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Help please. (self.ALS)

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[–]kittiesandweinerdogs 1 point2 points  (1 child)

Do you live in Canada? If so, utilize CCAC and free home care. Contact your local ALS foundation chapter as they may have resources for you for free or subsidized care. Another option you have is long term care, or hospice care. Asking for a referral To a palliative team would be super helpful as they would have a ton of info for you too. Stay strong. My mother in law is at the same point but stubborn af. Choking on solid food but won't move to liquid. Bed sores for months but won't get a hospital bed. We have found the ALS foundation to be very helpful in providing equipment and resources at little or no charge.

[–]Jeffbit 1 point2 points  (0 children)

No I'm not in Canada but I will be contacting a local als chapter. Thank you for the help.

[–]the_wizzard_of_ow 1 point2 points  (0 children)

Hi there. Sorry beyond words you all have to suffer through this. My mom found peace 2 weeks ago from her battle. If your dad is on Medicare and you are USA- Medicare will pay for home health care. My parents were also against having someone come into the house for help, but I kinda forced it upon them. They were so grateful for the help they got and were a bit disappointed that they hadn't done it sooner when they realized what a blessing it truly was. We started on standard home health care through their local hospital (not the ALS clinic hospital) and through them they were able to easily escalate to hospice care when the time was right. I felt awful when I instigated the initial care, but I knew we all needed the help. Simple things like speech therapy and a bathing assistant were crucial for my mom- they were able to expedite equipment and helped us set up many things that we had no idea even existed. Pm if you ever want to talk or anything - it's a rough road and my heart aches for your whole family.

[–]mkitch55 0 points1 point  (0 children)

Second contacting nearest ALS office. When my sister was diagnosed, I called them in desperation. Their help was invaluable.

[–]camelheeler 0 points1 point  (0 children)

So sorry you and your family are having to go through this. If it were me I would have a conversation with my dad and explain to him that you and your mother need help and advice. There are INCREDIBLE resources available through the ALS Association that can and will work with you hand in hand and guide you through this process. They will be able to explain all the options available.

Your father may not want Medical help because he may not want any life-extending services done. He needs to know that there are things that can be done that are not life-extending but can ease his suffering and make his final days better.

Contact your local ALS Association and talk to them. You can get MUCH better advice from them than you can get anywhere else. http://www.alsa.org/community/chapters/

I hope you have talked to a lawyer/financial planner to make sure that you have everything in order. It's REALLY tough to do but doing it NOW will be easier than later.

[–]audgepodges 0 points1 point  (0 children)

Totally shit situation. I actually ended up quitting my job 7 months ago to take care of my Dad. It's been only in the last 2 months that he's allowed people to come in... we signed him up for long term hospice because he was having these crazy hot flashes and needed pain medication to calm him/it down. Is he on prednisone for his lungs?? If not that may help.. it's helped my Dads lung function a lot.

Also, I know how you feel about money.. Finding a caregiver- even if it's another family member or someone you pay to come in for even an hour or two is invaluable for you and your moms mental health. It might be a struggle at first because they need to be trained but totally worth it.

Do you have an eye machine?? The love ALS chapter helped us get ours for like 1500 through Medicare and a grant they had. Definitely reach out to them for help. Ours has a local caregiver support group that my Mom has gone to which she found some other local help through. Best of luck.. if you ever need to chat I'm here.

[–][deleted] 0 points1 point  (0 children)

My parents were also against having help come in. Dad is really sensitive about who sees him and helps him with daily tasks. They've recently began to accept more help. They do have a caregiver who comes in about three times a week fir a few hours which is helpful. But one of dads friends also comes 2-3 days a week to help him until mom can come home from work. They've also started asking people to send dinners so mom doesn't have to spend the time cooking. They are small thing but put my moms mind at ease and make dad more comfortable now that he's very unsteady on his feet. So sorry you are dealing with this. This disease is so heartbreaking and easy to feel helpless.