Emotional drain
Hello, I joined today because I feel quite lost and very guilty. My mom was diagnosed with PD 10 years ago. (she is 72 now) She also had 2 spinal surgeries -has implants- in the last 3 years. My dad is her main carer. I live abroad (although I come back 4-5 times a year and spend about 2-3 months in total with them each year) mom is able to walk and go to toilet etc on her own with a walker, she sometimes has slurred speech but overall cognitively well, able to do finances, chat about people and remembers names etc. but during my visit this month she has started to say that she sees people in the house. She does this in a playful way, she is not scared. The more I give attention to this the more she interacts with them i observed. She also today said to my dad 'that girl in the other room' referring to me, apparently forgetting my name.
Both me and my dad are not sure if this is really happening, whether to take her to hospital (corona worries) or mom is trying to get attention and pity. She always had depression and been always emotionally abusive to me, guilt tripping, emotional blackmailing etc since my childhood predating her PD. If i am speaking to my dad she interrupts with random things or childish sounds trying to get attention and again this is nothing new - growing up (some 25-30 years ago) she would be annoyed at me for chatting with my dad & having a good relationship with him. (they are and were together!) Mom's conversations always been about her and her issues, she dominates, she is the best in the world and everything happens to her is someone's fault. (Her breast cancer was due to me getting a scholarship to a top uni and leaving the city and her) I feel awful writing this because she may well be deteriorating but she seems to be remembering everyones name and every detail of everything! Don't the children's names go last? I just don't want to be taking her to hospital (she loves going to the hospital & doctors)
I don't know i am really lost, has anyone had experience with on-set of dementia? It's so hard to tell how much of it is her character and how much of it is real :/ Thank you!
Thanks for sharing this, sophia.w, and apologies for the delayed response. Some of the things you mention are not uncommon in folks with PD, especially as the disease progresses. Cognitive changes, hallucinations/delusions, and PD-related dementia can occur. I thought I'd share a couple of articles that go more in depth about these issues: https://parkinsonsdisease.net/symptoms/cognitive-changes/, https://parkinsonsdisease.net/living/hallucinations-seeking-medical-attention/, and https://parkinsonsdisease.net/clinical/lewy-body-dementia-differences/. I hope this helps provide some clarity. We'd also encourage you and your dad to consult your mom's doctor/neurologist about these issues. There may be additional treatments or treatment adjustments her doctor would recommend. Take care. - Chris, ParkinsonsDisease.net Team
I wish I had more to offer you besides my verbal support. I am glad you shared your story. I hope your family finds a helpful doctor and highly recommend documenting your mom's day to day behavior for several days in a row. This information could help the doctor a great deal. The progression of the disease appears to have reached a difficult point and I wish you and your dad only the best in finding ways to help your mom while taking care of yourselves, Lorraine, parkinsonsdisease.net moderator
Sophia, today's my first day posting and I ventured out to post of my husband's progression and read your story and it is MY story. Tears came to my eyes as I saw my daily living in your words. I started to wonder if my husband actually had PD much longer than his diagnosis 5 years ago. Like your mom he was less than complimentary and manipulative in his conversations years prior. Now with PD it has me confused on responses. One minute he sounds his old self and the next minute he's says it's his PD and he's sorry leaving me thinking I'm being played. This adds such an emotional rollercoaster to daily living. One minute he's helpless and needs me for everything, the next he needs me for nothing and have no common sense. It's hard to get his only sibling and my children to help because they also "see the old him." I have sought a therapist to talk things through. I'm still looking for a support group. I guess I just want to say you are not alone. I pray for your strength...and my own.
I'm also looking for a support group for my mum as she is my dad's carer and can only find groups that focus on the sufferer not on how hard it can be to live with the new version of your spouse.
