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juliebugs Asked October 2012

Dad has dementia, and now so does my mother might as well. She's his caregiver. What should I do?

I'll try to make this short and to the point, but the whole situation has been going on for, well my whole life, but it's gotten serious the past few years.

My dad has dementia. He was diagnosed about six years ago, and we think he probably has had it for 10 years. It's been very slow progressing, and luckily he was close to retirement and only retired a year early. My parents are fortunate enough to have money, but the fact that he may eventually need to go to a nursing home, along with my mom's bad spending habits, worries both myself and my mom. As a side note, of course I would love to be left with an inheritance, but I would rather see my parents get the care they need and go through less stress now; when my grandfather died two years ago (after requiring 24 hour care for two years prior to his death), two of the four siblings' desire to have an inheritance tore the family apart and caused major problems that still aren't resolved. So, when I mention money worries I am speaking from the perspective of wanting my mom to come to her senses so she CAN afford a nursing if need be, and not blow her money on useless crap.

So, my dad was diagnosed with dementia. He is now 69, and has some very noticeable memory and cognitive decline (sits in front of the tv all day, doesn't shower for weeks at a time, eats constantly - and he has diabetes, repeats himself/asks the same question every two minutes), but he's still aware of who people are, where he lives, major life events, etc.

The problem is my mom. I would consider what she does neglect - certainly not intentional, she loves my dad and BELIEVES she is/would do anything for him, but she just makes it worse. If I go into the way she interacts with him it would take forever, but for instance, she SCREAMs at him to take a shower, so he yells back, and never gets in the shower. The reason is that she will only think to get him washed up when he has a doctor's appointment, people coming over, etc., and so she asks him last minute. Then, her anxiety kicks in and she screams because she realizes he won't be ready in time. It drives me CRAZY. Sure, he's gotten slower. Things like showering simply take more time. But, I can get him in the shower within a half hour, no argument. And I make sure he does it the day before, and I also try to get him to shower whenever I visit - sometimes successfully, sometimes not. But, this causes my mom to rely on me. She has become so hard-headed - when I talk to her, she CLAIMS to understand where she goes wrong, but then she just turns around and does it again.

While this is simply characteristic of my mom, things have gotten worse with her in the last 2-3 years. She shows very noticeable cognitive decline, which she attributes to stress/anxiety/depression. I understand this may be true, she lives in am inherently stressful situation as a caregiver. However, she causes probably 70% of the stress in her life by the way she reacts, or by creating things she has to do, or problems that don't exist.

She has always been a shopaholic, and there is always something she NEEDS to buy, some project that needs to be done, etc. She buys in excess. I know most grandmother probably spoil their grandchildren - my daughter literally cannot fit another outfit in the closet! My mom always was messy/unorganized and bought in excess, but it really got bad 3 years ago. My parents remodeled most of the house, meaning everything had to be packed up and shuffled around. It piled up upstairs, and never was put back. Then, in my mom's typical fashion, she bought more, didn't use it (because she really didn't need it), so that piled on top of her piles of piled stuff! And it just keeps going, never getting better, only worse. She starts to clean, only giving up halfway and piling the rest of what she didn't get through in one room so that she at least has one clean room in the house (which she fills up within a week or two). The kitchen is disgusting. She has a huge kitchen and about 5 sets of dishes for the parties she used to have, so she simply doesn't do dishes until there is not a clean dish or an open space in the whole kitchen. She finally hired someone to do dishes and clean for her, which in itself helps.

I feel like, both as a daughter, and a social work/gerontology student I am neglecting my parents. But I have no idea what to do. I am a single mother, full-time student with full-time work. I can't be a live-in caregiver, and it wouldn't be fair to my daughter. And my mom refuses to get help with my dad or acknowledge that she has a problem. I constantly feel hopeless. When I am at there house, I just want to leave. I know there is nothing I can do that won't start an argument, and seeing the condition of the house and my mom's behavior, and my dad's reaction to it, and the vicious cycle that creates - all of it literally makes me sick to my stomach, makes my head spin. I go home and mope all day I get so depressed from seeing it

juliebugs Nov 2012
Thank you both for the responses...unfortunately, we have done everything you suggested. My dad gets an anti-depressant in his daily dose of medications (my mom got him somehow to agree to it awhile back, and now it just is mixed in with the 15 or so other pills and he doesn't question). My mom is also on an anti-depressant and anti-anxiety, but the letdown of her meds made her really crazy in the afternoon - got her on a longer acting version, but she messed up the dosage and was taking it twice daily instead of once! I went ot her med check just two days ago with her psychiatrist, where we realized this, so she's weaning down to her regular dose now.
My mom LOVES to entertain, but she really just can't handle it and so shouldn't do it. She still attempts to every once in awhile, and ends up drunk laying on the floor before guests arrive, that's how stressful it is for her. Not to mention she forces me to give up 2 days of my life before hand to clean her house.
She is in the process of remodeling the downstairs bathroom so that my dad has a shower. That way, he won't trail feces all over the house when he has an accident, it will stay in his bathroom or contained to a small area of the house. Very fortunate we can do this, it should be done in a week or so, and hopefully that will help some. He had a few really bad accidents last week that set my mom over the edge. I was staying there at that time for help with school because I had midterms- and came to the conclusion that I get more done at home by myself working when my daughter is asleep than I do at my parents house. I now have my daughter in daycare 3 days a week, which is all I can afford, and my aunt or mom alternate watching her the one day I don't have childcare. But anyway, when I was there he pooped all over one night. My mom came upstairs to my room and woke me up crying, and she slept with me. He said he would come up to take a shower, and if he says he will of his own free will, he always does. But he never did, we found him alseep in his bed downstairs naked from the waste down covered in feces. He went upstairs in the morning to finally take his shower, but when I came up to check on him he was laying, still naked and dirty, on a brand new upholstered couch. Well, hopefully the new bathroom will solve this problem...
I have also been putting calls in to aging agencies, looking for social workers. This should have been done a long time ago, but I'm realizing my mom just doesn't have the capacity to do these things, so we had a family meeting and myself, my aunt, and uncle are trying to take over whatever responsibilities we can for her (paying bills, shopping/errands, making calls, etc...)
Thanks again, and if anyone in a similar situation wants to talk just let me know :)

