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tbananna

New member
Joined
Apr 25, 2013
Messages
4
Reason
CALS
Diagnosis
11/2012
Country
US
State
Ohio
City
Bedford
HELP, My husband has ALS and a veteran. The VA says that my husband has the right to say "NO" to a nursing home, because he is in his "right mind"! I am physically and emotionally burnt out, and about ready to have a breakdown. I am the only one around to take care of him! No other family members or friends help out. I do have an aide that comes in 3 hours in the am and 3 hours in the pm. Now he is becoming paranoid about everything I do and phone calls I make! :x Any suggestions. Respite only helps for a few days
 

MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
talk To your the va representative or social worker ASAP -- Sorry my speech is that my typing is gone and I am using text to speech to write this


Kind regards Max
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,659
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
City
orlando
He does have the right to say no, but you have that right also. I am not familiar with the VA, but I thought they gave you all the help you need. Max is right get ahold of them right away--you both need help.

this forum is a great place to talk with people who understand. sometimes just getting your thoughts out will make you feel better and we really care. ALS is such a hard disease for the whole family---he didn't ask for this but neither did you and you are both hurting.
 

Santa joe

Senior member
Joined
Oct 14, 2013
Messages
637
Reason
Lost a loved one
Diagnosis
02/2012
Country
US
State
South Carolina
City
Goose Creek
I so understand where you are coming from. I am my husbands caregiver and am so tired most of the time. Who am I kidding all of the time. I have a CNA that comes over 2 hours a day 3 days a week. My pals is on a vent and it is very difficult to find someone to stay with him. My sister, who lives two doors down, is still a little uneasy. She will sometimes come over on Sundays and let me walk around the block. Haven't been out of the house in 3 weeks. It is very important to get out. It seems when I become overwhelmed things are 10 times worse. Like Barbie, I have no knowledge of VA benefits but from reading post of those her are vets, they are amazing with ALS patients. Please check into this so you can receive some much needed help and relief.
 

zoohouse

Senior member
Joined
Jan 14, 2013
Messages
958
Reason
CALS
Diagnosis
07/2012
Country
CA
State
B.C.
City
Salmon Arm
I am sorry that things are getting so difficult. Are you in contact with the PVA, they are excellent advocates. When the aide comes in do you go out and do something for yourself? I would contact the VA and speak to his primary care physician, and ask for a cognitive functions assessment. Keep a diary of his actions and comments that make you feel that he is becoming increasingly paranoid. There are medications that can help. Because we live a distance from the VA we usually go and stay for 3-5 days, and meet with the multi-disciplinary team, ie. physiotherapy, hospice, pulmonary specialist, psych, dentist, speech therapist, and recreational therapist. We get a lot done during the stay, and I get a bit of a break, sometimes. I do have a hard time trusting the nursing staff the settle and get him up the way that we have found works the best. I am sorry you don't have any family support, I know that they and my church is our saving grace. I hope this helps you a bit.

Paulette
 

MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
One more thing, the VA should provide you with a social worker to help with these difficult times.

Sometimes the VA can be slow, but it is important to be in their system and stay active with them.

For what it's worth,

Max
 

BrianD

Distinguished member
Joined
Sep 15, 2009
Messages
403
Reason
PALS
Diagnosis
08/2009
Country
US
State
Colorado
City
Colorado Springs
I hope things work out for you. I actually tried to get into a nursing home but they turned me down for having too high of care needs. This is just awful on my wife being my caregiver.
 

david ray

Member
Joined
Feb 28, 2014
Messages
16
Reason
CALS
Diagnosis
6/2011
Country
cr
State
costa rica
City
san ramon
hang in there. I know how tough it can get.Let him make any decisions on his life.My wife is in late stages and I take care of her full time so believe me I know this disease very well.Its the hardest thing I have ever done but one thing has helped in an odd way.i let her make many decisions on her care.That seems to take it off my shoulders. good luck. David
 

Katie C

Very helpful member
Joined
Aug 1, 2009
Messages
1,560
Reason
Lost a loved one
Diagnosis
07/2009
Country
US
State
CA
City
San Jose
If he is becoming paranoid, you need to find a neurologist or neuropsychiatrist to get him evaluated for FTD asap! Until the evaluation, document every "weird" or "paranoid" behavior in a notebook. There are still to many doctors who assume there is no cognitive involvement and haven't familiarized themselves with the most current research. When you have time, check out the UCSF website for information on FTD. Good luck.. this is not an easy time.
 

mariam

Member
Joined
Nov 5, 2013
Messages
29
Reason
Loved one DX
Diagnosis
10/2013
Country
US
State
ca
City
Orange
I am so sorry to hear that. It is really tough, my mom is going through the same thing with my dad and it is driving her crazy and making her depressed. You need to get out and have a little bit of social life, or maybe you can invite friends and family over? My dad has the FTD also and his behavior is on the odd side at times and he is not the same man of sound mind that he once was, its really hard as his daughter and for my brother to try and reason with him and basically tell him how things are going to be. Its for his benefit yes, but also for my moms. I don't know anything about the VA stuff, but please know that we are all here for you and we all are going through a lot of the same. Hang in there and good luck with the VA situation.
 

Atsugi

Moderator emeritus
Joined
Jan 11, 2011
Messages
5,200
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
FL
City
Orlando
Tbananna, I hope you have quite a few resources available to you. You should have ready access to a rep from the Paralyzed Veterans of America. Besides a VA social worker, you should have both an ALS Team at a VA Hospital and also be under the supervision of a Primary Care doctor at your nearest VA Medical Center. There's also a chaplain and a psychiatrist. They should all realize that if you were to burn out, the veteran would lose his primary care keeper, you! Finally, you can hire an elder law attorney to help you with matters regarding power of attorney and competency.
 

MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
>... You should have ready access to a rep from the Paralyzed Veterans of America. Besides a VA social worker, you should have both an ALS Team at a VA Hospital and also be under the supervision of a Primary Care doctor at your nearest VA Medical Center. There's also a chaplain and a psychiatrist. They should all realize that if you were to burn out, the veteran would lose his primary care keeper, you! Finally, you can hire an elder law attorney to help you with matters regarding power of attorney and competency.

Well said, Mike.The PVA is a good starting point. Also the VA social worker and chaplain may be able to help you cut through VA redtape.

Good luck!
 

tbananna

New member
Joined
Apr 25, 2013
Messages
4
Reason
CALS
Diagnosis
11/2012
Country
US
State
Ohio
City
Bedford
Thanks ! everyone for your support and help. He is progressing very fast.
 

Pkmado

Active member
Joined
Aug 11, 2012
Messages
48
Reason
CALS
Diagnosis
07/2012
Country
US
State
CT
City
Niantic
Do not underestimate the helping hand of Hospice care. Call them, he will qualify. My husband is VA and after his PEG insertion there were difficulties. A good friend suggest hospice. We were a bit put off at first but find their help invaluable. My husband after a couple of years has now moved into rapid decline. Hospice does not mean he I has a foot out the door. They are more about helping to keep him comfy. Also I am waiting for aid and assistance with the va so I can be comfortable about quitting my job. We had to apply several times to get the ok. Still not sure but if it weren't for my friend pushing me to be insistent I would not be benifitting from this help now. Find your nearest Hospice and just talk to someone there. If he dos not qualify now he will soon. The squeaky wheel gets the oil. My friend says the word Hospice puts people off and gives the wrong impression of what all their services can provide and when. Best of luck.
 
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