Any suggestions?

[Wendy860]

Hello, I have friend who has als. She was diagnosed about 10 months ago. I have just come into the scene a couple of weeks ago. It's a very long story but we were childhood friends, very close from second grade on. When I went away to college we lost touch and now have come back into each others lives. I just found out she has als about two weeks ago. I immediately went online to read about als and was so saddened by what I learned! Next I immediately went to visit her in the hospital, and when she saw me, she cried and wanted to know how I found out. I guess she didn't want me to know. During that same visit some important decisions were being made about her going home and I told her I could go and allow her some privacy w/her husband, but she shook her head, no. So, I felt that even though she may not have wanted me to know initially, she now wants me to be envolved. I want so much to help and support her!! She is basically bed ridden, although, I'm not sure it has to be that way now that she is home. She uses a little box and types in what she wants to say. Today when I was there, she told me, "I want to fight this thing!" I told her I was so happy to hear that and that I wanted to help her in any way that I could. She then said, "Would you help me stretch, research and find out anything and everything?" Of couse I told her, "YES!" I was so happy to hear that from her! I'm not sure if this is the right place to start, but the reason I joined this forum is to ask for suggestions and help from others who might be able to give me some insight to what I can do for her. One of the things I've noticed is that her family is at odds. It feels to me (toatlly my perception) that her husband is isolating her. It's been difficult for me to actually get in to see her now that she is home. Many times, I'm hearing what she needs or wants from him. His perception and words are very different than what she herself told me today. She is on a lot of medication and gets tired and worn out so quickly, it's difficult to have a conversation that lasts any length of time. I sit and try to put myself in her situation and I get so emotional, I know I have NO idea what it feels like to be her, but what I do know is that I want to help her so much...I want to help her...help her enjoy the time she has left...help her believe that she can still fight.....help her spend time with her daughter....help her to know that she doesn't have to just accept 'settling' for what is easiest for others! She has always been such a vibrant, upbeat, beautiful person, full of life....! How can I get her an advocate? One that has HER in their best interests? How can I help to make sure that she is getting the appropriate care and the correct medications? I am only her friend...her mom and dad have been shut out by her husband....I know there are several issues here, and I hope I'm not overstepping any boundaries with this post, but I just need some direction and thought this might be a good place to start. Thank you so much for taking the time and the energy to read all of this! I appreciate any suggestions that anyone has to offer.
Sincerely,
Wendy

[CindyM]

Hello. I give you credit for wantingt to help. Most people wouldn't know what to think fi they found an old friend in the throes of ALS. I think the best thing you can do is help her to enjoy what time she has and help her to enjoy time with her daughter. You already started doing the only other thing I would suggest: learn all you can about this disease. Our search feature is a great beginning. Let us know how this develops! :-D Cindy

[swmn]

Welcome to the forum Wendy. Thank you for caring so much about your friend that you want to help. This forum wil be a great place for you to get other's recommendations. I too, am a friend of a PALS and his wife who is his main CALS. I have been walking this tightrope of a line, doing my best to offer as much help as possible w/o pushing too far!

I have been relatively successful, I think, helping while educating myself as much as I can. You can PM me anytime and we can discuss your involvement in greater detail.

Remember that the husband as a CALS is struggling too. I would also expect there to probably be family issues with the parents also wanting to be involved - let alone any other baggage from the past - (pre ALS relationships within the family). You may benefit from talking with your friend through a chat type set up through google or msn or even this forum. (she too could benefit from all the people within this forum )- I have chatted with other PALS friends from the forum who have helped me make decisions as to what I can do to help my first, and most dear Pals Friend, my friend John. Through these chats I have found some of the most wonderful, strong, helpful PALS & CALS. keep searching the forum and asking questions.... PM me any time

[cukita99]

hi, at first i didnt want anybody 2 visit me or see me this way. but now i feel like i need my friends 2 make me laugh n help pass time. talk 2 her husband n ask him 2 let u help with whatever he needs. that u r there 4 them both. i have a friend that comes 2 strecht my legs onces a week.

[Wendy860]

Thank you Cindy, SWMN and Cukita99 for your replies! I will continue to research and do my best to help her! I will also continue to tell her husband that I am here to help both of them in any way that I can.

I told her that my day off is Mondays and that I could be there every Monday, other times are possible, but she could count on Monday's for sure. If she was tired, I could just sit with her while she slept and I could knit or do the disher, whatever. She liked that and said around noon would be good. When I mentioned this to her husband, he told me that it's hard to take care of her with others around!? I told him, of couse if she told me that she needed me to go, I would do that if that's what she wanted. I in no way want to be a bother to them. As a matter of fact, I'd like to learn how to help take care of her also. Really, I want to do whatever they need while I'm there.

