Help needed: mom suffers from Panic Disorder + Dependant Personality Syndrome + likely Parkinson's

Living with Parkinson's Carers, friends and family
1

Hi all, I feel that I have too much on my plate right now and need to share my and my mom's current situation.

(And sorry about my English, I'm not a native speaker.)

I'm the youngest of four children, 25 years old, living close to my parents with my husband and cats. My mom has been suffering from a panic disorder for over 10 years, with better and worse phases in between. Currently she is not able to leave her house. Sometimes my dad takes him to a car ride, but mostly she just stays inside. A psychiatrist visits her every two weeks or so, to discuss medication and give therapy.

For over three years, my mom has shown signs of Parkinson's and they have gotten worse over time. It all started with a slight tremor in the index finger of my mom's left hand. Currently, she has a bad posture, stiff muscles, shaking in her whole body, walks slowly and with short steps. Also, her balance and memory have slightly deteriorated. My mom went to a neurologist two years ago for clinical tests but the doctor told her to wait and see.

Right now my mom is too scared to go to a doctor. We have tried to persuade her but she just insists she can't, that she's too scared, but that one day she will tell my dad to book an appointment for her. She keeps saying this over and over and nothing seems to change. We feel that we are out of options. 

It hurts me so much to watch my mom suffer. Also, my parents seem to think I am her second caregiver. Whenever my dad goes on a holiday, I have to go to live with my mom because she has an irrational fear of being left alone. Physically she is still independent. 

Once I told my parents that I have to have my own life and that I DO want to visit my mom often, but I can't be obligated to be always available, that I need my own life and time to unwind. At first, my mom and dad accused me of being selfish, saying things such as "think about how much WE have helped YOU". One time my mom told me that I have "damaged our relationship badly" and "unlike you, your sister always comes to see me when she is needed to" (my sister lives in another country so that was totally unfair of my mom). I visit my parents several times a week anyway. 

The problem is, I think we are making mom's problems worse by nurturing her feelings of dependance. She needs to feel that she CAN survive being alone every now and then, as long as she is physically able to take care of herself. Yesterday my dad told my mom that we can not be looking after her 24/7, or else we have to pay for a trained nurse. My mom simply replied: "I don't want any stranger in my house."

Next week my dad is leaving for a holiday for six days. As he asked my mom what souvenirs she wants him to bring her, she replied: "You don't have to bring me anything, just let me wither away here."

My three siblings all live in different cities and honestly, I feel unfair that I have to take all the responsibility . I am not meaning to sound selfish but I have started to have symptoms of anxiety disorder and eating disorder which I have tackled earlier in my life. Today I booked an appointment with a psychologist to get some things out of my chest. 

I am tired, confused and overwhelmed. So is my dad. I understand that my mom is afraid of a severe illness; who wouldn't be. Yet trying to be a good daughter and still hearing accusations of being selfish is so painful. I don't know what to do. I am afraid of the future all the time.

2

Maybe ring the helpline and ask about peer support. You obviously need to talk with someone.

3

Hi Lumi,

We are sorry to hear about your situation and that your Mom is struggling. It does sound like things are really difficult for you all at the moment. As benji suggests, you might find it helpful to call our Helpline. One of our advisors will be able to talk through the issues you mention, and discuss support that is available for you and your family. Call free on 0808 800 0303. Opening times: Monday-Friday: 9am-7pm, Saturday: 10am-2pm.

Best wishes,

Joanne

Digital team

4

Hi Lumi, Day 2 on this Forum. Tried replying yesterday (it would have been my first message) and wrote lots but didn't manage to send it!!! Pressed wrong button. I'm really feeling for you. I've been (still am) in a similar situation to you - a daughter (eldest of 4 siblings) of a Mum with PD (now sadly Advanced) who is trying to do her best by both her parents but sometimes not managing to 'get it right' by them and then feeling bad, guilty and, I have to admit, resentful sometimes too. It is hard - for them, but for you too. My Mum had a lot of anxiety/panic/depression before she was diagnosed 18 years ago when she was 58. She knew that something was wrong physically but was really frightened of what it might be and how she was going to cope with it (my Mum was a doctor for a wee while and also worked in a Neurology ward and had treated patients who were very ill with Advanced PD & other neurological illnesses). She 'self diagnosed' and thought she had Motor Neuron Disease because of the symptoms she was experiencing. She didn't want to see a GP however, despite us trying to persuade her. Eventually one of my brothers forced the issue (after a really bad night where my Mum had been very anxious and extremely upset) and he told her "Mum, this isn't right, you can't live like this dealing with all this anxiety and upset I'm calling the GP". This lead to her seeing him and she was diagnosed with 'Atypical Parkinsonism'. For a long time after that she spent a lot of time recording her symptoms (and many were the non motor symptoms - not really recognised as part of PD at that time!) on the laptop (which wasn't particularly easy for her as she was struggling with fine motor, repetitive activities e.g. writing, putting on face cream etc). She thought that she had been given the wrong diagnosis, that her 'hand problems' were due to a frozen shoulder from pushing a piano) - she wondered if she had M.E. as she was very exhausted a lot of the time. Anyway, things have moved on since that time, and her illness (whatever it is and I think it is very likely to be PD & that is what she has & is being treated for) has progressed and her life certainly is more difficult for her (and for my Dad too). Anyway, sorry that's not helping you (but that's the background story)...

