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Chase_Corin

Distinguished member
Joined
Nov 24, 2010
Messages
134
Reason
Loved one DX
Diagnosis
11/2010
Country
CA
State
On
City
Perth, Ontario
Well the Hospital bed arrived today and my dad had a hard time accepting it.

He wants to keep acting as though nothing is wrong and I see him faltering every day. My mom was no longer able to get him in and out of bed and he dosn't seem to understand that. Mom has Fibromyalsia and a bad back and I am not alway there to help her.

I think dad is activly resisting change because it's all so scary for him. Each piece of equipment that is brought in is a visual confirmation to him that he is getting worse and I don't know how to react to make him see it in a better light.

We had grab bars installed years ago because of his and mom's back so that isn't such a big deal but the transfer bench and the hospital bed are big reminders. We are also having estimates for a porch lift being offered because he is having a terrible time with the stairs.

The ALS Society here in Canada is wonderful but they don't offer much help in dealing with the emotional aspects of it all. We can't go to support meetings because they are over an hour away and dad refuses to talk to anyone about it.

We finally after months and months of him avoiding the subject got both mom and dad to revise their will, set up power of attorney and a living will but it was a very hard subject for dad to broach.

Dad has always been a very stoic person and dosn't like discussing his health, the future or even his last wishes. We are not pressureing him but my mom wants to know all of these things before he looses the ability to speak.

I am writing down things as they come up as to when Bills need to be paid and how things in the house like the furnace and things need to be maintained. It's not the little things that are bothering me its how to deal with the emotions.

My dad never used to cry and now he does all the time. I have to leave the room before I burst into tears too. Does anyone have the same problem?
 

Pepper

Active member
Joined
Dec 5, 2010
Messages
95
Reason
CALS
Country
US
State
TX
City
Nueces
I cried a lot for months, fearing the worst then my husband's condition plateau. Life slided into a new normal and was not bad. I still dreaded him becoming completely paralyzed. God was merciful, he never was and passed away suddenly last week. My husband cried daily until he entered that new normal phase. It was soundless cries. This disease is very cruel, hard, unrelenting. Very heartbreaking and very painful. Take care.
 

abbas child

Very helpful member
Joined
Feb 29, 2008
Messages
2,159
Reason
PALS
Diagnosis
07/2007
Country
US
State
Maryland
City
Eastern Shore
Chase, my heart goes out to you as you see your dad so upset. The stoics along with the other extreme are probably more likely to find the emotional aspect of this very hard. I would encourage you to cry with him, and put your arm around him. That way he may find it easier to let the pressure of his grief out--you'd be giving him permission.

My husband and I do the eyes welling up a lot, but only really cried together once... I'd been trying to hurry, limping along on carpet after climbing stairs. I fell on the floor and wailed. Phil followed me, lay on top of me and cried. I felt so relieved afterward--immediately, I guess. You don't need to be outwardly strong, without crying. Trust me.
 

LornaDoone

Distinguished member
Joined
Apr 16, 2010
Messages
211
Reason
Loved one DX
Diagnosis
09/2007
Country
CA
State
BC
City
Lower Mainland
Oh dear.. we have that problem too. Each piece of equipment is an emotional nightmare. Lots of love to you. lots.

Something you may want to look into is if your Mom can sign checks, etc for your Dad. Make sure the power of attorney allows her to sign anything on his behalf. Often they are limited and do not include this. Ours did not and it was a hassle changing it. Easy enough really, but a hassle nonetheless.
 

joni51

Senior member
Joined
Sep 8, 2010
Messages
985
Reason
Lost a loved one
Diagnosis
10/2010
Country
US
State
Al
City
Valley
I know exactly where you are coming from. having the same issues with my husband. I don't know how to deal with it either.
 

Miss

Very helpful member
Joined
Apr 11, 2010
Messages
1,757
Reason
Lost a loved one
Diagnosis
04/2010
Country
US
State
In the Land of Cotton
City
Way Down South
Each piece of equipment brought some measure of pain. The hospital bed was probably the worst, though. That was very hard for both of us. I put our king size bed - headboard, linens and all - out on the curb. It was gone within the hour. A huge chapter of our marriage was over.
 

catcaniac

Distinguished member
Joined
Dec 11, 2010
Messages
188
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
North Carolina
City
Sneads Ferry
So sorry about your dad's progression. There are a lot of mourning stages with this disease. In retrospect, I think a PALS has to let go of a part of themselves with each loss of movement and then again with each new piece of equipment they have to depend on. I can't really imagine how scary it is for them. Hopefully, once it is completely necessary, your dad will accept the hospital bed as something he can control. My husband clings to his button because it is the one thing he can still do on his own. Moving the bed up and down is also how he wakes me at night so it is a comfort to him. I do dread the day when we have to mourn the last loss, his left hand. Best wishes for your dad and thanks for being there to support your mom.
 
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