SWMN, I am still trying to figure out how to work this forum. I tried to PM you, but it said I didn't have access...I must be doing something wrong, but will read the FQA and figure it out.

Thanks Again,
Wendy

[swmn]

Hi Wendy - I think you need to click on "private messages"
On the left you willse the control panel - to edit your profile-
you need to enter your current email account and they run PM's through that account.
I hope I'm right on this...
Good luck - hope to hear from you soon

[cukita99]

hi wendy, i wonder why her husband says that. i dont have a husband he left me 4 some one else n had the nerve 2 try n convince my mom 2 put me in a foster care. but my mother said not as long as she is alive. i enjoy my friends conpany n help. he should ask her what she wants. i cant speak walk or use my hands but like i tell people as long as my brain works i make my decissions.

[Al]

Sorry Wendy but until you post a few more posts you won't be able to use some features like the PM . We had to do this because of people joining and dumpig links here. It pays to hang around a while.
AL.

[Wendy860]

Okay, well, I plan on hanging out, so I will continue to post and when I am able will PM you SWMN. Thanks for the information, Al.

Cukita99, I'm not sure why her husband says that. I'm not trying to overstep any boundaries, I just want to help her. I have a question for you, I want her to have access to me while I'm at work. She has a cell phone and someone told me that I can text her from my computer, which would be perfect. That way I can be working on my computer and still communicating with her. I'm looking for a trustworthy and free download to be able to do this, do you know of anything?
Thank you everyone,
Wendy

[Vicki S]

Hi, the problem I have is my husband gets depressed whenever I go to lunch and the movies with my friends. I'm the one with als so why get depressed. I'm going to a painting convention in May and I'll be gone a week. I haven't told him yet. He likes me to depend on him and so don't know how he will respond to me being gone a week.

I told him he was lucky that I have so many friends that are willing to do things with me while I'm not to bad. I've always been a little independent and my sister says he's got me where he wants now---totally dependent him. I guess I'm lucky that he loves me so much and is such a good caregiver.


Vicki

[cukita99]

hi wendy. my son program his n my relatives cell phone on my computer n thats how i comunicate by txt n it doesnt cost anything n u dont have 2 down load. if u want email me at cukita99@aol.com n mayb he can email u how u can do it.

[gdts]

There are many options out there now a days. The easiest is if you already have a Yahoo Messenger or Skype account both have text options which are called SMS if you email me I can give you full instructions with screen shots on how to set it up on her computer. Yahoo you can sign yourself off the computer and into your cell phone so that when anyone comes online and looks it tells them you are signed into SMS and can receive messages. Now if they write you a message you will receive on your phone and reply back to them via text and they will receive the same as if you both were in front of the computer chatting.

Chris

[Wendy860]

Hi Everyone, Thanks again for your replies!

I have downloaded AIM so that I can text my friend while I'm on the computer. We talked and she thinks it might be easier for her to use her box and email or IM me instead of texting...although her box can't access the internet right now because something is broken. When I asked her husband if it could be fixed, he stumbled over the answer. I did get him to call the company while I was there and he said it would take 5 days and she'd be without her "voice" for that long. I thought that was unnessisary, as did she. When I asked this week about the update of her box getting fixed, he said she had to wait until the 22 of Feb. until she can get a loaner while her to use while the box is being fixed. She has been having great difficulty using her box and gets very frustrated! When I aske her a question, everytime she trys to type something in, her husband trys to finish it with the answer, and she gets even more frustrated and shakes her head no!

