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kingsmad

New member
Joined
Oct 26, 2013
Messages
2
Reason
CALS
Diagnosis
07/2013
Country
US
State
maine
City
dixmont
I am new here, my husband was initially diagnosed with ALS on July 17, 2013. Sometimes it seems like it was yesterday, sometimes it seems like a million years.
The first symptom was right footdrop in March. He thought that he had something wrong with his ankle...then he thought it was his hip. Or maybe his back.
His Dr thought he might have some sort of arterial blockage. the chiropractor was the first to say ALS.....we were scared, but didn't want to believe it.
the Dr. decided that it wasn't a blockage, and sent him for a lumbar MRI. it came back fine. he was sent to a neurologist who tested for Lyme disease and sent him for a cervical MRI, along with a bunch of other blood and urine tests.
Then we went to see the neurologist for the results. he said the three letters none of us wanted to hear.
He said that Dennis had about 18 months. We thought that was bad, but we thought that he probably had a year of being somewhat mobile, with the use of a wheelchair....boy were we wrong!
two weeks after diagnosis he began using a walker; it was truly fortunate that someone gave it to us.... two weeks later he was in a wheelchair, and has not been able to stand since.
I was preparing his meals and putting them in a lunch bag for him. I would come home and look to see what he had eaten. everything was gone....I later found out he was feeding it to the dog. He was losing weight constantly. he was also getting weaker. I had to transfer him to the wheelchair, the lift chair, the commode, the bed. anywhere he moved, I moved him.
we had come to the conclusion early on that our home was not wheelchair friendly (it's an older mobile home) and made the move to get a new doublewide.
On Labor Day weekend we went to a family gathering, and moved out of our home. we were going to stay in a camp that belongs to one of his sisters. I ended up staying there as he was admitted to the hospital. He was there for the entire month of September. During that time things continued to go downhill. the only positive thing is that we have gotten a confirmation of the diagnosis. we also got a feeding tube, a tracheostomy and a ventilator.
when he was released we were supposed to go to his sister's house, but her leukemia is no longer in remission and we are at his mothers home.
we have come across many stumbling blocks on the road to getting into our new home, but should be moving in by Thanksgiving (I hope!)
as if this isn't bad enough, the hospital discharged him before they should have. His paralysis and ventilator qualify him for in home care 158 hours per week. the nurses should have been in place before discharge...instead the 'family' agreed to care for him so that he could go 'home'......I got all overnights, and they agreed to cover the days. a plan that fell apart on the day of discharge. No one can make it on time in the morning so that I can get to my job on time, and they always ask me when I'll be back.
I began thinking I would have 7 twelve hour days; I've had 72 hour 'shifts' because people had other things to do, and he's only been out for 27 days! last week I had all but 46 hours. It's too much, and still they want me to do more. I have to work. we need money!
the nurses started last week, of course they are taking all of the daytime shifts....everything is covered from 7am to 11pm. that's awesome, but no one has offered to do an overnight....there is no where I can sleep in this apartment besides in the room where my husband is.
The best part of this whole mess is that both my husband and I have come to realize that his mother is suffering from dementia.......and won't admit it. I'm lying, her husband is suffering from dementia (step dad) her ex is losing it.....but she is fine and normal....I am going crazy! I am sorry for the length of my post, but once I got started I couldn't seem to stop!
I know that this disease is hard for everyone; those who have it, their spouses, children, siblings, parents, friends, and even co workers; but I am feeling really overwhelmed. Things have happened so fast that I have barely had time to catch my breath; everyone is looking to me to help them figure out how to deal with this. Don't I deserve a little consideration? I feel like I am in an insane asylum.
 

bowser

Distinguished member
Joined
Aug 22, 2013
Messages
144
Diagnosis
03/2011
Country
US
State
Arkansas
City
Cherokee Village
----------" I have to work We need money."--


I really sympathize with a caregiver who also has a job.
The wife and I are 68 and I can't imagine how I could cope being caregiver if I was not retired.
 

zoohouse

Senior member
Joined
Jan 14, 2013
Messages
958
Reason
CALS
Diagnosis
07/2012
Country
CA
State
B.C.
City
Salmon Arm
I'm sorry that you don't have more support from your family, it is so important. Even just knowing that they are there is bolstering. I don't know what I would do if I didn't have my sisters, or Tim's daughter. They don't actually do any care, but they make suppers, and help around the house, and just love on us. Sending you a big hug.
Paulette
 

ottawa girl

Moderator emeritus
Joined
Jun 14, 2012
Messages
1,506
Reason
PALS
Diagnosis
04/2012
Country
CA
State
Ontario
City
Ottawa
Kingsmad -

Your story brought tears to my eyes.

