New to your forum...need someone to talk to

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Rhonda J

Member
Joined
Jan 24, 2014
Messages
20
Reason
CALS
Diagnosis
06/2009
Country
US
State
Oh
City
Fairborn
My husband was diagnosed in 2009..started out pretty fast and within a year or so. lost ability to walk, talk, dress, bathroom.. we are into the full throes of this damn disease and I feel like I cant take it anymore..I am angry all the time :-x...I cant even get the energy to go to the store...he has an aide TG.. that comes in the am to get him up and dressed and get his day started. the only places I go are to Walmart and bowling.. once a week....some times I just want to run away.. and scream.."I didn't sign up for this!".. but he didn't either...my heart hurts for feeling that way...
 

AfraidButNotAlone

Senior member
Joined
Jul 27, 2013
Messages
533
Reason
PALS
Diagnosis
07/2013
Country
US
State
GA
City
Atlanta
Don't feel bad that you feel that way. I am sure we all (PALS) get it. I am also he is much more thankful for your support thanyou will ever know :)
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,332
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Welcome Rhonda, I'm so sorry you find yourself here!

Wow 4 years into the disease, that is really huge. You should really acknowledge that to yourself. My husband was only diagnosed May last year, and is already high care, and I honestly can't (and therefore won't because ignorance is bliss) imagine doing this for that long. If it happens that way, I will get there a day at a time, but I can't imagine what kind of state I would be in.

Now, is there any respite you can access that would let you actually run away for at least 2 days and a night, maybe even 2 nights? Remember I'm a carer too, not some person who looks glibly and says, make sure you take care of yourself! Carers burn out, that's a fact. Carers need time out and respite and that's another fact.

Sometimes we have to think outside the box a bit too. I'll be honest, I haven't had much in the way of respite for nearly 6 months and I'm feeling it. I don't know how I can get it, but I do know where I can go to find out if I really need it.

Is your husband on a vent if you don't mind me asking? There are some fantastic carers here who have been caring for years, I'm sure they will have some ways they have found to get some time out. You totally deserve it!

hugs
 

barneyswife

Distinguished member
Joined
Jan 10, 2014
Messages
224
Reason
CALS
Diagnosis
08/2013
Country
CA
State
b.c.
City
magna bay
Rhonda you are one tough lady! Please try and find your escape!
I remember when we used to travel near the end of our vacation I used to think, if I just start walking in this direction I can probably find a good hiding place where no one will find me and then I can stay here forever! Kind of makes me wonder....
I am so glad you are sharing and so sad you are in this position.
Hugs
Linda
 

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 remember the days of raising our two sons and I would say "I'm going to get in the car and when it runs out of gas that's where I'll be". Sometimes ALS is overwhelming to me. Who am I kidding a lot of times. I find when I am extremely tired I am more prone to just wanting to escape. My husband is on a vent. The farthest I can go in on the back patio with the door ajar. We are all here for you and you will find this to be the best support system ever. We all love our PALS or we wouldn't be known as CALS. It's ok to feel the way you do. We all understand.
 

Pkmado

Active member
Joined
Aug 11, 2012
Messages
48
Reason
CALS
Diagnosis
07/2012
Country
US
State
CT
City
Niantic
:-|One thing I always try to remember when I am down is so many are trying to raise children and be bread winner as well. My Pals and I are middleage and financially comfortable for the most part. If you feel pressured I am sure you have the right to. A good train of thought you have is he did not ask for this either. Hang in and best to you.
 

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
Rhonda, you have come to the right place. This disease is so overwhelming for the whole family! welcome to our forum, we truly understand what you are dealing with. It is hard to be in there all by your self with your fears that you can't burden your pals with and friends that just can't completely understand what you are going thru. We will be your friends who do understand and don't judge and will give you support and real advice that comes from experience.
 

zoohouse

Senior member
Joined
Jan 14, 2013
Messages
958
Reason
CALS
Diagnosis
07/2012
Country
CA
State
B.C.
City
Salmon Arm
I think that all of us CALS can understand the feeling you have. I am glad you have found this forum, and I hope that it gives you some solace, and a place where you can vent and share good times. I am my husbands sole care giver and have been for 1 ½ years except for 2 months when I had someone come in to care for him while I was at work, nursing. You are amazingly strong and you will keep on keeping on, one day at a time. Tonight when you go to bed repeat to yourself: I am an amazing person, and I am treating my husband the way I would want to be treated. This too will end and I know that when it does I will miss him. I am a good person and I will be happy .
I am sorry you are going through this difficult time, you will be in my prayers.

Paulette
 

FSHolbrook

Distinguished member
Joined
Oct 14, 2013
Messages
216
Reason
PALS
Diagnosis
09/2013
Country
US
State
ND
City
Fargo
Hi Rhonda,
We are here to listen and help if possible. Your situation is very much like what my wife is dealing with. I know it will get harder for her as time passes. It is really good that you have some help. No one signed up for this it is totally unfair. you have been dealing with this for a long time it is little that that you have the feeling that you expressed. Caregiving is very difficult and I understand your feelings completely.

