My Mom's sister is not a position to see my Mother's illness or situation, and tells people that my mother is fine. Her daughter gives me cruel, uncaring un-solicited advice via email.
I have stopped opening emails from my cousin. And, I do not talk to my aunt. But hearing my Mom talk to her on the phone negatively about me, just hurts. I typically try to ignore and tune it out but tonight it was particularly bad, and I had to call to give my side of the story, which is CRAZY because with Dementia it's the nature of the beast. My Mom would be in a nursing home if it were not for me moving her to care for her. Tired and frustrated....just a bad day I hope. Tomorrow I plan on getting up early and going out all day (will try a coffee shop, or just walking down town) while my brother comes over to (hopefully) take Mom out.
It might sound crazy, but I have to get up and out early, before she wakes up so I don't get engaged in the drama of Dementia. Any thoughts or tips would be greatly appreciated.
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MyWay is very simple; I explained to everyone that I would gladly take the caregiving role but will not permit caregiving by comittee... Either they trust my decisions blindly or they can do it themselves. It's been five years now and no-one has jumped on a plane to replace me so I think I'm good.
I also implemented the PositivityPlan: Everything and everyone associated with my mother WILL be positive or they will be eliminated from her life until conclusion. No excuses, no second chances, no guilt on my part, no fence mending. It's hard enough keeping a poker-quality smile on my face 24/7/365, much less putting/keeping one on mom's face so emotional vampires get the wooden stake treatment.
For the phone, I initially had the long distance service eliminated. She was frequently dialing the wrong numbers anyway sending the bill sky high. If she wanted to talk to her mouly-mouth sister, we did it on my cell phone's speakerphone where it's a little tough to hide negativity. Now I've had the home phone disconnected altogether... She can't dial anymore anyway (only answer) and the only calls that come in on her line were telemarketers.
Sounds like I'm a control nut, but I'm not. Fact is, caregiving taught me early on that every millisecond is precious and happiness is at a high premium. The only way to make the best of either is demand it and settle for nothing less.
Good luck, I'll float a candle down the river for ya ;)
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Ahead of time, spend a few minutes thinking about how you want to behave. If you’ve had unpleasant experiences in the past, think about why they were unpleasant and what you could do to change the dynamics of the situation.
Don’t drink much alcohol. It can seem festive and fun to fill up your glass, but it’s easy to lose track of how much you’re drinking. Alcohol makes some people feel merry, but it also makes some people feel combative, or self-pitying, or lowers their inhibitions in a destructive way.
Find reasons to be grateful. Be thankful that you get to cook, or that you don’t have to cook. Be thankful that you get to travel, or that you don’t have to travel. Be thankful for your family or your friends.
Find some fun. One of my Secrets of Adulthood is Just because something is fun for someone else doesn’t mean it’s fun for you, and vice versa. If the time with your relatives is meant to be fun, make sure you’re spending at least some time doing something that’s fun for you.
Re: personalities & dementia
Mostly Mom is strong willed and negative, however, when she want's me to help her with something (combing and styling her hair, picking out an outfit to wear, iron something, etc.) she is very nice.
She has bad knees (both are bone on bone) but she refuses to get a knee replacement years ago because she thought that they didn't work. The physical & occupational therapist that came for home visits during the first 2 months of her return home from the hospital advised me to get her a cane, but my mother is to vain and refuses. They are concerned about her balance and fall risk because of her knees. She is in pain a lot but doesn't take any pain medication more than Tylenol. She is very sensitive to RX drugs.
Sometimes.
My husband died 10 weeks ago. The condolence cards nearly all refer to him as a "kind" and/or "gentle" man. And for the most part he continued to be that way through his 9.5 years of dementia. But there were some periods and a few instances of being unkind, quite out of character. For example, during a paranoid period he tried calling the sheriff's office to accuse me of stealing money from him, and he once went to a neighbor's to ask them to call authorities to report that he was being held captive against his will! This period did not last long, thank goodness! And at the end when he was talking gibberish, he could still manage to smile and say "thank you" for small services.
In my local support group I heard caregivers describing their loved ones' behavior as extremely out of character, and others saying the essential personality shined through. I guess the jury is out on this question, and maybe there isn't a one-size-fits-all answer.
Thank God for your reply, you get the situation. Your words brought tears to my eyes because you are the first person that get's it.
I am a giver and I am also hypersensitive so it's really hard for me let things run off me "like a duck's back".
You are the first person to acknowledge that I have made a lot of sacrifices to be here to be my mother's full time caregiver. I am a grown woman living in this horrible situation. I feel that my life is on hold (I am 47) however, I would not have done it any other way.
Although my mother says she disappointed in me and my life (she has very high and reasonable expectations of me), I came to live with her to be her caregiver.
I did not know it would be this hard because my mom has such a strong personality and I am the polar opposite (more like my father who is 80 and doing well in another state).
Mom, Aunt & cousin make me feel like I am the one who is "crazy". Mom's friends from college who live in the same city as us know the situation because I have shared my story and they have seen it in person. When Mom talks to these friends, if she stars the negative talk about me, they say "you are blessed to have daughter that cares enough to do what she is doing". Her friends here from college also understand how hard it must be to have to live here after giving up literally everything to take care of my mother. They understand that's a huge adjustment within itself outside of mom's Dementia.
