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whimsy_1971

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What options are out there when you can no longer care for you PAL? My husband has had a very very difficult few weeks and he is having a very difficult time breathing. He had a feeding tube put in last friday and things have gone down hill since. Im having to suction him every 30 mints or so, to avoid him choking on is own secretions. He is in the hospital now, but will be released monday and the only reason they put him in was to give me a break to get rest.
I have no help except for hospice, and they told me they would just come in and teach me how to take care of my husband and then would check in on me from time to time during the week. I will have someone come in 3 times a week to help me bath him now. But He is afraid to go to sleep and He keeps me up all hours of the night , move me up, down, to the side, pull me down ect...... im exhausted and im just not sure what to do.
 

brooksea

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Raise your voice!

This is not right! You need help from Hospice. If the company you "hired" won't help get a new one!

I hate when I read these posts about Hospice not "really" helping!

Please let us know how you are dealing with this!
 

califsand

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Hi Christy,

The hospital should have a social worker/case manager that is in charge of finding placements for patients who need a higher level of care than can be found at home. When my father was hospitalized they approached me and offered that he could go to a local Hospice house because at the time he had been still living alone. I was scared and opted to move him in with me. He was here for 10 months before I was at your point and then I asked the Hospice Social Worker for help. She got him a room at the Hospice House.

I see that you live in Illinois and found this link that you can check out, although I don't know if it will provide what you need: http://www.thehomecaredirectory.com/hospice_care/illinois

Besides hospice I found a link for the Visiting Nurses in your area, although this is more for if you bring him home and care for him there:
http://www.vnaa.org/vnaa/vna/Noble_Visiting_Nurse_Service___Hospice,MAWEST.aspx

This link may be the best as it provides details on the types of care available in your state and organizations to contact that can help you:
http://www.illinoislegalaid.org/index.cfm?fuseaction=home.dsp_content&contentID=921

You live in a state that has a great deal of programs and options, you should be able to find your husband a safe and caring environment where he can get the level of care he needs. I am surprised that Hospice hasn't tried to get him a bed at a Hospice house or facility when they know how tired you are. Yes they do have the 5 day respite that allows the home caregiver to take a break and that's a great option to have but sometimes using that break really illustrates to the caregiver that they just can't do it anymore. This is why they have the aid in place and in your case, they should be trying to find placement. Have you told them how you feel?

For his anxiety they can give him valium or other anti anxiety meds that don't have serious side effects. We began giving my Dad valium a few months ago and it has helped with the anxiety, making it easier for him to sleep. They should do everything to ease the pain and anxiety for our PALS! Sometimes you have to specifically ask them to but that's okay as long as they get what they need.

Please push for the help you need and let us know how things develop.

Sandy
 

Beebe

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Hi , Have you been in touch with your Local ALS Assoc.? They should be able to help you with all your needs. They were a very big help to my daughter for Jack's needs. Hope you find extra help soon, you need rest or you'll end up sick. My Best to you, Beebe
 

andyvaughn

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Oh Christy, I am so sorry - what is your husbands insurance, do you have private? If so, you may be able to get shift care. Even if it is not a traditional benefit, they can do a benefit substitution. Do you have family that could spend the night a few times a week? I know if I go days on end with no sleep, that I just collapse into a mean, venomuos evil person. :twisted:
These are some of the things I have done to help my husband get comfortable enough to sleep, so that I can sleep. 1 - ativan, baclofen and a pain medication before bed 2. an adjustable bed, our 2 sides adjust independently - if your husband can use a finger he can move the head and feet of the bed up/down. 3. I got a heating pad for our bed, and then just put a light weight down blanket over him, so he doesn't feel like he is being crushed under blankets/quilt. 4. TV, my husband can get himself sitting up, watch tv, lie down when ready with just the push of a button, and go to sleep. Also if he begins to be anxious at night due to difficulty breathing, he can raise himself up without waking me. 5. and finally, EAR PLUGS....ha ha.
Do whatever you can to rest. Can you nap? I try to nap sometimes when Jim does... makes the whole rest of the day better. I do have the luxury of working from home, so it helps. I hope you find a solution that works for you. I would call the ALSA and hospice again, tell them you are coming apart, you can't do it all. Hopefully they can work out a good solution. Also try to remember, if you are like me, when I am tired everything is SO much worse than when I have sleep, my emotions become very large and hard to control.
Andrea - wife of Pals Jim
 

CindyM

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I am sure it is more fearful for him at night. The ativan sounds like a good idea. And CJ is right-you have to speak up, unfortunately.
 

andyvaughn

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One more thought

Christy,
one more thought that might help your husband. You mentioned that he is having difficulty with secretions and needs frequent suctioning. Can you ask his doctor for something to help dry up the secretions? Jim takes a mucinex 2-3 times a day, which helps a lot, but they have prescriptions that are stronger that can help acheive the same thing?
Just a thought
Andrea - wife of Pals Jim
 
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I need help, please

From searching on the Internet, here is one more resource that may be help you.

