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Texans 2014

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Joined
Sep 2, 2014
Messages
9
Reason
CALS
Diagnosis
09/2011
Country
US
State
TX
City
ARLINGTON
Every day seems more like "Ground Hogs Day". My son and I have been caring for our PALS since September 2011.

The first few years were not bad. He still could talk, walk, and eat. As the disease progressed, he decided on a feeding peg tube and much later, a ventilator. He is paralyzed completely from his neck down. Our son and I are not able to work out of the house. We do everything for him as I know he would do the same for me. He gets a nurse for about 20 minutes a week just to check on him and OT and PT twice a week, most of the time.

He has been in this state for 4-5 years now. We can't afford a VAN and we can't afford any RESPITE care. We even had an organization offer to pay for about 30 hours RESPITE care over 3 months. They required that the care would be from an licensed/insured company, who was certified in at home VENT care. We have not been able to find anyone in the DFW area. Can you believe that?

My PALS doesn't sleep well at night but takes cat naps almost all day long. My son and I have to have to stagger our sleeping and we do not even come close to getting enough. I finally talked my son into going back to college to finish his last year. One semester down, one to go. We have friends and family that call occasionally which we appreciate but we receive no help.

I have been married for 34 years and I signed up for this. I love him. My son, however, has given up his life for the last 5 years and it is breaking my heart. He is 28 years old and all of his friends are married, with children, or are getting married soon. Sometimes we feel like unpaid servants and it can be frustrating.

My PALS has a TOBI Dynovox (given by the State of TX-Grant) which we are thankful for. He gives us commands and orders all day, between his short naps, and all night sometimes up to 30 times a night. We understand that he is uncomfortable and can't do for himself but it can be overwhelming to us. We finally had to let him know that we would appreciate an occasional please or thank you. That did help some and he also explained to us that it is difficult sometimes for him to focus on the TOBI because his eyes are tired so he takes the shortcuts of short commands. We get that and at least we aren't arguing but we still are stressed and exhausted.

I know that this is happening for most everyone who is caring for someone with this horrible disease but I needed to Rant as well. I do not know what comes next or how long he will be with us, but I do pray to GOD that he gives us patience, compassion, and strength to continue to care for our PALS. I feel like I can be short with my PALS sometimes and it makes me feel like an Axx. I have nothing else to say other than I am glad that there is somewhere to express my feelings and not be judged. I do feel a little better.
 
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ShiftKicker

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Joined
Mar 16, 2015
Messages
3,013
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
Texans- I am so sorry you are struggling. I am sure some CALS will chime in here with some advice or just plain sympathy. It's a hard path for you and your son to travel on your own. It's clear you care very deeply for your husband but need a little care for yourself too.
 

wishmobbing

Senior member
Joined
Dec 5, 2017
Messages
729
Reason
Lost a loved one
Diagnosis
07/2017
Country
DE
State
Germany
City
Stuttgart
You got more than enough reason to rant and vent. I don't have proper advice, because I don't know the American system, so just saying "Get all the help you can get!" seems a bit ignorant to me.
You have all my sympathy, this is too much for one or even two persons, especially if you never get a whole night's sleep.
I'm wishing you lots of strength. Please come here often to share!
 

pittsburghgal

Senior member
Joined
Jan 7, 2016
Messages
542
Reason
Lost a loved one
Diagnosis
11/2011
Country
US
State
PA
City
Pittsburgh
Texans-- I want to welcome you and assure you that we CALS really, truly understand what you are going through and never judge. Feel free to come here and rant whenever you need to-- it really does help.

My husband was first diagnosed 11/2011, although he had symptoms of weakness in his hands as far back as 2007. He has a PEG and a trach but is not on a ventilator. He only has very limited ability to stand for a few seconds with no use of his arms or hands. Speech is getting very poor. I am the sole caregiver and we also have no ability to transport him by van. I feel very isolated and my entire life seems to be caring for my husband.

