Dementia is a beatch

wizardofid

wizardofid

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I'm so Goth, my wrists slit themselves
It's is 4am parent has fallen out of bed again. Pick the parent up place her in the bed sip of water , put the covers back on her, and have to leave the room again for the pleading starts again to do this or do that. My dumbass decided at the start of her deteriorating dementia about two - three months ago to give into her every demand, which has been my own undoing.

She entirely wrecked the room, pulling off covers, books and what not, and banging on the floor to get my attention. Personally if I had the 30K+ to pay for frail care I would have done it ages ago. So I don't need to be told she needs specialized care, or the family needs to help out, with the exception of my brother that has assisted as best he can, the extended family being vocal about her well being ect, you know the whole spiel. Went quiet the moment we asked to help club in to get her a hospital bed even setup a back a buddy fund raiser to try and get her a bed a few days ago, no surprise the extended family went silent.

Basically an emotional and frustrated wreck and if I don't do some thing fast I am going to end up in a mental ward myself.

Sitting here and contemplating my next move. Harsh reality is I need to physically turn off my guilt and emotional meter otherwise I am not going to make it. At some point I need to go back into that room and clean it up. I have moved a lounge chair in there, table chairs and everything to get her comfortable.

She has a wheel chair so I can take her on walks and stuff, I haven't been able to do any work in the past 3 months, as my dumbass decided I need to give in to her every whim and outburst.

I literally packed a bag last night several jackets and some clothes and was physically out the door and was just about to let the family know, someone needs to take care of her, I am done. If you asking, and want to comment it is your parent, they took care of you. Clearly you haven't dealt with someone that has had dementia, it ain't pretty. But yeah my dumb ass walked back into the house sat with her for a few minutes and went to bed.

As selfish as it sounds now I need to look after myself first, before considering her welfare. I made the mistake, of fighting and arguing and reasoning with a dementia patient, but lesson learned the hard way. I have to do something now and rip of the band aid and get it over and done with.

I have decided the following.
I have a freestanding building on my property that use to be an old shop I moved in there a while back while she was still able to walk, would sleep there at night and try and work in my office during the day. That was a huge ass failure to say the least.
Once I have made her room safe for her, remove everything but her bed and lounge chair. I will be moving the other building full time.

I am setting up a schedule now, bath time, food time, chatting time, and taking the parent for a walk ect. Also giving the family a piece of my mind tomorrow have them on whatsapp, if they then decide to not talk to me any more that is okay as well.


I do not wish dementia on anyone, you have to become an emotionless psychopath to properly care for a dementia patient, and I am afraid tipping point of becoming one and not in a loving caring way, but in the sadistic make you suffer way and enjoying every moment of it, I am way past the feeling guilty stage and close to causing physical harm stage, and that is fking scary and I have to keep on telling my self, it is okay to ignore them. If I don't I am going to phsyically becomes something much, much worse.
Trust me if you can afford it put your loved one in assisted frail care, if you go at it alone, not only will you be fked for the rest of your life, you will never ever recover........
 
Flip dude. Haven't experienced this ordeal with any of my family members and hoping not to ever have to.

Yeah, the family has to help out. Many will not judge you for the want to cart the parent away - there is a breaking point and you need a break or something needs to change. Strongs.

Also, can't they help with a carer? And it seems as though you will have to show that you mean business. Don't know what that would look like.
 
I'm so sorry you have to go through this. Been through this with two grand parents. It's horrible. And then you get to the point where they don't recognise you anymore, and it's so much worse.

I our case the only thing that helped was for all the siblings to get a turn to have grandma for a month or so at a time. Gives everyone a break at least.
 
Dementia is very real. Good luck with everything.
 
wizardofid said:
get her a hospital bed even setup a back a buddy fund
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Do you have a link to share? Some on here might help. Maybe also ask on the "pass it on thread"?
wizardofid said:
As selfish as it sounds now I need to look after myself first
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This is not selfish, you have to think of yourself. It doesn't help if two people suffer. You need to set personal boundaries
 
Sorry for what you are going through and being put through.