I understand that her husband is suffering also and I am trying not to get frustrated with her husband myself! When I go to visit her, her husband always tells me it's not a good time! When I ask him when I good time is, he said there really isn't a good time!? This past visit, I told him that the last time I was there, my friend wanted me to come back and wanted to know when I would be back! I promised her I would return on this day! I told him to please tell her that I was here. When he came back he said I could see her but only for a minute! The whole time I was there, my friend was trying to type in something to me, but everytime her husband came up by the head of her bed, she would hit the clear button!? When I would ask a question, he would answer it for her, and she would shake her head no. Then her speech therapist came and her husband told me I had to leave. My friend starting crying, when I said that I wanted to wait until she could tell me what she wanted, he said that she always crys when people leave and it takes to long to find out why, and that I needed to go. I asked to speak with him outside and when we went out of the room, I told him that I only am there to help them both and how much I care for my friend. He then told me that everyone who comes to visit her exhausts her and that I'm using her energy up and she has none left for her children and that's not fair to them. When I questioned him with the fact that she asks me to be there and tells me that she wants me to come, he said that she says that because she doesn't want to hurt my feelings!??? I'm so confused! Could she actually be doing that? I don't want to use up her energy at all! The past few times I've been there, I've helped her stretch and always rub her feet for an hour or so while she relaxes and sleeps! The visit before, I stayed longer than I thought I would because she had things to tell me...should I back off? I have my own opinion, but would appreciate others opinions...if I'm hurting the situation instead of helping it, because that is NOT my intention at all! Another question I have is - she gets a lot of meds! When I asked her if she takes the meds for the pain of the als or the pain in her heart, she said it was for the pain of an injury in her shoulder. Many times she's so 'out of it' I figure it must be from the meds. From what I gather, she's taking a med for anxiety, but also has Tylenol and morfine. I'm not sure but I was told by her step daughter (who is often the one giving her the meds) that the step daughter gives her as much as my friend wants. Someone else told me she gets the morphine 4 times a day...isn't that a lot? When I ask my friend if she knows what she gets, she shrugs her shoulders. I am feeling really....helpless here....
Thanks for listening and reading! I hope someone can offer me so helpful insight!
Wendy

[Al]

Just an opinion but the husband sounds like a control freak who is not coping very well. It does sound like they're doping her up a lot but hopefully somebody (doc/nurse) is keeping count of how much she is using. It's pretty tough to visit if the husband doesn't want you there.
AL.

[Wendy860]

Yes, I think you are correct, Al. And you would think that a doc/nurse is keeping track, however I can't find that info out. I am timid about the questions I ask because I'm not "family" and her husband is doing his best to shut out her mom and brothers, and I feel if I tred lightly than I can still 'get in' to see her. The last time I was there, he would only leave the room for a quick minute, not really allowing us any time to communicate, which struck me as kind of odd. Also there was a note on the door that said anyone coming in to be with her for a 2 or 3 hour length of time would need to attend to all of her needs on their own (examples were dressing, toileting, meds, coughalator, etc) and if someone wasn't able to do that the visit could only be 30 minutes long. When I ask questions, he gets kind of...well, I guess 'huffy' with his answers. There always seems to be an excuse for why something is not being done. Of course I've been in contact with her mom and I get her side of the story also. I have really been working hard at forming my own opinion of what's going on, but so much of it seems so odd! Like why she never gets to get up out of her bed or go outside (especially lately - we live in CT and even though it's winter, we've had some beautiful warm days! Perfect for a wheelchair ride outside for some much needed fresh air!) Or why her own mother can't get in to see her, or why the hospital sent her home with instructions that she is to continue to eat food, but he's only feeding her through her tube? I just wish I could talk to someone that would be straight up with me about what's going on here! I don't even now if she gets any of her text messages on her phone?! The thing that seems the strangest to me is that she doesn't appear to have an advocate...someone who is looking out for her best interest. I guess that's suppose to be her husband, but it certainly doesn't feel like that's what he's doing! Although, I just finished reading a long thread from Delb, and I guess these things do happen and exist out there! It just doesn't make sense to me...she has a terminal illness and I would think that her husband would want to make her time here as wonderful as possible!
Thanks for responding, Al!
Wendy

[olly]

ive read your posts and one to delb today. is there a nurse/doctor who visits her,can her mum make appointment with her doctor. someone needs to disclose these concerns to her doctor or social services. delb has had a hard time but is strong,your friend does not sound strong enough to stand up to her husband or she would not let him push you all out.you do not know what goes on behind closed doors,i think everyone concerned should put themselves out to get this sorted as soon as possible for the health/safety/life of your friend.

[jimercat]

Wendy,

Does the ALSA visit with your friend? Can you find out? If so perhaps you could find out who the rep is and have them visit or maybe they may have a suggestion for you on how to handle the situation. I'm sure they've seen this type of thing before.

How would your friend's husband react to you giving him "the day off" so he could do things for himself - you know- "give him a break" from caring for his wife. IF he went for it then you might get to the bottom of what is troubling your friend. Sounds like she is a prisoner in her own home and he wants to keep it that way. IMHO

Very sad...

Good luck!

