LIVING WITH DEMENTIA EP 14 | IT'S GETTING ROUGH AND ONE ON ONE CAREGIVER TALK

at the end I'm gonna do a special one-on-one like talk with other caregivers so if you want to stay tuned for that but I thought right now we would let Jason kind of update and talk a little bit about um just kind of how you're really feeling about everything and what's been bugging you and not bugging you and that kind of thing do you want um guidance okay tell me what's bugging you the most lately I feel like I have really gone downhill in the last little bit just everything is shorter fuse tired give it can you give an example um fireplace so in the new room we put in the fireplace in and in the fireplace was a gas log set that didn't work so it needs to go back to the store um it literally has a gas connection and a couple of screws it's so it's fairly simple it was all I could do and I needed a nap to take it out and you just you described to me when you were doing it that you felt like your brain was just going and it was just like you were sweating and you just needed a nap what else has been going on with you that's been bugging you a lot lately I don't know I was really not in the mood to do this so if that's bugging me I don't want to do this I just don't want to do this I don't feel like being asked questions I don't feel like someone do it we don't have to do anything you don't want to do always I don't feel like being chipper and you know you don't have to be chipper well then what am I supposed to do here because all you're doing is asking me questions and I don't feel like being I don't know I'm just asking you questions to give everybody an update on your condition but I think you I think you pretty much are telling it how it is which is things are getting worse and it sucks and I don't like it it's frustrating there you go okay that's all you have to say oh you're breaking my heart okay well that did not go how I thought it would go because he was in the mood to film so I guess he wasn't um this next part that you're about to see I'm gonna look the same I'm in the same spot but I was actually filmed before I attempted to film with Jason but we have to respect him and his wishes and uh he's if he doesn't want to do it but obviously his wishes come first so watch this next part for those that are caregivers and I'll keep you guys updated okay so I thought it'd be kind of nice to put here at the end of the video this little one-on-one talk for others who are going through the same situation so this is for me to other caregivers those who have this situation in their life those who take care of those 24 7 or maybe they have a parent or a loved one that they help out with and so for the rest of you you can definitely watch but keep in mind that you might not be able to relate to what I'm gonna say and you might have thoughts or judgments um that aren't appropriate since you're not in the situation and are not dealing with someone who has dementia 24 7. so I am filming this before Jason is filming his part he's taking a nap and uh we're gonna film when he gets up so that way he'll be nice and rested and for those of you who like to Stage things um Jason is like stage four five and there are seven stages in dementia and everyone's different and some people have different forms of dementia and so they all have different characteristics and so no everyone isn't the same I am learning through my support group that they're yeah they're not all the same but there are a lot of similarities and I remember reading other people's things in my support group thinking whoo glad I'm not going through that and then now I'm going through that and it's like it's so it's really nice to kind of unfortunately see where you're going but have that as a guide and other people who went through it it's just been really nice so definitely recommend if you don't have a support group that you you get one you need one in this journey um I want to say that our hardest issue right now is silly as the sounds and I know a lot of people don't think about this is Trust so I used to trust Jason explicitly and never really thought much about anything that he was doing or saying or whatever and now trust is like really difficult I have to monitor him and it just feels so motherly and controlling and so it's just such a different role that you have to take on when someone that you're you know taking care of has this especially as your spouse and so I have to I I'll just start as an example of things that we've personally been having a lot of difficulty with so I have an app on my phone that alerts me of transactions that are over a certain limit and when all of a sudden my phone tells me that I a large transaction has happened on your bank account I no longer think oh my goodness someone's hacked my you know my bank I think oh my goodness what is Jason doing and it my stomach will just think and honestly I'll get choked up thinking about it because money is such a stressful money is such a stressful situation in normal everyday lives and so when you add that in and combine that in with uh people who have dementia it's really difficult so and I try and um see it from his point of view and I'm struggling on that aspect because Jason is at the point where he has lost his like reasoning skills like his um logic and so very very illogical thinking and I can no longer just sit and talk to him one-on-one like man we were I mean we are best friends but we were like in this life together and when we were back and we were like you know two income family and working and doing our thing and everything if I came to Jason and I said hey this month this was a perfect example November and December are always like rough months because like our car tags our property taxes are due and then Christmas and I'd be like okay we're gonna have this many expenses so we have to be really tight on the budget boom Jason would have been my teammate he would have been right there with me and I say that to him now and it just goes in one ear and out the other and he doesn't really remember it or think about it and they get very fixated on their own items and their own things that they want and then they can't think about anything else or the repercussions or how it's affecting other people and I know that many of you are going through that and I'm just my heart is with you I know how difficult it is I know that spending money is a very difficult thing and taking over taking that away from them that Financial Freedom is really difficult I think a lot of people their biggest struggle is when their loved one is no longer allowed to drive that was like a big fight for them and everything that was not our big thing our big thing is is like making sure that I keep Jason and I safe in uh to where everything is okay financially to where we can continue to live um just a great life and have a roof over our heads and everything like that and so that's like my number one priority and so that gets really difficult when that partner can't grasp that concept anymore and they get angry at you and um something that's new for us is I can't think of any other word than temper tantrums and that is something that we are dealing with I am dealing with um a lot right now I've had a couple like where people leave mean comments and they'll say you're acting like his mother well I'm sorry but he acts like a child sometimes so that comes out because I am a mother and when someone's throwing fits and temper tantrums my dog is scratching at the door she wants in here and just all of that it's really difficult because I have to I no longer had just the role of wife with him anymore and learning how to deal with those situations when a grown man is just throwing a fit over something that I can see is so so you know small but so big to him and just learning to adapt that I look back on the very first video that we put out a couple years ago where we were starting this journey and I want to laugh not laugh but I look back and think oh you guys hold on you are about to go on a wild ride I used to be like more in denial about it and now it you don't really you you can't you don't get a chance to be in denial you it's just in your face constantly and it breaks my heart for Him it breaks my heart for us as a couple because it certainly hasn't strengthened our marriage it's changed the entire just aspect of it and I my heart goes out to all of you that are going through this also so I guess I just like to give the backside view of how everything is this is actually going to be the end of the video his part will be before but thank you to the others that and and those that aren't going through it but that support our Channel and all the love and support it's really nice to not go through this alone because this is one of the weirdest diseases and it's I don't know how it's really hard to go through it with like Grace and dignity and you're just kind of like okay let's just I'm just going along for the ride but thank you guys so much

Channel: LIVING WITH DEMENTIA

Views: 65,752

Keywords: living with dementia, dementia, memory loss, lewy body, alzheimers, brain injury, TBI, neurodegenerative, neurodegenerative disease, early onset, neurologist, cognitive, proteins, young, young onset, alzheimers disease, brain injury documentary, brain injury stories, dementia caregiver, dementia documentary, dementia patient, dementia with lewy bodies, early onset dementia, early onset dementia symptoms, early onset dementia stories, a charming abode living with lewy body dementia

Id: hPAYKOtic94

Length: 11min 37sec (697 seconds)

Published: Fri Jun 16 2023