Sadly, that is what most family members do in such a case... they fold arms and leave you to it all by yourself. With the exception of my one sister (she helps out a lot), I know exactly how family is.

I am not in your situation (dementia) but have a parent that is so entitled that I had to rewire my brain. I used to be like you and give in to her demands until I put myself first. She then goes around my siblings and tells them I don't take good care of her. Yes, she stays with me.

I am not going to be blackmailed otherwise it will be the end of me.
 
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Have you tried L-Theanine to help relaxation and improve your sleep quality? (It's a direct precursor to GABA.)

It does not interfere with other meds.

And if you take it with coffee, it boosts concentration, so you could catch up with work.

(Dischem sells a bottle of capsules for under R100.)

You could even give her some of those!
 
I feel you, bud.

It's not easy. I went through it with my late father, and I'm going through it with my mother now as well. For the last five years, putting my personal life on hold, on top of that, she also had a nasty accident that led to multiple surgeries, which has left her partially immobile.

I wish you strength, my friend. I won't tell you how to manage it, as every situation is different. But eventually, we have to make the difficult decisions and put our sanity and well-being first, no matter how much guilt we feel.
I'm busy making arrangements to sort this out before I lose my sanity.

I gave up on the idea of ever receiving help from family or friends. They talk a big game but don't come through when you need them. A bunch of entitled know-it-alls who, quite honestly, don't know anything. So yeah, fudge it. I'll sort out the arrangements myself and to hell with what they suggest I should do.
 
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DapperDanMan said:
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Don't joke lol i have considered that a few times when arranging pillows.

Too many post to reply to.

Will keep it short. Just kept calm this morning, bought coffee in a plastic mug, and the pleading and bargaining started the moment I opened the door. Ironically she just threw the plastic cup as I am writing this lol, before that I put on a clean nappy. You think child nappies is fun, try adult nappies and cleaning up......that sucks the joy out of what little you had left.

Had to stop my self from explaining. Just said I will assist when I am ready, hearing the shouting and moaning in the background. Still have to clean the room and the mess she has left, then I have to move my stuff out. Will also need to invest in some ear plugs as well.

My brother who has helped a lot, doesn't quite understand what I am going through, has only been here for a day or two and she was on best behavior. She also spend a week in hosipital two weeks ago due to malnutrition and dehydration, I didn't know she was feeding the dog her food and pouring out the water she had in a bucket next to her bed, from the small fires she had been starting. So before she came back, no more matches, no more sharp objects, no more stuff to throw around.

Relented yesterday and set up her room so she can do scrapbooking and that is the mess I have to go clean now. She is smart enough not to throw anything at the TV, so I know it is all an act. So yeah just going peachy this morning.

Yeah have to go to my doctor again on monday to get her some more meds to relax. While she was in hospital I asked that the shrink comes sees her, and gave her some meds to treat depression and among other things noticed she has developed schizophrenia. so yeah........ fun times ahead.....

As for family don't know yet what I am going to say.

But funny enough I have caught on to her tricks early enough, The one time I relented and while she was still able to walk she took her zimmer frame to her, turned my back to go work and off she went to the kitchen open a cupboard and promptly dump the content over the floor including a glass bowl that she dropped got stuck in a corners because of the glass and pissed over the kitchen floor.
Now she wants her wheel chair to move around the house at on godly hours, which is why I placed her in the lounge chair, she is welcomed in the wheel anytime I am able to supervise, but quickly changes tune when she knows she can't cause kak.

Redirection is a myth it only works when the person memory isn't fully intact, her memory is pretty good still, redirection doesn't work. Had to go pick her up from the floor again just now, plopped her in a chair, gave blankets and walked away.

Have to spend some time with her now and she needs to eat something then I am off again.

