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DonnaJ

Member
Joined
Feb 6, 2008
Messages
25
Diagnosis
07/2001
Country
US
State
West Virginia
City
Culloden
Hello Everyone,

I registered a few days ago. I haven't introduced myself because I've been so busy reading all the different posts. My heart truly aches for all. I was sharing some of your stories with our Hospice nurse and counselor the other day. I've been caregiving for my husband since July 2001. He says he was sick since 1998, but didn't know what it was and shrugged it off to being out of shape and getting older. At the time, I was 41 and he was 43. Talk about shock and denial. Walking around in a dream state still. It's been 8 years and it seems like we just found out the diagnosis yesterday. Keep thinking I'm going to wake up and its all going to be over.

He started out with the first symptoms of falling down a lot and getting choked on his own saliva just sitting and watching TV to the point it would scare me to death. Next, came tiredness, emotional and then came neck surgery to replace a herniated disc with a donor bone and carpal tunnel surgery on one hand. Everything went downhill from there. Uncontrollable laughing and crying. Its all so heart wrenching.

We went to Cleveland Clinic referred to us by our primary physician in June 2001 and again in July 2001. We saw Dr. Pioro. Scary and like I said we walked around in a dream like state. We came home broke the news to the family, started on the meds and vitamins and pt perscribed and went from there. Every day, week, and month brought on a new symptom. We learned on our own, educating ourselves and joined the ALS Association of the Western Pa/West Virginia Chapter and raised lots and losts of money for the next 3 years and found the support and knowledge we needed. Then he got so he couldn't get out anymore to the Doctor or anywhere. He hasn't been off the property since. I quit working in 2005 when he fell in the tub and broke his ribs and have been home fulltime since.

To date, he does not talk, chokes, I bath him from his chair, mash and puree foods, use puddings and mashed potatoes and gravies. Everything is chopped fine with gravey. He can walk a few steps, far enough for me to get the manual chair under him to take him to bed or to his power chair. The ALS has sped up the last few months and the weakness is winning. He can't handle lots of noise or people around. So, I believe he has alot of depression and anxiety, but refuses to take anything for it. He is currently going through his 3rd time with a UTI infection. No strength or muscle for bowel movements.

We still smile, kiss, and laugh. I'm up and down every 15 minutes to do something for him. Wipe the drool away, light his cigarette, help him with the urinal, put icy hot on his back (lots of lower back pain), put the massager on his back, etc etc. He still takes episodes of falling and has lots of scars from pretty hard falls over the last few years. He has been having these episodes every few nights just before he is ready to go to bed. It's like a huge drunk or high for the lack of a better description. His body is just lifeless and he can't help me at all. His entire body is stiff and sore and can hardly stand for me to bathe him, he just cries out. He refuses a hospital bed or anything that will make it easier on me. He is such a proud and stubborn man. He has fought to do what he can on his own since day one.

I've been through and go through every emotion a human can experience. I'm tired and down in my back, right knee, neck and left shoulder from caregiving, but he won't let anyone do for him but me. Surprisingly, Hospice has kept us going on 3 years now. He has been sick like I said for a total of 8 years this July. He suprises everyone. We say every year "he won't be here come Christmas" and yet he is still here at home. He has his down days as well looking up to the Lord above and pleading with him with streaming tears to let him die. Then there are the good days, smiling, minimal back pain, goes out in his electric chair to get the sunshine on his face.

I do my crying and worrying out of ear shot from him. I try to stay up and keep us both going on top of running the house and managing everday life tasks.

We have lots of love and prayers from family and friends who run errands, but as far as any relief I have none. But, I'm adjusting and its okay more days than its not.

He takes Rilutek, Zanaflex, Baclofen, Quinine, Restoril and vitamins of C, Coenzyme Q10, and E. He drinks 2 to 4 ounces of Noni Juice everyday. His left hand is curling now and
the fasiculations and cramps have been around since day 1 but to date are worse than every thank God for his meds or he would be rolled up into a ball in worse pain than he is now.

For everyone that is walking into this new, blind and scared. Please know, that there is a God above and he loves us and he understands when we lash out at him and the ones we love. It's normal.......We all don't understand why it has to be us and the one we love, but we will someday.