University of Illinois at Chicago
Department of Neurology
912 S. Wood Street
855N NPI, M/C 796
Chicago, IL 60612-7330
Julie Rowin, M.D.
312-996-4780

Your email was quite unsettling - no one has to go through this alone ! If nothing else they should be able to put you in touch with the appropriate resources in your community and as some else said, any ALS society should be able to help.
 

JACKIEMAX

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My Thoughts On Your Problem

I was just about to go to bed, when something just nagged at me to come to the
forum here. i could not believe your post. i have some of your problems, but not
all of them. the ones i have is that my husband is in a hospital bed which is in'the
den, and i sleep on a couch nearby. i stay in here with him 24/7, and he too, some-
times wears me out wanting to sit up, turn over, watch tv, sleep, on and on,
and it also can be nerve wracking.

he also tries to cough up secretions, but nothing comes up. but the dr. prescribed
a patch to put behind his ear every three days, and another pain patch to put
on his arm every 3 days. i also give him crushed up ativan in his water for his
feeding tube at night and he sleeps all night long.

if he gets irritable during the day, i sometimes give him one then.

as for hospice, they are on duty 24/7, and you 'must' remind them of that and that
you have to have more help than you are getting. if not, a hospice house might
be the answer.

jackiemax
'
 

gagirl

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Christy and all Caregivers - Please remember that if you receive Hospice care, you are the consumer. You are paying for their services. Make sure you get detailed information from them of what they offer and if you need more than what they have or are not happy with their service, there are tons of hospice companies out there so try another one. We went through my husbands ALS doctor to get hospice care and he assured us that if we were not happy to contact his office and they would refer us to another one. As caregivers we are the advocates for our loved ones and we have to at times be aggressive to make sure they get the care they need and deserve.
 

whimsy_1971

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Sandy

Sandy,

Unfortunatly we do not have a hospice house. We live in a rural community in southern Il and we dont have such resource. They did offer to come over on monday to speak to me further about my options. But of course the major issue here is finance, they stated they could set David up in a nursing home or in the hospital where they put the terminally ill and it would cost me 120.00 day for his room and board. How the heck can I afford that! I am so upset right now, because I feel as if Im being forced to care for someone that needs more care than what I can give already and it will just progress to the point of me having a break down.

I cried so hard the other night. I have enough emotional issues that this is really just building (pms tooo big time). The other night I was working with Dave until the point of exhaustion. He was moaning and having a hard time breathing due to the over load of secretions and choking on it. I was up and down with very little sleep for the past several days and I couldnt stand to hear him any longer so I got up and sat on the bathroom floor that we just got remodeled for him that we cant use now, along with the van we just bought, anyway I sat on the floor and was so angry that I squeezed my legs w/ my hangs until my finger nails had dug in and I didnt even know i did it until it was over. Now I have bruses on my legs w/ nail mark. Im loosing it and I have not control over it. Im trying so hard, but I feel as if Im a failure to my husband and family.

Ref to Daves saliva issue they have im on patch that you put behind the ear, but it doesnt seem to help, I will maybe try the musinex too.

Thanks everyone.


Hi Christy,

The hospital should have a social worker/case manager that is in charge of finding placements for patients who need a higher level of care than can be found at home. When my father was hospitalized they approached me and offered that he could go to a local Hospice house because at the time he had been still living alone. I was scared and opted to move him in with me. He was here for 10 months before I was at your point and then I asked the Hospice Social Worker for help. She got him a room at the Hospice House.

I see that you live in Illinois and found this link that you can check out, although I don't know if it will provide what you need: http://www.thehomecaredirectory.com/hospice_care/illinois

Besides hospice I found a link for the Visiting Nurses in your area, although this is more for if you bring him home and care for him there:
http://www.vnaa.org/vnaa/vna/Noble_Visiting_Nurse_Service___Hospice,MAWEST.aspx

This link may be the best as it provides details on the types of care available in your state and organizations to contact that can help you:
http://www.illinoislegalaid.org/index.cfm?fuseaction=home.dsp_content&contentID=921

You live in a state that has a great deal of programs and options, you should be able to find your husband a safe and caring environment where he can get the level of care he needs. I am surprised that Hospice hasn't tried to get him a bed at a Hospice house or facility when they know how tired you are. Yes they do have the 5 day respite that allows the home caregiver to take a break and that's a great option to have but sometimes using that break really illustrates to the caregiver that they just can't do it anymore. This is why they have the aid in place and in your case, they should be trying to find placement. Have you told them how you feel?

For his anxiety they can give him valium or other anti anxiety meds that don't have serious side effects. We began giving my Dad valium a few months ago and it has helped with the anxiety, making it easier for him to sleep. They should do everything to ease the pain and anxiety for our PALS! Sometimes you have to specifically ask them to but that's okay as long as they get what they need.