I also pray for patience and strength to continue to care for him. I get upset with myself when I am short with him but we really are doing the best that we can in a nearly impossible situation.

My PALS was waking me up frequently during the night and one day I sat down, held his hand and calmly explained to him that I could not care for him adequately the next day if I got no sleep during the night. I asked him to try to prioritize his needs and ask himself if something was important or urgent enough to wake me up and he has done that. Now, I don't know if your husband requires more attention at night since he is on a vent, but it might be worthwhile to discuss this with him, assuming he does not have FTD.

Are you affiliated with any church that you could contact and request some volunteer help? I know this is difficult since your husband is on a ventilator but perhaps you could train a volunteer so that you could get a short respite.

I know that I can't provide many answers for your tough situation but I just want you to know I get it and am sending you a virtual hug.

Sharon
 

Nuts

Forum Supporter
Extremely helpful member
Joined
Feb 23, 2014
Messages
2,540
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
NC
City
Littleton
Welcome, Texans. It does help to vent, especially to people who understand. I cannot imagine doing this with no help other than your son, and seeing him give up these years of his life.

You are wise to have had that conversation with your husband. I also find myself responding to request after request, and I now that it must be miserable to have to ask, but sometimes I do tell him that after the next thing I need a few moments for myself. Someone once said that we teach people how to treat us, and you demonstrate that very well.

My husband has an elegize on order, and I've already explained that when he starts saving messages, a person with please and thank you would be nice.

Becky
 

Herdaughter

Active member
Joined
Sep 15, 2017
Messages
50
Reason
Loved one DX
Diagnosis
08/2017
Country
US
State
Oregon
City
Portland
Dear Texans
You are in a judgement free zone here. Please and thank you are always good to hear and really important.

I’m sure you’ve already thought of this but have you contacted your local hospice folks to see if they know who provides the type of VENT respite care specified by the folks granting you the 3 months?

Sending you love and peace.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,480
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Oh Texans, I have no answers but you can rant whenever you need to.
 

Atsugi

Moderator emeritus
Joined
Jan 11, 2011
Messages
5,189
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
FL
City
Orlando
It is so, so hard just to watch someone go through this for so many years. I'm sure I couldn't do it. My journey was less than a year. But we have had some CALS who emerged from this hell to lead a second life, a happy and fulfilling life of love after ALS. I wish you luck.
 

Narrowminded

Extremely helpful member
Joined
Apr 30, 2016
Messages
2,608
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
State
PA
City
Pittsburgh
Texans I don’t know how I missed your post. However I am in your same boat. My DH was dx in 2007 then trached and vented in 2010. I too care for him alone mostly. My DS comes over a few days a week and my DD is in grad school for PT. It is hard. However, having a husband on a vent, yours should be able to sleep thru the night. I think you need to have the convo that Sharon had with her husband.

Mine also avoids the pleases and thank you. We have the Accent eye gaze and I would think the Tobii could do this as well. We have programmed in certain phrases, like suction, please. When I programmed in his most used requests/commands I personally added the please at the end. This way, he just picks the phase ina box, so one click as opposed to all the letters. And we are able to have predictive text boxes as well, so that as soon as he starts spelling a word, many suggestions pop up. If you don’t know how to do this programming, you need to call your speech therapist or Tobii guru to set it up.

Having a vent does make it harder to get help. In my area hospice will not help and agencies have to send a licensed nurse. However as you know, you could train someone. Now finding that someone is very difficult. However, i would put the word out that you are looking for some one willing to learn, who would be willing to volunteer even just a few hours a week so you could go out, even if it’s just for groceries.

I’m thrilled to hear your son went back to finish his degree. It’s so important for our adult children to have their own lives. I have said the same thing about me signing up for this. But the kids didn’t. I will be married 33 years next month. My DS is 30, his wife 28 and my DD is 23. I totally and completely feel your pain.

You might also contact your local ASLA and get advice on agencies that to vent care. They might also have some respite hours for you and should be able t contact the agencies for you as well.

Hugs,

Sue
 
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