Your faith in God and knowing him as your savior is what will get you through each day. Sometimes God says "no" but, he'll never forsake us when we need him most.

Heavanly Father, I pray that we all will feel your loving arms around us comforting us and guiding us with patience and knowledge and strength while we fight for our loved ones who are suffering. Amen....

God Bless You All,
Donna - WV
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
Hey Donna,

All I can say right now is BLESS YOU!
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Who says thhere are no saints and angels walking among us? You are one Donna. Yours is a difficult lot in life. My wife and caregiver read your post and said, order the stuff, tell him he'll use it or out he goes. She can be tough if she has too. Tell your tough guy husband you know a big as- X firefighter tough guy that uses a hospital bed, Bipap, commode chair, wheelchair etc because it's better for my wife and me. He's not being tough, he's being stupid.
AL.
 

CindyM

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Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
I agree. Anything that makes the life of the caregiver better also helps the PAL. Somemtimes it is hard to see it in that light. JMO. Cindy
 

Lorie

Senior member
Joined
May 17, 2007
Messages
546
Reason
Loved one DX
Country
Uni
State
Alabama
City
Mobile
Donna

We moved my brother Tim from WV last Jan. He had Cramps and Twitching for 7 years before DX in March of 2005. Slow Progression. He can still Eat, Drink and Talk very well. He has to be fed. He cannont use his Arms or Hands and his legs are weaker.

Tim had to loose his pride along with alot of other things, as we know. I even help him use the Potty and neither of us think anything about it. We know he has to be helped. So we get it done! There is nothing I wouldn't do for him. I have even offered him one of my arms and legs if a cure was found and he couldn't still use his Limbs. He said he wouldn't take that from me.

We know what its like. But isn't it worth it. Knowing that we are helping someone we love, Unconditionally!

Lorie:-D
 

DonnaJ

Member
Joined
Feb 6, 2008
Messages
25
Diagnosis
07/2001
Country
US
State
West Virginia
City
Culloden
Who says thhere are no saints and angels walking among us? You are one Donna. Yours is a difficult lot in life. My wife and caregiver read your post and said, order the stuff, tell him he'll use it or out he goes. She can be tough if she has too. Tell your tough guy husband you know a big as- X firefighter tough guy that uses a hospital bed, Bipap, commode chair, wheelchair etc because it's better for my wife and me. He's not being tough, he's being stupid.
AL.

Al, and wife, so nice to meet you all. Thanks for listening. Today, he told me I was rushing him to get a hospital bed. I just backed off. He said he would take it when he needs it fulltime. I just thought it would help on his bad days and he could use it as a lounger to comfort his back pain and rest his legs from hanging down all day. The Hospice nurse called today and he does not have a UTI infection. He has Prostatitis and I'm concerned. I did some reading on the internet and it doesn't sound good. It sounds like it also reoccurs as well.

Al, does your wife use a Hoyer lift to move you around or any other type of equipment? Our Hospice has the Hoyer lifts but they are not crazy about them. They say they are not very safe but people do use them.

Hope you had a good day! Thanks, Donna-WV
 

DonnaJ

Member
Joined
Feb 6, 2008
Messages
25
Diagnosis
07/2001
Country
US
State
West Virginia
City
Culloden
Lorie,

Sorry about your brother Tim. However, I'm glad for the both of you that you have each other. Sometimes, I think we as caregivers we are picked from a special cut of cloth to take this journey. I do believe not everyoone is cut out for it. Bless you and Tim. I keep all of you in my prayers.

PS u said that his hands and arms don't work anymore. Although my husband isn't using this yet I know its coming and he likes to get dressed everyday. I have discovered cutting my husbands shirts up the back and semming them and sewing a ribbon at the top for tying or small velcro on the back, kinda like a gown. that way they are easy to slip on and he can still wear his shirts.

Tell Tim hello from Wild Wonderful West Virginia.

Prayers, Donna
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
We do have a Hoyer lift from the ALS loan closet. When they trained us with it they said if the patient has some mobility one person can use it fine. If there is no strength left 2 people are better but for bathroom trips there is not always someone around. Lots of people here use them just fine. No one has ever said one tipped. We don't need ours full time yet.
AL.
 
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