First Post

[lghanson53177]

I am a caregiver for my stepmom who was diagnosed with ALS in August 2006. Her symptoms started mainly with speech and swallowing -- she had a stroke 18 months prior to her diagnosis and had lost use of most of her left side so some of the leg/arm symptoms were masked by the stroke. We lost my father 9 years ago in a motorcycle accident -- my stepmom has never really gotten over losing the love of her life and I still have a hard time believing it's been 9 years that he's gone. As an only child, I knew I wanted to do what I could to help Chris -- so I sold my house and moved in with her last month. It's been an adjustment for both of us having to live with another person again! But things are working out pretty well.

My reason for joining this forum is I'm looking for a place to get and share information...I'm feeling very out of my element here. Navigating medicare and what is/isn't covered...medicare part d prescription drug plans. I have help from a neighbor right now who comes to get my mom up, give her breakfast/lunch but there are times during the day when Chris is alone and I worry while I'm at work. I have no idea how to go about finding good home health care, what's covered by medicare if anything. We have a visiting nurse coming in twice a week, physical therapist and occupational therapist are just starting and we're supposed to have a social worker coming in this week also.

Any advice would be greatly appreciated! I'm an IT geek so any good, straightforward online resources would be great -- reading the medicare site is pretty confusing! I've been out to ALSA and MDA for info, they're very helpful. I'm curious what I should be looking for in home health care, what I should be watching for with mom, and I guess help/info from others in this situation.

Thanks in advance!
Leslie

 

[liz]

Welcome

Hi Leslie -

You really go straight to the heart of the matter. That's great! Wish I could help but I'm new to this too. Can't wait to hear those who know weigh in on this one. Your stepmom is one lucky gal to have you in her corner.

Liz

 

[Pearl]

Here is a resource someone posted a link to the other day that I've found very helpful - you might too :

http://www.lesturnerals.org/resourceguide.htm

 

[lghanson53177]

Thanks for the website Pearl -- I'm finding good info there!

The social worker is coming on Monday -- hopefully I'll get some more info from him and some answers. I'll post anything good that I find out after that meeting.

Leslie

 

[CindyM]

Yes, thanks, Pearl. Great website with lots of info. ENough to keep my little mouse clicking for a bit! Thank you again.

 

[Crystal]

Hello this is my first time using this. I hope that I am doing it right.

I am also taking care of my mom. She was diagnosed with ALS in February '06 and moved in with me two days later. We celebrated her 59th b-day in August. Leslie my father also passed away 9 years ago in Oct. Anyway it has become very difficult caring for mom. You can not understand her speech at all, which makes things very frustrating for her. She has a communication device but it is not like really communicating. If you know what I mean. Mom mostly watches TV all day. She still eats if I cut everything up very small but she does choke and cough a lot. (She loves ice cream lately.) She no longer can drink from a cup or a straw, so she uses like a squeeze bottle. I try to convince her to get the PEG but she refuses to at this point. She can kind of walk with the walker but really needs the wheelchair most of the time. I have not been able to work since she moved in. She needs assistance doing mostly everything and it is getting really hard. I also have three children so I fell extremly overwhelmed at times. God bless her, it isn't her fault by any means but it is hard. So today I called Hospice. They were so nice and understanding. They said they could help me a lot with bathing her, social workers and just all kinds of stuff. Any help will be soooo greatly appreciated. They also said they can talk with my kids and help them cope better. I am real excited to talk with them. They will be here tomorrow!
Crystal

 

[Al]

Hi Crystal. I'm glad to see that you will be getting some help. Just knowing where to look and who to ask is a big problem. Is your mom registered with ALSA if you are in the US or the ALS Society if you are in Canada? They can point you in the direction of help and resources. Welcome to the forum. AL.

