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I'm fortunate enough to be here for my mother suffering with dementia. She had very low self-esteem as a young woman, befriended just about everyone she met and tried to give us the best life she could.
But she never got over my dad divorcing her.
When my brother died, I started noticing signs then but I had no idea what dementia was, let alone even how to check for something of that nature.
It was when my dad died that it became apparent that there was really something wrong in her responses.
One day my sister came up from NC with her daughters and we went to McDonald's to buy my mom something sweet. When my niece's husband came in with the shake, my mother got very upset yelling: "I ain't ask for this! I always get the big one! I don't want this thing!"
Eventually, the noise made behind that made her burst into tears and she stayed emotional until she got a bigger one. I knew then something wasn't right.
Recently, I have had to turn down a higher paying job...this after going through a divorce myself, and my single life is on halt. I watch her anywhere from 12-14 hours a day, cooking all her meals for her, cleaning the bathroom behind her all day and constantly being on alert that once I drop her off, I may have to stop what I'm doing to retrieve her from her walking voyages she took all the time and still does.
I could be selfish and say I no longer have a life...but I do. It's looking after my mom just like she did me for so many years.
Maybe I don't have a beautiful woman in my life to look after me, to rub my back when it hurts from all the work I do, not being able to even pay some bills I need to because of not being able to pull another job...or whatever freedoms I've lost...and this is where many people get frustrated.
It's a VERY hard thing to except to think you no longer have the freedoms you worked so hard for in life.
Imagine how they felt when you were born...it was a 16-18 year sentence of love that got you here and on your feet.
Maybe things will get better...maybe not. But as long as I have a breath in me, she needs me now. I have siblings who don't help much at all and can't because the temperament they display would concern me. So since I'm the only one, so be it.
Maybe God knows I'm the one he choose for this assignment until he gives me something different. I'll survive.
Does that mean you have to put up with it? Certainly not. Figure out how you and your husband can move and do it as soon as possible. Before you go, call APS, tell them that Grandmother is a vulnerable adult with dementia, she needs help, but you cannot provide it and you are moving.
Something many of us grapple with is trying to come to terms with what is going on in the mind of someone with dementia. Learning more about dementia may help you there. People with dementia often become obsessed with certain things. It is strange that often they lose memory for many recent things, but not for the obsession. We have to find ways to cope with the obsessions. Will you be able to find your mother a good geriatric doctor who understands dementia? That will be a big help.
Try not to be angry with your mother. That is easy for me to say, but I know it is so hard to do. We are only human and some of the things they do can add so much stress. People with dementia don't learn very well, though, so we have to learn things that work. For example, would your mother accept that your father is away at a meeting, so not available to answer her calls? We each know our parent best and can figure out ways to calm and distract them. There are also some medications that may help if they are needed.
So sorry that you are having to get on the dementia train with us. I am so grateful for the people here, because they know what we go through. It helps so much to have a safe place to vent and get some suggestions.
Holding on to all that anger can't be doing you any good. Ten years ago she chose to live near your sister. That might have worked splendidly, except Dad got cancer and so did Sis. Not Mom's Fault. Not Your Fault. Sad? absolutely. Worth holding anger over for 10 days, let alone 10 years? Umm ... I really can't see it. For your sake, let it go.
Mom has dementia. Not Her Fault. She doesn't operate in the reality where her husband is dead. She doesn't react appropriately to normal clues about time -- either time of day or time of century. She is obsessed with her late husband. All of this is Not Her Fault.
It is appropriate to be angry at the dementia. But she did not sign up for that just because she chose to live in New Jersey. Frustration at her I understand. Anger? That is a little harder for me to grasp.
I hope you can now bring her closer to you. That would help. I suspect what would help at least as much is getting to a calm acceptance of her disease yourself, and perhaps learning about it to know what to expect. I suggest finding a support group for caregivers of persons with dementia. Or if group meetings aren't your thing, consider a few sessions with a therapist who can help you sort through your anger. You deserve all the help you can find -- caring for someone who has dementia is extremely challenging.
I hope that your mother is paying room and board and/or for care. (Having a formal written agreement for this is a good idea.) Consider the extra water costs as being paid for by her, if it makes you feel better about it.
It is funny what particular things jerk our chains, isn't it? Here you have gone and built on to your house in order to accommodate your demented mother. You spend hours a day ensuring that she is safe, and as content as possible. You took her out of nursing home to provide the care yourself. She is infringing on your privacy and on your ability to be spontaneous. And what drives you to distraction? That she uses a lot of water washing dishes! Ya gotta laugh, right?
As captain suggests, try to find a way to minimize the water usage. Think about it as something she is paying for, or that you are willing to pay for as part of her therapy. Don't sweat the small stuff. (Compared to building an addition to your house, and compared to the tangles and plaques building up in her brain, running water is small stuff.)
Roxanne I hope this doesn't sound like criticism. You feel what you feel and there is no need to feel any guilt over it. I'm just offering another perspective, in hopes it may lessen your frustration.
Bless you for caring for a woman who really needs your care!
guilt comes with the territory and its just devastating. there are no do overs on this so do a job you can look back and feel good about. my mom has been gone for 6 months and when i look back i see mistakes but i see a sob learning on the job too. i got respite so i could attend an alz seminar, never regretted it cause it made me realize my problems were in no way unique but well documented and shared by many. i think your best medical / caregiving advice comes from the uk as they dont have the medicine for profit motive and the info is clean and simply worded.