You must reach out to the greater community for help. Even if you don't belong to a church - there are many church groups just waiting to be asked. Even if it's a rotating group of people to sit with your PALS a few hours a day so you can get some rest. People are good. They just need to be asked. So long as you are doing it all - you make it look like you are coping.

Contact friends, family, former work mates of your PALS, your colleagues, third cousins... But be specific with your request. Be it a two hour sitting gig, a casserole every other Tuesday - whatever. You may be pleasantly surprised. Seems like a lot to ask... But if each person does a tiny bit - it's a huge thing for you and your husband. It will give you time to just be together.

Finally, you could contact Hospice for assistance. They offer an array of services and support as well.

I will keep you in my thoughts and prayers.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,728
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
I'm so sorry that this has progressed so rapidly and is such a burden.

I was feeling a little sorry for myself this evening but your post has made me realise yet again that other CALS are doing it much tougher.

I do hope as Elaine suggests you can find some ways to get specific help, before you run down too far, and can't work at all.

I'm a working CALS too and it is really tough!
 

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
Sounds like your family has their head in the sand when it comes to helping. is there anyone you can count on for help? if you have one person, you can have them organize the helpers and confirm that they will do what they say. I agree, sometimes cals make it look easy and don't show the struggle they face. others accept that brave front because they would rather not step up--and then you get no help! sounds like your MIL may fall on your shoulders also, so do not take that on! your plate is more than full.

I am sorry your husband is progressing quickly. If you could just get help one night a week--and maybe some dinners and chores done that would be great for you. like you said, you have to work and you can not just keep doing everything. There are websites that help you get help--lots of helping hands dot com and caring bridge dot com.
 

skipper66

Very helpful member
Joined
May 20, 2012
Messages
1,478
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
IL
City
SMALL TOWN IN
I am so sorry to hear about all you are going through. Try to contact all the agencies you can and explain your plight. Ask people you know to help you out. I think a good place also to start would be with some local churches. Sending you a hug, Kim
 

goolia75

Active member
Joined
Jun 12, 2013
Messages
45
Reason
Lost a loved one
Diagnosis
05/2016
Country
US
State
UT
City
Pleasant Grove
I agree, local churches should be a good place to start. The Mormon church loves helping people in need. I am not a member of the church but my family members are. If you want, I get find the local bishop in your area and have him contact you for help. Even though I'm not a member, they showed up at my house every night for a week straight with dinner after my brain surgery. I'm sure they would love to help your family out.
 

Tx Daddy's Girl

Distinguished member
Joined
Jun 2, 2013
Messages
137
Reason
Loved one DX
Country
US
State
Tx
City
Beaumont
I'm so sorry for you. Try MDA and the local ALS Associations as well
 

jellis86

Distinguished member
Joined
Jun 22, 2012
Messages
254
Reason
PALS
Diagnosis
02/2013
Country
US
State
WI
City
Eau Claire
I'm truly sorry about your situation....I agree with others, reach out to local Churches, ALSA/MDA or even post something to your friends on Facebook.
 

rstutes

New member
Joined
Oct 31, 2013
Messages
6
Reason
CALS
Diagnosis
10/2013
Country
US
State
La
City
Sulphur
I am so sorry for your struggles. I am the caretaker of my 58 year old brother.. He was diagnosed 2 months ago...Thankfully he is in the early stages.. but I am aware of the journey ahead. Praying for you and your husband. Hoping your can find help.
 

mrvaughan

Distinguished member
Joined
Nov 9, 2013
Messages
101
Diagnosis
05/2000
Country
US
State
MI
City
Grand Rapids
talk to the nursing company supervisor if you can. They know that the disease is a whole family thing and they know that the caregiver needs some rest. At 158 hours a week that is 22.5 hours a day. Nurses will most likely call off for a 3rd shift, so the best shift to cover is 3rds. So have the shifts butting up together to the one before it. The nurse before is not allowed to leave. So if someone works say, 11 to 7, make sure someone works 3-11. That is 16 hours a day, so you still have a part timer at 6.5 hours a day left. I would have them work 830-3, that is a great scheduled that almost no one that takes it will call off - a mom, a 2nd job, a lpn studying to be an RN, it is good hours. So, your most likely nurse to show up is your 830 to 3, and then no one else can leave. He will be without nursing from 7 in the morning to 830, surely a family member or a local church, or the local als association can help you hook up with those 1.5 hours. I would never put yourself as the main person, because you are the main person. Delegate the medicine and supply ordering to the nurses as well as taking care of his wash and personal care. It will be easier on you, but will never be easier altogether. Let me know if you need to talk more, we have had nurses in our home for over 5 years, and it has been an incredible challenge for me - I work full time also. God Bless you. Good luck.
 
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