Someone mentioned getting something to help concentrate, in an ideal world perhaps, but with dementia and pending the level the best you get is 5 -10 minutes, they don't focus at all, had to cancel DSTV, setup a computer to stream a movie or two, removed it when she got into the habit of throwing things, it is my property so she won't have issues destroying that in retaliation.

I definitely learning a useless skill now, best I can do is dealing with her depression with meds which I don't have anything left, she is still currently in the bargaining stage, acceptance stage seem like a long ass uphill road, and it may never come, it is pretty hard for someone to accept that someone else is in control of their life, when they, eat, shyte, sleep and drink. Food intake is still shyte and liquid intake is pretty good, and keep at it, fecal compaction is a real problem for immobile people so liquid intake is essential, just pity the food is all liquid-ish meaning the sloppiest and smellest shytes ever.........
 
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Dementia is rough. From my experience with my gran (i was lucky to take turns/shifts with other family members).

We would lie constantly, say anything to make the person not argue
She would forget that she needs to go to the bathroom, and would have constant accidents
She never got violent or unruly, but would constantly do things that made no sense , she would do stuff over and over to the point of exhaustion, obviously you dont tell her that, she would get defensive.

Its honestly so exhausting. It sounds horrible, but her severe dementia only lasted a month or so, she had a few strokes prior, so she did pass away at 82.

Good luck
 
DapperDanMan said:
Luckily you are moving your belongings out.

Hope your buildings insurance is up to date.

Hope your home contents insurance is up to date.
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No matches and hazards like that any more, so all good on that front. Lol. Yeah she would burn toilet paper, melted the bucket next to her bed at one point. I have to do something, their needs to be a separation between my and her life now.
I am about to go chat with her, she has gone all quiet after picking her up from the floor yet again.....you would think 70kgs is easy to pick up.....but she is pretty much a limp dead weight, picking her up without hurting her is a huge mission in it self, doesn't help with all the assistance of bed to wheel chair lifts my one wrist is fked and already had a fked up back, that is why I need the hospital bed even more, to stop intentional falling out of bed to force me to come help her and for my own health.

Picking up a person is a fkcing nightmare without any resistance or assistance from their part.
 
I am not going to give you advice or other BS. My wife and I took care of my father until the ripe old age of 91 (for 30+ years) and despite having 3 sisters and a brother, the responsibility of my father fell on me. Hey, my wife (wonderful human being) and I made some sacrifices and managed to cope.
I wish you all the strength and patience if you decide to continue caring for her.
I think it takes a very special person to look after another frail human being.
Best of luck to you.
 
This is heart-breaking but as mentioned above, it takes a really special person to continue taking care of a parent, especially under the circumstances. Stay strong man. Prayers sent your way.
 
Sad to hear but you can't carry on like this because you'll have a breakdown :confused:

The anger and irrational behavior are all part of dementia so you can't blame your Mom although reading between the lines you believe some of her destructive behavior is intentional.

In my opinion moving out of the main house and ignoring her is not going to help because you'll feel guilty and she'll carry on destroying things or worse still hurt herself.

Sorry but I'm going to be blunt here. If she's a danger to herself and to others she should be put into a home. I imagine a psychologist could get her into a free facility, especially with her history of being malnourished and dehydrated.

Maybe somebody here knows how to go about it because I don't.
 
Take her to a psychiatric unit. How old is the patient ? My advice is to zonk her out completely. Dont waste your time and money with anything OTC, from your description she seems quite severe hence only proper antipsychotics will be of any use. If it seems expensive go via the public health sector, the drugs available in the public health sector are quite good for this thing - however my advice would be see a private psychiatrist and take the diagnosis and treatment plan to the public doctor (ask psychiatrist to down refer you to the state). Make sure you tell the psychiatrist that this is your plan due to funding so he prescribes within the state formulary (they know) so that you don't get any conversion errors
 
maumau said:
Sad to hear but you can't carry on like this because you'll have a breakdown :confused:

The anger and irrational behavior are all part of dementia so you can't blame your Mom although reading between the lines you believe some of her destructive behavior is intentional.