I think you are right and that I will feel better about taking more of a role in her life. After seeing her through cancer and going to all her appointments and chemo sessions I think people came to expect and rely on me to look after my mom. By people I mean my brother, my uncle and my Grandpa.
And I didn't mind, but after her cancer her brain just seemed to go to mush. And dealing with her since has been extremely frustrating. Like other people have said here, it is like dealing with a child who doesn't remember what you tell them, and who can't learn how to do things.
When she got sick with cancer I had to reorganize her finances and have my grandpa help with her financially. My Grandpa is in his nineties and is in denial about her dementia, he doesn't think anything is wrong. And he is suspicious of me when I ask him for money on her behalf because he thinks SHE will ask if she needs money. But she never does because guess what she has dementia !!!!!!! And when he does ask her directly if she needs money she says she doesn't need any. We have been working with my uncle to set up an automated deposit so hopefully this will improve things.
I do all her banking on line (just in case my Grandpa wants to see a paper trail of where the money is going I can print an on line statement). My brother and I also have POA.
I want to hire her extra help but that means asking for extra financial help from my Grandpa. I have seen a social worker about my mom and it seems like my mom put on a good show for them or was having a "good" day on the day we saw them. But that's besides the point.
I really doubt my mom will accept strangers into her home which is why I want to hire someone privately. From what I understand publicly hired nurses will come to visit my mom but unlike private it won't be the same person coming to her home each time.
I guess I could at least try to go the public route at least. Maybe it is better than not trying. My brother and I are meeting with a nurse that is going to reassess her next week.
My mom is saying and doing really cooky things, her friends call me to tell me she says she doesn't know she has a grandson and she thinks I 'm a banker. Which I am definitely not lol. She said the other day there were little kids in her apartment but she had to go and run an errand and they were gone when she got back. It is really strange as she doesn't know any little kids.
She speaks about my brother and I to her friends as though we are just her friends and not her kids. On her birthday she looked at me and asked me when my birthday was and when I told her she said to me "that's my daughters birthday" . She has been walking over to my place in the dark every day this week thinking we have plans when we don't. I get so mad sometimes I have to just get off the phone. It is so frustrating listening to her. I can often snap at her , she only seems to "get it" when I get mad .....for example I had to tell her "MOM, you cannot walk in the dark you could get lost and die in the cold" stuff like that. Then afterwards i feel bad, I just feel like I don't have the patience or personality to deal with this. And sometimes I think she's better off not talking to me because I get so frustrated with her.
Anyways I just needed to vent.
It is so frustrating because it is such an uphill climb I don't even know where to begin. Thanks for your support jeannegibbs it is nice talking to people that understand what I'm going through. You're right I need to take more of a role and hopefully I'll feel better and she will have better care as a result
I think you will feel better about yourself if you take some role in seeing that she has good care. That DOES NOT HAVE TO BE PROVIDED BY YOU PERSONALLY. You do not have to check on her daily. If she needs daily care, work through an appropriate government or private agency to see that it is arranged. I don't know who "everyone else" is who expects you to be there for her. You can be certain that MANY people do not expect that of a child who was neglected or abused.
Everyone does not expect you to check on her everyday.
I helped her through cancer and took her to all her appointments when I could. i checked on her every day. then I got pregnant, and now I have my baby and most days i hardly make it out of the house. When i have free time the LAST thing I want to do is check on my mom. I feel like it doesn't make a difference and I can't handle her constant cleaning and obsession with vaccumming.
I feel like because I'm her daughter everyone expects me to check on her every day. I can't handle checking on her, sometimes she doesn't know she ha a grandson and it angers me. It makes me feel insignificant like how i did when i was growing up. she's like some crazy old demented woman who used to be my mom. I feel like I'm a terrible person for feeling this way. She's only 67. And her dementia is rapidly taking over.
I am sorry for your challenges, but I do understand. I have been caring for my 86 year old mother for about a year and half now. We do everything we can to keep her active and give her a good life for whatever time we have left. We took her on a cruise in 2012 and planning one more for 2013. My mom is being tested for dementia right now because her behavior changing.
The changing of behavior is really tough on my husband as well, but I try to remember that she is 86 and I have no idea how I will be at that age. I have no children so I won't have anyone to care for me.
My best suggestion is if she takes a nap, take a deep breath or if you can have someone site with her take a couple of hours to yourself. My oldest sister is the only one of my siblings that will attempt to help me. She will sit with mom so I can have some alone time and that might be what you have to considers.
So good luck and just remember to breathe. Also in my book it is acceptable to sit and crying letting the frustration out.
I am also seeking outside help to assist me in the adjustment of being a full time caregiver. The VA provides a therapist that I meet with every two weeks. Maybe you can go talk to someone. I have found that extremely helpful.
It is very possible, though, that with your loving care Mother will live long enough to go through all of her money. Then neither of you will inherit anything (though Sister will already have had a big chunk of early inheritance and you will have nothing.)
If mother does need to apply for Medicaid within the next 5 years, her money that you gave to your sister out of the goodness of your heart (against your mother's wishes, it sounds like) will be considered a gift and will cause penalties.
(Sigh. Maybe this comes under the heading "no good deed goes unpunished.")