[Wendy860]

Hi Olly, she does have some folks coming in. From what I've been able to gather, someone comes in every morning to help get her ready for the day. I think they stay for an hour. I thought someone came at night too, but her mom told me that doesn't happen. I'm not exactly sure who it is that comes in the morning, I mean if it's a nurse, doc, volunteer, etc.? Her mom is working hard to get some help. I think she's at the point where she's going to hire a lawyer for help. Her mom is such a fighter, a strong woman! I'm so glad that my friend has her and that she hasn't given up with all the challenges my friend's husband has thrown at her. Her mom has talked with someone from the hospital and that person confirms that she was suppose to go home this last time to her mom's house, but something changed at the last minute and her mom's not sure what that was. My friend has signed over her power of attorney to her husband and now nothing can happen without his approval, I also think that is getting in the way of her mom meeting with the doc. I thought about trying to just 'happen to show up' when the caretaker is there in the morning, however I'm just not able to get over there during the time that the caretaker is there right now (due to our own family situations that are going on) and my friend had said that she didn't want me to come early in the morning, she wants time to get ready for her day, so I do want to respect that also. I agree with you that she's not strong enough to stand up to her husband. In my opinion I think she wants out, but part of her doesn't want to lose her husband and of course her kids! I think she's decided to 'settle' for what's easiest for him and in the meantime might be realizing that it should be more, but is too druged up and weak to do anything about it....which makes me sad because she deserves so much more!

As for ALSA visiting, I'm not entirely sure who comes in and out right now. Her mom said that as the regular folks who were coming in, start to get too involved with the situation, her husband changes who comes in, to someone new. Her mom said that when she trys to discuss the situation with the new folks, they disagree, and think he is just wonderful with her (which was the part I identified w/when I read Delb's thread). I know that hospice is now becoming involved and I'm hoping this will be a support for her, however, she seems to be alone so much. I mean her husband and step daughter are at the house, and her husband is even in the room a lot because he works from home and she is set up in his office. So he's in the room with her, but not with her, you understand what I mean?

Okay, so my plan is to try and find out exactly who visits her, see if I can talk to her husband and see if I can 'give him a break' - I like that idea. Then try and get to the bottom of this with her. I'm not sure if he'll go for it, but I will certainly try! I must say that I am concerned that I'm not qualified to 'take care of her' for an extended period of time. I certainly am not comfortable giving her any meds, especially because it seems like she gets too much. I have no problem helping her with toileting (actually one of the other times I was there, she had to go, but he was on the phone and didn't come in, so she looked at me w/saddness and asked if I would be willing to help her. Of course I did and told her that I felt honored that she trusted me enough to let me do this for her (I know it was hard for her to ask me to do this). I have no problem learing any of the things that I need to do to assist her in any way that I can while I'm there, I actually want to learn! I just need someone to teach me. I am also going to try texting her more often and maybe I'll hear back from her one of the times, and lastly I've already sent her mom the link to this website and encouraged her to join and get on and start reading and sharing. I think it would be helpful for her to get support that she's doing the right thing! I will also encourage my friend to get on this forum also! Hopefully her box will be up and working sooner than later! Actually, I'm going to bring my laptop the next time I go over and we can go one together!

Okay, I feel a bit better that I have something to start with! Thank you so much for responding! I pray that I can help her get out of this situation and into a better one!
Wendy

[Wendy860]

jimercat, I meant to add your name to my last post. Thanks to you as well!
Wendy

[CindyM]

Hi Wnedy- I know I'm jumping in on this thread a little late but I just had a thought: if her Mom is fighting for her, can you two link up and share thoughts and ideas and maybe come up with a plan? Hubby could be trying to control an uncontrolable situation, or he could have been this way all along but in any case she deserves a sense of freedom. The disease is confining enough without a family member adding to it! JMO, Cindy

[givenin]

Hi Wendy I can only hope you are wrong about your friends husband it does sound strange and one way maybe to contact her Doctor and let him know your concerns. In my situation as a caregiver to my husband it was difficult to deal with the family and friends that would bombard him with visits and cures anytime they wanted to arrive. I was never asked if it would work for me and our girls cause it was all about him, our girls would have to give up their beds every weekend and any plans they had and though the visiters always tried to help it was more work for me and it did tire out my husband allot and we could see how it drained him but he would never say no to any of them. I have fianllly strongly voiced my concern of how it was affecting all of us not just him and that we needed some sembalance of a normal life for the girls and things have setteled down a little.
And remember some medications can alter the way a person see things. Try her Doctor if he is any good he will look into things.

Best of luck

[Al]

Hey CJ. Noticed you got promoted to assistant. Does the pay get better or just the fringe benefits. LOL.
AL.

[Al]

Wendy. I hope you don't mind but I moved your post of your friends passing into our in memorium forum. My condolences to you and her family.
AL.

[jimercat]

LOL Al!

Promotion in title only! As for fringe benefits, they've been "spent" so to speak!;)