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]

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]

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]

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]

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 dx, 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.

[ljtaylor]

Hi Cindy M. Yes It Is A Great Idea To Have Your Friends Come In. I Have Had Als Since 2002 And Stopped Working In 2004. This Was Haerd Because I Loved Working And Being Around People And Doing Volunteer Work For My Fire Co.
This Can Get To Be Lonely When You Are Confined To A Wheelchair And Need To Be Around People Other Than A Spouse. Once A Month Four Friends I Used To Work With Come To My Place Sometimes They Bring Their Dinner With Them.
The Last Time My Husband Made A Pizza For Them. We Call It Girls Night In And Enjoy Each Other. I Can No Longer Do Anything For Myself Now But I Am Blessed To Still Be Able To Talk, Have A Brain And Fingers That Can Type Although Not Like They Used To. It Is Important To Do As Much As You Can To Stay In Touch With The Outside World Through Computers, Phone. Reading And Friends. I Also Have A Discovery I Would Like To Tell People About. I Found On Qvc Frames That You Can Record Messages On. I Plan To Have A Picture Of My Husband And Myself Together And Each Say A Few Messages Of Love To Our Grandchildren. Each Granedchild Will Get One. I Do Not Want Them To Forget Me. Those That Use A Voice Adaption Equipment Could Also Use This Idea.

My Best,
Lois

[lghanson53177]

Hi Al...thanks for the insight into why it may be tough for my mom to want to get out. It's hard to think like the person with ALS rather than the caregiver...I have started to notice handicap accessibility in places but I didn't think about the "if I drink something, then I have to go to the bathroom" scenario...it is hard to get her in/out of the bathroom and she needs help with that. I'm beginning to understand what may be going on internally for her with respect to how much effort it is to go out.

Because of your suggestion, I invited friends over last night for dinner and a movie. We all had a blast! Mom had not met these friends yet and they had her laughing so hard we were all crying! We ended up talking and laughing so much, we totally forgot to watch our movie. It was great. And this morning mom told me we should do that more often...it does wear her out, but the fun we had was worth it.

Thanks much for your suggestions!!

Leslie

[CindyM]

Thanks everybody for the confirmation that having folks in is easier than going out. I like the "girls night in" concept. Might start this one right away!

On the theme of getting out and about, last night yet another family member pointed out that Sam, who we adopted from the animal shelter, seems to have some caretaker instincts in him. I did a search on the internet and found that big helper dogs can pull a wheelchair, if I get to that point, and one owner tells how her dog gets under her and helps push her to her feet when she loses balance. I think I am going to look around for a local trainer. That time I fell in the woods he just kept on going but at the very least he could be trained to stick by my side and call for help if I ask him to. So that's my project for 2007 - find someone who can help me train Sam to be a bit more helpful!

[sufernan]

I wish you the best of luck in training Sam! I love dogs and I think they are wonderful ....

[MtPockets]

A TRAINED dog is a great idea. I remember one time I fell outside and could not get up and my wife was gone for 3 hours. About all my dog could do to help me was lick the rain off my face and lie beside me until my wife came home.
I have a new one now a 1 year old cocker spaniel and anytime I'm in great pain or trouble she comes and lays with me. One day I went to sleep on the couch after taking pain meds and woke up to find her laying on my stomach with all of her favorite play things laying all over me. She was trying to make me feel better by bringing me her favorite toys.

God Bless
Capt. AL

[CindyM]

How cute! And did it work, Captain Al? Last night we watched the dog show on TV for the first time. We don't know much about this stuff but Sam sure did. He kept going up to the screen and pushing his big nose against it. Then he'd come over to us and cock his head, trying to tell us, I guess, that there were other dogs in the room.

[Crystal]

Hello everyone.
I hope everyone had a blessed Thanksgiving. We did make it through with about 30 friends and family over! I can't wait to see how Christmas will be:???:
I just want to say that I think this is an awesome site!! I like reading each of ya'lls stuff. It really helps me. GranpaAl your fireman picture makes me smile. Leslie I hope that everything is going well with you. I am really happy that your mom has decided to get the PEG. My mom refuses to. She can not drink with a cup at all and was only able to drink through a straw. 1 month ago she lost that ability also and has been using like a sports bottle that she gently squeezes. I wish she would agree to the PEG because I am scared she will get dehydrated. Hospice has been EXTREMLY helpful. A little overwhelming we have a lot of people coming and going. But this is only to get started and then it should mellow out somewhat. Instead of standing at the pharmacy for hours Hospice pharmacy comes straight to our door. They have delivered very needed equipment, the nurse has come out, social worker and even the Doctor makes house calls. How fabulous! Also Leslie I was on the phone for many many hours with Medicare, social security, medicaid etc. etc. etc. Lots of luck to you. Hospice does take care of all medicare issues. There is a separate state hospice medicare funding. Gotta go I have a sick baby tonight too and she is crying. I look forward to talking with all of you soon.
Crystal

[hboyajian]

Crystal, is your mom able to eat blended food? My dad can no longer swallow plain liquids or eat solid food. Everything has to be a certain consistency and he eats little bits at a time with a spoon. He puts a powder call 'thick-it' into his juice so he can drink it. He has also started adding Ensure to smoothies and blended breakfast cereal. It takes an hour and a half for one meal, but he did gain 2 pounds in the last month. He didn't want a PEG tube at first, but he has changed his mind now. He is tired of eating all day long a half teaspoon at a time.