How do you all feel ?

Hellybelly

New member
Joined
Nov 2, 2019
Messages
2
Reason
Loved one DX
Diagnosis
03/2019
Country
UK
State
NY
City
Hertfordshire
Hi all. I’m a care giver to my hubby. He is 54 and has had symptoms from jan 18 but wasn’t diagnosed till March 2019. He has gone down hill fast since March as he was still walking with a stick. Now he can’t do anything for himself. He can’t blow his nose, wipe his eyes, scratch himself, feed his self. The list goes on. Does any one else feel they are grieving the loss of the person who they were? It’s a awful disease; it takes everything from them . And for the care giver as it’s 24 /7. You no longer sleep as they wake all night with spasms. You can’t go and do the things you did before. Your whole life has changed. I not only grieve losing my hubby as he was, I grieve for my life back. That might sound selfish but I’m tired and exhausted. It’s awful. I hope other care givers understand where I’m coming from and it’s not just me. X
 
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affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,239
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
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AU
City
lala land
Hi HellyBelly,
Sorry to welcome you here.
I think sometimes we feel guilty for some of our feelings, but they are totally valid. This is a huge loss for you as well and the grieving is so hard as we feel helpless to do what we want most - to cure it and have our person back to full health. I'm sorry your husband is so young too - my Chris was the same age xx
 

ecolon58

New member
Joined
Jan 9, 2020
Messages
4
Reason
CALS
Diagnosis
06/2016
Country
US
State
NY
City
Centereach
I know exactly how you feel. My husband was 57 when he was diagnosed in 2016. This last year has been the worst. He cannot do anything for himself either. I have a couple of aides to help as I work full-time. The rest is on me. I grieve for my life back as well and I am tired and exhausted too. I grieve for the life we lost as a couple a few years from retirement and wanting to travel and enjoy our life. It is a long grieving process. I hope you have a support group, it does help.
 

vltsra

Distinguished member
Joined
Nov 12, 2015
Messages
391
Reason
CALS
Diagnosis
11/2015
Country
US
State
CA
City
San Diego
Hellybelly, I think we CALS all can relate. Before my PALS was diagnosed, I was very fit - cycled 3 centuries, and did several cycling trips overseas. My PALS is a slow progresser, and the last year has been hard. He has lost a lot of function, can't do what he enjoys, and neither can I. We both worked very hard in our businesses, saving for our eventual retirement. My dream in life was to travel with my PALS one day. Now he is confined to our bedroom, can barely do standing transfers, and is dependent on bipap. I do miss the way I was and wonder how long I am going to be caregiving; with slow progression it could be years. I'm physically tired and emotionally exhausted, too.

Is there any way you can get some respite? It helps me to at least be able to get out sometimes. You are right, it is an awful disease. You are not being selfish - it is important to preserve part of yourself so you can continue in life.

V
 

Meldz

New member
Joined
Feb 2, 2020
Messages
7
Reason
CALS
Diagnosis
09/2019
Country
US
State
CA
City
Solano
I know exactly how you feel. My husband had his first symptoms in April 2019, was diagnosed in September, although we suspected in June. His disease is also very quickly progressing. I had a good cry about a week ago, feeling exactly the same way. He holds my hand differently, can barely talk, so we don't have many conversations, except for me talking, and I have to do almost everything for him, shave, shower, dress, toilet, feed him, etc. We still try to laugh. I love it when friends come over and recount stories and his eyes light up. We are still planning on traveling, although he will probably sleep most of the time, and I will be exhausted. The one thing that has helped me the most is I try to find the blessings that are still coming our way. Friends who will stop by and talk to him, or mow the lawn or bring in a meal, or offer to sit with him(even though I don't take them up on it.). It does get very lonely and frustrating sometimes, well, I mean almost daily. We have finally gotten the sleeping down.. He takes Ambien at night, wears a brief, and I cover my head with my pillow when he makes too much noise. Work with your doctors on the sleep issue. That was the biggest relief. He still wakes up at least once at night, but before it was every hour. Once we were able to get him to sleep, it was much easier to deal with all the rest.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,239
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Realising that what you feel is both valid and normal can be half the battle.
That really is one of the huge values of this place - we get it, you are understood, and while we will make suggestions, sometimes we all just need to vent and say - wow this is hard and I've lost so much!

