Mom diagnosed literally 4 days ago

SaveFBuelr

Hi Everyone,

I don't even really know where to start with all this. The diagnosis was not a total shock - my sisters and I could tell my mom was not how she used to be for a while now. Us having to repeat something we literally just said, Mom really not remembering much of anything, dwindling daily routine as far as personal hygiene and meals. But since the diagnosis I have had stomach knots and feel ill just thinking about it. I was supposed to visit her on Friday but I didn't because my stomach was so bad. I know I need to accept this so I can get together with my sisters and figure out some sort of a plan to take care of her. But honestly I don't want to face all of this. How the heck do I calm down about it all? I mean even having to coordinate things with my sisters is going to be stressful because not everyone is on the same page and personalities will clash so I know arguments will erupt. I was staring out the window before thinking there are so many people out there dealing with this...but how does one even begin?! It's just very upsetting.

Thanks for reading,

Carole

smbren

So sorry to hear about the diagnosis.  

Where to you go?  First steps?  

Well, as you said, you've known for a while.  So the diagnosis probably doesn't change what you have been doing daily for her.  I can tell you that when I finally got the diagnosis, it was just a confirmation of what we already knew, perhaps a little bit more clarity on a diagnosis.  But it didn't change my mother's care.  Sure, now that we are seeing a specialist, we have tried different medications and that will be something you will work with the doctor on, but from a day to day, that diagnosis shouldn't change much immediately.  

As for siblings... I think many on here will tell you horror stories of dealing with siblings.  I could myself.  One who is somewhat in denial about it and doesn't want to get involved, but will when I need him to.  The other, well, she won't listen to me but also thinks that helping is just sitting on her a** in the same room with mom staring at her phone is helping.  My sister hasn't talked to me in months.  If your siblings are there, present and helping, then you do need to sit down regularly and talk about how she is doing, what things are a problem, what things are good, etc.  But most often, one person seems to take the brunt of it.  And in my case, I've stopped trying to recruit them and just do what needs to be done as I don't have the energy to fight them along the way.  So I work with my dad who is pretty much stressed out and do what is best for her.  

Between this forum and local support groups (some are zoom now), you really can get great help on specific needs to help with your mom.  But unfortanately, there won't be any great way to help change siblings... 

Remember, take time for yourself.  This could be a spa day.  Could be dinner out.  Perhaps you visit your mom daily and maybe you start to take 1 day a week that you don't and you call.  If you don't take time to care for yourself, you won't be able to care for someone else.  But you can do this.  

Being a caregiver is a tough job, but it also has it's rewarding times as well.  Who ever thought that as her son, I would go to Ladie's lunch with my mom?  something that was monthly before the pandemic with her besties.  So while there are so many tough times, make sure you stop to enjoy the good times while you can.

Cynbar

Does your mother have all her financial and legal affairs in order? That would be the first place to start. Find a certified elder law attorney in her area. Your mother either already has, or will need to, appoint someone to be her durable power of attorney who will be able to make financial and health care decisions when she cannot (the actual duties are spelled out in the document, some DPOAs are written to cover both.) It is imperative she has this done while she is still competent to sign. Once it's done, one person will become the main decision maker. Hopefully you and your sisters will always be able to work together, but it's not a democracy. The DPOA is the one in charge.

You also need to know all about her finances. Will she be able to pay for private care, or a facility if that ever becomes necessary? You always need to be thinking two steps ahead with dementia, but now is the time to gather all that information. 

It's normal to feel overwhelmed at this point, I think we all have been there if we are honest with ourselves. Try to take it one step at a time, I know that has helped me. These forums are invaluable for advice and information, but remember that not everything you see here will happen to you. We are all here to help so don't hesitate to ask questions! Being informed and prepared is a good way to limit that out of control feeling.

SaveFBuelr

smbren & Cynbar - Thank you so much for your replies. Just getting a response on this is very helpful so I really do appreciate it. 

It sounds like communication will be really important here. That's one of the things I worry about is just one person taking the brunt of it all and I don't mean me because my oldest sisters are more involved I would say. Of course I want to do my part.

smbren - Your stories about siblings are spot on lol. I know it will be hard and there will be disagreements and such but I also know I have to keep in mind that it's all what's best for Mom. One of my sisters lives with my mom so the rest of us have sort of been lax with looking after mom, which is terrible. I guess just the unknown of how things are going to change is what's scaring me. 

Cynbar - Thank you for all that info. Actually as I was reading your reply I felt relief because all of that has been taken care of already. One of my sisters has POA and takes care of my moms bills and all finances. We scrambled to do all this when my Dad passed in 2016 because he took care of EVERYTHING. What we really need to figure out now is care for her, getting someone to come in, my sisters and I taking turns to check on her etc. 

It makes me feel a bit better just venting it all out on here. So, thank you.

smbren

Since one of your siblings is living with your mom, the rest of you I encourage to really look to her as the lead.  She will see, hear and know things you won't.  She is going to know things that set her off that that the rest of you won't be aware of.  

She is also going to be exhausted at times.  She is going need help with some things.  And when she asks, the rest of you, if you really want to help, need to work off what her needs are as ultimately it is to help your mother.  If she needs 1 day a month to go to the spa for a 'me day', then the rest of you have to help take up that day.  And a 'me day' is needed, trust me, I do that.  Mine have been reduced to 1/2 me days, but I encourage that time as we all need that mental boost.  And your sister taking the brunt of it, the rest of you can't truly understand what she is living through.  You are all dealing with a very tough situation, but living it 24/7 with your mom's needs is a little bit more.  

Quilting brings calm

Offer your sister time out of the house.   Come visit your mom - -send your sister out to run her own errands or to visit a friend.  Maybe throw in a load of laundry so she doesn’t have to.  Or offer to go get groceries.  Make sure she doesn’t neglect her own health.  So make her schedule her own doctor and dentist appointment. Show up so she can go to them in peace.  Give her a weekend off every few weeks.