Talking points for encouraging a plan but in denial

[alibaka]

My FIL was diagnosed with Bulbous ALS almost 2 years ago. My in-laws moved closer to us (from our of state) for support this past October. But I am worried because they seem in denial about his diagnosis. They do not have a heath care directive (doc and nurses have reminded them), no POA (I've contacted an attorney and provided info to them), won't join any ALS support groups or community (my MIL brushes off the social worker and says we don't need that) and have no plans for the financial impact his care will have (he has VA benefits and they believe all his care is taken care of). We have offered to help with finances, with cooking, with developing a plan and they brush us off. My FIL seems to be declining mentally but progressing slowly physically. And my MIL is very codependent on my FIL, and she is not prepared to be a caregiver. My FIL was the rock of the family and idolized by my husband and his brother. But now he is just a shell of who he was.

My husband and his brother are sitting down with their parents tomorrow to try and put everything on the table. Does anyone have a suggestions on how to break through to them? Or similar experience with being a family member/ caregiver to parents who seem in denial? Talking points, VA experiences, mental decline with ALS, etc. I'm trying to put together things to address to help with guiding the conversation.

My fear is as he progresses, we will be expected to take care of all the things they did not plan for (they moved here for our support). And we are not in a financial position to pay for his care or be his caregiver. I realize there is only so much we can do if they aren't willing to meet us halfway. But I also would like to try as many different approaches as we can before we stop trying. Any suggestions, wisdom it guidance is welcomed.

Thank you for reading and commenting if this resonates with you.

 

[rmt]

I'm so sorry your family is going through this.

My husband was a veteran, so I have experience with the VA side of things. And my husband had FTD, so I have experience with mental decline too.

The VA will provide a LOT of support, both financially and medically. Make sure your FIL is considered 100% service connected disability and that they are working with your local Paralyzed Veterans of America (PVA). The PVA will help with all the paperwork for getting what they need. Your MIL can get a monthly stipend from the VA if she is the primary caregiver. The VA will provide respite care, all sorts of helpful tools and devices to make things easier for you FIL, PT and OT, etc.. Make sure they know to be assertive in asking for what they need from the VA. I never had any issues with the VA providing things. If you have any questions about the VA resources, please reach out to me, I'm happy to help in any way I can.

As for mental decline, it could be FTD, which happens with some ALS patients. I think the FTD was harder to deal with than the ALS part. Try to get them to figure out your FIL desires for end of life and burial now while he is still able to make those choices. There is no way to really prepare emotionally for the changes ahead, but if you have the big questions answered, it helps when things get really hard.

 

[alibaka]

Thank you so much for the information. I'm so glad to connect with someone who has experience with the VA. This is really very helpful. My FIL retired from the Guards and is fully retired with disability. Is all good in home care taken care of? My MIL has many health issues and isn't able to take care of him. They are insisting that all his needs will be covered. I know that most of the medical equipment is covered. But we are trying to figure out how too pay for his care once his needs increase. They aren't worried about how to pay for those things. We are working to get a couple of grants for them through the VA. But just not sure how much is covered. If you have any experience with this, I would love for you to speak to it.

Thank you so much!

 

[rmt]

If you search for "Program of Comprehensive Assistance for Family Caregivers" you should find lots of information. The caregiver has to be a family member and living with the veteran. If you meet the criteria, there is a stipend plus other benefits.

There are also other in home care options that the VA will pay for. If you search for "VA in home care services" you will see some options.

And I highly recommend connecting with your local Paralyzed Veterans of America. They know all the benefits you may be eligible for. They are the ones who told me about the caregiver stipend (the VA hadn't mentioned it). And they helped get us set up with PT and OT (which gave us lots of free equipment and supplies).

After my husband got a feeding tube, the VA provided all of his liquid food. So if you get to that point, it is a huge expense you don't have to worry about.