Treat Aunt kindly. Send her cards now and then. Treat her as you wish your cousin would treat your mother. You are the sane adult in all of this.
But do not continue to reason with your aunt. Poor old dear really can't accept reasoning if she has dementia and she can't remember the explanations anyway. Just be nice to her and basically ignore her suggestions. Continue to block your cousin's emails. You don't need to listen to her rants.
How hard it must be to hear your mother talking so unkindly about you, and after all the sacrifice you are making on her behalf! But you know the truth. You have some insight into the reasons for your mother's behavior. You do not need to defend yourself to others who do not/can not understand the situation. Letting things like this just run off you like a duck's back has got to be one of the hardest parts of caregiving. My heart goes out to you.
Thanks for your reply. I had first had experience with Dementia that ultimately led to AD with a great-aunt. I was not her primary Caregiver. I recently purchased the book "The 36 hour day" and have been in touch with AD Association's help line for caregivers when I need to vent. I know Mom's behavior is just part of the disease, but the negative talk about me just hurts when I am bending over backwards to care for my mother.
I knew early on that when I noticed my mother was having memory issues that it could lead to Dementia and that it would not get better.
My Mother's sister was married to a MD and is also experiencing Dementia herself.
My mother is not passive at all and as a retired teacher she has always been a "know it all" for a lack of better words. She was never a loving caring mother long before this disease got it's grip on her.
Aunt/Mom's sister says she cannot travel because of health issues, and I am fine with that. When I explain the situation to her, she says "I know you are telling the truth, but it's just so hard to accept", however, she talks to my mother in a different way often supporting her. She tells my mother that she should still be able to do and not do.
Tonight was just awful. I had to get off the phone with her when she started on the same cycle of thought she does every time I called her in the past.
Her daughter, my cousin, knows all about Dementia and AD. I have tried explaining in writing but was constantly being sent insensitive emails. I drew the line when she told me that I was an awful niece and, as my mother's only sister, her mother needed to know what was going on and I was wrong for not calling her to giver her updates. They both tell people that my mother will "snap out of this", because on the phone my mother says she is fine and sounds fine.
I stopped calling my aunt when each conversation she went over the same things I had already told her regarding the situation and she told me to never put my mother in a nursing home. Her daughter in a nutshell told me I wasn't doing enough to make the situation better.
My aunt says under no circumstances does her daughter need to come look after her, even though relatives have told her daughter that she's getting worse.
Do you think that a person's personality has an impact on how the disease affects the individual? My great-aunt was very passive and was agreeable throughout her illness.
I believe is that my Mom is voicing her frustrations with the situation she is in, by lashing out at me. I also feel that she is probably wanting to give the impression to the "world" that she's OK and doesn't need help and I don't need to be her and that she doesn't know why I moved to her home.
When I explain the situation to the aunt, she says "I know you are telling the truth, but it's just so hard to accept", however, she talks to my mother in a different way often supporting Mom's negative talk about me. She tells my mother that she should still be able to do and not do (like driving for example and going for walks alone). The Dr's have advised against this. The Primary Dr says absolutely no driving among other things.
Tonight was just awful. When I called to give aunt my side of the story, I had to get off the phone with her when she started on the same cycle of thought she does every time I called her in the past & I have to explain the same story over & over. Aunt also has early Dementia.
Her daughter, my cousin: I have tried explaining in writing but was constantly being sent insensitive emails. I drew the line when she told me that I was an awful niece and, as my mother's only sister, her mother needed to know what was going on and I was wrong for not calling her to giver her updates. They both tell people that my mother will "snap out of this", because on the phone my mother says she is fine and sounds fine.
I stopped calling my aunt when each conversation she went over the same things I had already told her regarding the situation and she told me to never put my mother in a nursing home. Her daughter in a nutshell told me I wasn't doing enough to make the situation better.
To give your aunt the benefit of the doubt, maybe she knows very little about it, too. And when her sister calls and tells her about how awful you are to her, what is Aunt supposed to think? If my sister called and complained about her child was treating her and I knew nothing of the health picture I'd probably get in my care and go kick some butt! Of course, now that I know first hand what dementia can do to a person I'd do some checking before I took anything at face value,
It is possible that Aunt (and maybe even Cousin) are motivated by a true concern for your mother.
I'm not sure what you mean by "not in a position to see my Mother's illness." If she is able to comprehend it, could you send her a calm matter-of-fact letter about the nature of your mother's illness, and perhaps an article or two about persons with dementia who are out of touch with reality?
I am so sorry you are in this position. It would be so much better if your aunt and cousin could be support of you. I think I'd really try to treat this as an opportunity to educate them a bit, but if that is unsuccessful, go back to blocking emails and minimizing contact with them. You have enough to do dealing with your mother; you don't need to also deal with ignorant (even if well-meaning) relatives.
She tells her sister "I can take care of myself". My brother and I know different because we see it up close and I see/deal with it more living with my mother.
I'm only 3-4 months into her early Dementia, so I know things are going to get worse.