Help for my mother in Dallas Ft. Worth Area

[livelybunch]

This is my first post. My mother is 65 and was diagnosed with ALS and FTD two weeks ago. We knew something was happening with her because little pieces of her were slipping away. The symptoms began in Nov. 2013. It started with upset emotions, moved to losing the ability to speak, then swallow, now her left arm is not working. She has a PEG which helps tremendously. I am an only child and my father is 72 and taking care of her. We have home-health nurses 40 hours a week, but she only wants to be with my dad. She will not leave his side and gets very upset. This is the most difficult thing to watch. I live 2 hours away and go in as much as possible, as I have four children. I'm afraid there will come a time when my dad can't take care of her. We do not know what to do. It seems we do not get much help from doctors and I'm not sure if it's because there is not much we can do or we have not found the right place yet.

I've come to terms with not being able to enjoy the same moments I used to with mom. I just hurt every day. I don't know how to give her the best support. I would love to hear from people how they cope. And if you know of a good place in DFW that my dad could go to for answers/support. Do I get tested?

 

[Nikki J]

So sorry. You might want to browse old threads in the FTD subforum for ideas. What specific issues do you need help with?
FTD/ ALS is tough ; my mom had it. You do not need to worry for yourself unless there is other family history. If that is the case your mom would need testing (blood sample) in order to identify a gene defect

 

[livelybunch]

Thank you for your quick reply.

I think the big question is at some point will my mother need to be moved to a skilled nursing facility? Her symptoms are happening so quickly. And the painful part is that she is aware of everything. She will not let anyone see her besides my children and me--not even my husband. It seems there are no places where if she were to need more care to move her. No one seems to have specialized care for people with ALS and FTD.

 

[Nikki J]

Whether she needs a care facilty will depend on both the course of her disease and your resources. In an accessible home with enough caregivers there is nothing that can not be done at home. The number of ALS specific facilties in the US can be counted on one hand with leftovers. In a general nursing care facility there will be lots of familiarity with dementia and feeding tubes and some with FTD little with ALS though most of the facilties in my area have or recently had PALS
FTD is heartbreaking for all. So sorry

 

[livelybunch]

Thank you for your reply. I think the best place for her to enjoy her life is at home. We do have nurses 40 hours a week, but we might need to increase as the disease progresses. I worry about my dad. I encourage him to leave and take some time for himself, but he just can't seem to do it without the guilt. It's tough. Thank you for understanding. I'm sorry to hear about how ALS FTD has affected your family.

 

[avnl]

What about local hospice programs?

 

[lgelb]

If she doesn't want her husband to leave ever, hospice really isn't going to have a lot to offer in the way of respite.

Lively, I understand what you are saying. Is your dad in good health? Does he know how to leverage the help he is getting to preserve his energy as much as possible? He may want to talk with the most qualified person at whatever agency they use, about strategies for this. If your mom needs to make sure she can speak with him, poss he can lie down/go outside at times in an adjacent bed/recliner in the same room or elsewhere w/ a baby monitor, while she is being helped by the nurse.

My late husband's family had various homes in Tyler, Garrison and Appleby.