 

[Crystal]

Thank you so much for responding. We have signed up with the ALS Association and they have been great. They sent us information about ALS in the beginning. We had no idea what ALS was when she was diagnosed. (I wish we still didn't know about it.)
They sent us videos and books as well as, a lot of other information. I just haven't had the time to look into this forum until now and I'm really glad I did. Thank you. Have a wonderful Thanksgiving.
Crystal

 

[onion]

Thanks

Thank you so much for answering Chrystal's question. I am so new to this. The site reccomended by Pearl is a great resource.
Thanks again
onion

 

[lghanson53177]

Crystal, thanks for responding. I hope you had a good Thanksgiving. We had a pretty good day although mom couldn't eat any turkey really...it's getting harder for her to eat anything but soft foods. I talked to her last night about starting to use the PEG for at least some supplemental nutrition and I think I have her convinced that's a good idea. I know how much she enjoys food so that will be an adjustment. I'm having a hard time convincing her that using the wheelchair is not a bad thing and doesn't mean she's giving up. Atlhough the physical therapist is going to work on helping us get a custom wheelchair and mom was excited about that, which is good. Today we have a new speech therapist coming with a communication device...I'm pretty excited about that. I know it's not like real communicating but just being able to understand her will help I think. My mom watches TV all day too. I try to get her to go out on the weekends but she's very reluctant to even go to church. I don't know if she is embarrassed or what but she won't talk to me about it either. It's tough when she won't tell me and she won't consider talking to anyone else either. I think it's bad for her to keep her feelings bottled up like that.

How did it go with the hospice people for you? I hope all went well...and it's important to talk to your kids I'm sure. That must be difficult for you and them. I"m interested to know what they tell you, maybe I should look into that too. Is your mom on Medicare? It's so hard navigating what is covered and what isn't.

Hope all is going well. It's good to have other people in similar situations to talk with -- my friends have been good at listening to me but I feel like all I talk about is my mom and ALS sometimes...I'd rather talk about this with people who are familiar with the situations and can offer advice/assistance.

My prayers are with you and your family,
Leslie

 

[sufernan]

One day at a time

It is great you found this forum, there is lots of very wise people here to help. I care for my husband for 3 years until December 15, almost one year ago. For me it was hard to balanced helping him and taking care of our son who was just a small baby. We did receive lots of help from family, friends and home care. I had to learn to say this is all I can do and allow others to help us. I believe this is difficult for woman to do. I did not wanted anyone taking care of Daniel because I though they will not do it with the love and attention I did. I learn very fast that you allow people to help and now I am very grateful to them all.
Take good care of yourself so you can take care of your mom.
Sunny

 

[Al]

Hi Leslie. Speaking as one who uses a chair on occasion and has just started to use a walker I think I can relate to your mom. When they say handicapped accessible that can mean a lot of things. Handicapped bathrooms are no good because the bars always seem to be on the wrong side and I don't have the strength to pull myself up some days. At home I have my own bathroom and it is convenient. Most people's houses have a few stairs that are almost impossible for me without 2 people pulling me up. You don't want to drink because then you have to pee and it is inconvenient. Some days it is just easier to stay home. Not the best solution but I can relate to your mom. She is probably thinking the same things and doesn't want to be a bother to people. AL.

 

[liz]

Since my diagnosed, I have been seriously scoping out the handicapped accessibility of just about everywhere I go. Besides the public library, I don't see anyplace I think I could get into, through, and out of on my own in a wheelchair. Even there I'd need help reaching high shelves. It looks to me like at some point we will have to depend on someone to come with us wherever we go if we really want access to community resources.

Liz

 

[CindyM]

In anticipation of the day when it will be difficult to go out I am trying to have more folks in. Eventually this will be hard to do unless they bring their own food and refreshments but I one idea I had is to start a book club. And maybe we should try having a poker night once and awhile. I don't play but Lee likes to and a few friends in the house seems like a good idea to me.

What do some of you more experienced folks have to say? Does this seem unrealistic to plan on having folks in as a way of keeping in touch with the outside world?

 

[Al]

I find more and more having folks in is a better idea than going out. It places a bit of a burden on the caregiver but I've found for the most part they like the company too. Asking someone to bring cheese and crackers or a veggie tray is not a big deal to most people. If it's a party most people bring refreshments anyway. AL.