I just NEED my mom!

Tfreedz

My Mom recently was moved into AL and loves it there thankfully. After seeing her everyday for awhile I’ve gotten down to Wed and Sundays which works great for her because she doesn’t want to miss any activities.

Wednesday after my visit with her, my 14 year old son had a cat scan because he’s had a nagging cough the last 3 months and although his lungs have been clear the X-ray showed “something”. After reading the scan our doctor told us to get our son to the hospital ASAP. He was playing basketball at our rec center and felt fine. We were told he had a huge mass 17x19 and 9cm thick in his chest cavity pushing on his airways and narrowing several veins leading to his heart and brain. After removing a lymph node, we found out he has Hodgkin’s lymphoma last night. Fortunately last night they released him from the hospital and this treatable cancer can be treated outpatient.

My mom has always been such a huge emotional support for me, she always had the best advice and listening ear. I want to be able to call her and cry on her shoulder about this and now I can’t and it makes me so, so sad. We will see her Sunday and I’m afraid when I see her I will just break down. I’ve read on here that many say don’t share bad news with PWD and I’ve agreed but how do I keep this from her? My son will be losing his hair from his treatments and I feel like she will notice, even if he is wearing a hat or something. I’m so upset that dementia has taken so much from us and now when I really need her it’s taken that as well. 

On top of that, I’m juggling caring for my brother with Down syndrome while trying to be by my sons side every second. We do have a caregiver coming in to help with my brother but she’s not always available. Emergency respite homes in our area have closed due to the pandemic so that is not an option. His care manager is trying to find resources to help. There is a group home on the horizon but I need to wait until the opening in March and jump through hoops with appointments and paperwork for him. I just don’t have the time to drop everything with our son to take care of all of this!

Sorry for the long post. I just miss the support of my mom and needed to express that. I know many of you have felt the same way and wonder how you deal with it. I have my inlaws and husband but they just aren’t the same as my mom. 

Neverends

Hi Tfreedz,  I feel for you my heart is aching. I'm 62 taking care of my.mom and I do not share any sad news with her for fear of upsetting her then I will suffer more trying to calm her.  Your son is in wonderful  hands and he is going to be ok blessings to that!  The group home for your brother is on the horizon and that will be a big plus for you and your family. Maybe you  and your family can get back to some kind of new normal. This is a hard road you are traveling, lean on you husband  family and the people on this forum.   I'm sending you a BIG MOM HUG!!

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Quilting brings calm

We aren’t Mom( although some of us may be old enough to be), but we are here for you.  I’m glad you have  your mom settled in the AL and already on a visiting schedule.  Can your brothers care manager handle most of the paperwork and hoops for you?  Because I know where it is you want to concentrate your time, presence  and energy.  

I suggest not telling your mom until and unless she notices and even then minimizing it if you can.  I remember how stressed she was when your brother had covid. Telling her is just going to give you another person to try to keep calm and could mess up her acceptance of the AL. That may mean not bringing your son to visit for a few weeks. 

Sometimes it seems to just dump everything on us at once- we are here for you,  

M1

So sorry T, I know you must feel overwhelmed. I’m glad your mom is settled as your son will definitely need your help. It is indeed a treatable cancer but still, not necessarily straightforward.  We will be pulling for you.

harshedbuzz

I'm sorry. 

I can appreciate that you would dearly love to have your mom back as her former self to listen and support you as you navigate this rough patch with your DS.  I can appreciate your decision to spare her this information given that she hasn't the bandwidth to process it. If she does comment on his hair, you can explain that he shaved it off which will likely be true at some point. 

Is there someone you could throw money at to do your brother's paperwork? I belong to a local Parents of Adults with Developmental and Intellectual Disabilities and people there sometime hire social workers and paralegals to do this sort of thing if their child has aged out of their IEP. 

HB

May flowers

I am so sorry for all you are going through right now, and missing being able to talk to your mom about it. I can relate to that a lot. We had a very rough patch a few years back, right after we moved my in laws near us, when my MIL was dx with stage 4 cancer and my son (14 at the time) was dx with epilepsy within a few months of each other - on top of helping my FIL with dementia. Even though his dx was not as serious as cancer, we still had to focus most of  our efforts into making sure he was ok - it is a difficult age to have health issues. I could not burden my MIL with that (she lost a child to epilepsy, my BIL) with her health issues, and my mom passed years ago. My DH and I leaned heavily on each other, but it’s not the same as being able to talk to mom. Big hugs to you.

Tfreedz

Thank you all so much for your kind words and support and the big mom hug from Neverends, I needed that!

I did go see her today with my son, we zoom our religious meeting with her. I thought I would play it by ear whether or not to tell her. I ended up crying through most of the service, blowing my nose, wiping my eyes and my mom had no idea even though she was sitting right next to me. That just confirmed to me that she doesn’t need to know, she just has tunnel vision and has lost the ability to read the room. I figured why hurt her and have her worry like we are just so I could feel some comfort.

Quilting, thank you for reminding me how stressed my mom was with my brother’s covid.

M1, I appreciate the support!

HB, thanks for the suggestion of hiring it out, never thought of that. I did tell his care manager that we are desperate for some kind of assistance because I can’t be in two places at once, hope she comes through.

May, you certainly went through a very rough time, how awful it must have been! Thank you for the hug and sending one right back to you

Again, thank you all for listening and responding!

mommyandme (m&m)

Oh my! Jeesh, sooooo much! I’m so sorry and really hope your son can begin the healing process soon.  Please somehow find the space to do some self care.

Wow, just WOW!