New Diagnosis

[jessiseppathompson]

New friends,

My name is Jessi and my mother in law, Eileen, was just diagnosed with ALS about 3 weeks ago. She is a 2 time breast cancer survivor so they are unsure of whether or not her ALS is related to the radiation she underwent as a part of her cancer treatment or not. She lost total use of her left arm/hand/shoulder due to nerve damage of her brachial plexus from radiation and we didn't know what was happening when her other hand/arm started to become weak about a year ago as she was radiated on the other side. She just received her diagnosis and although we're not "surprised" in the sense that we obviously knew something was very wrong, we are devastated and overwhelmed.

My MIL is/was the caregiver for my FIL who is in his late 80s, using a walker, falling regularly... and so now, we are having to make arrangements to get care set up so that they can both be safe and have the best life quality possible in this next stage.

Things have progressed rapidly in the last 5-6 months so that basic self-care like dressing, cooking, and eating is difficult, time intensive, and sometimes impossible to do independently. We are hoping that the steep slope of her disease progression will slow some with being on meds now, but we are also trying to be smart and prepare for what's to come.

We are overwhelmed. Right now it is just my husband and myself (and their neighbors) trying to fill in the gaps for their care and this upcoming transition to move. We live across town from them, so each trip is at least an hour of drive time which is tough to manage throughout the week with our own children and both of us working 2 jobs. We have hired them housecleaning service as well as lawn service so that at least we can keep their home clean and kept up as we have noticed a significant decline (totally understandable).

My biggest questions have to do with looking at this road ahead and being floored by all there is to do. I would be so grateful for recommendations of where to start and especially any prioritization of where to put our efforts and when.

I've read through some of the strands here and am encouraged by the supportive comments and the knowledge which folks seem to selflessly share. Thank you in advance for your time, shared experience and input.

Kind regards,
Jessi Thompson
Spokane, WA

 

[lgelb]

Hi, Jessi, we are happy to help however we can. Very sorry to hear about your MIL and of course you are right that your FIL's care is very much a part of this.

May I ask what their/your resources are relative to their care? Would they be eligible for Medicaid in addition to Medicare? Are there funds for private in-home care? Is their home wheelchair-accessible or could it be made so? I take it neither is a veteran?

Again, very sorry to welcome you here.

Best,
Laurie

 

[KimT]

Hi Jessi,

Unfortunately, one of the first things to do is assess their finances. Make sure you have a list of all their assets, any debts, their monthly income, their current monthly expenses, Wills, and any other legal documents. They need to name a Power of Attorney and medical surrogate ASAP. This will involve you and your husband sitting down with them and discussing their wishes and their financial means.

Once that is done, you can come up with a care giving plan that is within their budget. The value of their home and the availability of remodeling or finding a place that is more suitable will come into play.

If any of their neighbors wish to help, please let them. Cooking meals, checking in frequently, and other challenges during this transitional period is something their friends and neighbors can do to help them out.

When you have the sit down talk, listen carefully to their wishes. It's important for them to know they still have some control in their lives.

How old is your MIL? How old are your kids?

Please feel free to ask any question you need answered.

I'm so sorry for this diagnosis, but your MIL is very fortunate to have you seeking information to help.