Caregivers’ chat

[caseydog]

For the past couple of years, my Mother is stuck on everything having happened "10 years ago, you know we still lived in Hawaii."

Mom, we left Hawaii in 2007.
Both DH & I can see her cognitive abilities waning, greatly. But she passed her annual Medicare check up and DH said that's where they asking you a battery of questions that are suppose to indicate any issues.

Person, woman, man, camera, TV?

CD

 

[rascal]

I feel so sorry for you guys going through this $hit. We experienced it with a close friend start to finish over 8 years. Worst thing ever.
I didn't realise Craig was so bad.
Remember to look after yourself first!!!

Words cant say enough.

Russ

 

[kaneohegirlinaz]

My Mom does say alot of "I don't remember" lately and also has a difficult time trying to use her words.
What I mean is she'll start to talk about something in regards to a conversation that we're having and she struggles with it and she knows it.
I think she's very frustrated by that and in turn doesn't want to be around people... she doesn't really want to have to talk. With me it's tons of "you know" or "ummm ..." Oh and slurring ... what's that about? A stroke no one caught?

 

[caseydog]

My Mom does say alot of "I don't remember" lately and also has a difficult time trying to use her words.
What I mean is she'll start to talk about something in regards to a conversation that we're having and she struggles with it and she knows it.
I think she's very frustrated by that and in turn doesn't want to be around people... she doesn't really want to have to talk. With me it's tons of "you know" or "ummm ..." Oh and slurring ... what's that about? A stroke no one caught?

It may not be a stroke or anything dramatic. My dad "freezes up" from time to time. He knows what he wants to tell me, but the words just don't come out. In time, he finds the words, and finishes what he was saying. I just wait.

CD

 

[kaneohegirlinaz]

It may not be a stroke or anything dramatic. My dad "freezes up" from time to time. He knows what he wants to tell me, but the words just don't come out. In time, he finds the words, and finishes what he was saying. I just wait.

CD

Nope, Mom can't do it. And I know it frustrates her

 

[medtran49]

Craig isn't on the forum very often anymore. I've wondered about that. People come away from traumas changed. It sounds like the two of you are still managing to enjoys life and have some fun, in spite of the changes. Keep cooking, and eating well. I hope Craig is still cooking outdoors on a regular basis. Seems like something he really enjoys.

CD

We don't cook anywhere near as much and very, very rarely anything complicated. I'm just too tired and don't want to cook after working all day, and then there are always other things to do on weekends, though I do try and cook things on weekends that can be reheated or easily finished on weeknights. Our eating out expenses have skyrocketed.

He very rarely cooks on the grill and has not BBQd since before his incident in October 2020. Honestly, he would be happy if he could sit in his chair and watch TV most of the time. He did get a sack of crawfish and did a boil a few weeks ago, but that was after he had been talking about doing it ever since season opened. But, then, he did use the hose to wash out the cooler he kept and purged them in, as well as his boil pot and lid, turned them over to drain and dry, and then they sat there. I started with gentle nudges a few days later to get him to put them away, with gradually escalating nudges and pushes, until last Sunday I told him I was going to put everything, including his gas cooker and propane tanks, out for bulk garbage pick up this past week. After throwing a fit, he finally did put them away. That has become his pattern of behavior. So, it's just easier and more peaceful for me not to ask him to do anything.

He just gets frustrated too easily with pretty much everything. When he does get on the computer at work, it takes him forever to do anything, and he either has to be watched to make sure he does it right, or I have to go back and check it. Most of the time it's right, but often enough wrong that a recheck has to be done. And when he starts to get frustrated, things escalate to the point where he can't even remember where the back arrow is on the screen. Heck, there are times when he will get confused with the TV remotes.

He is happy watching TV and going out for nice dinners once a week and getting takeout up to several times a week, even eating frozen meals, which is a HUGE change in him. I watch TV with him if it's something I want to watch or read, and now I'm working on my miniature project, which is something I've always enjoyed. So I guess we're pretty content overall.

 

[TastyReuben]

I started with gentle nudges a few days later to get him to put them away, with gradually escalating nudges and pushes, until last Sunday I told him I was going to put everything, including his gas cooker and propane tanks, out for bulk garbage pick up this past week.

That’s similar to MrsT, and it does make for some tense times.

One thing I have an extremely low threshold for is being nagged about something. As such, I’m also very self-aware about being a nag. The last thing I want to do is harass her into doing something, because having her do that to me gets my back up in no time.

However, because of her stroke, she really doesn’t much mark the passage of time during the day, and she can do something and not really notice that a couple of hours or more have slipped by. That’s why, if she has an appointment, I always figure out when she has to leave, then I tell her in the morning, then I start reminding her about an hour before we have to go. Otherwise, it would come time to go, and she wouldn’t be dressed or have eaten or anything.

Because of that, it’s made me into a low-level nag, especially around household chores. She insists on emptying the dishwasher (I wish she’d insist on loading it, frankly, because I find at least one thing put up in a new and unusual place every load), and that takes her all day to get to, even with prompting, and eventually, there’ll be something in the dishwasher I need, so I’ll get it, she’ll hear me, then throw a fit about me having to have everything done “right now,” until I point out the thing’s been finished since just after breakfast, and I’m trying to make supper with half my stuff in the dishwasher and the sink full of dirty dishes.

