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Want to connect with others whose parents have long-term mental health issues

janinegug
janinegug Member Posts: 2
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in Caring for a Parent

I'm new here and looking to connect with people who are caring for parents with long-term mental health issues.

My mother was finally diagnosed with co-occurring AD and clinical depression after a suicide attempt in December 2021. However, she has a long history of untreated mental health problems. Her depression and anxiety have caused significant problems for our relationship throughout our lives. She is now in AL but I'm having difficulty determining whether her concerns are real and she is depressed or they are part of the AD. When I was growing up she often manipulated the people around her to get what she wanted, and AD isn't helping with that. I'm struggling with interacting with her and supporting her, and I'd benefit from speaking with others in a similar situation.

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  • harshedbuzz
    harshedbuzz Member Posts: 4,348
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    @janinegug

    Hi and welcome. I am sorry for your reason to be here, but pleased you found this place.

    My father and my sister both had dementia superimposed on a long-standing mental health issue. IME and from what I have read, behaviors associated with mental illness and even personality, can persist well into the disease's progression which can make it very difficult to tease out what is "the disease talking" given that much of what you are seeing is your LO's "normal behavior".

    In my dad's case, he was undiagnosed but his geripsych felt he likely had bi-polar disorder based on family history and what he was seeing. I have a friend who is a clinical psychologist who knew dad pre-dementia and felt he had psychopathy. He had mixed dementia, Alzheimer's and an vitamin deficiency related form known as WKS related to years of alcohol use. My late sister likely had WKS as a complication for late stage AIDS in the last 6 months of her life. She did have a bi-polar diagnosis but also had borderline tendencies. Both remained manipulative (albeit less effectively than pre-dementia), paranoid, aggressive at times until just before they passed although as the memory loss worsened, they became easier to redirect out of their anger.

    I don't have any experience with the intersection of clinical depression and dementia. Perhaps someone else can weigh in on that.

    HB

  • Anonymousjpl123
    Anonymousjpl123 Member Posts: 680
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    My mom has always had undiagnosed mental illness. It makes this hard, especially since my other sibs can’t really be bothered with her. My experience is that therapy, counseling, this website, and good friends you can really talk to about what’s going on is essential. Caring for aging parents is always horrible but this is a special kind of horrible. You can try to keep really good boundaries between you and her, and be very clear that her illness will progress and it will be HARD.

    I’m living with this. My mom and I had a brief argument earlier this week (she was being very verbally abusive) and today when I went to see her she was talking about being so happy to see me. She said “not like you sister, R…(same name as me) who was so mean to me last week.” She kept asking who the other person with my name was. Is it her dementia? Her mental illness? Both? I may never know. I suspect it’s mostly her dementia. She is incredibly needy though she was never there for mw as a child. I am doing the best I can for her, for a number of reasons, but tangling it all out is exhausting.

    you will find a lot of good support here! Lots of amazing people in your shoes.

  • Fleabug821
    Fleabug821 Member Posts: 15
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    It’s comforting to know there are others out there going through the same unfortunately. My mom is bipolar as well so I’m not sure if that’s making it all worse. She went to her general doctor today and told of all the things about people being in her house and coming through the tv. He said he was referring her to a neurologist which I was very happy about I guess you’d say. At least we’d know exactly what we’re dealing with. New development…she’s mad at the doctor for thinking she needs to go and she’s not crazy. We are! Omg…I just can’t take much more of this. She’s become combative and nothing I do or say is right. I’m on the verge of loosing my job for taking off so much and unfortunately I can’t pay my bills without a job. My sister who doesn’t live her says try tuff love approach. Tell her you’re done if she can’t listen but how can I turn my back when she has nobody except me. I want to find a rock and just crawl under it! I think I need a therapist or call the hotline!

  • Anonymousjpl123
    Anonymousjpl123 Member Posts: 680
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    @fleabug821 I thought I would just mention that you are doing all the right things - getting your mom to her doctor, the neurologist, and trying to get her care. Definitely do call the hotline! Also, maybe focus on some things you can control. Do you have Power of Attorney (POA)? Do you have backup plans for her care, if she lives with you? It is so exhausting trying to manage this and hold down a full time job, especially when your parent is less than kind. It's actually a special kind of hell. You are not alone. Things that help me, in the short-term, are: gentleness with myself, taking baths, making sure to log on here when I feel stress, and therapy. I hope you can find some support - you are under enormous pressure, and this is not easy. I am glad you found this site!

