Any advice appreciated - Mom diagnosed with dementia

Hi @Shasan,

Unfortunately I can relate to your concern about your mum being diagnosed with dementia as my father was diagnosed with it about 8 years ago. I am sorry for you, your family and your mum as dementia is a very challenging diagnosis. I heard it described once as the long goodbye and I think that is a really good description of how it feels.

From my experience and understanding (and everyone's case will be different) some people forget very easily, some people forget certain parts of their lives but are very clear with other memories, some people forget what happened their whole lives, forget people but remember everything from the day. From my very basic understanding it depends what part of the brain is affected - a doctor explained it to me that it was like a plaque that slowly spreads.

In terms of your questions (and this is just my experience) until someone like your dad wants / needs help he probably wont take your help. Perhaps the best thing you can do right now is just to keep offering and let him know whenever he does need support you are there.

Another thing I would tell you around dementia is the feelings of loss you may feel - there is something called anticipatory grief and it is basically grieving for the loss of someone that is still physically present. The feelings are similar to those that you would feel from a loss of a loved one but can be hard to explain to others as typically people understand grief and loss after someone has passed. I read up on anticipatory grief when my father was ill and it help me understand how I was feeling a bit better. It might also be something you father may be going through.

As I said above dementia is different from everyone - my dad forgot chunks of his life but always remember me (which was a blessing because I know that is not the case for a lot of people).

I wish I could help you some more and help you find the answers you are seeking but I think everyone's journey with dementia is individual and each dementia patient needs to be responded to on a case by case basis. What I did find hard in the beginning (I guess because I didn't want to accept it which I think is a very normal response) is that when I did allow myself to understand and accept that this was my dad's new normal (as much as I didn't like it) it did help me deal with things a little easier.

I wish you, your mum and your family all the best.

FloatingFeather

Hi @Shasan

It's so great to hear from you. But I'm so sorry to hear about your mum's dementia. It sounds like it's really impacting you, and understandably. I really have no wise words to offer you except that I'll be thinking of you. I hope others can chime in and offer you some advice and support too.

Keep reaching out,

Hanami ❤️

Thank you @hanami

@FloatingFeather I'm so sorry to hear that you're going through this with your Dad - he sounds like such an incredible person and it's so touching that he remembers you 🥲

Thank you for your courage to go to the topic that's so hard for you in order to help me!! I see you and appreciate this so much.

Thank you, I'll definitely read up more about anticipatory grief. It might validate my entire childhood as my mum has had mental health issues for a long time and I always say that I've never met the real her, who is she behind all things anxiety, schizophrenia symptoms? I used to be angry all the time growing up coz I didn't have a "normal" home but as an adult, I accepted she's who she is and was able to see the situation with compassion and sympathy for what she's going through - I think my husband's unconditional love somewhere filled that void and I was finally open to give the love out to her.

I feel extremely sad for her & my dad who has to care for her. I feel like I'm losing both parents coz he's 83 yo already and if he keeps up with the stress of physical and emotional pressure of being a carer + cook + cleaner without taking any help, I'm afraid he won't make it too long either - because I'm not ready for that! I've always felt like I had one parent, and accepted I had no mum, so it's really hard!!

Anyway!! My posts always seem to crossover between lived experience and carer - so I apologise to anyone who might find this is hard to read, let me know, I'll move it out to lived experience of required.

My mum's injection needs to be done tomorrow, my dad's really unwell, my useless brother doesn't even know her routine or requirements - she's finally stopped listening to auditory hallucinations so I'm extremely keen to ensure she gets her meds on time! But my dad is refusing to take my help to get the meds home delivered!!! His reason is that he gets a 12% discount and that he doesn't have the correct change if he needs to pay them on delivery! I understand the concern but his nonchalant behaviour about the timing of her meds drives me nuts. I can't get angry at him but it makes me furious that they still don't learn, and she needs to suffer.

I also feel annoyed at my dad that this happened to my mom coz of his domestic abuse verbal, I've seen it growing up every day.

So yeah, lots going on! But I am his only emotional support as he doesn't lean on my brother at all or ask him any help.

I'm proud of whatever I'm able to do all the way from here - while my dad's too busy protecting my brother's feelings and ignoring my mom's medical needs.

It's frustrating.

Hi @Shasan,

Thank you for your kind words and your post. In all honesty it wasn't an easy post to write but I felt that my experience could be of some benefit for you (and anyone going through this). I feel like sharing these type of very challenging and deep experiences are at the core of peer support work. I do really appreciate that you `saw me' 🙂.

Your feelings and frustrations in your childhood make sense - as we got older we may have the ability to better see the whole picture, reflect on the past with more compassion and wisdom. It is lovely to read that you have a supportive husband that can help fill some of the voids you craved. It sounds like you are lucky to have each other.

What is happening to both your parents does sound very hard for all involved. Watching our parents age and almost becoming `the children' is a strange transition (at least it was for me). It can also mean we are stuck a bit between a rock an a hard place as you want to care for your parents (in your case help your dad more and ask him to pull back a bit for his own sake) but then they have the ability to pull the card `you can't tell me what to do, I'm your parent'.

I understand why you are keen for your mum to have her medication at regular intervals - it does sound like her receiving medication in a timely and consistent manner is really beneficial to her. Is there way you can talk with your dad about having a schedule for your mum's medication - could the GP talk with him and let him know also how important it is that your mum receives her medication at certain times. I agree, it is a shame if your mum is suffering unnecessarily.

What I have learned as I have gotten older is as much as I may want people to act a certain way, do a certain thing, etc at the end of the day the only one I can really control is myself. Just keep doing the best you can do because that is amazing. You are in a really hard spot with a lot going on and you also need compassion and support.

Please keep reaching out when you need to - we are here for you and understand how hard things are for you and your family right now.

Warm wishes,

FloatingFeather

Hello and hugs @Shasan

touching base to see how you are doing today , hope you are going ok

Hello @Shaz51 🤗

Your text brightened up my day - thanks for the caring check-in!!

I'll post an update on the lived experience forum 🙂