose my patience when I feel overwhelmed/impatient. This aches my heart then because mom really tries to be active and independent in her own way. All this adds up to the guilt as a caregiver.

We're lost about a permanent solution..A nursing home is no option. Financially speaking, we would afford it, but the issue is moral and cultural - we come from a very traditional society..
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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.
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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.
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timothy11 May 19, 2019
Yes, we're all burned out, including my father, who also has to prepare the food for her, when none of us is around..
My brother's wife is really burned out - my sister less so because she usually visits my parents once a week only, whereas my sister-in- law should take care of mom on a daily basis, when my parents are there..

In my hometown they live in the countryside, where it's practically impossible to hire a helping hand because of locals' mentality not to be a servant to others though they are in desperate need of money.

Even if we were able to find someone, my mother would most probably be reluctant to cooperate with strangers, as she's always been an extremely shy and asocial person..
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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.
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timothy11 May 19, 2019
That's true - the hose creates a lot of mess. She wouldn't be able to use these wet wipes herself - she's always used water to clean herself..
At my brother's they have a squat toilet, so do my parents (in their home). She can handle squatting very well, but she needs someone to clean her (and the area) properly. Almost whenever I am there to do that for her, she's not cooperative enough, generally speaking. She can hardly follow any instructions properly, apparently.
When it comes to using a sitting toilet - when at my place- she has greater difficulty, in not being used at all to it..
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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?
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timothy11 May 19, 2019
Thanks a lot for the considerate thoughts..
I forgot to mention earlier that I have a married sister who doesn't live far from my parents, when they're in my hometown. She usually comes once a week to clean the house and shower the mother. Every other weekend and during my 1-month leave I stay with them , being the only carer. During wintertime they stay now with my middle brother, where I go each weekend to help around - with my mother and other housework.. He's married and my sister-in-law has provided extreme care for my mother. I'm tremendously appreciative of what she has done about mom. She's also burned out because she works shifts and has two little kids ( 5 and 3)..
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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.
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timothy11 May 19, 2019
Thanks a lot for the valued feedback. Yes, I need much more patience with two things: first, with mom's not being able to use the bathroom properly, on the one hand, and, on the other hand, her not being cooperative when I try to help. Second, she is reluctant to go to sleep at night, although she hasn't taken a nap during the day.
Even though she cannot use the bathroom properly, should I let her do whatever she wants to, with me not intervening at all? She uses an attached hose with water to wash herself after defecating/urinating. But she's not able to utilize it well enough...
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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.
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timothy11 May 18, 2019
Thanks a lot for your thoughtful reply. You're right about also taking time for myself. This, though, is harder when they're staying in my hometown, in the countryside, where I have to cover everything myself, except for some assistance, here and there, from my father..Most difficult it is in the evening, when my mother gets more restless. Maybe because she doesn't take a nap during the day? She refuses to do that when asked. Anyway, thank God, she sleeps well, generally speaking.
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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?
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timothy11 May 18, 2019
Thanks a lot for your considerate response. Sorry to hear about your husband. Yes, I take some time off for myself, too - when they stay in my hometown, I visit them every other weekend.
The irritation is not increasing but, the feeling of despair on my/our part is in being aware that I am losing mom little by little.
The state doesn't help in any way, and getting in-home aide is practically impossible here in the countryside, due to mentality and cultural reasons.

On a separate note, should I leave her do whatever she wants to? I mean, especially when it comes to the bathroom. She is still aware when she needs to urinate/defecate, but cannot do that well enough, when it also comes to cleaning herself and the area properly etc..When I provide help, she sometimes is reluctant to do otherwise.
Also, she sometimes complains that her hands are irritated, due to her trying to wash the dishes, or using water, for no reason. But, it is apparent to us now that she likes to do only what she wants to herself..
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