KatysMom Posted December 26, 2017

My first post here...I guess I'm just venting.


I am the caregiver for my cousin. This was an unexpected turn of events after having moved in with her ten years ago after my divorce. I had been diagnosed with congestive heart failure and a list of other heart-related ailments and I was hesitant to live alone. When we discussed me moving in with her, she shared her home was in need of help and she was overwhelmed by it. Still feeling the pinch of a divorce I didn't see coming, I jumped at this opportunity...my need to be needed was a strong factor. She wasn't kidding. The house I'd never seen before was in deplorable condition with a fair amount of hoarding going on. I fancied myself as the solver of all her problems and invested most of my available cash into home improvement...thus creating my own trap. I thought I knew my cousin, her personality traits and what made her tick, but I was so wrong. Even before dementia, I discovered she was head-strong and single-minded and very used to doing things her way, having never married. Fast forward ten years and we are dealing with her dementia. As you might expect she asks the same questions repetitively but when I provide her with an answer, she argues with me that I'm wrong. I find I have to justify every answer, providing proof to support what I'm saying. Finally, I convince her and then ten minutes later we're having the same argument. The hoarding has gotten worse, much worse; though it's mostly confined to her areas of the house. It still bothers me, though. There's no way I can invite someone here socially. Her driving is terrible, but she refuses to give it up. She doesn't think she has a problem. She's had three minor accidents when I haven't been with her, so I try not to let her drive alone...but I'm scared to death to be in the car with her. So many people describe the behavior they deal with as a toddler having a temper tantrum. That's exactly what she is like. She seems to wake up in a bad mood and just get progressively more miserable as the day progresses. To make matters worse, I'm too sensitive for my own good. Even though I've heard thousands of times not to take it personally, I often do. I try to get time to myself but that proves difficult. If I go to a friend's house for a visit, she's on the phone numerous times, angry because I'm not there. I have a little craft area in the basement and I truly am happy there...but reality follows me down. She's down the steps often telling me she can't find the milk, can't turn the computer on, etc, etc. Or comes down to read me a newspaper article...any excuse not to be alone upstairs. She can't live alone as she can't manage the simplest of things like using the microwave, the phone, the TV remote, etc. She is also financially dependent on me, we are both on fixed incomes and are not well off financially. So here I am in a trap of my own making. I can't leave her and live with that guilt as I think back to the days when she invited me to move in with her thinking she would be my caregiver. But living with her is taking a real toll on my health...avoid stress my doctors say...little do they know! I don't have that same connection you have with a spouse or a parent...I'm not linked by that kind of love. I don't know if that makes it better or worse, but it feels worse. This is my first post here. I've been lurking for a while now. I haven't even asked a question...I guess I'm just setting the scene and venting.

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Dorianne Dec 30, 2017
Katysmom - I feel in a similar, but not same, boat. In that when I was 15, I left my alcoholic mother to go live with my father. She got sober when I was 17, but I hadn't lived with her since 15. Now I am 49, staying with her and looking after her. I feel like - having never lived with her sober self - I didn't have a clue who she really was! Regret, I have it in droves!

One thing I've had to do is really set some boundaries around space, and accept being the bad guy in enforcing them. If you are paying household expenses, you have the right to make some demands about the physical space. Do you have a lock on your bedroom? Can you put a lock on your craft room? And just not answer it? I know it's hard - feeling like the bad guy is how enforcing boundaries feels, but you it gets less difficult after awhile. Or you could just say you had your headphones on.

Oh, this is something....I dunno if it will help. But I and a lot of my female friends will wear headphones in public just to keep strangers - especially guys - from pestering us. Sometimes there's no music playing! (I've done this at work, too, to avoid being pestered by tenants about things I can't do anything about - I just go where I'm told and fix what's broken!)  So you just wait for the tap on the shoulder, answer the question briefly, and immediately put the earpiece back in.  If she is talking to you while you have your headphones on, just ignore her until she actually has to get your attention....like you are listening to music and can't hear her.  She MIGHT get the message eventually!  (You could also listen to music as well, not just have silent headphones.)  I've started doing this with mom too - not just earbuds; I got a nice, big, visible, over-the-head set.  In white. 

I don't know that I have too much real advice at the moment. But the driving....is seriously dangerous, not just to her, but to others on the road. Dementia driving is like drunk driving. One thing you can do is put a stop to it.

When my father's driving started getting really bad, my stepmom and I both spoke to his GP about it. She contacted the Motor Vehicles Department and had his license revoked. He was upset at first, but because he had dementia, he eventually forgot.

KatysMom Dec 27, 2017
There was a delay with my email provider, so I didn't know anyone responded to me until now. Just receiving responses, not to mention some excellent advice, makes me feel better. Thank you. I'll respond to each comment individually so this doesn't become too long. Thanks again to all of you who took the time to reach out to me.

pamzimmrrt Dec 26, 2017
What worked for me with the questions with no winnable answer.. when she asks you something,, respond with "what do you think?" Then just agree. They normally wont argue with themselves And if they do... respond "that's a good point!" And if you spend another cent on the house, make sure you save the receipt! I have started to do that with the river house since it looks like the family is going to sell it out from under hubs... FIL keeps telling me to buy things for it.. Nope!

SnoopyLove Dec 26, 2017
It's true that your cousin very kindly took you in in your time of need, but it sounds as though you have been very generous to her in return. However you decide to proceed, you should by no means somehow feel obligated to be a full-time live-in caregiver to a dementia sufferer. That is just a whole different order of magnitude.

Another thought: as you are both on limited incomes, it would be a great idea to make sure you and she are aware of any and all programs that could help. If you haven't already done so, contact the Area Agency on Aging for your area.

Also, someone who can't operate a TV remote or phone shouldn't be driving. That needs to stop before she kills someone.

meallen Dec 26, 2017
Just wanted to say this sounds very difficult. I, too, started off her venting. I expect a lot of people do. It is, IMO, a helpful way to start.

freqflyer Dec 26, 2017
KatysMom, I can see the best of intention when you and your cousin decided to share her house. And it was nice of you to update the house to make it a better living situation for the both of you.

Then walks in dementia, uninvited. Sadly it isn't your cousin's fault, and living with a person who has dementia can be a real challenge as you already know. Your cousin is probably scared not quite understanding what is happening to her, thus she becomes angry with the world.

Whenever your cousin tells you that you are wrong regarding whatever, just agree with her "yes, you are right, I am wrong". Believe it or not, that can be a win-win for both of you. You know that telling your cousin a "therapeutic fib" will make her feel better, and for you to feel better not having to go through a never ending argument on that subject.
You need to keep telling yourself that your cousin can no longer reason things out.

Scroll down to the bottom of the page to the blue area.... lot of excellent articles to read.

Oh, does your cousin have a Power of Attorney, a Will, a Medical Directive? If not, it might still be possible for her to get these things. If she can afford to pay for such legal documents, get an appointment with an Elder Law Attorney. Set the appt for the time of day that you know that your cousin is more alert, so she can understand the documents.  Ask if it would be wise to add your name to the Deed to the house since you had used funds to help update.

There might be a time when your cousin's dementia needs a higher level of skilled help, and if money is very tight, then Medicaid [which is different from Medicare] would give her a helping hand.

HolidayEnd Dec 26, 2017
Wow, you have a unique story but also very similar to other people’s situations! I am relatively new myself! So I say hello and that this is a helpful site. ;-)

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