Please push for the help you need and let us know how things develop.

Sandy
 

whimsy_1971

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Andrea,

Andrea,

oh, you said it. I think Im the queen of the venomous evil people. I hate what this disease has done to me and him. I get so angry and all i hear any more when he needs something is do this, do that ect..................... I think when did I become your servant, or slave and how did I get stuck with this.

Dave can not use his hands any longer along w/ the rest of his body. He cant use anything, and can barley speak.

We do have a hospital bed w/ a specail mattress on it, although he still complains that his bottom hurts. I just had a new low pressure mattress put on the other day in hopes of releaving some of his pain, but it hasnt. Im still turning him every 20 mints its seems.

The other problem is that Dave seem to want to sleep while Im awake all the time, and then when IM ready to go to bed he has me up almost every hr to do this or do that, or ajust him. Gosh I complain to much. Listen to me. I dont even know myself anymore.

Agani thanks to eveyone here. You are more help to me than anyone else has been.


Oh Christy, I am so sorry - what is your husbands insurance, do you have private? If so, you may be able to get shift care. Even if it is not a traditional benefit, they can do a benefit substitution. Do you have family that could spend the night a few times a week? I know if I go days on end with no sleep, that I just collapse into a mean, venomuos evil person. :twisted:
These are some of the things I have done to help my husband get comfortable enough to sleep, so that I can sleep. 1 - ativan, baclofen and a pain medication before bed 2. an adjustable bed, our 2 sides adjust independently - if your husband can use a finger he can move the head and feet of the bed up/down. 3. I got a heating pad for our bed, and then just put a light weight down blanket over him, so he doesn't feel like he is being crushed under blankets/quilt. 4. TV, my husband can get himself sitting up, watch tv, lie down when ready with just the push of a button, and go to sleep. Also if he begins to be anxious at night due to difficulty breathing, he can raise himself up without waking me. 5. and finally, EAR PLUGS....ha ha.
Do whatever you can to rest. Can you nap? I try to nap sometimes when Jim does... makes the whole rest of the day better. I do have the luxury of working from home, so it helps. I hope you find a solution that works for you. I would call the ALSA and hospice again, tell them you are coming apart, you can't do it all. Hopefully they can work out a good solution. Also try to remember, if you are like me, when I am tired everything is SO much worse than when I have sleep, my emotions become very large and hard to control.
Andrea - wife of Pals Jim
 

andyvaughn

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Christy,
You don't compain too much... this is a safe place to vent. All of us caregivers get up against the wall at some point.
Is there anyway to tell him how exhausted you are, to try to get him on your sleep schedule? What about outside help, you have to get some rest, or you will get sick yourself. My husband is probably the greatest guy in the world, he tries very hard to make sure I am okay, but even with his tremendous love and consideration, I get tired too, and I have to ask for help now. This isn't a one person job, by any means. Round up the possee Christy, get people in to help you, maybe someone could do your laundry, another organize having meals delivered, and yet another could organize someone to spend the night a few times a week, and you could get a good solid few hours of sleep.
Please be sure you take care of yourself. I have heard others use this analogy before, but it is like they always tell you on airplanes, when the oxygen mask drops, put yours on BEFORE your kids/spouse etc.. you can't do for them if you can't do for you...your hubby desperately needs you.
I am sorry it is so hard Christy, God knows none of us would choose this... please, please try to get help, so that you can be okay.
Thinking of you
Andrea - wife of Pals Jim
 

MtPockets

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Joined
Jun 1, 2006
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US
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Ms
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Gulfport
Thank You all care givers

As a Pals, I appreciate all my wife is doing for me. The caregivers have a very difficult job, to say the least. I just wanted to thank all of you who are so dedicated to helping your PALS. You are doing a wonderful job. Hang in there.
Due to severe foot drop, I have pain in my ankles at night just from the weight of a sheet against my toes and my foot falling, that keeps me awake all night at times. When I try to get my wife to move me on one side or the other then my knee joints hurt so bad they keep me awake. Whatever position I am put in is where I stay for the night until she helps me move. We have tried the foot drop boots, but they are large and heavy and make repositioning very difficult. You would think someone would come up with something better.
I have lost so much muscle tissue that my hips hurt, especially on the toilet. Like sitting right on the tail bone. This also hurts at night. We have one of the "space age" mattress and an adjustable bed so that helps some. It must be terrible to not be able to speak and have these pains keeping you awake. I do not look forward to that at all.
Thank you again care givers. You are angels..
 

andyvaughn

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CALS
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ca
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You put it all in perspective Al.. thank you. Fatigue is nothing compared to the journey you and other Pals are on, including my husband. ... I am sorry you have so much pain, does medication help? Jim takes a pain medication, baclofen and ativan at night, this little cocktail seems to help him get pretty comfortable.
Andrea - wife of Pals Jim
 
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