Are there things that helped you cope?

Mishka96

Hi I'm new here, my mom had been showing signs for over 2 years now. This summer they finally diagnosed her with dementia, I forget the exact type but they believe it was caused by her sleep apnea and not controlling her diabetes which decreased blood flow to her brain. Regardless it has definitely progressed quicker than I anticipated this past year. At first she just struggled with talking, lost track of what she was saying mid sentence or would get stumped on a certain word she couldn't remember and then bc she was focused on said word she forgot everything she had said and wanted to. She already has forgotten how to use the shower, she couldn't wrap the gifts herself this year, she forgets my second brother's name, she'll call us by a different name (usually a pet's name), and she forgets what has been said even if it was only a minute prior. I knew this all was going to happen but I didn't anticipate so quickly. I know things will be up and down, and I'm trying to focus on living in the present with her instead of hyper focusing on what else is to come. Today when driving to work it hit me that this Christmas may be the last one she's mentally present for and I've been a mess since. I'm 27 and my mother will be turning 63 at the end of the month. I kind of am hoping y'all will have advice to help me attempt to cope better than I am currently. It doesn't help that my mother and I didn't have the best relationship so although I know time is ticking and I should spend as much time as I can; I struggle bc being around her brings up a lot of bad memories and now I'm being constantly reminded that she's deteriorating in front of me and will only get worse. I never thought this would happen, my mom's health wasn't great but I for sure thought I'd lose my dad first. Which opens up another rabbit hole bc my dad is bipolar and ik this is probably extremely hard for him as he is caring for her. I did start smoking weed again to try to give myself moments of peace even though it just zombies me and when I come back to it's still just as painful. Sorry for the ramble and lack of streamline thoughts etc, again just looking for support from people who are or have been there. I really need someone who actually understands and doesn't just say I'm sorry idk what to do to help

christine_b

Hi Mishka! I’m so so sorry you’re in this situation. Mine isn’t so different - except I’m a bit older at 42, my mom is 66 and was dxed w Alz almost a year ago although she’s had (much more mild) symptoms since late 2020.

A friend of mine’s mother had dementia and she had a complicated relationship with her mom prior to her getting sick. Which is to say - there’s so much mourning with dementia. Mourning someone who is still there, who isn’t really, and the anxiety that comes with waiting for the next thing.

I am afraid I can’t do much better than “I’m so sorry” without much advice - but if you aren’t getting therapy, I would recommend starting there to at least process your past with your mom and current situation. You might want to discuss antidepressants for you if you’re not taking them.

As for things being triggering for you while being around her, is she willing to come out with you someplace where maybe the triggers aren’t so strong for you?

You’re not alone.

SusanB-dil

Hi Mishka96 and christine_b - welcome to 'here', but sorry for the reason. This is the right place for advice and commiseration.

Who has DPOA and HIPPA accesses for mom? You can tell her doc what is going on. Without the authority, they cannot get back to you, but they can listen. If she is reluctant to go to the doctor, you can tell her it is for insurance purposes. Check out a local neurologist and get an appointment for her. They can prescribe and adjust meds for agitation.

'this' is hard! My mom thinks I'm her sister. We didn't have the best relationship, either, but it is still rather disconcerting that she no longer knows me.

You can check out the various 'Resources' here on the website, and also check Tam Cummings videos.

darcytg

Hi Mishka,

The only advice I can offer is become educated on this disease and how to be with a PWD (person with dementia) in kindness.

Resources:

Care blazers videos

Tam Cummings videos

Just be you and show up as best you can. It wont be perfect and that's okay.

Take care of you and encourage and support your dad to take good care, too.

Mishka96

https://alzconnected.org/discussion/comment/193281#Comment_193281

I am in therapy, have been for awhile and we have talked about my mom. Also on antidepressants, my psychiatrist gave me recently a "booster" to take with it. I've taken it before and it helps, I guess I've been being stubborn and trying to find non medicine routes. Mostly bc the booster tends to make me gain weight or at the least hold it even if I'm exercising and eating less.

Regardless it's not so much that my mom does things that trigger me. Ironically the dementia taking away her ability to communicate well has somehow helped? Prior she would have a horrible habit of never actually listening, you could tell her a story that takes 4 or 5 mins. By the end she'd either say nothing or openly admit that she wasn't actually listening and ask me to repeat. I'd say it was early warning signs, but alas that is just how my mother was all my life. She doesn't do anything like before but just being around her makes me think of growing up with her. I do see my therapist today and hope she may have some helpful insight. It has shifted as well, at first I was upset with her past actions but now I've come to be upset with myself for never appreciating the effort she did put in even if she was shitty around those small blips of effort. It's quite confusing and I've just been struggling to navigate it.

I hate I'm not alone. Thank you for your comment though

Mishka96

https://alzconnected.org/discussion/comment/193345#Comment_193345

She has been to the doctor, thankfully early this year my dad set her straight and they got the ball moving. I think it was also beneficial that she was still working as well bc eventually she came around and admitted she wasn't able to do her job anymore. She doesn't really have anger issues, she does tend to get flustered and upset when she forgets her words but she's been handling it well(at least externally). Idk exactly what her treatment plan is, I do know she has lost like 50 or 60 lbs which is good bc she was about 120 lbs overweight. I also know my dad gives her these vitamin shots? I'm not exactly certain, my dad has taken Drs advice but also is into natural remedies.

Yeah I'm not ready for her to forget me, it's already a bit upsetting when she calls me by one of our previous pets names. She's forgotten my 2nd brother's name, luckily she knows who we are but is just messing up our names. I will check out those videos and the resources for some extra support so thank you for that and your kind comment

Mishka96

https://alzconnected.org/discussion/comment/193347#Comment_193347

Sadly or happily, I do understand dementia to a certain extent. When she first got her official diagnosis I went down the rabbit hole of Google trying to learn everything. Which was partially problematic since her dementia is specifically from her uncontrolled diabetes and not using her sleep apnea machine. Some people have tried to argue that but that is what the Dr told her and my dad (my dad told me such). On top of it, her family has zero history of dementia. I was very upset with her at first bc my dad, my 2nd brother and I have all tried to get her to be healthier, control her diabetes/diet, lose weight etc since I was as young as 16. She just never listened and did what she wanted and now everyone is suffering with the consequences. It's especially frustrating bc my grandmother (mom's side) has had diabetes for over 30 years now, I believe, yet she is somehow in better health (as much good health as one can have inching into their late 80s early 90s).

Ramble aside, I will take your advice and look more into how to help her and by extension myself. I do know to a certain extent some tricks to help her and they have been helpful. Thank you for your comment and support