Keep talking 💗
 

ecolon58

New member
Joined
Jan 9, 2020
Messages
4
Reason
CALS
Diagnosis
06/2016
Country
US
State
NY
City
Centereach
I also suggest getting help with aides. We had to go on medicaid. It was a long, hard process, use a lawyer, but well worth in the end. We could never afford to pay out of pocket. My children help when they can, but have their own jobs and lives. I know everyone always says to me "let me know if you need anything or want to get out for a while." I can't ask a friend to sit with him for a few hours because that would entail having to bring him to the bathroom or feeding him and I can't ask someone to do that. He does have friends that come by and visit and that is helpful. My daughter helps a lot, but can't ask her to do shower or bathroom. Get aides if you can!
 

Jrzygrl

Senior member
Joined
Feb 14, 2017
Messages
611
Reason
Lost a loved one
Diagnosis
08/2014
Country
US
State
NJ
City
X
Yup. My husband was diagnosed at 55. Everything changes. The balance shifts. It's the hardest job ever. We grieved for the life we lost, wishing just to be ordinary again.

Our local ALS Association had a program to provide some help with aides. Our aide came 12 hrs per week. Most of the time, I'd end up running errands, but it was a bit of a break. See if there is some way to get help, even if it's only for a few hours. It does a world of good.

The community here is absolutely AMAZING. Come, share, ask questions, rant. No judgement here.

Hugs!
 

ARCG

Distinguished member
Joined
Oct 12, 2016
Messages
142
Reason
CALS
Diagnosis
1/2015
Country
US
State
TX
City
Houston
My husband was 55 when diagnosed. We, too, mourn the life we had worked so hard for in our later years. The last few years have gone by in a blur. One thing I have learned is that we can adapt to the changes that inevitably happen, even though they are hard. It was so overwhelming and scary at first, still is, but after all these years I have more confidence in our ability to make the right decisions as changes happen. I miss my husband too, even though he is still here, if that makes any sense. Sometimes I feel like we live in a different dimension. This is a great place to find support. You are not alone and your feelings are vary natural
 

Weltschmerz

Active member
Joined
Apr 14, 2019
Messages
33
Reason
CALS
Diagnosis
01/2019
Country
BE
State
BE
City
Brussels
My wife was 41 when she was diagnosed early 2019. I’m younger, and neither of us had even heard much about this disease (which now seems so odd to think about). Symptoms had only been small signs like tiredness and a stiff hand for a month or so before diagnosis started, and now we’ve run through it all and are still here, still working together on life with a tracheotomy. I’m tired but somehow also strengthened by knowing what we have already managed. This forum has helped me, too, though at times I’ve lurked more than I’ve contributed...
 

Leo_Malkin

New member
Joined
Feb 2, 2020
Messages
4
Reason
PALS
Diagnosis
01/2018
Country
US
State
NJ
City
Hackensack
Right now my back is basically gone all the discs between the bones are gone my right shoulder constantly hurts I took a fall about a week ago and my ankles are really sore and bruised my feet are bruised up all in all I'm doing okay trying to deal with the pain
 

MarieLaure

Forum Supporter
Distinguished member
Joined
May 16, 2018
Messages
242
Reason
Loved one DX
Diagnosis
10/2015
Country
FR
State
Ile de France
City
mortcerf
The answer to the title of your thread is : lost
 

Missgranma

New member
Joined
Dec 24, 2019
Messages
4
Reason
Loved one DX
Diagnosis
09/2019
Country
US
State
VA
City
Roanoke
<quoted text removed>

Totally understand. My sister went from limping to full power chair in 6 months. She can't manipulate her phone to text me. I go over to their place Mon and thurs to help and give my brother in law a break from bathing, feeding, dressing and we watch Tv and sit in the sun. I'm losing her fast and she has so much trouble talking. We talk anyway. I love her so much and regret she is my baby sister and only 58. L never thought it would go this fast but if it has to be this way I don't mind for her sake I don't want to have her stiff and in so much pain. We were enjoying the health club cause she could go in the pool and feel weightless and move a little. Now this virus has shut everything down and we are stuck. They even canceled the support group so we never got to go once.
I understand your feeling the way you do. If you could maybe hire someone to sleep over so you can sleep or an aid to help with bathing and dressing. We are looking into that. Thank you for sharing
 
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