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..
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?
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..
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.
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...
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?
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)..
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.
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..
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.
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..
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..
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.
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..
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?
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..
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?
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.
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.
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..