In my opinion moving out of the main house and ignoring her is not going to help because you'll feel guilty and she'll carry on destroying things or worse still hurt herself.

Sorry but I'm going to be blunt here. If she's a danger to herself and to others she should be put into a home. I imagine a psychologist could get her into a free facility, especially with her history of being malnourished and dehydrated.

Maybe somebody here knows how to go about it because I don't.
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Yeah no "free" means state and no costs starts 30K a month for 24/frail care she needs, family already said fk off. This is the back a buddy link I setup, it is friends that have donated so far, have a pretty large extended family and they have all gone quiet so yeah that is that.
www.backabuddy.co.za

Louise's medical Assitance | BackaBuddy

Louise has recently been diagnosed with dementia and is receiving care at home. She also spent time in the hospital due to dehydration and malnutriti...
www.backabuddy.co.za www.backabuddy.co.za

nope I moved everything out of the room so all good, The TV is there which I know she won't touch and if she does, I don't care much don't watch or care for the TV. But trust me, she is all of a sudden much nicer now, now she found out that I am withdrawing completely.

Decided on only moving my office will likely still sleep in the house, but will see how it goes. However there now needs to be separation between us now otherwise I won't cope and I need to do things I enjoy and get my mental health and general health first priority, fk the rest, it is actually what experts in the field recommend.

I refuse to let her suck what little joy I have for however she is going live still, I won't recover, if I don't, expert as is recommend taking a stand and tough love approach.

IT STOPS TODAY PERIOD

It is dementia, I can book for observation but back home in a couple of days, and will only treat the underlining condition, if I had the 30K+ I would have thrown money at the problem in an instant. As I said medication only treats things like depression and anxiety is doesn't prevent the underlining condition nor does it improve it, still going to be stuck with the same outbrusts, pleading, and bargaining. Having someone that is semi there that you can still communicate with is better that stuffing the person eyeballs high with meds and high as a kite.

Underneath it all there is still a person you know and love you don't want to eradicate the small part that is left, till she is completing none verbal and lost that small human part that is still left. So getting her high is also cruel and inhumane.
 
Went on about the same today, gave her lunch and kept on the usual dementia train, till 3pm after which I couldn't keep my eyes opened ask bed or the couch opted for the bed placed her in the bed, placed a mattress underneath the bed walked out the house and had a two hour sleep in the outside building, best two hours of dead silent rest I had in a while.

Came back just now and found her on the mattress, not a word, or shouting nor fighting asked the bed, couch or wheel chair opted for the wheel chair. Went to the office gave her coffee and a rusk, sat quietly and ate it not a peep and busy playing her favorite game.
It has been proven time and again that distance can improve the mood and cooperation of a patient once you realize that they can't out nag, complain or plea there way out of a situation. things change drastically.

But don't think of it as a punishment or neglect, you guys have to understand dementia patients revert to an early version of their self, and most often this can be child like with massive dependencies and abandonment issues. It isn't being mean it is trying to strip away the co dependency she has. So yeah I will be sleeping there again tonight, her environment is rendered safe. I can finally get some much needed rest in over a week.

I am done with the bargaining, pleading now it just the acceptance of that is her behavior not the first time I went to have a nap in the other building nor will it be the last. Will try my best to explain this is how it needs to be from now on so we both can get some much needed rest, her memory is still intact.

However harsh it may seems, it is what I need to recharge for the next day, it isn't tough love on her it is tough love on me to step away and make sure I get time for my self, no point trying to care for her when I am emotionally and physically fked.
Anyone here will tell you that care for a dementia patient you need time away, whether it is 30 minutes or 4 hours you need to get away, and enjoy things and recharge.

She can live for 10 more years or 3 more weeks, i have no regrets nor do I need motivation for my actions, just need the separation at night to be able to function during the day.
 
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