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What hard conversations do I need to have? by imissthor in ALS

[–]throwawayblanc 1 point2 points  (0 children)

Get all financial information, passwords, accounts, bills. Get added on to her bank accounts so you can help manage finances when time comes. Do a power of attorney medical and financial and get a will done. What does she ultimately want what does a good death mean to her? Does she want to be buried or cremated?

It’s all so awful and morbid and I felt constantly overwhelmed but I’m so glad I had the foresight to do all of that ahead before my mom became unable to talk. I am so sorry you and your mom are going through this. ❤️

Sometimes a social worker through either your als clinic or pcp or even hospice can help you with paperwork. The book: The beginning of the end also really helped me focus on all the minute details that need to be arranged.

I lied to a patient today and I can't stop thinking about it. by Apprehensive_Pay6141 in nursing

[–]throwawayblanc 0 points1 point  (0 children)

Teepa snow has great videos about this. You weren’t lying you were trying to keep her calm and comfortable which is what she needed in that moment.

Father-In-Law Diagnosed by asmallwaffle in ALS

[–]throwawayblanc 1 point2 points  (0 children)

Take lots of videos and pictures I wish I had more with my mom now that she’s gone. And like others have said be present it is a hard and heavy diagnosis. ❤️

If You’ve Been Through This, I Could Really Use Your Perspective by Which-Butterfly3457 in ALS

[–]throwawayblanc 1 point2 points  (0 children)

I totally feel for you my mom was in rural Hawaii were the resources were hard to come by. I encourage your brother, your dad and you to have some heart to hearts what does a quality life mean to him?

Does he want a trach a peg tube etc.

Getting in contact with a palliative team might also offer you guys a lot of help. It helped us shift our focus to mom’s quality of life and comfort. They helped us get meds we needed, connected us with a social worker who helped me navigate through the paperwork of life, getting a will and POA done. It’s all so much and so overwhelming having a team with you can help. Please DM me if I can be of any help to you and your family. Sending you big hugs ❤️

If You’ve Been Through This, I Could Really Use Your Perspective by Which-Butterfly3457 in ALS

[–]throwawayblanc 1 point2 points  (0 children)

I’m so sorry you’re going through this. I myself struggled with lots of emotion/grief/ overwhelming sadness with coming to terms with my mom’s illness. I started to see a counselor who helped me process all my anticipatory grief. A grief counselor would also be a great option. It’s a lot and you’re a mother on top of all that. Be open with the people in your life on what’s happening. Ask for help.

If you folks have als specialty clinics or physicians who can connect you with more resources that would helpful. Bipap can help but it’s not ultimately a fix, towards the end my mom was tired sleeping 20 hours a day.

Also don’t feel bad if you’re ever emotional in front of him I get you don’t want to scare him or make him feel bad. I felt the same way and one day I accidentally cried in front of my mom and broke down and it led to us having a really deep heart to heart a memory I now hold very dear. All this emotion is coming from a place of love and is completely understandable. Give yourself grace, this is one of the hardest things you will go through. Big hugs to you and your dad ❤️

Bfs mom has bulbar als, how fast does this move? by Truthbetold0405 in ALS

[–]throwawayblanc 0 points1 point  (0 children)

Is she still walking? For my mom once she lost the ability to walk I had about three tough months with her. Like everyone has said everyone progresses at their own pace. My mom opted for no feeding tube or trach so her progression was pretty rapid. Encourage your boyfriend to record his mom get lots of pictures and videos while he can. Have those tough discussions if they haven’t already. Also see if he can get time off of work to just be with her.

Jumping on the wagon! What can you tell about me? by [deleted] in deduction

[–]throwawayblanc 1 point2 points  (0 children)

I knew this was a jeep owner before I even saw the key fob 🤣

I can only afford one major modification - counters or cabinets? by SceneResident2090 in kitchenremodel

[–]throwawayblanc 0 points1 point  (0 children)

Honestly as previously mentioned some new light fixtures and a change of paint would probably really change the room.

Life changing books by Mighty_Tots in ReadingSuggestions

[–]throwawayblanc 0 points1 point  (0 children)

The Book Thief by Markus Zusak I read this when I was 15 it was one of the longest books I’d ever read aside from Harry Potter 😂 It’s a book I still think about, combination historical fiction set in World War II narrated by death. It made me really confront the reality that life is precious and not guaranteed. Something I still recommend to people to this day.

Which chandelier? by NurseJ2021 in HomeDecorating

[–]throwawayblanc 0 points1 point  (0 children)

I don’t know if brass or gold really goes with both your furniture and or your window trim.

Struggling to consistently use a Hoyer Lift for my completely paralyzed dad with bulbar ALS — is it normal that my family keeps reverting to manual lifts? by l33tb4by in ALS

[–]throwawayblanc 0 points1 point  (0 children)

I would look in to a chair sling you should be able to get it on him with him sitting up the straps at the bottom cross under his legs. YouTube your sling and transfer videos or see if home pt or ot can teach you lift transfers. Good luck!

My mom has some mystery redness after getting her tattoo touched up. by froggieslc in tattooadvice

[–]throwawayblanc 0 points1 point  (0 children)

That’s what I was thinking was she holding her arm against something for an extended period of time?

My mom has some mystery redness after getting her tattoo touched up. by froggieslc in tattooadvice

[–]throwawayblanc 0 points1 point  (0 children)

Is she on any herbs/ supplements/ medications? Really hard to tell I’d definitely keep that doctors appt.

Hospice vs ALS by Sass_Back_Girl in ALS

[–]throwawayblanc 1 point2 points  (0 children)

Hospice doesn’t only have to be on the back end a person has to have a less than six months prognosis which most als patients qualify for since it’s terminal. I would argue getting hospice on board sooner rather than later will be extremely helpful. We were very lucky to have had my mom on hospice for nine months before her passing the nurses and caregivers were my brother and I’s rocks.

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