What, I would advise Lumi, for what it's worth, is that you do phone the helpline. Speak to someone, get things off your chest which people who understand the issues you and your Mum and Dad are experiencing. I would suggest that you keep gently pushing/persuading your Mum to go to the GP (her mental health issues may well be related to PD) and speak to her Psychiatrist too about her reluctance to see her GP. She does need the support (even if it's just to talk things through about what is worrying her and how she is feeling) and so do you and your Dad - it's really hard dealing with and seeing you Mum struggle emotionally and physically - I do know only too well. My Mum has avoided seeing her GP (still does) and it's taken a LONG time for her to accept support (and therefore for my Dad to agree to it too - he didn't want to go against my Mum's wishes which would also make his own life difficult by upsetting her!). However now that they have carers coming in and other health professionals visiting them, they are finding that it's not so bad after all. My Dad, in fact, wishes it had happened years ago!!! I wish I'd pushed things a little bit more (like my Dad I've found it difficult - I'm too emotionally involved, I empathise with my Mum, I try to 'sort' things but then she feels that she has no say and gets upset and then I feel bad, guilty & a whole host of other negative stuff. It is a difficult balancing act supporting your Mum - it's her life and her decisions after all, but her decisions also affect your Dad and you too! You can offer her advice and support her from a position of loving her and wanting her life (and your Dad's too) to be happier and easier. That is actually what you are doing, you are being a loving, dutiful daughter - so try not to beat yourself up. You deserve a life too!

On a practical note I'm using 'guided meditation/relaxation videos' (I really recommend "The Honest Guys" on You Tube) to help me each day (to lift my spirits I listen to /watch their "Good Morning" 4 minute video every morning when I'm having my breakfast and I generally listen to one of their many relaxation/help you sleep videos every night). I used to think it was all 'mumbo jumbo' but it has, I'm sure, been helping me to feel more positive and better about myself. I've also used it with my Mum to help her relax and go to sleep. (Sleep disturbance and insomnia was a big issue with her too early in her illness along with the anxiety and panic).

Good luck Lumi and my very best wishes go to you, to your Mum and to your Dad too. Take care of yourself please, you are allowed your own life. Tx

P.S. I'm 52 - quite a bit older than you (though not wiser!!!), and so is my Mum (who is now 76) but I read your post and felt we had some things in common. If you are only 25 your Mum must still be quite young? 

5

Hi again, just thought to give an update.

So, this April, my mom got diagnosed with Parkinson's, as we expected. She is taking her first medication now but so far we haven't seen much improvement. Mentally speaking, the situation has gotten even worse. She's still not able to leave the house. My dad is going to see her neurologist for her.

My dad is now abroad on a holiday and my brother is looking after my mother, as I work in a different city. Last weekend I attended a friend's wedding. I managed to forget everything for a while. In the middle of all the laughter and wine I decided to call mom. It was a mistake. She cried and cried and cried. She told me that she can not take it anymore; my brother feels like a stranger to her; she wishes I could be with her; it's so good to hear my voice.

My mood was ruined. I felt so so sorry for her but at the same time I was angry: why couldn't she just be a normal mother and lie to me a bit - everything is OK, she's doing fine, just have fun at the party? She knows that I've been anxious and fearful and I desperately needed a weekend off.

At the same time I feel extremely selfish to have these feelings. But I just can't go on feeling sorry for mom and absorbing her every negative emotion all the time. Sometimes I feel that she wants me to emphatise and be sad too. Once as I started crying when I was with her. She sounded almost proud as she told my dad: "I got Lumi cry as well!"

Then there's the guilt. I feel guilty for rejecting her negative feelings. I feel cold and selfish even though this is what I have to do. There is no other option.

I even feel selfish for getting a job in a different city; I'm moving away for a year. At the same time I know this is good for me because I can not make mom better, no matter how much I would like to.

Thank you Tricksy so much for your support and kind words. I'll definitely try the guided meditations. I actually found a Buddhist center 200 meters from my home, with long guided meditations each Monday. I already feel good about that, knowing that I can get involved in a community of people who understand, even though we do discuss our problems there.

6

Lumi

you said a psychiatrist is visiting your mum every 2 weeks, can you have a word with him to see if he can persuade her to see gp for referal to neuro? Just a thought.

And shout and scream as loud as you want here. I have now high blood pressure as I am constantly worry about my husband and his Parkie and his non motor friends. It is just the way it is. Glad you found a buddhist centre and go to meditations. I wish there is something round here like that. Make time for yourself sad to say treat your mum as a patient and no longer your mum, when she is trying to lay the guilt trip on you.

Good Luck