Friend with ALS improved and now making life miserable for everyone!

[hunpy66]

HELP! I have a friend who was diagnosed with ALS 2 years ago. It has progressed rapidly. She is in a motorized wheelchair, on a bipap machine, unable to feed or care for herself, she is able to communicate mainly by writing. Two weeks ago she was taken to a Hospice Care Center to give the family respite. At that time she wasn't happy about being there, though she tolerated it. Her husband stayed the first night and I stayed with her the second night. All was fine until after I left that morning. The nurse couldn't figure out how to put her bipap mask on after dispensing her meds, which she needs, she got very upset (I would too if I couldn't breathe). She was unable to communicate effectively, and thus things just spun out of control. Unfortunately, she demanded to leave, was swearing at her husband the nurse and us as friends. It was ugly. We tried to communicate with her that it must have been an awful experience. She hated us and demanded to be taken home. Unfortunately, going home wasn't an option given her behavior. Also, it was not safe considering that she only receives 6 hours of care a day from her insurance and paying out of pocket for aides to come was getting too costly, not to mention that her husband was up several times night with her and then attempting to work and help the teenage kids deal with everything going on. She is very manipulative and has been for years prior to the diagnosed. She is very negative and no one wants to be with her.

We thought we were loosing her last week and felt that we needed to get her home to die. She wasn't eating, was having great difficulty swallowing water and just not doing well. Kept telling us she was losing precious time at home with her kids, though a great deal of the time she is verbally abusive to the kids and makes them feel guilty. Her dying wish was to die at home. We worked out a plan and got her home last week...suddenly within a couple of days she is eating 3 meals a day? She couldn't swallow water 2 days earlier? Yesterday I witnessed her eating an entire bowl of bowtie pasta with sauce and drinking a soda. The pasta was not pureed! She had her bipap mask off for at least 20 minutes. We are all amazed! The problem is that she is continuing to manipulate her kids, saying things like, "thanks for stopping by, or I no longer consider you my daughter". She says her husband is abusing her, though none of us, including her children have witnessed any of this. Though I have witnessed her verbally abuse her family.

We need help. Her friends are starting to not want to visit her because of her negativity. We want her to enjoy what time she has left with her family, her kids just want to love on her, her husband wants to do the same, though she is making this nearly impossible. It appears as though she decided not to eat while in Hospice unit and now that we got her home she is eating 3 square meals a day! Almost as if to say...I got what I wanted, I am home! Don't think that I am an awful person, we are just at a loss of how to handle things. She is getting up 10 to 12 times a night and then her husband has to attempt to work. We are worried that these kids are going to have no parents if this pace continues. Any advice anyone can provide would be greatly appreciated. We feel she would receive better care in a Hospice Care Ctr., though she is opposed to leaving her home at all. Which would mean that the family would have to make the decision. ARGHHHHH! Thanks so much for your guidance. I have found it very helpful to read the existing entries. Blessings to each of you.

Hunpy66

 

[joelc]

Sorry this is happening to her family and friends! There is no excuse for this type of behavior. The only thing I can think to recommend is to get her some medication. The problem could be exaggerated by Emotional Lability and drugs like Citalopram can help significantly.

 

[tdamess]

oh my i dont know but someone will be along soon with some suggestions but, maybe another thing is she is scared also and dont know how to handle it

 

[hunpy66]

I agree she is scared. We have talked about it. This controlling behavior was in existence prior to the diagnosis. I can't help but wonder what mental illness she has and how can we treat it to allow her family to be at peace with her and try and enjoy what time she has left. They love her dearly, though she continues to push them away. Very frustrating. Her husband is going to end up in the hospital if things don't change soon. Thanks for giving me a safe place to vent and try and figure out some ideas on how to deal with all of this. Blessings. Lisa

 

[pamnandy]

Hunpy66, what a good friend you are to stand by her and her family during such an awful time! Is she still on Hospice out of her home? Once approved, it is my understanding that there are numerous resources available to help the family. In my personal situatation, when Andy was needing more and more care, Hospice was responsible for bringing more people into the house to help give me a break. Additionally, the social worker would make numerous visits to check on me and my PALS teens. I'm concerned for the teen children of your PALS. They will need some counseling if they don't get it already. Additionally, she needs to be put on more sedatives at night if she has her husband up that many times. He is a saint for putting up with that, but I bet he also can't think a thought from lack of sleep and living in such a stressful environment. It sounds like she is a very manipulative person and this disease has brought out the worst in her. It's not fair of her to make everyone else feel rotten around her. Is she still willing to see the ALS doctor and staff? She herself can't be feeling good about all this. If she is willing, there are medicines on the market that can help make her feel better. You might have to put it that way to her. As opposed to saying look, you're making us all miserable, you might have to really zero in on how she feels, and feed that ego centric side of her, just to talk her into trying the meds that a doctor might recommend. Keep in touch and let your friends know that I am praying for them. Blessings -Pam

 

[hunpy66]

Pam, Thanks for your encouragement. This is a site that I need to link her spouse to! He could really benefit from some other support right now...he is a Saint. He has done so much for her and she continues to say she is abused by him. All because he doesn't understand what she is writing or what exactly he needs to do. I will keep you posted. I really appreciate your ideas. The services he receives are limited and he is only eligible through the in-home Hospice care to receive 6 paid hours a day! That to me is unbelievable. He is trying to pay out of pocket for some additional care, though it is stressing the financial household as well. I almost wonder if they should switch agencies. I asked if he had a Caseworker and he said she is useless. I am hoping to meet with him one on one over the weekend to try and talk to him about some different options. Any suggestions you can make other than the ones listed would be greatly appreciated.

Also, I am still trying to learn how to use this system. Very confusing how to post a new thread or locate my note to see if there are replies. Thanks again. Your husband is smiling down on you for all that you are offering to the ALS community. Thanks again.

 

[Wynn]

First of all, I don't think she qualifies for hospice care. Second, I think she should receive some psychiatric meds--she was this way before the diagnosed. Has she seen a psychiratrist? I'm not a doctor, but I did stay in a Holiday Inn Express last night.

 

[tdamess]

i did the same thing i posted one when i first came here and now i can not figure it out again hopefully some one will tell us again, i was feeling stupid but, now i am not alone on this one ,it must be because we are so upset when we get here we follow what they say to do and after we calm down we cant remember oh i am so glad i am not alone on this one lol

 

[pamnandy]

Learning to navigate this forum can be a bit much. I have found to click on "User CP" in the upper left corner. This will take you to any threads you have written on. Use the search bar to type in a specific topic. Additionally, regarding the hours of care they can get: The ALS association has hours available as well, called "respite" hours. I believe that even though Hospice is aboard, the ALSA can stil provide services. I would recommend he call the ALSA ASAP!

 

[BarryG]

To make a new thread just go to whatever sub-forum you think is applicable for your topic and click on "New Thread" at the top. Give your new thread a title and ask your question.

I find that the easiest way for me to keep current is to click on "New Posts". This will show you all of the threads that have been posted to since you last read. So if you know the title of the thread that you are interested in (one that you made for example) then new posts will show you if someone has replied. It may be a little daunting to see all of the threads with new posts listed at first but once you have read or even just opened them the list will be a lot smaller.