  • Fleabug821
    Fleabug821 Member Posts: 15
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    I do have POA I’m just not sure how to use it. Making these decisions basically on your own are hard as heck! I have an older sister but she’s just backing what I say since I live here and not her. I’m just so tired and drained. I don’t want my mom to hate me and I want her to at least live what she has left of her life happier and healthier. Me as well. My BP has been high lately and I’m not over weight. It’s stress. It is a special kind of hell on earth and the only alternative is not having my mom so that’s another hell. But I must ge to bed so I can be focused on work tomorrow. Haha…Halloween was last night and I love Halloween. I’m a little kid at heart. I dress up and pass out candy. I didn’t even turn my light on. I do need to call the hotline and talk. I have no sick days left for therapy.

    Thank you for your advice and sharing. Also listening to me vent 🙃

  • harshedbuzz
    harshedbuzz Member Posts: 4,348
    Seventh Anniversary 2500 Comments 500 Insightfuls Reactions 500 Likes
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    @janinegug

    @mommyandme (m&m)

    @Fleabug821

    @Anonymousjpl123


    I posted this gifted article on the general caregivers board. It's about dementia and mental illness. I found it interesting.

    From the NYT: Dementia/Mental Illness — ALZConnected

  • Lindsay22
    Lindsay22 Member Posts: 84
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    Hi Janine. My mom died in August after suffering nearly 10 years from AD. She also had bipolar disorder, depression, anxiety, and substance use disorder in her pre Alzheimer's days. Early on I too spent a lot of time and energy trying to figure out what was existing mental illness and what could be attributed to AD. The thing is, medical tools (i.e. drugs) for dealing with mental illness and AD are so poor that in the end it really doesn't matter. It was super painful when she was around a stage 3-4 because her anxiety was out of control and she wouldn't take her meds. She wasn't impaired enough yet to be compelled to take meds which made life very very hard to manage for her and me. It actually gets easier later when all the meds are essentially doing the same thing...calming them down. Beyond the medical management of caring for a LO with mental illness and dementia is, of course, the emotional toll it is taking on you. I found out a lot of things about my childhood and my mother's inability to manage her mental illness as I took over her affairs. It was incredibly painful for me, especially since we were past the point of any real discussion or accountability from her. It's still very hard for me. I am happy to connect, there is SO much more and it is a long difficult road.

  • janinegug
    janinegug Member Posts: 2
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    https://alzconnected.org/discussion/comment/187310#Comment_187310

    Thanks to everyone who responded. Fleabug, I really understand what you are going through. It took so long for us to get a diagnosis. I kept taking my mother to the doctor (PCP, emergency rooms, etc) and essentially every time she'd mask her symptoms and dismiss me like I was the one losing my mind. It essentially took her suicide attempt to get anyone to take me seriously. In the meantime, my mother would threaten me almost every day with taking her own life, telling me my dead father would be angry with me for treating her terribly, say she would never talk to me again if I moved her to assisted living, and so on. I did actually end up getting demoted at my job because I became unreliable at work and finally got so mentally ill myself that I needed to take a leave of absence. Like you, I was pretty much on my own, since I'm an only child. I'm not sure what to advise except to say that it's really important you take care of yourself, which in some cases may mean doing things that feel horrible, like not returning the calls or accommodating the unreasonable requests. I'm not sure I would do anything different, but I wish I had been better to myself in the beginning had I known I'd be dealing with this for years down the road. It's been 2 years since the suicide attempt, and I am still putting my life back together.

  • Fleabug821
    Fleabug821 Member Posts: 15
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    https://alzconnected.org/discussion/comment/188031#Comment_188031

    Omg…sounds like we’re are all dealing with the heaviest things people can deal with! I’m sorry about your mom and I know it’s still very hard! 😞I have no clue how you’ve handle 10 years. It’s been 4 for me and I have all the respect for you in the world. It’s so hard to keep it together inside. I almost called the hot line tonight. When to my one after work and it’s awful. I was afraid I’d start babbling because I was so distraught. My mom is doing things like a kid or puppy would. Just making messes everywhere and I know it’s just because she’s not in her right mind. I told her she has to go somewhere they can help. I just don’t know where that is😥hand in there💕

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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