 

[Morning Glory]

Because of that, it’s made me into a low-level nag,

That strikes a chord in me. Except, I fear I'm turning into a high level nag... its to do with keeping him to a routine. He has meals at certain times, beers at certain times but increasingly he is drinking too fast and eating too fast. So I'm continually nagging him to slow down. Otherwise he drinks his beer allocation which should last 2 hours in 20 minutes flat and then wants to know when the next drink/meal is. Then if nothing is forthcoming, he tries to go to bed.

He goes to bed at 6.30pm and sleeps (well I assume he does as he doesn't appear or disturb me) until 6 am. So, I can't let him go to bed in the daytime as well or everything will become chaotic and he will be up in the middle of the night. It is that I dread. I need my sleep to cope and if he started to get up in the night I'd have to get up too. So far that hasn't happened...

 

[karadekoolaid]

He goes to bed at 6.30pm and sleeps (well I assume he does as he doesn't appear or disturb me) until 6 am. So, I can't let him go to bed in the daytime as well or everything will become chaotic and he will be up in the middle of the night. It is that I dread. I need my sleep to cope and if he started to get up in the night I'd have to get up too. So far that hasn't happened...

Unfortunately, that will happen. it happened with my dad, but my mum refused to give him his medication because she doesn´t like "pills".
She was the one who suffered because it was 3am, the old boy singing "roll out the barrel" and banging on the door...

 

[TastyReuben]

I need my sleep to cope and if he started to get up in the night I'd have to get up too. So far that hasn't happened...

That was the turning point with my MIL and her daughter (where she lived until she went into care).

She was a real handful during the day, but always slept at night until she gradually slipped into that “sundowning” phase, where her internal clock got all wonky, and she was up all hours, wandering around the house, turning on the cooktop to make something at 3AM and wandering off, empty pot on the burner, or just coming into their bedroom and standing at the end of the bed, just staring at them quietly, waiting for them to get up.

The last straw was when she went for a walk in the neighborhood in the middle of the night and they had to go find her. Four of them living in the house along with her, and they were looking at shifts to mind her, when they realized they just couldn’t live like that any longer.

 

[medtran49]

Unfortunately, that will happen. it happened with my dad, but my mum refused to give him his medication because she doesn´t like "pills".
She was the one who suffered because it was 3am, the old boy singing "roll out the barrel" and banging on the door...

My aunt's father-in-law had dementia and his wife woke up in the middle of a freezing winter night with him gone. He was found walking around outside naked. He had to have 24/7 caretakers.

 

[kaneohegirlinaz]

I'm grateful that this thread was started. I think there's alot of us here at CB that can benefit from all of us sharing these life experiences.
It's a B getting old ain't it?!

 

[kaneohegirlinaz]

Almost everyday DH will ask me, "Do you think we did the right thing by not having your Mom stay here with us?"
YES!
Mom needed to be in her own space, with folks she has more in common with; anything she needs, they take care of it, she's fed, taken to her appointments, shopping, outings, activities, the list goes on.

I recently shared with DH that I had been starting to get angry with Mom and I was afraid that I was showing it. I didn't want to be one of those adult children that abused their elders, not that I would but you know where I'm going with this. You'll see some folks talking to their elder in the most atrocious manner, in public! I just cringe thinking about that. I did an awful lot of eye rolling behind her back, in public, and I'm truly ashamed of myself for behaving in such a disrespectful manner.

I had never shared that with anyone until then and ya know, he agreed with me. He said that he found himself getting angry with her as well.
Isn't funny that we had the same feelings but never showed it nor discussed it.

 

[rascal]

My bestie mum had it and was put in a home supposedly secure? Then she disappeared for a few hours. We all joined the search for her. Luckily she was found. Lasted about another 12 months then passed.

Russ

 

[Windigo]

My MIL had a stroke about 5 months ago, she's had psychosis twice since and she hasn't really come back to her regular self. She always used to have a vivid imagination (she's a journalist/professional writer) but now she doesn't know at all what is true or not. She'll tell things she heard on the radio like it happened to her, and doesn't know fact from fiction. She gets scared from things she hears but does not understand.

She's been tested for dementia and that's not yet the case, but she's clearly mentally declining. She's also partially deaf since the stroke, which makes communication a lot harder. And she doesn't know who's who anymore, she confuses me with my husband's ex wife, my two stepsons with each other and my husband with his brother. When it is pointed out to her, that in fact this is so and so, she gets scared because she's afraid to get dementia and then vehemently denies that the person is actually so and so and sticks with her own story.

What doesn't help is that she has severe arthritis and refuses to get pain meds, because she fears addiction more than the pain but the pain is disabeling her and she only sleeps two or three hours a night on top of everything else. It's so sad to see her like this, she used to be a very active and bright woman. We're just hoping she'll not get another one.

We visit her at least once every two weeks, if possible more often to help with things she needs done. She also gets professional help daily.

We also used to be my oldest stepson's caregivers, but he's moved into a care home for mentally ill young people now and he gets professional help. He has a court appointed guardian and curator to help him out in daily life. We still have days that we take care of him of our own volition, but it's a lot less pressure. He has autism/low iq/obessive compulsive disorder/incontinence issues and ARFID (avoidant restrictive food intake disorder) and has recently come out as transgendered. So there's a lot going on there, and it's good that it's out of our hands because it was really putting tremendous pressure on the rest of our lives.