Old 03-15-2014, 11:35 AM #1 (permalink)
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Default ALS Patient becoming difficult

I'm new here, & I just posted this info in a thread that I can not find now, so this is my 2nd attempt. SIL spent almost all of Jan & Feb in hospital before receiving ALS diagnosis. First problem we noticed was slurred speech which is now almost 100% not understandable. She falls a lot, has a food tube & is on oxygen. Due to all of immediate family being employed & the fact we all live about 30 miles apart, she was placed in nursing home. The problem we are dealing with is that she calls constantly asking to be taken home. She can't go home as she is already very disabled & the home she used to have isn't available for reasons I can't go into here. We (and her doctors) have gently explained that ALS only gets worse & that none of us can stop working to be with her 24 hours a day. She continues to call & ask someone to help her get out of the nursing home. We just don't know how to deal with her non-acceptance of this new & horrible reality. Have any of you had similar experience & can offer some advice? It is to the point when we visit her at the NH we can't have regular conversations with her because of all the requests to go home. She actually attempted to show us she could walk to the door, but lost balance & fell back into the wheel chair. She just doesn't seem to accept this & we don't know what to do. Thank you.
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Old 03-15-2014, 01:23 PM #2 (permalink)
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Default Re: ALS Patient becoming difficult

She sounds scared and left for dead already.
Imagine that your body is failing,and now every bit of normal in your life is being ripped away.
I would act the same way.
Does she have access to computer/internet/this forum?
Life isn't over because we have ALS, it's just different.
She still wants to contribute,you need to find a way to keep her involved.
good luck
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Old 03-15-2014, 01:40 PM #3 (permalink)
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Default Re: ALS Patient becoming difficult

I am truly sorry you have to figure out these things. All the answers are hard.

Is she getting good care at this NH? Would changing facilities address her concerns? Or does she even have concerns other than wanting to go home?
How is the NH getting paid for?
Is she on bipap or other reason she needs 24x7 continuous care, maybe some dementia? Or would she be okay being alone for a couple hours at a time?
I assume she is single or otherwise on her own before this happened?
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Old 03-15-2014, 01:56 PM #4 (permalink)
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Default Re: ALS Patient becoming difficult

Is there a social worker or something at the home who is experienced with ALS? She needs to be in contact with either the ALS association or MDA ALS division who can help her get what she needs and a therapist to deal with this grieving process. I totally agree with CGARS, life goes on, it's just different.
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Old 03-15-2014, 07:10 PM #5 (permalink)
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Default Re: ALS Patient becoming difficult

This is heartbreaking to hear. I encourage you to research your resources thru ALS Association, MDA and or NH caseworker for further direction and understanding of this disease. Every person diagnosed with ALS deserves to live with dignity on their journey with ALS whether it is short term or long term. FYI, some diagnosed with ALS live 5,10,15,20 and 30 years. Please educate yourself on the disease and resources available. Your sister inlaw deserves a advocate and options.
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Old 03-15-2014, 07:47 PM #6 (permalink)
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Default Re: ALS Patient becoming difficult

You mentioned she was just diagnosed after spending Jan and Feb in the hospital. I can't imagine going into a nursing home with the shock of this new diagnosis just sinking in. The body slowly shuts down but the mind does not. There's also no guarantee how long her journey will be, she may go on for many years. She needs advocates to cheer for her. I agree with all the above, seek some outside resources like the ALS Association, or a social worker who deals with ALS patients. She sounds like she's hanging on for dear life, literally, and I don't blame her.
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Old 03-16-2014, 10:12 AM #7 (permalink)
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Default Re: ALS Patient becoming difficult

I think I may have given the wrong impression. We have met with social workers and medical professionals to arrive at this very hard decision. Two things are important here: she can not manage on her own & we can not give up our jobs. Prognosis is not good. This hard decision did not end our role as caregivers; instead that role has changed. Many of the suggestions we have already done; however, I really appreciate the suggestion regarding a counselor for her. I will look in to that.

Thank you so much for the helpful suggestions. I will not be posting further. I wish everyone well!
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Old 03-16-2014, 02:10 PM #8 (permalink)
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Default Re: ALS Patient becoming difficult

Have you looked into a private CNA to care for her while you guys are working? Some have been surprised to see they can hire private home health help for better care than a NH for less money. Even for 24 hr care. And then depending how her financial status is being single she may qualify for state or county assistance depending on if there are those programs available.
Sorry if that is rehashing ideas you have already discarded.
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Old 03-16-2014, 03:48 PM #9 (permalink)
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Default Re: ALS Patient becoming difficult

I don't know how her financial state is but wondered if she could be placed in a assistant living facility. But, I don't know if they could provide enough help for her. Could you fix her room up really nice for her with family pictures, plants, or anything. Does she have a good tv or anything that could play relaxing music for her. Is there anybody that provides and entertainment there for her. We have a gentlemen in our town that goes around and plays a portable piano at alll the nursing home. Does she have pretty sheets on her bed that could brighten up her room a little. A counselor for her would be great. Does she any friends that could send her cards. A minster who could come pray with her. She has to be extremly lonely and scared. Some places even have pets that come in to visit. You are in my prayers. Kim
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Old 03-17-2014, 12:05 PM #10 (permalink)
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Default Re: ALS Patient becoming difficult

IndyGal, please get her a computer and tell her about us.
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Old 03-20-2014, 04:08 PM #11 (permalink)
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Default Re: ALS Patient becoming difficult

Indy, dont stop posting, you are a good loving SIL to be looking out for her. the PALS here just know how terrified they were with thier diagnosis and your SIL has been hit with even more, lossing eveything in a head spinning rapid time.
as adozi suggested please get her a computer and get her intouch with this forum. I am sure having people who understand what she is going through wil give her strength.

there is also a section for care givers for you here. and BrianD has some very good thoughts worth checking into
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Old 03-20-2014, 06:27 PM #12 (permalink)
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Default Re: ALS Patient becoming difficult

Indy.. besides the suggestions already given, insist her doctor do an FTD evaluation, or put you in touch with a neurologist or psychiatrist who is qualified to do so. If FTD is found, it could be that finding the right combination of psychiatric meds will help your SIL in coping.
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Old 03-21-2014, 07:01 PM #13 (permalink)
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I thank God that I am not left alone, she must be terrified, please get her a computer and put her onto this site, she is in my prayers.
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Old 03-21-2014, 09:53 PM #14 (permalink)
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Default Re: ALS Patient becoming difficult

Hello Stressed.My wife is in the latter stages and I take care of her. She wants to pass away at home and she will.can you make arrangements to have a daytime nurse and you possible take care of her at nite?Also my wife had the PEG procedure and since then with a high carb and high protein diet.She has improved and if you know anything about this terrible disease improvements don't come easy. Something I just learned also if you can get it is called Nistat for the slimy throat. we live in Costa Rica So I don't know if you can get it there.Most important! Give her your Love , not your frustrations.Good Luck.
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Old 03-22-2014, 10:52 AM #15 (permalink)
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Default Re: ALS Patient becoming difficult

Do not beat yourself up. You are doing the best you can. I am in the same situation. We cannot quit working, and help can be unreliable. Those getting care at home usually have a non-working family member or members that can stay with them to offset some of the tremendous costs and burden of long term home care. I know of one family that after 10 years of caring for someone at home told the rest of the family that if they were ever to need long term care to not put themselves through what they just had to go through for the past 10 years. There are just no easy answers with this disease. Some progress slowly and others can manage for quite some time with minimal assistance. My mom is going to assisted living today.
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