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

janinegug

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.

harshedbuzz

@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

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.

mommyandme (m&m)

First, welcome and Im so sorry for this situation you’re in!

I had difficulties determining whether my moms behaviors were just her attention seeking or actual dementia talking. After I moved mom so I was her primary caregiver, it took a lot of time for me to sort out my own feelings. And believe me I wasn’t 100% successful, not even close. I hadn’t lived with her for close to 40 years and was out of state. I resented her seemingly narcissistic actions and comments. It took me back to things I hated from my childhood and young adulthood so I was forced to sift through my mother baggage. As the stages progressed in her disease journey it was easier to see the separation of her normal stubbornness and dementia behaviors. Still, I had to walk away a lot, take deep breaths, cry into my pillow when I was in the other room and come to this forum to vent, scream and get wisdom from those that knew exactly what I was going through. Sometimes I didn’t walk away with my frustrations which made things much worse, mainly for me.

I figured out that this journey with mom wasn’t a time to try to work out anything, that ship had sailed. So in being her caregiver I had to put her safety and physical needs first. I learned more patience with her and kindness. I loved my mom and she loved me, which is one of the only reasons caring for her was bearable. My brother gave me two weeks before we moved her cause over those 40 years, visiting for more than a few days normally had me pulling my hair out. My bro felt the same and exclaimed he couldn’t do it. My possibly short term caregiving role turned into 2.5 years and her dying in our home with me by her side. It was all worth it. If she wouldn’t have been gentle and compliant I probably would have placed her. (I thought of placing her often even so) Also we brought in help so I could get relief which was another reason I could keep her at home. Mom fortunately set up finances for her long term care well before her diagnosis which was an incredible gift to my brother and I…and yet another reason she got to stay home. In the end, I was able to tell her I forgave her for things she did in my life that hurt me and to ask her forgiveness for things I did wrong. It’s an incredible journey and so difficult, it changes us. I do thank her for the privilege of being able to help her through this daunting disease. I know she thanked me too.

This is what I came to learn and often recite to myself and others: “We (caregivers) must ACCEPT and ADJUST because our LOs cannot.” When I accepted the new reality for mom and adjusted to it, things got better, again mainly for me. Those new-normal milestones are often boulders which we caregivers must move aside, not an easy challenge often. If you can accept your moms behavior as how it’s going to be…you will adjust and find things that work for your own sanity and peace.

Keep coming back and thank you for sharing!

Fleabug821

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

@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

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

@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

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

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

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💕