AbbyWilson Oct 2012
I I feel your pain... My 89 year old mother has dementia, diabetes, heart problems and is incontinent... she has become VERY stubborn about bathing which needs to happen daily due to the diapers... But it is her 'holdout' that she can uses as her mode of independence and it is a daily struggle... I am the main caregiver and we are fortunate to have a daily caregiver as well to help. What I wanted to tell you for your dad is that if he has medicare and his Internist recommends it, you can get someone to come in and bathe him and medicare will pay..we also have this service... another thing we recently had to start giving my mom Zoloft for depression... it took a while for me to agree to give it to her without telling her exactly what it was for ..her doc said to tell her it was for her heart...he said it was her or me and IT HAS BEEN A LIFE SAVER..SHE IS BACK TO HER OLD SELF... I have found that gentleness and walking out of the room at times to do deep breathing is the best policy...

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Braida Oct 2012
He Juliebugs. WOW, that was such an interesting story, and so well written that I could just FEEL the stress level as I read it. I can really empathise with you. It is a situation totally out of control. Your Mom is becoming a hoarder before your eyes, which is a mental problem in of itself, and it sounds to me like much of her problem behavior might be a result of anxiety and depression from dealing with your Dad's dementia. I know how this can lead to depression and a kind of apathy and hopelessness, as I have my Mom (dementia) living with me, and if it wasn't for myself making a HUGE effort to keep on going, I would tend to want to hibernate all day and not do a thing. I only keep myself pulled together for my husband and other people's sake....otherwise I wouldn't care. Your Mom really needs to get to a Dr. and possibly get on meds for anxiety/depression. Easier said than done, I know, because once the depression sets in, a person can become completely apathetic without the desire to do anything. My Mom is reluctant to shower, as well. I still entertain fairly often, and I do what you do...get my Mom in the shower mode earlier, rather than at the last minute. The last minute would NEVER work. She has her own apt. within our home, and she says "don't worry. I won't come out when the guests are here." She always does, of course. And she is always included in all of our get togethers, but I insist she looks good, and actually it is good for her to get fixed up and presentable. It adds some excitement to her life. (She sits in front of her TV alot, as well.) Your parents are both young. I am 64, and my Mom is 86. Your Dad's dementia sounds moderate? (I'm not an expert....far from it) But you said he's aware of life events, people around him, etc. Maybe he's depressed as well. Maybe he's just too depressed to make himself do anything. Would it help, possibly, if he had a few new good looking shirts to put on after a shower if people are coming? Something that would spruce him up a bit? If he had something to look forward to? Your Mom, too? You said she used to entertain. She is still so young. I'm still hosting dinner parties fairly often. It's something I can look forward to. It breaks up the monotony. If you could het your Mom to have an "organizer" person come in, help her clean up all of the clutter and mess, but not do it in a way that would be intrusive or threatening to her (because often the hoarders feel that the only thing they can control anymore is the buying, storing, and collecting of THINGS.) But I've seen shows where they can be helped. Before that happens it's just way too overwhelming to even think about making a stab at it. They look at the mess, and they know they've got a major problem, but they can't see anyway out of it which adds to the depression, and on and on it goes. I feel really sorry for YOU! If you try all of the things you can possibly try, and nothing works or they are resistant to all of your attempts to save them from their own self destruction (and possibly mental deterioration so they can't even think clearly), then you have to step away and try to save yourself. It's way too much for you to do alone. You need help from professionals who could (gently) step in and try some tricks of the trade. I wish I could help with something tried and true, but I think the depression/anxiety is key here. It could be making your Mom seem like she has dementia too. It can totally disrupt a person's normal thinking process. Sorry for this long rambling answer. Not much help, I'm sure. But I wish you so much luck with this, and feel for you in a big way!!! Take care of yourself, Juliebugs. You are a good caring daughter.

juliebugs Oct 2012
Well, i said I'd keep that short but I couldn't stop once I started! Anyway, the point is, beyond hoarding she just acts really...I don't know how to put it, just strange. She doesn't make sense, she doesn't communicate well, she has no hygiene anymore either (I have to remind her/insist that she shower and brush her teetch when she starts to stink so bad that I can't be in the car with her), I'm worried about her driving, I don't want her watching my daughter (which only upsets her and sets on her angry rampages - I worry she'll start drinking again - she was always a stress drinker, and it, for no apparent reason, got REALLY bad last winter. I told her if she ever drank again she wouldn't see her granddaughter, ever. It worked, but I used up that threat and if I do it again she won't take me serious, just get mad. She is losing common sense. She never managed money well - she didn't have to - but now it's really bad (even though she tries to conserve and freaks out over small purchases/expenses). I feel like I'm not describing it well, but as a friend who visited her last winter who hadn't seen her in years said, "it's like a light went out in her head, like she wasn't really present." MANY people are concerned about her. She refuses to get testing for dementia/Alzheimer's, because she doesn't want it on her insurance record is her excuse.

I am at a total loss. Not only do I worry for her sake, but for my dad. And for myself, I can't be the only caregiver to both of them, and my daughter. I just don't know what I can do if she refuses to cooperate or even acknowledge there is a problem.

I also forgot to mention, she is 59. My dad is 69, if that matters for any reason.

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