Rick
 

Rhonda J

Member
Joined
Jan 24, 2014
Messages
20
Reason
CALS
Diagnosis
06/2009
Country
US
State
Oh
City
Fairborn
Thank you all for the kind words... sometimes I just get tired and upset...my husband was in the Air Force for 20 years, so thankfully we have the VA and Wright Patterson AFB for support. I don't know what we would have done without them...the VA has supplied all the equipment and supplies, we got a grant from the VA for special adapted housing..which we used to build a home for my husband. They helped us buy a Van that is for wheelchairs. As I said before.. my husband was diagnosed in 2009 and the disease progressed rapidly...the first parts to happen were the walking and talking...we communicate through Instant Messages on yahoo.. I haven't heard his voice in 4 years...he is not on a vent, he has a G Tube which we use for supplement nutrition, Jevity and medications..he is still able to eat at this time, but it takes him 3-4 hours to finish eating. he chokes on saliva but takes Robinal and also gets Botox in the salivary glands 3-4 times a year. We have a stand assist lift to get him in and out of bed, bathroom and shower. He has a special wheelchair for the shower. It tilts back and has an opening on the seat. He gets up at 7am with the assistance of the aide. I provide 99% of his care, he has an aide that comes in in the am to get him up and bathed and dressed. He is having problems holding his urinal in the bathroom, so we tried the condom catheters and that didn't work out..he will not wear Depends, so I have to change his clothes a couple times a day, top to bottom. He has "looks" he gives me when he has to go to the bathroom...and the sit down part.. I find myself trying not to look at him when he has to go... hoping that he doesn't need my help but that is not an option anymore..it has been for 4 years....I hate that part....I hate it that I hate it...he cant help it...
He has a C Pap and wont use it. Here I am sounding like I am complaining and should be grateful that he is here with me.
I am scared of what will happen to me in the end...can I stay in our home? can I afford it? how will I get along without him? My heart hurts thinking of it...being without him...and I will be alone the rest of my life. I was a bartender for 25 years...now I hate to even leave the house.. WHAT IF.. he needs something.. WHAT IF something happens? His family does not help.. they do not come around..he has 2 kids (28 and 30)...I have 2 daughters..they do what they can but they have lives too. I find myself resenting a lot of stuff.... last fall, he wanted a dog.. I am not a dog person...we got this puppy.. with the thought that he could be trained to be a service dog.. and it is nothing but a giant PAIN IN THE #%#....more stress, more drama.. it is just not working out....I have to deal with the dog, tearing stuff up, chasing cats, running out the door as soon as it opens..not getting the go outside to potty.... I take him outside.. (live in Ohio and the weather is like 2 below right now).. stand out there as long as I can.. bring him in.. he promptly pees on the floor...I'm sorry.. just rattling on and on....
 

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
Let it all out girl. we don't judge you. I have so been there...
guess what, you are going to feel better after you tell us all this stuff.
 

mrvaughan

Distinguished member
Joined
Nov 9, 2013
Messages
101
Diagnosis
05/2000
Country
US
State
MI
City
Grand Rapids
Don't feel bad! I am on year 14. There are many times that I have not wanted to come home. I have pulled my car over in a park to sleep there when I was so tired, but I didn't want to come home and deal with things anymore! I unfortunately started to drink too much at first to try to cope, but realized when I woke up each morning with a headache, that almost a bottle of wine a night was too much. Now, I still enjoy my 2 small glasses of wine, but a bottle lasts me 4 days instead of one :) . Everyone gives me this advice, try to get out more! My PALS always made me feel guilty, or maybe it was just my Catholic upbringing, every time I tried to do something for me! I do things for me now, I go to the kids gymnastics, and get a massage, and go to lunch with my daughters. As you can see, they are not wild things, or selfish things, but they are for me…. Anger is okay if you are a CALS or a PALS - holding on to the anger is not healthy for either. take care. Mary
 

Rhonda J

Member
Joined
Jan 24, 2014
Messages
20
Reason
CALS
Diagnosis
06/2009
Country
US
State
Oh
City
Fairborn
Thank you all for letting me vent... this past couple weeks have just been trying...2 steps up..4 back...I don't want you all to think that I just want to bash my husband.. I don't feel like that.. I want to bash this damn disease and what it has robbed us of...we had a GoldWing Motorcycle.. we went to Myrtle Beach every summer.. we rode the Blue Ridge Parkway.. he is trapped in a body that has robbed him of his life and happiness...he buys me flowers online...he loves ordering stuff online..he has an amazing spirit...this winter is really hard on him.. he gets all cramped up and cant move much.. he is truly my hero...
 

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
No sweetie- you're not bashing your husband at all. You are what I call getting it out. I had so many emotions that I tried to handle on my own. That's what I love about this forum, everyone understands. My husband is almost "locked in" as his RT calls it. Bedridden, vent, peg, hard time with his hands now and is unable to speak. I miss the man I married. He's still in that bed. His heart is still there and his love for his sons and grandchildren. It's hard to handle the lost dreams. We had so much planned for retirement but ALS changed all of that. He is the love of my life but I still struggle.
 

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
Debbie, I like what you said--it is hard to handle the lost dreams. so right. and I can not even imagine what it is like in my poor husband's head--his hurt must be twice mine. I have to remind myself often that he didn't want this I didn't want this and my loss is not less than his.
 
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